HELP....... nhs Doctors are letting me down (again)

[Struggs]

ok, so I don't get on here as much as I would like, a thousand apologies. I'm now somewhat selfishly asking some advice. I was a patient of Dr Skinner. My GP was fully supportive of what he was doing and prescribed me first: levothyroxine, then the addition of liothyronine, then after having second child and me feeling REALLY ill, Armour thyroid. When Dr Skinner sadly passed away, I approached Dr Myhill, who write to my GP, then...BOOM, everything blew up. They withdrew they support of Armour. Ok, so I could live with this, so I approached Dr Myhill to prescribe me who asked for confirmation that my GP would blood test (free T3, Free T4 and TSH) and also monitor me for signs of thyrotoxicity. Something they had been doing for years. Now they have withdrawn all support, full stop. Nothing. I have been prescribed Liothyronine for circa 5-6 years now. What can I do to fight this...? I simply cant afford to purchase the meds I need to keep well for my two children (2 & 3) privately, as well as pay for private consultations with Dr Myhill and private blood tests too. Has anyone else had experience of this situation and can anyone help please, I have a meeting with my GP about this on friday. Im crying my eyes out writing this - so please excuse any bad spelling. xxx

[Clutter]

Struggs, there isn't an attendance requirement here so you're not selfish in asking for help. I'm not quite clear about this, has your GP been prescribing Liothyronine and now refused to prescribe it any longer or are they refusing to monitor your thyroid while you are having private consultations?

[Struggs in reply to Clutter]

Sorry, I wasn't clear. Yes, they had been prescribing Liothyronine for approximately 5-6 years (I cant quite remember), and armour thyroid for approximately year. They have been blood testing me for as long as I was on Liothyronine. All of a sudden they have changed their minds on this and I am lost. Any advice would be appreciated . x

[Clutter in reply to Struggs]

Struggs,

All you can do at this stage is to have the meeting with your GP on Friday to find out the reasons for stopping Armour and Liothyronine and whether alternative treatment and blood monitoring is offered. It may be an idea to take someone with you to support you and 'witness' the conversation. Make notes during the meeting in case you want to write to the Practice or CCG challenging the decision later.

A lot of CCGs are leaning on GP practices to stop prescribing NDT and Liothyronine to save money and because it is recommended that only an endo should prescribe Liothyronine, which is usually meant as an NHS endo. Not much can be done about stopping Armour because it is unlicensed for use in the UK and GPs aren't obliged to prescribe it but Liothyronine is listed in the BNF and can be prescribed. If only an NHS endo can reinstate prescription of Liothyronine you may have to ask for a referral but check out the list of NHS endos from [e-mail] first.

[Struggs in reply to Clutter]

Thisn is the exact situation, cost. Because I was never 'clinically hypothyroid' does this mean I have no case..? I have heard so many horror stories about trips to Endo's. I have been offered Burton, Derby, Leicester or Nottingham. I just cant see how they could help. Am I right..?

[Clutter in reply to Struggs]

Struggs, I don't know how having a case is made or defined and whether you get Armour or Liothyronine will be up to the endo you see and the hospital's prescribing policy. Some areas are issuing blanket bans on the prescribing of NDT and T3.

Ask for 4-6 weeks prescription to tide you over if you need to buy your own NDT online as delivery can take 21-28 days. You also need to ascertain whether your practice will prescribe either Armour or Liothyronine if recommended by an NHS endo.

Bottom line is if your practice won't prescribe Armour or Liothyronine you will have to accept Levothyroxine or buy NDT or T3 online. This doesn't mean you have to accept your practice's decision lying down without fighting your corner but you need medication while you appeal. There is a draft letter on tpauk.com/forum/ to help patients whose CCGs/practices are refusing/withdrawing NDT and T3 prescriptions.

I don't know your financial circumstances but 100 x 25mcg T3 tablets cost £16.90 and possibly cheaper if you shop around. Armour is expensive but there are cheaper versions of NDT available. PM me if you want sources or post a question asking for recommended sources to be sent to you via private messages.

[Struggs in reply to Clutter]

Thank you so much for this advice. The honest truth of it is that I have no faith in any endo's. Possibly the wrong attitude but given that I was never 'biochemically' hypothyroid in the first place, and my natural levels are 'just' within range, I cant see them helping me. Can I not lean on my GP to continue to prescribe for me, given that have for circa 6 years...? Thank you again

[Clutter in reply to Struggs]

Struggs, Your levels from 6 years ago would likely have deteriorated without replacement. You should certainly lean on your GP but if s/he has had instruction from CCG about prescribing it is the CCG you will have to do battle with. Check out the TPA link I posted as the draft letter and forum advice may be helpful.

[joyce59]

is the dr skinner mentioned in the post the same dr who set up a clinic in the birmingham area? does anyone know if the clinic is still running? ive tried ringing them and leaving messages (spoke to someone there last year for advice) but no-one has got back to me.

[Clutter in reply to joyce59]

Joyce, Dr. Skinner died a while back. I think it is Dr. P who has a clinic in Birmingham but he sometimes holds clinics elsewhere and has had ill health himself. Keep trying the clinic. They will get back to if you persist.

[joyce59 in reply to Clutter]

thanks clutter will keep trying.