Hi... If you've ever seen my previous posts on here you'll know how chaotic, desperate and confused they were.
Please before anyone admonishes me for not taking thyroid hormones and allowing myself to get to where I am now, you need to understand something about my situation. I came to develop this extremely bizarre problem with taking any pill/supplement/liquid medication which is maybe related to my MCAS (I'm on a very limited diet because of this) where within a few seconds of taking my face swells up and it feels like someone has pumped my brain up with a bicycle pump - like a histamine reaction but it doesn't go away after a few hours, it stays all day and it's unbearable neurologically. Every time I have tried to push through it, the only effect I get is this and there is no benefit felt from the thyroid medication. I have tried all forms and both hormones and it doesn't even matter i take levo at night - it's the same bizarre awful reaction. No doctor has been able to explain what's going on.
Because I couldn't get my meds to work I was going down all sorts of rabbit holes on the functional medicine side of things, but now I am severely sick and completely treatment resistant and in desperate need of working thyroid replacement- it's the only way. But there's no way of getting these hormones in my body unless it's in a non oral route that I can tolerate and respond to. Unless by some miracle someone can figure out the medication anomaly and treat that- but how would they?
I am a 'normal'. I had to move back to Ireland really hastily last year after receiving the official hypothyroid diagnosis from a private endo in London, and I thought I would be able to figure out my problems at home. I've seen 2 endocrinologists here and one a thyroid 'expert' who told me to see a psychiatrist. Her answer to my puffy thyroid face when I challenged her was 'I don't know.' I'm sat across from the second endo yesterday and walked at the pace of a 90 year old woman into his office (I'm 29) and described my severe drowsiness, pervasive weakness that feels like I'm made of paper, rapid weight gain and the puffy face. He treated me fairly and like an unwell person rather than a mentally ill person, and allowed me to talk about everything I've read, about cell metabolism etc, and said he's not ruling anything out but the symptoms are so 'non specific' (they never even ask to see photos of the face like this isn't an important and disease specific criteria) that maybe it isn't my thyroid - and they never even give a differential diagnosis for this collection of symptoms, when, put together, spell hypothyroidism undeniably.
His hands are also tied because while no one can or will confirm the diagnosis, no one is going to give me IV hormones which I really need, unless I'm in myxedema coma. He advised I might have better luck in a different country and he could help me find someone/somewhere appropriate, maybe back to the original endo there and to hook in with the NHS hospital he practices in (only if he could confirm the DX). I have no idea how I would be able to travel to do this in the way I'm in now. He took my bloods again on both assays and arranged a follow up in 3 months time.
I am at this stage very mentally unwell from lack of thyroid hormone and my speech is coming out slowly and strangely. I look so, so ill. I've been housebound for 10months now, because of lack of mobility and severe fatigue. It's 2.5 years since the disease began. I've been feeling for months like surely a crisis will unfold soon, because how can my body keep up with this level of sickness, but I've been deteriorating so slowly and hovering at this same horrendous stage. My 60 year old parents are caring for me and having to make me meals because I'm that debilitated.
I've been doing well at staving off the suicidal thoughts lately but after that yesterday, that I waited months for after seeing the first endocrinologist, I'm haunted again. I feel completely doomed and hopeless. I have lost the amazing life I had to this disease, suffered profoundly, and I am a second class citizen within the field of medicine. I know it's awful to do this because you don't know what's going on in people's bodies, but every time I am at the hospital I look around and think that at least visibly, I am the sickest person there. Everyone else bouncing up off their chairs to go to their appointments, healthy skin. I am literally yellow and walk like a snail. People stare at me.
I've spent time thinking about the past and how before TFTs were invented they would have suspected hypothyroidism on my clinical presentation alone and would have been injected with sheep's thyroid. And now my clinical presentation doesn't even seem to matter and wouldn't grant me access to an injectable thyroid preparation until my life is threatened.
Please don't say anything unkind, I really can't take it right now. I have seriously done everything I can and tried and tried with the meds. I can't see a way out of this.
I'm sorry this is so dark, I just need to talk to people who understand.
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I can relate and empathize with everything you're saying. I've lost several years of my life and often wonder who and where would I be in my life if I didn't have this disease. I was so functional and normal before it all happened. I used to travel all over the place. Since 2016 it's been really downhill. I had half my thyroid removed when I was 27 back in 2007 and two years later I was put on thyroid hormones. 6 years later I started developing all these debilitating symptoms. I had several days where I couldn't get out of bed, couldn't exercise, brain fog, terrible vertigo, fatigued all the time, extreme body weakness. I used to tell people it felt like I was slowly dying and that I felt like a 100 year old woman rather than someone in their 30s. I couldn't rise from my chair without looking like an old granny and when I walked it affected my gait. By 2019 I could no longer lift my arm due to severe pain in my arm, wrist, and neck. The fatigue and weakness was disabling. It made me so ill I was barely eating. I had to take off of work all the time and finally had to go on a full medical leave in 2020. I spent Christmas 2019 in bed on steroids and my 40th birthday in bed. For the past 2 years on my leave from work I've been mostly housebound. I watch everyone around me living their lives. There isn't one day I go to sleep and wake up feeling normal. Over the past 2 years I've had to constantly try different meds, raising and lowering and during this time my face, wrists, and hands swelled up so bad. When I wake in the morning my face looks like a big swollen potato. I've spent so much money on doctors and prescriptions and burned through all my savings. One Dr even told me I had "a problem" and that I should see someone about it. It's good to vent this out online because I don't like to say anything to my healthy friends. We all try not to have dark thoughts but given what you have to live through daily it's natural. Take care and thanks for sharing.
I really appreciate you sharing your struggles. It’s been such a long road for you and I’m so sorry that you have to go through this. It is a disabling condition for a subset of us and no one can prepare you for a change like this. We’re just living on the fringes.
I feel like I’m slowly dying too. I wish I had the answers to help my own situation but it’s so unique that I simply don’t know where to turn or how and I haven’t a single doctor on my case at the moment. We’re all so different.
Thyroid disease is life altering and can be debilitating and disabling for a lot of people and affects us in different and unique ways. I still don't fully understand what's going on with my unique situation but I just keep trying and trying to find something that works. Healthy people have no clue just how lucky they are! In an instant anyone's life can be turned upside down by a disease or illness and it seems most of the time you're on your own trying to find a solution because Drs have no answers. So sorry you're going through all that.
Hi SlowDragon, I’ve reacted to every anti histamine I’ve tried and seen an immunologist, hence I don’t know how anyone can treat the bizarre issue if it’s the case that I literally react to all oral medication in this same way that lasts the entire day. My vitamins are fine, and I cannot take any supplements for the same reason. I cannot tolerate levothyroxine at all with this issue at play, it’s intolerable and one could not persevere with it. I can’t explain it well but it’s unbearable.
Can you share your results for key vitamins (folate, ferritin. B12 and vitamin D)? When medics say they are ‘fine’ this invariably means ‘within range’, which may not be optimal. Having these vitamins high in the range was key to me regaining my health and allowed me to tolerate thyroid medication better.
Thanks, I appreciate it but I know this, and by fine I mean optimal. Although I would need to look for the folate result to check because they were ages ago. But there’s no way of me getting any vitamins into my body because of this extreme problem with taking pills - it happens even with supplements with no excipients. Unless I went to get one of those vitamin drips which I don’t know is safe for me.
Have you considered suppository? Probably not pleasant, but if nothing else is working and they won’t offer you IV, it’s definitely worth a try. Apparently any pill can be given rectally. As there are certain patients that can’t take medications orally
I’ve definitely read about this but no one has offered it to me in this country so I don’t know if available. I’m also quite sure I need T3 as well and don’t think it comes combined. The only thing I can think to do is contact my London endo and ask if he knows if anyone has ever treated cases like mine. There’s many case studies from different countries where IV hormones were used for refractory hypo (usually absorption issues) and I believe in special cases in the UK it’s licensed for this purpose, but as a ‘normal’, unless an endo can confirm the diagnosis they won’t do anything.
Hi Thyroidfun, You sound like you are going through hell, it may be a long shot but your colouring is pointing to jaundice, which can be many different primary causes but affecting your billirubin, has anyone looked at your liver function at all as your reaction to medication may be not being able to metabolise. Another possibility is a type of autoimmune anaemia, had anyone looked at your red blood count? Your issues are complex and Sympathise.
I have hypothyroidism and earlier this year felt dreadful and turned a yellow colour with no energy, fast heart rate and low blood pressure, it turned out my haemoglobin was being attacked by my own body and I was ready for a transfusion before being seen by an haematologists, managed to avoid this by commencing steroids.
This is a really interesting reply, thank you. I wouldn’t go as far as to say I look jaundiced but a sickly pale yellow as a result of carotenemia. Not the colour I was born with anyway. I’m pretty sure I’ve had all of these tested - like ALP, AST, ALT, bilirubin. My ALP is usually low or low in range, my globulin is also low. I wondered the significance or if this is just to be expected in someone with hypothyroidism. RBC is looking fine.
Glad you’re feeling better and got to the bottom of it
In someone without issues, some carotene gets converted to vitamin A. But impaired ability to process carotene can result in both carotenemia and low vitamin A.
It is so awful to be ill & trying everything under the sun and getting nowhere. And then getting suggestions we have already looked at, at length. You just want to be well.
We all feel your helplessness and frustration with doctors, as we have been there. And your situation has extra frustrations to face.
Thanks for your suggestions. My B12 is actually great, I think it is hypothyroidism itself yellowing my skin and the inability to process carotene that happens in the disease as helvella said. I’m unfortunately way way beyond acupuncture being helpful (I have tried things like this before I got housebound sick, and maybe at a later date for MCAS it could be an adjunct therapy) but first I desperately need hormones in my body.
All the best to you. Please know I know you have it pinpointed & it is serious. My acupuncture suggestion was not to demean the seriousness of your issue at all. And what medical intervention that you obviously need.
We are all obviously out of balance in our bodies, with what we are facing. Acupuncture assists with that. I have never tried it, in addition to procedures & the medication, but absolutely will when I have the finances.
All the best to you with getting the medical help that you need..
Thanks so much for your empathy. No offence or demeaning intention taken at all. What I meant was at this stage my body is so depleted that acupuncture would make me worse right now (let alone whether i could make it to the appt) but I’m open to anything helping me as long as it’s at the right time and in the right order.
Yes!! I’ve read so, so much by now. It’s like a vicious circle at this stage because I need robust thyroid hormones to begin to heal my MCAS. And it only started 8 months into hypothyroidism- I could eat anything before that. Even my immunologist agrees that allergies can become a lot better when thyroid is treated. It’s another telltale sign that should be screaming in the face of the endocrinologists.
It’s really strange though because my other MCAS reactions although involving a lot of swelling and neuro symptoms, would resolve within hours or half a day. But with pills/meds, this effect is more extreme and lasts the entire day, I can’t make sense of it.
Have you seen the posts on here by Chouchou1234 . From what you describe it sounds as if she reacts the same way as you, but doesn't understand what is happening to her.
Had a look at her posts there. Sounds like she’s in an awful way too but I don’t think the swelling described is the same. Honestly I’ve never heard of anyone experiencing the reactions I’m having that last the whole day and make you feel like this, I’ve tried to Google it and nothing. It’s so hard to describe but it feels like fluid that comes up from my lymph/behind ear (i can kind of hear it if that makes sense) and surrounds my face and brain. But it’s not drainable - it’s like pressurised air. Affects me neurologically like all my senses are heightened and I feel like I’m going mad. You couldn’t possibly push through it- and even when I’ve tried I get no positive benefit from thyroid meds only this awful side effect (but that’s with any med or supplement at all).
I had great difficulty tolerating thyroid replacement at the beginning, to the point where taking levothyroxine felt like I was being poisoned. So, briefly, things that helped were.....
Using desiccated natural thyroid to stave off total shut down but only up to the level that is safe and comfortable for the excess T3 that is in that, which ,means there won't be enough T4 but it was better than nothing.
Anti-histamines! And something called DAO in case you have DiAmine Oxidase (DAO) enzyme deficiency (google around that one -there have been some studies on mice that showed that anti-histamines moderated the adverse effects of synthetic (exogenous) thyroid hormones. So it was a long shot but it worked for me, placebo or otherwise it doesn't matter, it helped. ) Anyway both simple over the counter anti histamine and a more expensive web sourced DAO supplement helped me tolerate levothyroxine but only in small doses......
Never take more than 25 micrograms levothyroxine at one go and try to take doses at least 3 hours apart up to the amount that eventually would replace what you need (which is what makes you feel sufficiently better to put up with any side effects or inconvenience.
After years of research and trial and error I figure that the most likely cause of levothyroxine sensitivity/intolerance/adversity is that too much of it in ways our body isn't used to can destabilise parts or all of the thyroid hormone system and in excess (not in relation to what you need every 24hrs but how much your body can manage in a single dose) is known to reduce T3 production in the cells via established negative feedback pathways that may be more sensitive or critical for some people (me for sure).
I have eventually been able to stop using T3 and desiccated natural thyroid and can produce enough T3 from 5 x 25 micrograms levothyroxine a day at 4 hourly intervals, your needs may of course be different but the point is that I went from despair and fear of taking thyroid replacement to now managing it almost like sugar ie it's essential but in small regular doses and too much at once causes significant complications and potential long term adverse effects. So now levothyroxine is simply part of my diet and I feel mostly 100% normal!
Hey thanks for your response. I’ve tried all of this, Armour, antihistamines, DAO - it’s not that I’m sensitive to thyroid meds, it’s that this extreme unbearable reaction occurs when I take meds or supplements (anything that’s a pill, or even a liquid) so I am actually reacting to the antihistamines themselves (even when they are compounded with no additives). I’m at a loss honestly.
I think it’s a very unusual and complex issue that I don’t expect anyone on here to be able to solve- there’s nothing I can do for myself that I haven’t tried and my doctors are taking no responsibility for my complex case so I am utterly alone.
Hi, sorry you are having such a rotten time. You may already have spoken to her, but have you tried Micki Rose at Pure Health? She ended up down to fewer than 20 foods, horribly reactive (even to water) and also has MCAS. I think it would be worth contacting her. She isn't taking on or seeing people but can be consulted by email. I have found her really helpful. purehealthclinic.co.uk/about/. Best wishes
My pleasure. I did some of my testing through her site and then paid for a report on the results plus I have her books on gluten (vast and hugely helpful) and chronic health. She does a list of supplements that have been checked/trialled and don't have corn and other problematic stuff and I don't use anything that isn't on the list - too much money wasted on stuff I can't tolerate. The site is vast with lots of free factsheets as well as the paid things. Hope it helps.
Thanks so much for that Information. I haven’t found a functional doctor here in Switzerland yet that treats MCAS ( only an allopathic one, but at least he has run the relevant tests and I have an official diagnosis, which is a relief. I have also found Beth O‘Hara‘s website hugely helpful: mastcell360.com
I thank you for this post. I am on 225 mcg of Synthroid (two times 112 mcg) and it is hell. I felt fantastic at 112 mcg but my numbers were crazy, put up ad up and up. So although I have taken two times a half dose (awful!) I might just try eight parts. There is no way I can keep it away from food, but let me see how that goes. Thank you for sharing.
I don’t worry about proximity to food/drink, it averages out if you’re a mindful about leaving an hour or two between things and sometimes you can’t. I have been known to take levothyroxine with coffee which is a total no no except that I don’t make a habit of it and it only cuts a percentage chunk off one of the many doses.
I wonder if your issue is coming from additives in thyroid medication. I can’t take any thyroid meds with Acacia in them or I break out in horrible hives that land me in the hospital. Have you tried taking just T3 meds?
I wonder if a rare disease specialist would be helpful.
Your post makes me very angry and helpless. Not at you Thyroidfun but on your behalf and anyone else feeling like they are in your situation, or remotely in your situation. You should be getting help. I know that I do not necessarily look ill and that works against me. I have never been examined and had the physical telltale signs of hypothyroidism observed and noted, but I have come to find out from this forum that I have had them for years. Are there no doctors able to observe “the nick” of the patient and work from there? In-hospital investigations sound a better route to get to the bottom of this but I would be wary in case they want to remove anything. In your desperate state you are liable to agree to anything you might be told might help; grasping at straws. You are firing off in all directions (normal under the circumstances I would have thought). I am glad you felt able to reach out to the forum. Quite a few people report having an allergic reaction to levothyroxine and have painfully manoeuvred their way around it. It does not sound easy at all and your allergic response takes in a much wider scope. I could be barking up the wrong tree here but in your case does the allergic thing not need prior attention? The allergy situation has much more immediate and devastating possibilities than your hypothyroidism, which is usually more drawn out. Apologies if you have already looked at it from this direction.
Thanks so much for your kindness and anger on my behalf. I’ve tried multiple anti histamines and immunologists and nothing has helped this- I react to the anti histamines even. I’m starting to think it’s actually some mechanism in the hypothyroidism that’s potentially causing this bizarre issue.
I agree with you about a hospital investigation. But I did a hospital investigation under endo 1 back in April, and she tested me for all sorts of endocrine disorders & other diseases, and then concluded I wasn’t hypothyroid because of normal bloods and that all my symptoms were down to functional neurological disorder (that’s another horror story that happened because I was so extremely distressed about my health and not being helped, having that on my chart is a nightmare for being believed about my physical health, but FND resolved by itself). Endo number 2 the other day I was hoping for an admission but he still is doubtful that I’m correct about my hypothyroidism. It is ludicrous to me that neither of them considered my puffy face relevant or had a differential diagnosis for why a 29 year old woman would walk like I do.
I wonder if it is worth trying to contact Channel 4 Embarrassing Bodies. They usually find the very top experts who are able to get hold of treatments doctor's do not seem to know about, or are allowed to treat under NHS. Obvioiusly if they give you something that makes you better, it would be encumbent upon the NHS to keep it up if they do not want to be found negligent. The downside of course is that thousands of people will be watching. On the other hand some of them might be going through the same problem as you. Of course, it all depends whether they think it would make for a good programme or not. I would think in your case anything would be worth trying. I am so deeply sorry to hear of your plight.
Remember it is not happening when you see the show. When it airs it has already happened so it could be sooner than you think, because they have to have several people to do a show, and some conditions do not improve for several months, so they must prepare the shows well in advance.
MCAS & hypothyroidism can be interconnected and unless you have Hashi, very likely considering the severity of your MCAS and how it is affecting several body systems. Therefore, if the MCAS were to be addressed the need for thyroid replacement hormone might reduce.
Have you had an official diagnosis of MCAS? If so what did your immunologist suggest to calm things down bit? H1 & H2 antihistamines, anti-leukotriene, etc can be useful. Personally I don’t think conventional medicine is very adept at treating immune issues like this. Even Hashi is ignored until enough damage is caused that can be treated. I can’t imagine an endocrinologist being interested unless functional so understanding the implication of long term elevated inflammation on thyroid physiology.
Hashihouseman 's suggestion of supplementing DAO is good but there is plentiful more to be investigated. The vagus nerve is essential for regulating the immune system and inflammation through various pathways including the HPA axis. When the immune response is allowed to get out of control we can suffer any number of sensitivities from foods, chemicals and the environment, etc, and together with inadequate levels of thyroid hormone will be immensely stressful for the body. Therefore, having adrenal cortisol testing and supporting with the correct adaptogens.
If you are so reactive, eating a restrictive diet and have inadequate thyroid hormone levels you will be suffering nutrient deficiencies even though your GP might consider them 'normal'. Nutrients such B Vits & zinc are essential in helping control histamine, providing immune support, helping with mental health support by being cofactors needed for making serotonin and GABA.
The neurological symptoms are worrying. Microglia are the immune cells of the brain that form an active defence in the central nervous system and try to control brain inflammation but can also take on auto immune roles. If this were me I would be looking for a functional practitioner with experience of MCAS.
I would also look at reducing stressors, eg accept your parents have to look after you at this moment in time and how fortunate you are to have them, practice good sleep hygiene & eat an anti inflammatory diet split into several smaller meals a day to appease adrenals and possible blood sugar issues, keep water hydrated, sit outside in the sunshine, practice yogic breathing, humming, tapping, etc, tailored supplements to be discussed with a practitioner well versed with MCAS. I have found Choline (precursor to acetylcholine) especially useful in reducing inflammation since my stroke. Acetylcholine is the main vagal neurotransmitter that also helps improve memory and focus.
You may find Toxic by Neil Nathan that focuses on the biochemical changes resulting from our environment an interesting read. If you post your test results (including numbers in brackets) members will be better informed to offer you their own experiences.
Thanks so so much for your considered response. Sounds like you have experience with similar problems?
Unfortunately, there is nothing you have mentioned that I haven’t researched, tested or tried. I’ve been out of work for 2.5 years so my job became full time health research and trialling different things…This bizarre issue is a reaction to ALL pills, so anti histamines even make this happen. There are no supplements I can tolerate for the same reason.
The most upsetting thing about this whole journey is I’m bursting with knowledge and have researched, read and Guinea pigged on myself to the ends of the earth at this point and have literally tried everything in my power to get well, and still this is beyond my control. I am hopelessly dependent on doctors to help me and come up with a solution but they won’t even recognise the hypo diagnosis in the first place. Such a desperate place to be in.
Hello Thyroidfun. I can clearly see, this is not fun for you at all. Having read your story here, and the replies you've had in support, I hope "getting it all off your chest" has given you some respite and hopefully, some hope? If I were in your position, at this stage I would contact the private endo you saw who diagnosed you, and explain what is happening, and ask for his/her help and advice. Wishing you well, in all senses of that word.
It has really helped. I have a lot of love around me but no one really understands what hypo is like and what it does to you so it’s a lifeline to talk to people who have struggled.
Yes, that’s what I’m planning to do on Monday. That’s really the only thing I can think to do that might be productive.
Just got them repeated on both assays the other day and waiting for results back but I am doubtful they will show anything.
My results from April were:
TSH - 1.59
FT4 - 15.2 (range 12-22)
FT3 - 3.23 (range 2.43- 6.01)
My free T3 is still within the lower quartile and I know ‘optimal’ is considered to be towards the upper end of range. But endocrinologists don’t recognise this.
My TSH has always been normal. I was diagnosed by the UK endo with free hormones at the bottom of range.
Are these the numbers you had when you were first treated - you were put onto 25mcg levo with these numbers? What kind of levo have you tried? Your FT4 is 32% of reference while FT3 is 22%. I didn't calculate TSH because there is no reference range.
Have you by chance had covid in the past few years?
I was first treated with 25mcg levo in Jan 2020 when my frees fell just below range. I felt somewhat better for 6 months but still had symptoms. I went to an endo (endo number 1 who i saw again recently and doesn’t believe me) and her advice was that she could see no evidence of thyroid disease as my bloods were then normal and I had no pituitary abnormality. Even then when I knew little about it this, this didn’t add up to me. Said I could continue taking it if I felt better or I could stop. Knowing no better and being given advice by a consultant I chose to stop and try to take thyroid supporting supplements instead to see if it would resolve my symptoms- by October 2020 MCAS developed. And the hypo symptoms just came back worse & worse.
Saw the endo in UK in Feb 2021 who looked at all my bloods & scans from the previous endo (She had diagnosed PCOS by pelvic scan, but now I now polycystic appearance can be caused by hypo) and he said the pattern, including my presentation & symptoms, fits more with hypothyroidism and officially diagnosed. I tried Tirosint levo at the time and felt horrific to the point where I felt worse than before, and we felt it reasonable to include T3 /Armour but I couldn’t tolerate. I’m not exactly sure when the specific med/pill tolerance problem began but all I know is it’s been present for a long time and I’m completely treatment resistant now even to levo.
I can see why you ask if I’ve had covid (I have but only once and for about 3 days in 2020, healed fine) but it is 100% hypothyroidism, it’s progressive and the symptoms only got worse from the beginning and fit the process/appearance of severe hypo. My brain feels like it’s rotting in my head.
It’s been so, so complex. I think what is happening is something like what it says in the Thyroid UK article about cell receptors no longer functioning over time so that hormones build in the bloodstream but are severely low in the cells.
Have you ever used the Spina Thyr app? It was created by the endocrinologist Johannes Dietrich and you can input your results and it will calculate information that TFTs cannot pick up on- mine showed poor conversion.
Sounds like you may have had covid when this first started. Have you heard of long haul covid? That could be where the MCAS comes from. The only thing I know of that MIGHT help that is an H1 and H2 blocker (I'm trying those right now). I think there may be a strong relationship between long covid and thyroid. I think it's possible that covid can cause a thyroid problem, or make an existing one worse. Or perhaps thyroid problems can make covid turn into long covid.
I am very curious to know what your new bloods are. Could you please post those when you get them?
Regardless, one of your problems is that you can't seem to take meds of any type. I know of no answer to that except perhaps go very very slowly. For instance, what does 6.25mcg levo do to you? I know you've tried a lot of different levo's but is there one you've missed? Have you tried T3 alone? Do your symptoms start immediately upon taking the meds?
Hey, yes I’ve thought about that before, it’s possible that it contributed yeah.But I think my trigger for MCAS was a mix of thyroid and mould/heavy metals. Had testing for these when I went down the functional med route.
Thanks for your interest on my bloods, I’ll post them when I get them back. I’m praying they show something but I don’t think they will. I actually asked the endo if we could test by mass spectrometry because they can sometimes find low levels when immunoassays show as normal but he said because I’ve had the immunoassays repeated so many times it’s unlikely (I don’t quite understand this though because it’s still the same method just many times).
Yeah it’s bizarre the problem happens almost immediately upon ingesting- even with 5mg t3. I haven’t tried that small a dose of levo but I would hazard the same thing happens (I currently have the liquid Tirosint) but I’m not convinced levo-only works for me. I tried a suggestion of one doctor which was to take the meds far back in the throat so they don’t touch the tongue and that did no good. I’ve tried brain retraining, everything. I wish I knew what was going on.
You might want to join a covid long haul group on facebook. You never know - you might find something there that is helpful. They talk about a lot of symptoms similar to what you have. I just think there may be a thyroid connection. Very few mention that. What exactly happens right after you take the meds and how long does it last?
Hi Thyroidfun. I am deeply sorry that you are going through such an intolerable time with your health. I just wanted to let you know that you are in my thoughts and I really feel for you. I am a fellow MCAS ( albeit a ‘mild’ one, according to my doctor!) and Hashimotos sufferer, along with CFS and Fibromyalgia. I am fortunate in that I do tolerate NDT Armour well, although it’s taken me nearly 2 years to get the dose to where I am now, due to undermedication and therefore undertreated hypothyroidism and severe adrenal fatigue, which I am convinced led to developing the MCAS. I am currently on 3 3/8 grain, which I take spread through the day x 3, but am still experiencing crushing fatigue, muscle/ joint pain, migraines, digestive issues, as well as allergic type reactions to chemicals, food, stress. I‘ve been off work for nearly 2 years now, lost my job and am often stuck at home due to being so unwell. The list of foods I can’t eat is longer than the ones I can! I am a member of the Health Unlocked MCAS / Mastocytosis forum as well as the Facebook UK Mastocytosis/ MCAS group, and I find I am always learning new snippets of information there that you might find helpful too. I have also found Beth O‘Hara‘s website mastcell360.com enormously helpful. Have you tried taking Nalcrom ( sodium cromoglycate) before eating to stabilize your mast cells and thus reducing the reactions to foods! I have had some success with this medication. In theory, this could also work when taking thyroid hormones, to avoid or reduce the reaction to the medication. Someone mentioned starting with very small doses of thyroid meds spread throughout the day. Beth O‘Hara suggests staring with any meds/ supplements, etc with MCAS/ HIT that if you are extremely sensitive, you start with micro Dosis ( eg Open the capsule and just take a tiny amount and increase very gradually) to get the body used to the meds/ supplement very slowly.
Another medication that I have found really helpful for inflammation/ pain and is apparently an excellent mast cell stabilizer is called LDN ( low dose Naltrexone). It also supports thyroid function and in fact I don’t tolerate more than 1 mg of LDN as otherwise I get hyperthyroid symptoms.
Anyway, hope this helps a bit and if it doesn’t, at least my good thoughts are with you❤️
Hello! It’s very nice to connect with someone who understands what MCAS is like first hand. I’m so, so sorry you’ve been unable to work too. It’s so incredibly isolating and waking up in this every day is a new grieving and adjusting process. I do have hope things will get better but so far they have only gotten worse.
I’m on 10 foods and I used to be able to eat everything. It’s not a bad diet, it’s full of protein so quite nutritious but having to eat fully cooked meals with eggs/meat for every meal is so heavy.
Beth O’Hara’s site is amazing and gives me a lot of hope for the future. I’ve already identified mould and heavy metals via testing but I’m not strong enough to tolerate detoxing much until my thyroid is ok. So I’m still stuck at square one.
I’ve tried both nalcrom and LDN and I react in the same way to both with this mystery phenomenon. It’s almost like it’s a seperate issue to the MCAS maybe, because the reaction lasts all day long… I don’t understand it
I didn’t know about the MCAS forum on here, thanks I will join that.
Keep in touch if you want to have an MCAS support buddy, I know how hard it is and how not working completely changes your world x
Hi, are you sure the eggs and meat aren’t driving up your histamine levels? I don’t eat meat but eggs are SO bad for me sending my histamine levels off the chart! As well as avoiding high histamine/histamine liberator foods, I also have to take into account bacteria in foods - this is mega important for me to avoid reactions.
I also have all day suffering when it’s bad. Sometimes I can be fine the next day and sometimes it can take 3 days for my symptoms to subside. You’re not alone!
Everyone’s different. I’ve heard of people who can eat avocados with extreme MCAS which makes no sense because they’re so high histamine. For me meat, eggs, frozen fish and there’s 7 veg/starches I can eat, pure peanut butter with no sugar, black coffee. I’ve eaten strawberries this summer to stay sane and hydrate/cool down and I react a bit to them but not in the way I would a blueberry or a peach, say. All other fruit is off the table, grains are my worst, and ehh everything else not listed
Hi. Thank you so much for your reply. Having a MCAS buddy sounds really helpful😀 Yes, being ill for so long, as you know, is not fun at all! I am in the process of applying for a disability pension at the moment, and as my energy is so reduced, I can only focus on the mountain of paperwork and medical appointments when I feel well enough and usually for short periods.
This restrictive diet really is a struggle, although I‘m not down to as few foods as you, fortunately. However, my problem is actually getting enough protein on a daily basis, as I don’t tolerate any dairy, soy, nuts, pulses, eggs and nearly all fish or meat. I‘ve found a fishmongers at lake Zürich who have quite a few customers with HIT. They catch, clean and freeze the fish very fast, and I can eat these. Also found a farm who do the same with chicken.
Someone mentioned Dr Neil Nathan in answer to your post. I actually read the post in the link below about this lady’s daughter a few months ago and bought his excellent and highly recommendable book. She also wrote an excellent recommendation on Amazon. I think this book could be really helpful for you.
I am also going to ask my doctors to check for HPU/ KPU ( pyroluria)as I don’t think that’s been done yet during all my medical investigations. The lady mentions this in her post below as well.
I've also read some of your old posts. So sorry to hear about your situation. Some of us need a different approach. Doctors tend to look for overt pathology and if they cannot find it then their treatment options are limited for the individual which causes more stress and anxiety and more poor health. The body is adaptive to any stressors and you speak about thryoid hormone resistance at the cellular level. This isn't broken physiology its adaptive. The body applies a brake and is trying to protect you by slowing down your metabolism. Why? Cellular stress and the cell danger response. Often due to physica/emotional/chemical stressors and even the way we think and feel throughout the day causes the release of neurotransmitters that signal to the body that we are under threat which compromises basic functions like digestion, repair and reproduction. If you feel unsafe, unhappy and you're constantly thinking negatively, regarding your health or whatver that may be, for example, your brain will try and protect you by slowing your metabolism down. In this scenario adding exogenous thyroid hormone wont work. It will drive your TSH down and your conversion of T4 to T3 will also be poor. This turns into a vicious circle and can be hard but not impossible to help and fix.
Have a look at the work of Dr Eric Balcavage, he explains this here:
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Support for long term thyroid condition 
