As predicted! No T3 from NHS Endo

[NWA6]

Saw my NHS endo, consultant rather than the registrar this time. I told her how fabulous I felt. That I’m like a new person since starting T3, prescribed by a private Endocrinologist. She then explained that she will never prescribe it as there isn’t enough evidence to support its use and all studies to date have indicated that it can cause harm. I said that she had the proof sitting in front of her. She said one person doesn’t make proof and that they don’t know what the long term affects were. She wouldn’t routinely prescribe steroids but they make people feel well. I said that’s hardly the best comparison. She said they’re both hormones so she thought it was a great comparison 😩 But that at this juncture we’d have to agree to disagree because she will not prescribe T3. I said, well that works out well for you but not for me as you hold all the power.

She sighed a lot and then said that my GP can prescribe it anyway. I said she was passing the buck and that I’d probably end up having this same argument with my GP and so again I miss out.

She mentioned the press yesterday and I said I don’t know why you bring that up at my appointment it was a study on subclinical patients and my thyroid conditioned is established but that to be honest there’s some merit in it because Levothyroxine didn’t make me well as was claimed but combination therapy is working marvellously.

So she’s palmed me off to the GP. I did ‘request’ that she make it clear to the GP that they can prescribe T3 and she said she would but I bet my surgery will just blow me off aswell.

She said she would be very interested to follow my progress and was very keen to see what my bloods revealed and she said you will get TSH T3/4 done don’t you? It’ll be interesting to see what those numbers are like. Ofcourse i replied I’ve been having all 3 done since 2014. Oh I see, that’s unusual, she says. Not if you know what you’re doing I said 😂

I’m happy to see my private endo again but what happens when he retires? I’ve got a long life to live and I don’t want to be nervous about where my next stash is coming from!

MaisieGray I took my paperwork for the blood test and I’ll return in the morning to get them done! With her none the wiser! Great advice 🤗

[JMo1]

I am horrified to hear that Paula6 and so sorry it leaves you in the private system. How can an endo be so uninformed?? My daughter is going to her NHS endo appt on Monday and I am dreading a similar response as it will cause a real backward step for us. Our GP does actually prescribe the T3 (following a successful complaint to NHS Lanarkshire) however it is on the agreement that we pay to monitor privately. The guidelines actually state that it needs to be monitored by an endocrinologist. If unsuccessful I will definitely look at starting another complaint but from experience know it takes such a long time. It is unbelievable that the NHS ignores the positive outcomes for people on T3. Holyshedballs has some great posts on patients rights. Have you seen them? Good luck with GP.

[NWA6 in reply to JMo1]

Thanks JMo1 🤗 I’m pretty relaxed atm because I have my T3 so I have time to go back to GP, get their answer and as it’ll probably be a no then I’ll move forward with complaints and action. I’m determined to get this on NHS but I may be in for a fight and/or disappointment 😬

I’m glad at least your first complaint worked and yes HolyShedballs has sent me some stuff but I’ll look into it some more 🤗

[2pence in reply to NWA6]

I saw an NHS Endo last month who has written to my GP asking them to prescribe T3 for me. I have been self treating for nearly three years and she is happy that I am benefitting from it. She spent a long time going through my medical history with me and looked carefully at my spreadsheet of results. My GP has written back saying that it is amber rated, therefore Endo should prescribe until I am stable and they will take over then. Having been on same dose since August 17 with my spreadsheet of results the Endo is happy that I am stable.

I have Tiromel so it will be interesting to see what happens. My surgery is the only one in town which has not prescribed T3 according to opensprescibing apart from a newly opened one.

[NWA6 in reply to 2pence]

Yes that’s what I’m assuming will happen. Trying to pass the buck back and forth. The Endo said she’d only prescribe 2wks worth anyway before passing it on to the GP because that’s the hospital policy. We’ll see. But your situation sounds promising?

I should look at open prescribing again I only glanced at it a few months ago.

[2pence in reply to NWA6]

The Thyriod Trust have a letter to a patient from a doctor who I think is a GP but also on a BMA committee stating clearly that it only needs to be a recommendation from an Endo, not first prescribing, for a GP to prescribe. The letter is anonymised so don’t think my GP will accept a copy. I’m on my IPad so can’t copy it here at the moment.

[JMo1 in reply to 2pence]

That’s really interesting. I’ve never heard of that system. Is it written anywhere as policy? Can I ask which area you live in?

[2pence in reply to JMo1]

Look at The Thyroid Trust's website under information, news T3 liothyronine debate and then a GP writes. This will take you to the letter.

[JMo1 in reply to 2pence]

Brilliant! This is perfect timing for me. Thank you!

[Hay2016 in reply to NWA6]

I’m in same position. My endo just sent me a letter saying b12/ folate in range but lowish so I should maybe supplement I think my letter in reply will say I’d like to supplement t3 too as it’s low in range can she facilitate this.

Keep up the fight!!!

[NWA6 in reply to Hay2016]

Lol! ✊🏻

[SilverAvocado]

Wow, Paula6, sounds like you handled yourself brilliantly and really gave her something to think about!

[NWA6 in reply to SilverAvocado]

You think so? I hope so 🤗

[SilverAvocado in reply to NWA6]

Yes, I definitely think so! It was a joy to read how well you stood up for self, and I wish I as a fly on the wall to watch it in person

[NWA6 in reply to SilverAvocado]

Well that’s a lovely thing to say. Thank you 🤗

[nightingale-56]

Hi NWA6 I have been treating myself with WP thyroid and think I have found my sweet spot in 3 months. My Blood Glucose, BP and other important bloods are all pretty good as well. My NHS Endo is aware of what I have been taking as I told him early on and showed him private blood results. He has said he is happy to go on monitoring me, but I think it is just interest to see how it is affecting me as he will not write a private prescription (not that I want one, as it would cost me more). After taking my son to him yesterday and being ignored in favour of my son's carer, I don't think I will be taking him up on this offer. He can go on wondering how this self-treatment is working out.

Glad T3 is working for you, but it is a worry to know whether our sources will still be available at any one time.

[Agapanthus1]

Me neither. Newcastle Hospitals won’t prescribe T3. I wrote to the lead endo requesting a trial and he said numerous RCTs show no evidence of a benefit from T3, it is a placebo & also unsafe! (How can a placebo be unsafe???!!!) Oh yes and it is expensive! He did say that NICE were reviewing the evidence currently and would be producing guidance in Nov 19, so we shall see although I am not hopeful.

[NWA6 in reply to Agapanthus1]

A placebo 😂😂 Jaysus they’ll say anything. My placebo is working perfectly 😉😂