I am agonising over how to deal with my hypothyroidism. My tests (previously posted here) show that I am hypo but not enough for the NHS to treat. I need to do something because of my fatigue and my weight is increasing. Even if my GP would agree to give me levo I am not sure that I want levo, nor that I want my GP or an endo to be in control of my treatment, given some of the experiences of people here.
So I just ordered Thiroyd, but now I'm worrying that if I become dependent on Thiroyd outside of the medical system then what happens if I need other drugs that conflict with it? What happens if I have a stay in hospital and they won't give me my Thiroyd? What happens when I get older if I have to go into a care home? No Thyroid dispensed there I am sure.
So I'd like to know how others have dealt with this situation? Do you go and tell your GP? Do you go and get the thyroid tests first even if you know you'll be told you are normal and you'll be sent away? I really don't want to be lying to my doctors for the rest of my life, especially if that might have negative consequences for my future treatment, but what might be the consequences of disclosure? Quite honestly I'm rather scared of the whole NHS machine.
Thanks
June
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June25
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If I go into a care home in no way will I accept levothyroxine. I shall get a lawyer to write up something to prevent being given anything else other than what I take now and the dose and if I have dementia for instance I will want a water-tight clause for my meds.
I buy my meds a year in advance and lawyer can write to Care Home that in no-way can they have permission to change my thyroid hormones. I have adult children and in no-way would they let anyone interfere with my preferred hormones or dose.
They've had visual witness of the dire straits I was in when undiagnosed and when on levo.
We are doing nothing illegal by buying our own medications and it is due to the fact of the inability of the BTA and others, who really don't appear to care that patients remain unwell, incapable of work, etc.
Just let them all be struck with hypo and be denied hormones of choice which would alleviate all clinical symptoms.
Just tell your doctor what you are taking - it's not illegal to buy prescription meds for your own use and if it makes you well, there's no argument.
" it's not illegal to buy prescription meds for your own use "
That's reassuring to know because many NHS staff behave as though it is. I've encountered an incredibly judgmental attitude from them before for drugs which were not on the controlled substance list but prescription-only in the UK. So what is the illegal thing? Is it to sell prescription drugs in the UK without a prescription? Is it then seller who commits a crime but not the buyer? Do you have a link which provides more clarification on this?
I think you are absolutely right to get it made watertight about what happens if you go into a care home. Luckily you have children who will see that your wishes are enforced, which I don't. My lawyer is my power of attorney so I'll now think about giving him instruction concerning this in due course.
False Statements have been made by the pharmaceuitical companies about NDT as it was first introduced in 1892 and didn't need a licence.
When levo was made by the pharmaceuitcal companies (in the USA I believe) false statements were made about the inconsistency of NDT. I didn't know till today that levo was developed by 2 scientists in the Uk in 1927 so I suppose it took quite a few years before it was worldwide.
I believe it is because it is a replacement hormone and assume that if it is taken by people who aren't hypothyroid they might get very unpleasant effects. Also if we have 'extra pack' and give it to someone who isn't hypo and they have an adverse affect we, then, might be taken to court.
If we are hypo and take levo which reduces some of the weight gathered when unmedicated or undermedicated, some non-hypo might think it's a quick way to lose weight by taking levo but it is not advisable. I think bodybuilders use T3 to build mucles - again that's not the purpose of replacing T3 (liothyroinine)
The assumption being that if the doc didn't see fit to prescribe it then we must be misusing it and should be seen as the miscreants we are. Hard to get past that arrogance. That some people do misuse it doesn't help our cause either.
Oh well, somebody once said to me that I might as well get angry about the weather as about the state of the medical establishment for all the good it will do me. It's just too big a thing to take on. So I'll find another way and give my adrenals a break from the stress
Thanks for that shaws. Unfortunately I am not unfamiliar with the dirty tricks of Big Pharma and the ensuing trail of corruption and/or ignorance. Who needs it. So I am going to keep quiet about my use of Thiroyd unless a good reason comes up for me to divulge it. Looked at in the cold light of day, it's really a no brainer.
If you want to be in control of the medication and dose you take there is no need to discuss with your GP at all if you order your own thyroid tests to check levels unless, and until, you are treated for other conditions. I self-medicated for six months in between consultations before telling my endo as there didn't seem any point in disclosing it until I was certain it was helpful.
As far as I know there aren't any drugs which you can't take when you are taking thyroid meds but there may be interactions so it is recommended you leave 2-4 hours between thyroid meds and other medications and supplements. You can always Google the name of a medication you are prescribed and see whether it interacts with Levothyroxine.
If you go into hospital take Thiroyd with you but don't hand it over to nurses to dispense. I am prescribed the T4+T3 I take but I wouldn't hand it over as I would want to ensure I take it at the times I'm used to taking it and away from food and drink and other meds. It's very unlikely a doctor, nurse or care home worker will give a patient an unlicensed and unprescribed drug but if your thyroid levels warrant it you will be prescribed Levothyroxine.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
I am always grateful for your advice. Good to know that there is no big drug interaction issue that might rear its ugly head. Hopefully I won't have to go into hospital or any place where I won't be in control of my Thiroyd supply, but will bear your advice in mind.
Thanks everybody for your opinion and advice. I find it helpful just to put the question out rather than have it rattling around my head ad nauseum. Somehow it makes me feel a bit more able to handle what might come, knowing you've been through it too.
I think you've put your finger on some of the worries if self-medicating. I had dental surgery last year, and was asked over and over what medication I was currently taking. At that time I was taking T4 +T3, adrenal support, melatonin, and a load of vitamins. The melatonin got a lot of sniffs, as apparently it can't be sold in this country. I hadn't even realised and it was originally recommended by my GP in the first place!
SoI do rather dread a similar round of questions now I'm self medicating on NDT, or an extended stay in hospital. But I've also met a handful of doctors who hadn't even heard of T3, so I doubt non-specialists will have heard of NDT. At the same time, last time I was questioned, none of these people cared that my thyroid condition was completely unmanaged, even though that's exactly the kind of thing they should have been worried about. So they were more concerned with ticking boxes than with actually taking care of my health.
I share your dread about the rounds of questions. I also had dental problems just last year. Nobody actually investigated what was going on, they just wanted to hand me off to the dental hospital. I think it is all about covering their own back sides, not about helping the patient. Once I realised that - that nobody except me had my own best interests at heart - it made it easier to go my own way.
I think a lot of doctoring is micromanaged these days. There are set procedures and doctors may be scared of not towing the party line in case they will be hauled up for incompetence and lose their licence. The UK is one of the worst countries for this.
It's a bad situation and getting worse. Maybe we who have realised that we can no longer trust our medical carers are the lucky ones because at least we know to be on guard for what they might do that would be injurious to our health.
Your doctors are not just trying to be difficult, they genuinely want to help and give you the right treatment according to the best evidence. But the "evidence" is just about what happens on average so docs should be aware that individuals may have different responses.
I think you should discuss your own experience with your doctors, explaining that you have tried the treatment and feel much better, and unless it's downright dangerous they should be happy to continue with it (maybe after checking your blood while on the treatment). If not, ask for a second opinion (or a third...)
Many thanks for your reply. In principle it sounds good but I have reservations about how it would work in practice. There are hardly any doctors who will prescribe NDT, so finding one is not a trivial task. Some people have had to travel a long way to find one and that one is not likely to be NHS. So supposing that I could obtain a private prescription for NDT from a doctor in, say, Belgium or Dublin, I can't see that cutting much ice with my local NHS GP. I'd like to be wrong about this, but do I want to go to go through that much effort to find out? That's a question I'll keep under consideration for now.
NDT is probably not an "approved" medicine in your area so your GPs may not be able to give you an NHS prescription. But if you tell them you're happy to get it yourself (from a reputable supplier) they should be OK with that.
It's just important they know what you are taking in case of interaction with other meds.
Yes, as long as it's not abnormally low (less than 0.5) when you are on your treatment.
The problem is that the "normal range" is so wide that people can be clinically hypothyroid but still have a TSH within this range.
If the treatment helps it means you probably are hypothyroid (without it) but it could possibly be just a "placebo effect". It is difficult to tell without trying a "dummy" pill (without being told) to see if this works as well. In my view, if you find it helpful and it is not doing any harm, you may continue with it.
"It's just important they know what you are taking in case of interaction with other meds."
I do agree with this statement and that's my dilemma. Well, if push comes to shove maybe I will reveal my supplement use and hope for the best. But until that time comes I'd rather not.
I have a friend who lives in another part of the country and she can't understand my lack of trust in my doctor. We usually see eye to eye on the big issues and we've come to the conclusion that the medical services vary widely according to location. She's very satisfied with hers. You sound like her, like you haven't lost trust in your doctor. But a lot of people here sound more like me, and express that they have been let down by their doctor. Postcode lottery?
Hi Jonathan. I'm late to this post so apologies. I just wanted to say that after visiting my GP several times, taking my husband along too, explaining how terrible I felt on Levo, he actually told me that if I ordered my own NDT he would not support me and would not monitor my bloods etc. So I totally disagree that if I showed him how wonderful I now feel on NDT that he would look after me. I have had a total thyroidectomy and had this conversation in November. Starting taking NDT beginning of December and haven't heard from him since. He'd put me on statins for very high cholesterol but again not heard anything for 7 months. I have to pay to have blood tests privately. So, with respect to you, I don't think our GPs do understand and keep monitoring us when we "go it alone" thru no fault of our own.
Hi Karbon and thanks for chiming in. It is stories like yours that have made me reluctant to even put myself through the possible stress of going to my GP.
I think I just got a bit annoyed that someone thinks doctors are understanding and want to help, even when their so called hands are tied. Not all doctors do.
It's the fact that we have to deal with them when, sometimes, we're at our lowest ebb and feeling poorly, and before NDT, brain fogged too.
I wonder, if GPs were surveyed by the powers that be as to how many of their patients still report hypo symptoms whilst on Levothyroxine, would someone twig that maybe, just maybe, they're not treating us properly.
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