rosetrees

The cost paid by the NHS for medicines is a national scandal (that is, of course, my personal opinion). Private purchase is almost always a fraction of the cost paid by the NHS. I wrote to my MP about just this a few weeks ago. I have a rambling reply from Lord Howe. I can scan and upload if you're interested.

puncturedbicycle in reply to rosetrees

Yes! And then I'm meant to feel like *I'm* putting strain on the NHS because they're allowing themselves to be fleeced. .

Reply (0)Report

Marz in reply to puncturedbicycle

Did you make that point to your GP - about the NHS being overcharged by the only company producing T3 ? That is where the costs should be trimmed and not at the patient level. Maybe it's all about keeping us on T4 so they can prescribe trillions of other stuff to treat only symptoms caused by undertreated thyroids....and of course the Docs earn extra too !

Think I have woken up grumpy

Reply (1)Report

puncturedbicycle in reply to Marz

Yes I did, but you can imagine what impact it made.

Reply (0)Report

tegz in reply to puncturedbicycle

Good for you No wimps allowed

Reply (0)Report

Glynisrose

GP's are just that, general practitioners, they have no in depth knowledge of most illnesses and regardless of cost of medication T3 WORKS, lets face it if you didn't need it your thyroid wouldn't make it!! Your own thyroid makes T1 T2 T3 and T4, T4 being the storage hormone and T3 being the active one. Your GP needs education!!

puncturedbicycle in reply to Glynisrose

He is all about the 'evidence' except for prescribing antidepressants in which case he says they don't work any better than placebos but he will prescribe them anyway.

Reply (0)Report

Issy

Your Endo prescribes T3 - and knows the cost to the NHS both of the drug and the extra testing) and also knows the cost to the NHS of having you unwell for the rest of your life.....

And the GP looks at the short term impact on his own budget,

puncturedbicycle in reply to Issy

Well I am such an unreliable witness; who am I to claim I'm not well?

Reply (0)Report

tegz in reply to Issy

Are they Drs -or bean counters?

Reply (0)Report

marmaris

Interesting factor, I always believed that no matter how much they upped me on T4 Levo it was only ever swimming around in the blood and not necessary doing anything ie converting. So naturally I always felt that that was why I had a supressed TSH. Now on T3 taking small steps on Tiromel. Anyone taking this I would be interested in their feed back. Was taking Cynomel felt it was stronger.

puncturedbicycle in reply to marmaris

Is Tiromel what your gp prescribes? I'm on Cynomel at the moment but I'll go with the NHS script for a while anyway to see how I feel. I can't seem to keep on top of my Cynomel orders. I'm just not organised enough to be depending on meds that have to come a long way.

Reply (0)Report

puncturedbicycle

To be fair my conversion appears to be fine, but I still responded better to t3. The doctor I consulted when I could get nothing but t4 from both gp and endo agreed that I wasn't well and prescribed t3, not because the numbers said so but because she wants me to feel better and it was worth a punt. Interesting that over a certain level you don't get any more conversion though, so perhaps that is what stopped me seeing more than a 10-20% improvement on t4 alone even though my numbers were always good on 150mcg t4.

marmaris in reply to puncturedbicycle

I bought my cynomel from Mexico myself, my partner got me Tiromel from Turkey no prescription needed. Still not feeling right, fed up with it all and frustrated.

Reply (0)Report

puncturedbicycle in reply to marmaris

I felt GREAT for two months and then suddenly went back to square one - tired, fuzzy head, not wanting to go out - so I feel your pain. Would you go back to Cynomel and see if there's an improvement?

It made a huge difference to me to go from 10 mcg t3 to 20 - I went from feeling okay/a bit better to feeling definitely stronger with better stamina (not necessarily bursting with energy, but able to keep up and able to exercise again). What are you numbers like? Is there room to add a bit more t3?

Right now I'm reducing t4 and adding in more t3 to see if that helps.

Reply (0)Report

marmaris in reply to puncturedbicycle

Hello puncturedbicycle felt good on cynomel until went to high on 50mcgs think it was more the fact that I took it in two doses instead of 4. Not feeling too good on Tiromel taking one 25mcgs four times a day. Feel it is a lot weaker. Feeling tired in the day again. Don't know what to do my partner got me 10 boxes from Turkey and very cheap. Stuck in a rut, trying to continue to see if any better will try and up a bit. So fed up of it all, also having a lot of bowel problems bloating (like pregnant etc), no being able to relieve symptoms tired and run down. So fed up with it all.

Reply (0)Report

puncturedbicycle in reply to marmaris

If by bowel problems you mean constipation and by bloating you mean oedema, those are my two classic symptoms of being undermedicated and the first things to go when I went on even a small dose of t3. When I had my last 'relapse' (ie when I stopped feeling good) my first clue that it wasn't just me feeling a bit rubbish was constipation. (Confusingly my heartbeat was also a bit rapid so I wondered if I had gone a bit hyper, but it seems like this is probably a hypo symptom for me.)

Rereading that I see you've gone from 50 to 25 - ? If you went a little high on 50 but you were feeling pretty good up until becoming hyper, maybe you've just overcompensated a little. You might do better on 30/35/40ish - ? But of course I say that as a punter on t3, not a doctor.

Reply (0)Report

marmaris in reply to puncturedbicycle

Yes I am aiming to work upto that thanks punturedbicycle.

Reply (0)Report

puncturedbicycle in reply to marmaris

Yes, sure. You could reduce slowly instead of dropping right down and grading up again, which could leave you less vulnerable to feeling unwell..

The good (?) thing about these symptoms are that you know you're onto something when they start to get better. When my bloating and bowels resolved it was like a miracle. I hope you feel a lot better very soon. x.

Reply (0)Report

marmaris in reply to puncturedbicycle

I am actually having some bloods done this week the doctor said he would test for gluten intolerance, IBS, Coeliac disease etc and thyroid count also. I hope all will be solved.

Reply (0)Report

Glynisrose

Your doctor gets a bonus for prescribing anti-depressants (still!!) AND when he prescribes statins!!

puncturedbicycle in reply to Glynisrose

I'm a little torn around the issue of anti-depressants, as it used to be a chore to get them to prescribe them when you needed them, but now it seems to have gone in exactly the opposite direction.

Reply (0)Report