Private Endo a Let Down: Thank you for everyone's... - Thyroid UK

Thyroid UK
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Private Endo a Let Down

Essexmum
Essexmum

Thank you for everyone's support here on the forum, including the Administrators.

Just for info, I was told by nhs endo in July 2018 to go to a private endo for a private prescription for T3. I did this but it was a waste of money, I should have put my money down the drain, endo said I had wrong diagnosis & asked me to come off medication so he can test bloods in 3 months time to which I refused. After the whole horrendous experience with private endo I had my prescription & I am so much better on t3, althgh feel a slight increase in dosage will help.

I need a repeat prescription but private endo was on holiday. He has returned & I received a letter today advising there have been discussions over best practice & he cannot provide a private prescription unless I see him privately. Apparently it is not reasonable for patients to receive care from nhs endo while receiving treatment (t3 prescriptions) from private endo. I checked & asked the secretary & the endo about this before I made an appointment.

I have ordered my own T3 from overseas today as like many I cannot afford to see a private endocrinologist & pay their inflated fees.

I see the nhs endo at the end of January & i'm wondering what they will at now I'm taking t3.

Rip off Britain comes to mind. Along with care for only those who can afford it!

One things for sure, I will not stop taking t3.

Thanks for listening, moan over, although so angry when I got the letter!!

11 Replies
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shaws
shawsAdministrator

It is not a crime to source our own thyroid hormones and at least we have the benefit of knowing what suits us or what doesn't. There is far more experience on this forum than most endocrinologists will deal with in a lifetime.

I buy my own T3 now as it was withdrawn in the UK but the House of Lords is looking into this as some of us have a 'need' for T3 as we cannot convert T4 into T3 or just become more unwell on T4.

Quite a number of Researchers have found that many need a combination of T3/T4 to feel well.

T3 is a necessity for many of us but how the professionals can deny it, I don't understand.

I treat myself and get a yearly blood test. If I felt unwell I'd have a blood test.

By reading on this forum, and asking questions, the responses from many members are far superior than any doctor or professional, in that we suffer and we know full well when symptoms are being relieved or are relieved.

Essexmum
Essexmum
in reply to shaws

Thank you Shaws, I couldn't agree more. I wish I had looked and found this forum years ago. The information and guidance is so much better than I have received from any endocrinologist and I no longer feel I'm dealing with this alone.

shaws
shawsAdministrator
in reply to Essexmum

Support of others who've gone through the 'system' or are doing so at present and not improving, yes, this support we get from members is second to none. It's thanks to TUK that I am now well as at the beginning of the diagnosis we don't quite know what is happening especially if you're prescribed a replacement hormone and are really surprised that you feel no better or even worse.

SlowDragon
SlowDragonAdministrator

Write to your own MP, Lord O'Shaughnessy, Lord Hunt of kings Heath

theyworkforyou.com/search/?...

It's completely unacceptable for NHS endocrinologist to say you need T3, but not prescribe

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...

DIO2 gene test article

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

DIO2 test

bluehorizonmedicals.co.uk/t...

Essexmum
Essexmum
in reply to SlowDragon

Thank you SlowDragon, I will write a letter and in the New Year I will arrange to have DI02 test and if positive that will add more weight. Thank you for the links, appreciate those, very helpful.

Essexmum
Essexmum
in reply to SlowDragon

I've just seen the DI02 test is currently reduced in price, I'll definitely be ordering. Thank you again.

shaws
shawsAdministrator
in reply to Essexmum

You can also become a member of Thyroiduk who are one of the support groups who is doing sterling work at keeping us at the forefront to try to change attitudes of doctors/endocrinologists and they put me on the 'right road' so that I am now well. They do all the hard work with only three staff especially when liothyronine was removed from prescribing instantly and without any warning and causing immense stress/worry by those who did have it prescribed.

Unfortunately, a doctor (not an endocrinologist) who actually knows about how to diagnose without blood tests but symptoms alone are now few and far between because the medical profession seem to no longer know any clinical symptoms at all nowadays. Previously we were diagnosed upon them and given a trial of 'natural dessicated thyroid hormones' which the Associations have now deemed not to be prescribed and also have made statements about the product in use, safely, since 1892 and is still sourced at the present day by quite a number on the forum. So instead of having options, i.e. NDT, levothyroxine, or liothryonine it has been whittled down to levothyroxine alone by the removal of NDT and T3 from being prescribed. The result is that members have had to source their own to enable them to recover their health.

thyroiduk.org.uk/

Essexmum
Essexmum
in reply to shaws

Thank you Shaws, just realised I hadn't joined! I'll be joining Thyroid Uk today, you're quite right about the work they do and I need to show my support by becoming a member.

shaws
shawsAdministrator
in reply to Essexmum

Lyn Mynott started TUK and it all the action comes from her Office which is Garden Shed in her garden. It has taken over her and family's life I'm sure and thankfully she has two spirited members who support her.

thyroiduk.org/tuk/About_Us/...

Go girl Go!

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