Acquired sensitisation to NDT

[Alanna012]

Sigh....so I am fast approaching a place where I cannot tolerate any meds. I always pick the lucky straws, yay!

As well as Accord Levothyroxine, Teva and all glandulars, I am now having serious allergic anaphylactic type reactions taking Thyroid S. Having a reaction to NP thyroid as well. I'm too afraid to go back to trying Armour or Erfa (I have them all) just in case I become sensitised to those too and have no options left.

What happens if a person just will not tolerate any medication? What options are there?

I decided to just get through the Thyroid S bottle as I thought it was weak. Turns out it's not so bad, but I am really struggling with this reaction. Every time I start getting somewhere with this illness, I take a huge step back.

[222222Kc]

Sorry your feeling this way. I've not heard of this myself. What is your doctor saying x

[Alanna012 in reply to 222222Kc]

My doctor has no idea that I take NDT. I stopped taking my Levothyroxine prescription earlier this year as was finding it very difficult to get a brand that I didn't react to and despite several appointments no one seems particularly bothered to check.

I've always had reactions to all thyroid medication. Including T3, but they were for several years fairly manageable. Mild. A bit of cetirizine or Loratadine along with the meds or beforehand and the odd fexofenadine and I was ok or so I thought. Looking back I remember other symptoms and difficulty getting well on them, I am requestioning how much I tolerated them.

But about 3 years ago I started to develop chronic urticaria symptoms that would escalate and get to the point of requiring steroids and I still didn't put two and two together as I felt it must be something else and I am allergic to other things so that confused me for ages.

Then I was taking Accord Levothyroxine + Tiromel combo and had a serious reaction requiring A&E and it went on and on. But I had taken Accord for some time years before with almost no issues, so I didn't suspect the medicine. I was doing very well on this combo. The way I eventually found out (well over a year later) it was the Accord I was intolerant to, was ironically, because I had to come off it for the fasting blood test and didn't immediately jump back on it and when I did, I had the mother of all reactions. So although I kept on trying I was forced to drop it and returned to trusty Teva.

Ok things calmed down on Teva initially ( but I wasn't doing well) and then gradually started to get escalating reactions to that too. So I contacted GP and said look, I may well have chronic urticaria but I am overreacting to Levothyroxine. So he prescribed liquid Levothyroxine.

I tolerated the liquid levo okish but still needed fexofenadine but GP said you can not get liquid levo again and the fact you still reacted shows it's not the excipients. I got referred to Allergy clinic in this time but their position is it's still idiopathic spontaneous urticaria and I haven't received much advice despite seeking private advice.

I switched to Bitiron and this was ok but I would still get face flushing, itchiness and angioedema but 3 or so fexofenadine made this ok. But I was sweating so badly in the summer and August I dropped it for the Thyroid S which was mostly to get through it and use it up.

Now after taking for a few months, last week within half an hour of taking it I felt my tongue burning and then it just resulted in me not being able to breathe and covered in hives. I don't give up easily, but the reaction starts within half an hour or two hours after taking.

After thinking deeply about all the issues I have had even with monotherapy, I think it's not the meds themselves, it's not the excipients. It's just my body or stomach (I have a lot of pain there atm) starts to sensitise and then won't tolerate it. It has also happened even with the Fexofenadine and certain antibiotics. I was taking a certain brand of fexofenadine. Now I can't tolerate it. I switched to another one, and now I have to change it again.

I'm just sensitising to each medication.

[GreenTealSeal_]

I’m in a similar boat although haven’t tried NDT yet. My reaction is so severe my eyes lid and face puff, my eyes are red raw itchy and I’m constantly sneezing and snotty- it’s embarrassing and only gets worse with an increase in dose.

I don’t have the answers but it is possible.

I’ve read a study that Levo in particular increases histamine which can be an issue.

I am only sub clinical but I feel that any type of thyroid med overwhelms my system and gives me this aggressive histamine reaction.

Histamine also impacts t4-t3 conversion so it’s a real catch 22 situation as I feel rubbish without medication but actually things are severely worse on it.

I also being sent off for allergy testing but doubtful it will show anything….

I’m currently unable to take any medication at all and medics are baffled.

[Alanna012 in reply to GreenTealSeal_]

I’ve read a study that Levo in particular increases histamine which can be an issue.

Ahhhhhh I never knew this! Makes more sense now.

Histamine also impacts t4-t3 conversion so it’s a real catch 22 situation as I feel rubbish without medication but actually things are severely worse on it.

This! This the real horrible situation I'm in. Sorry you're in it too, how absolutely rubbish. Yes you're damned if you do and damned if you don't!!

I already take Dao which is a supplement you can take - you take it before food to help break down histamine. You can buy it from Amazon

But I'm not feeling the benefits. I also take quercetin with Bromelain, it's all alright, but not too effective when things are at epic levels of reaction. So sorry about your severe reactions.

They'll probably give you an increased antihistamine at the allergy clinic or switch you to liquid levo but as you say, it doesn't tackle the issue. Please let me know if they suggest anything different

I really, really appreciate your response as I felt quite alone with it today thanks xx

[GreenTealSeal_ in reply to Alanna012]

I’ve tried DAO too but not noticed any difference yet…plus they’re so expensive!

Are you subclinical also? My Tsh is raised at 7-8 but my free levels are usually around 50% so I can sorta manage.

I’ll let you know what they say and almost certainly post here. I do worry though as I have already trialled liquid levo and if anything the reaction is more volatile. I get hives and itchy red patches after taking it

I have some quercetin to try.

What’s bromelain?

Weirdly when I took 75mcg levo I felt awful with allergy issues and also ragin joint pain, congestion….when I stopped it I felt pretty well/normal for a week or so and then hypo symptoms crept back in. Almost like the histamine issues calmed and I actually had the benefit of the thyroid medication for a few days without the inflammatory response of taking it daily, if that makes sense?

Another member also mentioned MCAS which rings some bells so going to look into this more too!

[Jazzw]

I was just about to mention Mast Cell Activation Syndrome.

I’ll throw in another idea as well—you may as well explore some rabbit holes! There’s a link between MCAS and Lyme Disease. Is it possible you could have had a tick bite at some point? Also a link between MCAS and mold exposure…