I was put on levothyroxin for high TSH about three weeks ago. The first couple of weeks I had niggling headaches which thankfully seem to have passed but this week I’ve had crazy itching kick in!! It’s been awful, my hands, my scalp, my back. It seems to come in intense slots each place at a different time. I spoke to the dr who had given my a strong antihistamine and suggested I come off the thyroid medication for two weeks.
Just wonder if anyone else has experienced this? My thought was it’s perhaps too higher dose for me (my TSH was 10.3 but my 4 is fine apparently so I don’t technically NEED the meds this Dr said when asking me to stop).
Thanks in advance x
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Your TSH wouldn't be 10.3 if you didn't need thyroid hormone! (Barring some extremely rare conditions.)
Trying antihistamines is a good approach to proving that you are having a histamine reaction. But an awful approach to dealing with the problem.
There are many different formulations of levothyroxine even within the UK. You might find one affects you badly while the others have little or no such effect.
Some people seem to find that while they can tolerate things like lactose and mannitol and acacia in some products, when taken as part of levothyroxine they are more sensitive.
My medicines document has a matrix of the ingredients most often thought to cause problems against all UK makes.
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. It is sectioned by UK - rest of the world, and by T4, T3, desiccated thyroid, etc.
How much levothyroxine were you prescribed? If it wasn’t a large enough dose it may have made things worse rather than better.
And what brand did you receive from the pharmacy?
As others have said, you’ll still need thyroid replacement hormone. Your doctor shouldn’t have said what they said about you not needing it. You do! Taking levothyroxine isn’t like taking an antibiotic. It’s thyroid replacement hormone you’ll need to take for life.
Technically, this doctor has no idea what he's talking about. No idea how this all works. He said your FT4 is 'fine' because it's somewhere within the range, but that doesn't automatically mean it's 'fine'. With a TSH of over 10, I would imagine it's pretty low in-range, which wouldn't be good enough.
TSH is a pituitary hormone - Thyroid Stimulating Hormone. When the pituitary - a gland in your brain - senses that there's not enough thyroid hormone in the blood, it releases TSH to tell the thyroid to make more. If the thyroid doesn't respond, it releases more and more TSH.
The thyroid hormones are T4 and T3. The tests to measure these levels are called Free T4 and Free T3. Really 'fine' levels of these - what we call euthyroid levels, of someone who has no thyroid problems - are around mid-range, with the FT4 slightly higher in-range than the FT3. And, a euthyroid TSH would be around 1 - never higher than 2, because at that level it means your thyroid is struggling.
The ranges for these blood tests are derived from averaging out the results from a sample - too small sample, usually - of the population. But, the people they use have not been screened for thyroid problems. So, they could be hypo or they could be hyper, which means that the ranges are far too wide and do include both hypo and mildly hyper results. So, it's where your result falls within the range that is important, not the number itself.
Now, you haven't given us the actual numbers: results, ranges, size of dose - so we don't know where it falls. But, imagine it does fall exactly mid-range. That might be mistaken for being euthyroid, if you just take the FT4 result in isolation. But, you can't do that. You have to look at the TSH - and, preferably, the FT3 as well - and see how the two/three fit together. Say you have a TSH of 10, and an FT4 mid-range. What that means is that the pituitary is having to work extra hard, to stimulate the thyroid, just to get that result. And that is not euthyroid. It is hypo. So, you needed the levo to raise your FT4, so that the pituitary would not need to release so much TSH. And, you should continue increasing the dose of levo until the TSH falls back to about 1 or under, and the FT4 and FT3 are in a place that makes you well.
So, your doctor was very wrong to say you didn't need it. You do. And you also need to get a copy of your blood test results, with the ranges, every time you have a blood test, and learn to understand them (we can help you with that). Because, I'm afraid, doctors often are wrong where thyroid is concerned. They just haven't had the education to know much about it. Which is why forums like this exist to help people with doctors like yours.
Thanks for this and everyone for your replies. This sadly wasn’t my normal dr who is the one who first prescribed me, I have my full blood work (always do this) and she said that my FT4 is 15.8. Looking at the sheet this is definitely at the lower end.
I think what this has done is show me I also know nothing about this and just readily accepted whatever when it was mentioned, in the hopes I might feel better.
I’m on the 50mg produced by TEVA. And I did not take it today and have taken the strong antihistamine. The itching isn’t great but is better for sure. To be honest I was so desperate after 5 days of the itching I was happy to accept anything! I shall be booking a review next week, hopefully with my normal dr, and will discuss all of this. By mid week I am hoping that if it were the Tiva causing the itching then I will have seen a significant improvement - or that is what this dr suggested. But who knows!!
I haven’t had FT3 or antibodies tested. But my blood work from 3 weeks ago when I was put on the TEVA did include vitamin d, folate, ferritin and b12. All were in the “normal” range but folate was very low within it and b12 wasn’t great, despite me taking a decent multivitamin and iron (my ferritin is low too but actually fairly good for me - I frequently struggle with this unless I am in hardcore iron supplements for 6 months).
It feels like what the dr presented as a “shall we try you out on this” has thrown me down a rabbit hole!!
Thanks again all - I’ll report back after I get my head around it and follow up with the dr x
More likely because you're taking a multivitamin. They are very bad things to take, for many reasons. But if it contains iron - which most of them do - you won't have absrobed any of the vitamins because iron blocks them. Also, if it contains iodine, it could be making you worse. How long have you been taking it?
hi, I don’t take iron (which is on prescription) with anything else. My multivitamin is thankfully a good one which seems to helps me - bloods tests show. Although I know a lot can be a waste of time and harm absorption of other things. Despite having a very healthy diet I always struggle to keep levels above the lower end of normal. This one I’ve been on for a few months (the MV that is).
Today I’ve been intermittently coming out in red spots on my arms and legs so I think whatever this is caused by has really hit my allergic response. Dr again next week for sure and going to request another thyroid tablet rather than just stopping altogether - thanks to the insight from this group.
Your nutrient levels are probably low because your stomach acid is low - another hypo symptom - making it difficult for you to digest food and absorb nutirents. It's not about how healthy your diet is, it's about how much you can absorb. And, as a general rule, hypos can't absorb much.
but it’s interesting you say about low acid. For ages my dr kept saying it was the opposite and i very much felt it was different. As if I did drink (minimally) or have something acidic I actually felt better. No idea if it works like this but that is how I felt.
This also makes sense I went on PPI I became anaemia and had horrendously low levels of vitamins. They are known to limit absorption but when you combine it with me having a hard time doing that anyway…
This is so familiar, my gp suggested the same but a small glass of water with a dribble of cider vinegar actually helps! Interestingly whenever I had a gastro bug as a child/teen I would always crave acidic juices. Betaine with pepsin has been a game changer for meals I can't digest too.
yes same - I really realised when I started with apple cider vinegar too! Now I take a pro biotic every day and things have calmed somewhat thankfully.
hi all - thought I would do a quick update on here!
I ended up having to see a private dermatologist as was still suffering even two weeks after coming off levothyroxin. My dr did so many bloods and nothing showing up particularly apart from the TSH still being high (although lower than where it was).
I’m apparently suffering from urticaria - which they think was triggered by the change in thyroid and made worse by a virus. I’m back on levothyroxin (accord now not Teva). Have to take strong antihistamine twice a day for 6 months - they are hoping to reset the behaviour of the mast cells.
Thank you so much for all the amazing responses on here. It really helped me when it came to reviewing with my dr and then the dermatologist!
1.1.1 Offer serological testing for coeliac disease to:
people with any of the following:
persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue
unexpected weight loss
severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac disease.
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 over 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 and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and 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.
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