A little hope for us?

[Tiredofthis77]

Patients requiring daily tablets for conditions like thyroid problems are being freed from a lifetime of medication by new NHS Grampian technology. pressandjournal.co.uk/fp/li...

[Alanna012]

Interesting, is it mostly good for people with tumours though?

[Tiredofthis77 in reply to Alanna012]

It seems to be but I'm still seeing a positive in the progress

[Lalatoot]

Sorry to burst the hope bubble but no! The technology is the latest word in scanners. It leads to better diagnosis and outcomes for pituitary tumours and the like. But it won't restart or regrow a thyroid damaged by hashis or replace the faulty gene hampering conversion. We are still going to need lifelong replacement hormones in those cases Please don't all rush to move to the NE of Scotland on the basis of this article 🤩. I can assure you from personal experience that the treatment for thyroid conditions here is of the same quality as you get elsewhere .

[Alanna012 in reply to Lalatoot]

Is it so bad in Scotland too? Honestly can no one take a different approach elsewhere in the UK?

[Lalatoot in reply to Alanna012]

Alanna, in theory we have the right to be prescribed T3 liothyronine if there is a clinical need for it, which is not the case in England. However, proving the clinical need is still problematic for many patients. So it can be almost as difficult to get it here too.

I had RAI in Scotland. I was left too long after the treatment and my ft4 was 4 (10 - 25) by the time my hormones were tested. For 4 years my tsh was kept at top of range and my ft4 low in range. Only once I learnt enough to guide my treatment (= arguing the toss) did I get combo and doses that suit me.

[Titaniumfox]

Sadly this article would apply to only a tiny fraction of thyroid patients who have a pituitary tumour. The majority of us will still have to take our thyroid hormone daily.

[tattybogle]

.. erm . Is it just me ?

so ....a TSH (oma) on the pituitary will produce too much TSH ,regardless of T4/T3 levels .

right ?

So patients TFT's will show disproportionately high TSH with high end/ over range T4/T3 levels ?

So if the NHS had spent £2.50 on a fT4 /fT3 test, and the GP had looked at the whole picture with some understanding , instead if probably just seeing a slightly over range TSH.... then TSH oma would be an obvious thing to look for ..... Why did they need a radioactive injection made in their million dollar particle accelerator to tell them a TSHoma was the likely culprit . and to go look for it.

"and I’m free from all my medication and injections, which had a lot of side effects.".... what medications i wonder .. and what for.

[Lalatoot in reply to tattybogle]

Tatty, we are simple beings up here...easily bamboozled by life never mind the latest technology. If a man in a white coat has a big expensive machine that whirrs and pings, I'm going to believe what he tells me and think that him and his machine are the greatest things since sliced bread, even though a wee test at £2.50 could have told me the same thing. Why I'd be so happy with him and his machine that I might even write to the local wee bitty newspaper about it saying how fab it is.

[tattybogle in reply to Lalatoot]

Snort

.....

[helvella Administrator Thyroid UK in reply to tattybogle]

The article was written by someone who didn't understand! I suspect they took some notes then looked up a few things on the internet. And confused themselves and us.

They need to know where the TSHoma is with incredible positional accuracy so that they can go on to phase 2. Blatting it with a proton beam (or whatever). That destroys just enough - the actual tumour and not the rest of the pituitary - to return "normal" function - they hope.

The scan on its own does nothing to help. But is a necessary precursor.

Lalatoot

[Lalatoot in reply to helvella]

Thanks Helvella. As I said to Tatty we are easily bamboozled up here. The wee bitty local paper wouldn't have a clue. Getting a splinter out of a finger would be more the typical sort of news story.

[Hotentre]

I for one just wish the doctors would do the testing better.I feel most do not understand thyriod testing and reading the results .I live in Scotland and do not find they have much of a clue .

Had to work over seas and they had a better understanding there with testing done regularly.

I also was guided about my symptoms and how I may be effected with thyriod .This has helped me in understanding why I feel the way I do some days .

I just wish the Dr. Would understand the effect thyriod has on one and not make one feel ...oh it is just thyriod.

I have suffered all my life with it and

Just wish there had been more help along the way .

I will not be rushing off for their so called latest cure.I am just hoping for Doctors to use and help we already have would be a good move forward in my book.