A Small plea!

[knitwitty]

Hi all I have a telephone appointment with my GP tomorrow to discuss ongoing medication (Liothyronine) however I have just received a letter saying they will not under any circumstances prescribe it for me quoting the Pan Mersey guidelines.

These are ambiguous to say the least. It says "Existing stable patients in primary care may continue to be prescribed liothyronine by the GP where they are satisfied the patient is benefitting specifically from the use of liothyronine" however later on in the document it says "Primary care prescribing of these medications is NOT recommended. These treatments should be initiated by specialists only, ongoing prescribing is retained within secondary care." ( this is the quotation they are using to refuse prescribing it )

The consultant has written to the GP twice saying that I am benefitting from taking Liothyronine and has pointed out that I tested positive for the DIO2 gene which inhibits conversion of T4 to T3 but the are digging their heels in.

Is there anybody in the Merseyside area who is getting this medication prescribed by their GP?

Also if you are me what would you say to the GP, I don't think it is any coincidence that I have received this letter today ( the day before the appointment ) and after the surgery has closed for the day.

Thanks all in advance.

[SlowDragon Administrator]

GP can not stop prescribing T3 without FIRST referring back to your endocrinologist

As your endocrinologist has already said you have clinical need of T3 and were initially trialed via endo, it is correct that care and ongoing T3 is carried out by GP. with annual review back to endo

GP should not alter T3 prescription - should refer to endocrinologist

pulsetoday.co.uk/news/clini...

[knitwitty in reply to SlowDragon]

Hi SlowDragon, sorry I didn't mention I initiated the trial of T3 myself as the endo refused initially on the grounds of cost, the endo was encouraging me to get my own supply from the internet, when I saw him after taking it with great success for 5 months he then wrote to the GP, I did query the fact that I had initiated it and he said that did not matter.

I keep getting passed back and forth, the GP suggested I make a complaint to PALS at the Hospital because they wouldn't prescribe and the hospital wrote again to the GP saying that I need it. I have also taken it to my MP who asked PALS to respond to me as they ignored the complaint.

I feel like I'm in a washing machine being swished this way and that!

[SeasideSusie Remembering]

knitwitty

Has your GP prescribed it before and is now refusing, or has the endo always prescribed it up to now?

[knitwitty in reply to SeasideSusie]

Hi SeasideSusie

I initiated it myself ( see reply above to SD) but only because no one would prescribe it , and I only did that because I felt so awful. I took the DIO2 test for my own peace of mind and tested positive for the gene polymorphism.

I feel so much better taking the T3 I take 12.5 mcg split into 2 doses and I have monitored my bloods myself to ensure I don't become overmedicated.

I feel completely hung out to dry by the medical profession over this, you'd think I was asking for the moon.

I want it acknowledged that I need this medication and I could not function on T4 alone, if I was taken into hospital in an emergency I would still need it but at the moment it would not be given to me.

Apologies for the rant!

[SlowDragon Administrator in reply to knitwitty]

I totally I agree with you

I was adamant NHS should prescribe something that is an absolutely essential daily medication. Like you I am Heterozygous Dio2

Suggest you contact your endo ...you may need to be officially prescribed via hospital for 3 months

It’s ludicrous situation....

[knitwitty in reply to SlowDragon]

Thank you I do have an endo appointment in June ( I am not sure if that will go ahead , most probably it will be via a telephone consultation) and I shall raise it again.

I shall also contact my MP again as I refuse to let this drop not just for my sake but for others who don't have the energy to fight for themselves.

Thanks for your replies.

[DippyDame in reply to knitwitty]

No apologies needed....I'm in a similar situation.

I have RTH and need a huge dose of T3..

My GP knows I self medicate with T3....but queried, " what will you do if you go into hospital/a nursing home!"

Die! Was my first thought but stupidly I kept that thought to myself!

"Hung out to dry' sums it up!

The whole crazy issue smacks of medical negligence....but medic's ears

/minds close at the mention of T3.

It',s 2am... sleep evades me tonight but I'm grateful to be able to rant to fellow thyroid warriors.

Take care

DD

[SlowDragon Administrator]

This is quite clear ...GP can continue prescribing

formulary.panmerseyapc.nhs....

[knitwitty in reply to SlowDragon]

Thank you that is the document I have , do you not think it is ambiguous? the endo is using the quote to say my GP can prescribe and the GP is using the other quote to say they can't.

Grrr...

[SlowDragon Administrator in reply to knitwitty]

The endo has presumably written to your GP re prescribing T3....can you get access to that letter

[knitwitty in reply to SlowDragon]

Yes I have a copy of both letters.

[SlowDragon Administrator in reply to knitwitty]

Then that should be enough ...

Not saying it will be

[knitwitty in reply to SlowDragon]

I know, thanks for your replies, I was hoping someone would have a killer line up their sleeve that I could trot out to the GP tomorrow!!

[SlowDragon Administrator]

Also this

openprescribing.net/analyse...

[knitwitty in reply to SlowDragon]

I also used that argument to say that people were already being prescribed liothyronine and they just said that those were people already on the drug historically and that they didn't have to prescribe it going forward!!

Double Grrr...