I’ve been pretty rubbish with compliance of my levothyroxine up until 12 months ago when I made a concerted effort to take every day. Since then I have had significant health problems but normal TSH and free T4. My symptoms have been allergic in nature with angioedema of the airway, hives and joint pain, burning skin, diarrhoea, urinary incontinence and shortness of breath. Fragrance seems to trigger me the most along with many other variables. I have been reviewed by allergy clinic and told that they do it know what is causing my symptoms. I came here and read about mannitol in the medications section so whilst awaiting my next doctors appointment I have stopped taking my thyroxine one strength doesn’t contain mannitol but the other does. I am 5 days into being off thyroxine and I’ve been able to stop my massive doses of fexofenadine (360mg twice a day) and my skin feels so much better. I can now tolerate fragrance without my airway swelling and becoming short of breath. Has anyone else experienced such a reaction with mannitol as an excipient?
Mannitol: I’ve been pretty rubbish with... - Thyroid UK
Mannitol
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
There is a phenominon whereby stopping Levo helps symptoms, however this is usually short lived (think weeks or months) and in time you will be feeling much worse off as the hypo symptoms catch up with you.
If you suspect that mannitol in Levo is causing you symptoms then it would be preferable to switch the brand of Levo you take to one with different excipients.
Allergies can sometimes be linked to being hypo. Look up histamine intolerance, also mast cell activation syndrome or MCAS for short. Not all doctors believe in MCAS though.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Did you do the test as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
hi
Thanks for the very informative post. I’ve had all the above mentioned tests all normal [redacted by admin] plus ANA, c1,c3&c4 all normal again. Ige for common foods negative. RAST test mildly positive for dust,grass and tree pollen.
I was diagnosed hypo almost 30 years ago other than the 3 or 4 years preceding my year of being fully compliant again I was very good at taking my levo and my gp been very good at treating symptoms not numbers.
I’m aware of MCAS and that it’s not a forth coming diagnosis in the UK but after many an hour reading I don’t think I’m as complex as that. Also noted that the brand of fexofenadine I have currently contains mannitol and hasn’t helped symptoms the way one would have expected it to at such high doses.
Suggest you get GP to write a named brand that doesnt contain mannitol on your prescription. See image, it needs to be written in the first line.
What dose of Levo were you taking?
Exactly what were your vitamin results with their reference ranges?
Have you looked into histamine intolerance? Its not uncommon in hypo people.
I have tried Fexofenadine a number of times for allergies from itching to post nasal drip, I get allergic rhinitis. I dont rate it either, even though its meant to be the newest generation of antihistamine. Its the go to one that GP's always prescribe. Personally I get on better with Certrizine, which is very cheap and does the job.
I tried Mercury Pharma Levo, It was my second brand and it caused me a lot of itching. I have Ehlers Danlos and med sensitivity and allergies often go hand in hand with that condition, its worth trying a different brand of Levo or if none of the tablet ones suit you could ask about liquid Levo but its very expensive so your GP might well be reluctant to prescribe it.
Was it the Teva brand you tried? Teva is one of those brands people either love or hate and it seems that mannitol is the culprit. However it is lactose free so some people like it if they can't tolerate lactose. Vencamil is another lactose free brand, without mannitol.
it is the Teva brand with the mannitol I have accord for my higher dose which doesn’t have mannitol in. I have also read a case study all be quite dated that is like reading about myself with regards to going through 3 brands before no reactions with the overall assumption being excipients being the cause.
I was planning a 3 week holiday from them and then adding back in the one without mannitol.
I urge everyone to put in Yellow Card reports if they have issues with any medicine. (If you are not in the UK, follow the procedures for wherever you are.)
These reports are our ONLY way of putting in ‘negative reviews’!
This is a general post which explains a bit more.
🟨 Making Yellow Card Reports 🟨
Excipients can cause a lot of issues. I take Accord as a named brand and have had no problems on it.
thanks I have it on my agenda to do if I stay symptom free. After a year of awful symptoms and a day in resus if it does look like it’s the brand I’ll be filling the form in.
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