Urgent! People from Tayside needed

[lynmynott]

We are looking for people from Tayside who have been having problems obtaining T3 due to the policy of Tayside CCG.

Mairi Gougeon, MSP has organised a meeting with Grant Archibald, the Chief Executive of NHS Tayside on Friday of this week.

Mairi is interested in speaking with people who are having problems obtaining T3 particularly in the Angus North and Means constituency. The more people that Mairi can speak to, the better as she wants to bring their cases up at the meeting.

Please contact Mairi directly at [e-mail] as soon as possible. Please let us know if you do as we are making a list of people who are still struggling to obtain T3.

Lyn Mynott, CEO, Thyroid UK

[Wursty]

Hello lynmynott,

I was diagnosed with hypothyroidism several years ago, after repeated consultations with my GP practice initially dismissed my symptoms as premenopausal or stress related.

Levothyroxine has not cured my symptoms, despite doctors juggling with my dosage.

Research I have read regarding T3 medication seems to suggest that it is beneficial, especially when taken with levothyroxine. I have made enquiries about the possibility of this being prescribed, but have always been told it is not routinely possible in the UK.

Kind regards,

Kirsten Tomlinson

[lynmynott Partner Thyroid UK in reply to Wursty]

Did you ask your GP or Endo?

[Wursty in reply to lynmynott]

My GP. They wouldn't refer me to an endo.

[lynmynott Partner Thyroid UK in reply to Wursty]

Would you be willing to contact Mairi?

[Wursty in reply to lynmynott]

Sorry, yes - I emailed her yesterday, after realising I ought to have replied directly to her!

[lynmynott Partner Thyroid UK in reply to Wursty]

Excellent! We need all the help we can get and I'm sure this will help.

[SlowDragon Administrator in reply to Wursty]

Looking at previous post you have had very poor care over last year with dose of Levothyroxine being almost halved from 125mcg to 75mcg

Leaving you extremely hypothyroid and likely very low vitamin levels

Dose of Levothyroxine should be increased back up in 25mcg steps

Bloods should be retested 6-8 weeks after each dose increase

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose 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)

You need vitamin D, folate, ferritin and B12 tested

Highly likely that some or all of these are now very low as result of totally inappropriate dose reduction in Levothyroxine

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...

For thyroid including antibodies and vitamins

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

Come back with new post once you get results after recent dose increase

Do you have old results from before 125mcg dose was reduced

Start a new post with these results and members can advise if it showed over medication (frequently it doesn't)

Only when Levothyroxine dose is returned to correct levels and all four vitamins optimal....will you know if you need the addition of small doses of T3 prescribed alongside Levothyroxine

[Lalatoot in reply to Wursty]

Kirsten

The situation is different between Scotland and England. Are you in Scotland?

[Wursty in reply to Lalatoot]

Yes, I'm in Scotland.

[Lalatoot in reply to Wursty]

T3 can be prescribed on the NHS in Scotland following a ruling of the Scottish Parliament. That said it is still not easy to obtain a prescription for a number of reasons including the fact that there is little research that underlines the benefit of combination therapy and the cost of £208 per month to the NHS.

You need to have it prescribed by an NHS endo on a trial basis. If your GP will not refer you to an endo then you need to prove to the GP that your health merits a referral. You would need to show that your T3 levels are out of step with your T4 levels and have been consistently and how this affects you.

I think I managed to get T3 as I was able to show that I had been unwell for 4 years on levo and that my Ft3 was only 16% through range compared to 60% for Ft4.