Total thyroidectomy too low TSH normal T4

Hi I am Lottie, new here. Does anyone have any suggestions please. Total thyroidectomy 10 years ago, also have Rheumatoid Arthritis. Have been suffering will bad fatigue. My GP has decided as TSH 0.14 too low and T4 17 so ok, to reduce my Levothyroxine. 100mcg 3 days, 75mcg 4 days a week. This seems far too low. Can any one tell me what meds they are on without a thyroid please? Thank you.

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11 Replies

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  • My personal opinion is that if someone has no thyroid gland they should be on a combination dose, i.e. T4 and T3.

    Research by several researchers has shown that people feel better with a combination and I have a gland but cannot get better on levothyroxine. So take T3 only and am well now.

    They should stop mucking about adjusting hormones due to the TSH result. I assume he hasn't tested your Free T4 and Free T3 just to see how much T3 is circulating. I shall give you a link:-

    thyroiduk.org.uk/tuk/testin...

    If GP wont do them you can get private tests.

  • Thank you, yes think I will go back and request T3 test. Can't believe you have to push for them to check

  • Lottie3,

    I'm taking the equivalent of 150mcg Levothyroxine. My endo thinks I'm over replaced because my TSH is <0.01 and she would like it 0.05 but I've declined further dose reductions. It's really not relevant how much other people are taking but I agree that your GP's dosing is low. GP really shouldn't be dosing according to TSH. TSH 0.14 is below range but it isn't suppressed and unless FT4 17 is over range you were not over medicated and there was no need to reduce dose.

    The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

  • Thank you, you have just come confirmed what I already thought. Why oh why do we have to sort this out, surely that is what the doctors are paid to do.

  • They are so poorly trained in dealing with patients who have problems with their thyroid gland.

    One of our doctors who was trained in the 50's was always trying to get the Endocrinologists to take more notice of clinical symptoms (they know none) but Dr S knew them all as did all doctors since 1892 when the very first thyroid hormone replacement was developed.

    Dr Skinner was a Virologist but was brought into Thyroid by chance because about ten years after the blood tests and levothyroxine was introduced and untrue allegations being made about NDT being inconsistent, patients remained undiagnosed due to the TSH or weren't improving on levo

    He was sent patients who had mysterious symptoms but he knew that most were hypothyroid and prescribed. He tried his utmost to infom the Endocrinology they were wrong in how they were diagnosing/treating patients but they ignored him. So, we had new diseases, fibro, ME and CFS.

    So, today - the modern world - we have gone backwards in diagnosing/treating (usually too low a dose). The endocrinology stopped prescribing NDT - they fell for the promotion that levo was perfect - but didn't care so stopped NDT and now T3 which has left many in the lurch and desperate. This is an excerpt from one of our Advisers (deceased) who was also against the 'modern' method:

    Safely Getting Well with Thyroid Hormone

    ONE OF THE WORST DISASTERS in the history of medicine is the

    endocrinology specialty’s modern guidelines for diagnosing and

    treating patients whose bodies are under-regulated by thyroid

    hormone. These guidelines and the beliefs they’re based on have

    caused a worldwide public health crisis. It involves the chronic ill-

    ness of scores of millions of people and the premature deaths of

    incalculable numbers more. Each year, billions of dollars are spent

    for drugs intended to control patients’ chronic symptoms; the drugs

    are largely ineffective and often induce adverse effects in the

    patients. Researchers who fail to recognize that the cause of the

    patients’ symptoms is under-regulation by thyroid hormone do

    studies looking for other causes. Since they are blinded to the real

    culprit, their fruitless efforts squander billions of research dollars

    web.archive.org/web/2010112...

    web.archive.org/web/2010103...

  • Did you have your thyroid removed due to Graves? If so, it's common for the TSH level to stay suppressed no matter how little thyroxine is taken.

    That said, the TSH level is totally unreliable as an adequate treatment marker once thyroxine is taken. You can only really guess at overmedication if FT4 and FT3 are over-range (and even then, you may not be overmedicated).

    Your doctor is a little uneducated on the ways of the thyroidless. Sadly, more common than it should be. You don't have to accept the reduction in dose. Ask for FT4 and more importantly, FT3 to be tested first.

    Edited - I see FT4 has been tested, sorry. What was the lab range, do you know? It doesn't look like it was overrange, ergo, not overmedicated!

  • Thank you for replying. T4 was in range, 17, top of range 19. See they have bought down the top of the range from 22. I had a total thyroidectomy because they could not balance it and a large goitre, so no was under active, Hashimotos. Have moved, no confidence in the doctor.

  • You have a perfectly normal, probably an optimal, TSH and no change of dosage should be made purely because of that. In same condition and mine is 0.05 and is accepted as quite OK. NDT is the normal accepted correct treatment for having no thyroid, accepted by the patients, that is, not by the doctors!

    You are probably on the WRONG medication. Your doctor will undoubtedly tell you there is no alternative, but there are two. The simple fact is that he is normally prohibited from giving you either of them. Firstly there is combined T3/T4 which is becoming more and more difficult to get. Secondly there is Natural Desiccated Thyroid (NDT, porcine, sometimes used brand name Armour).

    If you simply don't fancy having arguments, perhaps be insulted and jump through endless hoops on a journey to nowhere, then give up now and try some for yourself - brand "Thyroid-S" is the one many take. If it doesn't suit, then no harm will have been done.

    I have taken both courses, have now been arguing for well over 3 years and have already got precisely nowhere!

  • Thank you will look into it. Are you in the UK and have you had the Armour on the NHS?

  • In NW England. Armour is the main brand of NDT that is prescribed in the UK, but other brands are sometimes prescribed. I believe the majority of prescriptions are private, not funded by the NHS, but some most definitely ARE so funded, but unable to find out how many.

    I was offered NDT (brand not mentioned) on private prescription but turned down the offer (long story!)

    Currently determined to get what I want, NDT on NHS prescription, but I am suffering from delay after delay, the latest until sometime after 13th June. I imagine something will blow up based on the reminder I have just sent, which promised a reply before the end of May. Extract for your amusement:

    " I expect an answer that gives a genuinely accurate answer to every point I made, an answer in accordance with TRUTH and the true meaning of the Hipocratic Oath, not in accordance with the proclamations and propaganda of the BTA and the Society for Endocrinology, both of which give me every impression of being under the direct financial control of the Pharmaceutical Companies, leaving TENS OF THOUSANDS of patients incorrectly treated and ill for the rest of their lives."

    Anything falling short of this language fails; if any further communication is required, it will be comprised of much stronger words than these.

    Have fun if you wish to try for an NHS prescription yourself but if you prefer a stress-free life then opt for the Thai brands, Thyroid-S or Thiroyd. They should give you a better life than you can ever get on levo alone.

  • Hi there I had the radioactive iodine also about 10yrs ago I am on 125 levothyroxine.

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