Anyone else felt like this ?: Hi , wonder if any... - Thyroid UK

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Anyone else felt like this ?

Suegore profile image
10 Replies

Hi , wonder if any one has had similar issues to me ? I went to A &E on 29 th Dec with severe palpitations and chest pains . The hospital were treating me for a suspected heart attack but them discovered my TSH 0.01was extremely low and. t3 17(3.1 - 6.8) and t4 38.9 (11-22)were high I was put on Carbimazole and told to get in touch if I developed a sore throat ! I have since been back to the hospital 3 times with temp and sore throat . One doctor wanted to take me off Carbimazole the other said stay on it ! My white cell count is down at the moment . It is 3 and the neutrophils are 1.4 . I’m having bloods done weekly to check on it . I had a thyroid scan a week ago and also an echocardiogram and had to wear a heart monitor for 24 hours . I feel horrendous still , I had a full hysterectomy 3 years ago and put a lot of the symptoms down to that originally ! Back in November I had horrendous diarrhoea and the doctor thought I had food poisoning , samples came back negative so was probably the thyroid ! I am still having palpitations and tremors in the hand and I feel about 90 ! I can’t sleep and feel so poorly . I’ve been on Carbimazole for 5 weeks now and the t4 is now 22 and t3 is 8 which is still high the tsh is still 0.01 . I am seeing a private endocrinologist on mon eve . I have an appt in March to see one on the nhs but he doesn’t have a very good reputation ! Can anyone tell me how long it will take for me to feel well again as I have been like this for months ?!!

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Wetsuiter profile image
Wetsuiter

I dont know the answer to your question, but I know that Greygoose will come along in a bit and ask what antibodies they've tested (if i ve understood your case correctly, that is)

greygoose profile image
greygoose

Too right she will! lol That should be the first thing they do when they see results like that, if only they weren't so ignorant. You want:

TRAB or TSI to see if you have Grave's

TPOab and TgAB to see if you have Hashi's.

My money's on the Hashi's, because those thyroid hormone results weren't high enough to be Grave's. And, if you have Hashi's, carbi is not the right treatment. The high levels will come down by themselves. But, you can only know by testing the antibodies.

Suegore profile image
Suegore in reply togreygoose

I’ve head all the antibody tests but not had the results yet ! I’ve just been told today on a telephone consultation that the ultrasound showed a multi modular goitre ( it’s not an obvious one, as I don’t have any swelling !)

greygoose profile image
greygoose in reply toSuegore

That sounds like Hashi's, then.

Suegore profile image
Suegore in reply togreygoose

Do you get modules with under active ? I have been told that toxic nodules cause thyroid to become overactive ?

Suegore profile image
Suegore in reply toSuegore

Nodules not modules , predictive text!

greygoose profile image
greygoose in reply toSuegore

You do indeed get nodules with under-active thyroid. In fact, you can have nodules even if you don't have any thyroid problems.

I have been told that toxic nodules cause thyroid to become overactive ?

Not exactly, no. A toxic nodule is a nodule that produces its own hormone. And it's that extra hormone from the nodule that causes you to become hyper. It's not the thyroid itself over-producing hormone, which is the definition of 'over-active'.

But, not all nodules produce hormone. Most of them don't do anything at all.

If your thyroid is swollen - i.e. forming a goitre - it could be because it is struggling to make enough hormone to keep you well. That is to say, under-active.

Suegore profile image
Suegore in reply togreygoose

I'll ask all the questions when I see the endocrinologist on mon and let you know 👍

SlowDragon profile image
SlowDragonAdministrator

Absolutely essential to also test vitamin D, folate, ferritin and B12

These are frequently low with either Graves’ disease or Hashimoto’s

As greygoose says......make sure to get all thyroid antibodies tested

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

We normally recommend getting private blood tests FIRST before seeing endocrinologist....but obviously not time for that now

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

Also request coeliac blood test or test yourself. Loads of kits on amazon etc

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

Both Graves and hashimoto’s patients frequently benefit from removing gluten

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 may slowly lower antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

Suegore profile image
Suegore in reply toSlowDragon

Thankyou for all your information , very helpful .

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