I would really appreciate some advice after feeling like I have been in dead end for quite some time. I had Covid in March 2022 and since then have been having thyroid issues (along with other issues).
My latest blood tests show:
TSH: 7.07 munit/L
T4: 14.1 pmol/L
T3: 5pmol/L
TSH receptor antibodies: 3.98 unit/L
I have been told by different doctors that this could be subacute thyroiditis, could be Hashimoto's or was even told that the blood results could be an error!
I think I might have nerve damage, as I went through a period of extreme muscle weakness and although I managed to recover from this I still get very unusual spasms all over my body. Still waiting for a Neurology appointment...
I was on a small dose of Levo for about 4 months, but could not tolerate it at all and it made all my symptoms worse. The more I took the worse I felt. So eventually I had to make the hard decision to stop taking it, but the TSH is getting higher and higher and I don't know what to do.
Written by
rainbowcabbage
To view profiles and participate in discussions please or .
Hi rainbowcabbage, welcome to the fourm. Love the pseudnym!
Well, now, that TSH is very high and definitely looks hypo. When was this test done? How many thyroid tests have you had? And what were the TSH results on the others if you've had them?
I cannot interpret the FT4/3 because you haven't given the ranges. Ranges vary from lab to lab, so we need those that came with your results.
TSH receptor antibodies: 3.98 unit/L
Why did they test TRAB with a TSH over 7? That is for hyperthyroidism. If you're hyper, your TSH would be zero. Did they not test for Hashi's: TPOab and TgAB?
have been told by different doctors that this could be subacute thyroiditis, could be Hashimoto's or was even told that the blood results could be an error!
Oh, any excuse not to diagnose or do any further testing! If they think it's subacute thyroiditis they should continue regular testing to see if things sort themselves out. If results continue at the same levels it's not subacute thyroiditis.
There are blood test for Hashi's, as mentioned above. There's no way anybody could tell from just the results you've given us.
Of course it is possible that the result are due to lab error - especially the TSH. But in that case, you repeat the tests in a different lab. It's really not complicated. Doctors do make me so mad with their 'thinking' but no action.
I was on a small dose of Levo for about 4 months, but could not tolerate it at all and it made all my symptoms worse.
That could happen, if the dose was too small. It's a mistake doctors often make. They think that taking levo just adds a bit of hormone on top of what your thyroid is making, but it doesn't. It stops your thyroid making hormone so that you are reliant on the hormone that you are taking to be well.
If you're between about 10 and 60, a starter dose should be 50 mcg, no excuses! For the very young, and the over 60s it's 25 mcg. So, what did they give you? Also, after about six weeks, you should have been retested and the dose increase by 25 mcg. Did that happen? If not, I'm not surprised you could not tolerate it. It was making you more hypo.
the TSH is getting higher and higher and I don't know what to do.
The only thing you can do is keep on testing until the TSH gets high enough to attract the attention of these dozy doctors. If it goes over ten they're obliged to act.
In the meantime, if I were you, I would get my nutrients tested: vit D, vit B12, folate and ferritin. If these are not optimal - and they often aren't when you're hypo - not only will it make you feel bad, but you your body won't be able to use the thyroid hormone they will eventually get round to giving you.
Thank you. I really appreciate this! I think I will have to keep a closer eye on what bloods they are requesting for and making sure the correct antibody tests are included.
If you do a web search for "nutrient deficiencies after covid" you'll get a lot of links, with a lot of different opinions on the subject.
Bear in mind when it comes to nutrients the medical profession rarely thinks of vitamin and mineral deficiencies as the cause of poor health. Even when they do, they prescribe low doses and think that any result anywhere within the reference range is "fine", even if it is bottom of the range.
Ask your doctor to test as many of the following as you can persuade them to do :
Vitamin D
Vitamin B12
Folate
Ferritin (iron stores)
Selenium
Zinc
You should also consider taking the following :
Omega-3 fatty acids
Vitamin C
A good quality B Complex
Magnesium - There are a lot of magnesium supplements available but they vary in how well they can be tolerated and absorbed. There is no point in testing magnesium, and people can take magnesium supplements as long as their kidneys are functional. Any excess magnesium will be excreted by the kidneys as long as they are functional. Search for "Best and worst forms of magnesium supplement". Personally I take a small dose of magnesium citrate in orange juice.
Potassium - There are a lot of possible potassium supplements. Too much or too little potassium can adversely affect the heart rhythm and muscle function, so caution is needed. Personally I take a small dose of potassium bicarbonate powder in orange juice when my muscles start to cramp up, and also, in some people, it helps with reducing blood pressure and tachycardia. There are other potassium supplements available, but you would need to do you own research on it. Search for "best and worst forms of potassium supplement".
When I bought it, this company were selling on Ebay or Amazon, can't remember which, but I don't think they do any more. They do sell via their own website.
I bought 1 kg of the stuff, and I take one level quarter teaspoon in orange juice. I could have bought a quarter of the amount and still had some left after 2 or 3 years - luckily it isn't very expensive.
I’m a little confused though. I googled potassium supplements and found citrate and chloride. One being used to lower bp and the other for kidney stones. Which form is the carbonate or is it something totally different
I made the decision to use potassium bicarbonate several years ago so can't remember all the logic I used in making that decision. I know there are quite a few other types of potassium that are safe to supplement with.
I do remember trying potassium bitartrate (Cream of Tartar)
but that was simply too vile to swallow more than once!
I've found that potassium and magnesium supplements often taste absolutely vile and/or they are absolutely huge and I can't get them down, so I usually take them in powder form in orange juice.
LoSalt, as a major marketer of low sodium salt, says:
Contrary to what you may think, we don’t engineer the “salt out of salt”. Instead, we expertly blend two natural mineral salts: sodium chloride (i.e. regular salt) and potassium chloride.
Oh. I got that confused then. It's a long time since I looked into potassium supplementation. I do know that there are several potassium compounds that can be used as supplements, and in my case I decided on the basis of cost and whether I could actually bear to swallow them.
As a general rule I found that the potassium supplements I tried all tasted awful, and it was a case of finding the one that could be disguised with orange juice.
Despite being from the USA (hence needing some interpretation), I feel the scope of these ODS sheets is excellent. The NHS information is often little more than a sentence or two.
can't remember all the logic I used in making that decision
I love that comment. I think the same thing every time I look at all my redundant supplements. My husband loves showing my “insane” supplement stash to visitors. Have to admit, it does make me look pretty crazy
So you need to get FULL thyroid including correct thyroid antibodies and vitamin testing
How much levothyroxine were you taking and for how long and which brand
Bloods should be tested 2-3 months after stopping levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, 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.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
What, if any, vitamin supplements are you taking?
with 2 tests with TSH over 5, and symptoms and especially if you have high thyroid antibodies you should be started on levothyroxine
Levothyroxine doesn’t “top up” failing thyroid, it replaces your own thyroid so it’s essential to get dose increases as fast as tolerated until up to full replacement dose
We need the reference intervals for these results (numbers in brackets).It could be an assay error although I think unlikely.
I'm not sure but I think your TSH receptor antibodies are high. This would normally give you a low TSH because TRAb are usually stimulating antibodies but they can be blocking antibodies which may explain the high TSH and normal fT3, fT4.
What symptoms do you have now? Although your thyroid blood tests are unusual you may be clinically euthyroid. Unfortunately as far as I know there is no available assay for TSH receptor blocking antibodies (TBI) although there is one for stimulating antibodies (TSI). Thus, the best guide is your signs and symptoms.
Thank you. I'm feeling ok now compared with how I was feeling whilst on Levo and also before commencing on Levo. I'm more worried about how to manage in the future if the thyroid can't manage any longer. I do try to use my symptoms as the most important indicator. I still get bouts of tearfulness, hair falling out, constipation, but they come and go...
Accord do not make a 25 microgram tablet. Were you splitting them? If not, would have been another make.
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.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
It could be that the 25mg that I initially started with was by a different company. I only have the leftover packet that I took for my last round and I did split these tablets when I was weaning myself off. Looking at this list I really can't remember what the 25mg ones might have been.
Looking at the packing the Mercury Pharma ones looks familiar- it might have been these ones! But it's actually possible that the Mercury Pharma didn't cause issues, because I was the one who asked the GP to go to 50mg as I could not feel any difference. How very interesting. It seems I might be getting to the bottom of this with some excellent guidance! At the time I didn't even consider 'branding' would make any difference- silly me. I do struggle to tolerate other meds too so this doesn't really come as a huge shock.
I struggled to tolerate levo thyroxine. Part of this was due to the dose being too low and this causing more symptoms. I found the only way I could take and increase levo was to split my dose throughout the day. I take a dose first thing and the rest at bedtime.
Thank you. I think I remember desperately trying to do this during some days and it maybe did help a bit, but it's hard to remember. Then I asked my pharmacist and she said no it should be taken all in the morning 🤷♀️
It was my endocrinologist who suggested splitting the dose. There is a theory that the spike in hormones as a whole daily dose is too much for some folks and has an adverse affect on the effective processing of the hormones. Splitting the dose gives a lower spike and is gentler on the body.
It can be a roller coaster but you get through it as many on here have done. The most important thing is to learn about the thyroid so you can understand what's going on and be proactive in your treatment.
Hello, I'm just wondering... I think I read somewhere that there is also a list of different thyroid medications that reflects people's experiences whilst being on them? As in if there are bad side effects associated with some of them. Is it possible to see this? I think I'm a bit lost with all of this and terrified to give Levo another go.
People's reactions are so varied, I think such a list - while I can see the appeal - would have limited real use. We sometimes see two members who appear almost identical - but end up going in opposite directions as far as treatments and tolerability.
Sure, thank you anyway. I think I have read SO much in the last few months I might be getting confused. I'm sure responses to different meds are very individual like you said.
You did set me thinking whether any useful list could be produced. Unfortunately, right now, I suspect any list could be very misleading. Those who really understand might be able to make use of one, but those who have less understanding might misinterpret all over the place and miss what is best for them.
I guess you would have to gather enough data to infer any generalisability, but it could also be quite interesting/powerful if it happened that many people were not able to tolerate specific brands. Personally I have never reported adverse side effects to any 'authority' and I'm sure a lot of other people have neither...
Thank you!!! I am already feeling the warm fuzzy effects of the thyroid community.
The baffling thing is that I feel much better now being off Levo despite the TSH creeping up. I categorically could not tolerate Levo despite the blood tests normalising after taking them. I was started on 25mg and felt awful, increased to 50mg and felt double awful so I just stopped taking them. Now months later I feel better, but I realise this might not last. Occasionally I do get extreme tearfulness, constipation, hair loss etc. but I push through it because I know I don't want to go back to taking Levo. I'm not sure why they have not tested for the other antibodies. I will make sure to push for that.
Last time I had my vitamin levels tested was a year ago and they were all in good range except for Ferritin which was on the low side. I don't take any vitamins, but had to make other dramatic changes like stop drinking alcohol and caffeine altogether and I was also recently diagnosed lactose intolerant so dairy has gone too...!
I'm still confused because you would think the closer I am to optimal dose the better I should feel? Whereas I felt better on 25mg compared with 50mg and now feeling best without anything.
A small tip for using this forum. if you want someone to get a notification then use the reply button directly under their response. Alternatively you can tag people by using @thenthepersonsname.
So you have positive TPO antibodies meaning that you have autoimmune thyroid disease AKA Hashimoto's.
Many with Hashi's benefit from a strictly gluten free diet. A smaller percentage of those also need to remove dairy to help symptoms.
Exactly what was your ferritin result? It would be good to get all vitamins run again so that you have a recent result - ferritin, folate, B12 & D3.
Low vitamin levels, in particular ferritin can cause intolerance of thyroid hormones.
You could also try a lactose free Levothyroxine brand. Teva brand is lactose free although has mannitol which causes issues for some. Its very marmite and worth a try of Accord didn't suit you.
Thank you! As you can tell, I'm a complete newbie! That is so helpful and gives me plenty think about (and hopefully less to stress about). Is it worth trying the Natural Desiccated stuff? Or is this virtually impossible to get someone to agree to prescribe this?
So I checked the ferritin- it was tested in November 2022 (when I first started taking Levo) and it was 57ug/L (13-150) GP said this is on the low side?
Will do! As soon as I get an appointment... I'm dairy free, low gluten at the moment, but try to eat a lot of protein (eggs, meat, fish). I do also like veg especially dark green veggies. My weight is normal and now eating less carbs in the mornings I have lost even a bit more weight and feel overall better.
Hello, I tested my vitamins again recently and got the following:
Ferritin: 41 ug/L (13 - 150)
B12: 532 ng/L (197 - 771)
Vitamin D: 75 nmol/L (25 - 125)
Folate: 8.4 ug/L (2.4 - 20.0)
After these results I started taking Iron tablets (Ferrous Fumarate 210mg x 1 daily with orange juice. Luckily I am just about tolerating them) and GP said to test again in 3 months time.
So high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function 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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test as per NICE guidelines
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
I think in my case I feel better without dairy, but going completely gluten-free didn't seem to suit me so I'm back on the low-gluten diet so I can still have some benefit of having grains like rye. I am still experimenting with having the right diet for me but it feels like I am on the right track. I am determined to get on top of things though as even though I am 'treated' by an NHS Endo team, I feel they have done nothing for me and all the information I have gained has been online and from amazing forums like this.
I am considering going to a private Endo. I heard there is a list of private practitioners? Would I be able to access this? I really need someone knowledgable and empathetic (don't we all)!
Thank you! My GP tested for coeliac and it came back negative, but I have found following a low gluten diet helpful so maybe it's time to say goodbye to gluten indefinitely. Goodbye treats 😖
We really do encourage everyone to report issues. At the same time, it can be difficult to be certain - we might suspect an issue is due to a change of make (or whatever) but easier and safer to avoid that make than try to prove it.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Love the pseudnym!
currently undiagnosed - Updated blood test
Undiagnosed-thyroid hashimotos Newby.
Still here plodding along with an undiagnosed UAT
