Hello , I have to have a blood test to check out a few things in my stomach . I have been treating myself successfully with NDT that is unlicensed. I do my own finger prick blood tests to ensure my FT3 level is in range but I do of course have suppressed FT4 level .
Should I tell the GP I take NDT or not ? I always say I do t take medication on forms I fill in aswell .
Any advice please but I don’t want to be lectured by the GP either !
Tell them. It’s not illegal. Lecture or not, it’s important your records are up to date should anything happen. They’ll just have to make a note on your record that you ‘self monitor’ or something like that.
Besides, your bro there to be dictated to.
It’s vital you tell your GP. Ignore any negative feedback.
Your records need to be updated
I take NDT and T3. It's prescribed by a private endo who also works for the NHS. My GP practice refuses to put ANY reference to this on my record. The endo writes to them after every consultation with all the details but nothing appears on my record. I have written to the senior Dr and practice manager asking them to put it all on my record, and why that is important, but I have never been graced with any response at all.
Your GP is obliged to keep your record up to date. The fact the correspondence involved comes from an NHS Endo makes his non compliance even more unacceptable.
You should now write to the Practice Manager to inform him / her that you are contacting the CQC about this breach. Then download the CQC form and report the matter to them.
Copy the NHS Endo into the letter to the Practice Manager
Thanks for this. The endo works for the NHS but in a different area to where I live. Also, I see him privately. Finally, although it was my GP that diagnosed Hashimotos, my TSH has never been ‘over range’ so I think my GP just thinks I’m nuts and imagining it all. Under these circumstances are they obliged to add the info to my record? I don’t know. It’s difficult one, I don’t want to fall out with them completely as I need a GP and for other things they’re ok. There isn’t another practice anywhere near that I could move to, but even if there was I could find myself in the same position at the new practice.
Whether your GP thinks your nuts or not, he is under an obligation to keep your record up to date. That includes putting into your notes correspondence from medical professionals who’ve interacted with you. It’s not ‘a difficult one’ at all.
If you’re prepared to accept sloppy practice because you don’t want to upset your GP that’s up to you. You aren’t fighting a matter of principle here. It’s very important that your medical record is accurate.
I don’t care about upsetting them, I’ve been at them for years over this. I just don’t want it having any adverse effect on me. I also don’t know what more I could do to force them. I suspect they file the paper correspondence thus fulfilling their obligation to keep my records up to date, but won’t update the electronic version for anyone to see. I assume it’s because placing it on my record would be an admission that I have a thyroid condition which they don’t, and wouldn’t know how to handle if they did. It’s hard to try a verbal assault as it’s impossible to actually see anyone face to face any more. I have asked my endo to intervene, he promises but as far as I know hasn’t. It just wears you down, life is busy enough without constantly fighting battles like this. I’ll keep trying if I see a suitable opportunity.
You’re obviously very concerned about this. I don’t know what else to suggest.
You say you’re not bothered about upsetting them but you seem concerned about falling out with them - mainly because you don’t want to have to leave the practice.
There must be a compromise here somewhere. How about writing again to Practice Manager and explaining how you feel. Tell them that you’re generally satisfied with the practice but that you want your records to be updated.
If you get no reply or get a negative reply, then it’s a case of going down the CQC route or forgetting it.
Sorry I can’t be more helpful.
You’ve been very helpful, thank you. As I said, I’ll wait my moment but I am wondering about writing again and asking directly why they won’t respond and why, exactly, they won’t add anything to my records. I might also contact PALS, not to act for me but to establish precisely what the rules and legalities are in this instance. It’s always better to be sure of your ground first!
I’m afraid that you’ll get no help from PALS - particularly on a clinical issue.
A good idea to write directly to ask them why they won’t respond.
Definitely tell them
Give them latest copies of your full thyroid test results
I never tell my GP that I am taking NDT. I just turn up every 5 months for my prescription of Levo plus T3. I live in France and it is banned here, so no I don't tell.
I still have blood test but he never says anything so I just carry on with the NDT.
In your situation I wouldn't tell them either! Do you know why NDT is banned in France? I'm in Greece and I think it's banned here too but I've never found out why.
I don't know why, I just found that someone living here posted it some time ago. I had mine sent to the UK repackaged and then sent on here. I had been doing that since 2016.
There are huge Pharmaceutical manufacturers here in France so that's maybe why. It's all about the money.
Sorry I don't know about Greece.
Jo
healthunlocked.com/thyroidu...
greygoose gave this explanation 7 years ago. She lives in France
Thank you I actually think it was GG that mentioned it before but not in that detail.
I was watching a programme last night regarding The New Skinny Pill. It is helping people lose weight but when they stop it the weight goes straight back on. People are also buying it online without to much asked.
A similar story to the one I have just read, just a different pill of course.
I never realised before that a hormone in the stomach talks to the brain to tell it you are now full and to stop eating. Interesting because I must have it as it works on me I have never been overweight and I never feel like overeating, interesting.
That is so interesting. Apparently the same thing happened in the USA with T3 being used for weight loss in private weight loss clinics, which made loads of money, of course. Then people started to die of thyrotoxicosis and ever since T3 became the devil. Even to this day I have heard from doctors that taking T3 will give you a thyroid storm. They probably have no idea where that myth originated from and most likely can not explain why this would happen to a person who actually has thyroid issues such as low FT3 due to conversion problems. They only "know" that T3 is dangerous. Thank goodness, T3 is not illegal (yet) in the USA and Canada, just under prescribed. And this is how money hungry, unscrupulous and most likely ignorant, incompetent healthcare "professionals" ruin it for everybody.
Dear Blissful,
I have recently left France due to numerous reasons, including Big Pharma's grip on all things medical. Even supplements are restricted on potency. In my three years there, I ordered supplements online, including from iherb.fr. At every appointment with my GP, I explained my decades of NDT because I'm allergic to synthetic mediations.Then I asked why NDT was illegal in France... I mean it's the nation of Vive la 'Revolution, after all! He, in typical French fashion, changed the subject without answering. I order my NDT from my US GP who mails it with no issues. Hope this helps...
My husband often changes the subject without answering. He isn’t French.
I think that changing the subject is an internationally employed method of doctors (and, of course, other humans) to avoid a subject for a number of reasons, one being that they don't know and don't want the patient to know that they don't know. It could well be that doctors are especially sensitive to coming off as ignorant.
Do you mean your TSH is most likely suppressed? That will make many doctors freak out as they think it means you are overmedicated. So, even if you don´t tell him, he is likely to say you are on too much levo as your TSH is beyond range. He will then tell you to lower your dose and expect it to be lower at your next appointment. So, if you don´t tell him now, you will have to explain why your TSH remains the same on less levo...
Just out of curiosity: which brand of NDT are you taking?
I don’t think I’m allowed to say what brand I’m taking on here or where I get it from ?
I’m pretty sure it’s an admin rule
You are allowed to say what NDT you are taking, we are just not allowed to talk about suppliers outside of a private message.
Do you take T3 and T4 plus NDT or do you just get your prescription for your T3 and T4 and just take the NDT?
Hi
I take NDT (I self medicate) plus levo from my GP. It didn’t work with just NDT alone.
I don’t tell my GP about NDT, as they know nothing about thyroid to be honest, from past experiences.
When it comes to having bloods from my GP my TSH is always suppressed which they don’t like, then tell me to reduce my dosage.
As I have Hashimotos I just say that as I have Hashimotos you can’t just go by blood results, and I tell them surely it’s how the patient feels, and they have a duty of care to listen to patients. I also tell them, I am experiencing the menopause (this is true) and to mess up any of my medication would mentally impact me.
This seems to do the trick and they leave me alone.
I also monitor my own results with private blood tests.
It’s entirely up to you, and how you feel the GP will react.
Best wishes & good luck.
Hi Thankyou for replying.
So what should I say exactly to GP ?
Oh I monitor my own bloods and I take a NDT from Thailand that is unlicensed !
The GP will freak at that wont they though ?
I've just had the same issue. I was taking my own sourced T3 and Ndt and self monitoring. I decided to try and get my T3 on the NHS. We'll, when the endo saw my suppressed TSH and top of the range T3 they freaked. Told me to stop taking the NDT and reduce the T3 , and they prescribed T4 to replace them . Now she is still not happy with a lower T3 but is desperate to "fix" the suppressed TSH. I know eventually they will stop the T3 and I will go back to self medicating. I feel so well on my current meds and will not let them make me hypo again. Idiots the lot of them!
Hi, It is on my medical records that I take NDT. Unless I am asked, I don't tell them where I purchase it from ( also like you Thailand) Recently after a blood test done by GP surgery, I was asked where I buy NDT from - My answer was. "I buy from a Pharmaceutical company in Asia". I have also in previous GP conversations told them why my TSH is supressed, they don't question further - and tell them I stay well on NDT, as they can see on my blood tests. I have also said to them, I cost you/the practice nothing for medication, and the fact you/GP can only prescribe me something that keeps me unwell is a pretty dire situation. They have nothing to say. I always speak calmly, factually, and true to my self ~ and they just quietly back off. I have never had a negative conversation with them over what i take. Good luck.
Hi…my GP made no comment when I told him about taking NDT. He just took Levo off my repeat prescription….he probably didn’t really understand and probably didn't care…one less drain on the NHS! Susan
am I ask what is NDT and what effect does it have for ppl with hypo and hashi?
NDT = Natural Desiccated Thyroid = desiccated thyroid such as Armour Thyroid. Died, powdered, standardised porcine thyroid glands used as a medicine.
Most abbreviations and acronyms you might wish to understand are in my vade mecum.
helvella's Vade Mecum document is available here:
helvella - Vade Mecum for Thyroid
The term vade mecum means:
1. A referential book such as a handbook or manual.
2. A useful object, constantly carried on one’s person.
Hi Blackpanther46
If you are being prescribed anything for your thyroid condition by your GP/NHS endo, than its not so easy because, they will think that your suppressed TSH(I hope you meant TSH not T4) is due to what they are prescribing for you and will want to adjust your prescription.
If you are just self-medicating, than you can tell them that you are being treated/monitored privately and, that takes it out of their hands completely.
You have every right to have treatment from whoever/wherever you chose and even abroad. That is what I told my GP. I said that I had to go for treatment abroad because my symptoms were being dismissed in UK. They don't need to be aware that you are taking NDT or anything else for that matter. They don't own your body, however if they are testing your thyroid function and the results are "out of range" they will try to make sure that you are not Hyper, your results will suggest that you are if TSH is suppressed.
As far as my suppressed TSH is concerned, when my GP did a thyroid function test (without my knowledge or consent) and promptly freaked out fearing the return of my hyperthyroidism, I told him that I was now hypo, being prescribed levo privately and "of cause, that was the reason behind my suppressed TSH". I spoke with confidence and I think, my GP didn't know about the possibility of TSH being suppressed once you are on thyroid replacement treatment, he didn't even ask me anything further re my diagnosis and treatment.
Hope you can handle your GP with superior knowledge and confidence, just think, you are the one responsible for your health, they are only one of the tools you use to achieve it.
Best of luck 🤗
I told them. It is in my notes. They never read the notes...
I currently tell my GP(s) nothing. Nada. Previous experience simply upping my dosage of T4 was so negative, at a time that I was struggling mentally from low T3 levels and couldn't give a cogent argument in return, that I decided then and there never to mention any self-adjustment or self treating again. In the past I have been threatened with having my prescription given only 'as abd when needed' (currently given in advance) to prevent me modifying my levels myself.
So I play extremely docile and dumb to continue receiving levothyroxine. That said I probably won't be able to do it much longer as my needs have changed and I'm not looking forward to it, I must say.
One of the things that really annoys me are the stories of doctors who put the fear of God into patients to get the patients to do what they want. They make some patients believe that thyroid hormones in any form are very dangerous, but that is not true.
Anyone who needs ammunition to combat this type of propaganda should read this :
I told mine and he cancelled my free prescriptions as he is no longer prescribing levothyroxine! I still have a diagnosed medical condition so do not think this is fair, but can’t be bothered to have any more lectures or be patronised by GPs so it is worth any extra cost!
I have recently had the same dilemma, previously I’ve weaned myself off of my NDT for the GP’s annual blood test & then gradually get myself back on my correct dose of NDT once it’s done but the Levothyroxine makes me so nauseous & takes me so long to get back feeling well again that I decided not to do that again - so of course my blood test showed suppressed TSH, they’ve lowered my Levo which I don’t take anyway & I’ll probably have to come clean on next years blood test.
Currently booked for endoscopy tomorrow but honestly think my stomach issues were related to being under medicated or on Levo as ok again now 🤔
Good luck in whatever you decide & hope you get your stomach issue sorted.
Mary
Osteoporosis diagnosed, GP does not know I am taking NDT
NDT and GP
How should I increase my NDT now?
