Battle to get hypothyroidism investigated

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Sorry I put this on a reply to someone's post but thought I'd get better response if I start a new thread.

Hi All

I have been battling for over 10 years to get my GPs to investigate my thyroid profile. They still insist on doing TSH on its own which has come up time and time towards the upper limit between 3.67-4.67. I have blood tests at least twice a year and both my ferritin and vitD are always significantly below the lowest levels. Over the years I have been on anti depressants and worked extremely hard to wean myself off them. I have put on over 20kg in this time even though I eat healthily- I do not tolerate fatty foods, do not snack between meals and eat mainly salads and grills. My portions are quite small and I get full quickly. The weight has now caused the arch of my foot to collapse.This followed a bunion op,my weight did not allow the foot to recover well.I am a secondary teacher and now struggle to get through the day. I was hoping to work beyond 60 but now I am doubting if I can even get to the magic 60. I am thinking of going part time which will hit my pension very hard.

yesterday I had my TSH and T4 done together and both are in the Lowe limits 1.27TSH 12free T4. If I take this to my GP he will do nothing because they are within the guidelines set. I have asked for referral to an endocrinologist but was refused. I asked if he could recommend a private one. He said I will only be wasting my money and I should try to eat less and walk more. When I pointed out that the pain in my foot limits me, he said just take paracetamol and walk.

What shall I do now?

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4 Replies

  • Posted

    Get a second opinion. But equally I wouldn't be in a rush to start thryoid medication as it can often make symptoms worse. With regards to diet,going gluten free may help your thyroid and I have heard iodine supplements can sometimes help support natural thyroid function.

    I was put on meds when I was borderline and I have had years of hell and worsening symptoms and now they are trying to take me off them. I would only start medication if a specialist says it's necessary because it can often make symptoms worse. I would go see a private endo and see what they suggest for people who have Tsh at the higher end of normal and T4 at the lower end. I wouldnt say it's a waste of money because at least it will put your mind at rest

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  • Posted

    Hi samia, with your TSH = 1.27, from a blood test point of view, this perfect - doctors aim to get it between 1-2. TSH (thyroid stimulating hormone) is high in people with hypothyroidism. TSH is produced by the pituitary gland and its function is to ask the thyroid to produce more thyroid hormones. So from the TSH result it looks like you don't have a problem. However there are more steps in the process. The next step is converting T4 to T3, and the following step is your body's tissues being able to absorb the thyroid hormones. To do these next steps properly your Ferritin level needs to be 70+. To find out if you are converting T4 to T3 properly you need a blood test that measures both T4 and T3. These cam be obtained privately. See tpauk for details. In the meantime it would be worth getting Ferritin tested, and your GP might do this (look up the symptoms of anaemia and tell your GP which ones you have, as GPs need justification for running tests). If you can get vitamin B12 and vitamin D tested too, it would be a good idea, as people are often low in these. If you are having no luck with this GP, try another one at the same surgery as they have different views.
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    • Posted

      One thing further, are yiu aware that TSH varies throughout the day? Ask for printouts of your blood test results and look to see which one had the highest TSH and what time it was taken and go for your next test at that time. However that test may be 6 months away so... has your GP ever tested you for thyroid antibodies? There are two tests and you need to have both of them. If you are positive in one and not the other, or both, it means you are developing hypothyroidism. The tests are: TGab and TPOA. In the meantime you can help your thyroid by going gluten free and soy free. Iodine supplements may help, but too much iodine can be toxic so like with everything, you are looking for a balance.
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  • Posted

    You might try finding another GP.  I've had to go to several doctors to find one that really listens to me and is helpful.
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