Hi everyone I'm new - diagnosed hypothyroid 5 years ago. Never felt well on dose. Endo said my symptoms should ease on increase of 150mcg levothyroxine from 125mcg, they didn't so endo suggested I stop it and this was over 3 years ago.
Thanks in advance for what I need to do next.
Written by
Laura2008
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These results show you have autoimmune hypothyroidism. You should resume thyroid hormone treatment as you will be at risk of cardiovascular damage in the long term. Do you have any results from when you were on levothyroxine? These might help explain why you didn't feel well on it. Your 'endo' should not have left you off thyroid medication with these numbers.
You needed T3 added to your Levo. You were not converting T4 to T3 so you had a high in range FT4 and a low in range FT3 and it was the low FT3 that caused you to have continuing symptoms. If you'd had T3 added there might have been some improvement.
But of course, with Hashi's you probably had low nutrients too, so your thyroid meds wouldn't be working properly anyway.
To be clear, the results in the post are current ones and you're taking nothing at all for the hypothyroidism?
TSH *108.5 (0.27 - 4.20) TSH is up and away beyond the top of the reference range.
Free T4 *9.4 (12 - 22) FT4 is lower than the reference range
Free T3 *2.6 (3.1 - 6.8) FT3 is lower than the reference range
TPO antibodies *704.5 (<34)
TG antibodies *>1500 (<115)
The raised antibodies are associated with Hashimoto's Disease (aka, auto-immune hypothyroidism) - the commonest root of hypothyroidism. Your body is producing antibodies are that are attacking your thyroid gland and with different degrees of speed for different people, your thyroid gland will fail over time.
Meanwhile, because the FT4 is falling, your pituitary ramps up production of TSH to stimulate the thyroid to put out more hormones. Your FT4 level is below the usual range and so is your FT3 - this is common in untreated hypothyroidism.
You need thyroid hormones to provide the hormones so that the TSH production can move down to more sensible levels.
Do you have an appointment with a GP or someone to discuss these results?
Hashimoto's is a fellow-traveller with poor gut absorption and this affects your vitamin and mineral levels.
The experience of members here is that there needs to be a watchful eye on the levels of thyroid hormones and vitamin and mineral levels because there's a difference between something being within a reference range and being in a part of the range that is optimal for Hashi patients to make effective use of thyroid hormones (whether our own or supplemented/prescribed ones).
If you have the results of your recent vitamin and mineral levels like iron, ferritin, folate, vitamins B12 and D) please post them, along with their reference ranges, as it will help members to comment.
If you don't have the results, please obtain a copy by contacting your GP's reception, and then post them, with details of your anything that you're taking, along with their dosages and for how long you have been using it. etc. and that might allow members to make helpful observations or suggestions.
If you don't have any vitamin or mineral test results because you've never had them, please request them when you talk to your GP or whomever you see to discuss these results.
Endo said my symptoms should ease on increase of 150mcg levothyroxine from 125mcg, they didn't so endo suggested I stop it and this was over 3 years ago.
And here we have the winner.............
drum roll please ................
Dickhead Endo of the year
And the prize this Endo has won..............
To be immediately struck down overnight with Hashi's/Hypothyroidism and have the above results. Then be denied any treatment for....... mmmmmmm ...... let's say 5 years and see how he/she likes it.
FGS, this must be the absolute worst we have read.
Laura2008 You must feel like cr@p. Stick around, you will get help here.
SeasideSusie - I have come to the conclusion since the last few days that all Endocrinologists need to have their own thyroid hormones tested as their brains obviously aren't working but in the meantime are ruining peoples health.
Oooooooooooo I see you are in fighting mode SeasideSusie and, really, no wonder. It would be justice if someone has developed worse/additional problems if they could go to a 'no win - no fee' medical lawyer for medical negligence as that is what it is. Negligence of a highest degree. Three years of no thyroid hormones whatsoever. The GP also didn't query??????
Information about Hashi's, which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Most doctors attach little importance to antibodies and don't have a clue how Hashi's affects the patient.
As ITYFIALMCTT has said, gut/absorption problems go hand in hand with Hashi's and poor nutrient levels are the result. If nutrients aren't optimal then thyroid hormone can't work. So if you post results for
Since you've taken no Levo for 3 years, unfortunately you would need to go back to the beginning and start at 50mcg per day for 6 weeks, then re-test then increase to 75mcg Levo per day for 6 weeks, then re-test, and keep doing this until your symptoms are gone and your blood test results are acceptable.
While this is happening you need to start going gluten-free to help reduce antibodies. Note that going gluten-free can be a bit of a shock to the system and having a week or two feeling as if you have flu is common, but it wears off. Being bad-tempered can be another side-effect, but that wears off too.
And also, you need to find out how bad your nutrient levels are and start supplementing any that are less that optimal.
It is going to be a long road back to good health, but you can definitely feel better than I imagine you do at the moment. I'm surprised that you can even communicate after 3 years of being severely hypothyroid with no treatment.
Your levels when on 150 mcg levothyroxine were OK. I would resume on 100 mcg for now and assess it in about a month. What were the symptoms that did not resolve when you went from 125 to 150 mcg?
These are signs and symptoms of hypothyroidism even though you had reasonable levels of hormone. Going on to higher doses of levothyroxine wouldn't work as the body then starts to produce high levels of 'reverse T3' which inhibits the action of T3. I would suggest your doctor puts you on 100 mcg levothyroxine plus 20 mcg liothyroine (L-T3) split across two daily doses. It will probably be difficult to persuade your doctor to prescribe this but I think you need something like this.
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