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Case Studies - Hypothyroidism

sharing storyWe are collecting case studies from people who have become well through taking thyroid medication, and from people who are still suffering symptoms of thyroid disease despite taking thyroid medication.

If you would like us to use your story as a case study, you can submit it to us online here

Well where do I start ?

I was diagnosed with hypothyroidism about 12 years ago. I started treatment through my GP.  I did feel slightly better initially but certainly not WELL.

The usual round of doctor’s appointments, tests, being offered anti-depressants etc. etc. - the story many of us know so well.

I read everything I could lay my eyes on and in desperation eventually went off to Denver to consult Dr Lowe.

Of course, it was not that simple really.  I had been so ill that I was not sure I could cope with the flight etc but I had to try.

I came home with natural thyroid, B12 injections and lots of other supplements and advice.  For a few months I thought I had wasted my money but slowly, very slowly I did improve somewhat.

To be totally honest, I am not sure how much or for how long the benefits lasted because after a year my prescriptions from Dr Lowe’s colleague ran out and my GP had refused to treat me if I insisted on following Dr Lowe’s advice and not his.

So I did what I had to do, used what I had from America and just let my GP think he had convinced me he was right. I had no energy to fight and he would not read my printed information.

I was eventually diagnosed with pernicious anaemia and given B12 injections every 12 weeks. Then, after massive begging every 10 weeks (not much change there then) I insisted on a hospital referral and asked to be treated with T3.  I was refused on the grounds of being "borderline".

Since then I have just carried on existing with Goldshield thyroxine, which is the only one that did not seesaw my levels too ridiculously. I had no adrenal support of course by now.

I could not afford to go back to the US and just got sicker and sicker and could not manage to make it to see Dr Peatfield or anyone. I became housebound, depressed and non-functional.

About four years ago, my GP referred me to a rheumatologist because I was in so much pain and so fatigued.

Luckily for me, I saw the consultant’s house officer who was young and up to date and not trained in the UK.  I say luckily because she was open to listening to me and really took notice when I explained my pain and immediately diagnosed fibromyalgia (FM) as well as some moderate rheumatoid arthritis.
Unfortunately at my next appointment her boss told me there is no such thing as fibromyalgia and it is all in my mind!

The lovely house officer has left the department so no further help there.

Two years ago I had a TIA (mini stroke) and have to say that I was treated fantastically by the stroke team.  The consultant did not just treat me for the stroke but went right through my medical history and sent me for endless tests to Papworth Heart Hospital and also ordered test after test. He really cared.

I was put on statins, beta blockers and aspirin; my fibromyalgia meds were changed. I am on butrans patches and gabapentin plus tramadol for pain.

My GP diagnosed diabetes type 2 soon after this but I am totally convinced I am still suffering only from hypoglycaemia, as I have for many years.

I was offered no treatment for the diabetes and only offered metformin to keep my weight in check.  I said no thanks because, although I am overweight, I take too many meds already!

So having spent the past years in a state of breathing but not living, my husband finally insisted I seek more help and we decided to try Dr Myhill’s regime.

I went onto the stone-age diet, which I found really tough, as I felt nauseous most of the time, so had been living on bread and dry toast or crackers.  Fruit when I could face it but not much else.

Aware that this was causing further fatigue and storing up more problems, I have tried to be honest with Dr Myhill and am doing my best to eat a sensible diet on her recommendation of lots of protein (I hate meat and she wants me to avoid dairy so no cheese) and very low carbs - that’s hard too. Regular meals, regular sleep, both of which are difficult but I am trying.

So, to get to the point, my initial contact with Dr Myhill resulted in my sending in a complete questionnaire with as much medical history as I could.

I was then contacted and advised to have the mitochondrial test.  The test kits were sent out to me and I got blood taken at my local BMI hospital, as I knew my GP surgery would be "difficult".

Dr Myhill insists on contacting your GP so I had briefly spoken to him saying I wanted to try her approach of diet and supplements etc.  Again I used the easy way and kept the information about possible B12 injections to myself.

When the results came back Dr Myhill wrote to my GP (and me) with recommendations.  She said my results were extremely poor and wanted to give me daily B12 as it helps so many people with fatigue, she also said my magnesium is very low and so much else.

She asked my GP to supply B12 for me to inject daily and also magnesium to inject daily for at least 2 months then maybe tail it down. The other recommendations are supplements, which do not require prescriptions so although she listed them they would not really concern my GP.  He has not been in touch and neither have I.

I ordered my injections from Dr Myhill on private prescription and she wrote to my GP again (copy to me) to tell him.

She advises only one thing at a time so I began with the B12, two weeks later I started the magnesium injections.

I have D-Ribose, ascorbic acid, B3 vitamin D, selenium Co-Enzyme Q10, niacinomide plus Dr Myhill’s own multi-vitamins and minerals.

These are all just for starters and it will obviously be some weeks getting into the whole regime.  I have been very bad at taking care of myself since being so unwell but this time I have to do it. The cost for this first stage of the tests, the doctor’s time and the prescriptions and supplements was over £500 so I cannot waste this chance. It was money we had saved for a holiday but I have not been well enough to cope with a holiday so hopefully this will be money well spent.

I know that Dr Myhill has a 6 month waiting list for face-to-face appointments but doing it this way was the only way for me at the moment and the girls in her office are lovely and will get an answer to any questions as soon as possible and always get back to me when they say they will, so here’s hoping I will be able to write in a few months telling you all how well I am doing.

I know this is a long haul but at 60 I really felt my life was over so any improvement will be welcome.  I will update you as time goes on.

Dr Myhill has said that she thinks my 250mcgs of thyroxine might be under-dosing but she wants to get the basics in place before trying to tweak my thyroxine (another GP battle I suspect).

Take care and bless you and all the girls for being there for us.

5 August 2012

When I was in my late 20s I was diagnosed with an overactive thyroid and treated with low dosage valium for a short period but I believe my thyroid had been defective as a teenager as I had very bad skin and other symptoms. 

Going forward to my late 40s blood tests were done on my thyroid function and TSH was at the top end of over 5  but despite struggling with my weight, low blood temperature and blood pressure, nothing was done and I was unaware anything could be done. 

I complained about feeling something in my throat and was referred to an ENT specialist, who ignored my, by then, obvious thyroid problem and performed an endoscopy under a general anaesthetic.  Clearly nothing was found and nobody suggested that what I was feeling was a nodule on my thyroid. 

I was constantly tired, bad tempered and depressed. 

About 8 years ago (aged 54) a new GP (a very experienced locum) took one look at me and said “what is wrong with your thyroid?”  He took blood tests and said that he expected they would come back normal, but that I should be on thyroxine.  The results did come back normal but he put me on 25 mcg thyroxine and I immediately felt better. 

A young inexperienced locum then wanted to take me off the thyroxine saying it was illegal for me to be on thyroxine as my test results were normal and said that I should diet (never a good thing for someone with hypothyroidism).  I insisted that practice GP be consulted, and the main (new – not the previous locum) GP came to the consulting room and suggested that they take tests for autoimmune thyroid disease and referred me to a consultant endocrinologist who has carefully managed the levels of thyroxine.

An MRI scan revealed the lump in my throat was a nodule – which has remained unchanged.. 

I am now stable on 50mcg 4 days a week and 75 mcg at weekends.  I take some herbal adrenal support, when I feel it necessary (which I get from US) plus multivitamin, B complex, Ginkgo (for the memory), Evening Primrose oil and coconut oil. 

I no longer need sleeps during the day, my mood swings are better, and I am losing weight slowly but steadily by sensible eating (about 3 lbs a month).  I do think that my adrenal gland has suffered from the lack of proper treatment to my thyroid in my 40s but as the UK does not treat adrenals I have to travel back from US with self medication.

24/08/2012

Since I had my daughter, 21yrs ago, my health gradually deteriorated. Over the space of 15 years I went from a healthy 10st to a very deadly 5st. How I woke from the sleep I fell into, I don’t know. I woke to find myself in hospital.

I couldn’t eat or walk. Gradually, I started to eat again and was on a list of medicines I'd never heard of, one being levothyroxine.

Apparently, I had been diagnosed with an underactive thyroid. I had been going to my doctor for years trying to find out what was wrong. I was labelled a hypochondriac.

It took an almost fatal collapse to find out what was wrong. I had no faith in the NHS at all until my boyfriend changed my doctor and got me all the medicines I needed.

Until recently I was thriving. Now I’m being told that my thyroxine liquid is too costly for my doctor’s budget. I've been put on tablets which make me feel terribly sick. I've been trying to find other options to no avail.

I hope no-one else out there has had it this rough. I wouldn’t wish this on my worst enemy.

30/5/2012

Stella's Story

My story started in 1987 just after the birth of my son. He was a colicky baby and I wasn't coping. The health visitor said that he was bored.  At 3 weeks old, I think not.

I got depressed and the GP said it was post natal depression and that I should get my mother to come and stay.  In a studio flat, where I lived, this wasn't an option and we couldn't go to her either as she had just remarried and she and I never got on very well anyway.

We moved to a bigger flat in a different area and our new GP asked if I had a history of thyroid problems and I recalled that I had been told I had an overactive thyroid in my teens but nothing was ever suggested for treatment.

Tests were done and came back showing that I was hypothyroid, which explained the tiredness, weight gain, dry skin and depression.  I was started on thyroxine, lost the excess weight, no longer felt depressed and regular tests showed that I no longer needed the thyroxine - I was cured.

After a few years and the birth of my daughter, I started getting symptoms again and was put back on thyroxine.  I felt worse.  Blood tests showed a need for more thyroxine and over a few years I went from 25mcg to 175mcg, all the time feeling worse.  I was constantly tired and weight was piling on, even though I ate a good healthy diet.  I was training in nutrition so I wasn't impressed when the endocrinologist told me to stop eating so much, get some exercise and see a dietician. I was doing a physical job and hardly ate at all!

At that time I was on my feet all day working as a chef.  I was sure that the thyroxine was making me worse so I stopped taking it and actually felt better for 6 years.

In 2007 I changed my job and had a few family issues. Life became quite stressful and I took a nosedive health wise.  I was off work and the GP I saw told me to take a few weeks off so I took two weeks off and went back with conditions in place to adjust back into it.

As time has gone on my dose of thyroxine has again increased.  I'm now taking 125mcg thyroxine each morning and not feeling well at all.  I have been back to the GP several times and he says that because my blood results are 'normal' it's not my thyroid and has referred me to mental health, not the consultant endocrinologist.

That, along with pressure at work to do overtime, irregular hours and the threat of being 'stepped down or managed out because of your health', is just adding to the pile.

My symptoms include difficulty swallowing, painful feet and legs, constantly tired, dry and itchy skin, intolerance to alcohol, caffeine, wheat, dairy, beef, tea and eggs, weight gain and inability to lose weight, eyelashes falling out and lack of energy.

Jump forward to 2012 and I’m now on my feet all day working as a chef and building my business as a nutritional therapy practitioner, I qualified as a nutritional therapist in 2010. During my research I have found several nutritional approaches to dealing with thyroid problems. I have now been following a low GL eating plan with some supplements and have been feeling much more energetic. I have lost a stone in weight and my skin is improving. My recent blood tests showed that I had way too much T4 and a need to reduce my medication.

As a nutritional therapist, I will be specialising in thyroid and other endocrine disorders such as diabetes, autoimmune health, digestive problems, weight management, CFS and fibromyalgia along with general nutritional advice.

20/05/2010