Have you become well again after a long struggle with a thyroid problem?
Will you share your story with others to give them hope and encouragement
whilst they travel their own personal road to thyroid wellness?
If you would like us to use your story as a case study, you can submit it to us online here
I was on the waiting list for a total hysterectomy, aged 42, five years after giving birth to my son. The doctor said it would solve the problem of my very heavy periods, bad PMT, depression, exhaustion and mood swings.
I then became very ill with pleurisy and the doctor thought I had an overactive thyroid, because my heart was beating so fast. In fact, the thyroid test revealed an underactive thyroid as the cause of all my symptoms.
I actually had autoimmune thyroid disease and once I had researched it years later, on Thyroid UK, my whole life made sense.
I had a history of bad neck pain, starting at age 8 and a strange pulling sensation in my thyroid area. I had collapsed after winning a race at school. At age 13, I suffered crippling pains in my legs and total exhaustion and had months off school. My friends used to carry me home!
Then the recurrent tonsillitis began and antibiotics every 2 weeks, culminating in a tonsillectomy during my mock A levels. I managed to get to university, but ended up in the health centre with pneumonia. I left university.
Then followed years of bad chest infections and glandular fever. My jobs were always part-time. I just never knew why I had so much less energy than everyone else. I also suffered from depression.
My journey has been a long one. Diana Holmes’ book, 'Tears Behind Closed Doors' inspired me to seek out Dr Skinner in 1998 and I have been on Armour ever since.
I suffer from a very rare type of arthritis in my knees called synovialosteochondromatosis which has caused me to have six operations, including a knee replacement age 54. I am due for a second one on the other knee.
I feel that so many operations have stressed my body so much that my thyroid recovery is incomplete. I still get 'poorly' days and can't tolerate stress.
My late father was also diagnosed with hypothyroidism as an old man, after years of suffering and misdiagnosis. He was not able to enjoy his retirement due to his ill health.
Hypothyroidism has badly affected my family and other members also have it.
Update: 4th July 2013.
As an update on a positive note, I have just successfully completed level 1 of Open University, showing that my ability to concentrate and study has returned at last. I am an artist and work from home selling greetings cards and prints of my paintings. My second knee replacement still hangs over me though, as I know that even more surgery will upset my balance.
A diagnosis at last!
Well, it all started around the age of 15.
I would sleep excessively and everyone thought I was just being a normal teenager. I did have other symptoms such as weight gain but they were not bad at this point, although they were noticeable.
After a couple of months I found the courage to go to the doctor and explain how I was feeling. I was reluctant to explain as I thought it was normal.
She tested my TFT levels and found my TSH level was elevated but my T3/T4 levels were normal and therefore I was not treated. My symptoms then got progressively worse for practically 2 years.
I was getting blood test after blood test but although I was very symptomatic I was getting told “It’s not your thyroid.” or “It’s not in a treatable range.”
This went on for so long that I really wanted to kill myself near the end but then we had a new GP and she finally helped me. She spoke to the endocrinologists for me and got me started on thyroid pills and since she took over my thyroid care I have been progressively getting on the road to recovery. I’m currently on 100mcg of levothyroxine and I am still not at the desired level. She also tested for antibodies.
I would advise anyone not to give up and go round every single doctor until you find one willing to help and be persistent. It’s paid off in the end for me even though I’m not there yet.
I’m almost there in relation to my thyroid and I’m 18 years old now.
My Hypothyroid Diary by Liza
2010: Pre-hypothyroid my adult weight was on average around 150 pounds which at 5’10 suited me just fine and gave me a BMI of around 22 and a dress size of 14-16. I was teaching six days a week, 12 dance classes in the community, plus part-time school teaching. At weekends I often performed dance with my troupe or enjoyed doing all my own DIY and gardening... My attitude to life was ‘just do it’ and very little held me back for long. I knew a lot about activity, nutrition and exercise but I knew nothing about the thyroid. So much was about to change.
Sunday 18th March, 2012 - Diagnosis.
It was late January 2012. I'd been feeling very tired, run down and to be frank, a bit old. I had never felt like this before. I put it down to getting older. When I went to visit my Godmother who is around thirty years older than me, my reaction to cold and my energy levels troubled her. In fact, I couldn't keep up with her. She told me to go and have my thyroid tested. Within days I was called back to the surgery for the result. The doctor told me it was bad news and good news... I had hypothyroidism but it was easily treated. I was relieved by the diagnosis. I felt it was good news and good news. There was a simple reason why I was feeling so rough and I believed it was simple to put right (the doctor said so). I was given some pills and I assumed that things would soon be back to normal…
When I got home, I weighed myself for the first time in two years. I knew I'd put on a bit of weight but didn't realise how much. I was surprised to see I'd put on a third of my body weight and since my vegetarian diet hadn't changed over that time, this was quite impressive - and not in a good way. I decided to look more closely at what had been going on. I thought about my lack of energy, the continual tiredness, the crashing lack of confidence when doing things which had been a part of my everyday life and which now seemed too difficult - teaching, dancing, driving... the strange muscular aches and cramps which came from nowhere and lingered for days, the changes in my classroom management - my inability to multi-task, inability to make clear decisions quickly, inability to 'think on my feet', forgetting names and words and the panic attacks and insomnia.
More recently I was struggling to walk at the end of the day... and when I got out of bed in the morning, my feet didn’t work and I couldn't stand up without holding onto furniture and mobilising my feet for about five minutes. Yes, now I was taking stock it was clear things had not been right for a while but how had I not noticed? So much had changed in so many ways and so slowly I hadn't noticed apart from a vague, 'well I'm getting older, people often put on a bit of weight... its winter, of course I'm cold... '
By early 2012 I was doing nothing, apart from teaching in school two days a week and taking my one evening dance class - and I was struggling to cope with these. In my dance class I stood or sat at the front and directed. I was no longer taking part. When I finally took stock I realised that hypothyroidism had completely changed the way I live and my independence had been eroded so much that I was on the verge of becoming disabled.
Sitting in the doctors’ surgery and being told I had hypothyroidism was actually a relief. It was a relief to put a name to how I felt and to be told that the changes were not permanent. I felt very positive about the diagnosis and I started my treatment - a low dose, 25mcg of levothyroxine. The doctor told me my body would need time to adjust back to having thyroid in my system.
So, one month on... How have things changed? I'm feeling positive about the future and decision making again with more confidence. I can manage physical activities around the house and garden and even if this is only in small bursts of activity, at least it’s something. My skin is less dry and when my muscles ache it's from genuine activity and not just because my muscles always ache. I still get strange little cramps in my hands, legs and feet, but I'm hoping these will go with more time on the thyroid replacement.
Last week, I had two brilliant days at school when, for the first time for a very long time, I didn't have the energy crash at midday. For the past few days I've been able to stand unaided when I get out of bed in the morning and my feet work within a couple of minutes! Things are not yet back as they were, however everything is slowly going in the right direction.
Six weeks later I returned to the GP after my follow-up blood tests, which came back ‘normal’. I thought the cramps may be a sign that I needed more levothyroxine so I asked about this. According to the GP the muscle cramps have nothing to do with being hypothyroid. The GP told me hypothyroids do a lot of imagining. I assumed this meant he couldn't answer my questions. I also asked about my excess weight and was told that this has nothing to do with being hypothyroid. He gave me anti-depressants.
While I tried not to take on board his comments I was angry and confused. This was the first time I had come up against negativity from the healthcare professionals. My GP had no idea that I know a lot about nutrition and exercise. My GP saw an overweight woman and assumed this was a lifestyle choice – or he wanted it to be a lifestyle choice. I was very upset by the attitude of my GP and by a lack of support and realised that I needed to do as much research as possible and become as informed as I could.
Since being diagnosed I’ve been open about my thyroid condition. I’ve discovered several family members have thyroid problems. I’ve now contacted everyone in my family and told them to be more aware. There is no way of predicting who will develop the condition. Hypothyroidism is silent and insidious... I found lots of reasons to explain to myself why I wasn't 'right' without it ever occurring to me that there could be a clinical reason. I'm sure I've had this for a long time and it's disabling and destructive. My advice to others is; become aware of the symptoms, don't make excuses and get tested!
Wednesday 8th August, 2012 - My own Olympic challenge.
I've already written about discovering I had hypothyroidism and the effect this had had on my life. I'm now going to write more about the muscle damage I experienced when undiagnosed and the path to recovery.
The good part; over the past six months I have become more able to cope with my 'normal' day. I rarely get muscular cramps now and I'm not on my knees by 3pm. I can take part in my dance classes - although still at a limited level. I’m no longer gaining weight. I feel reasonably well and happy... and I love my tiny, new garden which I created a little each day during part one of my recovery this spring. After diagnosis, I decided I needed a project to lift my mood so this is my hypothyroid garden. During these months I knew that my level of fitness was at its lowest, however my priorities were to give my thyroid time to return to an acceptable level, to try to stay positive and to regain control of my teaching career which had suffered as a result of my condition. When I was first diagnosed I was warned that recovery can take months.
The not so good part - June 2012; despite feeling better in many ways, my stamina and endurance is shot. I can't go to dance events and cope with more than a few minutes of dancing. After attempting any activity, I’m exhausted the following day. I can't walk far or for long. I can't do the exercise I used to do as my muscles are wasted and the extra weight I gained whilst undiagnosed puts stress on my joints. My leg muscles are so weak I can't get up out of the bath without rolling over onto my greatly enlarged belly and pushing myself onto my knees.
My clothes don't fit as I'm several dress sizes bigger. I'm more than three stone higher than my typical adult weight and my BMI is around 29. Whilst medication with thyroid replacement of T4 has stopped me gaining weight, it hasn’t enabled me to lose any of the excess weight I gained whilst undiagnosed. Everything I wear has elasticated waists and is baggy. My body doesn't look or feel like me. I don't recognise it and I don't like this new body. I resent the changes forced on me - as superficial as they may seem to be. I'm shocked at how quickly this change came about. My body is cumbersome and prone to injuries which seem to appear out of thin air. My muscles are wasted and weak and in their place is soft, spongy flesh which does not effectively support or protect my skeletal-muscular system.
July; I had my first dance performance this year which was great fun but appeared to trigger an injury to my foot where the tendon meets bone. This injury was probably caused by a combination of weight gain, weak muscles, low stamina and unusual exertion. Following this event I couldn't walk without a great deal of pain. I'm fearful that I'll never be able to dance in the future. I put off a visit to the doctor but after three weeks I accepted defeat and went to the surgery expecting to be told again that I'm imagining things. The GP was much more positive. He identified the injury as plantar fasciitis - it was not in my imagination at all - and gave me several pages of information covering causes, treatment, exercises and prevention. He also gave me anti-inflammatories which have worked a treat.
August; I'm not going to settle for a weakened, overweight body, an inactive life and a body which is vulnerable to injury. I'm going to get strong and fit and I'm going to dance again. I've built a new toy - an elliptical X-trainer which is giving me exercise whilst not aggravating my foot injury or stressing my joints. I'm taking whey protein to supplement my vegetarian diet as I begin to regain fitness. The cramps re-appear after exercise, so I'm trying out another protein supplement - creatin monohydrate - to see if its recovery boosting qualities will help. Its early days - a lot of trial and error - and I'm taking it slow with lowest resistance training, gentle, consistent speed and plenty of stretches.
Unfortunately, hot on the heels of the foot injury I got a back injury... while leaning to pull out a weed 'something' went in my back. I suspect it was triggered by the attempt at sit-ups so I won’t be doing those again! I took myself straight to bed and watched the Olympics. I have another two days of inactivity and anti-inflammatories, but I'm thankful that this time I took action to sort it in days instead of weeks. As impatient as I am to resume exercise at the level of two years ago, I'm resigned now to taking recovery slowly. Inspired by those amazing athletes and team GB, I'm now up to a 16 minute session on the X-trainer and my muscles really are getting stronger. I know this because at last, and for the first time in almost a year, I can get up out of the bath without the roll-over onto my knees!
Sunday 20th January, 2013 - One year on!
How well I am now – almost one year on! I feel like my ‘old’ self again – I’m a bit chunkier, but feel well and am happy. My body may look different, but I feel like ‘me’ again!
So, what has happened since my August update? In the summer of 2012, while my foot injury was still healing I was asked to teach an introductory dance workshop for one hour a week at a local health farm to provide some fun for the residents during their week of ‘boot-camp’. This was too good an opportunity to miss and gave me a real boost. I still had something to offer! It lifted my spirits and my confidence began to grow.
On one visit to the health farm I spoke about my condition to the owner and she advised me to look into the impact that nutrition has on hypothyroidism and to consider taking a vitamin supplement, so I began some research. As a result there were some changes I made to my diet. I started to cook all cabbage, broccoli and cauliflower to beyond the crunch, I introduced celery and cut out all soya. As a vegetarian I had been eating a lot of soya and soya based products. I started to check ingredients lists and I found soya hidden in so many unexpected places. I hunted out and eradicated all soya from my diet and after about two weeks I had a surge of well-being and feeling ‘right’ again. Is this a coincidence? I can’t be sure but I won’t be eating soya again.
I decided to keep my lifestyle as consistent as possible. I take my meds first thing in the morning with a mug of warm water. I leave breakfast and my first cuppa for about an hour. I take care to eat well with foods which have high nutritional value. I read that fruit can help the liver produce T3 and I regularly snack on fruit. If possible I walk away from stress and situations which may give me anxiety. I need about seven to eight hours sleep so I aim to be in bed by 11pm each night. The insomnia has gone and I’ve been sleeping soundly through the night again. What bliss a good night’s sleep gives!
I take gentle exercise. It is surprising how quickly muscles begin to strengthen. I noticed in August that I always had a good night’s sleep after I used the cross-trainer – this was the start of sleeping through the night again. I don’t overdo the cross-trainer and in fact I’m now so active again, I rarely use it. I walk several miles, take part in my dance classes and spend several hours cleaning or gardening without problems. The muscle cramps and nightly leg pains have completely gone. I recently treated my belly to an electronic exercise machine since I didn’t want to do sit-ups and risk injury again. Using the machine to stimulate abdominal muscles has helped and an added bonus is that those intestines are really working again!
My confidence and positive outlook on life has returned. I have never been happier. The cherry on the cake is that I passed my latest teaching assessments with flying colours. I feel I have snatched back my teaching career from imminent disaster. I can multi-task again, think on my feet and organise better than ever!
Sunday 19th May 2013 - Flu’ and my first Flare-Up.
Almost immediately after writing my last update, in late January 2013 I had flu’. It left me very drained afterwards and on my return to work, I noticed I had a return of the heavy legs, fatigue and muscle aches. I was unable to continue with my fitness programme and my sleep patterns were disturbed again. The time was approaching for my yearly blood test, so I called the surgery and asked for this. I also asked for my actual TSH figures of 2012. The GP questioned why I needed these figures and told me they are for guidance only, and that GPs place much more importance on symptoms. I was amazed. I told him this made me very pleased to hear, however this had not been my actual experience at times over the past year and I needed to monitor my results for myself.
This conversation ended with me writing in a letter of ‘concern’ to the surgery and I asked that attitudes to patients with hypothyroidism should change. I also got my previous blood test results plus a new blood test and a response from the centre manager promising to raise my concerns with all staff at their next meeting.
During this time I found the list of symptoms on ThyroidUK and decided that I needed to monitor my symptoms several times a year. I used a traffic light colour code system so I could see at a glance which symptoms were improving or getting worse.
The blood test came back with a TSH level of 18.63 (0.35-5.5). Thanks to the research I had done on ThyroidUK I now understood this and the implications. The results also came with an instruction from the GP to take a higher dose of levothyroxine – 50mcg.
This time I knew what to expect during recovery and felt more confident managing the symptoms. I had a return of the cramps and aches, particularly when I felt I needed a top-up of T4. So, this is what I did. After a top-up my cramps always eased off within an hour. If I felt overtired I’d go to bed and get a little sleep – even half an hour of rest made a big difference. This daytime napping also helped if I became very cold. On days when I was in school, I just struggled on. I informed my line managers about my flare-up and they were as supportive as was possible so that I could avoid taking time off.
After four weeks my TSH level had dropped to 3.88 and I was no longer getting muscle cramps. A TSH of nearly 4 is still a little high although after another month it dropped further and I no longer needed the afternoon naps. I felt so well I started running again. I loved running outside - much less boring than the cross-trainer. I even came home from a teaching day and could go out for a run! Just a few weeks before, I was barely able to walk after a school day and within a short space of time on a T4 increase and I was running again! Then... the bad news; a head cold was followed by a knee which 'clicked' then became painful. I have never had a knee injury before, ever. Now anti-inflammatories a support bandage and no more running. I can hardly walk (again) never mind run. Last summer it was plantar fasciitis, I'd never had that before either.
Ok, the thyroid didn't cause these injuries, but the thyroid did cause the weight excess and the muscle weakness and the prolonged periods of extreme fatigue. I won't run again. In future, I'll stick to walking and my cross-trainer and count myself fortunate that I can do this.
It took four weeks for the knee injury to recover, and now I can look again at the weight/BMI issue. This is so frustrating. I’m still more than three stone overweight with a BMI of 29 and I have a thyroid-pot-belly. I cannot seem to lose the weight. This still gets me down.
I avoid stress. I walk away from situations which only a short while ago were ‘battles’ I would have taken on board. Now I have my say and move on. I don’t allow others to draw me into discussions which I know will create stress.
Things aren’t always easy. I no longer take my health for granted and I work at making progress. I’m learning all the time. I feel I have some control over my health again so I’m less anxious about the future. I’m content and I’m enjoying life again. I’m trying to accept and work with the changes being hypothyroid has brought and I’m trying to be positive about the challenges.
Summing up my story so far… ‘Nothing is ever clear in thyroid world’.
I am eternally thankful that my GP did eventually send me for testing, that there is treatment and that I have responded well to this. I’m grateful for all of the information I’ve found on the internet and for the help I’ve received from ThyroidUK. I’m pleased that I’ve learnt how to monitor my symptoms. I’m aware that at present I respond well to T4 monotherapy and seem to have no further medical complications, so I’m very, very lucky.
I never see my thyroid issues as a success story as there's always some new challenge around the corner. I get very frustrated at times by the on-going struggles. Perhaps I need to change my interpretation of ‘success’ and I should measure this by my ability to understand, monitor and manage the condition. I’ve discovered that Hypothyroidism is complex and individual. A ‘one-size-fits-all’ approach doesn’t work and I’m aware that my treatment may need to change in future. I’m getting prepared!
I’ve responded well to medication but also feel that I have helped my healing by looking at areas which were neglected by my GP. I was given no advice about nutrition or exercise and I know that these areas have been important in my wellbeing. My hope for the future is that a more holistic and supportive approach is taken by the medical profession. I’d like to see more support given in managing the condition. Perhaps units, like diabetes centres, need to be established.
I’d like some GPs to improve their ‘bedside manners’. I didn’t need to be told ‘you’re imagining things because you’ve read it on the internet’. Or that you’re ‘too analytical’ or that my GP has ‘just seen someone whose levels are much worse than you – and he’s ok…’ I was given no help in managing my condition and was criticised for trying to find out more. The attitude was ‘take this tablet each day, go away and don’t come back’.
I’m still surprised that some professionals I saw assumed that I knew nothing about weight loss, nutrition or exercise. At times they were dismissive and disinterested in my symptoms and concerns. I’m saddened by the attitude I have encountered which doesn’t speak well for the medical profession and the attitude towards thyroid issues. My condition has not been a ‘life-style choice’.
Last year I needed my GPs to acknowledge my very real aches and pains and re-assure me that this can be part of the path to recovery. This would have given me hope at a time when I needed support and compassion.
I’d like thyroid problems to become more well-known – I had no idea about hypothyroidism before I was diagnosed. It doesn’t seem to be discussed much, yet can affect anyone. When it does hit the news it often seems to be taken as a bit of a joke by some, or as a ‘fashionable’ excuse for weight gain. This trivialisation of thyroid issues is dangerous and undermines the struggles we face with this condition.
My diagnosis came when I was only just into the level where the medical experts in the UK have decided treatment should begin. At this level my underactive thyroid was already taking a heavy toll on my well-being and I was on the way to becoming disabled.
Recovery has not been easy and I wonder if things would have been better if I had been sent for testing when I first visited my GP with stress and panic attacks. It is my opinion that I needed levothyroxine to be given much earlier and when my TSH levels were much lower. So much of the muscle damage I suffered would have been avoided and my weight would have stabilised much sooner. I wonder what other hidden damage has been done as a result of delays in starting T4 medication.
The professionals need to take a closer look at thresholds and symptoms. Treatment and management of the condition should be approached in the way that diabetics manage their condition. Diabetics are encouraged to become knowledgeable, whereas I was discouraged. I suspect that in years to come the medical profession will look back at current treatment of thyroid issues and attitudes in the way we now look at Victorian ideas towards mental health.
My advice now is ‘get educated’. Thyroid conditions are for life. Aim for ‘optimal’ treatment and don’t accept less.
I wanted to share something. I had my Levothyroxine reduced just over 7 years ago from 150mcg down to 100mcg purely on the basis of the TSH. At the time I had only a basic understanding of my situation as a post-total thyroidectomy patient.
I had been quite well on 150mcg, working (2 jobs part of the time) and leading a normal life with only some pain in arms and legs, which I accepted in my lack of knowledge. I had a medical at the age of 60 and was given a clean bill of health with a healthy cholesterol level of 4.7 and no cardiovascular problems, just slightly overweight but not obese.
Then relocation and a change of doctor changed everything.
In November 2005 my levothyroxine was reduced. I protested that I did not 'feel' overdosed - I should know, I was thyrotoxic at age 18! But he insisted and so I complied.
In January 2006 only about 8 weeks later I had a series of TIAs (Mini Strokes) and they were happening every few weeks. I went to the doctor and he checked my cholesterol. 9.7! He put me on Simvastatin, blood thinners, PPIs (my stomach could not cope with the blood thinners) and as time went on the mild and occasional asthma I had suffered since my early 20s turned into constant fighting for breath and I had to use two kinds of inhaler, and anti-histamine tablets.
I was unable to sleep so he gave me amitriptyline, which I never took. I had IBS so he gave me Buscopan, which did no good so he gave me strong codeine. One year I went on holiday and I had constant complete loss of bowel control and was taking codeine every day just to enable me to go out. He sent me for a colonoscopy, which revealed no underlying disease.
Next I started to become agoraphobic. Then I became depressed because not only had I put on three stones, but I was unable to walk and was suffering intense, unremitting pain in my leg muscles. This was continuing with my visiting the doctor every two weeks or so with a new ailment.
At one point the pain in my legs (far worse than the hypo pain I had had for 27 years or more) was so bad that I went to the doctor and asked to go to hospital. When I told him what was happening, he said to stop the Statins as they were in danger of causing Rhabdomyolysis. I stopped the Statins and my cholesterol (which had fallen to 4.8 - nearly as low as before he reduced my thyroxine!) rose again, to 10.2.
I was having terrible palpitations and rapid and irregular heartbeat (sometimes up to 190bpm) Never once did the doctor ever suggest it could be connected with the thyroxine reduction. He was happy because the mini-strokes had stopped. Never mind that I could barely function.
I was now nearly 4 stone over my ideal weight and severely depressed. He offered me anti-depressants, which I refused. I knew that it was time to do something; I had aged 20 years in seven! At that point I found Thyroid UK. I read all I could and started to tell the doctor I needed more thyroxine, to no avail. I bought Dr Toft's book and took it with me last December and absolutely insisted that he increase my thyroxine. He agreed to an increase to 125mcg.
Within 2 months I started to lose a little weight, my constant bowel problems were starting to ease, my cholesterol went down to 8, my breathing improved, I was no longer depressed, I started to sleep better, I even managed to do some housework. The palpitations were still there but usually no faster than 150bpm.
Good news, you might think? No.
The doctor was unhappy with my low TSH and suggested I go back to 100mcg. I refused. In fact I said I should go to 150. No way! He sent me away with a flea in my ear, but not before informing me that the chest X-ray he sent me for because of my constant cough, had revealed that my heart was enlarged. Coupled with the results of an earlier investigation that showed I had Mitral Valve Prolapse. With this in mind he was not prepared to risk giving me a heart attack just because I didn't like putting on weight.
I came home and looked up the possible cause of my heart enlargement. High blood pressure? Never had it. Smoking? Never did it. Inflammation? No. Under treated hypothyroidism? Bingo.
Now to today.
Over the three months since I saw the Doctor I have decided to increase my medication very, very carefully. Just half a 25mcg tablet every few weeks. My palpitations have continued but gradually lessening, going to just over 100, still often irregular, but much, much better than they were.
I am now back to 150mcg, this is only the third day but I have had more energy, much happier, my breathing is much better (I have had some wheezes in the last week or so but that is normal for me at this time of year), I have so far lost 9lbs and I can see a difference in my face. My total medication now consists of: 150mcg Levothyroxine, Clopidogrel and Lansoprazole, plus antihistamines in the summer and an inhaler some of the time.
If I stop having the irregular heartbeat I shall try to stop the Clopidogrel and then the Lansoprazole. I will be back to where I was before the doctor tried to kill me. The next step will be to see Dr BDP to see if he feels I could take some form of NDT because I still have some muscle pain and my weight loss has stalled.
My private blood tests that I had done in April reveal that I am converting only at a ratio of 6:1 so that although my T4 is high, my T3 is fairly low:
THYROID STIMULATING HORMONE *0.07 mIU/L (0.27 - 4.2)
FREE THYROXINE *24.6 pmol/l (12.0 - 22.0)
FREE T3 4.5 pmol/L (3.1 - 6.8)
(This was when I was on 125mcg Levothyroxine. And the doctor wanted to reduce it again!)
Truthfully although I know there is a way to go, I feel very happy and grateful that with the advice and knowledge gained from Thyroid UK, I have started on the road back to health, I will be able to live again before it is too late. I feel now that there is hope for me.
Thank you, Thyroid UK
On 17th April 2013, Lyn Mynott conducted an interview with
one of the ladies responsible for the Scottish Parliament Petition.
Information about the Scottish Thyroid Petition can be found in our campaigns section here
Lorraine: I became very ill and very thin immediately after my only child was born and had repeated visits to doctor. I was told it was viral. It was only a year later, when I weighed about 6 stone and had an obvious goitre, that I was referred to an endocrinologist.
Lyn: So when you eventually saw the endocrinologist, were you diagnosed with anything?
Lorraine: He did some antibody tests and I was then diagnosed with Graves Disease.
Lyn: Did the treatment for Graves’ disease work very well? Did you improve?
Lorraine: Yes, carbimazole worked very well and I became stable quite quickly. However, they took me off carbimazole 6 months later and I became hyperthyroid again so he advised me to have my thyroid removed.
I was supposed to have a sub-total thyroidectomy in the hope that the remaining half would function as a normal thyroid but post surgery, I had a haematoma and almost suffocated. I had to have an emergency evacuation of the haematoma whilst wide awake and with no pain relief. The surgery lasted 8 hrs during which I lost my parathyroid glands and the remaining thyroid gland died atrophied with the trauma.
Lyn: That sounds awful! What happened after the operation?
Lorraine: In the weeks afterwards, I started to develop symptoms – I was always cold and tired and I my hair was falling out in clumps. I suggested to my doctor that I must be hypothyroid now and I was told that it was not likely. They did tell me that it might have been the trauma of the two operations in 24 hours. I think it was finally four months after surgery that they acknowledged that I had hypothyroidism and gave me some medication, by which time I was almost completely bald.
Lyn: Unfortunately, many patients have similar symptoms after thyroidectomy and are not treated. What happened then?
Lorraine: They then put me onto levothyroxine.
Lyn: Did you do well on levothyroxine?
Lorraine: I did fine on levothyroxine for about 5/6 months and then I started to have chest pain, palpitations, weight gain, joint pain, hair loss again, ringing in my ears. I had so many disparate symptoms which they told me was nothing to do with the thyroid.
Lyn: How long did that go on for?
Lorraine: Some time. I went downhill further so my GP was at a loss because she trusted the endocrinologist who said it wasn’t thyroid related. My bloods were normal so she sent me to a rheumatologist for the crippling joint pain and he diagnosed me with fibromyalgia without touching me or taking my blood for testing or checking my blood pressure. He didn’t get off his chair. In five minutes I had a diagnosis of fibromyalgia and a prescription for tramadol.
Lyn: This is a common problem. Doctors do various tests and they come back normal and many people are diagnosed with either fibromyalgia or ME. What happened after your diagnosis?
Lorraine: I still trusted the medical establishment and I thought I would have to learn to live with Graves’ disease, hypothyroidism, hypoparathyroidism and fibromyalgia.
As the months turned into years, I develped panic attacks, really shocking panic attacks that would come out of the blue. I had tachycardia, ectopic heartbeats, obesity, high cholesterol, high blood pressure.
Finally, I was about to commit suicide a year and a half ago. I just could not continue living a half a life. I slept for 20 hrs out of 24.
Lyn: That’s very sad. What changed your mind?
Lorraine: My husband found Thyroid UK and its online community, HealthUnlocked, and I started to read and I could not believe what I was reading because most people on there were the same as me and I finally realised this was all thyroid related after all.
I read all the information on Thyroid UK and I learned that I possibly had a problem with my thyroxine not converting. I saw Dr Skinner and a blood test confirmed that I wasn’t converting and Dr Skinner suggested T3. However, my GP had previously suggested T3 and I had tried it and hadn’t got on with it.
Dr Skinner then prescribed me natural desiccated thyroid (Erfa) and it saved my life.
Lyn: Well, Lorraine, that’s a story and a half, isn’t it?
Lorraine: Yes, it’s a success story isn’t it?
Lyn: So, now you are on Erfa, what other medications are you taking?
Lorraine: Well, I was on betablockers, tramadole, antidepressants, sleeping tablets, non steroid anti-inflammatory tablets and inhalers. I was on so many meds when I was taking levothyroxine. Now, I just take Erfa – I don‘t need the other meds.
Lyn: That’s such good news! Has there been any other treatment that has made a difference to you apart from Erfa?
Lorraine: Well, learning about my depleted vitamin and mineral status has been a huge benefit because my iron, Vitamin B12 and Vitamin D were all very low. Supplementing with those and selenium has made a massive difference to my life and my health.
Lyn: That sounds really good. What made you start looking into your vitamin and mineral status?
Lorraine: Well, it was the people on the Thyroid UK online community, HealthUnlocked really. Regular contributors to the site were really patient with me and didn’t bombard me with too much info. They went through it stage by stage because it took a long time for information to stick because I was so ill and my brain fog was so bad.
Once I was on Erfa, I started slowly on that and then I started to address my low iron, Vitamin B12 and Vitamin D.
Lyn: So, once you were on Erfa and your vitamins and minerals, how did this affect you?
Lorraine: I improved 100%. I lost 3stone, my blood pressure is now perfect as is my cholesterol. I don’t sleep more than 7 hours a night now and I have a social life again. I am no longer a hermit and I have my “fight” back.
Lyn: I am so pleased to hear that. What made you join Sandra and Marian in petitioning the Scottish Parliament last year?
Lorraine: Well, I originally was going to petition them about the difficulty I have accessing my thyroid medication. Dr Skinner is my prescriber and he is repeatedly called before the GMC. If anything happened to him I would have great difficulty in accessing my lifesaving medication. My GP said she was unable to prescribe it because it was unlicenced.
So I spoke with my Member Scottish Parliament (MSP) and he advised me to petition the Scottish Parliament. While I was compiling that, a mutual friend had already been in touch with Marian and Sandra about another matter and he knew they were petitioning the Scottish Parliament because of their own thyroid problems and he put us in touch with each other. We then decided that we would be stronger if we worked together. The Scottish Parliament only accepts one petition on any one subject per year so this was a good way for the three of us to get the bigger picture heard.
Lyn: After you attended the meeting at the Scottish Parliament, they asked several organisations to write submissions about their views on the petition and the problem of thyroid diagnosis and treatment. Thyroid UK was asked, among others, to send in their submission. The Royal College of Physicians and the World Health Organisation were also asked to submit their views. They did not, however, respond at all. Why do you think that is?
Lorraine: Honestly, I think that they are aware that this is a massive issue, a potential health scandal and in having an open and honest dialogue, it may be that they would be forced to admit previous errors in their way of thinking and treating thyroid disorders.
Now, that’s natural, because medicine does make wrong turns, and things are revised and treatments are changed. I’m very unsure why they are so unwilling to look at this issue again. My only inkling is that it is predominantly a female issue and we consume a lot of medications when we are not properly medicated for all the accompanying symptoms so, who knows, maybe it’s just too big an issue.
By not replying to the Scottish Parliament’s question though, I think it shows the contempt with which we are held as a community.
Lyn: It does seem strange that they haven’t responded especially since they quote on their website, “We are a forward-looking organisation, relentless in our pursuit of improvements in healthcare and the health of the population.”
There was another Public Petition Committee meeting on Tuesday 16 April 2013 that you and Sandra attended. Tell me about that.
Lorraine: That was a very successful meeting. The meeting was held in order that the committee decide whether the petition should be carried forward or to close it down. They decided it was a serious issue and that they wanted a short-life working group set up to examine all the available clinical evidence on the treatment of patients suffering from thyroid and adrenal disorders. The reason for the short-life working group is because if they don’t put a timescale on it these things can rumble on indefinitely.
At the meeting, John Wilson, MSP, stated, “The recommendation is that we ask the Scottish Government to establish a short-life working group to look at the issue, but if it is not prepared to do that I am keen that we get an assurance that one of those committees would carry out such an inquiry, because I would not want us to pass the petition on to either committee only for it to shut down the petition. In such circumstances, we would have no recourse—we could not reopen it”
He also showed his concern that this petition progressed when he said, “It would be useful for us to agree to write to the Scottish Government to ask whether it would be minded to set up a short-life working group. If it is not minded to do so, we should find the time to carry out an inquiry.”
Elaine Smith, MSP, who spoke for us at that meeting informed us afterwards that two further thyroid patients had committed suicide this year and it’s just too serious to let it go.
Lyn: That’s so sad. We need this petition to change things, don’t we?
Lorraine: Yes. This is a serious issue. When I contemplated suicide, I had counted the tablets and I had them stored and ready to go. Thank God my husband found the Thyroid UK site and the online community because if you don’t know that your myriad of problems are thyroid related and your GP or endocrinologist tells you it’s nothing to do with your thyroid, you are going to believe that you are mentally ill or seriously ill and no one is going to help you. So this is a life or death situation for many, many people.
The Scottish medical establishment and the Scottish Government have a history of groundbreaking decisions in medicine – Dolly, the sheep is just one example. They are very advanced and have a very good reputation for dealing with medical issues and I think, if Scotland makes changes, the rest of the world will follow.
Lyn: I do hope so. The problems of thyroid disease and adrenal diagnosis and treatment would not have got this far without you, Sandra and Marian taking it to the Scottish Parliament. You are all so brave to be doing this and Thyroid UK takes its hats off to you.
Lorraine: We wouldn’t have got this far if it hadn’t been for finding Thyroid UK because I wouldn’t have survived. I know that sounds gushing and extreme but I really had not the first clue about where to go with my health. I had private healthcare so I saw the supposed best endocrinologists available and I became more and more ill so finding the right information, a good doctor and the correct meds saved my life.
Lyn: I’m so pleased that we helped you and thank you so much for allowing us to interview you.
Information about the Scottish Thyroid Petition can be found in our campaigns section here
Like many other thyroid sufferers, I am not sure how long I have been hypothyroid. However if I look back on my life I can pin-point it way back in my life and perhaps in my teen years. Things, however, became more apparent approximately 15 years ago and the last 3 years before my diagnosis were horribly miserable.
I have always struggled with controlling my weight. I am one of those people who gained weight on Weight Watchers!
I had my son at the age of 25 and soon after that the weight piled on and on, my confidence fell underground (unusual of me as I have always been a very confident person), I started becoming more and more ‘recluse’, not wanting to go out, ‘hating’ people and developed a real phobia of people in general.
I started getting frequent tonsillitis. I would get rid of one episode and within a week I’d get it again. Mostly, it was so severe I could hardly drink! I was getting recurrent conjunctivitis too, again every other week!
Having reached ‘desperation point’, I had a tonsillectomy and had bariatric surgery TWICE - the first time I had a ‘lap-band’ placed around my stomach (known as gastric banding), the second time a gastric bypass. With the first procedure I lost all of my excess weight but then piled it on (on eating healthy food!). The gastric bypass was a failure. I lost a little of my excess weight but could never go below 86 kilos.
I was plagued with plantar fasciitis too at my heaviest weight.
Throughout all this I was a single mother, suffering from sciatica and extremely bad back pain. I could not even dress myself. My son, who was 3 years old, had to dress me and wash me!
I then hit financial difficulties and had to increase my hours at work. I had to start working 6 days a week.
Around the same time, I became severely fatigued. My body felt as it was full of lead! I could hardly walk. My mind was getting slower and I was scared I would make mistakes at work as my memory also was declining badly.
I never suffered from the cold but I started feeling FROZEN inside my own house with the central heating on. There would be a temperature of 22 degrees but I was still freezing! I had, as routine, my electric blanket on 12 months of the year. Around the house I was wearing a thermal vest (long sleeved), long sleeved t-shirt, a jumper, trousers, normal socks with thermal socks on top, gloves, scarf and hat and would still be ‘shaking’ from the cold!
Whenever I went for my routine post gastric bypass checks I saw an endocrinologist in the team and I told him about my fatigue and my cold intolerance. He dismissed it, saying I worked too hard and ‘It’s a cold winter.’ However, I was cold IN THE HOUSE with the heating on, he still dismissed it!
I was found to be vitamin B12 deficient and to have pernicious anaemia. He said that would help my fatigue, however, the cold was not down to that.
Vitamin B12 supplementation did help my fatigue but I was still way too fatigued. Whenever anyone asked, ‘How are you?’ my typical and only answer was ‘TIRED’ - I sounded like a broken record!
Of course, I was blaming my tiredness on working 6 days a week, although it was a ‘desk job’. However, if I was not at work I’d sleep 8 hours every night and just sit on my couch the rest of the time as I had NO ENERGY, not even enough to boil some water for dinner!
I regularly checked my thyroid every year as I was aware that feeling cold and tired are some signs of hypothyroidism but my bloods always came back ‘in range’.
Then, finally, in January 2012, on one of the many occasions whilst I was ‘moaning’ to my friends about how cold and tired I was, one of them said, ‘Are you sure it is not your thyroid??’. I said, ‘I am sure - my bloods are normal’…. However, my friend had put a thought in my head so I started searching the internet for hypothyroidism.
I came across many helpful sites including Thyroid UK and I joined the TUK forum on HealthUnlocked. There were many helpful posts and one of them said about the circadian rhythm and how the TSH is higher early in the morning.
With that ‘tip’ I had my thyroid function tests repeated very early in the morning and this time my TSH came back only just above normal range! I was SO RELIEVED. There ‘may’ be an answer to my problem after all!
With those results and lots of information found through the help of members on the Thyroid UK forum I went to see my GP who did offer a ‘trial’ of levothyroxine. However, my GP, like many others, has an approach of treating by blood results and being very ‘conservative’ with the trial, she wanted to start me on 25mcg and then keep me on that dose for 12 weeks.
I sought the help of a private doctor recommended by Thyroid UK and with this doctor’s help I agreed with my GP to start at 50mcg and to raise much more quickly then originally agreed.
However, having arrived at 150mcg of thyroxine I started feeling worse with still some hypothyroid symptoms left.
I went to see another private doctor on TUK list and started NDT (natural desiccated thyroid hormone). I improved virtually straight away, although having raised my dosages in the way prescribed by the private doctor and having arrived at a dose of 3.5 grains, I started again getting some negative symptoms and still had some hypothyroid symptoms left.
I had a reverse T3 test done which came back high and based on this and my symptoms, we switched to T3 only therapy in May 2012. By the end of August I was finally relieved of all my hypothyroid symptoms.
Then, once I was stable, I went to see my GP to see if I could get my T3 prescribed on the NHS. The answer was ‘no’ immediately. The GP would not follow the recommendations of the private doctor. He was, though, willing to refer me to an NHS endocrinologist.
I asked around of other TUK members for recommendations on an NHS endo and when I found one who sounded like might be able to help me, I asked the GP to refer me to him.
I am now under the care of an NHS endocrinologist and he has asked my GP to prescribe my T3. He has asked exactly the same as my private doctor but this time the GP was happy to prescribe it! I now receive my T3 on the NHS, the whole 160mcg of it.
It has been a long battle but it was worth it. It was very frustrating for a while, especially with the GP not wanting to follow my private doctor’s recommendations yet she was happy to follow them once an NHS endocrinologist told her to (exactly the same recommendations!).
I surely would not have been able to do it all alone. TUK was the prime factor. Without TUK and the help of its members, I would not have got there as quickly or maybe not at all.
I now NEVER use my electric blanket in bed. For the first time in years I have hardly ever felt cold this winter, only on a couple of occasions but this was ‘outside’ in the ice and snow and temperatures of ‘sub-zero’!
I used to open my bowels 3 times a week and now it is every day, my dry skin has virtually all gone,
my memory has improved and my dexterity is so much better.
I notice this especially on the violin. I have been learning to play the violin for 4 years and I always ‘struggled’ to do things and remember them but now, like ‘magic’, I have improved significantly and can do things on the instrument I could not do before - my fingers do what they are told now!
I must emphasise that it has to be an ‘all around approach’ as I only got better by looking at ‘everything’ my body needed. I found I was vitamin B12 deficient and vitamin D deficient and had to fix that too or my thyroid also would have never been ‘fixed’
It is important to look at the ‘whole’ picture.
Thank you, Thyroid UK, for helping us thyroid sufferers and helping in raising awareness.
I first went to the GP after 2 years and 6 months of suffering from extreme fatigue, menstrual irregularities, skin & hair changes, lack of confidence/personality changes, digestive problems, constantly being freezing cold, night sweats, loss of libido, weight gain, anaemia and lack of thirst. I have a family history on my maternal side of underactive thyroid. My TSH at my first GP visit was 3, which I was told was normal.
At the time I accepted this, and there followed 2 years of GP & specialist visits at which I was told I needed anti-depressants (despite doing the GP test which showed I was not at all depressed), then that I probably had a virus, or that I was menopausal, or had polycystic ovaries (no evidence of this but they were happy to prescribe metformin for no reason!), then that I might have IBS (again despite no symptoms at all) and eventually that I was just tired because I have 3 children.
During this time I researched and discovered the Thyroid UK website and others which suggested that a TSH of 3 and a bottom of 'normal' range T3 &T4, with all the symptoms of low thyroid, probably meant I actually DID have a low thyroid.
My GP and specialist, however, refused to countenance this and refused to allow me a trial of thyroxine despite my pleas that I couldn't carry on feeling so awful all day, every day. They insisted that a TSH of 3 is 'normal' and therefore my problems must be in my head.
Endless blood tests later, they eventually pretty much told me to go away and put up with it and stop being unrealistic about how a generally healthy, fit, 39 year old woman should feel.
6 weeks ago I went to a private GP, in desperation, told him the whole long sorry history and showed him all the test results and he said "You've got an underactive thyroid, have some levothyroxine, you'll feel much better in a month or so".
I've now been taking 50mg levothyroxine daily for 6 weeks and feel 50-75% better. My GP has asked me to return after 3 months for blood tests and a review of dosage.
The worst symptoms of fatigue and coldness have improved dramatically and I feel like I have my personality back. In the last 2 years, I have forgotten what 'normal' feels like. My husband and children are also delighted to have the 'normal' me back!
I'm very grateful for the info I found on the Thyroid UK website (and on 'Stop the Thyroid Madness website) which persuaded me that I wasn't actually going mad or inventing symptoms.
I also feel that I'm extremely lucky to have found a private GP who was willing to help. I honestly could not have carried on for another day feeling as bad as I was.
The next step, however, is the battle to persuade my own GP to prescribe me thyroxine, as obviously the costs of seeing a private GP and private prescriptions are prohibitive...