Frustrated & possibly misdiagnosed/undiagnosed?! - Thyroid UK

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Frustrated & possibly misdiagnosed/undiagnosed?!

tigerlily72 profile image
12 Replies

Just been on the phone trying to obtain the results of a blood test I had at the beginning of the week. As I'm a type 2 diabetic and my review is due towards the end of this month I thought they'd tested for my annual Hba1c and cholesterol. I'd also been unwell and had an odd unexplained rash about 3 weeks earlier which, after me emailing photo's to the surgery, I was told was possibly viral.

Apparently they only checked my thyroid which my GP has said was "normal" but I should be re-tested in 6 months. The receptionist told me it was 5.48. I understand above 4 is abnormal?

As well as several other conditions including fibromyalgia I have most of the classic hypothyroidism symptoms and I am often cold with my arms and legs being very cold to touch. This is extremely uncomfortable and I rarely have much energy.

I'm wondering if I should push to be re-tested sooner as I also had a abnormal thyroid result around 2 years ago. Although, when re-tested it had come down to be in a satisfactory "normal" range. I can't help thinking that I do have a thyroid issue. And I'm frustrated I'll need another blood test very soon for my Hba1c!

Any advice or suggestions welcome. Thanks for reading x

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tigerlily72
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12 Replies
fuchsia-pink profile image
fuchsia-pink

Please get your actual results and reference ranges. This will also show what has been tested. I assume they've only done TSH ....

Yes, this is likely to be over-range, but not so far over-range that they will treat you [bonkers yes; cruel - also yes. Why have an upper end of a range and then ignore it]

Suggest you ask for another blood test in a couple of months AND that they test thyroid antibodies. You are more likely to get the thyroid meds you need if you can prove TSH is over-range (but not yet 10), as confirmed by 2 consecutive tests and antibodies are high.

If the GP won't do these tests, I'd suggest you have private testing of TSH, free T4 , free T4 and thyroid antibodies - and if you can stretch to it - key nutrients - ferritin, folate, vit D and B12. Then post the results here and the lively people will help you understand them.

Good luck x

tigerlily72 profile image
tigerlily72 in reply tofuchsia-pink

I only spoke to the receptionist. A nurse was supposed to be phoning me back as I phoned around lunchtime initially and got told my results hadn't come back! They usually only take 2-3 days.

Yes, I think it was only the TSH but still baffled why they didn't do my Hba1c at the same time.

I'm thinking about sending an email to my registered GP with my concerns etc and asking for a re-test sooner, perhaps in 2-3 months.

SlowDragon profile image
SlowDragonAdministrator in reply totigerlily72

See flow chart on top of page two

gp-update.co.uk/Latest-Upda...

What vitamin supplements, if any...are you currently taking?

SlowDragon profile image
SlowDragonAdministrator

A TSH over 3 is too high

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

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies. About 90% of primary hypothyroidism is autoimmune thyroid disease

Ask GP to test vitamin levels and thyroid antibodies

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

tigerlily72 profile image
tigerlily72 in reply toSlowDragon

Thank you for your advice and the links. I just feel so fed up! My blood test was at around 10.20am and I had eaten as not advised not to.

I've had low vitamin D in the past and persuaded them to test me for this based on symptoms and the fact I was also under specialist care and investigation due to my fibromyalgia.

Interestingly, my vitamin B12 at the time came back quite high.

I'm thinking about sending an email to my GP about my concerns and asking to be re-tested sooner. If it's £29 via the NHS for some of these tests I'd be hapoy to pay this and hopefully get more conclusive answers and treatment if needed.

SlowDragon profile image
SlowDragonAdministrator in reply totigerlily72

GP won’t retest vitamin D more than once every 2 years

NHS postal kit test

vitamindtest.org.uk

How low was vitamin D

How much vitamin D are you currently taking?

High B12 can be misleading if other B vitamins are deficient

tigerlily72 profile image
tigerlily72 in reply toSlowDragon

My vitamin D was tested in April 2018 and was 35n/molL. I no longer take vitamin D supplements (with vit K2) as I take apixaban due to a diagnosis of atrial fibrillation.

My B12 (also tested in April 2018) was 1001 which I was told was "slightly above normal".

I currently take the following supplements:

1000mg time release Vitamin C

200mg Magnesium Malate

850mg Green Tea Extract

10000iu Biotin (as my hair was in really poor condition - I'd read it could help hair and nails)

SlowDragon profile image
SlowDragonAdministrator in reply totigerlily72

Absolutely essential to stop any biotin supplements a week before ALL BLOOD TESTS

biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

tigerlily72 profile image
tigerlily72 in reply toSlowDragon

I didn't know that! Thank you. I'm going to have a read of the links you posted.

SlowDragon profile image
SlowDragonAdministrator in reply totigerlily72

Suggest you retest vitamin D

drugs.com/drug-interactions...

No interactions were found between apixaban and Vitamin D3. This does not necessarily mean no interactions exist. Always consult your healthcare provider.

Atrial fibrillation can be linked to low ft3

SlowDragon profile image
SlowDragonAdministrator in reply totigerlily72

Obviously you might not want to take vitamin D that includes vitamin K2

Would have to do your own research on wether vitamin K2 and blood thinners are not recommended

vocalEK profile image
vocalEK in reply totigerlily72

Looks like deficiency might contribute to vascular calcification: ncbi.nlm.nih.gov/pmc/articl...

Vitamin K2-MK7 helps to route calcium to your bones and teeth, avoiding depositing in blood vessels and breasts.

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