By Helena R Green
There is little point in going back to see your doctor unless you go with the information he needs. Going back and simply saying, “I don’t feel well” is not really very helpful. Nor is the expectation that the doctor is going to be able to tease out the relevant facts from a long narrative about everything that is not right in your life. If you are going to try and have a useful dialogue with your doctor about whether you should have more thyroid tests and/or change your medication, you need to provide him with specific information from which decisions can be made.
You are the main source of clinical (observable) information on your thyroid condition. You need to present your information as clearly and briefly as possible. Writing everything down is probably the best way. You have to tell him how you feel and what have been happening to you. You will need to do some preparation in advance of your appointment. The following are the areas of information that you need to concentrate on: -
- The symptoms that are still troubling you.
- The way these symptoms are affecting the quality of your life.
- Questions you wish the doctor to answer.
- Blood test results.
1. The symptoms that are still troubling you - These may be the same ones that you had when you got your diagnosis or ones that have appeared more recently. There is no benefit in keeping a day-to-day account of your symptoms but you need to list them so that you detail which you are experiencing. It is not enough just to say you are cold and that your legs ache. You need to be more specific - “I am cold all the time and at night I sleep with a cardigan and an extra eiderdown”; “Legs ache so much I have to sit down after walking 200 yards down the road”.
Your observations will probably come under the following “symptom areas”: -
- Energy levels - e.g. lethargy, dozing off, and restlessness
- Digestive system - e.g. diarrhoea, constipation
- Menstrual cycle
- Sex drive and interest
- Muscles & joints - e.g. weakness, swelling, cramps
- Skin, hair and nail condition
- Eyes
- Goitre
- Mental state including memory, concentration, muzziness etc
- Emotional state including mood swings, “lows”, etc
- General state of health - e.g. getting colds, bad throats
Dr Rowan Hillson in her book, Thyroid Disorders, suggests that thyroid sufferers make a few regular observations. Take note of:
- your pulse - its rate, rhythm (and thumpiness);
- your weight;
- for hyperactive thyroidians, tremor (a trembling little finger on her left hand indicates to one thyroidian that her thyroid is overactive!);
- for a thyroidian with a goitre, measuring your neck is an essential observation (monthly)
Done regularly over a period of time, you can develop a ‘picture’ of what is usual for you or what is changing. It is the changes that are important; you need to make a special note of these. It is helpful to keep a ‘journal’ of all the changes in your symptoms and in your circumstances. Apart from having some more specific details to present to your doctor, you may make some connections between your symptoms and what is going on in your life at the time, e.g.. my heart has been thumping ever since I heard the in-laws are coming to stay!
When you are not feeling well, it is very easy to put everything that is wrong down to thyroid, so you do need to check out as much as you can that what you are experiencing is not from other causes (See Guidelines for Feeling Better)
2. The way these symptoms are affecting the quality of your life - this needs careful consideration. As a thyroid sufferer, whilst your illness was coming to light, you probably had to stop doing many things which were part of your daily life. Since the illness is being treated, you are probably seeing improvements and being able, once again, to do things you could not manage before. On the other hand, you may be more aware of what you still cannot do. These matters are likely to be affecting your “quality of life” and you need to report them to the doctor as clearly as you can. The following are a few examples of what you might want to say: “I cannot concentrate and remembering names is so difficult, it is causing me trouble at work”; “I feel so tired that I have to go to bed at 9 o’clock. My social life is non-existent”: “I have no interest in sex. This is damaging my relationship with my husband”.
Bear in mind that everyone, healthy or otherwise, experiences good and bad days. You cannot expect to recover from thyroid disease in a week, nor in a month! It takes a long time for your body to recover and if you have been ill for a long while, you will need longer to feel the full benefit from your medication.
3. Questions you wish the doctor to answer - make a list of questions, not just before your appointment, but as they occur to you. Review the list before you go to see your doctor and put the questions into some order, so that you can put them clearly and briefly. It might help to write down his answers. In fact, if you can, take somebody with you to your appointment. It can feel very supportive to have someone there who can not only recall or make a note of what the doctor says, but perhaps also confirm your findings and ask questions that you might omit.
Many thyroidians have been through a difficult time just getting a diagnosis. You can feel very despondent when you are on medication but still feel unwell; even more so when you are told that your blood test results are normal. If, after following the above-suggested procedures, the outcome is not as you would like, do not lose hope. You may just need to give the recovery situation more time.
You may be told that you are also suffering from another illness, perhaps psychological. Seeing a specialist in the relevant field can be helpful - any clarification of your condition is beneficial. (Psychiatrists are aware how easily the symptoms of thyroid disease can be confused with psychological illness. So the British Thyroid Foundation do recommend that if you are offered such a consultation, you do accept it.)
4. Blood test results - the doctor has these in your notes on various bits of paper. It is far easier for you and your doctor to discuss and compare them, if you write them all down on a single sheet of paper. If you do not have the details of your blood test results, it is probably simpler to go into the surgery and ask if you can write them all down. Under the Patients’ Charter, you are allowed access to information in your medical notes back to November 1991.
To build up a complete ‘portfolio’ of results, you need to make a note of the following:
- The date.
- The name of the blood test (TSH, FT4, TT4, T3 etc).
- The result in figures.
- The range figures (without which the result figures make no sense).
- The medication you were on at the time.
Each time you have a blood test, try and add your personal observations of your state of health at that time and any other relevant details of what was happening in your life
Presented this way, in the context of how you are feeling and what you are doing, blood tests can be more than just an indicator of whether your TSH and thyroxine levels are normal or abnormal. What you are hoping your blood test results will indicate is what is referred to as 'set-point'- where the normal balance of thyroid hormones produced by the pituitary and the thyroid coincides with you feeling most well. To reach your 'set-point 'can take time and some 'fine-tuning' of your medication (small increases or decreases, daily or weekly) a matter of trial and error that can make all the difference.
With regard to thyroxine replacement the Consensus statement for good practice etc (British Medical Journal, 31st August 1996) states, “The correct dose is that which restores the euthyroid state and relieves symptoms. In most patients these will be achieved by a dose of thyroxine resulting in a normal or slightly raised serum thyroxine concentration (i.e. T4), a normal serum triiodothyronine concentration (i.e. T3) and a normal or below normal serum thyroid stimulating hormone concentration (i.e. TSH).
You do need to be aware that, although the idea of finding a patient’s ‘set-point’ (by means of ‘fine-tuning’ thyroid medication) is advocated by leading endocrinologists (British Thyroid Foundation Medical advisers among them), not all doctors are familiar with this approach. Many still think of thyroid balance solely in terms of normal or abnormal thyroid hormone levels, as shown by blood test results. So you may find yourself having to explain - tactfully - why you would like a change in your medication to be considered.
If you are presently attending a hospital clinic, you may have seen a number of doctors. In this instance, you may want to see a particular doctor you know or the Registrar or the Consultant and it would be worthwhile asking the nurse in charge of the clinic, explaining, if necessary, your reasons and the importance of the appointment.
Eventually, all thyroidians expect to be looked after by their GP, so the sort of relationship you have is of great importance. If you do not have a good level of communication with your current GP, it is sensible to consider changing to another doctor in the practice or changing to another practice.
During this confusing period of recovery from thyroid disease, apart from taking your tablets regularly, you need to look after yourself, have patience, be hopeful and get some enjoyment out of life!
Copyright © 1997, Helena R. Green. |
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