I still remain unvaccinated (i am a pro vaccine person) as I have felt absolutely dreadful ie, too many gut flares etc, too weak to stand for more than 30 mins per day all 2021, and can manage 3 hours per day 2022 since switching /increasing meds NDT.
I was about to take the adeno AZ last week but was told its been discontinued. This was a prefered choice by me as the data I read noted that it drove thyroid antibodies the least.This was not clear whether this data was from people with existing thyroid disease or datas result of a vaccine impacting thyroid function afterwards.Nor how long those changes lasted, All very vague.
At this stage the only available vaccs for me is mRNA Pfizer 1st dose (im in UK)the data on this that I read regarding thyroid disease indicated that it pushed thyroid antibodies up 10days later, but it didnt say for how long, ie days, weeks. Nor whether again if it was data from people with existing thyroid disease or data from people experiencing thyroid changes for the first time after an mRna vaccine.Again very vague.
My main angst is to be vaccinated, but not to feel worse,weaker, and more housebound than I already do. And I am truly afraid of this.I have had multiple vaccines from childhood to foreign travel with no problem back then. But since Hashis, I react very oddly ie rashes, swelling,breathing,dizzy,weakness, not anaphylaxis, but without a pattern to many things. "Your tweaked, inappropriate responses" as my consultant calls it.
I just wondered if any of you wise sages out there had any similarities to me when you went for your vaccs, and how you faired days, weeks, months later?
Every best wish, G.
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I have no idea if it raises antibodies or not. But, one thing to be clear about is that antibody levels are not a measure of severity of your Hashi's. Antibodies fluctuate all the time, but if they are raised, it does not mean your Hashi's is worse, nor is it better if the antibodies drop.
Antibodies tend to be higher just after an immune system attack on the thyroid. That is because they have a job to do. During the attack, as you probably know, the dying cells deposit their stock of hormone into the blood, causing FT4/3 to rise sharply - what we call a Hashi's 'hyper' swing. But they also leak TPO and Tg - two proteins contained in the cells, and necessary for the production of thyroid hormone - into the blood, where it shouldn't be. The TPO and Tg antibodies come along to supervise the cleaning up of these two proteins - hence their names.
People often think that it's the antibodies that attack the thyroid, but this just is not the case. They are just there to keep the blood clean.
Lovely to hear from you as usual. Thank you for your response....the voice of clarity and calm to me.
I believed that once ive either consumed ,or breathed in ,or been stung, or extremely upset by something, if my body has decided that day that it doesnt like it, then up comes the exaggerated response (could be a rash, gut upset, hives, whizzy head,breath changes, etc) and a few days later I get the fist like sensation in my throat which may last a day or a week or/month, followed by wiped out......that this was a 'hashi flare' . And in the past (i dont bother checking anymore) up go the TPO's in my case and down again when flare subsides.The lowest they have ever been is with going SF, DF and 2 years Rice free.
I guess what I am trying to say is I dont want to exacerbate the pain and discomfort I already have.Fear.....is dreadful........stops one in ones tracks.
Well, yes, understandable that you don't want to exacerbate the pain, but that has nothing to do with the antibodies. They're not causing it? They are just another reaction to whatever it is that's causing your discomfort.
But, there's so much confusion about Hashi's 'flare's'. It's really not a good thing to call it, because it's not the same thing as, say, a flare up of arthritis, or something. It is, as I decribed it above, when the damaged thyroid cells depost their stock of hormone into the blood causing you to be temporarily hyper. So, symptoms would be hyper symptoms - which, of course would be different for different people. But, I don't think what you're describing would count as one. But, if you don't get your levels checked at that particular time, you'll never know.
Yes true, still have not found out what causes the pain,.....nor an explanation to flattened villi (coeliac ruled out) I still think that for me, there is something not quite right with my utilising of B12 on a cellular level. I cant prove it. I do take B12, have taken B's for over 20 years so possibly skewed all serum/active b12 test from the get go. I cant go longer than 4 weeks without B12 to do a valid MMA /Homocysteine test again. Too many unpleasant symptoms.
But I do think good B12 functionality holds the vital link for digesting all sticky proteins well and links to Hashi's, and that this may be the problem for me, gut wise, thyroid meds wise , histamine reaction wise etc. .......just cant prove it, nor get help.
My Endo hasnt discounted it, but is personally not allowed to trial me B12 .Meanwhile im getting weaker and weaker and not much ummph left to stand up for myself and be heard...but hey ho ,onwards and upwards. I can hear my old Dad saying"Dont let the bug**rs grind you down"..........ha ha .
Every best wish to you GG and thank you for being there, G.
Well, low B12 does cause low stomach acid - which in turn causes low B12... It's a vicious circle. And, optimal stomach levels are vital for digesting everything. You could do the home bicarb test to see if your stomach acid is low.
Yes I did that many years ago, v low acid. Then followed it up with the Acumen VE saliva test (via Dr s Myhill) which came back as borderline achlorhydria. I added Betaine and Enzymes for a year, retested with Acumen that year on and was out of the danger zone and into a more respectable level of stomach acid. I still follow the same protocol 5 years on.
I know that when I take Hydroxocobalamin, Adenoslycobalamin sublingually I do well up to a point. The methylated versions make my head spin and make me edgy (similar feel as too much T3) I seem to have a pathway block somewhere... the methyr gene fault reads to not really be significant so they say, + very expensive tests, + what do you do with a pos test info anyway.
Trial of B12 for 3 - 6mths would be harmless by all accounts (unless you are male, 30's and a smoker, only neg data linking this group to lung cancers....)I could DIY B12 myself, but would much rather do it under guidance and for my records....just to rule it out or in.
Take care GG, have a lovely evening and weekend. G
Hi, they may be wrong about the coeliac test, or it may be that the flattened villi are due to corn (not wheat) gluten and they don't look for that at all. Your reactions sound quite mast cell/histamine like. As far as the B12 is concerned, I am in a similar position but have been lucky enough to be referred by a neuro to Adult Inherited Metabolic Diseases team for investigation & genetics. Don't know what, if anything, they will find, but could you try for a referral too? MTHFR is only one little bit of the long list of potential metabolism problems, and generally it is the combination of SNPs that may have some effect on how we function (or don't), not just one alone. B12 and the folates cycle and one-carbon metabolism I am certain affect far more than we realise and are more common than is understood (yet). PS I am also vaccine-less. Too many reactions, to everything incl previous other vaccines, so not for me unless I can make significant headway here. Best wishes
Thank you for taking the time to reply......lovely to hear from you Gluten Goddess ? Im still tipping the chilli pot up to excess.
I have alot to research still, and thank you for the suggestions, I am willing to look at everything. I hope your referral sheds some light for you too.
The corn thought is a possibility, I dont eat it and have not for years, except for an excipient in Armour NDT . And I do think the tiniest amounts can still send warning responses. Corn seems to be in all the thyroid meds.
I dont blame you re vaccine uptake then, its a lottery. And very difficult for others to understand just how lousy one feels and not wanting to do anything that might make one worse .
Hi and thanks for the good wishes. I'm waiting on blood etc test results now and then will do the genetic stuff in a few months. Worrying that corn is in all the thyroid meds as that is my next thing on the list...Hope you can make some more progress and all the best to you too x
Dear Gillybean1. I am very sorry to hear you are struggling. Just my two cents worth: you‘ve described your symptoms and mentioned histamine reactions, and bookish also mentions these as well as mast cells. When I read your description of your reactions and that you don’t tolerate B12 well, I immediately thought of Mast Cell Activation Syndrome. The symptoms you mention as well as not tolerating supplements fit into the picture. Many MCAS patients also suffer from Hashis. I am unfortunately one of them! At first my doctors diagnosed Histamine intolerance but we soon realized there was more going on. One of the biggest issues I have are with my digestive system and massive reactions to food, chemicals, stress, my period. Causing debilitation chronic fatigue,post exercional malaise ( PEM) migraines, brain fog, joint, muscle pain, flushing, urticaria, the list of what I can eat is shorter than what I can! If you are not already gluten free, I would strongly suggest you start there. You mention your coeliac test came back as negative, but you could have non-coeliac gluten sensitivity. According to Izabella Wentz ( Thyroid Pharmacist) 80% of Hashis patients have this.
There is a MCAS group on Health Unlocked and a very good and active FB group, where you can ask for help and info.
I‘ll post the links once I‘ve sent this message, as don’t want to lose it ( has happened before 🥴).
Forgot to say that I am not vaccinated for Covid either. I am not pro or con vaccines per se, rather try to take educated decisions as much as possible. The doctors and I are wary of both the reaction to the virus and the vaccine, not sure which is worse with MCAS, as Covid is a Mast cell linked illness. I decided on my doctor‘s advice not to vaccinate as my health is so delicate I can’t afford to inject myself with something that is irreversible and may cause terrible health issues. It’s possible that catching Covid itself may do the same but I am living with that risk at the moment and trying to be as careful with exposition as possible.
This can be a really difficult decision to weigh for people who have good reason to suspect their health could deteriorate after either the virus itself, or the vaccine. I'm one such. I am still badgered occasionally by the NHS to have the vaccination, but I receive emphatic reminders from one specialist not to go down that path. This is quite a risky thing for a doctor to do now, given the climate of censorship around this topic, and warnings to doctors from the GMC and other professional bodies that their registration and employment will be at risk if they give advice to patients that is deemed contrary to the blanket conformity required of them.
I was recently diagnosed with MCAS by a gastroenterologist, but actually the symptoms started 45 years ago in my teens, alongside my first autoimmmune conditions, Hashi's and pernicious anaemia. I developed those conditions in the months following a severe immune response to travel vaccines. (These were not diagnosed formally until my 20s and 30s, despite obvious symptoms, signs and test results filed on my medical record.) After every subsequent vaccine, or booster for things like tetanus, my health deteriorated further, so I decided against having any more 20 years ago.
Thank you for taking the time to reply. Well hearing some of the responses to my post and including yours, I dont feel so alone, or quite the terrible person I have been made to feel over a vaccine.
May I ask how the Gastroenterologist diagnosed MCAS, what did he blood test exactly do you know? And what treatment if any have you been given?
Can I ask you is the specialist who advised you not to go down the vaccine path in Gastroenterology?
I had alot of investigations, endoscopy, numerous blood tests, by a gut Proff 10 years ago, who couldnt explain my flat villi, and after many consultations agreed off record that he didnt know what was wrong with me.......so suggested anti depressants. I was pretty upset by that. I declined the prescription because I did not feel remotely depressed, otherwise I would have accepted it. He was furious with me, and very unkind. I dont recall any MCAS being mentioned.
I am very glad to hear you are getting some support in a positive direction hopefully.
And very thought provoking reading your previous vaccine journey, it makes me think of all the ones ive had for work/travel etc.
Hi Gillybean. Sorry, I've only just seen your reply.
My gastro also holds a professorship and is an active researcher into various syndromes affecting gut function. He told me that in the research setting he would be able to run tests that would pick up the MCAS, but the only NHS lab tests that are capable of detecting a problem are designed to pick up just the most severe form, mastocytosis.
He diagnosed me by a process of elimination, and on symptoms and signs. I'm actually pretty annoyed that he suspected MCAS many years ago and didn't treat me for it. That said, a comment he made when he prescribed me sodium cromglicate capsules gave me to understand that his medical colleagues are still very sceptical about the existence of MCAS. Now the condition has a higher profile he felt able to ask my GP to take on repeat prescriptions. As things stand, I think I actually need ketotifen, but he wanted to try me on the more innocuous drug first.
The doctor who advised me against vaccination (of any kind) is one I've been seeing privately for another immune system disorder.
Good on you for persevering. Its so annoying this hands tied, or worried what a colleague will say , from consultants within our health care system.Safe, safe, safe.
Im just glad you have someone who is finally helping you, and I hope you get some improvements soon. To this day I always tell myself 'there was a way in, so there must be a way out of this'. We just have to rewrite the books.
Every best wish Hillwoman, and thank you for taking the time to reply. G.
Your 2 cents worth is very valuable to me, so thank you for taking the time to reply.
With your MCAS diagnosis, what do you do with that info, if its a syndrome? Have you been helped?
Its this chicken and egg, which came first , for all of us on here. I mean by that did something we ate, drank,breathed in, effect our gut, skewed our responses, effect our thyroid, impacts our immune response.........=histamine reaction, antibody flare etc etc.
We have such beautifully engineered bodies, which for the most part work well under pressure, so I am constantly fascinated (+ a bit cheesed off with mine at the moment) as to what it is/was that has happened to all of us,on varying levels.
With the exception of migraines, you and I sound very similar. Especially the list of what you can eat being less than what you are unable to tolerate .
I know Proff Tim Spectre's clinics encourage introducing teeny tiny amounts of an aggravating food and monitor day on day etc , under supervision.I dont know about you, BUT when I have the pain, the flare, the itch, the prickling, the nausea etc inconsistantly, I opt for the food groups that I know will be ok-ish, so that I can sleep that night, or function a bit that day...if you know what I mean.
This is probably the worst thing to do, because I am ending up missing a rounded variable diet, which in turn will perpetuate more gut problems, immune probs, flora probs etc.
I strongly believe if gut function is optimum, good health exists.
The vaccine descision is tricky for some of us. I just have to decide if my thoughts are from intuition or blind fear...not sure. I can totally understand your concern,, and how refreshing to hear your Doctors had concern for you over this too.
Take good care Swissgirl, with every best wish to you, and thank you for sharing, G .
after being given Teva Levothyroxine in 2018 the pharmacy gave myself and daughter this brand in place of MP wee became very ill I had a ultrasound of thyroid my thyroid was very small with a nodule and my antibodies were nearly 4,000 my daughter was the same they are still high I asked my GP would it be ok for me to get the covid vaccine his answer was he couldn’t tell me so I still haven’t had any it seems there is a form you can get and you take it to your GP for them to say if you can have the vaccine or not but I wouldn’t bother asking for it as myself and daughter have been waiting for about a year for it and still don’t have it have phoned about it a few times but for some reason they seem to be reluctant to send it to us.
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