Just an update for anyone and maybe hopefully it may help someone (?) sorry it’s a long one…
Vencamil is sadly causing the same reaction for me but I’m going to stick it out for a bit longer and see if things worsen or calm.
But seems like all levothyroxine and liothyronine (combined/mono/varying dosages/brands) are causing an aggressive histamine reaction.
On these meds I experience severe worsening of constipation and gut issues, bouts of low blood pressure and low blood sugar, completely pale face, puffy eyelids and face, sore red itchy eyes, sore red itchy patches of skin, inflamed aching joint and muscle pain. Wheezing and worsening of asthma. Snottiness and constant sneezing/rhinitis. Worsening cognitive function, poor memory and unable to think straight (feels like I have dementia tbh) Loss of appetite. Issues with speech (apparently common in low dopamine!) myoclonus, strong involuntary jerks and movements. (I’m probs missing some but basically it turns inflammation up to a thousand and I’m crippled by it)
Additionally on thyroid meds, my bloods become even more abnormal: Prolactin is abnormally high and gets HIGHER the more I raise my thyroid dosage, this has a knock on effect on my dopamine levels making them undetectably low. SHBG is sky high and testosterone is abnormally low. Low phosphatase/phosphorus levels. ALL OF THESE LEVELS NORMALISE WHEN THYROID MEDS ARE STOPPED for 8+ weeks. This has been checked several times and is always the case.
I believe my issue is histamine or some other kind of inflammatory substance (cytokines?) Histamine can increase prolactin and cause all the symptoms listed above. Histamine also can impede t4-t3 conversion and impact how the body utilises hormones (feel like all the t4/t3 I add swims around my blood does nothing) Histamine also causes inflammation which would explain why all these inflammatory issues get severely worse on medications that increase histamine.
As histamine can impede conversion this would also help to explain why when not on thyroid medications my TSH varies wildly (week by week!) but t4 is always at 16-17, t3 is often up and down and all over the place. I find I can help myself to Feel better by not eating at all…which is a problem in and of itself!
Histamine can also cause high cortisol (it soars to try and maintain control of inflammation) my saliva cortisol is always normal until I take thyroid meds and then it is absolutely sky high. On t3 it becomes more and more abnormal the more t3 I take throughout the day and I am incapacitated with the symptoms detailed above.
I have tried other medications and these has caused the same symptoms only To find out they also raise histamine: metformin, transdermal estrogen.
I have PCOS but have never had a period, ever and all the usual treatments (metformin, inositol, provera) do nothing. I am very slim with a low normal bmi and have never struggled with weight gain or signs/symptoms of insulin resistance. My progesterone and estrogen are both low off of contraceptive pill but testosterone is high. I honestly believe that my PCOS is down to inflammation and potentially histamine. I have cystic acne, hairloss and oily skin, primary amenorrhea, but no excess hair growth or anything. My endometrium never thickens even when off the contraceptive pill for well over a year🙃 I’ve also had Galactorrhea since 2019 but no one cares because my prolactin is not consistently high.
I have trialled quercetin, DAO supplement, vit C with little effect. I have also trialled utrogestan (good for up regulating DAO and calming mast cells) and feel this helps a little but also makes me crushingly depressed.
I tried a low histamine diet but this is very very difficult when you have absolutely no appetite or energy and is extremely restrictive.
So I guess I’m just wondering what now…
I have an NDT trial arranged hopefully for January but I feel this will cause the same response.
I’m NOT hashis and apparently my thyroid looks ‘pristine’ on ultrasound so there’s definitely something going that’s causing impaired thyroid function. TSH is an inflammation marker? On occasion my ESR, CRP and eosinophils are also raised. I’ve had a rock hard inflamed lymph node in my neck for over a year now but nhs aren’t bothered about that either.
They thought I had lupus before but because all my inflammation markers fluctuate and I don’t have butterfly rash they’ve discounted that.
The only medications I felt have ever helped me are the contraceptive pill (inflammatory symptoms are slightly less when my ovaries are turned off it seems!) and whenever I’ve taken steroids for one reason or another (I feel as close to normal as I ever have when taking these and all symptoms completely disappear!)
So basically I feel like all my issues stem from inflammation and histamine…just writing this here incase it helps someone else or they can relate…
Right now I’m feeling very hopeless, it’s been 2 years and I’m no further forward and all the medication I’ve been promised would help me have only made things worse…
Just feel a bit like I’m on borrowed time and eventually I will lose my career, relationship, any opportunity to start a family and my home all because no one will help me or believe me and things will just continue to deteriorate. Which feels pretty bleak considering I’m only 33.
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I’m in the same boat!!! I had to stop thyroid meds and I just turned 36. My histamine seemed to get worse on thyroid meds. I’m wondering if armour thyroid caused me to be histamine intolerant.. or raise histamine levels.. I do have hashi and I feel like my motor slows a lot but if I take thyroid med, even a tiny bit, I swell in through due to high histamine levels.. not sure what to do.
It’s awful isn’t it and when I ask doctors about it they look at me like I have 2 heads and I’m crazy. There are a few studies that show thyroxine/thyroid meds in general can spike histamine so it’s clearly a known issue.
I’m sorry NDT did the same for you. I imagine it will do the same for me too but I feel like I have to give it a go!
Oh you poor thing. Your condition sounds so out of control 😞.
You could have genetic impairments that (for example) impede DAO activity and histamine excretion, thus leading to eventual uncontrolled levels of histamine buildup. And/or SNP’s on certain genes regulating neurotransmitter histamine that effects many physiological processes and can induce awful neurological symptoms.
However, because genetic testing is expensive, when I had my previous histamine issues I was recommended to initially have a blood DAO test that measures the activity of Diamine Oxidase. This is the main intestinal enzyme involved in histamine metabolism. As it turned out my levels were just over-range indicating all was working, just a little too well!
If you can’t afford a practitioner to help you with your issues, you could ask your GP for a referral to have MCAS investigated. Long term high levels of histamine can make you feel really unwell and induce all sorts of unwanted conditions. It is generally poorly understood and once in that vicious circle it can be difficult to break as mast cells become overly-sensitised and easily triggered to release further histamine with even minor stimuli such as stress, meds, foods, and even temp or humidity changes.
The DAO Activity test I had taken at The Doctors Laboratory in London.
I can’t remember the genetic test I was recommended as it was many years ago and it would be worth shopping around but it was something like this ….. athenslab.gr/en/exetaseis-p....
Your BH is great for a general picture, but I was suggesting a comprehensive look at only the relevant genetics and nutrients directly involved with histamine metabolism.
For example variations in genes that code for the enzyme DAO (diamine oxidase) and HNMT (histamine-n-methyl- transferase). Then if impairments are detected that support symptoms, encouragements can be given to improve genetic behaviours. If impairments aren’t detected then secondary HI can be investigated.
It made me go back and look at the results, histamine and DAO results then links into the methylation pathways so thought this might cover all avenues? Though I did add on the Well Woman traits too to look at hormone clearance etc
I bow to your greater knowledge in this field 🙇♀️
Thanks for sharing Tigger is this what was tested in the link above?
I am interested to test DAO and also a few bits mentioned here in the list. Allergies histamine and insulin secretion may hopefully shed some light! I defo don’t think I have insulin resistance however I defo rely have times when my body overshoots insulin and my blood sugar crashes to 2!🙃
That’s a lovely lot of genes you’ve had tested. I was thinking how much genetic testing has come down in price. Ten years + ago I paid more than the cost of this test for just VDR. MTHFR was a stand-alone test too just slightly cheaper.
It’s great they put these packages together now a days.
Thanks for your reply Radd. I’m so sick of it all right now tbh but wanted to share as much as I can incase it helps someone else who is feeling hopeless!
I have wondered about genetics too so will look into this more- thank you! I‘ve been thinking about when this began… I had awful unrelenting colic as a baby but then loved food as a child as was generally happy/healthy. Things ramped up awfully in my teens at around 15 and I actually missed a lot of school due to feeling generally unwell. I would often skip breakfast and lunch as felt better without them and eat in the evenings when I got home. I went on the contraceptive pill at 17 and this helped somewhat but I still feel the histamine/inflammatory issues have continued to build since then.
It’s defo out of control as I say the only thing that vastly improves things is not eating at all (which is obvs a poor solution!)
I will try asking my GP but I thought NHS don’t treat or recognise MCAS and there were no treatment guidelines? I’m due some allergy testing next year so was hoping to broach the subject then. NHS want to do a patch test (?)
The only thing that mildly puzzles me is histamine usually feeds estrogen and makes it high but mine is always post meno levels…but I guess impaired thyroid function could be doing that or PCOS itself.
I’ve been saving some money up to investigate this so thanks for pointing me in the right direction!
That’s because it’s not only histamine stimulating oestrogen production but the oestrogen stimulates mast cells to release more histamine. Oestrogen also down-regulates the DAO enzyme making excess levels difficult to metabolise. Usually HNMT and DAO clears histamine but levels can become too high for the body to manage well.
Thanks for posting all this information GreenTealSeal_ . I have been thinking along these lines since Mercury Pharma Levothyroxine has caused no end of problems in my body, starting with small pin-prick spots coming up overnight and causing great soreness all over my body. I really feel this was caused by improperly heat-treated Acacia Powder, but wonder if the fall-out from this would really go on for this long - 14 years since 2010. The only NDT that really worked for me was WP Thyroid from Get Real Thyroid, which is now off the market. I don't hold out any hope that I will get any help from NHS, even though it was medication from them that caused my Son and I to have these problems simultaneously as we were both on the same Levothyroxine. The information about the Acacia Powder was in a very old copy of the Medical Excipients Handbook for Acacia Powder and I no longer have this information. It may well be in archived copies of Thyroid UK papers.
I’m so sorry you’re having such a rotten time and for so long with little help from NHS. It’s not right
Have you tried other NDTS? I know you can get compounded versions from Roseway but obv at a cost!
I think acacia definitely causes a more
pronounced histamine issue for me, I notice more face and lip swelling on those formualtions.
You could check your prolactin to see where that’s at (obv can be high due to poorly treated hypo but can also be raised due to high histamine/inflammation/stress) might be worth checking to see if it’s a useful clue!
If I make any progress I will be sure to share an update here and hopefully it may have some info that could help you too!
I do have a compounded NDT from Roseway, and, Yes, it is quite expensive. It only has a ground rice filler in a pig gelatine capsule, which I discard and dissolve in water, but the rice seems to be coming through in my mouth and I guess all over. The only good thing about it is that my blood levels are good. I tried Erfa before this, and in the end I was heaving after taking it. It also smelt like engine oil. Armour has Acacia Powder in it, although I did try it and it made my mouth sticky. Goodness knows what went wrong after Goldshield went off the market in 2010 and Mercury Pharma took over. The generics do not seem to be working at all. Would love to hear more of your journey as you go along. Good to share what happens to us. Will see if I can get GP to check out Prolactin. My SHBG is normal for age and medical background. Thanks for all your information so far and hope you can find something to help you.
GTS, big hugs. As we all know, this education we get from needing to self-diagnose and self-treat is not anything any of us wants.
And although of little comfort I’m sure, I am thoroughly impressed with what you e learned, with so many things investigated, and all these relationships and interplay between thyroid, sex hormones, cortisol, histamines… etc etc. As you know I’m also looking out for my 18 year old daughter, and thyroid and sex hormones are all on the table. Reading your posts helps me learn as I try and figure out her issues. So thanks for taking the time to share this.
It’s a long road, it’s always darkest before the dawn, I am sending all good and hopeful thoughts your way.
Oh definitely I was so prepared to start levo. 2 years ago and just crack on…how I wish that was the case!
Thank you for being kind. When I wrote all this out last night I figured no one would read it because it’s way too long or maybe just say what I was experiencing isn’t a ‘real thing’ 😬
Glad you found it helpful and something to consider for your daughter too! Remind me, does she also have PCOS?
When I have more to share and hopefully some good progress I’ll be sure to post an update (and try to keep it brief lol!)
Have you thought about trying LDN? It may damp down the inflammation. I take mine in sublingual drops as my stomach doesn’t tolerate it. clinic158.com is the starting point for a self referral
. I think I have MCAS but I haven’t found any doctor to help with it. All the allergists I’ve found won’t treat it. Very puzzling. There is a MCAS society which may be able to recommend a suitable doctor. I’ve not tried that yet
Ah thank you Bertwills! Yes sorry I’ve been doing a lot of posting here lately! 😂
I’m hopeful I can get a trial of LDN next week, feel like anything is worth a go!
I have an NHS allergy appointment next year so was hoping to raise this then and see what they say. I believe NHS don’t even have any treatment guidelines for MCAS so not hopeful but still worth asking! Will let you know if have success!
I have the list from MCAS society! I can private message you with it if you’d like? Just let me know!
Yes please, I’d like to see the list. I have awful Multiple Chemical Sensitivies so I suffer badly from them. NHS ignores me completely. So do private allergy consultants. I’ve a long list of failures. Sarah Myhill didn’t help either & was expensive £400 for nothing useful. Maybe there’s somebody on your list. 🤞
Grr. I’m sorry, it’s all so maddening cos leaving all this only leads to more issues down the line so it’s not really as cost saving as the NHS thinks.
Sorry Myhill was useless too…I’d read some bits on her website and thought she was supposed to be good
Great post GTS, it’s so valuable when folks share their trials and outcomes. You really are becoming expert and will eventually hit upon solutions. Keep the faith.
I’m sorry Vencamil didn’t work out that sucks.
Have you had your pituitary checked over?
A recent gynae wanted to put me on Zoladex (gosrelin) which shuts ovaries down, might that be an option? There is a known Hashi’s interaction but perhaps one of the endometriosis ovary halting drugs could work for you? Just an idea.
Aw thank you! I was worried it was too long and boring for others to read, haha!
I’m feeling hopeless and running out of steam to be honest but all these encouraging comments will keep me going and hopefully I can share a positive update soon! I’m going to give Vencamil a few more days in the desperate hope things settle!
I have had all my pituitary hormones checked and they are ok (aside from raised TSH) my pituitary looked ok on brain MRI (they didn’t want to do a special pituitary one.) I think because my prolactin levels are so up and down and all over the place they’re happy to say it’s not prolactinoma.
I contacted the MCAS society (as you know I’m suffering also) and they sent me a list of practitioners. Looks like a good list, however I never got around to contacting anyone as I’m still trying to get my thyroid sorted first (and there’s only so much money in the bank!). Let me know and I’ll DM it over x
I also found some further information on Quercetin dosing since our last chat here:
Oh ace! I have the list too but like you have been trying out some other things first.
The costs mount up don’t they and it just makes me rage that NHS don’t give a flip or offer anything!
I did enquire with a few of the MCAS doctors but one suggested a few things I’ve already tried so couldn’t justify paying for an appointment with them to prescribe what I’d already tried😬
these appointments are so expensive I do worry about being exploited but I think I’ll research and give one a try! The waiting lists are often v long too which makes me sad that there are so many struggling with similar issues that nhs won’t even acknowledge or recognise as an actual condition.
I've just remembered there’s a really comprehensive chapter in the Period Repair Manual on PCOS and inflammation. Have you got this book? It’s really great, I’d highly recommend it. It talks about the different drivers of PCOS, different types of PCOS like adrenal and inflammatory and also if you develop it after the pill. Just a thought. It’s very pro-thyroid too (as in not like NHS doctors).
Also by complete coincidence, or my phone listening to me, I just been served this post on Instagram:
I haven’t got the book but will look it up! Thanks!
I definitely feel like I have inflammatory PCOS but what is infuriating is that regardless of what PCOS type you have, all the advice is the same. (Diet, insulin sensitising meds, progesterone etc) and they don’t work for me…
I had read about reverse circadian rhythm corticosteroid treatment for PCOS which I feel could possibly help me but it’s an old fashioned (but has a high success rate) so I doubt nhs even offer it anymore.
Here are the pages re: inflammatory PCOS. There’s a whole chapter with lots more info but hopefully this is helpful to start. Apologies if you know all this already or tried the suggestions!
I’m sure I’ve used the diagram in pic 1 to work out it’s likely inflammatory PCOS (probably saw it on her website!)
It just worries me as it does say there is no conventional treatment for inflammatory PCOS (which is insane!)
I’m gonna try adding in the supplements suggested but go steady with NAC as I think it can aggravate histamine/mast cells.
Interestingly I was gluten free for decades but found this made no difference to me so reintroduced. I was dairy free for a few years in that time too and found the same thing
I do wonder if what causes my ‘inflammatory’ is my inability to handle and process histamine as histamine is really inflammatory!
Pure speculation but I wonder if this is why I feel better on the combined contraceptive pill as taking synthetic estrogen orally can cause a slight increase in cortisol which likely helps to keep inflammation a bit more in check.
When I use estrogen patches or gels they cause the same reaction as levo
Sadly I feel like all the diets and supplements are not enough to dampen the inflammation and then it gets really out of hand when adding any histamine increasing medication
Can I be nosey and ask how much quercetin you take?
I find it makes
Me very nauseous and the first time I took it, it made me vomit so starting low and slow and taking it with food to avoid nausea! Not sure if it’s helping but can’t hurt surely!
Hi, I'm not so sure about the not hurting bit - I have read a suggestion that it might be immune boosting and so should not be part of an autoimmune protocol, but the author who quoted that possibility was not personally in agreement and said how useful it can be - a balance as always. Micki Rose (the author in question) notes that it is all derived from legumes, hence lectin sensitivity potential so that could be why you are having a problem. It also may, in higher doses, affect kidneys and a few suggest taking a break from time to time. Good in theory but as I react to rather a lot, not so easy in practice. It has helped me a lot.
Not nosey at all - I use Lambert's as it is grain free - usually 1 tablet, which is 500mg, in the morning, sometimes an extra half tablet at lunch or dinner if feeling a slight issue (I chop them up) and rarely increase to two x 500mg if weather is horrendously windy etc which is a big trigger for me, or out and about with chemical exposure. But I started with 1/4 tablet and increased slowly, as with everything. I do stick to a moderate histamine diet and adapt diet if other triggers are a problem (no fish in high winds!!). I eat lots of watercress, drink ginger tea, use magnesium spray at night etc. (Micki suggests 600-1000mg per day for max 3 months then try to keep under 300mg if on it long term. I try to only have a half tablet if eating lots of quercetin containing foods and otherwise on a reasonably stable phase).
Absolutely agree with your point about anti histamines making it worse, that is also my understanding, although I know some use both techniques. I think even Lawrence Afrin uses them for some people, but haven't finished reading his book yet!
That’s really useful to know thank you! I think I’m going to trial for 3 months and see how I go.
I do wonder if it was less the quercetin causing the vomiting but sometimes happens when I eat or take supps first thing in the morning. (Which is when o was taking the quercetin) My tummy is so sore and acidy in the mornings. I haven’t been able to eat breakfast for a decade for this reason.
Hi, not eating breakfast is definitely not going to be helping, sadly. Even if it is just a tiny bit of protein, you need something. Not much point taking supplements if you aren't digesting properly as you have to be able to absorb. I needed more acid, as is common. Incidentally Micki Rose has PCOS and MCAS herself, might be worth a chat with her shop.purehealthclinic.co.uk... She is very kind and I've found her really helpful - I have a couple of her books too
Sadly eating more makes my histamine worse and I’m severely unwell so no I can’t eat breakfast currently. I would lose my job if I I did that. Believe me I have tried over the years and been on many diets that don’t help if I eat breakfast the rest of the day is a write off as I am so sick.
it’s not the ‘not eating’ that is the cause here, it’s that my symptoms are so severe they limit my ability to eat.
I also don’t I have low stomach acid and I absorb supplements very well, can see that in my blood very clearly and quickly!
Although I have PCOS it doesn’t seem like the typical PCOS and endos often tell me that phenotypically I don’t fit the picture…No insulin resistance, no thickening of endometrium, never had a period, low healthy bmi, no excess hair. I have tried all available PCOS treatments and they don’t work and have no effect sadly or make things worse. All the diets too and nothing.
I will look her up though!
I sadly find a lot of practitioners just recommend micronised progesterone therapy and this doesn’t work for me….(and isn’t really useful as estrogen is also low) it doesn’t bring periods either or address the whole picture as inflammation is huge part of what I deal with day to day.
Sorry I just find it triggering a bit when it’s suggested that eating more will solve this. It makes things worse and forcing myself to eat more meals makes things even more severely worse.
I am so sorry, I didn't really mean to imply either that not eating was the cause, nor that eating more would fix it all, as neither are true. I found personally that it was one strand (of many) that I had to work on, as I wasn't absorbing anything much from my food (or my supplements). It is interesting that your supplements do affect your blood levels, although that doesn't necessarily mean that you are metabolising and getting them from blood to cell - that was also a problem for me. Micki herself was down to 8 foods and couldn't tolerate water, so I think she is worth looking up. You never know. All the best to you x
It’s just the first gp I ever saw about this implied that I should eat 3 meals a day and gain weight and that would solve everything and that it basically was all my own fault.
I followed her advice, gained a stone and just felt sicker and sicker pumping food into myself!
Sounds like me and Micki are similar, I’ll have a look at her site, thank you!
Hello GreenTealSeal_, I just seen your post on Histamine/Levothyroxine. More of less I had the same symptoms. I was diagnosed with histamine intolerance and MCAS. My Diamine oxidase has been consistently low. I now take antihistamine and DAO supplements whenever I eat a high histamine food. Before starting antihistamines, you should be tested and directed by somebody medically trained. May be this could be a solution to some of your issues. Best wishes and I hope this is helpful.
Hello, I was seen privately and yes, now I am tolerating thyroid medications much better. Starting with a DAO test is a good starting point but definitely need to see somebody medically trained before starting a treatment. Good luck.
Your post is extremely exhaustive & succinct, I very much hope you’ve got it saved somewhere to draw upon again in the future?
This might be a shot in the dark and there’s every chance I’ve mentioned this before (under your previous moniker), but, have you considered B12 deficiency and/or PA? Some of your symptoms correlate, especially with regards to your muscle spasms, gut health and menstruation.
I appreciate that some of your symptoms worsen whilst on thyroid replacement.
But I’m wondering whether it’s worth sharing details of your lowest B12 result, folate and complete blood count (particularly MCV & MCH) here and/or on the PAS forum?
As you’re no doubt aware, B12 deficiency/PA is poorly understood and, as a consequence, difficult to diagnose. Patients very often need to become their own advocates with many resorting to self treatment. Sounds familiar, right? To compound the problem, many of the symptoms overlap with other chronic conditions, particularly thyroid.
It could be something to rule out, although I appreciate that you’re about to trial NDT. Did you go for LDN as well?
I note that you’ve previously tried T3 only, I wonder if you’ve considered ever giving Paul Robinson’s dosing protocol CT3M a go? This can also be done using NDT, as I understand it.
Keep posting, don’t give up. You’re overdue a break x
Hello and thank you! I really tried to keep it brief but it’s hard when I feel like stuff is so complicated!😆
I haven’t really considered PA as my b12 has always been in range however I defo don’t know very much about it all!
I will dig out my B12 and folate levels before I started supps and share them here! Is MCV, MCH included in a full blood count? If so I should be able to dig that out too!
My b12 was super high after supplements when it was tested in summer so I’ve stopped taking for now.
Yes so hopefully I should be able to trial NDT next week and was also going to ask to try LDN too. I anticipate NDT will cause the same symptoms as above but it’s worth trialing to know for sure!
At the very least I’m hoping LDN should
help!
It’s exhausting and the thing I’m finding most depressing/discouraging is that the NHS don’t want to know. The last gp I tried to raise this with said the majority of people feel better on levo and there was implication I was being dramatic/making it up. Feel like I’ve been going round in circles with them for the last 2 years
I think the moment you come to terms with the sad fact that, actually, the NHS don’t have the capacity to truly care about difficult to diagnose conditions and that people can be left to basically fester is a significant one.
The internet has democratised so much, we’re now able to be active participants in our health, rather than clueless subjects. Patient forums are truly transformative!
Of course there’s exceptions; I recently needed to have a gynaecological examination done on a 2 week pathway and I’ve been taking a friend to radiology appointments. The NHS can work extremely well in particular instances.
I appreciate it’s another rabbit hole for you to investigate, but, B12 deficiency/PA is certainly worth a consideration, in my opinion. To further confuse things, there’s a condition called ‘functional B12 deficiency’ where blood results are within range (without supplementation). Also, there’s compelling evidence that the equipment used to analyse blood tests has limitations, potentially rendering results unreliable.
Yes exactly!! NHS is GREAT for somethings but for everything else they are shocking, old fashioned, has lighting and move at a glacial pace. But then it is obviously a privileged position if you can ditch them and try private clinics. It’s so difficult but I have no faith in them anymore.
No no, it’s a very useful rabbit hole
To investigate, thank you! I’m gonna read up this afternoon!
Hi, a good call from J972 as I was just about to suggest B12 myself. The fact that supplements raised your bloods high may mean that is it swilling around but unable to metabolise properly (functional/cellular deficiency) - either way, it doesn't mean that you can't have a deficiency. Many can get their serum to raise with supplements but injections are the only way to know for sure if B12D is part of your issue. You may have issues clearing toxins (methylation etc) and B12 itself is anti inflammatory. Hopefully you are gluten free. This is a link to Micki Rose's PCOS page, in case you haven't found it purehealthclinic.co.uk/pcos...
Interesting thank you! I’m gonna collect my test results and make a post in the PA group and ask cos I hadn’t really considered this much!
I was gluten free for over a decade but noticed no discernible difference in symptoms so added it back. I was also dairy free for a time but again noticed no difference
I must admit although I did get immediate benefit from being GF (and dairy free), it was going completely grain free that helped me more - corn issues can be more common than wheat and of course it is in everything. Best wishes
Hi GreenTealSeal, if you think the problem is Histamine, can't you just take an anti- histamine every day? Tablets or spray. I take Flixonase (fluticasone) spray every day which is a steroid nasal spray. You did say you felt better when taking steroids. My Doctor prescribes it, but I think you can buy it at the Chemists called Pirinase I think. If you just keep stopping and starting the Thyroid medication that will make you feel worse, as it takes 6 weeks to settle down again.
Hi, unfortunately it’s not as simple as just taking an antihistamine (and believe me I have tried multiple types, doseages etc and they don’t touch the sides in regards to how serious my symptoms are) I have also tried nasal spray but it doesn’t do much.
Antihistamines do not lower the amount of histamine in the body, they just block some of its effects (mainly allergy type symptoms) so it doesn’t resolve the issue and also it’s not good to take antihistamines indefinitely.
I haven’t been just stopping and starting thyroid medications randomly. I was on thyroid meds from January last year and it severely affected my health for the 9 months I was on it consistently and caused abnormal blood test results too (detailed in my post)
I stopped it early this year and again later this year in order to do the testing my dr required. I have been off of it for months and months at a time and feel better this way so it’s not that going on or off thyroid medications that is the problem at all. It’s the thyroid medication itself causing an increase in histamine which in turn causes all the symptoms detailed above.
Taking thyroid medications with how things are currently will only make the situation worse and taking antihistamines will likely make this worse. (It can cause a rebound effect as it blocks it effects and then the body feels it needs to make more and more to get into the histamine receptors so you can end up with even more histamine)* is my understanding.
I can tell you my experience of synthetic thyroid hormone, I was very ill from 2014 until my actual diagnosis in 2018 [ hyperthyroidism graves disease]
My gp was truly awful, in all that time he couldn't diagnose me, but when I did get the diagnosis my antibodies were off the scale I had graves thyrotoxic [ no saving my thyroid and I eventually had it removed in 2019.
Obviously graves is an auto immune illness so my body was infact attacking my thyroid rendering it overactive, before this illness I was rushed into hospital with server gastric issues, after 6 days of intrusive tests my gastro scratched his head and told me I did not have a viral infection or a bacterial infection in my intestines.
He diagnosed reactive colitis, sent me home after 15 day with steroids 3 months supply..on taking these steroids all my pain went, even my body pain, i felt the best I'd felt in years ..personally I think my body was attacking my intestinal tract as far as I'm aware my antibodies were never checked whilst I was in hospital 🤷♀️
But I'm pretty sure I have an inflammatory condition, as I have server body pain and still have gastric issues, but everything went ten fold when I started on the synthetic T4 levo I just couldn't stomach it, my body pain shot up to the point I couldn't operate, I couldn't walk the pain was so bad.
My gut issues became so bad I had constant cramps and diarrhoea
I did the same as yourself, I took myself off the thyroid medication to see if the symptoms would go,and yes they always subsidised, as soon as I went back on the synthetic T4 all symptoms returned.
I did this a number of times to be sure, and I was a 100% sure it was the thyroid medication.
I've had 5 years of hell from my doctors who just didnt believe me, so this year I purchased some NDT been on it since July 18th, I've had no gastric issues at all my body pain has lessend but is still there , but I've still got room for improvement with the NDT.
I'm so sure the synthetic thyroid medication caused me to feel so much worse..when actually it's supposed to make us feel better.
I also have primary hyperparathyroidism to 🤦♀️ but my gp says "ho we'll just keep an eye on your bloods"🤦♀️...I often wonder if this is also an auto immune condition 🤔
Omg. I cannot believe the medical negligence!! I’m so sorry.
I think I picked your brain about your NDT in another post (I remember you saying you got it’s from Roseway and I’m booked in to speak with them next week🤞)
Interestingly I have similar gut issues on levo/lio I feel like it completely destroys my gut and tummy. (Writing this now after my third dose of Vencamil this am and suffering stomach pains, fullness, acidy, awful nausea, flatulance.) I just feel like it tears my digestive system to absolute shreds!
I’m desperately hoping NDT will help but realistically I would not be surprised if it causes the same issues. But I won’t know unless I try!
I’m glad you’re finding it’s helping you and you’re feeling better after so long!!
PS I don’t know how you stuck this out for 5 years, I’m just approaching two years and I’m not gonna lie there have been times when I think about how much my quality of life has completely crumbled and all that I’ve lost in my life and I don’t want to carry on.
I’m so glad you’ve found a solution and you’re doing better!! Gives me a glimmer of hope!
I hope the ndt works for you..👍I'm having no gastric problems on it but because I also have primary hyperparathyroidism it's really hard to separate the symptoms from over medicated to the symptoms of primary hyperparathyroidism because they can be similar 🤦♀️
I'm in a flare up now after my pth went over again, gp as put me on loading dose of vitamin d, which also gives me gastric issues [ I just can't flipping win] 14 days into taking the vit d and I'm having greasy loose bowles ,stomach pains😔 I told my gp I would...talk to a brick wall!! it also increases calcium and mine is above mid range, which causes more symptoms 😡
I even got the supposed natural vit d the drop formula , I've tried and spent money I don't have on vitamin D everyone as effected my intestines.
I know I'm not over medicated because my bloods are in range [ first time in over 5 years] but I know when I mention my symptoms at my next appointment [ Jan 20th] the gp will jump on the fact I'm on ndt, she doesn't want me taking something she can't control...ha!! She couldn't control the T4 or T3 or had any idea why my bloods were soooo bad🤦♀️
She as now admitted that the ndt as restored my thyroid levels...but still wants me to go back on T4.....🤣🤣🤣🤣🤣🤣🤣 what a plonker..😂
Yeah I imagine it’s tricky to separate symtpoms and work out which condition is causing which. Hope you can get the parathyroid back under control v soon and keep feeling on the up!
It’s mad that she admitted that but I suppose the incredibly restrictive NHS ‘guidelines’ suggest that’s the best course of action (despite if they actually listened to patients and took them seriously there would be other options on NHS!)
I’ve lost count of how many medics have said I need to take levo regardless of how it makes me ‘feel’ (not understanding that the symptoms are so severe and frankly quite dangerous- blood sugars under 3 put you at risk of stroke etc and this was happening regularly on ‘optimum’ thyroid meds.
Others have said I don’t need to take it at all (but offer no explanation for how much it screws up my blood work)One has said I don’t need it even if I were to get pregnant (!?)
Another had said just wait till Tsh over 10 but obvs this issues will still be very much present so it won’t solve anything…I’ll just feel worse!
Basically in short o feel like each doctor has a totally different idea but none of them listen.
Can I ask...when you were taking the synthetic form of thyroid hormone apart from your gastric issues did you have a metallic taste in you mouth?
I did.. especially worse in the mornings, I had to rush to the bathroom and use mouthwash because I wrenched up.. the taste was awful🤮 like old stale blood!!
Also woke every morning with a hangover headache..and I don't even drink🤷♀️
It’s hard to explain but on levo or any thyroid meds. I’d often wake with a gross taste in my mouth and my taste is a bit off(?) dulled(?) my mouth would get incredibly dry too.
I got headaches too particularly with t3 and higher doses of levo- feeling ‘hungover’ is quite a common histamine issue I believe!
I often always feel deathly unwell in the mornings. I haven’t been able to eat breakfast for over ten years because it will floor me or make me vomit. My tummy is so awful in the morning and thyroid meds only seem to accentuate that.
Was just told I had IBS but I don’t buy it and am sure it’s histamine related.
Omg...the old IBS ploy....that's what I was told before I was rushed into hospital vomiting blood and passing blood from my backpassage😫 That was diagnosed as reactive colitis], but as I said in a previous post I'm pretty sure I was in an inflammatory attack, which is what the gastro describe my intestines as....badly inflamed but the length of the inflammation was suspect.
I went on to see an endocrinologist who after seeing the bowel scan said it looked like lymphoma 😮 you can imagine my horror at him just blurting that out, I was alone, I had no one with me and went back to my hospital bed [ in thyroid storm] I was left with the thought I my now have bowle cancer.
But deep down I knew it was the anti thyroid drug causing the problem, and I was yet again proved right...might sound big headed here..but I think I knew way more than the specialist's did..😂 pity I couldn't get their wage for diagnosing myself 😂
I started vencamil about a month ago and for about two weeks my bladder has felt inflammed. I didn't think the change in medication has anything to do with it as others have said how good this one is. I have vaginal atrophy but have been treated with vagifem and haven't had much bother until recently so long as I drink plenty of fluids. My bladder seems to play up at night and is so sore. I take levothyroxine before bed. Bladder slightly painful during the day but at night it's awful. When you say this now I'm wondering if there a link with how I'm feeling. Thanks for sharing your story. You will no doubt help others.
Could be! I know histamine can cause bladder irritation- when I’m having a particularly bad flare up my bladder feels horribly irritated and I’m up and down to pee all day and night (sometimes up to 5 times in one night!!)
I feel like medics know histamine is often an issue for some people but they don’t know what to do about it so just ignore it :/
Although I don’t really have any answers yet I hope this post will help guide someone down the right path/rabbit hole.
I'm glad you did share this. I am going to take my old brand accord for the next few nights and see if any change. I hope you get sorted soon. Thanks again.
Just thinking. I recently had my ears checked and my eustachin tube is blocked. I think histamine is an issue here too. Maybe thanks to you I've found the answer to both my problems. 😊
Yes histamine’s effects are hugely wide ranging in the body so it’s definitely a possibility! It can cause such vague and varied symptoms it’s taken me a long time to consider it. It was actually TiggerMe who mentioned it to me first and the more I read the more I felt
like it was a seriously out of control problem for me that’s likely been going on for nearly 10 years.
Hopefully I can share some positive updates and ideas when I’ve made some progress and found some thing that help me
Sorry you feel hopeless. I know that feeling well.
I thought I would relate my tale in case it helps. Firstly, I had chronic fatigue/depression for many years until, during my treatment for thyroid cancer in my 40’s I found that, without thyroxine in my system I was a normal human. Everything worked normally, all ailments went away. The chains were off.
I fought to stay on T3 only (as we all know, this is a no no). I functioned normally for over 10 years on T3 only. About 18 months ago I started to have some of my previous symptoms (very similar to those you list). It turns out that my body is now producing its own thyroxine, which I now know is a huge problem for me, but which the experts are completely blinkered about. Any mention of an intolerance of thyroxine is laughed at.
So, I have been taking Ibuprofen and antihistamines every day for a year. Easily available without medical interference and effective enough for the time being. They don’t deal with the root problem, but they control the worst of the symptoms.
I do sometimes wonder: if it was mostly males who have autoimmune disorders instead of mostly females…would we now have more treatments?
Thank you so much for sharing and so sorry you to hear you’ve been through the mill too.
It upsets me so much that as patients we have to fight and argue to get what’s best for us. It’s so sad.
Hope you can get you thyroxine levels back down! For me oddly I seem ok with the thyroxine I make but as soon as I add any in it is histamine horror to the max!
I tried t3 mono last year and again early this year but very sadly for me this only spiked my histamine levels more aggressively and actually causes symptoms to become more serious. My breathing was more severely affected on T3 and I often felt like I was going into shock when the histamine flares were bad.
I’ve trialled so many antihistamine and feel like they barely touch the sides sadly 😭 I’ve even tried doubling the dose! I’m worried to try something like ibuprofen as it can agravate mast cells (and mine already seem mega angry!!)
It’s absolute rubbish isn’t it. Ofcourse all these autoimmune issues and hormone imbalances would be taken far more seriously than they are now if it was more common in men.
I’m still astounded that there are no treatment guidelines for non insulin resistant PCOS…i have an inflammatory form of PCOS and I’m just supposed to suffer with no help(!?) that’s completely inhumane and negligent in my book.
Hi GTS, sorry to read your still no further on with everything. I'm no help regarding the histamine problem butjust thought I'd mention this. Have you tried the utrogestan vaginally? Lots of women who can't tolerate it orally, managed to take it vaginally with no issues.
I haven’t no! Anything is worth a try though!!thank you!
I actually wonder if perhaps 200 utrogestan is just a bit too high for me but don’t want to meddle too much by myself. The endo I saw is extremely unresponsive tho - I emailed a few questions at the end of November and haven’t heard back at all.
I actually think it’s the estrogen that is causing the biggest issue. It up regulates histamine which is making me feel so so ill! I thought it may be the alcohol in the gel as I’ve never tolerated alcohols well so switched to the patch but its the same 😭
Hi GTS, you say your stomach acid isn't low have you tried something like a H2 antagonist (Famotodine) to help with histamine/stomach issues? I can relate to being unable to eat and was treated for H Pylori twice which is awful!
I find inulin is helping my stomach atm but it won't be suitable for everyone, soluble fibre is ok but stuff like psyllium husk really isn't good for my system, also some probiotics make me feel horrendous maybe histamine related?
I am currently trialling Drospirenone only pill (Slynd) as the Mirena coil didn't work out! and this type of progesterone can possibly help pcos, i think it's relatively new but I could be wrong.
My husband recently showed me a video of a guy using stinging nettles on himself to help his inflammatory/allergy problems and it seemed really drastic but really interesting (I'm not recommending this btw) but I think nettle tea can also help histamine issues 🤔
They say mega doses of Vitamin C help histamine issues? but just makes me feel like I have gastritis!
Stay positive, sometimes a collection of lots of little changes might help x
I haven’t tried the H2 meds cos no doctor takes any of this seriously 😭 I had some
Stomach investigation yonks ago and all ‘normal’ no infections or bacteria’s.
I’ll look up inulin, thank you! Looks like it can be a bit inflammatory tho so will proceed with caution! Will try out some nettle tea too!
Btw Optibac and Probiota HistaminX are supposed to be good histamine friendly probiotics but I haven’t tried them yet! Maybe worth checking out
So a Combined contraception has always always helped me with these symptoms (I suspect because the combined pill causes a slight increase in cortisol which can help lower inflammation caused by histamine) however over the years things have continued to worsen despite this.
Like you I’ve found progestin only stuff is crap. Things like Mirena are often very androgenic so make PCOS symptoms worse! Can’t understand why it’s often pushed for PCOS. The best kind of
Progesterone only treatment is utrogestan cycling however my estrogen is also low so it doesn’t help me much might help you tho cos utrogestan/micronised Progesterone is good at calming mast cells!
Slynd is supposed to be better as dropsirenone is anti- androgenic however o believe it’s derived from diuretic spirolactone however diuretics can worsen histamine. Dropspirenone is a aldosterone anatagonist too but I’m struggling to see how this impacts histamine levels…research is irritatingly vague! (But you probs know all this anyway plus every woman is different!)
Are you getting Slynd on NHS? It was approved in2019 apparently but then was never added to the prescription rota- good old NHS on the cutting edge of women’s health 🙃
I was on Yasmin (estrogen and drospirenone) and feel like maybe My histamine symptoms were worse on that but I’m not sure tbh as I just got use to the severeness of my symptoms And figured everyone felt like I did and that I was just being pathetic about it. I was on Marvelon before and recall things not being as awful!
I’ve tried taking a reasonable amount of
Vitamin C although when my histamine flares are bad my kidneys struggle (very high creatinine) so worry about taking a load of vit c.
Are you PCOS too?
I think for me my PCOS is aggressively inflammatory and it’s progressing over the years. High TSH and dwindling T3 can often be signs of inflammation or non thyroidal illness and I think this is what happens to me when I have a bad inflammatory flare up!
I’ve tried a bunch of little changes over the years but things have still continued to decline 😭 there is an old fashioned form of PCOS treatment that involves steroids and based on what ive learnt I think this could help me but doubt NHS would accommodate although it’s available
Privately of course!
Thank you though I will look up your suggestions! It’s just hard because I feel this is so severe now it’s past the point of supplements helping
Hey, yeah Slynd is on repeats but not sure if I'm going to be able to stick with it as I've just bled continuously.I'm pretty sure I'm going through perimenopause, I seem to be high end testosterone and low/below range SHBG so there's definitely something not right and a whole bunch of peri type symptoms.
Around the time of ovulation and also the start of my cycle I suffer terrible joint pains generally feeling like I have an infection/very unwell and I start dry retching every morning, although only in the mornings, then my stomach usually feels very full and I struggle to eat anything until about 5pm onwards! Zero appetite etc. This happens at least once a month.
I can guarantee a few times every month I feel utterly horrendous but just try plough on! if my stomach issues are particularly serve it alway affects my heart too which is never fun and I've had 1 episode of AF a year ago.
I've had gasto/gyne tests etc but nothing shows.
I'm prescribed 100mcg Levothyroxine and have a cupboard full of the stuff, I'm still trying 50mcg again as I've been on and off it so many times!
It makes me feel like I have the worst hangover/headache in the world and the acidity that you mention happens to me also, sometimes feel i can barely function! I'm taking Accord they wouldn't prescribe the liquid version as it's too expensive. My levels don't miraculously come back to life without medication low in range ft3/ft4 only just above range tsh, but I seem to feel even worse when approaching my proper dose!
I'm sorry I have no advice just wanted to say I'm pretty sure there's lots of us in the same situation with no advice or help from our gp's, if only we were classed as a person of importance maybe we'd receive the help we deserve. I'm only 38 and feel about 98 😆
Just try stay positive I know it's easy to say but it does help x
No don’t be sorry! It’s really good to compare notes I think!
High-ish testosterone could be PCOS (hard to tell without an ultrasound scan!) and I think low SHBG is often hypothyroid related.
What you’ve said about eating sounds so similar to me. I am often wretching in the mornings or actually sick (especially if I’m up early and trying to get on with things!)
Do you find all these symptoms worsen on levo? Do you get joint/muscle pains? I feel like my whole body is bruised on levo!
You should absolutely be able to try liquid levo - keep asking!! I got a trial but actually found it worse than the pills😬 but you never know!
Im the same the better my thyroid numbers look on medication the worse I feel! TSH at 1 on 75mcg and I was off work for the entire time I was taking that dose because I couldn’t function physically or mentally. I had issues with my speech and memory too. I felt like I was 100.
I feel like thyroid meds help my sluggish thyroid but then it makes my histamine issues so severe…it just gets worse the longer I take it and then the benefits of thyroid meds are far outweighed by histamine and severe inflammation.
Have you tried t3? NDT?
Also maybe try and get your female hormones checked if you think you might be peri! I read initially progesterone can be the first hormone to drop in peri, leaving estrogen higher which can trigger histamine/mast cells issues quite aggressively.
You’d probabaly have to do a alot of that privately though because NHS is so basic and does the bare minimum.
Im not prepared to accept this way of life. All people/patients deserve proper care, treatment or time no matter their status in society. Even private health care has failed me so far…
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Subclinical 
Levo and Carbimazole lowers digestive Enzymes?!
