1st Endo appt Worthing NHS. Self-prescribing T3 for 3yrs with success. What pro-T3 literature can I bring to persuade Dr to prescribe me T3?

[ChronicTonic]

Morning All,

Been on T4 levothyroxine for around 20 years and finally have my first ever appointment with an Endocrinologist at Worthing hospital (West Sussex) on Tuesday.

For the past 3 years or so I have been successfully self-prescribing T3 with the help of you lovely lot - for which I am truly thankful. However, for obvious reasons I would prefer to be officially prescribed T3 on the NHS.

Apart from recent blood test results (which I will post when they’re through!) what, if anything, can I bring to the appointment to help state my case for receiving T3 on the NHS?

I know any reasonable doctor would look at the evidence of 3 years successful T3 self-medication - me! - and be supportive. But I also know that in terms of treating the thyroid there are lots of unreasonable endocrinologists out there.

So, is there any pro-T3 literature out there for doctors which I could present them with tomorrow?

FWIW My brother doesn’t have thyroid issues but he *does* have the Dio2 gene. Hopefully this will be relevant to me??!

Having waited around 20 years to see an endocrinologist and an additional many months on the Worthing waiting list, I feel like this is my one chance to access the help I need. So I‘ve got to be fully prepared to go for it!

Not only would I like to be prescribed T3 on the NHS, but I’d like to have my T4 levothyroxine dose increased slightly.

And finally, I’d like to be prescribed an increased dose of both in the week running up to my period, when my thyroid symptoms are at their worst: I’m in so much pain I’m often housebound at this time (I also have fibromyalgia which is aggravated when my thyroid isn’t properly medicated), and I can barely string a sentence together until I start bleeding.

Yes, I am aware that the words ‘moon’ and ‘stick’ come to mind!

So, how do I put together a case - with medical studies or Thyroid UK documents for example - to help persuade the endocrinologist tomorrow? What online resources can I use as supporting evidence? And is there anywhere this is all grouped together in preparation for those of us visiting an endocrinologist?

Thank you so much in advance for your help,

Abi.

PS: I’ll be back asking for help in deciphering my blood test results (the whole gamut incl FT3 and vitamin and minerals levels) which I’m due to receive on Tuesday.

Going to be a tight turnaround, but the endocrinologist appointment was brought forward unexpectedly - and neither myself nor my GP were prepared for it!

x With thanks again x

[ChronicTonic]

For anyone else looking to amass pro-T3 evidence for an endocrinologist, so far I have found the following on this forum.

I will continue to search any other relevant posts and paste useful responses below -

“Recent discoveries reviewed by Antonio C. Bianco, M.D., Ph.D at the American Thyroid meeting, reveal how genetic differences influence the effectiveness of thyroid hormone replacement. Dr. Bianco’s lecture focused on studies pinpointing inborn differences in the way people metabolise thyroid hormone to explain why T3 treatment of hypothyroidism is probably required by some to restore normal functioning of their brain, muscle and heart.”

Gary Pepper, M.D., Editor-in-Chief, Metabolism.com.

During the 2007 FTP, Prof. A. Weetman (President of the British Thyroid Association at that time) was asked, “What do you know about Armour thyroid? Have you ever prescribed it?” to which Professor Weetman replied, “Yes.”

Weetman A. FTP hearing, GMC: 6th July, 2007 (P10)

“Gautam Das et al described three patients who were successfully treated with Armour thyroid after being intolerant to L-thyroxine and commented, “Although L-thyroxine remains the treatment of choice in the majority, a trial of Armour could be considered in patients who have not responded to this conventional treatment…..”

(Gautam Das, Shweta Anand, Parijat De. Does synthetic thyroid extract work for everybody? (Endocrine Abstracts (2007) 13 P316)

“To assess changes in symptoms of hypothyroidism in patients treated with Armour.”

72% found improvement in energy levels, 52% dry skin, 52% hair loss and 55% cold intolerance…. Most patients (62%) had improvements in 3 or more symptoms of hypothyroidism.”

Conclusion:” In appropriately selected hypothyroid patients, Armour appears to improve the quality of life in patients who have either had an inadequate clinical response to conventional T4/T3 therapy or are unable to tolerate such therapy.”

Improvements in quality of life in hypothyroid patients taking Armour Thyroid.

DH Lewis, J Kumar, P Goulden and DJ Barnes.

Maidstone and Tunbridge Wells NHS Trust, Tunbridge Wells, Kent, UK.

[SlowDragon Administrator]

Levothyroxine mono therapy does not resolve all symptoms

ncbi.nlm.nih.gov/pubmed/299...

Improved quality of life and no increased risk

ncbi.nlm.nih.gov/pubmed/298...

Low FT3 associated with increased risk of vascular dementia or Alzheimer's

ncbi.nlm.nih.gov/pubmed/302...

Significance of DIO2 and need for T3

academic.oup.com/jcem/artic...

Low TSH

thyroidpatients.ca/rational...

Osteoporosis and low TSH

thyroid-info.com/articles/o...

thyroidpatients.ca/2018/07/...

Another member on here tested positive for Heterozygous DIO2 but her sister tested negative. So you may not be able to assume you are DIO2 positive

[ChronicTonic in reply to SlowDragon]

Thank you SlowDragon this is all great. Much appreciated.

Actually very nervous about tomorrow as my GP - who’s actually generally very supportive - gave me a bollocking a couple of years back when he found I was self-prescribing T3 (I wrote about this in a previous post) so not looking forward to potentially getting a similar dressing-down from an endocrinologist.

Also had an extremely disappointing appointment with a neurologist recently (not thyroid-related), which has again knocked my confidence in medics.

So I really appreciate you taking the time to post the links above. Thank you.

And yes, I’m aware my brother and I may not share the DCIO2 gene - he’s blue-eyed and blonde whereas I’m dark with brown eyes, so if externally we’re so different there’s every chance we are internally too (womb and ovaries, etc, aside. Ha)!

All the best,

Abi.

[SlowDragon Administrator in reply to ChronicTonic]

Suggest you have to hand, on paper or in your head....the list of eminent thyroid specialist endocrinologists who are now extremely pro T3

Professor Colin Dayan, Dr Peter Taylor, Professor Wass etc etc

thelancet.com/journals/land...

Article by Colin Dayan

thyroidresearchjournal.biom...

See righthand column, page one, line 8

british-thyroid-association...

[ChronicTonic in reply to SlowDragon]

This is fantastic! Thank you.

[samaja]

Paul Robinson has a lot of reference material on his Recovering with T3 website and FB page. He is probably the best authority on T3 research in the UK and wrote 2 books about T3 but as he is not a doctor the medical profession is very sniffy about him.

[ChronicTonic in reply to samaja]

That's still useful info! Thank you samaja - I'll have a read just for myself, if nothing else. Thank you.