I've been reading for a while and thought I should present my case, hoping for thoughts and experiences.
I had a thyroidectomy due to PTC in June 2022, and it seems that I can't take any thyroid medication without inducing horrible side effects.
Over 2.5 years I tried several different doses and medications: Synthroid, compounded T4, added Cytomel, Teva-Liothyronine, compounded slow release T3, T3 only, and ERFA NDT. And every one of those is making me sick - just in a different way.
It started about 5 months after the surgery, about 2 months after a Covid infection, and about 2 weeks after my first Synthroid dose reduction due to suppressed TSH.
Symptoms got gradually worse, to name just a few: weakness, shakiness, muscle pain and stiffness all over, mental confusion, anxiety, clumsiness, racing heart at night, the feeling of an electrical current running through my head and body, and, very worrisome, a vasculitis rash on my lower legs.
It could certainly be “unrelated” as the endocrinologist claims (without investigating). I just don’t think so. My symptoms change with every dose change and with every new medication. They wax and wane in relation to when I take the pills, and I can make them go away by not taking my medication at all, which I have done a couple of times, just for a day, to see what would happen. And I feel quite normal again.
I have a caring, but helpless family doctor, a nasty endocrinologist, and a lazy rheumatologist. None of them comes up with anything.
I’ve had so many blood tests, all inconclusive. A higher rheumatoid factor, but I’ve had this since my 20s. The only other positive antibody is for Histone, which could indicate drug induced lupus. I could find one single case of Levothyroxine induced lupus online, and it apparently was added to the list of potential causative agents. But even with that, there is no treatment offered, no conclusion, no plan of action, only more tests, referrals and follow up appointments “next year”. I don’t think that they believe me when I say it’s the medication. It's like screaming under water. It seems to be such a taboo.
I haven’t found anyone yet with the exact same symptoms. People in a group I belong to suggested that I am undermedicated. My TSH was suppressed until about a year ago, and elevated since. So I know that I should increase. But every time I try, I feel so much worse.
Then again, I think, am I really THAT unlucky, to be the one in a billion who can't take a "bioidentical" hormone?
Or do I have a disease that interacts with thyroid hormones, if there is such a thing?
Or may it be normal to go through a terrible time when increasing medication?
Has anyone here experienced anything similar, and found relief?
Thank you for reading!
Written by
Shwal
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Am I right in thinking that your dose is being changed on the basis of a TSH lab?
If so your problem likely lies there!
TSH is not a reliable marker especially after replacement thyroid hormones are added
TSH is a pituitary, not a thyroid hormone. It reflects the level of thyroid hormones in the serum but does not give the level of the individual hormones, which is important
TSH, FT4, FT3, vit D, vit B12, ferritin, folate and thyroid antibodies TPO and Tg
Do you know how well you convert T4 to T3
High FT4 with low FT3 indicates poor conversion and therefore lowT3. Usually we need initially to increase levo but as FT4 reaches the top of the FT4 range we need to add a little T3 instead.
Low T3 can affect any, or every part of the body.
Unfortunately treatment of thyroid disease is currently very poor which is why over 140,000 patients have arrived here looking for help
When we are hypothyroid it is normal to feel worse after starting to increase your dose.This is an indication that the dose is still too low and needs to be very slowly increased by as little as 5mcg every 6/8 weeks until symptoms resolve
Medicating by TSH is a quick, cheap, inacurate method of testing and it looks as if this is at the root of your problem.....that and ignorant medics
So to start....
a full thyroid test (as above)
establish conversion status
test thyroid antibodies to check for Thyroid Autoimmune Disease/ Hashimoto's
FT3 followed by FT4 are the important results....not TSH!!
With that info we can start to see what is going on and how to fix it
Yes, of course they went by TSH. And it's a one way street. No-one asked me how I was feeling when they started reducing my dose. It's like sitting in a prison cell and getting your food shoved under the door.
Except for B12 and folate, all the things you listed were tested at one point. But not all together on a regular basis. When tested, there were no thyroid antibodies, VitD was normal, ferritin was high once, normal the next time.
After having only TSH and T4 tested in the beginning, I asked for Free T3, and I now have a requisition, which I can take every six weeks. I have SO MANY lab tests, I don't even know which ones to show you ... Here is an extensive selection.
Here is the first test after surgery, when I had no symptoms:
October 2022 on 125 mcg Synthroid
TSH 0.015 (0.465 - 4.680 mlu/l) - low
Free T4 28.1 (10 - 28.2 pmol/l) 99.45% of ref range
no T3 tested
The first test with Ft3 included, when I was already feeling pretty shitty:
January 2023 on 88 mcg Synthroid
TSH 0.062 (0.465 - 4.680 mlu/l)
Free T4 17 (10 - 28.2 pmol/l) - 38.46% of ref range
Free T3 4.280 (3.1 - 6.8 pmol/l) - 31.89 % of ref range
Ratio: 0.25 (0.31 - 0.33)
First test after adding T3:
24 November 2023 on 75 mcg Synthroid + 5 mcg Liothyronine
FT4: 13.3 (10 - 28.2) pmo/l 17.55% of range
FT3: 4.430 (3.1 - 6.8) pmo/l 35.95% of range
TSH 0.016 (0.465 - 4.680) mlU/L
T3:T4 ratio: 0.33
First time my TSH came out of the basement:
31 January 2024 on 62.5 mcg Synthroid + 5 mcg Lio
FT4: 11.2 (10 - 28.2) pmo/l 6.59% of range
FT3: 3.49 (3.1 - 6.8) pmo/l 10.54% of range
TSH 1.23 (0.465 - 4.680) mlU/L
T3:T4 ratio: 0.31
After I decided it may be better to have less T4 and more T3:
June 2024 on 50 mcg Synthroid + 15 Lio
TSH 1.82 (0.465 - 4.680) mlU/L
Ft4 6.2 (10 - 28.2) pmo/l
Ft3: 3.9 (3.1 - 6.8) pmo/l
When I took less and less medication because I felt so bad after each dose, and I can't even remember what I was taking ...
TSH 3.7 (0.465 - 4.680) mlU/L
FT4 10.1 (10 - 28.2) pmo/l
FT3 2.79 (3.1 - 6.8) pmo/l
And the last one, on a trial of T3 only
TSH 8.98 (0.465 - 4.680) mlU/L
FT4 1.3 (10 - 28.2) pmo/l
FT3 2.75 (3.1 - 6.8) pmo/l
Since then, my family doctor and I decided that I should increase my Synthroid again, so over the past couple of weeks I've been trying to take 75 mcg of T4 plus 5 mcg of T3. But every Synthroid dose turns into a torture a couple of hours after I take it, and it only gets better after several hours. I've tried to take it at bedtime, but then I spend the night in a panic. And when taken in the morning, the first half of my day is ruined, and I start feeling okay after 2 p.m.
Looking at hormone levels before surgery, my T4 was always at the bottom of the range with a TSH of 1.2 or so. Not sure that this matters now.
OK....as I suspected your FT3 is consistently low.
I usually say....For good health every cell in the body must be flooded with T3 by way of an adequate and constant supply.
I understand the importance of T3 being someone who needs a daily supraphysiological dose of T3-only. No T4.
October 2022 on 125 mcg Synthroid
TSH 0.015 (0.465 - 4.680 mlu/l) - low
Free T4 28.1 (10 - 28.2 pmol/l) 99.45% of ref range
no T3 tested
You say you had no symptoms when on 125mcg T4/Synthroid
Was 125mcg the largest dose of Synthroid you had taken
I think you had no symptoms on 125mcg Synthroid because it was converting to an adequate level of T3. Your TSH was low because the Synthroid dose was relatively high....but that is only part of the story.
over the past couple of weeks I've been trying to take 75 mcg of T4 plus 5 mcg of T3.
I suggest you need a good bit more T3...
take the 75mcg T4 but slowly increase the T3 by 5mcg every two weeks until 20mcg T3 . Or if you feel that is too much increase by just 2.5mcg at a time....we sometimes have to increase very slowly
Hold that dose for 6 weeks and test. Making careful notes of all changes. It will be a bumpy journey until your FT3 rises to a therapeutic level.
T3 will naturaly lower TSH and FT4....that's just how it works
A couple of weeks after an increase isn't enough time to make a judgement....it takes 6 weeks for a new dose to settle before considering a further dose change
There is no quick fix...but with the correct treatment a fix is possible!
I have done all the tests that you mentioned and only my TSH level is elevated.bi have spent a lot of money on countless tests and seen alternative medicine practitioners —no answers as to why my body cannot tolerate thyroid medication.
I also started at a small dose of medication and had side effects. Increasing the dosage ever so slowly put me in the ER with severe chest pains. Some of us cannot tolerate thyroid medication regardless of what we try to help ourselves and I am one of this people.
I'm so sorry you are in that place..but if your thyroid hormones are low, particularly T3, then you need to find a way to add replacement hormone. It's not an option, it's essential .
The heart needs a great deal of T3 and deficiency will affect the heart....and has the potential to affect every part of the body
Thyroid medication is bio-identical so it's unlikely. the hormone is the problem.....it is very possible however that a filler in the tablet is responsible
Humanbean has already given you an example of this
it's hard, I understand that, but you need to try and be more positive, despite your experiences.
Have you optimised vit D, vit B12, folate and ferritin these nutrients are essential support thyroid function
Relying on TSH, particularly after adding replacement hormone, will not help despite what medics tell us.
Science proves that it is NOT a reliable marker and should never been used as such. It's a cheap, quick way to get a result....but not a reliable one
It amazes me that it was allowed to become the standard treatment. You cannot adjust thyroid hormone levels on the basis of a pituitary hormone/ TSH level and doing this has possibly over time skewed your levels.
You need to start with a full thyroid test done at 9am when levels are settled....
TSH, FT4, FT3, vit D, vit B12,, folate and ferritin and if not already tested then thyroid antibodies TPO and Tg....TSH alone is pointless!
Post any recent labs and the medication you were taking at the time and the symptoms you experienced
Symptoms are a vital part of diagnosis and must be factored in
I’ve had similar issues and believe my intolerance of thyroid meds stem from it causing v high histamine levels… just a thought though. I’m still working out how to effectively lower histamine and get well and get back on thyroid meds.
Have you tried a b6 supplement to lower histamine levels? Use the active form pyridoxal 5 phosphate! Worked for my daughter who developed a histamine intolerance after having COVID last year, was having nausea after histamine foods, this helped to sort her out 👍
Yes to me the mention of Covid flashed a warning signal: I’ve had Long Covid for over 4.5 years, and some get great histamine problems. Mine are largely high HR/ BP with diagnosis of ‘postural hypotension’ too, but GP insisting the high HR was ‘overmedication of Levothyroxine’ ( surpressed TSH caused by 15 mcg T3 from private endo.)…fortunately an NHS endo.agreed the high HR was not thyroid related.
No-one asked me how I was feeling when they started reducing my dose.
Some patients have reported on the forum that their doctor told them "Only blood tests count, symptoms don't matter." I don't know where those patients lived, but I wouldn't be surprised if some UK doctors have said this. And misogyny is rampant in the medical profession everywhere, I think.
Except for B12 and folate, all the things you listed were tested at one point. But not all together on a regular basis. When tested, there were no thyroid antibodies, VitD was normal, ferritin was high once, normal the next time.
Do you know any results for your B12 and folate, including reference ranges? If yes, could you post them, including the units of measurement? And you mention ferritin being high then normal, so those results would be useful too. And what was your vitamin D level? "Normal" might differ depending on units of measurement, reference ranges, and the country you live in.
A full iron panel would be useful, which consists of ferritin, serum iron, transferrin or total iron binding capacity, saturation. In addition, if possible, although rarely forming part of an iron panel - CRP (a measure of inflammation), haemoglobin, MCV (a measure of the average size of red blood cells).
Do you take any other prescribed medications? For example, do you take statins?
There are various fillers used in tablets that cause issues for some patients. E,g, Mannitol, acacia, lactose. I have used anti-histamines to try and help my tolerance of various prescribed tablets, and they do help but I don't personally think they are a good long-term solution to lack of tolerance.
This link might be of use if you are taking drugs prescribed in the USA :
It is a database of information listing ingredients and labels used for medicines and hormones. So, it doesn't tell you just the active ingredients it tells you all the other things there are in a medicine. If you have tolerance issues with drugs A and B but not C you can look up the list of ingredients and find out what A and B have in common, and what is missing in C to try and find out what is causing your intolerance.
Personal anecdote : I had big intolerance problems when I first started taking Levothyroxine. I experimented and tried NDT and T3 and found that I coped better with T3 than anything else, even though it wasn't great either. During this time I was struggling with my iron and ferritin levels because I absorb it very poorly. I started treating my own iron and it took several years to raise both my ferritin and serum iron. But once I managed to optimise them I found, for the first time, that I could tolerate Levo. I now take a combination of Levo and T3 and feel better than I ever did with any other thyroid treatment.
For other people their tolerance might be improved with better levels of vitamin B12 and folate. Low levels of vitamin D can also cause a lot of problems in people with thyroid disease.
Another thing to note is that, if iron is poorly tolerated and poorly absorbed that there are several different kinds of iron supplement available and experimenting to find the best one for you is essential.
With B12 there are also several different supplements - and they might raise your levels but make you feel no better. I had that experience with cyanocobalamin (useless for me) and methylcobalamin (the one that works for me). And with folate I've tried folic acid (useless for me) and methylfolate (the one that works for me).
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For people like you with no thyroid, not taking thyroid hormones is not an option. Thyroid hormones are not an optional extra for the body. They control the metabolism of every single cell in the human body.
I have hypothyroidism, and I also struggle with taking any type of thyroid medication. I’ve tried all kinds, but even at the smallest dosage, I experience side effects. For me, the medication speeds up my GI tract, makes me shaky, causes insomnia, muscle pain, and more. I’ve undergone countless blood tests and had my vitamin levels checked. I’ve even spent a lot of money on alternative doctors, which turned out to be a waste of time. Most doctors don’t believe me when I tell them the issues are caused by the thyroid medication. Honestly, I feel so much better when I don’t take it.
Thankfully, now that I’m a senior citizen, my endocrinologist has said that as long as my TSH stays below 10, I don’t need to take medication. I’ve had some success with over-the-counter glandular thyroid supplements. The strange thing about my 14-year thyroid journey is that I’ve never had typical hypothyroid symptoms, no matter my TSH levels. I have plenty of energy, my hair doesn’t fall out, and I don’t gain weight. I really believe the TSH test isn’t accurate for everyone. My other thyroid levels have always been normal, even though my TSH remains consistently elevated.
Dippy Dame and Humanbean have given excellent suggestions. There’s a chance you may be sensitive to a filler in the the thyroid meds. You might ask if you can get Tirosint - it’s levothyroxine in a gel cap with no fillers. Levoxyl is a brand that has fewer fillers than Synthroid. Changes usually need to be made slowly and one at a time - don’t change brand or type and dose at the same time, and give the changes time to take hold.
Thank you, Patti. I'm in Canada, unfortunately. Tirosint is approved, but as far as I know, not marketed yet. And I think we may have one other T4, which is Eltroxin. I haven't tried that, but I tried compounded with only cellulose. No luck.
Sorry - just jumping in and haven't actually read through all these replies but just asking - have you tried liquid T4 ?
If so - and to no avail - maybe Natural Desiccated Thyroid in capsule form with just one/two stabilisers / fillers - of your choice - will suit you better.
Yes, it's the only one from the shelf. I tried it, but it caused the same symptoms as the synthetic ones. We also have compounded desiccated thyroid, I haven't tried that yet.
The 2 leading brands of NDT are American Armour and Canadian Efra -
both of which generally come as tablets - but a compounding pharmacy could make the Thyroid USP into capsule form for those with sensitivities to the bulking agents / fillers -
You mentioned the brand TEVA in your query. I don't get on with this brand's Levothyroxine tablets. Controversially they were suspended from dispensing some years ago but returned to the market having had the formula tweaked a bit.
Some say it's the mannitol ingredient in Teva that makes people ill, others say Teva is unstable at higher doses and loses efficacy as it doesn't keep well.
All I know is that I'm better off on other brands.
If you're using Teva, request an alternative brand and see if that makes a difference.
I hope you find a solution and get your life back soon.
I struggle with meds too. I had RAI 5 years ago, I'm going to try NDT, it's expensive, but I cant stand levo anymore. But one thing I will say is, if I try to get my levels "in range" I feel like crap. I'm currently on 75mcg of levo. Usually vencamil as its lactose free. Had to have Teva this month as my chemist couldn't get it, god I feel crap! Anyway, I sit below range and I feel so much better. Once you've had your thyroid removed, I don't believe we can go by levels, we have to go by how we feel.
A sad truth completely ignored by the medical profession is inadequate thyroid hormones drive deficiencies in all essential cofactors required to make the replacement meds work effectively.
And then when meds aren’t allowed to work well for us, they generally aren’t just excreted from the body but a percentage are metabolised into inactive forms that lessen the chance or totally prevent future meds from working.
Look at your adrenal health. This suffers hugely when we become deficient in thyroid hormones (and after an op), and is required to support thyroid meds when introduced. (eg T3 & cortisol have complex interactions).
Look at your iron levels that are commonly low in hypos and a common cause of preventing good use of thyroid meds. Check nutrients and supporting minerals all needed for the whole business of thyroid hormone conversion.
When we have so much wrong, recovery can take a long long time and may need a step-by-step approach.
I had my thyroid removed back in 2015 for the same reason as you. Aged 68 year old. I had never had any thyroid problems before so I was in the dark about anything thyroid.
I am living in France and the day I left the hospital my professor surgeon handed me a letter stating that my TSH must always be supressed. I was then started on 100 Levo. After only six months I could not get up of the floor without help. I didn't realise that I probably only needed an increase in Levo.
I then joined this site and bought NDThyroid s . I never looked back and became as I was before, walking, Yoga etc.etc. My blood test have always got to be within a small range for me to feel well.
After the Covid years my medication wasn't working and I started to fall over. Anyway, it has taken me nearly two years to get back again. The body just hates being messed about.
Had you a thyroid problem before yours was removed. Blood tests will help you. Post them on here for answers. Good Luck.
I never had an issue with thyroid hormone levels. And none of the symptoms I have now. Actually, I had a lobectomy first and lived for two years with half a thyroid, feeling well and no medication. My endocrinologist pushed me into having the other side removed. It turned out to be healthy and functional, as I learned from the pathology report.
I believe in what you are going through with Levothyroxine Shwal , as for the past 14 years I and my Son have been going through much the same when our Levothyroxine was changed from Goldshield Eltroxin to Mercury Pharma Levothyroxine, which was supposedly the same as the Goldshield Levothyroxine. Except it affected my Son and me, and a few others, with skin problems. I believe it was something to do with the Acacia Powder in it (sorry everyone, if you have heard this before), in that the heat treatment of Acacia Powder was changed at some point (I don't know when) and this could have affected how it behaved for us. I know I read on the old Thyroid UK site on a very old copy of Handbook of Medical Excipients, that unless Acacia Powder was specifically Heat Treated that it shouldn't be used with soap. This, I could taste in my mouth whenever I used soap, or if dishes were not rinsed very well, nor laundry double rinsed after washing. We are still suffering and had occasion to see GP this morning, when I mentioned this again, as our skin is terrible at the moment. GP thinks it is Excema - it isn't.
I sincerely hope you aren't suffering like us, and if you find an answer, please let me know what you find out.
I recently collected a few links to articles/papers which reported issues with levothyroxine. Some of them seem very serious and all presented problems in how to treat.
helvella - Serious Issues from Levothyroxine
Some references to case reports, etc., of adverse reactions to levothyroxine tablets.
I saw the link. Actually, it encouraged me to post.
Even in Thyroid groups, and among people who have years of personal experience, it seems like a foreign idea that Levothyroxine or Liothyronine itself can cause disease. It's often about the right dose, medication and supplements, which, I know are very important and adjustments seem to solve many people's issues. Or they feel better when changing brands.
But it also seems to me, that many are searching endlessly, without ever finding relief, or even understanding their health issues. They are being dismissed by their doctors, or diagnosed with new "unrelated" diseases. Those often seem to be diseases that can't be proven 100%, like Fibromyalgia, or in my case, cutaneous vasculitis of unknown cause. Or diseases that can be blamed on something else, however unlikely. But the vasculitis in my case IS being triggered by increasing thyroid medication, and the symptoms also always hit close to a dose, just around the time where you would expect the peak. And, if I take no medication for a day, that's when I start feeling well again.
I noticed this first on the days I went for bloodwork, and did not take the pill first thing. I suddenly had a bounce in my step and was in a good mood. That only lasted until a couple of hours after getting back home and popping the pill.
Since Levothyroxine was added to the list of potential medications that can cause drug induced lupus, and since I have the matching antibodies, I was thinking that this would get me some medical attention from my sleepy doctors, or a suggestion for a treatment. But no ...
I am open to the possibility that I have an underlying disease, or genetic flaw. I think if I didn't, it would be able to take the medication just like everyone else.
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