Happy sad☺😭: Well just been do for my 8 weeks... - Thyroid UK

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Happy sad☺😭

Razzar1977 profile image
31 Replies

Well just been do for my 8 weeks blood for the liothyronine consultant. Apparently the doctor have no reassure me they can not prescribe T3 legally in Wales . The endocrinologist are the only ones to do do. My nurse read my last blood results which tsh(92) as for other have to get print out from endo. The nuse said she has not seen a hypo thyroid of the ricter scale in any of her patients. Anyways doc s are still refusing to prescribe my Liothyronine she said that the nhs here are not allowed to by law prescribe by law T3 legally. It has to be written by a endo. ...that's if u Live in Wales don't know what the situation is over in England. Makes me made and has mead it more complicated for me to script. Anyways on up side managed to get 11lbs in 2 months shifted in just a month not wanting to promote these as weight drug as it's not. Just think it's saved my life shame they making it so unavailable to almost everyone xxx

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Razzar1977 profile image
Razzar1977
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31 Replies

Hello Razzar,

I am sorry this has happened to you. All the different rules and regulations ... and then all the ones they suddenly make up..!!! .. It is all so confusing.

I was all happy this morning too as hospital pharmacy 65 miles away agreed to send my T3 by post..... then later the Endo's National Health secretary rings to say I need a national health appointment with that hospital before a script can even be issued..! ! !

Why am I told one thing only for someone else to say another..?.?..

They DRIVE US to self medicate..! !

What are you going to do Razzar..? ?

Flower

Natj123 profile image
Natj123 in reply to

That's not funny flower 😢

Razzar1977 profile image
Razzar1977 in reply to

I'm not sure flower I will keep my nhs endo appointment in a couple of weeks. The docs had been contact with my specialist saying she was not by law to prescribe it. The endocrinologist had no idea it was only him who could prescribe it . Apparently no one no in Primary Health Care meaning any doctor apart from consultants can prescribe. I asked for my blood print out and she said sorry you will have to ask your consultant for that . It's a joke flower. So anyways the endo did prescribe me another 100 tabs before I see him so I don't run out. Nurse did say he probably give me a batch worth of scripts to take to chemist. Basically predate them. He said he would prescribe me but didn't realise all the stress. Hope you can get it sorted soon flower. If it becomes to much of Prob my Bro lives in Turkey might get home to send some xxx I can't believe the way they treated you it's maddening xx

in reply to Razzar1977

I can't believe they way they treated you either Razzar.

I don't understand why your GP can't prescribe unless he just doesn't want to.

My GP CAN & WOULD prescribe because my endo has asked him to but my local councils Clinical Commisioning Group have blacklisted T3 so only "special" cases can get it in Brighton & Hove now.

Some days I think I will appeal ...... Others, I think I can't be bothered as feel so unwell.

However I have an emergency pack of Tiromel .... should the need arrive.

Great you have such a wonderful endo ... I am very pleased for you as the worst thing you could do is to start T3, feel so great & then be forced to stop.

Good luck with your endo appointment

Flower

Razzar1977 profile image
Razzar1977 in reply to

Ty babe it's frustrating. My endo had no idea he couldn't even prescribe without it being an issue my doc end. It's more of a pain . The nurse said when i go next he should write a batch of scripts x

in reply to Razzar1977

He sounds nice... You should be fine.

F

galathea profile image
galathea

Wales is still part of britain and shares the same laws and nhs, as far as i know they havent voted for independence.

If its listed in the british national formulary, then the only reason irs not being prescribed is cost. Time to contact the local mp. Here's a link to the bnf. It wont let me. Access it as i am not in the uk atm, but you should be able to see it ok. evidence.nhs.uk/formulary/b...

X g

Razzar1977 profile image
Razzar1977 in reply to galathea

I think ur right it's the cost the doctor did say yesterday that primary health care can not prescribe T3 anymore she said she has to get order my t3 straight from the endocrinologist it's self. Saying that from what I have seen some endos are not wanting to prescribe it unless they really need too x

Natj123 profile image
Natj123

Hi!!! I'm in Wales too!!!

You get your t3 prescribed by endo?

How much do you take

X

Razzar1977 profile image
Razzar1977 in reply to Natj123

Hey endo up at Newport started me on a starter dose of 5mgd T3 for 2 weeks every 8 hours then bloods then pushed me upto 10mcgs 3x day every 8 hours . So that's 30 mcg now x

Natj123 profile image
Natj123 in reply to Razzar1977

Rhondda I am!!!

I didn't even get my ft3 result because the lab said it was 'OK'!!! Started self medicating with it cos I was so desperate to feel better 25 mcg now and it's helping a tiny bit, stopping me falling asleep during the day!!!

Reluctant to raise it to be honest!! And gained half a stone!!!!

Glad you got lucky tho 😀 xx

Divided profile image
Divided

I'm in Cardiff North. The way I feel today, perhaps I should move to Newport. Not currently under any hospital as my doctor thinks he can handle it. We disagree.

Razzar1977 profile image
Razzar1977 in reply to Divided

Hun demand to see a endo I had to even with a tsh of 92 which the nurse said highest she seen but the doc didn't even think it was that bad. I'm no scientist but knew something was drastically wrong. He also works in neville hall sometimes. He took 1 look and said he doesn't even know how I managed to get into appointment. Endos will prescribe they will have to do a bunch of scripts x

Natj123 profile image
Natj123 in reply to Divided

Ah maybe you could ring the endo Sec to see if you could get a private appointment??? Worth a try??

Natj123 profile image
Natj123 in reply to Divided

Rhondda I am x

galathea profile image
galathea

Ah! I didnt realise, that the nhs in wales has been cutting budgets fir some time.... Seems everything is overspent..... So its likely that your lack of t3 is down to lack of funds..... Added to this the huge price of it because the one supplier got very greedy.... You might be best to just find your own online...... :-(.

bbc.com/news/uk-wales-polit...

G x

in reply to galathea

If Wales are getting an extra £25m .....surely there will be enough for Razzars little bit of T3..! ! !

F

Razzar1977 profile image
Razzar1977 in reply to

You would think so flower. I heard that we'll saw some where body builders abuse this hormone for is weight loss properties. I thought it would only work on people like us with hypo xx people need this hormone to live and people are abusing to lose weight for body building. Don't understand xx

greygoose profile image
greygoose in reply to Razzar1977

Yes, they are using it to do whatever body builders do, but they're not getting it on the NHS, they're buying it on body building sites where they pay a fortune for a dubious product. There's no conflict of interest there. Nothing to understand.

Angel_of_the_North profile image
Angel_of_the_North in reply to greygoose

They probably buy it the same places we do (and sell it on illegally).

greygoose profile image
greygoose in reply to Angel_of_the_North

Possibly. But I wouldn't want to take the risk! lol

Razzar1977 profile image
Razzar1977

Have though about it x

serenfach profile image
serenfach

I am in West Wales and my GP prescribes T3. Contact the practice manager and your GP. They have a duty of care, believe it or not.

Razzar1977 profile image
Razzar1977 in reply to serenfach

They still won't do it. The doc has to ring my endocrinologist to get him to prescribe it. Maybe different practises have different rules who knows. I'm only going of what I was told yesterday at my surgery. !!!

alangardner profile image
alangardner

hi there razzar , although we live in England , I broached this with our g.p. [ who is superb - but was at that time a thyroid novice ,but certainly not since ] some time ago , when my lady was first diagnosed , and as I had arrainged directly with the hospital endo to communicate directly with him and vice versa , he would be more than happy to prescribe any meds inc t3, ndt or whatever as he ' has a duty of care for all his patients no matter what ' ..... and he has the ultimate responsibility for the patients medical wellbeing irrespective of cost , which can lead to other issues that then put a strain on his resourses in other areas ...... we are so glad that we have him .........alan x

Razzar1977 profile image
Razzar1977 in reply to alangardner

Thanks Alan hopefully now she has spoke to him and he has now issued another script for my T3 hopefully she carries it on . It's just a bit of a drama to through each time. I should be seeing him for my first follow up in 2 weeks. I lost 10 pounds in 2 weeks not sure wether that's normal not that I'm complaining just don't fancy putting it all back on again. I think it might be just fluid tho xx

alangardner profile image
alangardner

try not to stress too much about the weight --- up-sides & down - sides gains and loses are par for the course of this damn disease .... that's one of the reasons why it needs to be tackled correctly , but there is no quick fix -- its taken us 3.5 yrs to get where we are now , and in that time my lady has gone from about 7.5 stone to 16 stone and everywhere inbetween [ currently about 13 stone ] , but there isn't a massive amount that either of us could apart from accept the situation ......WE WILL GET THERE EVENTUALLY ...... with the help , advise , information and empathy from this site for which we will be forever grateful ....... alan xx

Razzar1977 profile image
Razzar1977 in reply to alangardner

Ty well its a comfort to know there is a light somewhere . I know unfortunately there's no quick fix. I'm glad she's feeling better. Guess it's trial and error with these hormones. Be nice just to wake up 1 morning feel ok even if it's for 1 day tc xxx

alangardner profile image
alangardner in reply to Razzar1977

well she's always got me to wind her up a little bit ...... in jest of course .... it makes the day go by nicely for us all ........ our humour does keep the peckers up [ including my in-laws --- m.i.l. is sometimes worse than me ]........ YOU WILL GET THERE GIRL !!!!!!! ...... alan xx

Razzar1977 profile image
Razzar1977 in reply to alangardner

Ty Alan xx

penny profile image
penny

I was prescribed T3 by my GP when I was on 120mcg per day. The endo. I saw would only prescribe 60mcg per day, max. As it happens the GP stopped my prescription as I was not hypothyroid at all, not having been diagnosed by the nhs but by a private test. The endo. agreed that I had not been diagnosed and would never be diagnosed hypo.) (Thought...not hypo. but on 120mcg T3...umm...dead! So stupid.) My thought was that it was costing too much money and they could use this as an excuse. I buy mine privately for a fraction of the price it costs the nhs.)

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