endo appointment at last

[Essexlil]

hi, after waiting for 10 months I’ve finally got an appointment at Broomfield Hospital, Chelmsford. I’m actually on T4/T3 and my purpose for this appointment is to try to get my T3 on the NHS. Has anyone got any experience of this with the endocrinology team at Broomfield or am I wasting my time? I’ve been on T3 since May 2024 prescribed by a private endo.

[pennyannie]

Hello Essexlil:

just go into openprescribing.net and you have a window into your surgery and ICB area - compared to other surgeries and ICB areas - just enter Liothyronine as the drug :

but we have no way of knowing how new patients to T3 on the NHS are ' seen or treated '

[Essexlil in reply to pennyannie]

Ok I’ll have a look thankyou for your help!

[McPammy]

I managed to get my T3 off the NHS after proving on a 6 month trial of privately prescribed T3 that I was greatly improved. My blood test results are so much better also and importantly for the NHS Endocrinologist my TSH is not suppressed on T3 combined with T4. They will be wary prescribing if your TSH is suppressed on T3.

[Alternatively in reply to McPammy]

Hi McPammy, I thought the TSH is always suppressed when taking T3? Wondered if you know how yours is staying within range? Is there a way of preventing suppression ?

[McPammy in reply to Alternatively]

Yes, lots of people on here saying TSH always suppressed while taking T3. For me that’s not the case though. My TSH is usually around 1.00 ish (0.35-5.50). It can go slightly lower or higher. I take 68mcg levothyroxine liquid split into two doses 34+34mcg. I also take 10mcg t3 a day split 5+5mcg leaving 8hrs between. I think my success is due to checking my T3 bloods after taking my first dose of the day. So I always know I’m not going over. The result is usually around 5.5 (3.7-6.0). So I’m pretty high after the morning 5mcg. My T4 is usually just under midway in the range but I leave 16hrs normally since my last dose of levo. I don’t change my med routine times before a blood test. There has been occasions right at the beginning of starting T3 when my TSH was suppressed. I didn’t alter the T3 doses to bring up the TSH what I did was slightly lower my levo dose from 75 a day to 68 a day. With liquid this is so easy to do. On occasions now if I feel I might be going over medicated I never alter the t3 but I will drop one dose of levothyroxine, next day I feel better again. I know instantly if I’m going over. I get hungry, wired or can’t sleep well if it’s building up. Some times I might have to drop a full day dose of levo. I find I need to be active to use up the T3 energy. But if I’m not well like right now with covid I can’t go out doing my usual brisk walking. I’ll only drop a levo dose if I start to feel wired or unusually hungry. So summing up why my TSH is not suppressed I believe it’s down to managing it and being in tune with my body. I prefer to alter levo if required I’ve never altered the t3 as I know it’s never too high. I get my bloods done every 12 weeks by my gp also since I started t3. He also checks all my vitamins, cortisol, FBC, HBA1C, lipids and electrolytes too. I’m very lucky I have a gp and a private endocrinologist that really does look after their patients by using prevention measures rather than waiting until you’re sick wherever possible. I’m very focused on my health since it all went very wrong 6 years ago now and do all I can to stay active and eat healthy foods mainly. I’ve never felt so energised and tell people I’m getting younger every day. T3 has been a miracle for myself. I have Hashimotos and the faulty DIO2 gene causing poor conversion from T4 to T3. I was finally diagnosed with Hashimoto’s in 2008 after years of struggling. I was prescribed levothyroxine but should have always been on T3 also. 11 years later I got the T3 which has changed my life as long as I keep my levels in range and therefore TSH also I’m symptom free

[TaraJR]

Take all your results/doses/symptoms with you, from before you started T3 to now you're (I assume) well on T3.

Here's the Essex formulary, and it looks like you can get T3, but only from a hospital. There isn't a link to their 2020 T3 statement.

midandsouthessexformulary.n...

All national guidance says you can have T3 if you're still symptomatic on T4. And prescribing can transfer to a GP.

Take the August 2023 NHSE "Liothyronine - advice for prescribers" with you. This is the one to quote. Don't let them quote the other guidance from August 2023 as that has mistakes in it that the patient groups are trying to get rectified.

england.nhs.uk/long-read/li...

[serenfach]

Have they arranged for you to have a blood test before the appointment, or has your GP done one within the last few months?

If not, they will probably say go away and have your blood tested and then come back, as if the Endo does not have up to date test results, how can he judge? (Dont answer that!!!). They also may not take private test results, so before the appointment, it may be worth asking your GP to do the test.