As some of you may know my gp stopped my T3 until I saw the endo on Dec 27th which didn't go well😠.. My gp said I would see the endo before my T3 ran out😂 this of course never happened so she gave me one months supply to tide me over.
The appointment with the endo was for thyroid medication that didn't give me gut issues but she just wanted to put me back on T4 🤦♀️which gives me gut issues along with the T3 I'm on, she also stopped my T3 and dismissed me, telling me to find another endocrinologist 😂.
Today I managed to go to the surgery to convey what the endo said, and that my T3 as now been stopped, the receptionist confirmed that my T3 had indeed been stopped.
I told the receptionist I now have approximately 5 days meds left, what do I do?
I also mentioned this appointment with the endo was an urgent referral, and seeing as she doesn't want to deal with me, and as not prescribed any thyroid medication, should I not see a gp on an urgent appointment... NO😠 THS.. (11.58)
RECEPTIONIST.. Call the prescription line up and speek to someone 😡
I come home and do just that, to be told the T3 as been stopped and the gp will decide if they want to reinstalled the prescription, the gp will need to be informed of this, and I'm afraid you will just have to wait to see if the prescription gets reinstalled.
I've had enough, just so freeking sick of being treated like I have a bit of a head cold😡
The NHS are not working, and certainly don't care about patients health 😠😠😠😠
Rant over sorry guys🤦♀️
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birkie
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The only option is private consultation. I know you want to try NDT. Look at lists here
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, and within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3 or NDT
Some of the private Doctors or endocrinologists on these lists will prescribe NDT
You would need Armour.
Erfa is NOT lactose free
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
I spoke to the receptionist on a number of issues, one being the endocrinologist I saw on Dec 27th who dismissed me with no care told me to get my own endocrinologist.
I wish to speak to the gp on this matter, and wish to chose my own endocrinologist from a list, obviously I don't know what will happen, but the only way I can talk to a gp is to ring my surgery between 8am/9am in the hope I can get an appointment to discuss this.
But although I will be doing that on Monday morning, i am writing a letter to the gp who referred me to the endo, out laying what the endocrinologist said, leaving me with no medication, not looking at recent blood work and refusing to look over my results of my F18 pet scan. 👍
I'm unable to pay for a private endocrinologist appointment at present, and my son as to many financial commitments, so I really don't want to ask him again 🤦♀️ so I'm stuck caged within the NHS system 😢
I'm pretty sure Roseway Labs can prescribe and dispense Armor. Its private so an ongoing cost but their GP prescriber charges £30 for the phone consultation and a prescription and then you pay for the actual cost of the medication.
I use them for LDN and have found them to be very good. The prescriber has also left me a year's worth of repeat prescriptions so now all I pay for is the LDN every 3 months.
I know they ask you to provide recent blood results if you are looking for thyroid meds, think they can prescribe T3. Not sure which brands though.
I realise finances are an issue Birkie so I really hope I'm not coming across as insensitive,but they would work out considerably cheaper than a private Endo if you were interested 😊
I'll need to do something, I have around 5 days T3 left now, I'm on disability, and personally I don't think I should have to go through this, non of us should😠Why did they set up the NHS????
I've heard of those labs, and I'll probably need to bite the bullet and pay for the meds, but it's going to be a waist of money if they effect my bowles although I suppose I could get one months supply.
My last TSH was 11.58..put on the report... Hypothyroid again.. Refer to endocrinologist.
Could you private message me with the labs info, if that's OK.. 👍
I realise that you struggled with taking levo previously and the effect the excipients had on your bowels. But did you consider trying Vencamil brand like some members suggested on a previous post?
That's why I was sent to the endo, she wasn't interested in any other thyroid medication but T4, I asked her about NDT she said no way would we prescribe that, it's T4 or nothing.That's why I refuse, because it never worked the other 2 times I was on it both tablets and liquid 🤷♀️.
Obviously when I get to see the endocrinologist of my choice, I will be mentioning the other thyroid medication you and other members have mentioned.
Sorry, but she sounds rather horrible and that's putting it very very mildly. A "this is my script and I'm sticking to it" kind of medic. I'm really sorry you are having to go through this 😪
The problem was I gave her the reason to stop my T3 in that I mean.. I showed her the photos of what I'm passing (diarrhoea) not nice 🤢 she immediately said its the T3 causing that.. But I was cheeky and told her these photos are actually when I was on the T4.... These photos are me on the T3 now.
A bit underhanded I know, but I just knew she'd jump on T3 but as I told her it makes NO difference what you put me on T4, T3 the gut issues will remain.
Yes T3 only Roma and lactose free, I tried and failed to trilated up to 25mg it makes the gut issues worse, so I'm stuck on 20mg which isn't a big dose but I always feel hyper🤷♀️.I was told all my hyper symptoms would go after TT... Honestly they have not and the endocrinologist just blames the T3 🤦♀️
I believe Roma, Sigmapharm/Viatris, Strides and Teva liothyronine are all lactose-free. (In other words, only Advanz/Mercury and Morningside contain lactose.)
Do double check though!
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
Yeah roma/teva are lactose free, but for some reason I'm still suffering from server diarrhea, cramps, and bad inflammation in my large and small intestines, the pain is unbearable and I look pregnant, bloated.I was the same on teva, so gp changed me to Roma, it was the same on all the T4s, even oral liquid which I vomited back.
I know it's the medication because I've come of both T4, T3 to see if symptoms persist, they always go, and my bloated stomach goes down, the diarrhoea stops and the cramps and pain go, I can eat without my food shooting through me, go back on the meds and within 3/4 days I'm back in hell.
Obviously I'm clutching at every straw here, but I'd just like some endocrinologist to actually listen to me, it's not like I haven't got proof of what I'm passing (got the photos on my phone)
But so far all they want to do is put me back on T4, defeating the object I'm just going round in circles, getting more unwell 🤦♀️
Hi Birkie.So sorry you are having to put up with this.
I researched T3 medication a while back. If I need it in future, I would need lactose free, maize/corn starch free, etc. Everyone seems to like Thybon but because of the excipients I would expect it to give me diarrhoea.
I came across mention of a " hospital prescribed only t3" that I believe would suit me if needed it, but my Health Authority doesn't prescribe T3. I don't know if hospitals can still prescribe this T3 or not, but it would need to be a hospital who prescribe it IF it still exists. It is called Mayne Pharma T3 and the excipient is talc.
Ask the hospital endocrinologist if it is possible to prescribe this T3 for you to see if you can tolerate it, as it has no lactose, mannitol, maize/corn starch or acacia. If it still exists I don't think you could access it with a private prescription. I believe it needs to be supplied by a hospital.
It does however ring a bell that a long time ago there was something in the media to the effect that ordinary , personal use of talc as a product could be cancer causing????
If that were the case I wouldn't imagine hospitals would be using a T3 product containing talc. It may even be that the Mayne Pharma T3 product might have been discontinued in light of the above. I don't know if it still exists, nor do I know if talc is considered safe or unsafe at the present time.
Thank you for reply, this endo I saw only wanted to put me back on T4, the very T4 she took me off, because she said I had a malabsorbtion /conversion problem.It was her who put me on T3 because my T3 was 1.5, T4 never really moved my T3 up.
She's been playing thyroid medication tennis with me since 2019 putting me on T4, T3, T4, back to T3.. Now wants an ace shot with T4 again... Well no thanks, it's game set and match for me.
I refuse the T4 again, and she just told me to find another endocrinologist 🤷♀️ very professional eh.
So I'm now back to square one in trying to get first to see a gp, got a do the dreaded, call between 8am 9am in the hope I get an appointment, and this appointment I had with the endo in Dec was an urgent referral, T3 stopped now so I've got 2 days T3 left, totally stressed to the max😡😡😡
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