Autoimmune Thyroiditis flare ups.: Hi, I have a... - Thyroid UK

Thyroid UK

137,149 members160,828 posts

Autoimmune Thyroiditis flare ups.

Benadrove5 profile image
23 Replies

Hi, I have a flare up of Autoimmune Thyroiditis does anyone know how long this can last i’m In so much pain in my neck back and shoulders, is there anything I can do myself to help this.

Thank You.

Written by
Benadrove5 profile image
Benadrove5
To view profiles and participate in discussions please or .
Read more about...
23 Replies
greygoose profile image
greygoose

As far as I know, autoimmune thyroiditis does not have 'flare ups'. People talk about Hashi's 'flares', but that is not the same thing as a 'flare up' such as you might have with arthritis, or something.

A Hashi's flare is when the immune system attacks the thyroid, killing off some of the cells, and the dying cells dump their store of hormone into the blood stream. This causes levels of FT4 and FT3 to suddenly rise temporarily, and the TSH to then drop. This may cause hyper-like symptoms, but doesn't always. It sometimes causes people to feel much better, rather than worse. So, what you're experiencing at the moment, doesn't sound like a Hashi's 'flare' - I prefer to call it a Hashi's 'hyper' swing, because that is more descriptive of what actually happens. It sounds more like you are under-medicated. When did you last have a blood test? Perhaps it's time for another one? :)

Benadrove5 profile image
Benadrove5 in reply to greygoose

Hi, i’ve Just had my bloods done they are on here already.

TSH 1.39(0.3 5.0)

FREE T4 13.1(7.9 16.0)

FREE T3 4.8(3.8 6.0)

TPO 1155 (9)

It was my GP who told me I had Autoimmune Thyroiditis and ordered a scan which is due on 14th Dec.

Thank you.

greygoose profile image
greygoose in reply to Benadrove5

You do have autoimmune thyroiditis, your high antibodies say so. But, you have not had an autoimmune thyroiditis 'flare', your results do not say that. They are quite good, actually. Your FT4 is over mid-range, and your FT3 is just about mid-range. But, they are possibly too low for you, and you need an increase in dose.

Had you had a flare, your TSH would be suppressed, and your FT4 and FT3 well over-range. :)

SlowDragon profile image
SlowDragonAdministrator in reply to Benadrove5

Good that GP has organised an ultrasound scan

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Your antibodies are high this confirms cause is Hashimoto's, also known by medics here in UK more commonly as autoimmune thyroid disease.

About 90% of all primary hypothyroidism in Uk is due to autoimmune thyroid disease

Essential to test vitamin D, folate, ferritin and B12.

Ask GP to test at next appointment. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's very often affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) and this can cause food intolerances. Most common, by far, is gluten.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

But don't be surprised that GP never mentions gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Benadrove5 profile image
Benadrove5 in reply to SlowDragon

Hi, just had a 3 month corse of Folic Acid my Vit D level is 83 had B12 injection 2 weeks ago my GP refused to do bloods for ferritin and said I was’nt anaemia..but I go get problems with my stomach and tummy with severe constipation, am feeling so uncomfortable with this neck and pain in my body.

Thank you so much.

SlowDragon profile image
SlowDragonAdministrator in reply to Benadrove5

Contact Thyroid UK for list of recommended thyroid specialists

please email Dionne at

tukadmin@thyroiduk.org

You likely need to start on Levothyroxine

Going strictly gluten free can dramatically improve tummy issues for some

Supplementing vitamin D, magnesium is often needed too. Can be helpful with constipation too

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

Do NOT supplement any vitamin K if you take any blood thinning medication

drsinatra.com/vitamin-k2-su...

Vitamin C and bones

healthimpactnews.com/2018/d...

Calm vitality magnesium powder is cheap and easy to use. Best to start slowly with small dose and increase gradually until get desired result

Benadrove5 profile image
Benadrove5 in reply to SlowDragon

Hi, forgot to tell you i’m On 100mcg of Levo already.

Thank you for all this info so helpful.

SlowDragon profile image
SlowDragonAdministrator in reply to Benadrove5

Then you might need small dose increase in Levothyroxine.

But testing vitamins is next step

Coeliac blood test and trying strictly gluten free diet too

Benadrove5 profile image
Benadrove5 in reply to SlowDragon

Hi again, my Alkaline phosphatase is 147 (30-130)

Calcium 2.46 (2.2-2.6)

Adjusted Calcium 2.56 (2.2-2.6)

I don’t know if you can advise on this as Alkaline phosphatase is high the doc ignores this.

KKristine profile image
KKristine in reply to SlowDragon

Ive been on gluten/dairy/soy free for 6 month, my antibodies still are going up...so i thought theres no point to carry on. Had few gluten cookies and crackers and now i have such a flair up...my thyroid is throbbing and pulsating, my lypmh nodes hurt again. i do not enjoy gluten free because it has to be organic, and it costs too much and taste rubbish. i really struggle, dont know how long i have to be on this diet. Ive been doing leaky gut healing diet for 6 month, and supplements etc. i gave 100% no cheating but theres no improvement...want to cry

greygoose profile image
greygoose

Yes, I know that. But that is not a 'Hashi's flare'. The OP needs an increase in dose.

Murphysmum profile image
Murphysmum in reply to greygoose

Sorry to butt in here greygoose but what are these “phantom colds” then? Do we know?

I’ve never even considered this before, but for the last five years I’ve had these almost colds regularly, in fact, I have one now! I always assumed it was because I have two young kids, therefore exposed to every bug going, and because I had a flu vaccine with son no.2, so I thought I just wasn’t getting a full blown cold.

So is this maybe a hashis/thyroid thing then? Makes sense..

greygoose profile image
greygoose in reply to Murphysmum

It's all part of being hypo, I believe. I can't tell you anymore than that. :)

I've felt like that off and on - thinking I'm getting a cold or something - which then disappears. Thought it was just a cold virus "Trying it on"!!!

But isn't a hyper swing or whatever (a case of swings and roundabouts with this illness anyway!) would be more like the heart racing and feeling hot?

greygoose profile image
greygoose in reply to

Some people don't feel anything when they have a 'hyper' swing. They just suddenly find they have high levels of thyroid hormone. Other people get hyper-like symptoms. I just felt incredibly well - hair grew, lost weight, had bags of energy. Some people might get racing hearts, but not everybody. And, as for feeling hot, I've always felt hot, even when I was very hypo. It's different for everybody.

in reply to greygoose

Think I'm a bit more like you. the usual flushes I've had for years seem more intense. And when they do come I sometimes feel more energetic afterwards

greygoose profile image
greygoose in reply to

I've never had hot flushes. Just generally hot, as opposed to being cold, all the time. In fact, I didn't even have hot flushes during the menopause - whenever that was. :)

Benadrove5 profile image
Benadrove5 in reply to

Hi jnetti, I often feel like that too but then goes away but does anyone on here get eye problems, sinus problems or coughs I had a hyper couple of days in the week when I could’nt stop my brain from racing then back to normal a couple of days later so many different things popping up am awaiting a thyroid scan.

in reply to Benadrove5

I get swollen eyelids when I'm more hypo than usual, and sometimes my eyes don't seem to focus as well as they should.

Benadrove5 profile image
Benadrove5 in reply to

Hi that’s how mine are no 2 days are the same with my eyes, also the doc said I have’nt got a goitre in my neck so it could be in my chest which is causing me to have a cough????

greygoose profile image
greygoose

That's absolutely true, we all have our own set of symptoms. And I'm not trying to deny her symptoms, I'm just questioning her vocabulary. What she is experiencing is not a 'Hashi's flare'. A 'Hashi's flare' is temporary hyper. The OP is very hypo at the moment. Unless we all use the same words in the same way, no-one can know what anyone is talking about. In any discussion you have to first define your terms of reference. I really do not think you understood what I said above.

greygoose profile image
greygoose

OK. I'm sorry to hear that. But, the OP has a TSH of 1.39 and Frees below mid-range. So, she is not having a Hashi's flare, she is under-medicated. She has Hashi's, but is in a hypo phase at the moment, not a Hashi's flare. :)

greygoose profile image
greygoose

But I wasn't talking about that. So, I don't really know why we're arguing. We're on the same side! lol

You may also like...

Autoimmune thyroiditis

I have been sufferring with autoimmune thyroiditis for fifteen years. None of the treatments have...

Autoimmune thyroiditis

I am new and I have been told by a GP I have tested positive for autoimmune thyroiditis due to...

New here untreated and undiagnosed Autoimmune Hashimoto's, got my first flare up

believe me im losing my mind, has anyone else been through an untreated flare up and if so what...

Autoimmune thyroiditis and covid-19

morning . I am not sure whether you will be able to help me but I hope you can direct me to someone...

Autoimmune thyroiditis - Hashimotos or Graves?

My understanding is that they indicated autoimmune thyroiditis and I assumed that meant...