Latest letter from NHS Endo

[NWA6]

Just received a follow up letter from my NHS Endo. I have started T3 with a private endo and I’m doing amazingly well 🤗

I’m have been on Levo only for 10yrs and have never felt fully well. Combo treatment is the right treatment for me. But I do not like the uncertainty of that treatment not being available through NHS. I’m lucky that I can afford it but many can’t and who knows what’s round the corner, I’d hate to be in a situation which meant I couldn’t afford it.

We had a heated discussion about her views on T3. My latest blood tests show that I am not over medicated and could actually have a slight increase in T3 and still be in range.

Next step is discuss with my GP about them prescribing T3 as suggested by NHS endo. Just taking each stage one at a time.

[Angel_of_the_North]

I'm pretty sure that letter implies no NHS prescription as she doesn't recommend it and she's the NHS endo. Looks as though she is a diabetes specialist anyway. Are you going to bother going back in 3 months?

[NWA6 in reply to Angel_of_the_North]

That’s corrrect. She doesn’t want to prescribe it but says technically my GP can. Aren’t most of them diabetic specialist? That’s why we have to educate and keep going back. Rome wasn’t built in a day 😂

[Hay2016 in reply to NWA6]

Hmmm my understanding is that only endo can initiate t3 prescription according to the BTA guideline. Has the endo misinterpreted it or have I got wrong end of stick. She says the can’t legitimately prescribe it on basis of do no harm.

[NWA6 in reply to Hay2016]

I have a private Endo who says I don’t convert well enough and he’s happy to prescribe. That should be enough for my GP to prescribe. But I’m under no illusions that it’ll be that easy. I’ll doubt my GP will just say yes. I’ll have to go through a complaints procedure to eventually get it on the NHS.

As long as I stay in range which is looking easy as I’ve only raised my T3 to 4.8 from 3.1 in the last 7wks (3.5-6.5). I’ll probably try to add another 5mcg and kick it up a smidgen.

[TaraJR]

So your endo is ignoring the NHSE Consultation recommendations:

england.nhs.uk/wp-content/u...

AND RMOC guidelines:

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

(another version of this is being issued shortly, giving better clarification)

AND the BTA 2016 statements to Endocrinologists, GPs and patients:

british-thyroid-association...

AND the BTA response to the 2017 NHSE consultation:

british-thyroidassociation....

AND the dossier requested by Lord Hunt and NHSE compiled by combined thyroid patient groups with the BTA, evidencing harm done to patients when they did not have the T3 they need:

​bit.ly/LiothyronineDossier2018

We seem to know more about this than she does.

[NWA6 in reply to TaraJR]

Thank you for your fab response 🤗 Short answer to your opening statement is YES! Lol She is going to ignore everything ‘because there isn’t enough evidence to suggest that Liothyronine works and there have been many studies to show that it does more harm. Steriods make people feel better but she wouldn’t prescribe them long term’ end quote 😩

The struggle is real. I asked her for the links to the studies she’s read but all she quoted was the ‘Daily Mail’ article on subclinical patients 😩 I wish I was joking but I’m not 😬

[TaraJR in reply to NWA6]

You're welcome.

Maybe quote back the Daily Mail from yesterday - a really good in-depth article

dailymail.co.uk/health/arti...

She cannot say the BTA don't recommend T3. They do - for a minority of patients who remain symptomatic on T4.

You've proved you need it. SO did I, though I still can't get it either. Whereabouts are in you in UK?

[NWA6 in reply to TaraJR]

I’m in Surrey. Where are you? I’ll have to keep knocking on the door and hope that I don’t ever loose the ability to obtain T3 privately because I absolutely cannot go back, not now that I know how good combo treatment is for me. I’ve read a lot of different stories on here about adjusting to introducing T3 but I’ve had zero difficulties and am going to try another 5mcg because I have a couple of minor remaining symtoms. I’ve taken to T3 like a duck to water. I can’t remember ever feeling this clear headed 🤗

What’s your story?

[TaraJR in reply to NWA6]

I'd hoped you were in Norfolk, and you could have joined our support group! I was fine on T4 for over 20 years, but then went downhill to a great extent for over 18 months. I couldn't even stand unsupported I was so weak, with loads of other symptoms. But after 4 weeks on T3, all my symptoms disappeared. You could also quote a very strong combined response to that first Daily Mail article, which quoted a BMJ article on sub-clinical hypothyroidism. It was issued today. Brilliant!

endocrinology.org/press/pre...

[NWA6 in reply to TaraJR]

I wish I lived in Norfolk too! Lol I haven’t met anyone round here and friends and family are bewildered and now slightly bored of my Thyriod chat 🤪 I have 2 friends who have Hashi’s but they too are confused because they are perfectly fine on Levo. Although I have ‘saved’ them both at times over the years when I’ve urged them to up their dose or pointed out that they’re under medicated. Both time they’ve successfully increased and their symptoms have gone away. They just can’t understand why it’s not the same for me.

I’ll save that other link and I will email the NHS endo with the few that I have and see if she reads them. She knew my private endo and didn’t seem very enamoured with him and the she said she knew the BTA president and knows his feelings on the subject. She just tried to be as strong as she could be and tried to put down any thoughts I had. But I ‘know’ I’ve got her interested. She is soooo intrigued to follow my story. My T3 has only just rise to 4.8 (3.5- 6.5) so I’m well within range for such a dangerous hormone and yet it’s made a huge difference for me.

Hopefully I’ll find a Surrey group in the future and I can unite with them and become an advocate 🤗

[TaraJR in reply to NWA6]

Your situation sounds really interesting now! Do keep us/ me informed! Are you in a thyroid Facebook group? Some of them are very knowledgeable and supportive. I hope I'm allowed to suggest them here. ... Admin, please say if not. There's ITT Improve Thyroid Treatment who are a strong campaign group. And their affiliated group Thyroid HUB UK. You may welcome support from like minded people on there.

[NWA6 in reply to TaraJR]

I’ll check out the ITT group. I did join a FB group but didn’t get a good vibe 😬 So I left. I think I was asking questions and someone was rude so I just left because anyone who is more knowledgable (probably 99% more than me 😂) then they should take a beat to just pass on that knowledge and not be dismissive. It can be a very intimidating subject and it’s very subjective as to how one responds to treatment. I used to be sooo angry, I’d argue with my GP ALL the time, she tried to label me with Fibro and CFS and I just refused those labels. But any knowledge I’ve gained has been through this forum. It’s been a gold mine of information and I am now just soo soo content with life. Now I’m medicated I feel like I can comfortably work with NHS to be their guinea pig without them taking the ‘risks’.

It looks like my daughter (17yrs) has the same conversion problem and I think that it may have come from my Dad, I got both my parents tested and my mums conversion is fine (Hashi’s) but my Dads is not great (no Hashi’s) and he may have been misdiagnosed with Alzheimer’s. So I’m busy helping my own family atm.

[TaraJR in reply to NWA6]

ITT is the campaign group, but many of those folk are also in Thyroid Hub UK, which is a friendly group of people who really understand how you feel! Thyroid UK and The Thyroid Trust are both excellent groups with websites as I expect you know, but sometimes it's good to talk to other people - hence I suggested those 2 FB groups.