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I’ve been told that you’re expert at knowing about histamine . Do you know of it can cause high ESR , pain and inflammation?
I have back & rib pain and ESR is 83.
Had loads of autoimmune blood test but everything is coming up negative
My free light chain me are above range for Kappa & Lamnbda but ration is ok. High IgA
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I think you may mean RedApple , as the member you have tagged has no posts!
Thank you .
Yes I did mean RedApple but couldn’t find them in the search bar.
Could you tag them for me please
130396, I don't know who told you I'm an expert on histamine, but they were very definitely wrong! 😊 I only know what I've learned by understanding my own symptoms, (which are typically caused by consuming various foods).
There's lots of information out there now around this subject, but as a starting point, you might find this Zoe podcast useful to watch The surprising truth about histamine intolerance youtube.com/watch?v=GZoHGWu...
thank you RedApple. Obviously I’ve been told wrong.
I’m just trying to look for reasons for my high ESR and the pains I’m getting.
Nothing is showing up on MRI or pet scans
Worth watching the video though, just in case it rings any bells
I have watched it thank you. I couldn’t find a connection as neither of the men mentioned pains
Just wondering if you've been checked for a urine infection?
I’ve had this problem for a few years
Just trying to think outside the box, how are you with eating oily fish and might your omega 3 level be low? There are tests available and if low can cause inflammation.
Which levels could be low? I’m not allowed to take omega 3 or have much oily gosh as my blood condition doesn’t allow it
I mean your omega 3 level could be low. Might be wise to still eat oily fish, we need it.
I’m not aware we can test omega 3.
As I said I’m not allowed to eat oily fish to often
If you’ve histamine I’d stay away from oily fish, seafood, tomatoes, strawberries, highly preserved foods etc. you need to heal gut first before introducing high histamine foods.
I suffer with it badly, full on disabling attacks so not sure how bad yours are. Everyone has histamines and drinking red wine etc, gives you red cheeks. Most people produce enough enzymes, mostly diamine oxidase (DAO to process high histamine foods.
Lots of things to learn, but it’s all about food.
Taking b complex and high B2 can help, digestive enzymes. Obviously I don’t know your full history of health conditions.
Oh and stay away from kefir and demented foods!! You’ll be on the loo all day.
Great comments but might want to edit this bit as I think you mean enzymes...
"Most people produce enough histamines to process high histamine foods"
and 'fermented' rather than 'demented' 😂
Do you have psoriasis or family history of them?
No nothing at all
'Do you know of it can cause high ESR , pain and inflammation?
According to my quick research:
High ESR is a sign of inflammation, and this inflammation can cause various symptoms which include neck, shoulder and muscle pain.
Unrelenting pain can also cause anxiety.
High ESR can be connected to autoimmune disease. Do you know if your hypothyroidism has an autoimmune cause?
Could it be that your thyroid medication doses are not right for you? Being on an inappropriate dose of T4 and T3 can certainly cause the symptoms you describe.
I notice in your bio that you take Nortriptyline for burning skin. Can you say more about this? Does the burning affect certain parts of your body only? Does the burning skin feel hot to the touch and look red? Or does it only feel as if its burning?
The ESR has been going up & up for several years. I do not hav autoimmune hypothyroidism.
I don’t have anxiety at all. I have got ET JAK2+ blood disorder. My free light chains are both above range but ratio is in range. I have above range IgA. My CRP is normal.
I take nortriptyline for burning skin which feels like bad sunburn. I’m told this is a form of neuropathy it is not hot to touch nor is it coloureds
I had breast cancer 30 years ago . Had 6 months of chemotherapy and 6 weeks of daily radiotherapy.
I read that histamine can cause inflammation and bone pain . I do sneeze a fair bit at night but have no other obvious symptoms.
I take T4 & T3 . As far as I’m aware my thyroid levels are good and I don’t have any hypo symptoms.
My last results were:
100mcgs levo plus 30mcgs T3
TSH <0.03(0.33-4.84)
Ft4 13.4(9-19) 44%
Ft3 4.62(2.6-5.7)64.36%
I take Hydroxycarbamide daily for. Y blood disorder
I'm thinking your fT4 is a little on the low side?
Have you any recent results for Vit D, folate, ferritin and B12?
Do you take a good B complex? As low B's are linked to neuropathy
My ft4 is at the level which suits me. I know for certain that it’s not ft4 causing the problem as I’ve had it at various levels over te years and the ESR always is the same .
I’ve had my B12 tested for MMA homocysteine I.F gcp all good vit D 135. Folate 17.8
I'm guessing the scans checked your gallbladder and liver, how are your liver results?
I’ve had my gallbladder removed 39 years ago. I had a scan which showed something to do with bile ducts but at the MDT meeting it was decided all ok
Other things flagging up with high ESR alongside thyroid are other autoimmune conditions Lupus, Rheumatoid Arthritis... how are your kidney results?
I’ve had all those tested and all are fine
Do you take something for your lack of bile?
I didn’t say I had lack of bile . I said I’d had my gallbladder removed and the bile duct was picked up for some reason but at the may they thought it wasn’t Bering treatment
Without a gallbladder to store the bile it inhibits the ability to react when an excess of fatty food would normally trigger a greater release no? 🤷♀️ That's my basic knowledge drained
I had my gallbladder removed years ago and stay away from fatty foods anyway, mine was unusual and caused by calcium stones. Most people have theirs removed due to cholesterol stones.
The bile is still in the liver anyway.
I do have bile in my liver though and I do not eat a lot of fatty foods either
I was going to suggest looking into TUDCA and or L-Glutathione
...does it matter about t4 level if t3 is ok level. Surely it's how you feel🤔. Good t3 level which gives wellness doesn't it
For most of use yes it really does or we'd all be on T3 only... absolutely it's about how you feel, when I added T3 I thought T4 was redundant but OMG did I feel awful when it dropped below 50%
I don’t feel unwell thyroid wise
But it effects everything so hard to rule it out as less than optimal?
What do you mean - less than optimal?
Could possibly be fine tuned
What does that mean in relation to my post?
My histamine intolerance is much less of an issue since I have optimised my dose/ timings
My levels are pretty good & I don’t have hypo symptoms
Ok, perhaps take a look at the MCAS forum
Is there a MCAS forum on HU?
Are you saying it matters you take Levo T4 or it matters what your t4 result is?
Why do you think you need t4 Levo if you take T3?
Both, you can't maintain fT4 without taking T4?
My experience when adding T3 (self sourced) I felt a massive improvement and then when seeing the NHS Endo she wanted me to reduce my T4 and T3 though both mid range, I spend about 10 weeks on a reduced T4 dose (fT4 dropping from 55% - 24%) having maintained my T3 dose and gradually deteriorated to the point I could hardly get out of bed again, increased then T4 back to previous dose and it took 4-5 months to climb back out of that hole and really kicked of my adrenal fatigue, I now take slightly more T4 than I did before adding T3
Some people need T3 only but I'm not one of them and it would seem the majority of folk on this forum who need T3 also take T4 🤷♀️
Iv read you do need some t4 Levo with t3 but no reason given
Cup-cake7 'Iv read you do need some t4 Levo with t3 but no reason given'
The aim of thyroid hormone medication is to replace the hormones that a working thyroid would usually produce. Which is both T4 and T3.
Yes. 🤔 so are you saying your t4 is still concerting
'Converting!'
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That’s ok taking both providing you are converting ft4 to the active ft3
A healthy thyroid would normally produce both along with lesser amounts of T1 and T2 so it seems more sensible to replicate this rather than only T4 or T3 which is maybe the better way to look at hormone replacement
That’s fine if you convert t4 to ft3 adequately
So do you take T3 only?
No combo t4 t3
Agree . I’m not bothered about ft4 level. When it was higher I had high rt3
How did you test rt3
🤔how do u get rid of it?
I had blood tested for TSH ft4 ft4 & rt3. They all have to be tested from same blood draw .
When it came back high I reduced my T4 but kept t3 the same
Thankyou. Did you continue on same lower dose?
"I had blood tested for TSH ft4 ft4 & rt3. They all have to be tested from same blood draw .
When it came back high I reduced my T4 but kept t3 the same"
Did you feel better for doing this?
Hi 130396, I’ve read through your post and responses and I might be able to suggest some things for you.
I have a condition called Mast Cell Activation Syndrome (MCAS) and before I was diagnosed my IgA and ESR were both elevated too and I had every test under the sun apart from the one that would have showed this condition.
But to be fair, even when I had this test, it came up negative which is often the case for this syndrome according to my specialist.
It is completely related to high histamine because the mast cells - part of your immune system - break open specifically to release agents like histamine and leukotrines when something goes wrong and your body needs to fix something - like a bite or a sting. This is the reaction that creates the raised red wheal around the area telling the rest of your immune system to go and fix this.
But with MCAS, your mast cells go a bit bonkers and break open constantly at the slightest irritation, or for no reason at all!
Triggers can be being too hot, too cold, stress, exercise, eating the wrong food etc. For example, a lot of ‘healthy’ food - like citrus fruit, bananas, avocados, tomatoes etc are high in histamine or release histamine in your body.
Symptoms can include extreme fatigue - not helpful with thyroid probs anyway - skin rashes, gut problems, inflammation, joint and bone pain, extreme reactions to insect bites etc. It affects every organ, so you can also get random heart symptoms, brain fog etc. I have had back and lower rib pain with this, almost like a cramp.
Before I bore you any longer, does any of this sound relevant? If so, I’m happy to have a chat. There is a form of this that involves protein deposits too.
I’ve had to work out so much of this for myself as it is a relatively rare condition, so the medics don’t have much of a clue unless they specialise. But the new thinking is that they believe more people have it than are diagnosed.
Happy to discuss more if any of this resonates.
Hi thank you for all that. Yes it would be good to have a chat if you have time. Please message me when you have time .
ironchica 'Happy to discuss more if any of this resonates.'
Rather than chatting one to one, maybe you could consider starting a brand new post about this. That would be potentially helpful to many others on the forum.
Hi Ironchica,How interesting, so prior to my very late diagnosis of Hashis I suddenly started having a severe reaction at work and several trips to A&E with coughing, eyes swelling, burning etc.
I was fast tracked to a consultant dermatologist and after doing an extensive patch test diagnosed me with a severe fragrance allergy.
It was triggered by a new young employee who soaked himself in cologne mainly because he smoked I believe. he was a nice chap btw.
My employer - the NHS eventually forced me into early ill health retirement.
This was all prior to my Hypothyroidism being diagnosed after months of asking for tests in fact years.
Apologies for the long winded story but I was told there was no treatment and so many friends have asked why I was never given an Epipen.. My GPs are not interested and said I'm not suitable.
The reason I ask is because I'd really like to travel.
Kind regards
Hi Totoro25, yes perfumes and scents are also definitely a trigger for this. I struggle even if someone is wearing strong perfume and I walk behind them in the street and catch a cloud.
I’ve moved tables in restaurants many times for the same reason. The one thing I would suggest as RedApple has kindly pointed out that I should give more info generally on here and possibly another thread, is to look at tmsforacure.org which is where I discovered most info that allowed me to find out how to get diagnosed and then work out how to function properly with this condition. 🙏🏻
I don’t have an epipen either. My specialist said I should have one, but that ‘you won’t get one’. So I guess it’s a thing.
Yes to all of the above and thank you for your response.. I'll take a look at the link. 😊
Hi IC, I've just had a look at the link, thank you it sounds like I now have a proper term for my condition other than a fragrance allergy.I was prescribed elidel ointment and hydrocortisone for my eyes, I was curious to know what were you prescribed if you had a similar reaction?
Kind regards
Only if you're comfortable sharing obviously.
Hi Totoro, happy to share - but I’m afraid it’s a super long list!
Every reaction with MCAS varies. And it often depends for me what else is going on in my body. For example, if I have a reaction to food or getting too cold, then a scent reaction would be more acute as I’m already in an overloaded situation, if that makes sense?
With this, it’s almost all about prevention rather than reacting to reactions. So, I use Azelastine every morning and evening for my eyes, Flixonase as a nasal spray.
I take the maximum dose of Fexofenadine which is 540mg per day, plus a mast-cell stabiliser called Sodium Cromoglycate. All on prescription, as well as other meds for other conditions which co-exist with this unfortunately, including heart meds, pain meds, high dose Vitamin D3, Quercitin and Vitamin C from Holland & Barrett, which are both also mast cell stabilisers.
It adds up to an awful lot each day to be honest, but I’ve trained myself to take meds in handfuls of up to 13 tablets in one go so I ‘feel’ like I’m taking less. Psychological tricks of course.
If you think this might be what you’re suffering with, I would speak to your GP first and get a specialist to look at the symptoms. A dermatologist is fine, but they would need specialist knowledge of this otherwise they wouldn’t clock it.
I’ve collected various specialists over the 8 years since I found out I had this, but my life now is chalk and cheese from where it was. I used to not be able to function at all. Now I live pretty normally and just have to be super strict on what I eat, drink, use as soaps/shampoos etc. I’m even allergic to alcohol so can’t drink wine etc. Not that I ever have, it always made me feel rubbish with none of the ‘joy’.
Hopefully this is helpful though.
Hi and thanks.. gosh that's a lot of pills! 😱As far as I'm aware it's only chemicals obviously thr man made toxic kind like perfume, scented everything etc
So I was diagnosed by a Dermatologist but when you say a specialist do they have a title or is it a Dermo who has a specific interest?
Apologies for all the questions.
Kind regards
Not a problem - they would need a special interest. But also you may want to look at an immunologist with a special interest too. That’s what I did and how I got diagnosed.
If you only have chemical reactions that affect your skin, it may not be relevant. But if you have other symptoms - gut problems, brain fog, inflammation etc, then it would be worth considering a wider review.
Another post today , but about iron, by PaleoGirl, mentions she takes Ancestral supplements which are helping her iron. The beef organ one is DAO, which RedApple's Zoe video information video, states, helps process histamine. Have you , by any chance tried the DAO products from Ancestral Supplements? Amazon has very mixed reviews on them, but some of them are excellent.
Thank you for your post, which really resonates with me. The "I have had back and lower rib pain with this, almost like a cramp" resonates , and I wonder if the DAO product above could address the problem, as well as helping greatly with maintaining iron levels.
Hi Wua, I have tried DAO, yes. This was one of the first things I did when I was trying to lower my histamine through diet before I was diagnosed.
I found it to be OK, but it didn’t solve much for me unless I had something by mistake with high histamine. At that stage, I was much less aware of what I needed to avoid.
When that happened, the DAO helped to ‘mop up’ the extra histamine my digestive system couldn’t deal with, but it took me back to the base level I was at previously, which was still super high, but didn’t seem to reduce my overall level. I think that’s because it is specific to your gut and is naturally occurring in our systems, but when you get to a stage of overload, as I understand it, the DAO just can’t cope with the extreme levels.
For that, I had to move to the super high dose antihistamine, while also avoiding triggers and eating a fully low histamine diet. There are two types of antihistamine - H1 and H2 - and the H2 one works within your gut and intestines. I had a lower left abdominal pain for around 20 years almost constantly, and only when I took an H2 antihistamine did that go. I no longer take this though as I found once I got the diet fully under control, that was less of an issue. That might be worth discussing with your GP if you think it may help?
But it was only when I got to the point of taking mast cell stabiliser meds that things really changed more widely for me.
With the back/rib cramps, I still get those on occasion, usually when I lie down. But it’s rare now, whereas it used to be more regularly. I personally don’t think the DAO would have made a difference to me with this, I can’t honestly remember it doing that.
I think addressing the whole body more holistically in this regard helps more. For me, if I feel rubbish or have reactions then I find I get this cramp more.
Re iron absorption - my gut is generally badly affected by the MCAS, so I struggle with absorbing all vitamins and have found that at times I’m better taking digestive enzymes to help with that more generally.
Lots of info here and possibly some that isn’t useful, so apologies if that’s the case. And this is all my personal experience too. Different MCAS sufferers have very different triggers and symptoms. So if these things resonate then I would investigate further for yourself. I’m always happy to answer questions if I can though, but it is so very different for different people.
Thank you for explaining. I hadn't realised that there were 2 types of anti histamine. Is there a specific digestive enzyme you find you prefer? The H2 anti histamines reducing stomach acid seems counterproductive , as when hypo we need stomach acid. Gluten free is something I really should try, but so difficult as my bowel reacts very badly to anything gluten free. Tried the "Promise" bread, and definitely does not agree with me, though tasted nice enough. The DAO per Zoe had sounded promising.
No problem at all. Yes agree re stomach acid but I guess it’s a question of which problem to solve and in what order - at least it was for me when I was using them. I didn’t need them for long thankfully.
Re enzymes - I actually use the Holland & Barrett own ones as I’ve found they seem to have a good spread of enzymes to cover different foods for the price. But it is probably horses for courses as I’m sure there may be others that work equally well.
I’m gluten free, and also have to avoid milk as I’m allergic to the A1 protein in regular milk (which isn’t in Jersey cow milk). I also avoid eggs and yeast as I found they make me feel rubbish and cause a lot of inflammation for me. If you can go GF even for a short time, I’m pretty sure you wouldn’t look back. But it is hard for sure.
Often the processed GF products are packed with other stuff that is unlikely to be helpful to people who are sensitive to various food products. As much as possible, I try to eat foods that are unprocessed and you wouldn’t find in plastic in the wild, so to speak. So lots of veg, fish and some meat, nuts, chia seeds (high in protein and great if you mix with water as an egg substitute for binding baked goods) plus nut and oat milks.
Please don’t let me put you off trying DAO - this was just my experience and my situation is very specific with the MCAS, so do consider giving them a go if you feel they will help you.
Hope this helps. 🙏🏻
Hello 130396. You might want to research a levothyroxine metabolite: 3-iodothyronamine (3T1AM). Try googling: "T1AM and histamine" or "T1AM and mast cells." Everyone here should google "T1AM and dopamine." T1AM is a naturally occuring amine we have in trace amounts, but when we take levothyroxine orally, our digestive system makes excessive amounts of T1AM and it sticks around. Research articles call T1AM a brake on the adrenergic system, and it's well known to lower body temperature and lower pain thresholds. Confoundingly, many researchers seem excited about this. I have loads of pdf articles on T1AM if there's any interest and way to share.
Does that relate to high ESR inflammation and pain?
3-T1AM 'I have loads of pdf articles on T1AM '
You cannot directly share PDFs through the forum, but please do post links here to the online sources for these articles so that others can read and download them.
3-T1AM , However, whilst articles are potentially useful and of interest, they do not in themselves, help a patient who is dealing with the symptoms.
So, the obvious and most important question, is what, if anything, can we patients do to help ourselves, if we are dealing with this on a day to day basis?
I am dealing with day to day pain
'I am dealing with day to day pain, As are many of us, so we really do understand. We are all searching for the answers that our doctors do not have.
There is a considerable number of compounds derived from thyroid hormones which are almost always totally ignored. And about which we know far too little.
I don’t understand anything that’s in the photo. …. I’ve been hypo for 40 years
Our thyroids produce T4 and T3 - and they then get processed into various other substances.
The effects of these are largely unknown and too little researched.
3-T1AM mentioned just ONE of these substances. I wanted to point out that there are many of them. It is very easy to see one thing and ignore the dozens of others.
You can safely ignore my reply. 
Quercetin is anti-inflammatory, anti-histamine, and a jak2/stat3 inhibitor. Helps with inflammatory and neuropathic pain.
Does that mean it’s not contraindicated using with my warfarin and daily Hydroxycarbamide?
There’s so many things I can’t take !!!
Quercetin as you thought is not generally recommended as high dose supplements with Warfarin because it can increase the side effects of warfarin and increase bruising and bleeding times.If you have MCAS or histamine related conditions you do need to be careful of the antihistamine options that you choose because many antihistamines also interact with Warfarin and certain other anticoagulants.
It's best to arrange or get approval for your antihistamine therapy if you need it with your GP.
As you say there are many supplements that people recommend and are great to use if you have one particular condition or aren't on a complex combination of medications but they aren't suitable for people on certain medications or with certain cardiac , kidney or liver conditions.
Sorry for not answering post extremely down 👎 these days and will post as soon as I can. Have a pleasant day all despite illness.
Would you mind saying the conditions you are already being treated for and which medications you take altogether in a reply.It would help before suggesting things because there are many supplements that could interact with your medications.
Some of your medications could be adding to your symptoms.
Even if you have histamine issues or MCAS they may not necessarily be the cause of your pain and inflammation the specific area you have it.
Had they ruled out costochondritis, any cardiac or blood pressure issues you may already have, or reexamined your bile ducts and pancreas for a potential cause for the inflammation and pain.
What type of neuropathy were you diagnosed with , this may be contributing to you problem.
It's probably better to avoid the Zoe rabbit hole before you've established whether their could be a more likely medical cause , which may not be autoimmune or thyroid in nature.
Blearyeyed 'Would you mind saying the conditions you are already being treated for and which medications you take altogether in a reply.'
Assuming you are replying to the OP Digger031145 , they have posted this information already on this thread in this reply right here healthunlocked.com/thyroidu...
Yes , I saw that but later on in the replies the OP mentioned they were taking Warfarin which they hadn't mentioned originally. As they said in that later reply there are so many things they can't take.Many medication options and supplements that people may suggest are not suitable to use if you take Warfarin and people may not realise that.
It also could mean that the OP was also taking other medications as well that would be contraindicated with suggestions of OTC histamines or supplements that might be suggested. This was why I asked.
I have similar issues to those being discussed including having had my gall bladder removed 10 years ago and a diagnosis of MCAS but I also take cardiac medications which require more consideration in my options for antihistamine treatment.
That's why I asked as it's often helpful to see what combination of medications or conditions someone has before answering so we don't accidentally suggest something which could have side effects for that individual even if it's fine for people whom may have thyroid issues and just take thyroid medications.
Blearyeyed 'It's probably better to avoid the Zoe rabbit hole'
The Zoe podcast was posted here as a source of information as the OP asked about histamine. It was not intended to send the OP or anyone else down any rabbit hole.
I haven’t had a firm diagnosis of neuropathy but on a 61 week waiting list to see neurologist. As you didn’t tag me I didn’t know this reply was for me.
I take levothyroxine liothyronine Hydroxycarbamide warfarin vitamin D magnesium nortriptine folinic acid
I have ET JAK2+ . Non autoimmune hypothyroidism blood clots in lungs
Digger031145 , This thread has become long, confusing and difficult for anyone to follow. I strongly suggest you revise your bio to make sure that all relevant information is included and up to date.
That said, please also remember that this is a patient to patient forum. No-one here can be assumed to be medically qualified to answer your question, especially give your complicated health journey.
I am closing this post to further replies. But please do feel free to start a new post once you have made sure all relevant and accurate info is in your bio for members to refer to.
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