endo says maybe allergic to all thyroid meds?? what do I do?! any advice??

[Olsbird]

so I saw Endo number 4 late last week who (like the other 3 endos before him ) had no idea why I cant tolerate levothyroxine (any brand, including liquid), NDT or Liothyronine in anything other than the smallest quantity and, even then, I suffer side effects on the smallest dose (and I mean like 12.5 mcg levo every other day, 1/4 tablet NDT every other day). Side effects read like the leaflet in the drugs - pressure headaches, lightness in my arms, tight chest and feel like I cant breathe, lump in my throat/tight throat... I feel terrible, cant think straight..... I think for lack of anything else to say he queried whether I was allergic to thyroxine. Im not sure he believed I was allergic but couldnt think of anything else to say! Ive been ringing around trying to get an immunology appointment but even in a private clinic there was a 10 week wait - god only knows how long the wait is in the NHS. Im really worried - I have been struggling this now for 5 years and am just going in circles. If hes right and I am allergic then I just don't understand how I can rectify the allergy so I can take the drugs. he did do some blood tests (I haven't got the results yet) but Ive been in and out of the GPs surgery for years moaning about how ill these drugs make me and every time I moan, I give litres of blood for tests but the only thing that ever comes back as wrong is my thyroid levels - Im always showing as undermedicated (even when I have the symptoms of being overmedicated). When I get that tightness in my throat and I cant breathe it is absolutely terrifying. btw I have tested negative for celiac and addisons disease. anyone aware of any reason (other than allergy or addisons) which could be causing me not to tolerate any of these drugs? thanks for any help

[helvella Administrator Thyroid UK]

You just might find a recent post of mine to be of some interest:

healthunlocked.com/thyroidu...

(Not suggesting that you would either get the option, nor that it would work if you did.)

[Olsbird in reply to helvella]

thanks Helvella. The gastroenterologist didn't think I had stomach issues causing the problem. though he came to that conclusion through our conversation rather than from seeing any evidence via a camera!

[Angel20]

Are they 100 per cent sure you have a thyroid issue ! Blood tests do not always tell the real problem

[Olsbird in reply to Angel20]

Well my T4 and TSH were definitely in the underactive range when I first tested 5 years ago and I do have the symptoms of underactive. and every blood test Ive had since they have only been in range once - that was on 2 grains of NDT but a day after the blood test I started to react and had to reduce down and down till gradually 1/4 grain every other day. I can tolerate a little for so long then its like it builds up and I start to be really ill with the symptoms of overactive even though my bloods are always saying Im underactive. I understand why all the endos are confused but it doesn't really help me!

[Angel20 in reply to Olsbird]

What are you taking right now

[Olsbird in reply to Angel20]

Im not really taking anything. after 3 weeks of taking 12.5 mcg tablet levo every other day, I hit the overdose wall. I didn't take anything at all for 5 weeks. then I took the equivalent of 2.5mcg levo (liquid thyroxine) Sunday, Tuesday and 1 mcg Thursday and OMG hit the wall again - throat tight, couldn't breathe, feeling awful. haven't taken anything since last Thursday and today has been the first day Ive not felt awful sideeffects all day so I think its starting to wear off a little. I was taking 1/4 tablet NDT (Naturethroid) every other day for about 18 months but I wasn't really well on that - terribly constipated, heart palpitations, funny throat, dry skin, lethargic....

[Angel20 in reply to Olsbird]

Perhaps you should not take anything at all as it is making you feel a lot better as you say . Sometimes we need to wait and see. I have Graves Disease, I am not on medication I have been taking bugleweed the gold standard herb for hyperthyroidism and in actual fact it made my condition 10 times worse. I have stopped bugleweed completely feel much better.

Listen to your body and how you are feeling if your symptoms have subsided it is evident you must not take anti thyroid tablets and perhaps go deeper than that find out what is causing it by having a full blown medical examination with full or complete blood tests.

[Angel20 in reply to Olsbird]

NDT is derived from dried thyroid gland from pig and cow perhaps this is the reason also you are intolerant to NDT

[Jazzw]

Do you have trouble taking any other tablets? For example, paracetamol, aspirin, ibuprofen? Vitamin tablets? Do you have any after effects from taking anything other than thyroid hormone replacements?

This is a bit grasping at straws cos it must be awful for you.

I’m wondering if there is a common denominator somewhere. Not sure what that might be, but...

[Olsbird in reply to Jazzw]

thanks Jazzw. I was always sensitive to drugs - the lawful kind! whatever the dose was on the packet of paracetamol etc I would always halve as the 'normal' dose always felt too high. I don't seem to have problems with antibiotics (or maybe as you don't take them for as long… …) but generally I avoided drugs as much as possible for years before I got my thyroid problem. I avoid them even more now with all the nightmares Ive had!

[Jazzw]

How soon do the effects kick in after starting to take Levo/lio? For example, if you’ve had a bit of a break from trying to take it, does it happen on day one, immediately after taking the pill? Or does it take a few days?

Have you ever taken more than 50mcg Levo in one day?

[Olsbird in reply to Jazzw]

I have never taken more than 50mcg - that was the starter dose years ago and OMG I felt so ill I took myself to casualty as I thought I was dying! usually I can tolerate a 'new' drug for a few weeks (so moving from 1/4 tablet NDT to 12.5mcg levo) but then I hit the overdose wall. I then stay off drugs for weeks so theyre out of my system before I try something else as if I try to take any amount, however small, I go right back into overdose mode. when I take levo I can feel it - I don't want to refer to it as a high as that suggests pleasure but I can feel it taking effect.

[Jazzw in reply to Olsbird]

So the effect of taking levothyroxine is immediate? Within a few hours?

[Olsbird in reply to Jazzw]

I can feel it quicker than that. within minutes I can feel it.

[Jazzw in reply to Olsbird]

That does sound like an allergic reaction. I wonder what it is. I think it’s quite unlikely to be the T4 itself—it must be something that’s packaged with it.

See my replies a bit further down...

[birkie]

Hi Olsbird

I'm in the same boat had total TT in May last year.. I couldn't take the anti thiyroid meds I was really ill on them they inflamed my gut and stomach. I can't take aspirin, inflammatory drugs, HRT, the pill, I have reactive colitis so I'm not good on synthetic drugs been on levo since May last year when I was on 125gm my gastric symptoms were really bad and I had hyper symptoms which my surgeon noticed so reduced me down to 100gm again no improvment I was still hyper with server headaches and gut problems put down to 75mg same put down to 50gm and I'm still struggling with gut headaches, and hyper symptoms also bad pain in bones muscles. My endo said its not the levo causing the problem he was the endo who said the anti thiyroid meds couldn't cause gut problems but they did my gut and stomach were serverely inflamed I was vomiting and went in to thyroid storm.. My bloods are awful and my endos only advice is to increase my levo given as I'm struggling on 50mg I'm worried about increasing because I was bad on higher levels so I know how you feel my endo refuses to believe levo can affect you it's so frustrating and I need these hormones to function... Hop you can get some advice I'm going back to a new gp in my surgery to get answers

Good luck❤️

[Olsbird in reply to birkie]

thanks - let me know how you get on. It sounds like you are going in the same circles as me - no one believed for years I could be allergic and now theyre questioning that and the GP thinks I may have stomach issues but the gastro says not (without any camera or tests). my GP is absolutely fantastic but I think im just beyond him and the specialists are not really helping him. btw, I don't think any Endo would ever tell you to take more levo than you can tolerate if they had a thyroid problem themselves and personal experience of just how ill you feel when you are over medicated!!

[birkie in reply to Olsbird]

Hi Olsbird

Just to let you know I had to get out of my hospital bed to see my endo a few miles away as he would not come to me when I was in hospital recovering from thyroid storm this was an appointment because I could not keep the anti thiyroid meds down as I said they inflamed my stomach and bowels when I saw him he told me under no circumstances would the anti thiyroid meds carbimazol /ptu affect my gut I told him it did as I'd been of the meds for 9 days and my stomach and bowel pain and imflamation were improving he again said no it must be something else.. I think you may have lymphoma 😲 I nearly fell of the chair the scan I had done in hospital showed server inflammation in the stomach and small and large intestine nothing about lymphoma he actually wrote it down as the cause of my gut problem I came away from that app scared stiff.. I spoke to my doctor on the ward a lovely man he came in and I relayed the lymphoma diagnosis to him.. He had already received it from my endo by e-mail he told me he had a server talk with him as he could not diagnose a patient with something like that without a bowl scan he arranged for me to have another scan in 3 weeks which by that time my stomach and bowles were OK I did not take the anti thiyroid meds again as the person doing the scan saw my last scan in hospital and my scan he was doing and diagnosed server reaction to the anti thiyroid meds( 🖕to the endo) and not to take them he sent the findings to my endo I got no response bk.. Same here with the levo if he thinks I'm ending up back in hospital because of his incompetence his mistaken 😠😠😠😠

[Olsbird in reply to birkie]

jeez. that's terrible. they are always trying to fit square pegs into round holes - they don't seem to have any ability to think outside of the box. sigh.

[AuntieMandy]

I’m sure this is a RIDICULOUS stab in the dark, but sometimes those are the things that lead to other ideas!

Could it be a ‘filler’ you are allergic to and reacting to? It might be something that they add standardly to lots of meds? Just a thought. Good luck. Xxx

[Olsbird in reply to AuntieMandy]

thanks but I don't think so as liquid thyroxine has no fillers and ive tried lots of different brands and react the same way with all of them. the only real common denominator is T4 as far as I can see. thanks anyway.

[Jazzw in reply to Olsbird]

Actually, liquid thyroxine does have other things added to it. I don’t know which brand you tried but the two kinds I just looked up both had other stuff added.

medicines.org.uk/emc/produc...

and

medicines.org.uk/emc/produc...

Both have parabens in, one of them had propylene glycol (antifreeze!).

The word you’re looking for when it comes to “added stuff” is excipients.

I’m not sure it’s actually possible to get a drug that would just be the active drug plus water. Most things need preservatives, solvents or emulsifiers added to them. So, it could still be a question of finding the right brand for you.

When you tried NDT, which one did you try?

Maybe you should ask your doctor to refer you to an allergy clinic to see if they can get to the bottom of exactly what it is you’re reacting to. If you search HealthUnlocked for “allergic to levothyroxine” you’ll find more than a few people who have struggled just like you.

Here’s just one of the posts I found: healthunlocked.com/thyroidu...

It isn’t as uncommon as your doctor might think! But she/he shouldn’t be leaving you to it—it’s really important that you get some help to find a thyroxine replacement you can take.

[Olsbird in reply to Jazzw]

I tried Naturethroid and Armour NDT. Didn't really get on with either. Levo - I have tried several brands - one in a gold/red packet whose name I cant remember, Mercury Pharma and Activis. I only tried one type of liothyronine but I cant remember the brand.

[Jazzw in reply to Olsbird]

Also—have you seen this Thyroid U.K. document? It lists many many different brands and their ingredients.

thyroiduk.org.uk/tuk/treatm...

Roseway Labs looks interesting—they seem to be able to make up liquid thyroid replacements that don’t have dodgy ingredients.

[Algic]

I'm allergic to acacia which some brands are using as fillers. I couldn't understand why my normally well controlled asthma was getting worse and ended up in hospital with severe asthma attack. Asthma uk sent out an alert which I read a week later warning people to change brands if they saw a change in their asthma or had an attack. A&E Dr thought it was allergic reaction too . This alert provably saved my life.

[asidist]

Hi Olsbird, I just came across this post in doing a search and was wondering how you are doing and if you've found any sort of solution.

[Olsbird in reply to asidist]

hi sorry for the delay. No I havent resolved anything, I started on Eltroxin brand - half a 25 mcg tablet every other day. Was feeling great until week 3 (again! seems something special with week 3!) when chest starts getting tight and I cant breathe. stopped it for a few days and just tried half a tablet again today. Immunology think I may have a sensitivity to something but dont really know what and meantime suggested I just try different brands. Feel like Goldilocks and the porridge!! Do you have similar problem? did you resolve it?

[asidist]

Hi there no worries. I’m sorry you’ve been dealing with this for so long! It’s been almost a year for me and I feel like I’m reaching the end of my rope, never thought this would go on so long. Can’t imagine dealing with it for years.

Based on some of the other posts in this thread I was wondering if you’ve ever isolated the problem with certainty - it sounds like the liquid liothyronine you tried may have had a variety of other ingredients in it. Have you ever tried compounded levothyroxine or liothyronine (preferably both)? Compounding pharmacies can make pills using only the hormone and one other very common ingredient - typically i believe microcrystalline cellulose or methylcellulose (which are widely used in supplements and other medicines) in a gelatin or vegetable capsule. They can also substitute the cellulose with sugar or lactose or even rice flour. If you regularly take and have no issue with other supplements /medicines/foods that have microcrystalline/methyl-cellulose (or the substituted filler of your choice) or that come in the same capsule type, but are still reacting to the compounded medicine, that’ll give you a definitive answer as to whether or not it’s the hormone causing the problem. The reason I think that might be especially helpful for you is because you mentioned that you have trouble tolerating other medicines as well, which makes it sound like there’s some possibility it could be something other than a thyroid hormone allergy. The compounded pills would help you know for sure.

I have a hypersensitivity/allergy to T3 though my symptoms are different than yours (severe hives/itching/skin irritation, puffy face, some tightening of the throat but no trouble breathing) and have tried various ways of overcoming it without success thus far - I’m going to write more about this in a post soon but I’ve tried desensitizations (thanks to helvella for bringing that possibility to my attention) with some success - symptoms are reduced for 1-2 weeks - but no full or lasting resolution. I’m not sure why it doesn’t completely get rid of the hives or last but I’m now looking for an allergist or researcher with more knowledge around these types of issues to help me, since it’s such a rare allergy that most typical allergists seem to have no clue about it. If you determine it’s a true allergy I would definitely try doing a desensitization if I were you, since you seem to be having a type of allergic reaction that may be better affected by it than mine has been. Happy to forward you resources regarding thyroid hormone /general hormone desensitization if helpful if you want to PM me your email.

I actually have an appointment with a new allergist on monday - not anyone with specialized experience in this unfort but just kind of a shot in the dark with a well-rated and more experienced allergist within my insurance network - and I’m hoping he might have at least some thoughts that can help move me forward.

Pls keep me updated on how you do!

[Olsbird in reply to asidist]

Thanks for the info. Im currently trialling Eltroxin brand, 25mcg tablets, which I have taken half every other day. So far (a month) Ive coped well with them. Ive just increased to taking half for two days, none for one day, and will do that for a further month before increasing again if I need to to half every day. Its a tediously slow process but I am SOOOOO nervous about getting ill again as it really does make me feel unwell. If I cant tolerate the higher doses then I will pursue further with the immunlogist but tbh they dont really have a clue - or at least the ones Ive spoken to so far. Dont get me wrong they are very well intentioned but ultimately not very helpful as they just say try loads of bransd and see if you can find one that you can tolerate!! Good luck to you and please do let me know if you resolve your issue!