Since Thyroid Australia was formed in June 1999, we have had dealings with close to a thousand thyroid patients, many of them suffering from hypothyroidism. The most common concerns we hear from these people are:

• "My doctor tells me that I am running the risk of developing osteoporosis in later life because my TSH is below normal."
• "I have just had a thyroid function test, and my doctor tells me that my levels are normal, and yet I still feel rotten."
• "Can you give me the name of a thyroid sympathetic doctor who will listen to how I'm feeling, instead of just looking at my thyroid function test results?"
• "My doctor tells me that I should lose weight. I try very hard to eat properly, and to exercise, and yet I cannot lose weight."

"My doctor tells me that I am running the risk of developing osteoporosis in later life because my TSH is below normal."

When I was diagnosed with hypothyroidism my TSH was not that high and, except for a blip when my thyroxine dose was cut, has consistently been below the reference range. Too often have I heard that my TSH was too low and that I was running the risk of developing osteoporosis, but fortunately my endocrinologist told me that this low TSH was okay.

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"I have just had a thyroid function test, and my doctor tells me that my levels are normal, and yet I still feel rotten."

In the six years since I was diagnosed, I have also been told that my thyroid hormone levels were "normal". I have, however, made a point of getting photocopies of my thyroid function test results from the very beginning, as I wanted to understand what was going on with my own body, and to relate my test results to how I was feeling. (I am including with this article graphs showing my levels of free T₄ and TSH since diagnosis.)

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Since I was diagnosed I have made it my business to read everything I could find about thyroid function and problems - trying to find out what I should be doing to make myself feel better - to control my condition instead of having it controlling me. For instance, in 1995 the British Thyroid Foundation published a series of articles, entitled How thyroid patients see us, by the eminent endocrinologist, Sir Richard Bayliss. These articles were based on a talk Sir Richard gave to a Thyroid Club meeting at the Medical Society of London. I love this article, and we have sent out many copies to those hypothyroid patients who have contacted us, desperately looking for some hope. In these articles, which I feel should be required reading for all doctors, Sir Richard made one particular statement which struck a chord. He said:

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This corroborated what I had found myself. Then I read another article, entitled Hypothyroidism and its treatment, written by Dr A D Toft, also for the British Thyroid Foundation. He confirmed what Sir Richard Bayliss had had to say, writing that:

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I had also often wondered, when listening to many of those who have been treated for hyperthyroidism and are now hypothyroid, and who say that they really struggle with the symptoms of hypothyroidism, whether they could be suffering a form of "withdrawal" after their bodies had been more accustomed to a surfeit of free T₄ and free T₃ for so long. This time the TED Association came to the rescue. Dr M G Prentice, writing an article entitled Thyroid eye disease and its symptoms - an endocrinologist's view, said:

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I wonder, however, whether these former hyperthyroid patients might also not feel better if their free T₄ levels were maintained near the upper range of normal as Sir Richard Bayliss and Dr Toft have suggested.

"Can you give me the name of a thyroid sympathetic doctor who will listen to how I'm feeling, instead of just looking at my thyroid function test results?"

At Thyroid Australia, we do not recommend particular doctors. This is because one of the major reasons why people like a particular doctor is because they personally get on with that doctor. We have found some of our clients praising a particular doctor, while others have a strong antipathy towards that same doctor. We do however suggest to people that if they are not happy with a particular doctor they should look for another. We suggest to people who are unhappy with their GP that they should try to get a referral to see an endocrinologist, or go to another GP. Then again we also get clients who say that they have approached their GP for a referral to an endocrinologist, only to be refused. In my case, I found I needed to see an endocrinologist to get my thyroxine dose to the required level, as the GP I was then seeing kept it too low for my own well-being.

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So, I beg of doctors, please LISTEN and take note of all your patients' symptoms, and don't just rely on the test results being somewhere in the reference range. The patients also need to be symptom free. And I beg of thyroid patients, do TELL your doctors about your symptoms - doctors cannot listen if they are not told what's going on.

"My doctor tells me that I should lose weight. I try very hard to eat properly, and to exercise, and yet I cannot lose weight."

And then we come to the issue about weight. Something I can relate to quite well. I have a couple of theories as to why hypothyroid patients struggle to lose weight, some of which relate to the length of time it took to be diagnosed. I know in my case it was nearly a decade before I was diagnosed, and in that time I often turned to high energy foods to get that extra energy which I lacked. I also struggled to get motivated to exercise properly. My muscles ached so much that it really was not comfortable. I don't know what it's like for other hypothyroid patients, but I suspect that this might be a common problem - and these bad habits are difficult to break, especially when your thyroid hormone levels are not in the right range for your own body. I also know that I managed to lose weight quite easily when my free T₄ levels were in the upper part of the range. It was then that I managed to control my desire for sweet and fatty foods (high energy foods) and when I managed to set up and stick to a decent exercise programme. I therefore think that any hypothyroid patient will have a continual battle if they try to lose weight when their free T₄ and free T₃ levels are towards the lower end of the range - metabolising food properly and having enough energy to lose weight just doesn't happen when you still have hypothyroid symptoms. I am hoping that now that my thyroxine dose has been increased I will again find it easier to lose weight.

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Post Script

After the publication of this article, Sigma Pharmaceuticals interviewed Professor Jim Stockigt of Monash University and the Alfred and Epworth Hospitals in Melbourne. Many of the issues raised in this article were discussed by Professor Stockigt. The full text of the interview can be read here.

References:

1. W A Thomasson, PhD "Thyroid supplementation does not increase osteoporosis risk", Doctor's Guide http://www.pslgroup.com/dg/1D62E2.htm, Accessed 24 July 2000.
2. Prof A P Weetman, "Fortnightly review: Hypothyroidism: screening and subclinical disease", British Medical Journal, 1997;314:1175 (19 April), http://www.bmj.com/cgi/content/full/314/7088/1175, Accessed 27 November 1998.
3. Sir Richard Bayliss, "How thyroid patients see us", British Thyroid Foundation, BTF News, Nos. 13-15, Summer 1995 - Winter 1995.
4. Dr A D Toft, "Hypothyroidism and its treatment", British Thyroid Foundation, BTF News, No. 23, Winter 1997.
5. 5. M G Prentice, "Thyroid eye disease and its symptoms - an endocrinologist's view", TED Association, TED Newsletter, No. 22, August 1994.
6. American Association of Clinical Endocrinologists, Thyroid Awareness Month:2001, January 2001 http://www.aace.com/pub/spec/tam2001/presstam2001.html , Accessed January 2001.
7. Dr Allan St J Dixon, "Osteoporosis in relation to diseases of the thyroid", British Thyroid Foundation, BTF News, No. 3, Winter 1993.

Megan Stevens is
President of Thyroid Australia and suffers from Hashimoto's Thyroiditis 

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