Hi all, first time posting a question but I've been reading and researching on this forum since January and want to first off say how much I've appreciated it and the people who take time out to provide thoughts/ideas and share knowledge, or ask questions from which we all learn. It has been an incredible resource to find.
My question: Recently started on a small dose of T3 (started at 2.5 mcg for two weeks, then went up to 5 mcg) due to persistently low T3 levels and a plethora of ongoing and progressively worsening symptoms, but I've been getting hives from every formulation I've tried. I went through this in 2010/2011 when I first got on exogenous hormone and had tried various brands and combinations of T3 and T4, but after several months of rashes (and not really knowing or understanding much of anything about hypothyroidism or Hashimoto's), I had just given up and stuck to levo, which I have been on since then. I was hoping the experience with T3 would be different this time but it has not been. I have even tried compounded T3 from two different pharmacies (most recently containing nothing but liothyronine sodium, the vegetable capsule, and microcrystalline cellulose - the latter two of which are in many supplements I take), and still got hives. Ditto with NDT, which I assume has a natural form of triiodothyronine vs liothyronine sodium. So although I've been told it is impossible to be allergic to T3 itself, that seems to be the case? If anyone has any thoughts about this or has heard of or experienced an allergy to T3, I'd much appreciate the input. Particularly any thoughts on what options there might be for needed exogenous T3 in such cases.
It seems to me that my last option is try to Thybon Henning T3 from Germany, which is the only other form of T3 (liothyronine hydrochloride) I have heard of, thanks to this forum. I don't have high hopes considering the reaction to NDT, but am still hoping to give it a shot, and have gotten a prescription from my endo for it. However, it seems that three German pharmacies listed on thyroiduk that dispense Thybon Henning will not dispense to the U.S. Does anyone have or know of a way of getting Thybon Henning in the States? I'm willing to try anything I can at this point to get a form of T3 I am not allergic to, as I have a lot of hope that T3 has been the missing puzzle piece for me. I can also create a separate post for this question.
For context, in my lifetime I have only ever gotten hives from two things - a particular pesticide (only twice in my life), and T3 pills. So to have hives at all is extremely unusual for me.
Again, any input is much appreciated. Thank you.
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Successful oral desensitization to levothyroxine. Report of one case
ABSTRACT
We report a 39-year-old female who underwent a total thyroidectomy as treatment for a thyroid papillary cancer. She suffered several episodes of mild angioedema in lips and tongue, after using different commercial Levothyroxine formulations, with and without excipients. Given the need to use this drug, the patient was admitted in our hospital and we proceeded to desensitize her with oral Levothyroxine. The patient fasted throughout the whole procedure, was properly monitored and had an adequate peripheral venous access. On the first day of the procedure, a 15-step protocol was performed, first administering placebo and then, compounded formulations of Levothyroxine starting from 0.01 ug, followed by doubling doses every 15 minutes until the cumulative dose of 111.95 ug was completed, corresponding to the daily dose of Levothyroxine her endocrinologist prescribed (112 ug). The patient was monitored at baseline, between each dose and up to 3 hours after the procedure was completed. There were no incidents such as urticaria, angioedema, or others. On the second day, the patient received a single-full dose of 112 ug on an empty stomach. The medication was successfully tolerated and she was discharged. Thereafter, she tolerates daily Levothyroxine.
Key words: Drug Hypersensitivity; Hypersensitivity; Thyroxine
There are a few other papers but, so far, I have not found any which are accessible (without charge). This link below is a simple search - you can have a look through and see if anything else looks interesting:
thank you so much helvella! i had actually been thinking about asking my allergist about the possibility of something like this, as that’s the same idea as as allergy shots/immunotherapy for seasonal allergies (which i was planning on starting for nasal congestion and oral allergy syndrome once stable on t3) but it just sounded like such a crazy idea for mainstream medicine that i dismissed it. this paper is so helpful and gives me a bit more hope. ive started and will continue to look through the link of articles as well, thank you so much for looking into that to try to help.
You mentioned other supplements. Any changes there? A long shot, but my first though as many of my supplements give me hives. It’s a long tiring process figuring which one is the problem. Best of luck to you.
thanks for the reply. nope, no changes to supplements or anything else. i’ve been through enough trials with starting and stopping various t3 pills that i’m 100% sure it’s those pills, unfortunately.
Thyrogold- a thyroid medication made from the thyroid of cows. It’s non prescription and may be purchased on the internet.
Having a compounding chemist make capsules of only powdered natural desiccated pig thyroid which should be available from commercial pharmaceutical companies. No fillers are added to the capsules.
thank you for the ideas. i had looked into thyrogold but was wary of it as it only comes in two doses and without clear indication of how much t4 and t3 is in each, and it is not standardized under/regulated by the FDA. however, as the only NDT i tried contained porcine thyroid, it would be worth trying bovine thyroid as another option! I will look into that more, thank you.
i do already know I react to porcine t3 (not the fillers) so i don’t think a more pure form would be of much help. in fact, i had an even stronger reaction to the more pure form of compounded liothyronine than i did the pharma versions - i assume because it hits all at once whereas fillers slow down the release.
I know of several people taking thyrogold who are doing well in it. They started on 150 and moved to 300 if they were symptomatic.
Correct, it is not controlled by the fda or any regulatory agency. Even with regulation in place, look at what is happening with np thyroid and naturethoid. Changes in formulation occurs without notice, to the detriment of people who depend on thyroid medication to function normally.
update for any others having this issue: i visited an allergist and it turns out i don't have a true allergy to t3 - she stated that if i did, ingestion would have caused a systemic allergic response such as anaphylaxis, not just hives and rashes. instead, she said this is sometimes seen in the context of autoimmunity (similar to the chronic hives some with hashis get, per some of the articles helvella linked to) and what i'm experiencing is an adverse reaction to taking the t3, which is activating an allergic response in my skin and causing hives. this is similar to an adverse reaction to any drug. however, there's no way to "desensitize" to it the way one can to things one is truly allergic to.
she also explained that cortisol, which is a steroid, mutes the response - which explains getting hives and rashes in the evenings and not much during the day - and that significant fluctuations in cortisol such as from stress can worsen the response.
for the most part, as i've stuck with taking t3 (though in various forms), the hives have been getting less severe, and she said adverse reactions like this do typically fade away completely over time. at this point it's annoying but bearable, so sticking with it and will wait for it to hopefully resolve on its own. i still don't quite understand why i'd be experiencing an adverse reaction to a hormone that is a normal part of human biology (and to almost nothing else in my life!), but i suppose that's just one more mystery of many when dealing with autoimmunity.
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