Seeking Advice on consultant response - Thyroid UK

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Seeking Advice on consultant response

Chillymortal profile image
15 Replies

Story so far: T3 removed and T4 increased (against my wishes). After 6-8 weeks blood test taken. Form requested T4, TSH, T3?

Results returned for T4 and TSH only and a letter asking if I had stopped taking T3. I replied that as instructed I had but queried absence of T3 result. The reply that has arrived states that the lab rejected the request as I was on T4 therapy alone and that there is no means to check free T3 at a cellular level.

I am anticipating a follow up appointment and would like some guidance on what questions to ask, how to get some clarity and satisfaction here.

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Chillymortal profile image
Chillymortal
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15 Replies
jimh111 profile image
jimh111

How do they check T4 at cellular level? T4 enters the cell and is converted to T3 by D2. Thus, for tissues that use D2 to regulate local T3 measuring cellular T4 is as important as cellular T3. Serum fT3 tells you as much as serum fT4 does, neither measures cellular levels. I make a formal complaint if they refuse fT3, it's the only way to bring them into linne.

Chillymortal profile image
Chillymortal in reply to jimh111

Thank you. That’s what they want you to think isn’t it, that it can’t be measured when it can. It’s a nonsense.

greygoose profile image
greygoose in reply to Chillymortal

No, it's not nonsense. It can't be measured inside the cell. A blood test is exactly what it says: a test of what is in the blood. But that doesn't mean that it's not valuable and necessary to test is.

Chillymortal profile image
Chillymortal in reply to greygoose

That’s kind of what I meant. It’s still necessary to test for it surely. Not change the parameters and say we would have to test inside the cells instead.

greygoose profile image
greygoose in reply to Chillymortal

Well, none of that made any sense at all. They were just trying to blind with science. I don't suppose for one minute they believed what they were saying. They just thought you would be so ignorant that you would accept anything they said, because they are the 'experts'. It didn't have to make sense. They haven't yet cottoned on to the fact that patients are becoming more and more informed.

Aurealis profile image
Aurealis

I’m not readily given to anger but your post made me feel angry. How cruel and disempowering all this is. Jimh111’s suggestion is good.

Aurealis profile image
Aurealis

I’ve been thinking about your situation Chillymortal. How do you feel? Are you well? If not then I’d be tempted to say at your follow up appointment that it’s no good, you need to return to taking T3 because your FT3 Level is now too low for you. Oh whoops, they have no evidence to refute your claim... because they didn’t test it! If they don’t do the tests, the only alternative is adjustment by how you feel / symptoms. :)

Chillymortal profile image
Chillymortal in reply to Aurealis

I wish I did feel well. I’ll heed your advice, after all their evidence is flimsy. They are insisting that our CCG will not prescribe T3. Again that contravenes recent NHS advice. It’s a battle of wills.

Aurealis profile image
Aurealis in reply to Chillymortal

Go for it! Good luck !

shaws profile image
shawsAdministrator in reply to Chillymortal

This may be helpful and also tell them you will contact Lord Hunt who was shocked the NHS stopped providing T3 to those who were prescribed:-

healthunlocked.com/thyroidu...

Chillymortal profile image
Chillymortal in reply to shaws

Thank you

shaws profile image
shawsAdministrator

The 'professionals' have misinterpreted the advice about T3 and it should not have been removed from patients. You can tell Endocrinologist/doctor that the case is before the House of Lords about the withdrawal of T3 from patients who were well on it. Send a copy to both:-

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

You need to continue to fight this

Extremely common for vitamin levels to crash right out when T3 is removed

Ask GP for coeliac blood test and to test vitamin D, folate, ferritin and B12

Clearly they MUST test FT3 too

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

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If also on T3, make sure to take last dose exactly 12 hours prior to test

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

New NHS England Liothyronine guidelines November 2018

sps.nhs.uk/wp-content/uploa...

Dossier presented to Lord O'Shaughnessy November 26th

drive.google.com/file/d/1c2...

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

Testing DIO2 gene variation may help with your fight

bluehorizonmedicals.co.uk/t...

DIO2 gene test article

thyroiduk.org.uk/tuk/testin...

Which CCG area are you in?

Your endocrinologist can and should continue to prescribe

Chillymortal profile image
Chillymortal in reply to SlowDragon

North Essex. I’ve already had D102 done but it’s not an issue here. I think the issue is other prescription meds causing conflict. I’m awaiting a private blood test to arrive.

SlowDragon profile image
SlowDragonAdministrator in reply to Chillymortal

This letter from NHS Scotland.....paragraph 4

gov.scot/binaries/content/d...

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