I went for my annual thyroid blood test and was contacted by my GP who said my result was "borderline", TSH = 0.11 and I could reduce my dose of levothyroxine to 75mcg (from 100) but could remain on current dose if I was happy to do so.
I have been feeling dreadful for a few months and don't know if it's a thyroid problem or something else. I have brain fog, bad short term memory, dizziness, feel disorientated, tearful, intolerant to noise eg barking dogs, loud voices, anxious, feel "unreal", an annoying cough (not covid related) and have been choking on liquids.
I was diagnosed by a neurologist with cerebellar ataxia which causes me to overbalance and I've had several falls, my poor knees can't take much more!
I will ask the surgery for a full printout of my results, apart from that I don't know where to turn, there seems to be so much going on and I can't think straight, I feel so overwhelmed.
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Janice717
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Janice a full check of your thyroid would be testing TSH, ft4 and FT3. FT4 and FT3 are the thyroid hormones in your blood available for the body to use. From your symptoms it sounds as if these levels are actually too low for you and that you really need an increase in levo not a decrease.
Doctors are not generally very good on thyroid issues so don't think that they are necessarily right. Question the reasoning for a decrease and take issue with it explaining to symptoms if the doctor is only going by TSH level alone.
Do you always get same brand levothyroxine at each prescription
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Have you had thyroid antibodies tested in past, or at diagnosis
How long have you been on levothyroxine
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
What vitamin supplements are you currently taking
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)
Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Do you normally take levothyroxine waking or bedtime?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.
Gluten intolerance is often a hidden issue too.
Request coeliac blood test BEFORE considering trial on strictly gluten free diet
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but a further 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal
Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
A persistent cough can be linked to dairy intolerance
Gluten intolerance and dairy intolerance often go together
Sometimes dairy intolerance improves after a year or so on gluten free diet
Thank you for your reply and suggestions. I now have my thyroid test results:TSH = 0.11 (reference range 0.38-5.33mu/l)
Free T3 = 7 (reference range 4.00-6,60pmol/L
Free T4 = 12.7 (reference range 7.9-20.0pmol/l
I have been on levothyroxine since diagnosis in 2003, I don't take much notice of the brand, I'm currently on 100 mcg Aristo which I take in the morning, before breakfast, but before the blood test (10:10 am) I had not taken one for 24 hours.
The new dosage that the GP has suggested is 75 mcg (Teva UK )
With regard to vitamin levels, I last had these tested in 2020: B12, folate, AFP, Vit A & E - all normal.
I was diagnosed with "insufficient" Vitamin D in 2015 and since then have taken 1000 IU D3 per day. Last November I had a DEXA scan which indicated osteopenia so also take a calcium supplement.
Before considering changing dose levothyroxine recommend getting full thyroid and vitamin testing including thyroid antibodies
all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If also taking T3 or NDT - day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last 1/3rd of daily dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Janice, I read this, and thought OMG thats me. I have been in touch with the folks at healthunlocked who have advised getting a blood test, so I am going to get a private test from Medicheck as soon as I can as I feel I cannot go on like this. GPs dont know enough about the condition. I am on 75mg levothyroxine.
Hi nognora. Sorry for delay in getting back to you. I requested a printout of my blood results which I received the same day by email. I still can't get my head around test results, even after being diagnosed in 2003! So it seems I am lucky that my GP will request test for free T3 and free T4 as well as TSH. I'm sure she would add tests for vitamin levels if I asked her. I live in Somerset so maybe things are different to where you are.Have you ordered your private test yet?
I was going to order the test onMonday, but having thought about it, i decided to ring my doctor and have another go at a diagnosis. I had radioiodine in 2021, since then I have been on levothyroxine, and my tests have been normal, but like yourself I am not. Anyway I spoke to my Doctor, I thought I had better get her advice about getting a test. I am seeing her on Tuesday and will go armed with the information that have gained. I need her on my side, maybe she will agree that I need a more informative test, but I need her on my side. Maybe its something else, but in nearly 3 years, and goodness knows how many tests I am still unwell. and after seeing nearly all the Doctors at my practice they have nothing, but you and I know how awful it is feeling unwell all the time. I will let you know the outcome.
I have been slightly overmedicated a couple of times , and some of what you describe is similar, particularly the barking dogs, loud noises ,and feeling anxious .I would suggest it is worth giving a slightly lower dose a try for couple of months at least.
Trying it is the easiest way to rule it out.
I would suggest, if possible , get yourself a private TSH/fT4 /fT3 test as soon as possible , before you lower the dose , so you know what your fT3 /fT4 level is now ( the NHS will be unlikely to do you an fT3 without an awful lot of messing about and arguing for weeks )
Also it would be good to get hold of some of your previous blood results so you can compare your recent 0.11 TSH test to where it was at times when you felt better.
Low TSH by itself is not always a reliable indicator of overmedication, hence it being recommended to get full testing before changing dose , but In my case the TSH was actually a good indicator... when feeling ok it was usually 0.04 -0.09 ish, but when actually overmedicated (proved by a slight dose reduction improving symptoms).... my TSH on both occasions had fallen to 0.01/0.02...( my fT4 is always 'all over the place' even on the same dose so in my case fT4 was not such a reliable guide).
If the TSH now is lower than your 'usual ' , (and/or fT4 is higher than your usual) then if i were you i would try a very slightly reduced dose .. but i wouldn't go straight to 75mcg .. i would lower it by just 12.5mcg to 87.5mcg first to see how that feels .... i reduced from 125mcg to 112.5mcg which was better , but GP later reduced further to 100mcg which gave me chronic constipation , so went back up to 112.5mcg again which has proved to be OK.
Ask GP if you can 'trial' it for a bit , but state you'd like to be able to go back up if it's worse. Get some 25mcg and 50mcg tablets prescribed so you can take 87.5mcg (either by taking 75mcg one day and 100mcg the next alternate days ... or split a 25mcg in half each day to take 75 +12.5 each day)
In my case , the first 5 weeks did not feel like an improvement, but from week 5 /6 onwards it was . and improvements continued gradually over the next few months ..much more mentally and physically relaxed , slept much better , lots of recurrent muscular /tendon type aches and pains that i hadn't associated with thyroid all drifted away.. and haven't returned. ....barking dogs and banging doors are no longer a problem. i'm chilled . it's quite nice .
Hi tattybogle. I have now received my results:TSH = 0.11 (reference range 0.38-5.33mu/l)
Free T3 = 7 (reference range 4.00-6,60pmol/L
Free T4 = 12.7 (reference range 7.9-20.0pmol/l
And yes, this was on the NHS!
It's strange you mention muscular/tendon type aches and pains. Last June I started feeling stabbing/burning pains around my shoulder blade. I contacted my GP (no face to face visits of course!) and she prescribed Naproxen for 2 weeks. They worked fine for the pain but made me very sleepy and as soon as I stopped taking them the pain returned. I had an x-ray and the result was "consistent with arthritis". The GP referred me to a physiotherapist who gave me exercises to do at home. I'm still having pain in my shoulder and top of my spine, this is almost a year and no-one has even examined me. I'm considering acupuncture or osteopathy.
i had a long history of recurring nasty problems with pain from tightening muscles/ almost in spasm under my shoulder blade on one side , and on top of the shoulder near my neck .. and lower back pain in the sacroiliac joint area. No amount of physio therapy therapy of any sort, or any stretching /exercise regime was ever able to get rid of these permanently. they always came back whenever i did anything slightly 'wrong'.
Some of this was definitely from hard physical work , so in one sense it's not too surprising its not a problem anymore cos i don't do any where near so much physical stuff anymore...., but , it's interesting to note that both these problem areas have totally ceased being an issue since i lowered my dose from 125 to 112.5mcg. Could be unrelated to my dose of Levo ... but, i can't help wonder if it is related ,since i'm certain that the calf muscle tightening that i've noticed IS directly related to experiments when i've tried increasing my dose slightly again, and goes away again when i lower it.
..... got to go out, will post this so i don't loose it and finish it in a bit .
it's very unusual to have such a high fT3 when fT4 is so relatively low, you would expect this in someone was taking T3 , but not in someone on levo alone. I don't know what could be causing that in you, but it does make sense that lowering the dose of levo might be the first thing to try... although it's very likely your fT4 will then go lower to.
So your results, and what to do about them are a bit of a "?" to me.
Do you happen to have any previous results where they tested fT3 when you were feeling OK on Levo ? might be an idea to get the GP to look this up in your records ( or get hold of your historic results and have a look yourself)
People do have all sorts of different levels/ratio's of T4/T3 naturally ,, so i suppose it's possible you've always had relatively higher T3... but even taking that into account ,it is still unusual to have such a high T3 with such a low T4.
In people who don' t take extra T3 , 'natural 'T3 can only come from 2 places .. either your thyroid is producing it directly (or ? a 'hot' nodule on your thyroid) .. or it is being converted from the T4 that you take in Levo (and the T4 that your thyroid produces)
Or possibly i think ? some other medications might have an influence on increasing the conversion of T4 to T3,, but i'm not sure about that.
You're not taking anything with iodine in are you ?.. That's a long shot....
I'm juts really struggling to think of anything that would only increase only the T3 like that, without also increasing the T4 at the same time.
Maybe it's too early and my brain isn't working properly yet .
Hi Janice. To me this screams out adrenal problem. I was lucky enough to see Dr P before he retired I’d read his book and in it he explains how the adrenals should be treated before starting on the thyroid. He tested my ankle reflexes and my balance . My balance was dreadful, my reflex non existent and my BP fell when I stood up (another test for adrenal weakness - it should go up a little).
Here is an article by Isabella Wentz with her description of it. Although I’ve had the benefit of being treated by Dr P, since he retired I’ve been a bit lost and I wasn’t sure if I should still be taking the adrenal glandulars and cut back on them. The result is sleeping for ten hours and still having brain fog until lunch time and being pretty grouchy. I’ve decided it’s time to increase them again and be more careful about what I eat.
My edocrin doctor, not my GP, is the only one who reviews, recommends, and adjusts my medication. I can tell when I need an adjustment of the Levothyroxine, usually I need a slight increase. I don't have the symptoms you described, only muscle and joint pain and a tired feeling. These are corrected by a slight increase (25mg) and after a few days I start to feel normal again.
I personally find that by lowering or raising by 12.5 mcg T4 helps me helps me not to over shot my sweet spot. In the past when Dr's would change my dose by 25 mcg either way it just didn't feel right.Slow and steady wins the race.
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