Hi everyone ❤️So after last Friday seeing my gp who prescribed antihistamines to counter act me having an intolorence to the teva t4 and me finding out the antihistamine contains mannitol and other fillers I know I'm intolorent to, and the teva t4 containing mannitol also, I decided not to take the antihistamine tablets therefore not able to take the teva T4.
It's now been 15 days off my thyroid medication, I felt the gp who prescribed the antihistamine should again be awear I'm still not able to take the Teva T4, because of the antihistamine having certain fillers especially mannitol.
So I go to the surgery this morning with a small note for the gp out laying this, honestly it's straight forward "can you please see that the gp I saw on Friday Dr ###### gets this note, it's important she knows what's going on as I still can't take my thyroid medication"
I try to explain why to this receptionists, but are just told she cannot just give the gp a note🤦♀️ WHY? she explains that all she can do is pop it on the notes for any gp to read😡 and cannot put the whole note up because of restricted room in the box.
I again reiterate it's important that someone sees I'm not taking any thyroid medication 15 days now!
No response, I again ask if the gp I saw will see the note, she then tells me to call next week to get an appointment with a gp as she can't help, I tell her I've been trying for over 3wks to get an appointment and wrote to the practice manager about this and with in 24 hours you got me an appointment.
This is no trivial matter, I don't just have a sore throat or a bad headache, I'm not getting any thyroid medication because of intolorences to it.
She then began to type saying "so your not taking your thyroid medication?
I say" yes because of the intolorences to it, and the gp prescribed the antihistamine to counteract the intolorences but the antihistamine had fillers in that I'm intolorent to also.. 🤦♀️ Good god!! Should it be this hard?
She again referred me to the appointment system for next week 😡
By now I'm really peed off I'm getting nowhere with this woman, I do unfortunately raise my voice slightly saying "this should not be this hard, what I'm I soupose to do? Just go home and hope for the best?
I then tell her I should also be having a full thyroid blood panel done as I've been off thyroid medication for 15 days, and it as to be done first thing, a morning appointment.
She pipes up and says I've never heard of that thyroid blood can be taken any time of the day😡
So I pipe up and say.. "I've been going through this since 2018 I've consulted on thyroid blood tests being taken and the morning is the best time, with water only before blood test.
Now she tells me to stop shouting, she will not put up with it, there is nothing more she can do other than putting part of this note up on the computer for any gp to look at.
I ask if she would consider me an emergency appointment candidate... NO was the response 😡
I responded by saying "if I were a diabetic and came in here today saying I cannot get my insulin into my body, would you allow me to just leave, go home ring the surgery next week in the hope I can see a gp?
Again no response 😡 before I leave I apologise to her for my raised voice, but say I'm very frightened not taking any thyroid medication for 15 days as I have no thyroid, and no means of making any T4, T3,
She just lords over my apology saying I'm sorry but I can't do anything else 😞
I hope she can sleep at night, because I'd like to see what she would do if it were a member of her family getting this treatment 😡
Sorry for the long post, but I'm so depressed right now, I'm giving myself sometime so gather everything, then I'm writing to the practice manager about my experience today.
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birkie
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To be truthful no... I don't even know what that is 🤦♀️ and if we have it, I'm in Cumbria we have a very small town with the worst gps surgerys going.None have good reviews, I'd like to move but I'm in mid referral to endocrinologist, rheumatologist, and gastro.
But the thing that is making me the most angry is I've tried for 2 years on T4 lactose free, moved to T3.. 2 and a half years lactose free with the same gastric issues, but no endocrinologist wants to address it putting me back on T4 teva which contains mannitol amongst other fillers.
And that my surgery really don't care about me not taking any thyroid medication even knowing I don't have a thyroid.
I can't complain to PALs at the moment because the gp is sending me to the endocrinologist, but what is the Healthwatch and how do I go about doing something about sorting this appalling surgery out😔
You can go on your local Healthwatch site, who can help with health treatment in your area. Yours is hhtps://healthwatchcumberland.co.uk Tel: 0300 303 8567. Hope this might be able to help you. Maybe someone else might be able to explain more fully what Healthwatch can do.
Thank you for that information, ❤️ I really don't have many options within the surgery, I also put in the note to the gp about the vencamil T4 and could she prescribe it for me, but I don't think the receptionist could get it all on the note box🤦♀️
Hi, Birdie, I had the same and it made me feel awful. The only thyroxine that does not have it in or any contact with mannitol is Mercury Pharma. I went into the pharmacy, told them that my mouth swelled and how awful I felt. They do not want to give you Mercury because it’s more expensive but I managed to get it put on my notes. Hope this helps, if you have packets of teva left, take the numbers off of them. There is a website where you can list the problems you’ve had. The French actually banned mannitol. Please list how you get on. Good luck
Some great members have suggested vencamil (Aristo) which as neither lactose or mannitol in it, I can't think for the life of me why the endocrinologist didn't recommend it... and I mentioned it in my note to the gp yesterday but the nasty receptionist said she only had a limited amount of room for the notes😡.
Another bug bare is when endocrinologists and gps refute the claims that lactose or mannitol can give you side effects, I've been fighting this for 4 and a half years now😞
When the formulation in France changed, they did temporarily return the old (non-mannitol) formulation to market.
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. There is now a specific world desiccated thyroid document.
The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.
Do you have a friend who could take you to A+E and say they found you collapsed? When you finally get to see a doctor, mutter in a confused way that your GP has not given you the necessary thyroid medication and you have been without for some time. This should raise alarm bells and they should test you straight away and arrange a prescription. Your GP will get a slightly wiffy letter which may make him wake up.
Of course you should not have to do all this, but the longer you are without thyroid support, the longer it will take to get better. Good luck!
It's a thought🤔 to be honest I've just decided if I feel faint or woozy or sick I'm just going to get to A&E.I've just come back from my rheumatologist appointment, she seemed to listen to my problems, I took my medical history and thank the lord I did🙏
She asked what as been happening, I started with my second diagnosis of phpt in June 23, she looked on her computer and told me I didn't have primary hyperparathyroidism, I then said "is that report from the endocrinologist Dr ######"
"yes she firmly stated in 2022 you don't have that condition"
Out comes the big guns... The actual letter of diagnosis of primary hyperparathyroidism on June 22nd 2023, by a surgeon in Liverpool who said I'd probably had it for years, my bloods show it👏
Honestly it was like I'd put the ace card down in a poker game and the pot was 1 million😂.. She went on to apologise after reading the letter, I said "so if I'd not brought this letter along you would have automatically believed what was written on that screen"
"Yes am sorry to say I would have"
That's getting wiped from my records and the diagnosis of primary hyperparathyroidism is getting put on my records 👍
I'm still waiting for any gp to respond to the supposed notes this receptionist wrote up yesterday 🙄
And I now have the endocrinologist appointment it's for June 2024🤦♀️
Wonder how I will be feeling by then with no thyroid medication 😂
In one of these I bet... ⚰️ 😂 Just a joke I need a laugh 🤣
Its infuriating to deal with desk jockeys at your medical practice that decided they are the clinic police …. Just had issue with my own desk jockey clinic police.
You should also request a visit to and gastroenterologists and see what they can do he/she might actually have a better grip on medicine intolerances.
Got gastro appointment for 9th March.... Wait for it.... Phone appointment 😂😂😂😂😂😂😂 how in the world will this gastro be able to see what I'm passing in the way of diarrhoea (got photos 💩) how can he examine me over a phone🤦♀️.My gp told me to ask for a face to face appointment, I said "it should already BE a face to face appointment" 🤦♀️.
Don't get me started with these gp receptionists 😡
Trying to tell me how thyroid bloods are taken😡 don't make me laugh lady!!
I told her tho, how they are actually taken... Obviously didn't like that because her face looked like she'd sucked on a lemon.
It's like trying to get past the palace guards💂
Firstly she should have contacted the doctor and took advice as to whether I'd need to be seen as I've been without thyroid medication for 15 days now.
I do feel I need to possibly contact healthwatch (a member suggested it yesterday ❤️) I did mention in the note about vencamil for the attention of the gp, but I'm unsure the receptionist had enough room in her little note box for that most important info😡
I am willing to try other thyroid medication just not the ones (teva) that I'm intolorent to.... How hard can it be Batty1🤷♀️
I forgot you had phone appointment for Gastro … maybe just maybe he will squeeze you in as In person appointment (call) and ask at least you can add this to you complaint arsenal…. Don’t get me started on desk jockey’s who act like the security guards for the doctors…These desk jockeys are not doctors or nurses and the managers of the clinic should start reprimanding these twits.
I'm reporting this receptionists actions to the practice manager and reiterating... I don't think a receptionist should be telling a patient how thyroid bloods are taken, especially as she got it so wrong.See... Next they'll be saying the receptionists have the know how to Diagnose us... No need to see a gp... 🤣🤣🤣🤣🤣
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