How can I help myself or should I wait for endo... - Thyroid UK

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How can I help myself or should I wait for endo appt.?

jib70 profile image
5 Replies

Hello again. Sorry to ask this but recently had private bloods done, then NHS scan on longterm multi nodular goitre and GP saying goitre is "growing down" (substernal perhaps?) Private bloods showed low B12 and VitD. Prescribed B12 tablets but also dosing myself with B12 spray. On long waiting list for endo.

My question is what can I do to help myself while waiting for endo? Not on any thyroid meds. Goitre for 20 years but recently seen from GP notes I was dx HYPERthyroid many years ago because GP put me on carbimazole for a while, then told me I had myxodema because of it???

Requested copies of GP tests but all I got was what tests I'd had, no results included at all.

Beginning to think I'm hypochondriac tho' the way I feel can't be normal can it?

Will anything I can do, with guidance from here, affect the results from endo eventually - or am I jumping the gun? Am planning another private test soon to check my B12 .

I do apologise for rambling, hope it is all understandable, Thanks. j x

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SlowDragon profile image
SlowDragonAdministrator

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018

Your past treatment with carbimazole suggests yet another Hashimoto's patient misdiagnosed as Graves

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

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

jib70 profile image
jib70 in reply toSlowDragon

Thanks for replying SlowDragon. Seems I will have to wait till I eventually see the endo

for a diagnosis as I thought. Just impatient with the waiting for appointment and hoping I could actively improve my state meanwhile. I have gone gluten free, will do another test with Medichecks in a week or two and check my results again, hopefully my B12 will have upped with the spray at least, that would be a minor improvement.

Appreciate your help, thanks.

SlowDragon profile image
SlowDragonAdministrator in reply tojib70

Can you add your most recent actual results for vitamin D and B12 and thyroid results too

Are you supplementing vitamin D?

And come back with new post when you get your historic NHS test results

jib70 profile image
jib70 in reply toSlowDragon

The only supplement I'm taking is the B12 1000mcg pills from the GP and a boost B12 spray I purchased.

I meant to ask here about a good VitD supplement but I forgot, (something I seem to do a lot nowadays).

Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply tojib70

You are legally entitled to printed copies of your blood test results and ranges. ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Come back with new post once you have results and ranges

B12 is usually injections from GP. Are you sure you mean B12 or is it folic acid?

Being forgetful is a symptom of low vitamins/hypothyroid

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