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...
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GreenTealSeal_
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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
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!
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 🙄
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!
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.
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 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?
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.
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.
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.
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!
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.
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.
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.
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…🤧
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.
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 …
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 🤔
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.
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.
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?
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’.
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.
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!
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?
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!
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...
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!
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.
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