Liothyronine private prescription, should I notify GP and how?

[inthedoldrums]

I am just awaiting delivery of my first Liothyronine by private prescription and am unsure of the protocol. I presume I should keep my GP in the loop but am unsure. Also, I have moved out of my GP's area but haven't told them and use my son's address in the area for correspondence. I did this because my GP has been really good on other matters and was happy to refer me to Endo. It was just that the endo was unhelpful. Does anyone know for sure if you can still use the GP of your choice even if you are outside of their area?

Thanks in advance for any help.

[Forestgarden]

I'm not sure about using the gp out of area, but as far as telling your gp about the lio, well that is up to you. I asked my private endo not to tell my gp because I was afraid they'd be difficult about keeping on prescribing my levo. However, I (reluctantly) had my annual chronic disease check up, and ended up having a conversation with a very helpful nurse who phoned asking me to reduce my levo (low tsh). I explained the situation, and she was happy I obviously had it under control and knew what I was doing and ended up making no changes to my levo prescription. I think they're just happy not to bear the responsibility any more.

[inthedoldrums in reply to Forestgarden]

Thank you for that and that is something I hadn't thought of, it showing up on blood tests so they will know then in any case. Best wishes.

[debra_bill in reply to Forestgarden]

Wow I want your doc! Mine has taken as much T4 off me as they can, without withdrawing it completely.

[Forestgarden in reply to debra_bill]

My gp is awful, dismissive, exasperated with my 'woes', hence why I was reluctant to tell them about the lio, and reluctant to have my annual check up. So, when I got the follow up call from the nurse I was expecting a fight! I was gobsmacked to actually speak to someone who understood. Unfortunately I don't know who she was so unlikely to get that lucky again!

[debra_bill in reply to Forestgarden]

Oh and I was thinking you'd found a unicorn.

[HealthStarDust]

In case you are not aware, a piece of law or some kind of policy type thing came in some years ago that allowed you stay with your GP practice even if you moved out of area. There are multiple reasons where Thai could be considered eg. if you work in the same area as where your GP is based. However, I know plenty of people that move out of area and keep their GP. Your GP might be willing to do the same for you.

As for self treating. Absolutely keep GP in the loop as I feel it is the sort of thing that need to be on your record in an emergency.

[inthedoldrums in reply to HealthStarDust]

Thank you so much for taking the time. I think you are right I will let him know and probably phone practice to see if they would carry on with out of area patient. It doesn't normally matter that much but if my private prescribing GP contacts them then there could well be an address mix up. Be sure your sins will find you out. Hahaha!

[Sparklingsunshine in reply to inthedoldrums]

I self source T3 and get low dose Naltrexone for Fibro privately. I havent told my GP. I havent had an NHS blood test since I started T3, although have tested privately. I havent had to butt heads with my surgery as yet over my thyroid treatment fortunately, unlike many members here, but nor do I feel I owe them an explanation.

They wouldnt prescribe LDN, but then cant be surprised if I get it elsewhere. If and when the TSH malarkey rears its ugly head when I next have a blood test then I'll fall off that bridge when I get to it.

Its a tough call, I'm guessing a GP will react more favourably to you getting it privately prescribed, than admitting its self sourced as they will see that a medical professional is involved.

[inthedoldrums in reply to Sparklingsunshine]

Thanks for your reply. It is helpful. I think I will tell the GP since, as you say, it is privately prescribed by a GP. I am interested that you are on LDN as that was going to be my next foray after I get the T3 up to optimum dose. I suffer from CFS so if the T3 doesn't completely work then I wouldn't mind giving LDN a go. Do you find it works well for your Fibro? I don't have Fibro but think that the CFS comes from the same source. Best wishes to you.

[Sparklingsunshine in reply to inthedoldrums]

I've tried all the usual Fibro meds, dont take any NHS approved ones at the moment, they are all hideous. I had significant side effects with all of them. So LDN was a last resort for me. I do find it helpful, not earth shatteringly so.

I also have Ehlers Danlos so its tough to differentiate between the two conditions in terms of symptoms. I would always say to give LDN a go but keep your expectations realistic.

A lot of people on the forum think Fibro/ CFS is just untreated hypo but even with T3 added and I also tried NDT, my Fibro hasn't gone away. However I also have EDS so that's a complicating factor. If I'm honest I think the majority of my issues are EDS.

[inthedoldrums in reply to Sparklingsunshine]

Thanks for that and sorry to hear your health is even more complicated. I must say that since I have had to try and make my own way with this illness, I have become much more suspicious of all of their drugs because of the dreadful side effects. Over prescribed on Levothyroxine burned me out and tipped me into CFS. I don't trust them at all now. Best wishes to you and I hope for your improvement.

[virtualreality]

Hi there, my private Endocrinologist writes to my GP after each annual T3 review to keep them updated and provide latest thyroid blood test results. It makes sure that all relevant medical info is on my record and hasn't affected T4 prescribing (that was adjusted down when I added T3). It also means that there is a record of medical responsibility for the T3 prescription which may help to reassure GPs prescribing T4.

[inthedoldrums in reply to virtualreality]

Thank you for replying. I think you are right and I will do that. Best wishes.

[tattybogle]

Does anyone know for sure if you can still use the GP of your choice even if you are outside of their area?

~ only until they find out where you really live ... then, they 'll probably boot you off . They don't have to take any patients outside their boundary.. some may do , but they can legitimately say no.

i got away with it for 4 yrs , got my mail redirected so i still got any medical appt's etc ...but then my daughter had some hospital appt's and an op. and at some point we had to use the real address for something .. and shortly afterwards i got letter from Gp surgery asking us politely to bugger off.

Note this was around 2016 ... things could have changed since .

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

bma.org.uk/advice-and-suppo...

"Out-of-area registrations and patient choice

GP practices can register patients who live outside their practice area, with home visit services provided separately. Our guidance explains the regulations, registration process and key concerns.

There is no obligation to participate in this scheme – practices can choose whether to register out-of-area patients. "

[inthedoldrums in reply to tattybogle]

Oh thanks so much for that and taking the time. Funnily, I was in hospital 2 years ago for an op and in recovery, almost let the cat out of the bag. "Oh, you're from such and such a place, aren't you?" "Er, no, I mean yes!" It is an extra hassle I could do without but I took against my local GP for her bad treatment of my Hypothyroidism and for making me look like a fool behind my back in her Consultant referral letter which he kindly showed me. I was devastated by what she said but I think most of us have been through that. 8 years down the line, I still vent about her. I think the worst part was how nice she was face to face. Ah well, at least that part of the journey is over. Best wishes to you and your name makes me laugh as I am originally from Northeast Scotland an know what a tatty bogle is. Hahaha!

[helvella Administrator Thyroid UK]

Three steps to the way I look at this:

First - of course you tell your GP. Otherwise what if you have an issue where this is relevant? And if it is not on your records, no-one will know if you were unfortunate enough to have an emergency situation.

Second - of course don’t tell your GP. There is no legal requirement to do so and if you want to keep something to yourself, that is entirely your right. And if the GP has already expressed less than complete support, it seems obvious to avoid telling them.

Third - the last thing you need is to be ill, for this T3 issue to be relevant, and the GP to be furious you have kept them in the dark. Or having to inform the GP when you are not prepared (mentally, maybe with some documentation, etc.) and there are other things going on.

There simply is no “correct” answer.

Maybe take some time and choose how you will tell the GP? Prepare yourself, some pieces of paper (short and simple), arrange a time and explain.

(It is so much easier to say this as someone who does NOT need to do this. I’m only trying to formulate some thoughts. This is not in any sense meant to be telling you what to do.)

[inthedoldrums in reply to helvella]

Oh, thank you so much for setting it out like that. It helps make things clearer. I have decided that I should definitely tell him, it makes perfect sense now. Best wishes and thanks so much for taking the time to set it out for me.

[rosael56]

I take NDT and I told my GP. I get it privately and I told him I'd be managing my thyroid condition privately from now on. He was fine about it and just said best of luck, we're here if you need help with anything else.

[inthedoldrums in reply to rosael56]

Thank you so much and think you are right. My doctor's a pretty laid back person so it should go well enough. Best wishes.

[BiscuitBaby]

Whereabouts in the northeast are you? Thats where I am. My private endo wrote to my gp when she prescribed t3 and asked them to prescribe on the nhs. After a bit of a hoo-ha they are now doing that. It's working out OK. As long as I stand my ground it's fine. They test blood and largely leave it alone. As for the gp thing, they are doing a lot of building in my gp area and a few years ago they wrote to existing patients asking thenvto move! To where I'm not sure as there are hardly any gp surgeries. Hope you get sorted.

[inthedoldrums in reply to BiscuitBaby]

Oh, I'm not in the Northeast anymore, I just am originally from there but flew the nest as a teenager and am now in the Southwest of England. Thanks for the advice on the T3 prescribing. I thought I would trial it first and see if it starts to work before preparing for battle with them. Thanks for your reply and best wishes for you on your health journey too.