To cut a VERY long story short - diagnosed with underactive thyroid 20+ years ago and had no significant problems until about 3 years ago when I suddenly started developing bad allergic reactions to food, drink, shampoo’s ,cosmetics medications……. Some makes of Levothyroxine tablets made it considerably worse. Because of the pandemic I had wait ages for allergy testing at Guys and St Thomas’. In the meantime I got covid and was quite poorly and didn’t take my thyroxine for a few days. Apart from the covid symptoms, I didn’t have allergy symptoms!
It was a fight, but I finally convinced my Gp to prescribe liquid thyroxine because of this evidence. I was prescribed Ten Pharma and everything was going well until I went to renew my prescription and Ten Pharma was not available and was given Teva liquid thyroxine.
A while after I’d taken it my whole body started itching, eyes streaming , hives etc etc
Went to see the pharmacist so they could witness this. Was prescribed steroids by GP
Finally managed to get Ten Pharma- ok
Fast forward , can’t get hold off Ten Pharma was prescribed Zentiva liquid. Bad reaction again!
Spoke to GP yesterday, he is unsympathetic and basically said it is costing the practice a fortune and I may as well be on tablets as it my allergic reactions aren’t life threatening!!!!!!
I should get back in touch with Guys and St Thomas’ and would leave a prescription for 4 bottles of liquid thyroxine and it is up to me to source Ten Pharma
I phoned Guys pharmacy department for advice. Spoke to a really helpful guy who couldn’t understand why I was allergic to two brand and not Ten Pharma. I thought E217/219 is the problem. This morning I phoned Martindale to see whether they still do capsules, am awaiting her phone call, didn’t sound very hopeful though.
Sorry for such a long message, advice please
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Happydaystomorrow
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There's no need to feel bad about posting something that's bothering you.
The fact that you "Spoke to GP yesterday, he is unsympathetic and basically said it is costing the practice a fortune and I may as well be on tablets as it my allergic reactions aren’t life threatening!!!!!!
This GP is another who is unknowledgeable about symptoms that a patient can develop if the medication they're taking affects them badly, rather than helping to restore their health. It also sounds is if he has to pay personally for all of your medications.
If we all had plenty of money, we'd certainly not be searching the internet as we'd be paying for the top replacement hormones and the Endos/doctors will be jumping to the patients' attention to make sure of a patients' relief of symptoms and recovery and are symptom-free.
If we don't take thyroid hormones replacements, then our conditions might lead to 'life threatened'.
What a stressful time some members have, especially if the replacement thyroid hormones affect them badly and give them unpleasant symptoms.
The statement from your GP just goes to show that they cannot be bothered and are more interested in how much replacements costs rather than how the patient 'feels' on a particular dose.
I hope you can resolve the quandary as you've been struggling long enough.
Some pills and potions contain acacia, which causes allergy-type reactions in some people.
Other problem ingredients I have heard of are mannitol and lactose.
I've no doubt there may be other problem ingredients.
helvella (one of the administrators of the forum) has info on all the thyroid products prescribed in the UK. You can find all the documents he's written/created linked on his profile :
Martindale are now Ethypharm! (Nothing stays the same, except our general poor experiences.)
My medicines document is complete and up to date for the UK, but am currently updating it heavily for the rest of the world.
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.
Hello, haven’t had my thyroid levels checked in ages. Never had vitamin levels done! Doctor sent me a text message yesterday to say, as I was having problems with liquid thyroxine I should go onto tablets and take anti histamine!!!! I despair and despise him now. Unless you’re going through it nobody understands 😢
Thanks, had allergy tests done at Guys and ST Thomas’. All that you mentioned has come up. Still doesn’t help me. I am now on day 3 without thyroxine. Spoke to a lovely lady at Martindale labs who spoke to my pharmacist and said they could supply special order capsules. Now the problem is the fight I will have with my doctor to write a prescription for them!😡😢
Getting a months supply is a problem with my GP! After reading so many reviews/advice on here. What seems to be the brand that most people are “happy” with? My allergic reactions did seem to start around the time that lots of other people were having allergic reactions to accord/ activis.
I have problems with allergies and thyroid. I take cetirizine twice daily to keep at bay, then chlorphenamine if something gets going, and carry Epipens.
All seems linked to the autoimmune problems that have given me Ords and autoimmune diabetes.
It really is a problem getting to a good specialist, I was diagnosed after being taken I’ll in America, and despite my diabetes being caused by an autoimmune attack on my pancreas. the NHS insists I am Type 2, because it was late onset and doesn’t need insulin yet!
My sympathies go to you, and don’t let them pooh pooh the allergy, it is telling you something. Mine is ideopathic, ie no identifiable trigger.
Thanks Paul! It really is so frustrating and painful with the allergies I have. People, mainly my GP is so unsympathetic. I don’t want to be taking antihistamines all the time.
I have very similar problems to you. 8 years hypothyroid on levothyroxine doing not too bad then three years ago ended up in A & E with atrial fibrillation, high blood pressure and a mirad of other symptoms. long road to recovery and still feeling very ill some days. Discovered I was allergic to all brands of Levothyroxine tablets, after a long battle managed to get a prescription for oral solution and I was able to tolerate this and began to feel much better (zentiva brand) but still tired, GP increased dose 75mg but I had to change brands, now quite ill again. My illness also coincided with the change of Levothyroxine from activas to accord. I have also developed multiple food intolerances. I hope you manage to get your meds sorted as the brand can make such a difference to feeling well or very ill.
I have since developed so many allergies to things. Eventually got tested, 163 patches properly at Guys and St Thomas’. Came back with loads. So so fed up! Waiting to hear from my pharmacy if they can get hold of Glenmark. I even phoned them directly and they said they will get back to me. Day 5 without any thyroxine!!
UPDATE GLENMARK Yesterday I had a phone call from someone “high up” in Glenmark and he told me that it should be readily available through Phoenix , a distributor. I told my pharmacy this and she diligently phoned them and was told they didn’t have any!!!! I then phoned the man back from Glenmark who said he would speak again to his sales manager and get him to phone me. This was at 6 o’ clock Friday evening so Phoenix and Glenmark both closed.
Now day 6 without thyroxine, starting to feel it now. Having my bloods done tomorrow. Is there any point if I haven’t had thyroxine for 6 days?
"Now day 6 without thyroxine, starting to feel it now. Having my bloods done tomorrow. Is there any point if I haven’t had thyroxine for 6 days?"
There is not much point testing after 6 days without any thyroxine.
Your TSH could have risen quite a lot after 6 days off ( or it might not , but there's no way to know for sure , everyone is different)..... and your fT4 will definitely be quite a lot lower.
I had about 10 days off once and my TSH came back at over 7, when it was usually 0.05
To get a true TSH reading , you need to be on the same dose for about 6 weeks.
fT4 Tests need at least a couple of weeks on a stable dose , before they will show the new level ... but that level may change again over the next few weeks as the TSH level a changes. (TSH usually takes longer to move than fT4)
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