Not posted in a while. I guess I've been trying to get on with life. This will be my 16th year trying to live with this condition and it never seems to get any easier. After many years of trials and tribulations I finally settled on taking T3 only. It would take me way too long to tell you my story but to say I've been through hell wouldn't be an exaggeration in my estimation.
Been through the myriad of doctors private and otherwise. Have been made to jump through hoops time and time again to try and obtain a replacement hormone which is the only thing that will allow me some assemblance of life, some functioning ability to be able to hold down a job and keep a roof over my head.
I found a Private GP 4 years ago who was willing to prescribe T3 Cynomel by Sanofi -aventis which happens to be the ONLY brand of T3 I can tolerate. That enabled me to get back to work after many years claiming benefits. Today she informed me she is no longer willing to prescribe...
Now that in itself didn't even come as a surprise . I knew it was coming one day and that I would find myself in the same distressed and panicked state as I have found myself so many times before. It's the way in which she (Private GP) did it.
I emailed her for a repeat prescription start of the Year. She replied the next day saying she would issue it, no problem. I breathed a sigh of relief...Following day I receive another email from her. No, she cannot give me a prescription without seeing me as it had been so long.. I thought ok, what choice do I have but to shell out money for a consultation, as long as I get prescription.
So, knowing the precarious state of affairs with 'thyroid hormone prescribing' I decided to email her first to preempt any problems. I said I would be unwilling to attend a consultation unless I was certain she was willing to keep prescribing the Cynomel for me. I receive an email back with her stating " yes of course I can do that." It's just that it had been so long since she had seen me last.
So nearly three weeks ago now, I take an hour and a half bus journey in the most horrendous weather..it was blowing a blizzard that day. I even dragged my poor daughter with me to keep me company. I saw the GP. She did mutter something about the GMC clamping down and then says she'll need to do a blood test. Again, I didn't want a damn blood test, but if it meant getting my prescription....
So, normally what happens is that she hands in the prescription to a Pharmacy down the road from her practise and they post it out to me. This has been the case for the last 4 years. After a week and a half, and receiving no call from the Pharmacy I emailed her in regards to the prescription. She ignores my email.
So I then tried emailing again this morning. I told her I was desperate as I had very little meds left , and this evening I get a reply from her. She tell me she can no longer take responsiblity for prescribing the Cynomel for me as it is a 'unlicensed medication' and the Head Pharmacist confirms this. Really? Well why has she been prescribing it for the last 4 years and why the hell did she get me to attend a consultation under false pretences leaving me completely out of pocket. I am just sickened. I don't even work full time hours, and am on the minimum wage. Oh, and a single mum!!!
So let's see..(Bus fare- £40. Taxi to+ from GP practise-£20. Fifteen min Consultation-£60. Blood test- £60. Prescription cost-£20 Total= £200 for absolutely nothing. She has the audacity to tell me she will return my £20 cheque for prescription. I paid that separately and the rest on my bank card. I want the rest!
I will now have to spend days trawling the internet, looking for Private doctors again, and then have to come up with hundreds of pounds to cover costs, because it looks like a trip to France is next. I have no medication left either. I just don't wan't to play this game any more. My heart beats heavy...When will it stop?
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JoanofArc
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A pedantic quibble arises - in case you can turn it to your advantage.
Liothyronine is a licensed medicine. It is simply that the Sanofi make is not licensed in the UK but it most certainly is licensed in France.
With suitable caution, prescribers are advised by the MHRA that unlicensed products may sometimes be supplied! Admittedly this was in the context of shortage of supply. Your situation is a special form of shortage of supply - there is of shortage of supply of a suitable make for you!
Even more ridiculous, if you got a prescription (whether NHS or private) you are allowed to take it to France to get the product dispensed. If the specified dose and the active ingredient are right, you could readily get Sanofi Cynomel. In that situation, would the doctor be fearful of having prescribed a medicine that is unlicensed in the UK?
Yet the actions are basically exactly the same - doctor places signature on piece of paper that says "25 microgram liothyronine". Patient gets Sanofi Cynomel dispensed. Only difference, travel from UK to France and back.
Sure, it is a grotesque impostion on you.
If you were being prescribed some medicine that had never, in any form, been licensed in the UK, her/their argument might make some sense. As it is, it shows one thing, doctors are being bullied and cowed and, for whatever reason, they are unable or unwilling to act against that.
I am sure you know all this - at heart, I am just ranting on your behalf.
Thank you for your reply and ranting on my behalf! It seems the private route is now very much resembling the NHS. I think my only option now is to search for a Private doctor in France. If anyone has any suggestions please PM me.
You have almost certainly considered the following so apologies for making an unhelpful comment. Is it worth trying, one more time, another brand of T3? Many do very well on unipharma T3 as you know. In the 4 years or more that you have been on the French brand you *may* have become less sensitive to whatever it was that disturbed previously. I suppose it is even possible that other makes *may* have changed constituents ( fillers) in the course of 4 years?
If you found you were able to tolerate Unipharma ordering from Greece will be cheaper, far cheaper than paying for a private doc in France.
Thank you for your comment Catrich. It's not unhelpful. I appreciate any suggestions at all!!!
Unfortunately though, I have just tried the Unipharma T3 again. I found a pack still within date in my cupboard, have been taking it for the last few days and feel quite frankly awful. I do realise though, that at this stage I may well have to settle for feeling worse on another brand. The fight just gets too difficult..
I wonder why it makes you feel so terrible? We assume ingredients/fillers but could it be strength? I have certainly read people here reporting their experiences viz strength/potency of one brand over another. And if you could compare the fillers of both you may be able to narrow the problem down. I assume you have the inserts for both brands?
The often-ignored issue of impurities in the active ingredient (or breakdown products, etc. which appear during or after manufacture) could be behind many problems.
helvella I am beginning to think this way, as 3 weeks on Wockhardt has not alleviated the 'glue' coming through my skin. My temperature has gone up to a normal 37.2 and will find out in another 3 weeks if my bloods have risen along with it. Wockhardt contains Levothyroxine Sodium as against ANHYDROUS Levothyroxine Sodium like most of the other makes, but it does still contain Magnesium Stearate, which does not have particularly good reports. I have been putting it off, but must really read the MHRA Levothyroxine Report. It is the thought of ploughing through 38 pages that puts me off. Will it be worth it, I wonder.
Well, it could be any number of things. Having looked at the inlay slip for Unipharma there are a few dubious contenders including Lactose monohydrate, Magnesium stearate, Talc silicified, Colloidal Silicon dioxide, Egg yellow lake art, starch maize and more... Both myself and my daughter are highly allergic. My daughter has severe nut allergy. Whilst I don't have that , I react to many different foodstuffs.
Yes, thank you RedApple, another member mentioned that. I know I did try it years ago and discontinued it in favour of French Cynomel, but in the meantime, in the absence of having anything else I am probably going to try it again!
Having sent a strongly worded email to private GP, I receive a reply explaining the reason she could no longer prescribe the 'unlicensed' Cynomel for me was because my T3 blood result was in the normal range!!!
Don't you just hate it when they fob you off with that guff? I actually don't have a copy of my blood results yet. I also had TSH and FT4 done but I'm told my T3 result was 1.1 !!! So let's see? I'm on T3 ONLY thyroid replacement treatment. I would damn well expect my T3 level to be within the normal range ON treatment. That is the whole point of treatment. Moreover the laboratory ref range I have for Total triiodothyronine is 1.1 - 2.6 (nmol/L) so my level is bottom of the range ON treatment. I am clearly under replaced and it goes a long way in explaining my continuous bouts of fatigue. I'ts all so ridiculous isn't it?
I would have respected her more had she just told me she could no longer prescribe without explanation!
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