Cynomel t3

[katherine107]

My T3 was stopped by gp last month after being on it for 7 years. Before being prescribed by endocrinologist I saw Dr Peatfield a few times and I have been looking through letters he sent me of where to buy cynomel as he recommended it. The website he gave me has disappeared. It was from Mexico. Does anyone know somewhere else to get it? He said it was very good quality. I know I cannot mention name. He was such a lovely man. Is he still running his clinic?

[SeasideSusie Remembering]

Dr Peatfield has retired.

Your GP cannot stop your prescription for T3. You have to be referred to an endocrinologist who makes the decision whether you keep your T3 or it's de-prescribed . SlowDragon has more information about this.

[katherine107 in reply to SeasideSusie]

Thank you for this. I will message slowdragon

[katherine107 in reply to SeasideSusie]

Slow dragon said as I live in Brighton T3 can be stopped by go. How come different rules for other parts of country?

[SeasideSusie Remembering in reply to katherine107]

Slow dragon said as I live in Brighton T3 can be stopped by go. How come different rules for other parts of country?

Because each area is responsible for how they spend their money I suppose. I really have no idea. Maybe take it up with your MP.

[LindaC in reply to SeasideSusie]

For several months I have tried to make contact with Dr P's usual number.

Does anyone know if his records have been held by someone? I would like mine and, potentially, may need them...

Seasons Greetings xox

[SeasideSusie Remembering in reply to LindaC]

I'm sorry, I have no idea. It's nearly 20 years since I saw Dr P. I used to have to report back to him in writing, do you have any letters exchanged whilst you were consulting with him?

[LindaC in reply to SeasideSusie]

Yes I do and tried those #'s - he's been ill for a while now - just wondered if anyone was dealing with this correspondence/records. Meant to do this for a while but... so much stuff gets in the way.

Thank you for all you do and Seasons Greetings xox xox

[SlowDragon Administrator]

In order to continue to get T3 prescribed on NHS you need to have your clinical need confirmed/assessed by an NHS endocrinologist

GP should not alter T3 prescription - but should refer to endocrinologist BEFORE stopping prescribing

pulsetoday.co.uk/news/clini...

Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists who will prescribe T3

thyroiduk.org.uk/tuk/About_...

There aren't many on NHS.

Are you on Levothyroxine and T3 or just T3?

BEFORE seeing any thyroid specialist endocrinologist we always recommend getting FULL Thyroid and vitamin testing privately

Important that vitamin levels are optimal and, if you have Hashimoto's, gluten free diet often helps or is essential

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)

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies of 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

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Add results and ranges if you have them or come back with new post once you get results

[katherine107 in reply to SlowDragon]

hi, how would an endocrinologist know if i have a clinical need. gp has never asked for blood tests to be done for a long time. also if i found an endocrinologist private who agrees with t3 would i have to pay privately for prescription?

[SlowDragon Administrator in reply to katherine107]

Have you been doing regular private testing of thyroid and vitamin levels?

If GP hasn't been doing them, you should have been testing yourself at least annually

If not done a test, that's your first step. Majority on here use Medichecks or Blue Horizon

A private consultation is about £250

Private prescription currently enables access to cheap T3 from EU...usually Germany. But this looks doubtful to continue after leaving EU. Wether that will be after Jan 31st or end of December 2020, no one knows

Currently 100 tablets of 20mcg Thybon Henning T3 is 31 Euro from Germany

28 tablets of UK 20mcg T3 is £173 (dropping to £165 in January) Down from £258 at its highest about 2 years ago

Obviously this is unaffordable for vast majority of patients on a private prescription

[SlowDragon Administrator in reply to katherine107]

Looking at previous posts, can see you have moved to Brighton CCG area

Brighton currently has blanket ban on any T3 prescription on NHS

So you looking at either private prescription or self medicating

But you still need to regularly test vitamins and thyroid levels

Low vitamins are extremely common on Thyroid replacement hormones

Do you have Hashimoto's diagnosed by high thyroid antibodies?

If you do, strictly gluten free diet helps over 80% of Hashimoto's patients

Even if not Hashimoto's.......As you have Elhers Danlos have you tried strictly gluten free diet

Last dose of T3 should be 12 hours prior to blood test. Splitting T3 dose into 3 doses the day before test

[katherine107 in reply to SlowDragon]

How can Brighton just stop T3 without seeing endo? Do they have different rules to other ccgs. It's terrible

[SlowDragon Administrator in reply to katherine107]

They have made a policy decision not to provide any T3 on NHS.

Yes it's against national guidelines

Lots of questions asked in Parliament.

theyworkforyou.com/search/?...

Parliament - specific Brighton questions

theyworkforyou.com/wrans/?i...

theyworkforyou.com/lords/?i...

But each CCG makes its own budget decisions and Parliament seems reluctant to step in

Brighton CCG is under pressure to follow guidelines

gp.brightonandhoveccg.nhs.u...

The price is falling, so this policy may get overturned

Join Improve Thyroid Treatment campaign on Facebook. Lots of members in Brighton area

It's a closed group, you have to request to join

Liothyronine is "Red" i.e. Don't prescribe compared to "Amber" in next door CCG area

chmsformulary.nhs.uk/chapte...

[MMaud in reply to SlowDragon]

SlowDragon - Do you have links for all CCGs, or do you just happen to have this for Horsham?

I'm in Leicestershire, and curious of their official position at the moment.

Thanks, as ever.

[SlowDragon Administrator in reply to MMaud]

Here you go (I just googled)

If initiated by NHS endocrinologist and patient benefits from addition of T3, then it's allowed

leicestershire.formulary.co...

[katherine107 in reply to SlowDragon]

Why has mine been stopped without warning?

[SlowDragon Administrator in reply to katherine107]

Use that Pulse magazine article to argue that you should remain on T3 until you see endocrinologist.....but Brighton is the most difficult CCG to deal with

You may need to acquire your own supply to cover the gap

[katherine107 in reply to SlowDragon]

Ok thankyou

[MMaud in reply to SlowDragon]

Mea Culpa. Memo to self,.............. Look first!

Thank you SlowDragon.

[SlowDragon Administrator in reply to katherine107]

All CCG areas have policy that T3 can only be prescribed on NHS, if NHS endocrinologist says you have clinical need

New NHS England Liothyronine guidelines July 2019

Note that it says test should be in morning BEFORE taking Levothyroxine

Also to test vitamin D, folate, B12 and ferritin

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

Initial 3-6 month trial via NHS endocrinologist/hospital pharmacy.

Once trial is considered successful, endocrinologist writes to GP to request ongoing care is taken over.

At this point many patients find GP and/or CCG area may refuse individual funding request

[LindaC]

Hi Katherine - I too was recommended Cynomel and its source from Dr P in May 2010 - didn't begin using fully until 2012. There have been some 'scares' when unavailable, with people rushing around like... it can get scary. It seems that this company has been 'hounded' too and has changed names. I'll PM you. Best wishes and Seasons Greetings. xox

[katherine107 in reply to LindaC]

Ok thankyou