Support please after my latest NHS endo letter suggests BTA do not endorse T3/4 combo treatment and therefore they will not offer it.

[NWA6]

I am due to see my NHS Endo on Thursday. I’ve had Hashi’s for 10yrs. Always on Levo, very unstable and increasing Levo year after year either to tackle symptoms or because of high TSH. Last year things went sideways and eventually in Nov my exasperated GP referred me to endocrinology. In the meantime I began to gain more knowledge and had a DIO2 test. Finally got an appointment in Feb. Endo bloods were all in range and he said I was on optimal treatment follow up in 3mths. He tried to send me to a geneticist but the declined to see me.

Since that first Feb consult I have seen a private Endo who was more than happy to prescribe T3 as he said my history of full blood tests since 2014 + symptoms all indicate that I’m a poor converter (whatever the reason, he wasn’t particularly interested in the DIO2 test)

I am happier than I’ve ever been in my life on T3/4 combo, it’s only been 4wks so I’m not due blood tests yet.

I could continue with this private endo but what if he retires/falls ill? I feel morally obligated to challenge my NHS endo for the sake of public health and my children’s health and for all those others who cannot afford private health care.

So where do I go with this? What info can I give to my Endo when even the British Thyroid Association is against this treatment and that’s what they’re basing they’re clinical judgement on?

[SlowDragon Ambassador]

That's B*****t

Here's BTA statement

british-thyroid-association...

Suggest you print it out and take it to appointment.....if you decide to go

Or perhaps delay this NHS appointment and wait for few weeks/months for T3 trial to show good blood results

Strongly recommend wearing a Fitbit and printing out weekly activity record too

Discuss how you proceed with NHS options at next private consultation.

[NWA6 in reply to SlowDragon]

Thanks for that SlowDragon. It’s complete and utter BS. I will print and take with. Just printing of other stuff too to try and back myself up.

I have worn an Apple Watch most days over the past couple of years. Before adding T3 my resting heart rate was recorded as low as 36bpm with an average somewhere in the 40’s. That’s incredible low for someone who isn’t an elite athlete! Now my resting heart rate is around 64bpm. Which is still lowish for someone not exercising but acceptable. What’s much more interesting is my HRV which was recorded at 15ms which correlated to poor heart health and now it’s up to 25ms which is much more healthy.

I will go on Thursday because I want them to visually see how physically well I am and talk to them about how well I am. I can’t just ignore a fight because I’m well. Things have got to change and I want to say I played my part. Although I’m fecking raging 🤬 I’ve got to cool my Irish temper and try and be rational #deepbreaths #meditationneeded😬

[SlowDragon Ambassador in reply to NWA6]

Go girl!!!

Can I be a fly on the wall!

[SlowDragon Ambassador in reply to NWA6]

My GP didn't bat an eyelid at suppressed TSH

A) because I look so well

B) I get full private testing showing FT3 and FT4 within range

C) Fitbit shows resting heart beat still very low (too low?) at 54-57

D) Fitbit showed regular exercise

[Hidden in reply to SlowDragon]

Told EP the other day my resting heart rate was 40-50. He wasn’t bothered. Hardly an elite athlete at 76! Di

[NWA6 in reply to SlowDragon]

These watches are only good for an approximation, they’re not accurate enough for clinical purposes but they do give good enough accuracy when changes meds/diet/exercise. ESP if you keep using the same device throughout the changes. It’s accurate enough for us mere mortals 😉

[SlowDragon Ambassador in reply to NWA6]

Interesting research papers

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

sciencedaily.com/releases/2...

heart.bmj.com/content/84/4/455

See paragraph

Over replacement with thyroxine

Osteoporosis

ncbi.nlm.nih.gov/pubmed/825...

endocrine-abstracts.org/ea/...

Some patients use liothyronine as thyroid replacement therapy as an alternative to L-thyroxine. Trials have examined the potential benefits, but there is little data looking at the relative safety of these two agents. All patients receiving thyroid replacement therapy between 1993 and 2014 in Tayside were included in a cohort study (n=34 355; 319 500 patient years of follow up). Overall 33 955 patients received only L-thyroxine, and 327 received liothyronine in combination with L-thyroxine and 73 on liothyronine alone (total=400). Using unique patient identification numbers, biochemical, prescribing, hospital admission, radioiodine and general registry office data were linked.

Patients initiating treatment with liothyronine were younger (48 vs 59 years P<0.001), but there was no gender difference (85% female vs 82%). They were more likely at baseline to have had thyroid cancer, have a history of previous hyperthyroidism and be treated with anti-psychotic or anti-depressant medication. They were less likely to have cardiovascular disease or be treated with a statin. During a mean follow up of 9.3 years (±5.6 years) proportional hazards ratios (HR) were reported after adjustment for age, gender, baseline TSH, number of thyroid prescriptions and history of thyroid cancer or hyperthyroidism.

For patients taking liothyronine there was no increased risk of death (0.78; 95% confidence interval: 0.54–1.11), fractures (HR 0.79; 0.49–1.27), atrial fibrillation (HR 0.91; 0.47–1.75) or cardiovascular disease (HR 0.90; 0.42–1.92). There was an increased risk of mental health disorders (HR 3.27; 1.02–10.52) for patients taking liothyronine alone, but not for those taking a combination therapy. There was an increased incident use of anti-psychotic medication (HR 2.26; 1.64–3.11).

No increased risk of fractures or atrial fibrillation in patients taking liothyronine compared to L-thyroxine was demonstrated.

[SlowDragon Ambassador in reply to NWA6]

Also this one

karger.com/Article/FullText...

In this study on 23 patients switching from L-T4 to L-T4/L-T3 combination therapy, we observed a substantially improved QoL as measured by ThyPRO-39 after 3 months, which remained present at the 12-month follow-up.

[NWA6]

All ready for tomorrow! Got a stack of papers to hand over! (And I know all you battle harden peeps will say it’s a waste of time but I’m TENACIOUS! 🤗)

Doh! I mean Thursday! But at least I’m ahead of myself already! Honestly I’ve been fine and carefree and now my heart rate is up and adrenaline is flowing! I don’t think reading through all my research did me any favours! 😂 Just made me go into fight mode 😂

[Hidden]

Hi have you looked on Thyroid Uk and the Thyroid Trust and ITT webpages and Facebook pages? There is a lot of info on these about access to T3. The BTA have been supportive in the access of patients to T3 and as linked do recognise it is needed by some patients.

[NWA6 in reply to Hidden]

Thank you Crysalice! I’ve been printing off and high lighting papers all day 🤗

[TaraJR]

The BTA do DEFINITELY say that a minority of patients benefit from T3, and if you are well on it you shouldn't be taken off it. That's in the BTA 2016 statements, which you have now.

You could also throw in the fact that the BTA are currently working with 7 other patient groups, and we all collaborated to produce a dossier for the Lords and NHSE, published in October. It evidenced the harm being done to patients, by CCGs 'banning' T3 and not following NHSE guidelines. Lord Hunt described it as a 'significant piece of work'.

NHSE are now working with us all for much clearer guidelines to be produced.

The dossier is here ​bit.ly/LiothyronineDossier2018

[NWA6 in reply to TaraJR]

british-thyroid-association...

I am really mad that this is being used by my endocrinologist to get out of prescribing me T3! BTA need to sort it out! Until this is sorted/updated then the endos have the upper hand.

Mine hasn’t mentioned costs.

[NWA6 in reply to TaraJR]

Where are my manners! 🙊 Thank you for your reply 🤗

[TaraJR]

Thanks! Surely that document isn't being thrown back at you? It's from 2007 ! The BTA statements from 2016, and their response to the 2017 NHSE Consultation supersede one from 2007!

[NWA6 in reply to TaraJR]

Yep! Written bold as brass on my letter I’ve received Before thursdays appointment! Can you believe the cheek of it! Anyway I have the updated print of from BTA but until they cull that study from their literature or do another than can refute the claims then the endos are going to keep referring to it 🤬

[TaraJR in reply to NWA6]

Mmm.. suggestions for us to take back to the BTA . I'll see what I can do and report back. At least you have the most up to date info now. Thursday should be fun, and I really hope you're up for it.