DI02 testing

[glamrocks4girls]

I am thinking of taking the DI02 genetic test (as a weapon in my armoury when/if I have a battle with my GP surgery over T3 prescription) but reading the summary of the scientific paper on Thyroid UK's website see that it implies the small group of people with one or two affected genes do better on combination T4/T3 than T4 alone. Is it still worth me having the test done as I cannot tolerate any T4, only T3? Thanks for any advice/info on this topic. (I would have used the Search facility above but don't seem to be able to get it to work!)

[Marz]

healthunlocked.com/search/d...

[helvella Administrator in reply to Marz]

And for the others:

healthunlocked.com/search/d...

[glamrocks4girls in reply to Marz]

Thanks again Marz. Some useful info there.

[glamrocks4girls in reply to Marz]

Thanks again Marz - more useful info to digest.

[greygoose]

It's DIO 2, glamrocks, three letters and one number. That might have been why the search didn't work.

[glamrocks4girls in reply to greygoose]

Thanks greygoose but I did write it as three letters & a number. My issue with the Search facility is I cannot get any response from it at all whatever I write in!

[helvella Administrator in reply to glamrocks4girls]

You might well have typed it as three letters and a number in your search. But greygoose and I responded as we did on the thread because your post title and contents BOTH have Dee-Eye-Zero-Two.

[glamrocks4girls in reply to helvella]

The penny has finally dropped re the zero! But I still cannot get the Search function to work.

[Pookie50]

I had the DIO2 test last May which showed I do have a faulty gene, however my GP and local CCG do not recognise the results of this test and still refuse to prescribe Liothyronine (T3) although I was taking it successfully (with Levo) for 7 years.

I am now taking self funded NDT, WP Thyroid, and have given up on the medical profession as far as my thyroid is concerned.

[glamrocks4girls in reply to Pookie50]

It's stories like yours Pookie that I find distressing and quite honestly get quite anxious about. I can feel my heart racing at the thought of the unfairness of it all. Although I have not been refused T3 yet I have started to look for alternatives and managed to get some friends to buy me some liquid T3 (Liotir) at their local pharmacy in Italy. I haven't tried it yet because I have an issue with palpitations that I haven't yet sorted out. In this crazy world we live in they paid 10 euros for a month's supply. I read somewhere yesterday on this forum that someone had had to pay over £200 for a months supply of self funded T3 tablets at their local pharmacy - every time an amount is mentioned the price seems to go up. When I started T3 seven years ago the NHS was paying about £30. Bonkers!

[helvella Administrator in reply to glamrocks4girls]

Please do let us know more about Liotir. It is an interesting concept - particularly the use of ethanol (alcohol) as a solvent.

[glamrocks4girls in reply to helvella]

I shall certainly let you all know how I get on with it once I've stabilized the old palpitations and feel ready to try it. I'm slightly reticent as I remember someone on the forum mentioned Liotir hadn't agreed with her. Happy New Year helvella.

[Hidden]

Hi glam rocks, just to say I too cannot tolerate T4 which I've repeatedly been told is not possible. I also have PA that seems to go hand in glove with the thyroid problem. I'm sure mine is hereditary as so many relatives past and present have PA and thyroid issues. Sorry I cannot give advice but you gave me some comfort when I read your post. Happy new year to you and everyone.

[glamrocks4girls]

Hi Mabsie. Thanks for your reply. What a horrible situation for you and one I may find myself in at any time (although my endo was quite happy to accept that I was only well on T3 - I don't think he had come across any other patient like me at the time but at least he believed me). So are you self medicating? I have been on NHS T3-only for seven years now and find all the reports on this forum of refusal to prescribe T3 very worrying. Forgive me for asking but what is PA?

[Hidden in reply to glamrocks4girls]

PA is pernicious anaemia glamrocks. I've been on NHS T3 since 2001. I had a severe allergic reaction to T4 . I was diagnosed with Hashimotos way back in about 1986 . Having only recently joined this forum I'm living and learning as they say. Take care.

[glamrocks4girls in reply to Hidden]

Thanks Mabsie. I've not heard of such a bad reaction to T4 before. We are all so different; it makes trying to treat us all the same so ridiculous and quite frankly, unscientific. Happy New Year!

[heathermr]

Just to let you know that I was in a similar situation as my pituitary does not produce any TSH so I need to take T3 only. I had to shame my Endo as he had no knowledge of the effects of having no TSH and had refused me T3 medication. You do have the legal right to refuse to take T4 medication if it does not work for you and as they are legally bound to treat someone with hypothyroidism they have no choice but to give you T3. This is how I managed to get my Endo to give me a full dose of T3 on the NHS. I simply gave him a large piece of paper with the words "I REFUSE TO TAKE T4 MEDICATION", he ranted and raved for nearly 20 minutes but I just sat tight and refused to budge until he gave me the T3 treatment I needed. He has never seen me since and I would not go near such an idiot, but it was enough for my GP to be able to prescribe T3. That was well over 5 years ago and I just keep fetching the prescription although I do feel guilty that the NHS are paying such huge sums for T3 when they could import it for a fraction of the cost.

Heather

[glamrocks4girls in reply to heathermr]

Thanks very much for this bit of strategy Heather - I sincerely hope I don't have to use it. What a ridiculous situation we find ourselves in! Happy New Year.