Blood tests

[trisha7]

Hi all I have just seen a practitioner to ask for a referral to endocrinology as been refused before by GP I have hashimotos (about 5 yrs) and type II diabetes (9 yrs). The Hashis is the worst. I have never seen an endocrinologist.I have a rotten flare up and living half a life at the moment. I have been booked for a blood test before referral to endo considered and am booked for blood test in 17 days time but at 1.40pm. I know people on here advise early morning. Should I change to an early morning one a further week in the future (26 days hence) or just not eat till 1.40pm test done? Still only testing TSH! Thanks.

[radd]

trisha7,

An endo might help you, or not! People with Hashi have two separate but intertwined issues - hypothyroidism and autoimmune disease.

The medical community generally only consider the thyroid hormone deficiency (and don’t always do that very well). The autoimmune side is not understood and ignored, and the sad truth is this accompanying chronic inflammation can negatively effect our meds and cause further autoimmunity.

Doctors then blame patient non-compliancy or say symptoms are in our heads, but many members have found improvements through taking steps such as adopting a gluten free diet and supplementing natural anti-inflammatories. A great read for further info is The Root Cause by Isabella Wentz.

Another thing they fail to recognise is the need for optimised levels of iron and nutrients which commonly fall in hypothyroidism. It is a vicious circle.

Thyroid med timings can be found here. ..... healthunlocked.com/thyroidu...

[trisha7 in reply to radd]

Thank you. I have gone onto a gluten free diet. My daughter has coeliac so I had a head start adapting recipes.

[Jaydee1507 Administrator]

I would recommend rebooking for a 9am or earlier appointment even if you have to wait longer. You need your TSH to be as high as possible.

Have you recently had tests for ferritin, folate, B12 & D3? What were the results?

What supplements are you taking?

Have you had your FT3 tested?

Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

I'd recommend getting these levels checked prior to your Endo appointment so you can take them with you.

Endo's are often diabetes specialists and know little about making us well with hypo.

[trisha7 in reply to Jaydee1507]

Hi. they won't test anything other than TSH. So frustrating.I take ferritin supplements, b12 and apple cider vinegar gummies and adcal D3 for osteoporosis . I take 125mcgs of Levothyroxine.

Maybe I should change to 11 Sept for blood test for early morning slot the n. Thanks

[Jaydee1507 Administrator in reply to trisha7]

The link is above for private testing which is what most members here have to do to see the results they need to to get well.

[SlowDragon Administrator]

No point just testing TSH

Get FULL thyroid and vitamin testing done privately BEFORE consultation

Vast majority of endocrinologists are diabetes specialists are generally useless for thyroid

Have you requested a specific thyroid specialist by name?

List of thyroid specialists and endocrinologists

healthunlocked.com/thyroidu...

is your diabetes type one or type 2

Are you on strictly gluten free diet and/or dairy free diet

What vitamin supplements are you taking

How much levothyroxine are you currently taking

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

TSH has a pronounced circadian rhythm

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

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

List of private testing options and money off codes

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

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[trisha7 in reply to SlowDragon]

Sadly GP will not test anything other than TSH and I have asked for full range many times. This is one reason for asking for ref to endo. Thanks for reply.

[SlowDragon Administrator in reply to trisha7]

So you will need to test privately BEFORE consultation….otherwise first (and often only) appointment is waste of time

Thousands of U.K. thyroid patients forced to do so in order to make progress

Just testing TSH and Ft4 is completely inadequate

[trisha7 in reply to SlowDragon]

GP will only test TSH.. I have argued the case many times but they don't budge!

[SlowDragon Administrator in reply to trisha7]

Yes we are well aware of that

You need to get private testing done yourself

[trisha7 in reply to SlowDragon]

I'm on 125mcgs levothyroxine. I take b12, ferritin, Adcal D3 and apple cider vinegar gummies. I have recently started a gluten free diet but struggle to completely give up dairy. I do not eat meat or fish and have a lot of plant milk but occasionally have cows milk and cheese.I thank you for the advice and links. I have rebooked my blood test for early morning. Kind regards.

[SlowDragon Administrator in reply to trisha7]

Apple cider gummies sounds a very bad idea for your teeth

Apple cider should be diluted in water and drunk with straw to avoid destroying tooth enamel

[trisha7 in reply to SlowDragon]

It was a quick fix to the alarm at hair loss and I do have some in liquid form. The gummies are tasty. Your advice is noted! 😊

[Bluebell999]

My gp referred me to an endo after several years of reducing thyroxine for hashis because of being out of range after each blood test.

The endo did not want to know, no appointment, just a dismissive letter to the gp.

After a while I asked for a different endo referral at another hospital. I had looked at the list of thyroid specialist, (also looked for private endos just in case) and had a very good response from one of his team.

She organised tests, including T3, and antibodies, which only the hospital seems to be able to do. She also ordered an ultrasound.

I have now swung from hypothyroid Hashis to hyperthyroid Graves with a goitre with nodules.

If at first you don't succeed, etc, etc.....

[trisha7 in reply to Bluebell999]

Thanks for reply. That's a big change for you. As you say, we keep trying!