Evidence for meeting with Lord Hunt

[lynmynott]

We are gathering evidence of what is happening with CCGs etc. in readiness for our meeting with Lord Hunt on 19th July.

If you have a letter from your GP, Endo, Hospital or CCG stating that you can't have T3 or you have had it stopped please let us have a copy, especially if it states why you can't have it.

If this has been verbal, please ask for it in writing and send us a copy of the letter.

Please also let us have permission to share with other thyroid support groups that are working with us and other organisations we need to share with for our #T3Campaign.

This is really important for our campaign so please do help us. Send your copy documents to me (Lyn Mynott, CEO, Thyroid UK) at [e-mail]

[crimple]

Do Hope this warm weather doesn't stop people sending info to you. I am finding it difficult to motivate myself, but at least you have the letter I received from my CCG

[lynmynott Partner Thyroid UK in reply to crimple]

I'm getting a few come in but not many yet.

[penny]

Hi Lyn, I’ve just sent a copy of my letter from my GP stopping my T3, dated 2013. In 2006/07 my T3 had been tested at 0.03 and 0.01 respectively - obviously not hypo. then! I hope that this helps.

[lynmynott Partner Thyroid UK in reply to penny]

Thanks Penny. Not sure I've got the letter but it may be under a different name?

[penny in reply to lynmynott]

Yes, Lyn, in my married name. I’ll PM you.

[ShinyB]

Sorry I can't help. My endo seems to be a shrewd for not putting anything in writing about T3. Somewhere I have a recording of a consultation where she said 'they' don't agree with T3. Not sure that would be any use in the context, but if it would let me know and I'll search around for it.

[lynmynott Partner Thyroid UK in reply to ShinyB]

Thanks ShinyB but we can't use recordings. Shame though

[ShinyB in reply to lynmynott]

Lyn! I've found something in writing! Dec 2017 "Please note, I discussed T3 replacement in a patient and the above results. Our colleagues in the department do not support or practice giving T3 replacement as part of therapy. Therefore, I am unable to provide you with T3 replacement."

Do you want a photocopied paper in the post, or I can email a scan of it to you?

[lynmynott Partner Thyroid UK in reply to ShinyB]

Hi ShinyB, please send a scanned copy! Running out of time now!

[ShinyB in reply to lynmynott]

Sent!

[waveylines]

Hi Lynn,

Hope the meeting goes well.

My ndt meds did get questioned & I had to be referred back to endocrinlogy for the endocrinologist to confirm continuation of treatment on ndt that Ive been on for the last 10years. This was confirmed, letter sent by endo after seeing me & to date my treatment has continued. However it does seem a waste of scarce resources to be forced to have this rechecked as I have been stable on the same dose of ndt for years!

[lynmynott Partner Thyroid UK in reply to waveylines]

Thanks! There are a lot of us going to the meeting now and I must say, I'm a little concerned about what the BTF CEO's are going to come up with. They are not interested in signing any letters with the rest of the groups to people like PrescQIPP...

[rosserk]

Not sure this is appropriate, apologies in advance, but there could be thousands more people who would benefit from T3 but those figures will never be known because most Doctors refuse to test for T3. My doctor tests only TSH, T4 if I’m lucky. The second a persons TSH is back in the ‘normal’ range they are refused an increase in their medication or in most cases Doctors lower their dose.

In my case my Doctor insisted I was sufficiently medicated on 25 mcg of Levothyroxine even though all my original symptoms remained he vehemently refused me an increase, even though I was so ill I was convinced I was dying! It was only when I went to a second Doctor at the practice that I persuaded her to increase my dose based on my clinical symptoms. We will never know if people would benefit from T3 when we can’t even get appropriate tests. I really hope your campaign succeeds in Doctors becoming more informed and changes in testing and prescribing appropriate medication is realised, good luck and well done 💐💐

[lynmynott Partner Thyroid UK in reply to rosserk]

I completely agree with you. We are trying to change this too but often, we have to focus on one thing at a time or it all gets watered down at meetings etc.

[rosserk in reply to lynmynott]

Thanks for taking time to reply. It’s all part and parcel of the same disgraceful treatment metered out to thyroid patients. I totally understand the need to tackle one thing at a time but the powers that be should be hanging their heads in shame at the suffering they’ve caused.

I’ve seen three different Doctors in my Surgery and the lack of knowledge in thyroid disorders is astounding. Are there any plans underway to increase Doctors understanding and better educate them in the treatment of thyroid disorders?

[lynmynott Partner Thyroid UK in reply to rosserk]

When ITT and TUK proposed some criteria for patients needing T3 we suggested patients should see a thyroid specialist endocrinologist rather than a diabetic specialist. I would love to campaign to get better training for doctors. I'll bring it up at the meeting.

[rosserk in reply to lynmynott]

Brilliant! That would be fantastic! It’s doctors lack of knowledge that has pushed patient to seek self treatment. Secretly messaging people online for safe places to buy T3 and T4 is a scandal that should be brought to the attention of the highest ranks of the powers that be. No one should have to scour the internet looking for drugs to buy online from an unknown supplier just so they can get through the day and have some quality of life. I’m sure there aren’t many other diseases were lack of treatment necessitates this dangerous practice.

I’m currently prescribed 100 mcg of T4 but I take 175 mcg. I haven’t told my doctor, I’m self medicating like thousands of other people purely because my doctor refused to increase my dose! Had I not taken matters into my own hands I would still be bed ridden and suicidal... I’m one of the lucky people because I think once I achieve the correct dose T4 will work for me. However it would still help if my Doctor understood the need to test T4 and T3 as well as TSH and could interrupt those results correctly and prescribe the correct dose, so I didn’t have to lie and cheat!

I really hope you achieve all you’ve set out to achieve, many thanks for all your hard work and good luck! You’ll need it! 💐💐

[Marz]

Like any condition/problem, knowing the root cause can usually produce a solution. Sort out Big Pharma - reduce the price of T3 - and normality will return. Job done. Why is it so b***** difficult to reduce the price charged to the NHS. Supermarkets screw their suppliers into the ground on prices - it is called business ... Too many snouts in the trough ... 😎

[lynmynott Partner Thyroid UK in reply to Marz]

It's the way the drug tariff works that is at fault. It needs to be changed...

[Marz in reply to lynmynott]

... and fast ! Next time you buy potatoes in Waitrose - think of the poor farmer who received a pittance for his efforts. Why should it be different for Big Pharma ?

[DippyDame]

I cannot comment on T3 being stopped but what I can say is that being offered T3 in the first instance was a non starter! My GP has her hands tied behind her back, FT3 tests are almost impossible to have done and she told me I am the first patient she has encountered who takes T3. She's an experienced and excellent doctor, but woefully lacking in thyroid knowledge,... which to her great credit she admits. She supports my self med/testing approach but can only look on from the sidelines and do TSH and T4 tests.

No need to add the details of my thyroid journey because it echoes those of so many here!

I agree with rosserk about the abysmally poor level of thyroid treatment and how we are forced to manage our own health in potentially dangerous ways. Yet, we here are the lucky ones - many must fall through the net with so little NHS support. The NHS is wonderful but those with the power to change things, who ignore the plight of thyroid patients, are something else!

I just want to wish you the very best of luck and say a massive thank you for all you do because I can only imagine the state I would now be in without you and yours.

Rant over!!

Best...

DD