Interesting Endo Apt.

[JillOliver]

Just thought worth mentioning.... I've just come back from an appointment with my endocrinologist (NHS, not private) and to my surprise, he admits defeat with treating me with T4 alone. I thought I was going to have an awkward time of it trying to get him to listen to me, but he was perfectly nice I was originally referred to see him two years ago as I had started taking T3 alongside the T4 and appeared to have a good reaction to it. But at the first apt. he said definitely no to letting me have T3 on the NHS, as it was so expensive and isn't the recommended treatment. But after two years of trying to just get me on a dose of T4 only that suits me, he admits defeat, as I have all the same symptoms again now as I did when I was first diagnosed with an underactive thyroid, weight gain, in fact I have gained over a stone in weight since going to see him, tiredness, mental fog etc and can't lose a pound of weight now even when trying and I am a very active person, tiredness allowing... Currently on 150 mcg and latest blood test showed that It needed lowering again down to 125mcg, which I refuse to do. Bit annoyed with myself, as I completely forgot to ask him for my actual results, which would have been useful!

So he is writing to my GP to get her to refer me to go see another endo, in a town up the road from where I live, who 'may' be willing to try me on T4/T3 treatment. My endo's words were "go and see one of my colleagues who aren't so against using T3 to treat an underactive thyroid" Quite why he is so against it is beyond me. I assume that one of his colleagues will also be from the NHS... Oh and then, even if my GP agrees and refers me to see this other endo and if he says yes to the T3 then my GP 'may' still not prescribe it as it's too expensive! Its all fun and games isn't it! Quite how they get to play God over someones quality of life is amazing!

I had only just bought some NDT too, which I took with me, as I was going to ask him to 'advise' me on treating myself with that and he said under no circumstances was I to take it, as a pigs thyroid is completely different to a humans. He said if anything, he would rather I take the T3, which he still doesn't agree with as being the treatment of choice for an underactive thyroid.

However, he was very pleasant and even said that over the last two years since I have been seeing him 'things' had started to change in the treatment of hypothyroidism and would continue to change in the coming years, but he wouldn't elaborate any further.

My one concern with purchasing T3 or NDT myself, is that what if I get on really well with whatever I have chosen to buy and then the supply chain is stopped for whatever reason, or I simply can't afford to purchase it anymore as I hurtle towards retirement...!

So onto my next journey with this Gawwwwd awful disease!

Thanks,

JillO

[shaws Administrator]

I wonder if his other 'colleagues' would prescribe T3 as there seems to be a 'new' blanket refusal by the BTA to refuse T3 to patients who were well on it. Due of course to its ridiculous cost which has given them a perfect excuse as T3 could be prescribed on a named-patient basis for cheaper alternatives but will not as they may lose their licence.

Also BTA have made False Statements about NDT, which has been in use in various forms since 1892. A Scientist/doctor sent the following to the BTA and RCoP and it was ignored, despite three yearly requests for comments. Dr Lowe has now died. So please copy and send to your Consultant. Who believes in fairy-tales nowadays? The ones who should be expert in all forms of thyroid hormone replacements and more interested in their patients recovering than a dot on a piece of paper.

thyroidscience.com/Criticis...

[serenfach in reply to shaws]

Please could you check the link as it does not work for me. Thanks. I may need some evidence for a GP appointment.

[shaws Administrator in reply to serenfach]

Should work now This may be informative too for the future:

web.archive.org/web/2010112...

This is also Dr Lowe's CV. He died through an accident and is greatly missed. He was also an Adviser to TUK/

[serenfach in reply to shaws]

Thanks shaws.

[Clutter]

JillOliver,

Plenty of people who have had T3 or NDT prescribed have suddenly had their prescriptions stopped and their options are to revert to Levothyroxine prescriptions or to buy T3 and NDT without prescription and self medicate. None of us can be guaranteed continuity of supply from prescribed sources or sources without prescription. If you think you won't be able to afford buying your own T3 and NDT in retirement there doesn't seem much point in buying it now if you are close to retirement.

[JillOliver in reply to Clutter]

Thanks Clutter. No not near retirement, just jumping ahead a bit, like I tend to

[SmallBlueThing]

Buying my own T3 and NDT has been much cheaper than the travel costs to see an Endo (not that my GP has acted on my suggestion that I should see one). I order what I think I'll use before the expiry date, so have some feeling of security.

[humanbean in reply to SmallBlueThing]

I use T3 after the expiry date. I would use NDT after the expiry date too, if I took it. I always freeze my meds in small quantities and take them out of the freezer in small quantities. Then I transfer them to the fridge and take out what I need once a week. I haven't noticed any obvious reduction in potency so far.

[SmallBlueThing in reply to humanbean]

Good tip.

I must regard my stock of film, baker's ammonia and reserve sourdough starter as more deserving of the space