Help Going Forward Please

[Debbie2012]

Ive spent the last week trying to compose a letter to my Endo, MSP, health board etc and feel Im getting a bit emotional.My endo has told me the local health board is withdrawing t3 from its prescribing lists. Ive felt so much better since starting t3 and cant imagine going back to life without it.

I watched Elaine Smiths petition in Holyrood and wanted to ascertain if the recommendation is that t3 should not be withdrawn from those already on it in Scotland until the enquiry has reached its conclusion?

Also in the meantime, where should I seek a supply of t3 without a prescription? My friend is going to Mexico soon and I he could buy it over the counter there? Getting panicky that I may be without t3!

Im trying to compose a letter to my health board and would be grateful of any advice.

Also any comments on these results from Blue Horizon would be appreciated.

Vit b12 560 (197 - 771)

Folate. >20. (>2.9)

Ferritin 241. (13 - 150)

C reactive protein <0.6. (<5)

Total thyroxine T4. 49 (59 - 154)

TSH 0.32. (0.27 - 4.2)

Free thyroxine 6.5. (12 - 22)

Free T3. 4.7. (3.1 - 6.8)

25 OH Vitamin D. 45. (50 -200)

Thyroglobulin antibody 14.2. (0 - 114)

Thyroid peroxidase antibodies 134. (0 - 34)

I currently take 20 mcg t3 in the morning and 10mcg t3 at night, along with 25 mcg and 50mcg t4 on alternating days.

Sorry about the long post. Feel like Im going round in circles and dont know where to turn. In the process of changing my GP too. Very disillusioned!

Many thanks in advance.

[shaws]

I would contact Elaine Smith. As the Scottish Rules may be slightly different to the one in the rest of the UK, I know many down South have had it withdrawn instantly but there's been a furore about this. As far as I know, if we're on T3 it shouldn't be withdrawn. My surgery said they would no longer prescribe T3 but T4 only. Luckily I have sourced my own so I didn't need to argue.

This post may be helpful.

Hopefully others will come along soon and ass their comments.

[Debbie2012 in reply to shaws]

Thanks. Are you able to advise where to get a supply of t3 to keep me going?

[shaws in reply to Debbie2012]

Put up a new Post and ask if anyone could send you a Private Message of where to source T3. The post will then be closed for info on the forum and private message will be sent to you if they have the info. Also add this to your new Post:

My endo has told me the local health board is withdrawing t3 from its prescribing lists. Ive felt so much better since starting t3 and cant imagine going back to life without it.

[Clutter]

Debbie2012,

Despite the NHS England consultation saying Liothyronine should not be routinely withdrawn nationally CCGs have the right to locally blacklist T3 but are also supposed to consult on the impact to patients and public.

I don't know whether the devolved NHS in Scotland and Wales have the same or different rights and obligations. Have a look at this link and see whether it applies to Scotland mills-reeve.com/files/Publi...

The British Thyroid Association issued guidance that patients doing well on T3 should not have their prescriptions with-drawn and should requrest to remain on Liothyronine. See FAQS for patients and GPs in british-thyroid-association...

In England patients can report GPs who withdraw prescriptions they have been told they need.

CCGs do not have the authority to tell GPs what not to prescribe. Individual GPs, not CCGs, could be found in breach of the General Medical Services contract if they do not prescribe treatment patients have been told "they need".

bmj.com/content/358/bmj.j36...

The GPC has warned that GPs would be in breach of the GMS contract and could get into legal trouble by following the orders and refusing to prescribe patients treatments they have told them they need.

gponline.com/gpc-warning-ig...

[t3rcam]

Hi Debbie2012, I think your first port of call is your MSP. Send them your story and concerns and ask him/her to clarify the situation. My understanding is that once you have been prescribed T3 by an endo it cannot be withdrawn but the whole T3 issue is confusing. I take Armour which is prescribed and T3 that I source myself. A friend has issues getting T3 prescribed and her MSP has taken up her case. Hope this helps & stay strong or they’ll say you are depressed!

[Debbie2012]

Ive emailed my MSP to book an appt at her surgery. Thanks for the pm re where to source t3. Given Im on 30mcg t3 daily and 25/50mcg t4 alternating days, can you advise how I should take the 25mcg t3 pills....posted my blue horizon results and their doc suggested I may need my dose altered...but didnt say how. Thanks for your support.

[Lillie23]

Join Improve Thyroid Treatment campaign on Facebook. Lots of templates there inc to MP's etc. We are on Twitter too. Have you signed the petition too- change.org/p/itt-campaign-g...

facebook.com/groups/ITTCamp...

And Thyroid HUB UK for anything non campaign related.

Hope this helps x

[JMo1]

Hi Debbie2012. Did you hear the Health Minister, Aileen Campbell, speak at the end of the Thyroid Debate? She said Liothyronine will not be taken off the prescribing list in Scotland as was being threatened in England. Johann Lamont asked her if she was willing to write to Health Boards advising them not to withdraw until the end of the consultation as some are already auctioning it but she side stepped the question. I have written to ask her again, if she will write to advise them as my daughter has been refused T3 by my GP, supported by NHS Lanarkshire. I haven't had a response yet. You will hopefully be in a stronger position as you have already been prescribed T3 by the NHS. I will let you know the outcome but it might be worth writing to her yourself. Good luck!

[marigold22]

Debbie, I know exactly that feeling of going round and round in circles, confusion, what shall I do next to change my situation. At the end of the day - I realised that I myself could not change the political way of thinking, I wrote dozens of letters to NHS England, my MP, Jeremy Hunt, etc etc. You are wearing yourself out and honestly, will probably get nowhere; well, not quickly anyway. This problem of T3 is much bigger than any of us individuals or even as a Group here. Do you have a gut feeling that you have a conversion problem - converting T4 into T3? If so, do the DIO2 gene test privately. If it returns positive, then you can use that to get NHS T3. That's what happened for me. Just an idea. All that confusion earlier this year about T3 being withdrawn, caused me to have panic attacks, thought I had a lung disease (I don't thankfully).

[Debbie2012]

Thanks for your support. Just the boost I needed. Got a new GP who gave me a prescrition to get more t3 so I have another months supply. Composed a letter to send to the lead clinician and my consultant. Made a meeting to see my MSP. Still got a lot to work through and will post soon with more specific topics. Why does this have to be such a fight? But its empowering to have this support. Im indebted to you all.

[Debbie2012]

Just a quick update. I met with my MSP and gave her a letter which I copied to my new GP, Endo and Clinical Lead. She said the price the NHS is paying for t3 is a disgrace. She wrote a letter to the board of directors at local NHS and to Health Secretary. Within a week I get a letter from the clinical lead to say whilst the health board has withdrawn t3 from its prescribing list, this is not supported by clinicians. He said the process of withdraring t3 hasn't been fully implemented, and that I should resume my t3/t4 treatment as before. Im over the moon. Im going to Turkey later this year, so will stock up just in case. Thanks again for all your support.