Lie. Tell your GP you have switched very slowly from levo to NDT, but have now managed to go on NDT only. I would put the levo you have in the freezer, wrapping the packets up individually and very securely to keep out condensation and moisture. There may come a time when you decide to throw them away. But keeping some spare is a good policy, just for emergencies.
To stop feeling guilty, just remember those times when your doctor told you your ferritin level was fine at 15 (13 - 150), or your B12 was "normal" at 150 when the bottom of the range was 148. You'll get over feeling guilty in no time flat.
Why are you feeling guilty? It's not like our doctors know what they are doing, right?
Most of us just 'use' our doctors for tests and prescriptions anyway. We are happy. They are happy thinking they have helped us ... all God's chilluns are happy. I know how great it is when you start feeling like you have a life again. Why rock the boat? By the way.... thumbs up on feeling better.
I agree with 'humanbean' tell the doc you've managed to switch, they'll be glad you've found something that works for you and if they are the 'money, money, money' type GP's they'll probably be delighted that they can take you off the free prescriptions list cos you're not on thyroxin any more. If you're in the UK that is.
If you aren't entitled to free scripts and only get them free because of the thyroxin I'd check you are still entitled because I think if the doc 'found out' another way it may be fraud, I'm not entirely sure though. I'd look into it before you say anything just in case. I would like to think you are but my hubby says not so. That's just us.
Oh don't say that ? Surely we are still entitled to free prescription we still have thyroid problems we are I think just self medicating . ? Just because I don't take my levothyroxine ( I stopped ordering my levothyroxine about a year ago ) my doctor knows I'm taking t3 only but has never said no more free prescription . ?
I really don't know I said it as a consideration to think about. You can go on line to the NHS prescriptions and maybe get a help like number so you can enquire anonymously.
Nothing about that requires any specific treatment - could be levothyroxine, liothyronine, desiccated thyroid or a T4/T3 combination. It reads that you simply need thyroid hormone replacement - whichever you get, wherever it comes from.
I was in a very similar position to you before Christmas. I was very nervous but decided to bite the bullet and tell my GP. She has cancelled my prescription is for levothyroxine but said she would continue to do my blood tests but more frequently every three months. And although she couldn't advise me on taking NDT, she acknowledged that I'm in charge of my own body and need to do ever I need to do in order to feel well again! Phew what a relief.
Getting your concerns into perspective a packet of levothyroxine cost the NHS 28p. So please don't worry that you are wasting NHS money. Perhaps the NHS need to get wise to other methods of therapy for hypothyroidism problems and stop wasting our time.
Doesn't make any difference to the logic, and very little to the cost, but levothyroxine prices (in NHS terms) are actually a bit more than 28p a month. Particularly if you need a combination of tablets to achieve your dosing requirements.
Well, next time you go, just take a sten gun and... oh, no! That's illegal. Sorry!
Frankly, it's none of his business what you take. He is not your boss, or your headmaster, he's not there to dictate to you, just to advise you. If you Don't take his advice, on your head be it. You're a big girl now, and capable of making your own décisions. So, if he comes across all arrogant, be equally arrogant and politely stand your ground : my life, my body, my health!
As to the levo, you've got a nice little hoard, now, just keep it and, in future - if you decide not to come clean - just take the prescription but Don't get it cashed. That way, you're compliant, and still legal. No fraud. They have no way of knowing when you stopped taking the Levo. And have no way of knowing if you're still taking it - except by blood tests... lol
Check out the salary Of top NHS managers and their lease cars! About eight years ago I was on a holiday with a small group who were mostly newly retired GPs .They were bitter as Labour had doubled the salary of GPs just after they retired to £100000 plus with no after hours or weekends! There are funds for some things but not others.
You contribute to a forum which helps other people with your condition. Thank you.
If you're a typical hypo, you are likely to be taking other prescription medicines which are now 'free' because of your medical exemption certificate.
Have you tried asking your dispensing pharmacist to fulfill the other items but not the levo ? That works for me, but every so often, as hb suggests, I'll have the script fulfilled and hoard the levo at the bottom of my wardrobe. Sooner or later, someone at Uni Pharma may notice that they're manufacturing more T3 than there are Greek residents and then we're done for !
I hope that you don't really feel as alone and terrified as the scream suggests...for me, that's what the forum should be preventing.
I was in the same dilemma prior to starting NDT, so when GP gave me prescription for Levo, I asked if they would monitor my bloods with me being on NDT.
GP said as I was his patient, he would look after me and test my bloods. Had he said no, I would have gone down the road of lies.
Unfortunately they leave us no choice!
I am sure a lot if people lie, you are not the only one - you have got to look after Number One
Your post has made me think about the fact I happily accept two boxes of levo each month when I'm currently only using one. I'm storing the spares so I'm ready for the apocalypse (or for an endo withdrawing my treatment, as currently on the cards), so hadn't thought it was an issue...
I understand (and applaud!) your ethical concerns, but it seems to me that your wellbeing is the most important thing here. If telling your GP might lead to real issues for you, perhaps taking the 28p box of tablets each month is not too bad a thing to do.
Have you ever tentatively broached the subject of self-treatment? If not, you could always tread lightly as if it is still hypothetical and see what the reaction is. Or is there any chance you can change your gp and go straight in with the news that you're self-treating? It sounds like you'll never be able to get on an even footing with this one.
As wonderful as it is to have a health system that is so comprehensive and far-reaching, there does seem to be this culture of intimidation which can be so destructive to what should be a relationship built on trust and a mutual desire for the best outcome.
Guilty of what SR - looking after yourself and wanting to be well?
I was recently outed (taking NDT) after I ended up in A & E with BP of 256 - thankfully no after effects! . My GP didn't seem to find NDT a problem, or didn't say so, and I've just had full thyroid blood tests, etc for the first time ever !
I found the best approach with my GP was to come clean and explain in a tone that smacked of empathy that I realised this was a difficult situation for him because the medical knowledge was not yet up with the patient experience as regards hypoism and that eventually it will catch up but in the meantime we were in a bit of a limbo situation because the thyroxine wasn't working and I'd decided to treat myself.
He was polite at first but I could tell he was probably just patronising me a little thinking I'd be back. Now, a couple of years later, he is really helpful and always willing to do any tests I ask for and makes careful notes about what I have to say. This experience, actually does increase my empathy for the GPs. Its not their fault the hypo training is lacking. I feel in our own small way if we can use the right approach we may gradually be able to make changes from within, after all, I bet my GP realises that I haven't been to see him as much in the last few years and has had discussions with other doctors about my approach.
Thank you all for your lovely replies, I'll read them properly later - there's a lot to consider.
Thanks for the reassurance too, I know I'm not the only one with this dilemma. I know 28p isn't much, a penny a day, but it just doesn't feel right - although I would probably try Levo again at some point, but I'm taking 2 grains NDT more than 100mcg Levo.
Our pharmacist is at the surgery - so 'non-compliance' could easily be checked.
I may go a few months not asking for the prescription & see what happens although a check up & blood test is overdue - if they tested FT3 the result may prove interesting.
I haven't broached the subject of natural alternatives or self-treating, actually I'm avoiding going to the GP at all (well, I fell OK!) - I did say I would prefer not to take any medicine at all (who wouldn't!) but as it was a hormone, that's different.
I avoid most things, I find words just fail me when I try to say what I mean & tend to just nod so I can go home!
You might think that non-compliance could easily be checked - but actually data protection laws might mean that the two sides are not allowed to communicate that type of information. I'd be interested to know if that is the case - or not.
Further, you should be able to get a paper prescription and get it dispensed wherever you like - including one of the many on-line pharmacies in the UK.
Be brave. It;s your body and it sounds as if you have found something that helps. I had a consultant endo nearly throw me out last year because I corrected hyperthyroidism without his drugs. But as he had said the 'side effect 'of the drugs was a wiped out immune system I didnt fancy it! He didnt think it was possible to do it with nutrition and wasn't at all interested in what I had done.
It's difficult. We were all taught to revere authority, and especially MDs, who (it was assumed) were always right. After watching an MD screw-up my daughter's birth, giving her cerebral palsy; and after a series of MDs never diagnosed my celiac, I now know that respect is not warranted, and every thing an MD says is to be double-checked. Besides, you already know that MDs are merely mouthpieces for BigPharma, right?
Try to smile while you tell the doctor that NDT fixed you. Tell him that levo doesn't work for many patients, and ask him why he does not know that. If he can't accept what you tell him, then don't support his closed mind by going back to him for anything else.
Sorry if I sounded like a scaremonger, that wasn't my intention. I'm just a worry-wart and care about everyone and didn't want anyone getting into trouble.
I'm also disgusted that the cost of a prescription next to the cost of thyroxin is ridiculous thank goodness we get it free because I for one would begrudge every penny it didn't cost to make and goes straight to the pharmacy. I just hope the Pharmacy doesn't get the full cost of the script from the NHS it's in enough trouble. I don't know how it works and am not asking so not hijacking this thread.
P.S. I've had 2 parking tickets and 2 speeding fines in my life so quite a villain too lol.
Last time I went to the emergency GP (it was a duty doctor, not my regular one), he said any other issues and I said well I'm hypothyroid, and he said oh, so you are on levo and I said I'm taking thyroid medication, yes. Left it there.
I've got to go back to the surgery for a medication review shortly, wish me luck!
And yes, the free scripts are for the condition, not the medication.
Thank you everyone for all of your posts! I have laughed my head off and will sleep very well tonight. I am in a similar boat. I get an NDT prescription but my dose is inadequate (because my TSH is low - of cause it's bl**dy low, I have no thyroid) so I take more than the doc says. I have a prescription that lasts about a year (4 refills) and I have been stressing over the fact that I will run out in 10 months instead of 12 months! I was scared to death that I would be busted and called non-compliant, but after reading this I feel a lot better.
I hope some MDs read this web site and learn what a pickle their stupidity is putting us all in, not to mention wasting everyone's time.
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As yet to be diagnosed but......
confused
No surprise, surgery want to reduce my levo as TSH suppressed... new results back...pls comment!
