Please can someone advise me? I’ve been here before and I’m scared to go back to my doctor because I’m reliving the same rodeo I took back in 2019 when my private endo told me to stop taking Levo. I now cannot go private through my healthcare as all they will pay for is to completely remove my thyroid, I do not have a goiter and have had an ultrasound which showed a small but perfectly normal thyroid.
I can’t sleep, I can hear and feel my heartbeat throughout my entire body all the time but especially at night when everything else is quiet, I sleep with a fan on to try to drown it out but it’s not working. My tongue is so swollen that it is pushing my teeth out of alignment and I can no longer bite anything cleanly, there’s a gap. I have gained 2 stone and am pushing through size 14 jeans when my weight has been stable (size 10-12) for years. My hair is shedding so much I can see my scalp. My eyesight is becoming blurry and I can barely thread a needle (not good for a seamstress!).
History of results (TSH range 0.35 - 4.94) attached. But more details available.
I strictly follow the Levo taking guidelines and I also take the following, at least 2 hours after Levo:
Live friendly bacteria: 3 billion
Vitamin D3: 100mcg
Vitamin C: 500 mg
Vitamin B Complex
Vitamin K2: 50mcg
I am completely gluten free and have been for over a decade.
Before a blood test I stop taking all of the above for 10 days prior to the test and do not take Levo on the day of the test until after the test. (Always have blood test before 10am).
I have had my FT3 tested but not for the last few tests also FT4 but have always come back within range according to the lab, even when my TSH was 82.
Unknown to me, on the last tests taken I had Covid, I don’t know if this is relevant but I thought it best to mention. I tested positive a few days after the blood draw.
I can provide other test results if anyone wants to see them including Iron, vitamins and blood sugars etc.
I am one of “the lucky ones” in that I do not have any symptoms when I am not medicated. When my TSH was 82.02 I had ZERO symptoms. I only get side effects from Levo and no other effects, good or bad when not medicated.
I was taking Mercury Pharma 25mcg from August 2023 and then upped to 50mcg in April 2024 at NHS endo advice. At my 25mcg level I had side effects but was coping with them and all seemed fine. I have now been given accord 50mcg and told to split one to get to 75mcg by NHS endo via a letter, no consultation. I am trying to slowly work my way up there but splitting a tablet into 4 is fiddly work. I cannot take TEVA as that really doesn’t agree with me.
Since upping to 50mcg the side effects are becoming unbearable and I just broke down in front of my MIL who suggested it may be peri-M. I feel that if I go to the doctors right now they’re going to try to put me on anti-depressants or tell me it’s not the Levo. I had been on 50mcg for approx 10 weeks before the latest results.
I’ve looked through the filler differences between Merc Pharma and Accord in case that could be it but can’t see anything jumping out that could be obvious.
Anyone got any ideas before I call the doctors on Tuesday and beg for a face to face appointment? Do I call the endo (who told me that T3 converts to T4) and hope to get a different one? I am feeling so ill and so worn out due to lack of sleep and weight gain that I just want to sit and cry if this is what the rest of my life is going to be like. Sorry if that’s a bit dramatic, I’m really not the dramatic type!
Thank you in advance for any advice, I really do appreciate it.
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Hypo73
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All those symptoms are hypo ones. You are still very under medicated I would think.It's unlikely that 75mcg will be enough and your TSH is very high still. Have you had any T4 or T3 tested? You can get this done fairly cheaply via a finger prick at home test (if your GP won't or can't do do it)
I too felt okay on 25 then crap on 50 and 75. Just hoping I feel some relief once my TSH gets below 2.
With your TSH out of range surely the GP will increase you to 100? That's what I'd be pushing for.
Yes I totally understand. Like Helvella says it is worth trying some other brands tooI'm surprised they started you on 25mcg when your TSH was so high but I suppose you weren't having any symptoms. Have you had antibodies tested? Do you know if you have Hashimotos?
My TPO Ab was somewhere in the region of 890. I don’t have a goiter though so officially Ords but lumped in with Hashis. Confirmed.
They started me on 25mcg due to the issues I had previously in 2019 where I ended up under cardio care due to the side effects. When I stopped Levo my heart went back to normal, no palps but now have ectopic beats every so often, confirmed with 24 hour heart halter in July 2023.
just to point point out an error in the above result table, 11may23 the lab ranges were different , (meaning your fT4 was ok at that point, about 50% , not below range ) :
from a previous post : T4 7.7 (4-11) FT3 3.3 (2-4)
There are several other makes of levothyroxine. Including three makes that now produce 75 microgram tablets. (Including Teva which you, along with many others, cannot tolerate. And Aristo - which should be available any day now!)
Personally, I like Aristo.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), etc. PLUS how to write prescriptions in Appendix F.
It is awful getting up to a full replacement dose as being under replaced can actually makes you more hypo as your thyroid is even less inclined to function as it is receiving an even weaker signal to produce more hormone and it really wasn't getting the message or able to produce more when your TSH was 80+
You possibly didn't have symptoms before as your body was desperately making enough of the active T3 hormone to keep you functioning along with your adrenals picking up the slack
Perhaps I've missed something but I don't understand this bit...
I have now been given accord 50mcg and told to split one to get to 75mcg by NHS endo via a letter, no consultation. I am trying to slowly work my way up there but splitting a tablet into 4 is fiddly work.
Why are you trying to split a 50mcg into 4 if you are aiming for 75mcg?
Only because the endo has asked me to do this slowly, over 10 weeks as my body seems to fight any increases and the doctors are behind on the memo so are only prescribing 50mcg at the moment.
Do you have an opinion as to if it may be my adrenals making my heart go funky with each increase? I don’t know an awful lot about these and never had any tests.
Often people that struggle to get up to a decent dose have low or high cortisol levels, cortisol is needed to get the hormone into the cells where it actually makes a difference.
Have you ever had a cortisol blood test? (It's hard to guess if yours might be high or low as symptoms are very similar) This would show your total cortisol but we find 4 point saliva tests far more useful as they give us 'free' levels
If you have been hypo for a long time adrenals are usually quite fatigued and as you are still under replaced they are having to work hard to make up the short fall which often means a boost of adrenalin
No symptoms when not medicated? Was your condition found by accident? A routine blood test? Sometimes if you have private insurance they include thyroid as a part of a ‘package’.
Otherwise if you reported no symptoms, how did they have a clue?
I know how unusual it is, unknown to me my doctor was putting the tests on back in around 2015. Back then I never even thought to ask for my results as I didn’t even know they were being monitored. She tracked it over a year and a half and then called me out of the blue to tell me I was hypo. I had no idea what she was even talking about. It took until 2023 to get my antibodies done, even the private endo told me she wouldn’t test for them.
I never had any symptoms, always had tonnes of energy and no issues with weight (after I figured out the gluten issue!) had thick hair and never any worry about my health.
I agree with you that it’s a really unusual case in that my doctor at the time (since retired) was really forward thinking.
Not just forward thinking but also acting ‘responsibly by at least monitoring’. Crikey I was ‘subclinical’ back in 2001 but I was never informed. Even when testing in 2017 showed ‘full blown’ hypothyroidism (with extremely long term symptoms I should add) and never informed for another three years.
Still it’s horrible you now having symptoms only whilst on the medication. Curiouser and curiouser.
Pituitary/hypothalamus issue even? PaulRobinson talks about this a bit in his books. He puts stuff on his blog if you don’t want to buy his books.
My tongue is so swollen that it is pushing my teeth out of alignment
For many people this is a sign of low B vitamins, particularly Vitamin B12 or vitamin B6. For the body to make use of its supply of B12 it also needs good levels of folate.
The best kinds of B vitamins are the Active ones which are more easily absorbed than the inactive ones which must be converted to another form to make them active. Many people struggle to do the conversion of inactive to active B vitamins, so taking the active version is far better than taking the inactive ones.
A list of active and inactive B vitamins can be seen on this link :
I would suggest getting a good quality B Complex e.g. Igennus Super B Complex or Thorne Basic B, and in addition I would suggest taking an extra B12 supplement. If your folate level is low take an extra folate supplement too.
The best form of B12 to take is methylcobalamin at a dose of 1000mcg per day. Avoid cyanocobalamin completely.
The best form of folate to take is methylfolate at a dose of 1000mcg per day. Avoid folic acid completely.
Although B12 is safe even at high doses and high levels I'm not sure that is true for folate. I tend to try and get my own level of folate up to about 20 micrograms/L and keep it there (although I find it drops quickly if I stop supplementing).
Vitamin B6 deficiency also has unpleasant effects on the tongue. But unlike B12, B6 can be overdosed, and this should be avoided. Its complicated though. B6 deficiency can lead to peripheral neuropathy and so can B6 toxicity, so working out whether you are suffering from too little or too much B6 can be difficult. I think some people have had their levels tested, but I never have - it isn't a test mentioned very often. Medichecks offers the test, but its expensive for a single test - currently £119 without any discounts. Also it requires a venous blood draw which adds even more to the price. Finger-prick testing isn't offered.
One possible cause of hair loss in people with thyroid disease is low iron and/or low ferritin (iron stores).
It is possible to have low iron and low ferritin. One of iron and/or ferritin could be "normal" while the other is low, normal or high. One of iron and/or ferritin could be high while the other is low, normal, or high. It is best to have an iron panel done before supplementing iron.
There are some people who have "normal" or high ferritin and low iron. There are some who have high iron and low ferritin. These different combinations all indicate different things going on with your health. If ferritin is low and iron is high, taking iron might leave ferritin low and cause iron to get higher and higher which is not desirable. If ferritin is high and iron is low, taking iron could raise ferritin higher and higher while leaving iron low.
Note the paragraph giving optimal levels for ferritin :
Normal ferritin levels for women are between 20 and 200 ng/mL. According to some experts, ferritin levels of at least 40 ng/ml are required to stop hair loss, while levels of at least 70 ng/ml are needed for hair regrowth. The optimal ferritin level for thyroid function is between 90-110 ng/ml.
If you get an iron panel tested post the results and reference ranges in a new thread and ask for feedback. We can also suggest good iron supplements. Not all iron supplements are equal - many are poorly tolerated or poorly absorbed.
Crikey , you re really going though the mill here aren't you hypo73 . not sure what to say that is any help .
just reading all your previous posts/ replies again ... TSH was so high yet you felt fine , but develop classic hypo symptoms on levo, that get worse with increasing dose ... last time round you did get up to 125mcg , so increasing your dose this time round seems likely to have same effect , ie higher dose giving worsening symptoms .
This time round .....(when you started levo again with TSH 82) :
Did you feel completely fine before taking levo ?
ie only agreed to take levo again because of scary TSH , and positive TPOab (400 ish) ?
... and apart from the high TSH , Did you have any clinical signs of hypo at all ? eg high cholesterol ?
TSH 82 (.35-5)
fT4 7.7 (4-11) 52.86%
fT3 3.3 (2-4) 65.00%....... thyroid was clearly managing to make enough FT4 / and FT3 to keep you well , so you were not in any imminent danger of death from hypothyroidism , despite what your TSH seems to think about it
Endo ruled out 'assay interference' with the TSH by testing at different lab.
you are in a very tricky position, butif TSH (and TPOab) and small thyroid size is the ONLY reason you are taking it ,and if you felt very well without it , then honestly if i felt as bad as you do now , i would be tempted to stop taking it again and see if my symptoms improve ....... but if you did come off levo again it would be important to keep a very regular eye on your fT4 / fT3 levels and restart levo ( or possibly T3 ? or NDT? ) if they do fall below range.....
i'm ONLY saying that because your fT4 and fT3 don't ever seem to have gone below range .... so basically i think your TSH is lying ...i don't know how , but i still think it is .
i'm vaguely wondering if perhaps your TSH has very low bioactivity ? (which hopefully jimh111 / or helvella may be able to explain better than me)
as you have small thyroid , and a very high TSH , i do think it is worth asking an endo to test your TRab ( the blocking form of TRab are known cause of
I had same issue although my tongue already scalloped as sign of thyroid issue.From an hour of taking my first thyroxine tablet it swelled up. With every brand I tried, some worse than others. I initially did very well on thyroxine and felt well again but then it started to feel like I was taking poison. Endo wanting up dose but me wanting lower.
Eventually due to feeling so poorly on it, conversion issues and tounge issue getting serious I was prescribed T3. Had issues with that to start with. 11 years down the line on t3 only but still have issue with tounge swelling.
Had b12 ruled out.
Could be fillers and binders in the tablet, liquid thyroxine will rule that out.
Could be that your still very undermedicated and need to increase
A few things from your case history and current experience make me wonder if maybe you might have Atrophic Autoimmune Thyroiditis AAT), and that's causing your treatment problems: you've had very high TSH without goitre; you've got a small thyroid (how small, see below?); and you're not doing well at all on T4 monotherapy.
I'm not remotely scientific, but I did read AAT can be responsible for difficult swings during treatment, and really mess up dosing.
There'll be other people here who know way more than me, but perhaps worth looking into, especially as one of your earlier doctors was looking for "biological interference" from your own body regarding the action of the TSH - perhaps she meant you might have TBAb antibodies.
I agree with tattybogle , for what it is worth. My personal opinion is not in any shape or form , expert. As Tattybogle suspects, I too think your TSH has very low bioactivity. I think if you did the Blue Horizon Thyroid Genetic Susceptibility Test, like many of us have, you will be AA for TSHR and GG for TRHR, or normal in one of these, bad in the other. I suspect your TRAB antibodies are such that the stimulating ones are keeping your FT4 and FT3 in range , balanced by blocking . Supposedly there are neutral TRAB as well. Is it a case that "neutral" TRABs are controlling FT4 and FT3 and keeping them in range? I think the explanation will be a genetic mutation of some sort.
If you have no symptoms when not on thyroid medication, I personally would be tempted to not take thyroid hormones of any kind, and do as Tattybogle suggests, in that you monitor your levels regularly to make sure FT4 and FT3 remain in range. I think your TSH should be ignored, as in Central Hypothyroidism, and FT4 and FT3 monitored to ensure they remain in range.
Edited again: You have B vitamin deficiencies now , as you have changed your FT4 and FT3 levels away from your personal sweet spot, by taking supplemented thyroid hormones when your body is used to being able to maintain homeostasis when TSH was extremely over-range, without supplemented thyroid hormones. KRISHNAMURTHY etal, 2021 says that thyroid function is determined by the amount Vit B2 and Vit B12, as these appear to affect feed-back on the thyroid.
To have biologically active Vit B12, T4 and T3 thyroid is part of the mix to achieve this. Changing your levels of T4 and T3, away from your sweet spot, has affected your Vit . Bs.
3rd Edit: The active B12 blood test cannot measure whether B12 is biologically active or not. See Pernicious Anaemia site, Australia.
You say that your teeth are out of alignment , and are you saying you now have a gap in your teeth?
Gaps appearing in your teeth could be pituitary failure where you have not yet reached the stage of having central hypothyroidism. Pituitary failure always presents firstly with problems with growth hormone. This can cause acromegaly. Have your feet or fingers lengthened, for example? The teeth can develop gaps between them.
The 2nd stage of pituitary failure affects gonadotrophins.
The 3rd stage affects thyroid. Your TSH has been in the 80s but FT4 and FT3 , so far in range. The 4th stage affects the adrenals.
There is a You Tube Video from The Pituitary Foundation presented by an Oxford Professor of Endocrinology many members consult which lists the order pituitary failure takes. I believe that I have it. As an adult , my feet have gone from a size 6 to 9 , with the last increase being an 8- 9 in 2019. My thyroid readings are most definately Central Hypothyroidism. I fell ill in 1987.
I think I can name the Professor on the site, but to be on the safe side, I haven't. If you want it to see him privately, in person, or by Zoom, I can private message you.
Edit: You need an MRI scan of your pituitary. I need one but my health board is not playing ball. You need an IGF1 blood test for acromegaly. Mine was negative. They tell you this is conclusive for acromegaly. It is not . You need an Oral glucose tolerance test. That would be conclusive. I have also been refused an OGTT.
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