been hypothyroid for many years and have this year been finally diagnosed. I was on 75T4 and 10T3 which didn't work as well as my previous self medicating 37T3 only, so I persuaded my GP to increase to 15T3. After six weeks ( and I was still not feeling ok ) my bloods looked like this: TSH 0.41 ( 0.25-4.0) FT4 11.0 ( 12.0-22.0) FT3 4.3 (3.1-6.8)
I had tried every variation of timing of doses.
Even my GP can now see that something is not "normal" and has agreed to increase to 20T3 ( which I have to say seems to have made a massive difference, but I have a ROTTEN cold so diff to say really ) The 20T3 is costing NHS £250 per month and GP is having to argue with the financial boffins in his practice.
Any comments welcome. Thank you.
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AndiRiley
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AndiRiley I can understand how you feel as when I was first prescribed T3 added to my prescription by my Endo and took the repeat to my GP the first thing he remarked on was how expensive it was ,which being the sensitive person that I am immediately made me feel bad............"You can have it but I didn't realise how expensive it was!" My prescription was for 75 mcgs T4 + 10 mcgs T3 which isn't a lot in terms of dosage. It made me wonder what he would say if I needed more!!
It was then that I asked my Endo if he would monitor me on Armour Thyroid which he agreed to do,though can't prescribe it.I have to buy it myself but at least I know that if I need a raise in dosage I can have it. It is cheaper than £250 a month though Armour is not the cheapest NDT I know.
When you are striving to find the way to improve your health and sense of well being, you do not need a load of hassle and aggravation.You need support and consideration. Hope the cold soon clears.
Thanks Marfit74. I did tell GP that 2 grains NDT would have very similar doses at MUCH cheaper price. I may go down that route eventually. I actually have some Thiroyd already, but want to get ball park doses settled with backup of NHS before considering switching.
Thank you for that information. Can you tell me please - would my prescription still be free or would I be paying for it?
Even with my FT4 below range my GP is inclined to wait until after my next endo appointment in August. I'm a bit worried about what the outcome of that meeting might be - endo was tending to want to reduce doses below 75/10 as my TSH was slightly below range at my previous appointment in April !!!!
Your prescriptions should be free for NDT on a 'named-patient' basis but the British Thyroid Association etc don't agree that it should be prescribed and thus have made false statements.
This doctor wrote the following and despite three yearly reminders asking for a response, they ignored him completely. Dr L has now died and is a huge loss to us.
Thank you. I have read the ETA and ATA guidelines and the BTA response. All seem to have been written as if by a biased L-T4 manufacturer. Is the "tide" in the real world turning in favour of NDT and L-T3 use, or are these institutions getting their way and creating a universal monotherapy culture?
I believe, in the USA (where I think levo originated) that there was a big push to replace NDT with levo and the blood tests. Also that doctors were also rewarded with monetary incentives to prescribe levothyroxine alone and many succumbed.
Excerpt:-
Many endocrinologists talk of using the TSH and thyroid hormone levels to "fine tune" hypothyroid patients’ thyroid hormone dosages. Considering how much the hormone levels vary, however, it’s obvious that the concept of fine tuning is mistaken. For the sake of their patients’ health, endocrinologists should promptly abandon the notion. This is unlikely, though, due to financial inducements the endocrinology specialty receives from corporations that profit from doctors endlessly ordering the hormone levels to "fine tune" their patients dosages. Hopefully, though, you can use the scientific evidence to persuade your doctor to use a safer and more effective approach with you. (More on this topic).
When only NDT was available we were prescribed due to our clinical symptoms (nowadays they are unknown in the professional area). Patients were prescribed on a trial basis. I believe that the Association's Conference in the USA was funded by a pharmaceutical company.
Thank you - that link is very interesting. I knew TSH wasn't a good tool, but I didn't know about the moment to moment variations.
My endo ignores symptoms even when I present monthly averages of my criterion referenced symptom scores. My GP is however starting to take my reported symptoms into account now that I can show him step changes in monthly average symptom scores with each increase of T3 dose.
I'm glad for you and that your GP is taking note of your improving symptoms and is also improving his knowledge which might be helpful for other struggling patients. Here is another link:
Thank you. I am interested to learn that the spike in FT4 due to the ubiquitously advised single dose of L-T4 causes a prolonged suppression of TSH ( greater thatn 24 hours ). I wonder if anyone has tried split dosing L-T4 to avoid this? Benefits would include obviously higher TSH which would ( I newly know ) help with T4 - T3 conversion and also bias my blood tests to permit a higher dose without the TSH dropping out of the "immaculate range"
As I'm dosing L-T3 twice daily, I'm going to try this.
Most of the thyroid hormone replacements are made for once daily dosing i.e. with one glass of water. As levo has a long half-life there's not much of a benefit in splitting dose. A couple of extracts:-
Split tablets either by hand or splitter showed higher rate of content uniformity failures as compared to whole tablets. Tablet splitter produced more fragmentation and, hence, more content uniformity and friability failures. Chemical imaging data revealed that the distribution of levothyroxine was heterogeneous and was dependent on type of binder and the process used in the manufacture of tablets. Splitting such tablets could prove detrimental if sub- or super-potency becomes an issue.
and
Several studies have indicated that tablet splitting may result in high incidences of weight variation that may or may not be of clinical consequence depending on the drug being split (6–13). McDevitt et al. (12) found that 41% of split tablets deviated from the ideal weight by more than 10% and that 12% of pills deviated by more than 20%. Such differences can be critical with certain heart or thyroid medications with a narrow therapeutic index. In such case, splitting could bring about subpotency or superpotency issues which might cause harm to the patients.
Levothyroxine tablet is cited as one of the drug products that could be safely split to cut the cost (14). However, it is a drug recognized to have a narrow toxic to therapeutic ratio with significant clinical consequences of excessive or inadequate treatment.
There are pharmacies who are importing Armour Thyroid and other NDT brands into the UK but you have to have a prescription as you say to obtain it. This therefore means that there are people here who are successfully using it or these pharmacies wouldn't be importing it in. Are these people private patients? I feel it's time we knew a lot more.We don't need double standards here.If NDT works,it should work for anyone! It would certainly see the end of Mercury Pharma monopolising the T3 market within the NHS.
I believe it would be Private doctors mainly prescribing - it cannot be anyone else I assume - look how they penalised/prosecuted Dr Skinner and Dr Peatfield and other doctors also lost their livelihoods.
Mercury are penalising the NHS and the NHS is quite happy to do so, apparently, the Endocrinologists don't complain but will not prescribe NDT. You have probably seen this post in the past and they never did have the courtesy to respond to Dr Lowe. They don't want the truth to be known:-
considering it's been in use in various forms since 1892. Definitely a 'grandfathered' drug if ever there was and safe and successful. Mrs Clinton certainly seems to have her 'mo-jo' back
So sad to think of all that those Doctors suffered in the name of helping us.My Endo was sad when Dr.Skinner died ,telling me what a good man he was.
Yes Hilary Clinton's Mo Jo seems to be OK.......in that case " I'll have some of what she's having !!!!".......and No Shaws.....I am not seeking High Office!!!! xx
You can never tell - wonders do happen and you might headdup the BTA with a bit of luck You'll have at least 40,000 supporters up and running already from this forum.
Thanks for links and it's about time there was investigations into pricing instead of denying patients life-giving and therapeutic doses of whichever hormone suits them.
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