Flare : So it’s that time again where I’m... - Thyroid UK

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Flare

MissFG profile image
60 Replies

So it’s that time again where I’m experiencing a flare. One particular symptom I struggle with is my thyroid feeling swollen and making it difficult for me to swallow. In addition to having a cold I feel generally rotten.

I should be used to this by now, but it’s never a nice experience and I do hope one day these attacks will come to an end.

But in the meantime, any advice to help me feel better besides keeping to the usual T3 dose I’m on, supplements I usually take and gluten free etc

Does anyone decrease their T3 or other thyroid meds during a flare?

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MissFG profile image
MissFG
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60 Replies

Nurofen or any ibuprofen is helpful for inflammation, my GP recommended it, it worked for me. Also, hot or cold packs for neck bring some relief. And lots of rest, liquid food. Hope you feel better soon! I hate these flare ups

MissFG profile image
MissFG in reply to

Thank you! I forget how bad they are until I get one. 5 years on an they still catch me out and upset me physically and mentally. Thought I was feeling tearful as well and hoping I’m just run down and fed up. But it’s definitely the hormones and symptoms of a flare 😢

It’ll pass, just no one understands unless they’ve experienced them themselves

in reply toMissFG

They are bad, but thankfully they go away. Try to distract yourself as much as you can, these compresses really help. Generally you feel more up and down, more fatigued, more swollen etc. And yes, swollen neck and sweats shivers. Try nurofen!

tattybogle profile image
tattybogle

What are you meaning by 'flare'

Sometimes people use that term or the term 'swing' to loosely to describe the destructive action of hashimoto's disease. but it's a rather woolly term and who knows what anyone means by it.

If you were able to catch hashimoto's in the act of destroying your thyroid , you'd probably notice blood levels of fT4/3 going up rapidly and then down gradually until they settled at slightly less than before and stayed there.

But in reality no one ever get's enough blood test often enough to see this happening, so all we can really say is that Hashimoto's account's for random up's and down 's in thyroid test levels, and often starts with a period of apparent hyperthyroidism.

But if that is what you mean by 'flare' i don't know why you'd think of increasing your T3 dose at the same time as your damaged thyroid was dumping some of it's own T4 /3 into your blood ?

I'm pretty sure if you've 'got a cold' , then that is what you've got. I don't know of any connection between the destructive process of autoimmune thyroid disease and having a cold.

MissFG profile image
MissFG in reply totattybogle

I’ve been diagnosed now 5 years so when I say a “flare” - it’s when I have been stable and then feel an attack on my thyroid - I’ve also had numerous ultra sounds which show inflammation at this time and bloods and medication have been recorded on a regular basis. So although I’ve been unable to get T3 on the NHS I have been very well looked after during this time and still continue to be just not by any endo. In reality I have the bloods and scans to show several attacks.

However I’m now on T3 only (self medicate) and mainly have it under control but just wondered if anyone decreases their medication during an attack so asked this question out of curiosity? With this disease theres always plenty to learn and experiences of others that may help us. So I keep an open mind.

I also have a cold (which I said was in addition to my thyroid symptoms) and tend to have these symptoms throughout winter as my immune system is compromised, but I clearly know the difference between a cold and my thyroid symptoms as they are very different. Just at the beginning when I began feeling unwell I hoped I was just run down with a cold not anything to do with my thyroid.

I posted mainly for support as any “flare” - (yes flare a term my rheumy uses) isnt easy. Maybe just skip past posts if you’ve nothing supportive or encouraging to say as I fail to see any in your response to my post. Thank you

tattybogle profile image
tattybogle in reply toMissFG

Sorry , yes you're right. i had misread it as 'cold being a symptom of a flare'. not as in 'cold happening at the same time as a swollen thyroid'

MissFG profile image
MissFG in reply totattybogle

Thank you. As you can imagine I have an increase in anxiety too so was really just looking for support. I’ve been in this support group for many years now, but it doesn’t make the disease any easier to live with even when we do all we can to help ourselves

in reply toMissFG

These flare ups do cause anxiety and panic out of nowhere, happened to me twice this year. I had an ultrasound done at the time it was happening, I had an increased blood flow in my right lobe, exactly where I had my throat pain. I am not sure on changing doses, generally I don't do it, because it confuses me further so I try to stick it out. I know it's not easy. And I agree re: support on this forum. Sometimes it feels like going to a doctor's appointment, where you are told it is all in your head and you need to fit some generic picture. Everyone has unique symptoms even if research says otherwise. I have disappeared from this forum for a while, because I was tired of defending myself and being told things like my ferritin is the cause of my issues (it isn't for everyone).take care x

MissFG profile image
MissFG in reply to

Yes I feel we definitely have to ride it out. My thyroid also gains its own heartbeat. But I know it will eventually ease and I’ll be back on my feet soon. Thank you for sharing 🙏🏼

ThyroQueen profile image
ThyroQueen in reply toMissFG

I have tried increasing my T3 during flares, twice, by only a tiny amount of course, and it has not helped, sadly. I have found the only thing that helps me during a flare is actual sleep, loads of it. I am just coming out of one, and they are brutal; I wish you relief ASAP.

Timetraveler67 profile image
Timetraveler67 in reply toMissFG

I get these flairs as well so I really do feel for you love, I also get what a call flash flu- runny nose, feeling cold and shivery all the cold symptoms that your saying you get. I go into a panic but it’s been better lately when I’ve managed to remind myself that this will pass, I write it down on a piece of paper and stick in on my fridge. I used to force myself to eat but now I’ve learnt to give my body a rest and just drink water and juice for a day then start eating again slowly with a bowl of porridge. I just wanted to share what I do when a flair hits I’m sorry I don’t have much else to offer but I do wish you well and hope you feel better soon x

MissFG profile image
MissFG in reply toTimetraveler67

Timetraveler67 thanks for sharing, yes I have lost my appetite. Not a bad thing as want to lose a few pounds! We have to look in the bright side 😁

Unfortunately maybe with another lockdown I’ll have the rest I need.

Lotika profile image
Lotika

Feeling thyroid yuck is nasty. I thought I had what I called flares, but I think it was a bit like Tatyboggle said in that, in my case, the flares made me feel better. So what felt like a hashis low was “normal for me on (inadequate) meds” and when I was OK I was probably in a flare... so all that extra T4 and T3 being dropped into the blood with bits of dying thyroid was my good day. I gladly await correction, of course.

Sounds like it might not be the same with you - I don’t necessarily have thyroid ache.

But if a bad day is a good day and v/v, it maybe means we look at the meds a little differently? I mean, I’d like to iron out the rubbish, personally. But do take me with a pinch of salt - I claim no expertise here, other than knowing how meh the bad days are, obviously. All a long way of saying that maybe you need to do a test for TSH, T4 and T3 ASAP and tweak accordingly?

Lotika profile image
Lotika in reply toLotika

Whilst I am here, I think a high dose of turmeric + black pepper seems to help me with inflammation issues more generally. Am not sure if you take that one already, but whilst I don’t always notice if I miss it, I quite often notice a positive impact when I reintroduce it.

More generally, I’d love it if they could stick a needle in me at a moment’s notice! When I’m feeling good, I’d like to know what that looks like in terms of thyroid hormones and likewise with the bad!

MissFG profile image
MissFG in reply toLotika

I’m on quite a few supplements that help me a lot. I keep meaning to try turmeric but what to get it fresh to try in my juicing. So I’ll have another look and see if I can get some, and see if it helps.

I’ve also run out of COQ10 which I feel better in so waiting for my order to come. If you haven’t tried it and are low in energy it’s worth a try 😊

Lotika profile image
Lotika in reply toMissFG

Ha - yes, I have CQ10 in the drawer but it’s not in the current rotation... maybe I will try again - good thought! Turmeric isn’t very bioavailable in its standard form - black pepper increases uptake significantly, so supplements are more likely to be useful than a smoothie... don’t want too much of that in a turmeric latte or smoothie!

diamondial profile image
diamondial in reply toMissFG

If you're going to try turmeric I'd strongly suggest you google Golden Paste recipe by Doug English. He is an Australian veterinary surgeon, so don't get put off by any references to animals! There is a group on Facebook started by him with a huge amount of extremely knowledgeable admins there. As Lotika says, to gain the most from turmeric it needs to have been pre-cooked, ie powder and cooked again and then fat and black pepper added. I make it and freeze in cocoa bean moulds and take as 'tablets' morning and evening. I should add it is quick and easy to make. 😊

MissFG profile image
MissFG in reply todiamondial

Thanks would liquid form with black pepper be precooked for you know? I’ll take a look on fb too

diamondial profile image
diamondial in reply toMissFG

I'm sorry I don't know. I only know what I've read in the facebook group - Turmeric User Group (not UK or any other spelling) which is fantastically informative. If you need a reputable source of turmeric powder I use Just Ingredients.

MissFG profile image
MissFG in reply toLotika

We’re all so different aren’t we, it can be hard to say. I’ve been on T3 only now and pretty stable majority of the time on the same dose. And when I’ve caught an attack my FT3 increases and my thyroid is inflamed.

I was like this constantly for a long time u til I got my dose right on T3 only. It’s hit and miss until we find what works for us. And getting our supplements right too.

So hard getting my bloods done now with at the GP due to Covid but I’m due my 6 months rheumy blood test soon and they always check my TSH FT4 and FT3 although only FT3 counts really for me as my thyroid is suppressed. It used to be quite easy to get my bloods done every 3 months but not now.

Lotika profile image
Lotika

Agreed re different :) Re rheumy... do you have RA as well or similar? RA can cause the tired thing too and these AIs like to gang up... I think (maybe I am just old and impatient - and perhaps, realised I put up with being I adequately medicated for too long, so I am throwing my baggage at you - catch!) I would be tempted by a private test to make sure there was nothing I could do. Feeling thyroid low is horrid, so I’d want to be sure before I accepted it again... it does raise a good question, however, in terms of what, exactly we can treat here and what we have to live with...

MissFG profile image
MissFG in reply toLotika

I had a rare form of myosotis which has caused damage to my thigh muscles, arthritis and Connective tissue disease which they still can’t find the cause of but I know is linked to my thyroid. But they like to treat the symptoms not the cause.

I’ll speak to my GP as although I describe it as a cold it’s affecting my sinuses and ears I just don’t want anymore antibiotics. However if he knows I’m generally unwell and I’m having a hashi attack, he may test my thyroid levels. They are pretty good. I just know I’m probably doing all I can and acceptance of the disease is just as important as treating it unfortunately

Lotika profile image
Lotika in reply toMissFG

Yes, I think you are unfortunately right re a level of acceptance, if thyroid isn’t the whole picture :( Agreed with doctors and symptoms rather than causes. I guess symptoms are a lot easier. But. The connective tissue reminds me of a friend who has the autoimmune one I can’t spell but causes thyroid stuff too... Sygorens or something like it... she has to accept a level of “meh” with that one, unfortunately. And one with RA, who similarly has to accept a level of the same. I swear, by your mid 40s, everyone seems to have something!

MissFG profile image
MissFG in reply toLotika

Hopefully as I’m in my mid 40’s now I’m all done with and will just manage with what I’ve got. Think it’s enough for me 🙏🏼😂😂

Lotika profile image
Lotika in reply toMissFG

You and me both ;)

MichelleHarris profile image
MichelleHarris in reply toMissFG

MissFG Regarding the myosotis, you didnt have an intramuscular injection like a tetanus in your thigh did you? Just reading about reations to adjuvants triggering auto immune illnesses x

MissFG profile image
MissFG in reply toMichelleHarris

It was in my adductor muscles not on my outer leg where any injections would have been. But thank you for your thoughts on this

kaju20 profile image
kaju20

Hi! I haven't ever responded to one of these as I'm only just figuring out what's going on with myself. Reading your story, it was like reading where I'm at at the moment. Im Ok, then a flare hits and it brings you down. I also cant get help on the NHS at the moment so I'm gathering test results to go private. When I get these "flares" I get awful migraines that these days put me out of action for a few days now. Ibuprofen doesnt bring down my inflammation or help in any way, I'm still to find a good solution that works for me but one thing I did have recommended by a friend who has hashimoto's which has helped me with mood... my husband notices I'm less crazy and I feel like I handle things better is supplementing with l-tyrosine as I believe it helps with dopamine? Not all supplements work for everybody but I found it at least helped me feel less down when I get the flares... really feel for you and feel strangely comforted to know I'm not alone. I keep checking this forum for suggestions that might fit. Thank goodness for this forum! Thinking of you :) x

MissFG profile image
MissFG in reply tokaju20

Thanks for sharing kaju20, sometimes when we’re struggling we just really need to know we’re not alone and have the support of others that experience the same issues.

I’ve suffered with severe migraines since I was a teenager. A neurologist gave me the best advice to take soluble aspirin and paracetamol together as soon as it starts. I also have 20mg of imigran that helps. But nothing takes it away 100% until I’m feeling better in myself. But these do help and having smaller cluster migraines are a better option than a severe migraine that lays me up in bed. I also meditate which helps

kaju20 profile image
kaju20 in reply toMissFG

So true, thanks for that. I'll try that, I was prescribed naproxen as the pain goes all down my right side, i believe its referred pain... my husband studied sports science and he thinks its everytime my nodule swells on my thyroid it presses against the tiny neck muscles which then refers the pain in my eye socket, ear, shoulder, arm... so I try to take anti inflammatory when it starts but it's so hit or miss if it works. So I'm trying to work out what is actually causing the nodule to swell up. Stress definitely has an effect for me so like you I do a form of meditation, trying to simplify and cut out as much stress as possible. The last few months I found... like you mentioned gluten... I have awful flare ups now after eating white bread. Feel like I've been run over by a bus the following day! I dont know if its gluten or wheat? Do you get acne too? I've never had acne but I have acne now on my chin. Also ended up in A&E with gallbladder attack... seems alot is hormone related maybe. Are your symptoms seeming to be hormone related too? I'm just trying to figure out triggers at the moment. Taking supplements to help hormones, its early days, only been taking them a couple of months but I'm hoping they might alleviate some symptoms

MissFG profile image
MissFG in reply tokaju20

If you go back thru my profile you’ll see loads of posts where I’ve asked so many questions and learnt an awful lot.

But the main thing I’ve learnt is that we all respond differently. Introduce or exclude one thing at a time and monitor how you feel over several weeks. It takes time but you’ll know what to avoid and what to continue taking.

I have really bad muscle pain so I find gabapentin really helps me plus I’m on amytriptyline to help me sleep. This is what works for me so I don’t always recommend taking more prescription meds, they do support a better quality of life for me. But it took many hospital visits to get this far and I push for help and have had some lovely consultants. Just shame there are no nice Endo’s out there!

Stress is a key factor I believe plus a genetic weakness. I trained in meditation and use self hypnosis both get me thru stressful times and keep me so much calmer than I ever thought possible. Now I realise I was stuck in survival mode so calming the mind is just as important as calming the body

kaju20 profile image
kaju20 in reply toMissFG

Thanks for the tips. I'll look up the gabapentin. Anything that helps the pain right. I didnt want to take amitriptyline only because I've had some awful GPs that ranged from telling me to pull myself together, that I was suffering depression and another that pulled his chair into my face and told me there was nothing wrong with me. So I felt like I didnt want that going on my notes that they put it down to depression... my goodness, we get down because its exhausting feeling so unwell, not knowing when the next flare is coming. Try not to get down about that when you're life is full of starts and stops that you cant control. I'll keep an eye on what you've found helps. Like you say it is working out what works for you. Seems like the body is so finely tuned, with the functions of the thyroid hindered it starts whacking everything out of order and so it a chain reaction, like you mentioned our personal family inherited weaknesses might contribute to why for one person it might be gallbladder, another kidney related issues... I figure that's why some things work for some and not for others

Thanks so much for your help :)

CapnM profile image
CapnM in reply tokaju20

I get the referral you talk about, also mainly down my right side, some days my arm, knee and ankle all hurt. I felt it was a bit odd so glad its not just me over thinking things. I have had tennis elbow for 6 months and whilst I do play tennis this occurrence is strange and will not go away so feel it is thyroid related.

General conditions come and go and haven't found anything specific to manage it though am big believer in supplementing vit d at 3000 ui in winter (1k in summer). Also I feel the tennis exercise helps with building general strength - both lockdowns (or all 3!) I have really struggled with muscle weakness and referral.

I had moderate myopathy coming out of first lockdown to which a 12mcg increase in levo seemed to eradicate.

I used to get a lot of headaches which no ibro's would solve, took 12+ months but I tracked it down to alcohol to which I had become intolerant (seems to be a common one). Just one drink and I would have headache and be listless for 24 to 48 hours. Stopped touching the stuff and never had another headache.

cheers

kaju20 profile image
kaju20 in reply toCapnM

That's really interesting. I'm only just now trying to piece things together, what's thyroid related. Alot of my blood test results are borderline so obviously GPs say everything is ok. I've actually only been linking things after requesting copies of my blood tests. It's funny you mention about the alcohol because the exact same thing has happened to me more recently, completely intolerant to alcohol now, the tiniest amount and my thyroid swells up, I ache everywhere, my eyes feel so heavy etc. Also pork particularly gives me the same feeling. I feel it in the backs of my arms strangely. Dont know if you've found that? I've had alot of kidney pain lately and felt exhausted for the last year and despite taking quality and quantity supplements of all the usual D like you in 3000 with the k2, magnesium, folate, iron, omegas etc etc I'm still exhausted... I told my gp while he had my blood results infront of him and offered no explanation... after requesting a copy there was a note my red blood count was about average... I read up, that happens when theres not enough oxygen getting around your body, could be as simple as not enough iron. Shame we have to do our own investigation. As regards the pain down the right side, mine started top of my shoulder, the trigger point now seems to be in my shoulder blade now. I just find it strange that the naproxen doesnt touch it if it was just muscle related. The pain doesnt stop I find until my thyroid calms down. I am thinking of trying a light routine of kettle bells to see if strength training might help, like you say tennis helps. Joint pain throughout my body is just the norm but I did a little research on a particular function of the thyroid, dealing with converting calcium, but if that doesnt work properly the body uses calcium from our bones... I dont know but I just wondered if that's aggravating joints? So I have started taking a solgar bone specific supplement to make sure I'm getting better calcium intake... I'm only a few months in to investigating which vitamins or minerals the thyroid process so it will be interesting to see if working on getting levels optimal might help with pain

MissFG profile image
MissFG in reply tokaju20

Kaju20 I feel for you as until TSH reaches 10 no one wants to help you or medicate you. Mine was pretty high when I got diagnosed but they just gave me some pills and no explanation but I was so sick so starting researching and requested a referral to an Endo. But as they follow nhs guidance your best off seeking a private Endo and use this forum as there is so much information here probably a lot more than most Endo’s on the nhs know!

MissFG profile image
MissFG in reply toCapnM

CapnM I have bursitis which I think is the same as tennis elbow but I have it in both hips and one shoulder where it’s painful and can feel it in my elbows and other shoulder but can cope with them. They can’t figure out what’s causing it other than I have muscle damage in my adductor muscles so causes lots of pelvic issues. But I do feel it’s all linked to thyroid disease.

HashiFedUp profile image
HashiFedUp

What are your vitamin D levels like? Low vit D is common in thyroid patients and can mimic a flare up?

MissFG profile image
MissFG in reply toHashiFedUp

Thanks I take a good vitamin D supplement and levels have been good as are all my previous deficiencies since I started supplementing

Gilbo72 profile image
Gilbo72

I think you have described a ‘flare’ beautifully. Until I read your post I hadn’t really seen them as an event to get through. In my mind I am just effing and blinding about the whole ‘dodgy thyroid’!

A few years back, I was going through exactly what you described. I felt absolutely rotten, fluey, couldn’t sleep, felt like I had a scarf tied around my throat, so much so I was beginning to sound hoarse, felt a bit hyper. Went to the GP as I felt so bad. The stup*d man (the one who took me off the levo because my TSH hadn’t reached 10) said very patronisingly ‘Oh, you are having a panic attack my dear’!!. ...

I am pretty stable at the moment. I get them occasionally, mostly at times when my immune system is fighting a head/sinus type cold. I think it’s to do with busy lymph glands in your throat being over zealous and over active. I am pretty sure my Hashimotos started this way in the first place. (I had been very emotionally stressed and really quite ill for some months. I seemed to be catching everything going after recovering major surgery and recovering from pleurisy and had then caught a nasty head cold).

I tend to think of them as ‘attacks’ and find my hair may fall out a month or so later and a feel quite underactive at that point. So in my mind if you were going to increase your dosage that may be the time to, not now. But I have never done that.

When I go through these flares, I am subconsciously diligent about being gluten free, and try and be kind and try and reduce the ‘length’ of being ill. Ie everything you would do to get over that cold.. sleep, hot drinks, sinus wash, vitamin c and zinc etc. The cold will pass, but the immune system/attacked thyroid may take a while to dampen down and I think it gets a little hyper first before going little hypo later.

Xx

MissFG profile image
MissFG in reply toGilbo72

Yes your right with some great advice, usually what I’d tell others too! We just all need some support at some time. I’ve been admin in a support group of 7k members all healing from abuse. So I’ve stepped back as my health has to come first and the stress it brought me although fulfilling really wasn’t good for my health. I think this may have triggered my recent attack. Plus a cold and sinus issues and all the restrictions were living under I’ve had better times

Sometimes we just need to put self care as our priority 😊

MrsQ20 profile image
MrsQ20

I’m currently in bed feeling rubbish too. Had my Levo increased at start of Dec and about 10 days later I felt a bit more energy and headaches went and have felt much better until Boxing Day where I caught a cold. Still felt ok- just cold and a bit of a cough (but nearly always have that- have asthma as well as Hashis) but Friday night suddenly felt REALLY tired and I thought ‘here we go’. Have had a really bad headache since, total fatigue, body aches, drier eyes etc. I’ve learned just to rest up but it’s hard. I’m due repeated blood tests mid Jan as follow up to my increased dose (I’m on 100mcg Levo). As I’m 49 I’m trying to monitor menopause symptoms too. I’m wondering if recent flare is due to being a bit more lax with gluten free over Christmas (usually very strict), a couple of alcoholic drinks - often don’t tolerate them well anymore, missing a few of my supplements and staying up just after midnight at New year, coupled with the cold I’ve had. It’s just trying to work out why it happens to try and mitigate it in future and knowing there are others that feel the same. That’s why I wanted to reply to you. Take care and love from a fellow sufferer.

MissFG profile image
MissFG in reply toMrsQ20

Aww I feel for you! At least you know your not alone. I think all of us struggle with gluten and alcohol - and I love a glass of red wine. I have sourced some drops that remove the sulphate in wine so I can tolerate a glass occasionally now.

Let’s make a promise to ourselves to rest, stay calm, eat well and put our health first until we’re back on our feet. Which going by my experience won’t be too long 😘

Mostew profile image
Mostew in reply toMissFG

What effect does wine with sulphites have on you. I do get the organic one without sulphites sometimes but am tempted by offers of others that I like better !!!! .

Not that I drink excessively but a small glass is comforting and I believe beneficial ...

MissFG profile image
MissFG in reply toMostew

I get tremors in my stomach / abdomen if that makes sense. It’s a horrible feeling so know it’s one thing that upsets my stomach. And as majority of our immune system is around our stomach it’s clear they’re linked and can contribute to our thyroid disease.

Since using the drops i can have a glass of wine without any dude affects especially the tremors

Mostew profile image
Mostew in reply toMissFG

Thank you. Interesting. So hard to trace what causes what sometimes..

Mostew profile image
Mostew in reply toMissFG

Oh just re read . You said drops to put in wine. Wher e did you get them ?

MissFG profile image
MissFG in reply toMostew

The Brand is called Just Aid and it’s 3 small bottles of Wine Aid which removes all preservatives incl sulphites. It’s only £12.99 atm and you just need 5 drops per bottle or one drop per glass

CapnM profile image
CapnM in reply toMrsQ20

that's interesting, some of those symptoms relate to me right now and I had wondered if it was Christmas. I relaxed on GF front for first time since starting GF free diet and think I am paying for it in the last week. Then treated myself to a little red wine Friday night and just knocked me out.

MrsQ20 profile image
MrsQ20 in reply toCapnM

Sorry to hear that. Whenever I have these episodes I just try to be detective to work out why. It’s been a calmer time over Christmas so can’t blame it on rushing about this year.

MissFG profile image
MissFG in reply toCapnM

CapnM I only drink red wine with the sulphites removed bu some drops I purchased on amazon work great so now I can had a glass

CapnM profile image
CapnM in reply toMissFG

thanks, what ever works for you is good but the biology between consuming sulphites and why some people with hashis can no longer process alcohol are unrelated.

most people with hashi can adapt techniques to drink a little alcohol but its generally hit and miss and exericse in hope over fear :-)

MissFG profile image
MissFG in reply toCapnM

I think it all comes down to gut health

Sewit1 profile image
Sewit1

I used to suffer with these attacks as I too have Hashimotos. Since having allergy testing I’ve found that I have allergies to eggs and cows milk. I avoid these foods plus nuts, seeds, nightshade vegetables and no longer drink coffee. I basically follow an autoimmune protocol diet. I also take supplements for b12 plus a general b vitamin along with vitamin D and iron if my levels are low and liquid zinc seems to help with sore throats. I’ve stopped getting these flare ups. I did try a plant based diet first and enjoyed it but have re-introduced fish and some meat as I cannot tolerate legumes. I’ve managed to lose 20 pounds this year, and my thyroid levels are now all within the ‘normal range. I’ve even been able to reduce my medication substantially and feel well. The help and support on this forum have really helped with what should be tested and empowered me to take charge. I also used to get flare ups in my eyes and my joints used to be very painful. Personally I think if you can take care of your gut this seems to help with inflammation. Good luck.

MissFG profile image
MissFG in reply toSewit1

Yes I totally agree but really struggled with the autoimmune protocol diet. So I try to eat fresh and clean and avoid most grains and processed foods and eggs

marinria profile image
marinria

Hi, sorry you're feeling unwell. It occurred to me that what you feel as a flare might just be overmedication. We don't need a constant dose of replacement hormones. Our needs vary with physical activity, meteo conditions and so on. Therefore if we take the same dose everyday we might overmedicate or undernedicate compared to our actual needs. I know it's hard to decide what to do but I just thought you might consider the possibility that you symptoms come from medication.I hope you get better soon

MissFG profile image
MissFG in reply tomarinria

It took me years to get on a stable dose of T3 only and when I’ve felt unwell and had ultrasounds and bloods these didn’t indicate that my medication might be an issue. But I appreciate your thoughts on this but with Hashimotos I can feel the difference when I experience a flare/attack but they do past.

Hi Miss FG

I have been diagnosed for three years with hashimotos disease , and i completely understand everything you are saying , every time i have a flare up , or my medication is not right i experience swallowing difficulties to the point where i have to try and swallow quite a few times to get things down, not so much with fluids more food. its so uncomfortable its just puts you off eating all together, although now used to it it is still frightening. I get really aching joints, and generally feel like i have flu really bad fatigue , bad pain at back of neck and shoulders . Flares in the winter are more common for me and when my TSH is not right or has shifted therefore my medication maybe not enough or too much (i take Levothyroxine never had T3 treatment), i recently had my Vitamin D looked at which is low so i supplement. I swear by spinach, loads of blueberries, lemon juice and orange juice smoothie when i feel like this makes me feel loads better the next day and eat a good amount or though not too much Brazil Nuts . Lemon in hot water is also a good for me.

It happens every so often normally when i have bouts of massive stress or axiety or when meds are off. Its a constant battle to get levels just right. My doctors are still changing my medication up and down three years down the line and im still having bloods every four months . I get really depressed with it all to be honest. I try and remain postive but this is a very trying disease . My thyroid was nodular and diffuse on scan only had 1 .

Just wanted to say totally get it! And please dont feel like your on your own i get exactly the same symptoms. Its comforting to me to know someone else also gets the swallowing issues due to a goitre i can actually feel it swollen too. Try the smoothie see if it helps. 100% right though no one understands fully unless they have experienced it themselves. Are you on Levothyroxine?

X

MissFG profile image
MissFG in reply to

I totally get what your saying PinkLady164 and feel for you.

The swollen thyroid is one of the worst symptoms I struggle with and always have. The other is tremors in my body which is when I know I’m not good.

I’m on T3 only now and it’s been a life saver and brought back a good quality of life the majority of the time. Just occasionally atm and 6 months ago I had my last one. If I post on here it’s also like a diary for me to look back on and fir great advice.

I waited 12 months of being pretty sick and not capable of anything really. So I began sourcing and taking T3. Yes it can feel scary but when your desperate you’ll try anything. And when so many here have found it helped I thought it was worth a go. With thyroid disease it’s definitely trial and erode finding what works and what doesn’t for you.

Please keep going and don’t be fearful of trying something that has helped others but not available on the NHS. Unfortunately they are very limited and overseas T3 can be easily available over the counter without prescription. So when taken carefully as with other thyroid medication you may find it could help you

in reply toMissFG

Thankyou MissFG for your help and advice , and I'm sorry to hear that you are still struggling, i also get tremors from time to time . it absolutely is trial and error as everyone is different and react to different types of treatment , we will just have to stay strong and carry on, and retain that bit of hope that one day we will find relief from this awful disease and find a balancethat works. X

CapnM profile image
CapnM

very interesting post, learnt more from this post than a year of reading, all of it very pertinent to some recent challenges. thanks for kicking it off and hope your flare passes, i had forgotten these where a thing to look out for too.

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