I'm in a blooming Levothyroxine GP pickle again - Thyroid UK

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I'm in a blooming Levothyroxine GP pickle again

Eoperez profile image
8 Replies

Hi,

I am having a right job with GP again, my t3 & t4 came back over range when I had them tested a couple of months ago. GP wanted to drop me straight from 175mcg to 150 but then agreed with me to do alternate days & re-test which I did. These have now come back in range but the GP won't have it that I feel awful and is not safe so she has just sent a text to that effect & said she is writing to endocrinology, funny when I asked to be referred a while ago they refused.

I have a phone appt with a different GP this afternoon but I'm sick of being on this blooming merry go round.

The only thing which has changed is I had a hysterectomy in June.

Any ideas?

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Eoperez profile image
Eoperez
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8 Replies
greygoose profile image
greygoose

Do you have Hashi's?

Eoperez profile image
Eoperez in reply to greygoose

Yes I think I do. It was early 90s when I was a young teen when I was diagnosed and they basically said my body attacks itself!

greygoose profile image
greygoose in reply to Eoperez

Then that could account for your levels going over range, rather than your dose itself. But, frankly, it was so slightly over-range that it really wasn't worth bothering about. Some people just need their FT3 over-range to feel well. It's no big deal. Ranges are only a rough guide, not a cast iron barrier that you mustn't cross.

Have a read of this article and pass it along to your doctor, she might learn something!

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

Eoperez profile image
Eoperez in reply to greygoose

Oh thank you. I told her on the phone this morning that even the last decrease has left me feeling rubbish and there was no way I was decreasing further. I told her I have been dealing with this for 30+ years and that numbers from a lab report do not reflect how I feel. She said she would not force me but then sent a text to tell me it is unsafe!

greygoose profile image
greygoose in reply to Eoperez

Is she referring to your TSH level? Because that means nothing at all if your Free levels are good. She should not be dosing by the TSH, that is the best way to keep the patient sick. There is no harm in a suppressed TSH in and of itself.

Eoperez profile image
Eoperez in reply to greygoose

Yes she will be despite me telling her it has been like that for years! They really have no clue.

greygoose profile image
greygoose in reply to Eoperez

No, they really don't!

If I were you, I'd start another post asking people for links to studies proving that there is no danger in a suppressed TSH. Suppressed TSH does not cause heart attacks or osteoporosis, as they believe. But, put that in the title, so that those that know can comment. :)

SlowDragon profile image
SlowDragonAdministrator

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

After any anaesthetic low B12 is more likely

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 plus both TPO and TG thyroid antibodies tested.

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

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

Low vitamin levels common as we get older too

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 and last dose levothyroxine 24 hours before test

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 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...

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 down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too

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...

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