Thyroid UK

Is having this DIO2 gene test done my only hope to get evidence that somerset ccg will accept I need t3

I have no thyroid due to cancer and im in remission 4.5 years. Finally put on t3 to take with my thyroxine in january 2016 only for it to be stopped In april2016 due to postcode and cost

Applied for funding last year and about a month ago which both have been refused as no evidence even though I did a diary of symptoms and sleep and they said I didn't require t3 as all bloods in ranges.

My oncologist endocrinologist and dr and family have seen the improvement with much more time for more improvement with t3 but had to come off it in May 2016 so they could see my bloods but it didn't make that much difference but boy did my horrible symptoms come back being just on thyroxine We are buying t3 online but that supplier having trouble getting t3 tablets in with all the orders received

So im enquiring who had this gene tested and was your results positive or negeative. I see there a company mention on uk thyroid

I hoping and praying if I get this test it's positive so it can prove I do need t3 to Somerset ccg

Just wanted to know who had it done

A lot of money when your on benefits

[ Edited by admin to correct gene name. ]

18 Replies
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Sweetpea3,

I would check with Somerset CCG whether having the genetic impairment will make any difference to them prescribing T3 before shelling out for the DIO2 test.

Uni-Pharma T3 is in short supply but as far as I'm aware Tiromel and Grossman Cynomel are easy to get hold of.

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They closed my case now and im under a different dr as mine has left the practice

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Sweetpea33,

Yes, but it is Somerset CCG who banned prescribing T3 not your GP wasn't it? It transpires that CCGs do not have authority to tell GPs what to prescribe and what not to prescribe but that's not much use to you if your GP has left.

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I will send a letter tomorrow asking them if genic impairment would make any difference to their decision on prescribing

Thank you all for your help

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I sent an email to them clutter tonight

The French t3 is no longer available over the counter and the Greek t3 is the one having delays due to shortage

You mentioned Tiromel and Grossman Cynomel might be easy to get hold of whom can I go through to get some please

Thanks so much for your help

Off to bed as had a tiring day night

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They closed my case now

And I'm under a different dr as mine has just left the practise

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I think most people here fully understand the gene you are referring to - but it would look better if you type it as three letters followed by a number (DIO2) rather than a letter followed by three numbers when you communicate with the CCG or your doctors. Otherwise you are giving them the opportunity to dismiss the argument simply on the basis you didn't type it as they expect.

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Thank you for correcting me this is all new to me

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In their letter dated 2 August 2017 the panel reflected on the previous decision and we considered the case following a careful review and reconsideration of all correspondence received in relation to this case I am sorry to inform you the panels decision remains unchanged and funding has not been authorised for the above patient to receive

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Lipthyronine as detailed in the application documents considered was GP correspondence patient statement and diaries consultant correspondence and application form July 2016 additional information application form July 2017 GP correspondence patients correspondence copy of response from CMO's office IFR correspondence and consultant correspondence

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Funding has not been authorised by the panel on the following basis there was insufficient evidence to demonstrate your patients individual circumstances justified a deviation from the current policy as this application for funding has now been considered twice any further consideration of this case would be by an appeal panel consisting

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Consisting of members independent of the previous decisions however I need to advise you on the pill must be against the process followed by the panel in consideration of the application and not against the panels decision appeals should be made in writing clearly stating the grounds for the appeal and should be made within 28 days of the reconsideration decision of the IRF panel

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I not included all of the letter just some points

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Hi sweetpea33. I live in Somerset and the NHS refused to see me when my GP wrote requesting a referral due to need for T3. I am a poor converter t4 to T3. So I went privately to an endo. He has been brilliant and is concerned to help me. He is prepared to look at all options re medication. If you message me I can let you have his name and contact details. The first appointment costs £150. I know that is expensive but he may be able to sort out something for you.

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I had the DIO2 gene test earlier this year after receiving a letter from my gp surgery requesting me to make an appointment to discuss my t3 prescription. I guessed they were going to try to take it off me despite my blood test results having improved on t3 and I felt so much better. The gene test came back showing that I do have a problem converting t4 to t3. My gp was able to use that to allow me to continue on t3. Meanwhile I also bought some t3 online from Mexico (just in case my NHS t3 was stopped) - it took a lot of patience trying to pay for it but it arrived quickly.

I would follow the earlier advice of checking whether your local ccg will accept the DIO2 result before paying for it.

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Thank you chunipet I am awaiting Somerset ccg to reply to my email re this test I will update once a response is received

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You're welcome.

My gp just asked the endo at the local hospital to confirm I could continue with the t3. As permission came back within 24 hours I'm guessing it didn't go as far as the local ccg - I'm in the midlands. Not sure how all of this will work if t3 is deprescribed - I'm guessing we're on our own.

I really hope your ccg let you have it.

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Thank you I sent an email rather than a letter but hoping they will still action it even though my case is closed

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