Hi. Shockingly, I have recently realised that I might be having allergic side effects to the levo I have been taking all these years. I am shocked by this. I didn't even know that Levo could have side effects because I was never told that I should be on the lookout. I have visited so many private endos telling them about my symptoms (stated in timeline below) and they have only told me what is wrong with my body and changed dosage of TSH slowly over the years. NO ONE has bothered to look into possible side effects of the medicines I have been prescribed.
Nov 2022- I was on 125 and 150 on alternate days. During this period, I was taking Accord (100+50) and Teva 25. I developed palpitations, extremem mood swings, breast soreness, too much hairfall, 5-6kg unexplained weight gain etc etc. while my TSH remained stable. Also developed extreme muscle cramps in legs, ankles and feet, stiff back, stiff muscles in other parts of the body.
Jan 2023- I visited a GP privately and told him all this. He changed my Levo to 150 and so I ended up being on Accord tablets (100+50) and continued having those symptoms.
Dec 23- I went for a full body detox and cleanse in Ayurveda, where I stopped taking Levo medicines. Managed to lose weight, lost the brain fog, muscles were fine, mood was amazing etc.
Mar 23- After the full body detox, ayurvedic doctor advised to start back on Levo. I restarted the same Accord tablets I had earlier (100+50). Within 2-3 days of it, muscle cramps, brain fogginess, mood swings, hair loss, ankle pain returned. It has been 4 weeks taking it now, and my weight has started increasing again while my diet and lifestyle have remained the same as before.
Only after restarting the medicines in March have I realised that I am suffering from the side effects of these tablets.
I want to talk to my GP and get this sorted. However, I feel that GP wont take me seriously.
Please tell me what I should do? What do I need to tell my GP? And what is the best thing for my condition? I also have the option to go private. So I can explore that as well. Just need some guidance on next steps.
Thank You
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Dsk11
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Well known phenomenon that (initially) when stop levothyroxine symptoms vanish (briefly) before increasing hypothyroidism can make you extremely unwell
You need FULL thyroid and vitamin testing
GP might test vitamin levels
Extremely difficult to get NHS to test Ft3
How old are you
Pre or post menopause…..or peri menopause
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 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
What vitamin supplements are you taking
Is your hypothyroidism autoimmune
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
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
So we can offer better advice, can you share blood test results (with ranges in brackets) for:
TSH
FT3
FT4
a) prior to stopping Levo b) after stopping Levo
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
Side effects, adverse reactions, intolerances, new symptoms onset, whatever we like to call them, what’s clear is that many people like you and I don’t seem to get on with levothyroxine.
I can share I have various effects depending on product and dose.
Last year a particular batch of Accord was as mentioned on the forum (try searching for it) as being problematic. I can confirm that is the batch I had too. So, perhaps we are the unlikely ones.
I have stopped the levothyroxine for short periods of a maximum a week, and that resolved ‘side effects’ to some degree.
If the problem is Accord, it’s worthwhile trying another brand.
It’s worth sharing with your GP that MHRA, NICE, and BNF all agree that some patients do worse on certain brands and a change in brand should trigger a thyroid blood test too
Sorry to hear your suffering and I am in the same situation. I have decided to stop my levo. Could you please share how you stopped. Was it all at once or slowly? These side effects are awful and it never has helped me much either. Thanks.
I am not being sarcastic here but I just can’t tell the difference. Being off levo even for a few days I see people (me too) benefiting. I have not waited for the world to crash down on my head by not taking it for longer.
Maybe, as is often refrained on the Forum is that Levothyroxine just is a lousy medication - cheap, clumsy, primitive, unsophisticated hammer to crack a nut type medication. At least for those of us for whom it simply just not do the job it’s allegedly designed for.
Orthodox medication and its application is often ‘cack handed’ in my experience. No (w)holism. No tailoring. Pretty slapdash really.
I had full thyroidectomy in 2019 because of graves thyrotoxicosis, after being asked by my surgeon "did I have any questions before I go under I only had one.." what happens when you take my thyroid out"
He proceeded to tell me I'd go on T4 levothyroxin,.. and there's the problem I said.
"why" I told him of my bowle issue having colitis and being lactose intolorent and the fact I have a bad time on synthetic medication.
He told me he knows no one that has ever had a problem with any thyroid medication and told me I'd be fine, I'd never look back.
If only that were the case, since trying both thyroid medication T4, T3 (not in combination) I have suffered greatly the obvious symptoms or side effects were gastric which I expected... Cramping, diarrhea, inflammation of intestines bloating I look 6 months pregnant when on the tablets this leads to bad absorbtion, my bloods are awful T3 VERY Low.
But I also suffer from the most horrible body pain, headaches, bad metalic taste in my mouth a weird buzzing sensation in my legs and ankles, sweating and palpitations (not on enough to be over medicated).
I took myself of both first the T4 to see if any of the side effects resolved, they did, I would say the only thing left was the buzzing sensation in my lower legs, but I felt way better of T4 than on it, same with the t3 took myself off it and felt way better.
I've been of all thyroid medication since January 31st (no thyroid 🤦) because the stupid endocrinologist I saw 1, never listened to me, never took me seriously and put me back on the worst thyroid medication teva which was by far the worst for me.
I refused to take it hence being off it since January or until I can get on another one until I see a new endocrinologist in June.
But again I felt way better off it even after 8wks, no gp or endocrinologist have bothered about this, I have now managed to get another thyroid medication T4 and started it on Monday 🫣 it normally takes around 3/4 days for me to notice gastric issues, but to my horror I've woke up today with the worst headache... Like an hangover headache (I don't drink any alcohol)
GPS and endocrinologists have little to any knowledge of thyroid conditions and know less about reactions to this medication, I was told time and time again "it's not the thyroid medication" "but then why do the side effects go when I come off said medication"
Never a straight answer from any so called endocrinologist or gp, I'm hoping this endo in June can help me, but I won't hold my breath 😡 we are indeed treated appallingly by the very people who are supposed to be looking after us🤷
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