What test do i need for antibodies? : Hi everyone... - Thyroid UK

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What test do i need for antibodies?

birkie profile image
9 Replies

Hi everyone ❤️

Just like a bit of advice on some private bloods I'm going to have done as my surgery have missed out on many, vitamins /minerals, calcium, magnesium, foliate.. I also want cortisol done to.

I also want some antibodies done but don't know what that would be 🤷‍♀️ any help would be grateful ❤️ also which testing company is the best👍

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PurpleNails profile image
PurpleNailsAdministrator

I’m not sure knowing your level of thyroid antibody level is going to be of help.

Testing thyroid antibodies is  helpful for diagnosing the reason for abnormal levels. 

Your history is that your levels were uncontrollable high and you have total thyroidectomy.  

When the thyroid is in tact it useful to test TPOab (Thyroid Peroxidase antibodies) TGab (Thyroglobulin antibodies) as they signify autoimmune.

Once the thyroid is gone the substances that are released from thyroid and cause the creation of the antibodies to clean them up should dwindle.  

To confirm suspected Graves you are looking for positive:TRab (TSH receptor antibodies - measures stimulating, neural & blocking antibodies)TSI (Thyroid-Stimulating Immunoglobulin - simulating only)

TPO & TG are included in lots of the bundles, companies listed in thyroid UK have. 

TRab is specialist & available by Medichecks but it’s an expensive test, and must be by venous draw, not DIY fingerprick. 

thyroiduk.org/help-and-supp...

birkie profile image
birkie in reply to PurpleNails

HiI'm not looking for thyroid antibodies 😉 after full thyroidectomy2019 my surgeon told me I would loose the antibodies in around 3/6 months, I've heard that's not fully true 🤷‍♀️ but as I don't have a thyroid I know there's no attacking it anymore, but I'm more interested in antibodies attacking other parts of the body.

I had graves ( auto immune) i have colitis, fibro, cfs, ME, got a diagnosis of primary hyperparathyroidism in 2020, I'm honestly interested to know if my antibodies could still be attacking parts of my body, bowles, Parathyroid, I honestly feel like I'm having flare ups, I sweat profusely, my body feels like it's been battered with a bat, my knees/ankles are very swollen, I've never recovered since my thyroidectomy 😢

PurpleNails profile image
PurpleNailsAdministrator in reply to birkie

Ahh - when you wrote “I also want some antibodies done but don't know what that would be” I assumed you meant thyroid.

 I’ve no idea what antibodies you need to test for.  I expect there many & it a case of suspecting a symptom is the cause of an autoimmune issue & testing for that related or most group related type of antibodies.

This is a list of immunology test…mft.nhs.uk/the-trust/other-...

This is also a useful site for explaining about blood test & what they indicate

labtestsonline.org.uk/condi...

Jaydee1507 profile image
Jaydee1507Administrator in reply to birkie

You really just need more thyroid hormone. The main things we need tested are TSH, FT4, FT3, ferritin, folate & B12, D3.

Magnesium is not necessarily a good reflection on what is bound in your tissues, its just whats in your blood so unreliable.

Several companies offer standard thyroid packages including the vitamin tests that we require - Medichecks, Blue Horizon etc

If you want to go down the cortisol then Regenerus are the lab that does the 4 point salivary test.

thyroiduk.org/help-and-supp...

There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. No charge for blood draw in clinic. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

If you were to test antibodies and they were positive there isn't much you can do other than trying a strictly gluten free diet.

birkie profile image
birkie in reply to Jaydee1507

Just a note, when I was rushed into hospital in 2015 bleeding from my back passage the gastro had no idea what was wrong with me, he scratched his head for 6 days did every test imaginable, camera down/up.. No infection no bacteria, just told me he was lost as to what was causing the very real symptoms I was having, he reverted to the emergency scan I had on admission and told me my bowels had gone through some trauma but I'm lost as to what, he did say it could have been something that I'd eaten that effected my large and small intestines, then after another 5 days said I think you have reactive colitis I'm putting that in the report.On discharge he prescribed me steroids 4 months supply, Wow those 4 months were the best I've ever felt no body pain, no bowle pain, no insomnia felt fantastic, then I had to ween off them and everything returned 😢 I was so desperate to have that feeling back I asked my gp if I could go back on them, he refused but I wondered why I felt soooo well on steroids 🤷‍♀️

Jaydee1507 profile image
Jaydee1507Administrator in reply to birkie

That is a known effect of steroids for some people, I'm not scientific enough to be able to explain. You are simply undermedicated for hypothyroidism and steroids won't fix that in any way.

birkie profile image
birkie in reply to Jaydee1507

But even when I was fully medicated on T3, TSH at 0.05 T3 5.3 I still felt rubbish, the TSH of 0.05 prompted the gp to take me off T3 putting me back on T4... Big mistake as my blood work plummeted, I fought to get back on T3 and I'm now having to start climbing the wall again, starting on 10mg for 2wks and trilating up ,im now on 25mg T3👍 getting bloods done again in 5 wks... If the surgery agree to do them😠 aiming to get TSH 1 or under T3 5.3 again, but gp doesn't like these levels and always tries to get me off t3😠 as I tried explaining I'm not over medicated as my T3 is in range (give me strength) but as ever he just focuses on TSH... 🤷‍♀️

SlowDragon profile image
SlowDragonAdministrator in reply to birkie

GP is not qualified to be managing you

On T3 when adequately treated your TSH is highly likely to be around 0.01 - 0.04

TSH of 0.05 prompted the gp to take me off T3 putting me back on T4..

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

birkie profile image
birkie in reply to SlowDragon

Yes slowdragon spot on, 👍and the only reason I agreed with the gps stupidity was because of the symptoms of, weeing for England, utter thirst, bone pain, vibrations in lower legs, headaches, feeling sick(nauseated) irregular heart beat, palpitations, sweating, body pain(all symptoms of a parathyroid problem to which I had the diagnosis in 2020) but gp totally ignored that and went straight for the t3, saying all above symptoms would go when I'm off T3, they didn't and my bloods went south😠 took me 3 months to get back on T3 and apart from that mix up in my meds on last test may 2nd I managed to get to 25mg,but I'm still having bad bowle/stomach problems even though I'm taking the powder out of the capsules, I'm back on 25mg now still having diarrhea /cramps, my colonoscopy awful tho it was showed it was normal no sign of cancer. Also duty to the last bloods may 2nd the gp actually stopped my 25mg dose and only prescribed 10mg one to be taken each day😂 what a joke, he even said we have the right as gps to stop any medication we feel is not good for the patient 😠 you just can't make this💩 up, I've got my letter to practice manager complaining of the treatment I'm receiving in relation to my T3 medication and the distribution of it to me👍

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