Pulling a fast one on Big Pharma? Probably not.

[steviecat]

Many of us who use NDT, or buy T3 from abroad, are not letting doctors into our guilty secret. Therefore, I imagine that we are still getting prescriptions for Levo. and stockpiling the stuff. If not, then the doctors must be getting mighty suspicious... So Big Pharma is still benefitting from us, whether we use the stuff or not! Struck me as ironic. I even had a little chuckle, which, given that there is not too much to smile about when one is afflicted with thyroid problems, has to be a small win

[SeasideSusie Remembering]

Well, I buy T3 from abroad but add it to my Levo, I think a lot of us do that.

As for stockpiling it, I think those who still pick​ up their Levo prescription possibly don't actually get it made up if they don't use it. They probably want their diagnosis and medication kept on record for future use if ever they have to revert to Levo for whatever reason, and of course to keep the right to free prescriptions if they are in England. There's be no point in stockpiling Levo if it's not used.

[steviecat in reply to SeasideSusie]

Hey, Sea, I hadn't realised you could get a prescription, not fill it and no one would be any the wiser... My bad! However, there are times when a little Levo. in reserve might come in handy...

[Sweetart in reply to steviecat]

Yes, neither did I, I will now bear this in mind for the future as I still feel pants I have found the pharmacist to be more helpful on a couple of occasions now 🤒

[Rapunzel]

Hey steviecat

I had a word with the pharmacist at my local ASDA. I told her what I was taking and asked that in future her team accede to my request not to dispense the T4, just my other meds. She was remarkably sanguine about it all. I had gone prepared with a recent blue horizon blood test result and I bought a blood pressure monitor which keeps the last 30 days readings, an improvement on my ancient model.

[StitchFairy]

Some time after I'd stopped taking levothyroxine and gone down the self treatment route, I stopped bothering with prescriptions at all. Haven't requested anything for thyroid for about four years now. It was just so much hassle having to remember to put in for a new script every 8 weeks and then get to the surgery to pick it up. Surgery was very disorganised and scripts were never ready when they should be!

I thought it would get noticed that I wasn't asking for my levothyroxine, and expected to get called in about it. But my annual review date came and went without so much as a squeak from the surgery. No blood test to see how I'm doing, no call to ask why I'm not putting in for scripts, just complete silence.

No-one cares that I have been diagnosed with autoimmune thyroid disease, but no longer ask for any hormone replacement medication. I might as well be dead for all the difference it makes.

[steviecat in reply to StitchFairy]

Hey, Stitch.

Well that speaks volumes about a once caring health service. I feel for you. However, it does beg the question: how are you monitoring your status? Private bloods? Or just the way you are?

[StitchFairy in reply to steviecat]

I go by how I feel mostly, but I do also private test every now and then if I change meds or simply feel unsure of where I'm at.

[steviecat in reply to StitchFairy]

Hey, Stitch. That seems like a fair way of doing things. If you are feeling ok, then, recourse to doctors is probably not going to help.

[StitchFairy in reply to steviecat]

It helps my self esteem tremendously not to have to grovel for my thyroid test results any more!

[SeasideSusie Remembering in reply to StitchFairy]

StitchFairy Sounds a bit like my surgery. The last time I was routinely called for a thyroid function test was 3 years ago, I used to get a reminder annually before. I do still have my Levo every month, prescribed and picked up, but I just think they don't bother with lots of things any more. Suits me though as I do private testing now I've added T3 which they don't know about.

I'm supposed to have spirometry tests once or twice a year with the respiratory nurse (I have lung disease) and I even have to ring up and remind them I'm overdue for that.

[StitchFairy in reply to SeasideSusie]

I thought at one time they used to get a payment for every annual thyroid test and med review. Am guessing that's no longer the case and therefore they don't bother any more.

[Hidden in reply to StitchFairy]

Sounds about right 😒. It is all about the coffers.

One thing I can't get my head around is asthma meds - my hubby has been asthmatic all his life but his condition isn't one to qualify for free prescriptions. But he gets a letter most years to go to the clinic, which he never does. I can only think it's because the surgery get some financial reward for this, and yet thyroid meds are on the free life list, but no one seems to give a fig!

[UrsaP in reply to SeasideSusie]

The trend here is that gp's are not bothering if patients aren't - hence reducing their work load and I'm sure in some way by not being 'monitored' may well be playing into the gp's hands, confirming their analysis that patients are actually benefitting from t4 (they don't know that people are not actually bothering to get it - so skews their 'figures' in their favour! NO disrespect to anyone doing this - totally understandable - but just something we all need to consider. Somehow we, all, who have/are self helped ourselves, whether our gp knows or not, need to be able to stand up and be counted somehow to show the bigger, more accurate picture.

[cwill in reply to StitchFairy]

This is my experience. I had to stop after my dose was effectively halved overnight, no discussion just found out at the pharmacy as our prescriptions have to go to set pharmacy. So took NDT and have not picked any more levo up as 50 was never going to hit the spot. And complete silence since November. As you say for someone on medication for life they are remarkably incurious. But at present I view this as good as I do not want to enter into discussions that are not obviously beneficial to me. I will not waste any more energy trying to take the surgery and two pharmacies with me. Perhaps will send them my video when I make it of my awful time with these multiple illnesses that miraculously got way better once I got some T3 in my system.

[steviecat]

Hey, Rapunzel.

That is interesting. I guess I'm a little more nervy because I live in france and NDT is, er, illegal... But on the basis of what you guys are saying, it's probably the case that I can also take the script and not fill it. Be useful to know if other folks' realise this. Thank you. Stevie.

[Rapunzel in reply to steviecat]

I've taken that pharmacy and my dentist into my confidence b/c of a need for no adrenaline in any numbing jabs I might need. Saw a private gyne last year and told him, too...he shook my hand before I'd sat down and was lovely, cheering and avuncular. Probably didn't take any longer consulting him than it does my broom up his @rse GP but

If I told that smart alec sh*t what I'm taking, it would be like a confession of murder. As he couldn't arrest me, he'd definitely strike me off unless I resumed levo He's just got to know best. He knows jack . Like the GP @rses on Five live this morning c10.35 here bbc.co.uk/5live/programmes/...

Sorry. Getting angry again. Surely something can be done ? 👿 And I mean about the very deep well into which we all appear to be falling if we can't tolerate monotherapy, not my lack of anger management. A shrink friend told me that another word for my constant frothing was, 'passionate'

[cwill in reply to Rapunzel]

I like that Rapunzel. I think that I must be passionate too as there is so much to be passionate about (now I have the energy). When I tried the idea of friends describing me in three words the ones they chose were feisty x3. Obviously getting back to my normal self,

[Rapunzel]

If feisty means light the blue touch paper and run like bliddy hell...I'm in

Nice to know I'm not alone; may your recovery continue apace

[cwill in reply to Rapunzel]

Well my sons tell me that that is correct and add intimidating. We could be formidable! 🗣💥 Shame that the carers don't notice and bumble on regardless of my Paddington stares of incredulity, and the rest.

[LtAngua52]

I've not requested a prescription for levothyroxine since last summer when I started self medicating with t3. I've not heard anything from my surgery to ask why. They probably haven't noticed!

[Sweetart]

I do think everything now is about cost I was told yesterday that even with a 10yr tsh level which looks like a mountain range ,that I can't test every 8 weeks to keep my Tsh in normal range (I have had TT) even with me pointing said mountain range out she said it was a waste of resources!!!!! So she was saying I have to get ill before I can be tested again they are not going to keep it I check. very poor service. I want support from my dr not a flipping argument

I think the labs and the surgeries operate independently and the surgery gets told off if you go in too often like wise if you just end up in casualty ,with something which can be delt with by the GP.

[silverfox7]

I saw a different doctor about a review which was fine till she saw I hadn't requested Levo for years-had I stopped taking it? (!!!!) so I calmly said that she didn't have to worry about it as I let my endo in ______ sort my meds!

But she accessed my results and said Oh you're on grains and before I could think about what to say next she said I knew someon in the practice was but I didn't know who so I calmly said that must be me and she agreed! I don't think it is but hey stopped getting my normal GP in bother!!!

[penny]

I was diagnosed hypo. by a private doctor many years ago and managed to get NDT on prescription; thus far so good - NDT ran out worldwide and I was put on levo., at which point I stopped tolerating T4 and became very sick. I then transferred to T3 which was fine for a while until my doctor wrote to say that he would not be prescribing T3 any more as according to their records I am not and never have been hypothyroid! (20 years of illness) I assume that this is because their tsh tests were always within range and then <0.01 and therefore I was overdosing. My private doctor wrote to my GP with the Genova test results and pointing out that tsh testing is a waste of time on its own. I've not bothered for the last 5 years or so and buy my T3 abroad.

[Hidden]

More worrying, with my old GP I didn't request a scrip for Levo for around 5 years. Nobody ever queried how I was (although they still, grudgingly, did me a blood test once a year). What did they think? A miracle cure had taken place? NHS: bah!

[Gcart]

I remember the old FAMILY doctors, I can actually remember him coming to the house unsummoned to see if I, a little girl then , was rcovering from yet another stomach upset

He knew the whole families medical history.

I can assure you that it wasn't uncommon then.

It's a very sorry state now, can't see it getting better. LOL

[Hidden]

I have kept my GP fully aware of me taking NDT and he has never queried the fact. He probably realises what sort of a reply he would get from me if he offered any criticism. He simply offers no comments at all.

See this from the GMC: “CONSENT: PATIENTS AND DOCTORS MAKING DECISIONS TOGETHER. (9) YOU MUST give patients the information they want or need about (l) any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer.”

Just Google it to get the source.

If you did the same as me then you could embarrass the doc if he actually said he agreed with you.