Histamine

[GreenTealSeal_]

Hi,

Not sure if anyone remembers me...I rather foolishly deleted my account the other week after feeling really fed up/miserable and like I was endlessly being a grumpy bother here.

Anyway, before I went off in a strop, a user here mentioned histamine (i think TiggerMe, thank you!)and I've been doing a bit of a deep dive on it and wonder if you're onto something.

Can levo cause an increase in histamine?

I've recently restarted levo (liquid version) and find within an hour or so of taking it my face and eyelids are puffy and swollen. I am embarrassingly snotty, congested and can't stop sneezing (basically exactly like when I get hay fever!) this has been happening every time I take levo since last year but I hadn't made the connection...until I was told about histamine. I'm not sure that diet is an issue as things seem ok after eating but since making the connection I can time when the reaction will begin after taking levo!

Does anyone else struggle with a huge histamine spike after taking levo??

How did you get rid of it!? (Mine is so bad that my phone won't recognise my face lol) Anti histamines aren't touching it.

Any supplements that can help or just any info at all? (its alot to get my head around)

Thank you

GTS

I'm actually wondering if almost all the issues I have when taking levo are caused by histamine...

[TiggerMe Ambassador]

Welcome back 🤗

I did put up a post saying 'what happened to GTS' as I thought I must have missed something!

Yes, we were chatting about histamine and it certainly sounds like that could be your issue, though mine is food related, yours sounds like it could be MCAS with such a regular flare up? I can't remember who pointed me in that direction but mine isn't as severe if I swerve my trigger foods... I'd suggest having a rummage there and hopefully in the meantime someone will pick up on this thread

Edit...

Just looking back through my old posts to see if I can find who gave me pointers (think it was one of those wandering threads of my early days 🙃) and reminded myself that there is a connection between low zinc and histamine intolerance

[TiggerMe Ambassador in reply to TiggerMe]

Would help if I actually added that chat 😅... healthunlocked.com/thyroidu...

[GreenTealSeal_ in reply to TiggerMe]

Lol, thank you!

[GreenTealSeal_ in reply to TiggerMe]

Just having a read through and my brain has already combust cos I wonder if we're really onto something here!

....also I've been on the combined contraceptive pill for years (for other delightful hormone issues but that's a while other story!) and apparently this is known for depleting zinc!

[TiggerMe Ambassador in reply to GreenTealSeal_]

I managed to get my GP to test my zinc saying the Dentist had suggested it due to regular mouth ulcers... when the result came back as Low she just shrugged and said "I've never tested that before and haven't got a clue"! Finally a little honesty... referred me to the Nutritional Specialist who suggested eating Special K 🙄

[GreenTealSeal_ in reply to TiggerMe]

LOL, oh yes the answer to ALL women's problems...Special K😂

I actually have a mineral home blood test kit in the draw...which I think includes zinc!

[TiggerMe Ambassador in reply to GreenTealSeal_]

Perfect!

[GreenTealSeal_ in reply to TiggerMe]

Ah thank you! I'm sorry for swanning off mid-convo, I just had a complete melt down and was worried I was coming across shirty and rude. (which isn't me at all!)

Hmmmmm, yes I've been reading a little about MCAS. I'll try searching for posts and see what I can find.

It's weird cos I can't pinpoint particular foods that cause it...but maybe I need to pay more attention now.

It's odd that taking levo seems to send the 'reaction' from 0-100 within an hour. It then kinda calms throughout the day/night...just in time for my next levo dose and then the whole thing starts again!

[TiggerMe Ambassador in reply to GreenTealSeal_]

Hypo makes us a lot of things we aren't, it's a bl@@dy struggle to stay civil sometimes 🤭We all get it...

The thing about histamine is that your bucket gradually fills until all of a sudden that lovely smashed avocado on toast overfills the bucket and it's like you have been poisoned... but it isn't the avocado's fault necessarily on another day with a different build up there's no issue.... it's the combination of other foods/ drink you've eaten before and not processed.

MCAS search brings up some interesting threads

[GreenTealSeal_ in reply to TiggerMe]

Thank you for understanding!

Ah ok, so it seems like it's a tricky thing to track then.🤔

For me it seems like thyroid hormones themselves must send histamine through the roof!? Which is annoying. An hour after taking levo it starts and obvs I wouldn't have even started eating yet.

I found smoother suggestions of supplements to try here:thyroidpharmacist.com/artic...

but feel a bit worried to try things at random!

[TiggerMe Ambassador in reply to GreenTealSeal_]

🤗

I tried the DAO tablets but tbh just found it much easier and more effective to cut out the high histamine foods and my stomach is much happier and maybe the extra zinc is helping too... of course she does mention Candida have you been checked for that?

[GreenTealSeal_ in reply to TiggerMe]

No I haven't, is that a blood test?

I had a look at DAO tablets but they seem expensive too!

[TiggerMe Ambassador in reply to GreenTealSeal_]

I don't actually know 🤔 but the GP can test it... yes they are and it's another thing to remember to take 30mins before eating 😩

[GreenTealSeal_ in reply to TiggerMe]

Ah okay. I will summon the strength to ask them about it!

Yes, the less admin the better!

[Jamima]

Hi GreenTealSeal - welcome back. I too have suspected I have histamine issues and did some research on this a while ago. Before you go blaming the levo, it might be worth checking your oestrogen levels as particularly in peri, the huge upswing of oestrogen can trigger a histamine reaction, as can replacement oestrogen.

[GreenTealSeal_ in reply to Jamima]

Hi Jamima, Thank you!

I just find it so suspicious that the reaction 'starts' an hour after taking levo. When I don't take any levo at all I don't have these issues so there's defo a link there!

I'm 33 and on the contraceptive pill (I have some other hormone issues) but off the pill my estrogen is usually low normal range. I have PCOS and have never had a natural period so that's a fun puzzle piece to add into the mix.

[Jamima in reply to GreenTealSeal_]

Sounds like it's defo the levo then. I think coffee does it with me but not everyday which is odd, but there's NO WAY I'm stopping that!

[GreenTealSeal_ in reply to Jamima]

It's so annoying- without levo it clears completely in 48 hours or so!

HA I don't blame you. I have one in the morning and would be hard pushed to go without it!!

[RedApple in reply to GreenTealSeal_]

'the reaction 'starts' an hour after taking levo'

What is your current dose, and what brand? It could be caused by one or more of the excipients, or simply being on too low a dose. it's not uncommon.

[GreenTealSeal_ in reply to RedApple]

It occurs on any dose unfortunately and is worse the higher the dose so I don't think it stems from being on too low dose.

75mcg pushes my FT4 too high (details in my bio) so I'm currently taking 62.5 levo in liquid form (mercury I think), so less excipients but still the problem persists unfortunately.

The reaction completely disappears when levo is stopped completely so it's defo the levo causing it which is annoying. I had this issue all last year and then stopped levo for 3 months and it completely cleared...but I needed to restart and now the same thing is happening again unfortunately.

[RedApple in reply to GreenTealSeal_]

Have you had same reaction to levo tablets?

[GreenTealSeal_ in reply to RedApple]

Yes, all of last year when I was on 50-75mcg (teva, mercury, accord) it's taken me a long time to make the connection but stopping levo for so long and then restarting has defo confirmed the link!

[RedApple in reply to GreenTealSeal_]

'75mcg pushes my FT4 too high '

Test results in your bio show FT3: 4.7 (3.1 - 6.8) 43.2% as exactly the same on both doses. Is that correct?

[GreenTealSeal_ in reply to RedApple]

Yes that’s correct. The private dr I was seeing at the time thought that was weird too but couldn’t offer much of an explanation!

[RedApple in reply to GreenTealSeal_]

So, low FT3 could be a clue. Hormones need to balance. As you say 75mcg levo pushes FT4 too high, this might suggest you need a little T3 (liothyronone) added to the levo to bring FT3 up, but keep FT4 in range. Adding T3 just *might* be the clue to the histamine issue. Getting T3 prescribed isn't easy though. Has to be started by an endo. So GP referral required. Or pay for private endo.

[GreenTealSeal_ in reply to RedApple]

I have already tried this end of last year and it made matters significantly worse unfortunately. I have also tried t3 mono this is worse still.

Tbh i had v low iron last year so hoping now that nearly optimal I will convert better. I also read histamine issues can impair conversion too🤔 so maybe that’s part of the puzzle.

I’m not opposed to trying some t3 again but feel hesitant at the moment because I’ve struggled so long to tolerate levo alone.

[RedApple in reply to GreenTealSeal_]

Ah, so sorry didn't know this.

Hint - Good reason not to delete your account as we can't see your posting history! 🤣

[GreenTealSeal_ in reply to RedApple]

Lmao 😂 I know, I know.

I regretted it instantly but was feeling so incredibly low and hopeless and just felt like I was being a bother here.

I think it’s in my bio!! If not I’ll add it in

[RedApple in reply to GreenTealSeal_]

You're absolutely NOT a bother here. That's what the forum is for, to support you in this miserable journey you're on!

Will ponder on your issues and come back if I have a brainwave (unlikely but we can hope!).

[GreenTealSeal_ in reply to RedApple]

Thank you!

...and I'll be sure to share if I find anything that helps/works!

[Wua13262348 in reply to GreenTealSeal_]

Birkie, another forum member cannot tolerate T4 and T3 tablets and cannot tolerate liquid levo. She is currently having no problems at all tolerating compounded NDT from Roseway Labs. She does have to pay for it though .

I think Jaydee , a forum administrator has big problems with histamine and has posted about them in the past.

[GreenTealSeal_ in reply to Wua13262348]

Roseway’s own compounded stuff seems so expensive though so I’m hesitant to try and feel I need to exhaust all other avenues first. It’s on my list of last resorts! I worry with NDT cos your t4/t3 ratios are kinda locked in which obvs isn’t that ideal either

I actually feel like I’m tolerating the liquid a bit better overall apart from this horrific ‘allergy/histamine’ reaction. It feels exactly like hayfever x1000…🤧

[GreenTealSeal_ in reply to Wua13262348]

Also thank you for pointing me in the right direction for others posts! I’ll have a look see what I can find!

GlowCoach just wondered if you had any thoughts or suggestions please?

I’m fed up of being so overwhelmingly snotty and congested 🤧😭

[GlowCoach Administrator in reply to GreenTealSeal_]

Which brand of levo do you get at the moment? robably a lactose free one might be good for you.

Have you tried gluten free yet and also dairy free? Dairy can often cause sinus congestion issues alone.

To work out if you have issues with histamine you need to trial an elimination diet. Cut out all high histamine foods temporarily, keep a food diary of what you eat and any symptoms. This will help you pinpoint foods you dont tolerate well.

This list is a well known starter point for many witsh histamine issues. Remember that food needs to be very fresh too, not days old.

histaminintoleranz.ch/downl...

[GreenTealSeal_ in reply to GlowCoach]

Thank you!

Currently taking Mercury pharma liquid levo…I have tried many and varied brands and types of levo (lactose free, acacia powder free, liquid) they all cause the same reaction unfortunately and it starts within the hour of taking it, always the same. I take other meds with lactose in and they aren’t causing this high histamine reaction…just levo or lio seem to do it!

I was gluten free for a decade and dairy free for the 2years- unfortunately it made no difference and I tried this again after starting thyroid meds last year with no change.

I’m hesistant to do the histamine diet as it is so incredibly limiting and my weight v low already. I don’t feel like foods are my trigger. Levo lio seem to cause a huge spike in histamine levels for me which makes it feel impossible to take …

[GreenTealSeal_ in reply to GlowCoach]

I just edited my response cos I missed som of your questions, sorry.

So is there nothing else to be done for histamine aside from diet? I’m worried that won’t be enough to allay this horrid reaction from taking the meds.

I found a couple studies about thyroid meds causing high histamine and I think that’s what’s happening for me. That then in turn impact my thyroid function and conversion which I read histamine can do 🤔

[GlowCoach Administrator in reply to GreenTealSeal_]

There are medications for MCAS and high dose antihistamines for histamine issues but getting them on the NHS can be a post code lottery, so if possible I hate to say it but going privately to a consultant that has an interest in MCAS would be the fastest route. There are UK MCAS groups on facebook that keep lists of relevant doctors.

Avoidance of triggers is very important and if Levo is a trigger then obviously you can't. It could be that once your body realises what its missing and begins to get some Levo you react. Even as an experiment it would be a good idea to do a food diary to try and pin point anything thats an issue.

It really depends how fed up you are with the symptoms.

[GreenTealSeal_ in reply to GlowCoach]

I can’t function or breath properly after taking levo so can’t really leave it be

Are histamine issues the same as Mast cell activation syndrome?

Thank you, I will check out the Facebook groups and see what I can find.

I’ll keep a good diary too but I don’t notice a huge influx in symtpoms after eating usually…but maybe I need to pay more attention!

(Sorry for all the Q’s I’m just struggling to get my head around it all!)

[GlowCoach Administrator in reply to GreenTealSeal_]

Ask what you need to ask.

You can have histamine intolerance on its own, same with MCAS, it can be on its own or they can occur together.

There are other intolerances as well such as nightshades, salicylate intolerance, sulfites, amines etc

healthline.com/nutrition/co...

What dose of Levo have you managed to get up to?

[GreenTealSeal_ in reply to GlowCoach]

I am on 62.5 at the mo because 75 is too much but I do wonder if this histamine issue is really impacting my conversion 😔 I did try adding a small amount of liothyronine last year but couldn’t stick with it because the allergy symptoms were SO unbearable and joint pain/stiffness I could barely walk. I feel like both levo and lio send histamine to 1000%! It gives me humongous lymph nodes too- the ones in my neck double in size and never go down until the meds are stopped (4mm and under is normal and mine were 10.6mm on my scan)

Having looked up MCAS, I think it sounds more like histamine issues for me, maybe.

[GlowCoach Administrator in reply to GreenTealSeal_]

I wouldn't overthink the conversion thing. It is what it is regardless of cause.

If T3 hasn't helped then I think you need to be exploring diet to help symptoms.

[GreenTealSeal_ in reply to GlowCoach]

Thank you for the link. It doesn’t look as restrictive as I thought so will give it a go! Nothing to lose by trying

[Susan88 in reply to Jamima]

Hello there, so I started to have quite bad histamine reactions and it coincides with DEPO injections.. and also my TSH is now sky high (T4 within a range). Is there a way to check oestrogen/what to do with it please?

[GreenTealSeal_ in reply to Susan88]

Is that the contraceptive injection? Are you new to taking it…perhaps it may settle with time?

[Jamima in reply to Susan88]

I’m afraid I don’t know enough about contraceptives, but I did a quick google on depo and thyroid and found a paper, details below. Might be worth a bit more research and/or changing your birth control if it’s causing thyroid hormone instability.

I found a PubMed paper discussing a study on just this but can’t seem to paste the link. It’s titled ‘thyroid function during the first year of use of the injectable contraception depot medroxyprogesterone acetate’.

[Jamima in reply to Susan88]

Hi Susan88 - forgot to add that depo injections actually lower your natural oestrogen so it’s unlikely that oestrogen is the culprit for your histamine reaction. There are various companies who provide sex hormone testing kits but why not ask your gp for a sex hormone test? Doesn’t harm to ask.

[Susan88 in reply to Jamima]

Very true! Thank you, I didn't think of that 🤦‍♀️

[GreenTealSeal_ in reply to Susan88]

Could be wrong but I was under the impression that taking any kind of synthetic hormones (like in contraceptives) can aggravate or cause estrogen dominance(?) even if your E isn’t that high, taking synthetic progestins can cause issues because you are lowering your ‘natural progesterone’ levels.

Just something to think about as it may be a contributing factor. I’m on contraception too and looking to stop it soon to see if it helps and see if I can address the hormonal wonkiness better that way!

[Jamima in reply to GreenTealSeal_]

Hi GTS - I’ve been using HRT for close to 15 years and before that, at least 20 years of bcp, never come across any info that suggests progestins increase oestrogen, there are some, eg, norethisterone which can, at very high doses aromatise to EE, but I’ve not heard of any others which do that. The principal action is to override or shut down your own production except for pop progestins. Do you have info on this?

[GreenTealSeal_ in reply to Jamima]

Ah ok. I meant more that synthetic progestins lower your natural progesterone and this can cause issues.

I joined a hormone support group sometime ago and it’s often spoken about in there.

I think it’s more in relation to when the synthetic hormones are stopped.

[RedApple]

'Anti histamines aren't touching it.'

Have you tried different ones? Also, try taking the anti-histamine an hour before the levo to give it time to get into your system first.

[GreenTealSeal_ in reply to RedApple]

I've tried a couple taken beforehand (piriton and loratadine)but they haven't done much of anything from what I feel. It's hard cos so many of them cause drowsiness too!

[RedApple in reply to GreenTealSeal_]

Cetirizine works better for me. Some find Fexofenadine (branded version Allevia is expensive!) helps them. We're all different, so trial and error.

[GreenTealSeal_ in reply to RedApple]

Ah okay. Thank you! I will give those a try, nothing to lose! Isn't Fexo prescription only tho?

It would be nice even if it just reduced the puffy face and eyes a bit!!

[RedApple in reply to GreenTealSeal_]

Low dose available OTC. But you can get higher dose prescribed.

I would talk with GP about this anyway because you can't live your whole life taking antihistamines in order to tolerate levo!

[GreenTealSeal_ in reply to RedApple]

Ah okay! I'll try OTC and see how it goes!

Yes I know, it's v annoying tbh! allergy symptoms are no fun so to have them daily is completely rubbish!

I already have and they suggested the liquid levo incase it was something in the tablets but I'm not so sure that's the case.

They are v aware cos it also makes the lymph nodes in my neck swell up to double the size which they were initially worried about....but now not bothered(!?) They did a scan and they look fine just super inflamed...

[RedApple in reply to GreenTealSeal_]

Not bothered because they don't know what to do, so just shrug it off 😡

Definitely try every OTC version. Loratadine is weak, so you could also try two of those.

[GreenTealSeal_ in reply to RedApple]

Pretty much yeah! It was my suggestion to try the liquid because of what I read on here! He was useless tbh.

Oh o didn’t realise they are weak so I’ll try two for now! Thanks!

[Hedgeree in reply to GreenTealSeal_]

Hi GreenTealSeal,

Glad you're back! 😊

Did you try Vencamil (Aristo) brand of levothyroxine? You mentioned other brands in your thread. It's in tablet form, may be worth a try?

[GreenTealSeal_ in reply to Hedgeree]

Hello! ☺️👋

I haven’t tried that brand but am now on the liquid. It’s all the same unfortunately 😭 I may try that next but I feel like the actual active ingredients is what’s causing a huge spike in histamine..,possibly, just a guess!

[Hedgeree in reply to GreenTealSeal_]

I've used Fexofenadine (Allevia) as I have much itching associated with other autoimmune issues. It helped that a lot without any drowsiness. I got a small box from Savers so was only a few pounds. It may be worth a try? I realise your problems are different but it worked within an hour and for my itching (which is an extreme scratch till you bleed type of thing 😐) it stopped it for nearly 24 hours.

[GreenTealSeal_ in reply to Hedgeree]

Oh gosh that sounds awful but glad Fexo helped! I’m gonna pick some up over the weekend…nothing to lose by trying it!

[arTistapple]

Glad to see you back. Totally understand your frustration.

I don’t know the first thing about histamine but obviously others do. Get to it.

[GreenTealSeal_ in reply to arTistapple]

Thank you!!☺️

Hope you’re doing okay!

There’s so many puzzle pieces, gonna give somethings a try and report back!