Has anyone had this test?: Hi there, I was... - Thyroid UK

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Has anyone had this test?

13 Replies

Hi there,

I was referred to the endo by my GP (she was a little reluctant) and I saw him about 6 weeks ago. I had TPO antibodies above range and although since researching and help from your good selves..I know this means Hashimotos, not much was said other then may develop problems. I did ask him if this was causing my symptoms and he said it was a good question and would order a few more tests eg gluten intolerance. I got the feeling that he didn't think the antibodies signified too much as other levels in range. But at the time I just nodded and we left it as he would be in contact. I have basically been waiting to hear from him (I didn't even ask him how long - how not clever am I?) and kinda wish I'd asked a few question lol

It's been so long so I rang to chase yesterday...as I feel I just want to implement some change sooner. Feeling ill and just waiting seems really stupid when I ccould be doing something like cutting out gluten. At least knowing how much longer to wait would set my mind at ease. Seems theres a bit of a confusion and my endos secretary is going to ring me back next week to see if endo or GP should have odered the bloods. She did say one test is a 6-8 week waiting list (can't remember what she called it) but she said they inject you with something and take a sample every hour?!? okay...not sure what this test is for? Again I forgot to ask? (I think I should be armed with a list of questions at all times haha)

Has anyone had this test? Could anyone tell me what it's for and was it sore? And how it went? I have to be honest I'm not great with needles at the best of times 😳

Any info and experiences you've had would be great 😁 thanks

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13 Replies
shaws profile image
shawsAdministrator

If you have antibodies above ranges, you should have been prescribed levothyroxine. Your antibodies are attacking your thyroid gland and you will eventually become hypothyroid.

Email louise.warvill@thyroiduk.org.uk and ask for a copy of Pulse Online article by Dr Toft and discuss with your GP. Dr T recommends starting levo to 'nip things in the bud'.

With hashi's I believe the output of your thyroid hormones are varied (too much or too little).

I don't know what tests the Endo is requesting but he should have prescribed levo at the very least.

P.S Dr Toft was President of the British Thyroid Association

in reply to shaws

Hi shaws, thanks for replying ☺️

I've seen comments on here before and has made me wonder whether he should have medicated me.

He is doing more tests so at least it's not the end of the story!

He said something along the line of medicating when levels are not out of range is debabt as to whether it does 'nip things in the bud' and medicating when I may never develop thyroid problems....although I did think thyroid antibodies meant u already had thyroid issues?

I'm just holding on at the moment for the next round of tests and I'm going to take it from there...I hate this waiting game 😔

Mind you I've been up and down with symptoms since before I had my kiddies so a few more weeks won't make too much difference I hope!

helvella profile image
helvellaAdministratorThyroid UK in reply to

Thyroid Peroxidase antibodies and Thyroglobulin antibodies indicate that some of these substances (which are usually found only within the thyroid) are present in the bloodstream.

Why they are in the bloodstream is not identified by the antibody tests. The most common reason that people have enough of these substances, and hence antibodies, to be regarded as positive is indeed autoimmune thyroid disease. But you can also have them after any damage to the thyroid - which could include surgery and external physical impact (seatbelt in a collision).

in reply to helvella

Ahh ok that's interesting to know!

I haven't had any trauma to the thyroid as far as I'm aware. My brother was diagnosed last year..and id bet money on my other brother and mum too...I have sent them off to be tested!

For me...even the answered I have so far make me feel a little better! For years I've just been told I'm depressed and I'm worn out because I have children...

Could be an insulin stress test for adrenals. Usually done if you "fail" short synacthen test. Made me really ill. Or it could just be a synacthen test.

in reply to Angel_of_the_North

Thanks for replying ☺️Ohh ok...not sure...this is the first test like this I've had..only had a morning fasting blood test a few months ago!

He did mention the adrenals.

What is the synacthen test for? I've never heard of it? My heard of the stress test either...oh I wish I'd have asked now 😏

Angel_of_the_North profile image
Angel_of_the_North in reply to

It tests cortisol output in response to an ACTH-stimilating injection. Apparently it's very hard not be normal, but I managed it! Still didn't get any treatment, though.

Unfortunately, a bit like a TSH test, it only deals with what happens when your body gets the stimulant, and ignores whether or not your brain is capable of producing enough on its own. So it'll flag up if your adrenals are not producing the right amount of cortisol, but not if the problem is with the hypothalamus or pituitary.

in reply to Angel_of_the_North

Ahh ok, he did say about the adrenals and he said my cortisol was low but within range 😏

So your results didn't come back normal? And nothing was done?

Oh no...have you managed to find out what's causing your symptoms?

Angel_of_the_North profile image
Angel_of_the_North in reply to

It was 30 years ago! I just gradually got better on my own using adrenal support. mediation. lots of rest etc etc, but still not quite right. The NHS only believes in full blown Addison's disease or Cushing's disease. so if your cortisol is one point into the normal range, there's nothing wrong with you. After the synacthen test comes MRI or CT scan (for adenoma, I assume) and insulin stress test.

in reply to Angel_of_the_North

Ahh sounds like you've had a lon g road to recovery 😔

It does seem very black and white (no 50shades of grey in between) one point either way can't surely mean the difference between having and not having a disease 😕

ROMM53 profile image
ROMM53

Sounds like the short synacthen test, to test for Addisons disease.

It was ok- I've had it done- couldn't have been less bothered about the needles etc at the time , was just so ill, I wanted a diagnosis quickly and to recover my health ASAP.

I ended up paying privately for this-£800, so I'd advise you to have the test done if your endocrinologist is offering it-just to rule out Addisons really.

Addisons/ Adrenal insufficiency is rare, to put it into context :)

in reply to ROMM53

Hey there Rach67

Ahh right ok! I should have your comment before I replied to Angel lol!

Ahh ok yes the endo secretary has said that the notes say to order said test (I cant remember what she called it) there's a waiting list which is fine...but I'm definitely going to go thru any tests he recommends ☺️

You had to pay how much? That's quite a lot of money you poor thing! How did your test go? Did it rule it out for you?

helvella profile image
helvellaAdministratorThyroid UK

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