Hi all, after 3 very unwell years I have finally been diagnosed with SIBO and histamine intolerance. I have Hashi's so docs kept blaming symptoms on thyroid (symptoms are similar - head pressure, severe fatigue, breathlessness, very unwell, tinnitus, back pain, dry mouth, tingling in lower legs, etc etc). Finally a smart doc diagnosed SIBO and low histamine diet is the ONLY thing that has helped with symptoms. Question is has anyone else with histamine issues had their thyroid meds make them feel worse - that is, make symptoms more severe? Doc mentioned T4 and T3 (synthetic meds) can actually raise histamine and make things worse... here's two studies that conclude same.
It's a pity that Natural Dessicated Thyroid Hormones have been withdrawn in the UK, without notice, and without any worries about patients feeling unwell or developing more symptoms.
The way decisions are made by those who do not have a problem with their thyroid glands and who make assumptions about what should be prescribed and how we should be diagnosed. should take lessons from our old-fashioned doctors who diagnosed without blood tests and knew all clinical symptoms and prescribed NDT (natural dessicated thyroid hormones made from animals' thyroid glands) They also removed this important replacement and safety well proven since 1892 and still does today.
They would save lots of money for the NHS if doctors diagnosed/treated us they used to do. Nowadays decisions seem to be made upon the result of the blood test alone and they do not listen to patients and, as the medical professionals now seem to be so poorly trained, that they cannot fathom out how to restore patients' health. Neither do they give a damn that they are destroying peoples health, employment and relationships due to their inept knowledge.
I don't have a problem with histamine intolerance but I was very unwell on levothyroxine -T4, improved somewhat on T4/T3. but recovered on T3 alone.
Hypothyroid people who take levothyroxine and it suits them and they feel well, they wont be on the internet looking for help/assistance.
I’ve wondered for years if I might have a histamine problem and/or SIBO. No-one has ever taken me seriously enough to suggest testing until just before Christmas when a functional medical person I’ve started working with suggested I do a SIBO breath test. I’ve just received the kit.
Some years ago I followed a woman - Yasmina Ykelenstam - on Facebook who seemed to have come to grips with the histamine issue. I learned a lot from her. Sadly, she died of breast cancer, but her family keep her website going:
I confess it didn’t occur to me that my thyroid meds might make other symptoms worse. For example, although my T4/T3 are now optimal, I’ve more energy, have lost weight etc, there are some things that have never gone, like tinnitus and back pain. I’ll be really interested to know where you get to in your investigations though, as shaws says, there is no longer a “natural” thyroid alternative.
Right now I am staying off thyroid meds - I cannot take any without symptoms intensifying but at least now I have an explanation. My integrative gastro in Los Angeles (who is top in field on SIBO/histamine and I am very happy with so far) believes my thyroid is running a little slow to accommodate how poorly my gut is functioning. My TSH is 2.7 - 3 (.5 - 4.5) and T3 and T4 are both only about 40% in range - so not great and I do think some of my symptom s are worse because of that. The plan is to heal the gut, reduce histamine and balance microbiome. I've been SO unwell (and tons of tests all normal) that I don't expect this to get better over night. My histamine symptoms are so hard to pin down because I don't feel them until maybe a day or two later (not uncommon). But keeping a daily log I can now see my worst days were from food/drinks the day or so before. Wine and chocolate are bad!
We usually feel better when our TSH if 1 or lower and our Free T4 and Free T3 are in the upper part of the ranges. You probably need an increase in dose (I must also state I'm not medically qualified but have found doctors know less than I do).
I wish you well as when symptoms resolve it's an amazing feeling to feel well again.
Shaws - New gastro says I must first heal SIBO/histamine/mast cell THEN we can look at a low dose of T4 and or T3 - but for now it raises my histamine and I feel too bad. Fortunately I can get by without the meds but pretty sure some of my fatigue is coming from low thyroid. Thank you I very much appreciate your input.
I feel very sorry for you as I know what it's like to feel so unwell and yet all of our old-fashioned doctors knew all the clinical symtoms of dysfunctional thyroid glands and there were no blood tests then (1892).
People had a trial of 'Natural Dessicated Thyroid hormones'.
I wonder if NDT would suit you ? (I am not medically qualified) but 'natural dessicated thyroid hormones made from animals' thyroid glands was the very first replacement from 1892 and is still in use today. Being made from animals' glands could this be more helpful as it isn't synthetic and has all of the hormones a health thyroid gland would have.
Unfortunately in the UK, it was recently removed from being prescribed. This upset many people and it was removed without notice to anyone. Levothyroxine is synthetic hormone T4 and has to convert to T3. I cannot take T4.
I believe Oprah Winfrey and Mrs Clinton have problems with their thyroid glands but believe they take NDTs.
Shaws - actually symptoms started abruptly 3 years ago when I first tried Armour (which my endo had me try due to constipation). So the only thing we can think is the Armour may have had something to do with triggering the mast cell issue, SIBO and histamine. For now I can fortunately do without thyroid med if I have to as I try to heal the other. Always grateful for your input.
Thanks I'll look up low histamine diet as it sounds interesting and I have some of your symptoms. I do wonder what your tsh, t4 and T3 levels are though as some of your symptoms do seem like they could be related to under medication. Are your levels high enough in range?
Hi JAmanda - my thyroid numbers are not optimal but I simply cannot take even a tiny dose as it will make my symptoms much worse. Right now working to reduce histamine, heal gut and my gastro says thyroid might start working better once body is more balanced. I sure do hope so!
I've read up on histamines and it's really interesting! I think it's the explanation I've been looking for for years regarding my stomach.
As to you and not being able to take thyroid meds, I found taking tiny doses of T3 across the day was awful, I constantly had ear pressure and headache but when I switched to taking a large enough dose all at once first thing in the morning I was fine. For me, I felt my body was just calling for a bigger dose.
But yes I read on here that people find it impossible to take t4 and T3 so I wish you luck getting there.
Hello Sunny3 I have been down this path, although I have had many gut issues by the time the SIBO test was performed it was negative (a decade after it began and following 6 months of fasting and barely any food). I went onto NDT as couldn’t get on with levothyroxine, although boy am I worried now. I used the low histamine diet and the AIP but arrived at just 12 items to eat that cause no issues. I’m medicated for MCAS, although getting the diagnosis on the notes everywhere is challenging (‘you don’t have anaphylaxis-like episodes unless you have been hospitalised with anaphylaxis, being taken to A+E in an ambulance doesn’t count’ ‘Surely there is a test for that’ ). I use querticin and vitamin C to help damp symptoms down and inject B12 (tinnitus-like symptoms gone). MCAS is well described in the GP EDS Toolkit if anyone else needs something to use with health care especially doctors.
Hi cwill! Thanks for the response. They say the SIBO tests are not real reliable so you could very well have it and just didn't show. I was diagnosed IBS-c 10 years ago and now SIBO/histamine - I think one is all related to the other but once gut bacteria is out of balance symptoms (not just gi-related symptoms) can become severe. My integrative gastro has just ordered several supplements for me to start - Quercetin, B1, B5 (low on both those Bs), some kind of Peptide, a detox and an antioxidant modulator. Will be starting those next week and hope the light at the end of the tunnel gets bigger - but for me the low histamine diet has been an incredible help!
I have had Chronic Fatigue for 43 years started 1n 1977-thyroid was not mentioned until 1991. Given RAI in 1994 made me a lot worse . I have been on T4 since then, definitely not made me feel better and have experimented with NDT and T3 still with no improvement and at times made me worse.. I have recently seen a Functional Medical doctor privately who carried out many tests and the most outstanding positive was a very high Histamine reading of 10 range <1. She is the 1st doctor in 43 years who has mentioned or tested Histamine.
Here is the written explanation of causes of high Histamine.
The cause of Histamine overproduction is either through the diet or decreased breakdown. The enzyme that is integral to histamine breakdown is diamine oxidase DAO. FAD is a cofactor to DAO.
FAD is controlled by the thyroid and depends on Riboflavin ( Vit B2) deficiency. Deficiency in this enzyme will cause problems upsteam. My blood tests confirmed I had Vit B2 deficiency. There has been a thyroid dysfunction all along but never mentioned until 1991 and when treated with RAI and Levo no improvement or made worse. Doctor seems to think that as thyroid problem appeared suddenly this is due to viral infection. Infection can interfere with FAD production.
Another significant symptom is brain fog. This can be caused by generalised inflammation. Inflammation is confirmed by Homocysteine levels which are high at 39 range <10. I therefore need Vit B2, B12 and folate as these all showed as low in my blood tests.
I started treatment in the last week on a very restricted diet excluding tea, coffee -now drinking hot water only. As much fruit and veg as possible- removal of all processed foods- and top quality B Complex- Magnesium-Omega 3 Fish Oil. This treatment will go on for 4 weeks and if there is no improvement then unlikely to be Histamine so doctor will explore something further upstream.
I hope this is of some use to you and that you can find someone who can help you.
delboy25 - very useful and thank you for sharing. All very interesting I did not know about FAD, so good info. Sounds like you too have dealt with many issues for a long time and I hope you are on the right track now. I have learned that Folate and B12 increases histamine and I am not able to take either without my symptoms going off the chart. So watch your symptoms as you try it! I too have high homocystein at 17 doc things it is just general inflammation from SIBO etc. I have many symptoms that are thyroid related but have improved on low histamine diet this last month (flu like fatigue, head pressure, achy, - as well as hives, palpitations, puffy eyes on and on....) hoping if I get SIBO and histamine under control things will improve. Good luck to you!
I have tried several different types of thyroid meds available and unfortunately they are all being blocked by the histamine. So I’m currently left hypothyroid and this has been 17years now. I have been to see so many Drs over the years and have just been diagnosed with high histamine. I’m taking T3 only and this is also blocked but I’ve noticed when I increase the meds my histamine also increases. I tried to come off thyroid medication but fell into difficulty at 10 mcg of T3.
I am also on a low histamine diet but this is of no help.
The histamine has caused asthma. I have seen many Drs due to breathlessness and coughing just to be told nothing is wrong but the last x-ray has shown my lungs are very large!!( I have never smoked) this has come as such a shock to me. They now say that untreated asthma can cause this problem but I have done some research and now know that histamine can cause asthma.
Also my heart has been badly affected.
I have also noticed that my thyroid is starting to swell.
I really need to dampen the histamine response then perhaps the thyroid medication will work.
I have tried several anti histamine tablets and herbs plus diet but remain in this situation. I wished I had never taken thyroid replacement.
I’m in a vicious loop which I’m unable to break. I’m struggling emotionally and think I should just stop the medication.
I would greatly appreciate any advice you have to offer me. Thank you also for taking the time and trouble to read this.
Hi Tdhx - I just by chance read my old post and saw your recent comment. It sounds like we have this inability to take thyroid meds because of bad histamine flares! I have learned that if I avoid histamine foods AND avoid folate foods as I am also extremely folate intolerant AND I've added a tiny dose of T3 (2.5mg a day) most days I feel ok - not great - but I can get through them without the horrible symptoms of high histamine.
I've seen MANY doctors over the last 3 years with this and I have narrowed it down to two doctors I am working with. Once is a genetic nutritionist out of Austrailia and the other is a local MD/DO. They are both on the MTHFRsupportcom site.
My new MD/DO ran a TON of tests and found with a 24 hour urine test that I am very iodine deficient which is making my thyroid not function well. And that explains my thyroid labs are not good (TSH is at the very top of range and Free T4 and Free T3 at the bottom). You might want to get your iodine checked.
Also the genetics doc in Australia reviewed my genetics and explained I have three double positive FUT2 genes which means I cannot heal my gut without some supplements - H antigen issue. So he has been helpful learning why I can't heal as well. Not being able to methylate and detox is part of why I can't take thyroid meds as well as some other supplements.
Have you had any luck taking ANY kind of thyroid med? I have had luck with a tiny dose of T3 and even a tiny dose has made most days much better as long as I avoid histamine foods. I meet with both docs again next week so hope to make progress with how to best handle this.
Once I was diagnosed with SIBO and started low histamine diet it made a HUGE difference - it is unbelievable how bad histamine can make you feel!
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