Where do I go from here? Referral cancelled - Thyroid UK

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Where do I go from here? Referral cancelled

Dontdoitok profile image

Hi all - new here and losing will to live.

I had a private blood test for thyroid function due to following symptoms: Weight gain despite strictly monitored diet / Stomach problems / worrying amount of hair loss / Exhaustion / Eczema / Joint pains / asthma / Swelling / Inflammation / Food intolerances / Urticaria / Depression / Irregular and heavy periods / all sorts...

My private test showed normal thyroid function/TSH levels but high tgab antibodies. I took this to my GP and they said they couldn't accept the private test.

I asked for GP to replicate test. This took four attempts (first the wrong test was ordered, the second time it happened again, the third time the lab tech decided because the TSH was fine not to test anti bodies)

Finally, I got my results which matched the private test. Normal T3,T4 and TSH. Abnormal antibodies.

I was referred to endocrinology and a week before the appointment, the endocrinologist has cancelled because "25% of the population have raised antibodies and this alone is not cause for me to see her in clinic".

I have told my GP multiple times all of the symptoms listed above - do they not count as signs that something is wrong??

I'm at a total loss because I am constantly in pain, inflamed, gaining weight, on the toilet, in bed, missing any quality of life but feel constantly brushed off and like there's nowhere to go now.

Any advice?

Thank you

15 Replies

Do you have a copy of your results? Post them here and then people may be able to advise

Dontdoitok profile image
Dontdoitok in reply to LMor

Thank you! I think I've uploaded now!

greygoose profile image
greygoose in reply to Dontdoitok

I'm afraid you haven't. :)

SlowDragon profile image
SlowDragonAdministrator

Was test done as early as possible in morning before eating or drinking anything other than water to get highest TSH

Please add results and ranges

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Endocrinologist is correct that they won’t diagnose Hashimoto’s on just high TG antibodies….

High TG antibodies can be caused by other issues….or no apparent reason

Very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Have you had vitamins tested

What vitamin supplements are you currently taking

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

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

bluehorizonbloodtests.co.uk...

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Thank you for your comprehensive help.

Tests were all done first thing in morning, prior to eating and drinking.

I had tests on vitamin D, folate, ferritin and B12 by my GP too - a full screening of all sorts it seems. All came back satisfactory.

Supplements wise I take B12, D3, C, Zinc and Selenium

The other test which was "abnormal" was enthrocyte sedimentation rate of 18 - is this of any help?

Thanks again

SlowDragon profile image
SlowDragonAdministrator in reply to Dontdoitok

Please add actual results and ranges

NHS only tests and treats vitamin deficiencies

SlowDragon profile image
SlowDragonAdministrator in reply to Dontdoitok

mayoclinic.org/tests-proced...

PaulineS profile image
PaulineS in reply to Dontdoitok

The ESR shows inflammation/infection somewhere in the body. Have you had cortisol tested?

SlowDragon profile image
SlowDragonAdministrator

Email Thyroid UK for list of recommend thyroid specialist endocrinologists.

tukadmin@thyroiduk.org

20% of Hashimoto's patients never have raised antibodies

Have you considered a private ultrasound, if GP won’t do one

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Thank you again

SlowDragon profile image
SlowDragonAdministrator in reply to Dontdoitok

Please add actual thyroid and vitamin results and ranges

Welcome!

Oh dear, a miserable experience for you but...

Be assured that things will improve now that you have arrived here...very many of us can vouch for that!

Once we have your labs then the experienced and highly knowledgeable members here will come to your rescue...they helped me when medics failed miserably

I see SlowDragon is "on the case" , so my advice is to follow her advice!

Recovery doesn't happen overnight so be aware that you may need to be patient!

Best...

DD

None of us here accept "normal" ranges. That's why you have been asked a couple of times for the actual test results + the reference ranges. If you don't have them, ring the GP reception and ask for a copy to be emailed to you. It is your right to ask for them and receive them. Also post your private test results, date and reference ranges.

NHS is good at saying "we can't accept private test results" but then not doing the right tests themselves. I use Monitor My Health for a basic thyroid test of TSH, FT3 and FT4 to monitor with because those tests are processed in an NHS lab in Exeter. Harder for them to dismiss that source. Doesn't mean they won't try though.

helvella profile image
helvellaAdministrator

You just might find the article below (and the full paper which you can access) interesting and/or useful.

The normal range: it is not normal and it is not a range

1. Martin Brunel Whyte

2. Philip Kelly

Abstract

The NHS ‘Choose Wisely’ campaign places greater emphasis on the clinician-patient dialogue. Patients are often in receipt of their laboratory data and want to know whether they are normal. But what is meant by normal? Comparator data, to a measured value, are colloquially known as the ‘normal range’. It is often assumed that a result outside this limit signals disease and a result within health. However, this range is correctly termed the ‘reference interval’. The clinical risk from a measured value is continuous, not binary. The reference interval provides a point of reference against which to interpret an individual’s results—rather than defining normality itself. This article discusses the theory of normality—and describes that it is relative and situational. The concept of normality being not an absolute state influenced the development of the reference interval. We conclude with suggestions to optimise the use and interpretation of the reference interval, thereby facilitating greater patient understanding.

dx.doi.org/10.1136/postgrad...

pmj.bmj.com/content/94/1117...

Your TSH for well being needs to be around 1.00. If it’s above 2.5 you’ll be feeling hypothyroidism symptoms. The NHS range for TSH is normally 0.35-5.50 however this is too wide. My private only Endocrinologist explained to me that a TSH above 2.5 is hypothyroidism. So please check your TSH blood results. Then check is your T4 and T3 to see if you’re converting Ok.

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