Doctors say they don't know whats the matter with me!!

Hi all, I went to the Gp back in Dec 2011 at his request for an "MOT" - I was a fit, active 61 year old male and felt fantastic! But my TSH level came back as 7.5. I was called in and it was suggested I have radioactive iodine treatment. This was done in 2012 and I have been feeling awful ever since! I went back to endo and after another two years had half of my thyroid removed. I have had numerous bloods done but all come back within "normal" range so have not been given any thyroxine despite having almost every symptom except TSH level. I have been back to a consultant endo yesterday and have been told that whatever is wrong with me is not my thyroid! I am taking tramadol for pain and have been told to go on antidepressants. I can be fine for a few days and then in bed for a few. I need to go to bed before 8 or I cannot function the next day. Suggestions please!!!!!!!!

10 Replies

  • I am not an expert but a TSH of 7.5 would suggest an underactive thyroid or did you mean it was 07.5? Iam sure RAI would only be given for an overactive thyroid but maybe someone on here will confirm this.

  • Yes a little odd you had RAI and surgery for an underactive thyroid, did you have a goitre, nodules or some other reason the treatments were done ?

  • I did have a goitre but this was never mentioned until I complained of its size 2 years ago which is when they suggested removing half

  • Hi Yve12rye, read the following, it might help you going forward!!

  • You could possibly have Adrenal Fatigue? Has the Endochronologist tested your antibodies or just your TSH?

  • Whoa! Hold on there..... You followed the doctors instructions and went along with being nuked, to then feel awful and have them shrug their shoulders? Nooooo...... I hope you no longer follow their instructions to the letter.

    What you need is a full set of thyroud hormone tests, so you have a starting point and can see where you are..... You were 'treated' for hyperthyroidism, but your symptoms say hypothyroidism..... All this smacks of hashimotos or there is another cause, where the tsh never fits in.... Here's the link.....

    Your doctor is likely to be fairly unhelpful, so a full set of tests is going to set you back about £100. Details of testing on the homepage.

    start watching out for your own health, you are the one with your best interests at heart......

    When you have a full set of test results, put them on here, we will all pitch in...


    Edited .... This link should work ok.....

  • Yve12rye,

    Normal is a very broad range. Can you post your recent thyroid results with the ref ranges (figures in brackets after the result) to help members advise.

  • It looks like the doctors have made terrible mistakes in your treatment.

    They seem to have relied exclusively the fact that you had a goitre and on a TSH test when deciding on the treatment - they should have done the full range of thyroid tests. They should also have taken account of your symptoms (or lack of hyperthyroid symptoms).

    The is another condition which can cause goitre and unusual TSH and other thyroid values. - Impaired Sensitivity to Thyroid Hormone (more often known as Thyroid Hormone Resistance). It is genetic and requires very high T3 levels in the body to overcome the resistance. A goitre can be caused by the thyroid working so hard to produce hormones.

    If there are other family members with fibromyalgia, CFS, ME, Coeliac Disease, MS, Heart Disease, thyroid or depression this would further support this.

  • Sandy do gp's / endos actually recognise this condition?

  • Impaired Sensitivity to Thyroid Hormone (ISTH) is a term which describes a number of genetic defects which interfere with the working of thyroid hormones and cause symptoms similar to hypothyroidism. It is a recognised medical condition although many doctors have not heard of it. Some doctors may however be aware of it under another name such as Thyroid Hormone Resistance or Resistance to Thyroid Hormone. Those doctors who are aware of the condition view it as extremely rare (1 in 50,000) and associated with severe disability. It is therefore not something to consider as a possibility when they see a patient with hypothyroid symptoms but normal thyroid blood tests.

    I will send a personal message with some more info.

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