Help with results: Hi all, I’m not diagnosed with... - Thyroid UK

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Help with results

ElmMuso27 profile image
13 Replies

Hi all, I’m not diagnosed with any thyroid condition but have been tested my whole life. I have chronic urticaria and angioedema and B12 deficiency and I know all the links between the three conditions. I’ve been very unwell for a while and the doctor has done some tests, particularly out of worry about the tingling and numbness in my hands. I’m also extremely fatigued at the moment and almost any task is hard work. I have very little concentration which is unusual for me, especially in my work. But the really odd thing is that I haven’t had any urticaria or angioedema reactions in nearly 7 weeks. This is unheard of. My TSH was 4.4 and my T4 was 11 and now I’ve had my Anti Thyroid Peroxidase level come back at 17.9. The range for the antibodies says 0-100 but things I’ve read online say that any presence of antibodies suggests Hashimotos. Can I get some help from the experts please... you! My gp of course says everything is satisfactory but I want to go back armed with knowledge. I’m lucky that I see a consultant at the hospital so I have two chances to convince someone if I need treatment. Thanks in advance!

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ElmMuso27
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13 Replies
Jazzw profile image
Jazzw

Ok, have just read your last post: healthunlocked.com/thyroidu...

You say you’re allowed to get B12 shots whenever you like (at least, I think that’s what you mean) - when did you last have one? Tingling in fingers is likely to be low B12. I notice you said you didn’t have PA - but actually, you can’t know that for sure because the tests don’t always pick it up. The founder of the Pernicious Anaemia Society didn’t have a positive PA test for rather a long time - and then he did... martynhooper.com/about/

I agree that your thyroid function isn’t looking too clever. Have you had an FT3 test done? If not, it might be worth considering getting it tested privately before you go to see the consultant, because if it’s low (which I think it may well be) it might help persuade the prescribing of thyroid hormone replacement.

ElmMuso27 profile image
ElmMuso27

My b12 was my first go to. I had had an injection then the tingling started 2 weeks in, and had another injection at 3 weeks instead of my usual 8. It helped for a couple of days. I’ve had that for a number of years and am managing it very well and know all the signs and symptoms. I was tested for a lot of things around my b12 deficiency and the conclusion was that we may never know what causes it. Obviously that’s rubbish but nothing at the time came up conclusively showing anything. I asked for an active b12 test which the nhs don’t do and haematology told the doctors just to give it to me when I’m symptomatic. Yes, I’m already geared up to have FT3 done and reverse T3 too. Just wanted to know what everyone else thinks here based on results so far. I have a very supportive nutritionist on my side so she’s the next step!

SlowDragon profile image
SlowDragonAdministrator

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

NHS often refuses to test TG antibodies if TPO are negative

healthline.com/health/antit...

You need vitamins tested

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

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

All thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Come back with new post once you have results and ranges

ElmMuso27 profile image
ElmMuso27 in reply to SlowDragon

I thought I was getting the antibodies test done, is that not what that is? I have the vitamin tests too. They are all in normal ranges.

SlowDragon profile image
SlowDragonAdministrator in reply to ElmMuso27

Essential to test both TPO and TG thyroid antibodies

Most have to do so privately if TPO are negative

10-20% have Hashimoto's and never have raised antibodies

Getting ultrasound scan of thyroid can help get diagnosed

Always get actual results and ranges on all vitamin tests

We frequently see low, but within range vitamin levels

Optimal levels are

Vitamin D at least over 80nmol

Folate & ferritin at least half way in range

B12 at least over 500

TSH over 2.5 is suspicious

Essential to test FT3

ElmMuso27 profile image
ElmMuso27 in reply to SlowDragon

I’ve tested privately for everything using Medichecks. Results aren’t the issue, more the levels in Scotland to medicate really.

SlowDragon profile image
SlowDragonAdministrator in reply to ElmMuso27

Look at gut infections too

Common with Hashimoto's

thyroidpharmacist.com/artic...

TSH110 profile image
TSH110

Check and see if TPO and TG are listed in the results and what results are given with ranges and remember anywhere in range is not necessarily optimal for you with your other tests . If they are not listed they were not tested for.

ElmMuso27 profile image
ElmMuso27

The only thing listed in the results is “Thyroid Antibody Peroxidase” is that TPO? Nothing else. I don’t know if there is more to come and no one at the surgery could tell me either.

SlowDragon profile image
SlowDragonAdministrator in reply to ElmMuso27

Like thousands on here, you need to get full Thyroid and vitamin testing privately

All Thyroid testing should be as early as possible in morning and fasting

ElmMuso27 profile image
ElmMuso27 in reply to SlowDragon

I have done. All the tests possible have been done through Medichecks.

SlowDragon profile image
SlowDragonAdministrator in reply to ElmMuso27

So what was TSH, FT3 and Ft4?

High TG antibodies?

Vitamin levels?

ElmMuso27 profile image
ElmMuso27 in reply to SlowDragon

I don’t have that in me at the moment. I just wanted advice finding a private doctor. I have just booked an appointment with someone now though on advice elsewhere.

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