Response from my MP regarding prescribing of Liothyronine.

[Flecmac]

I sent all my correspondence with ICB to my MP regarding above.

Here is his response…….

Thank you for re-sending the attachments.Having looked further into the issue of prescribing of liothyronine more broadly, I understand that the majority of patients suffering from hypothyroidism can be treated effectively with levothyroxine alone, but I know that liothyronine is perceived to be an important medicine for a small proportion of patients in order to maintain health and wellbeing.I understand that the prescribing of liothyronine is only supported if initiated by, or considered appropriate following a review by, an NHS consultant endocrinologist.With regard to costs, in 2021, the Competitions and Markets Authority (CMA) concluded an investigation and found that pharmaceutical company Advanz charged excessive and unfair prices for supplying liothyronine tablets. The CMA fined the firms involved a total of over £100 million.As well as imposing substantial fines, the CMA’s decision makes it easier for the NHS to seek compensation for the firms’ behaviour, by way of damages, should it choose to do so. In the circumstances, I believe my previous advice remains the best way forward- that is to say that in relation to your individual complaint, if you are dissatisfied with response from the ICB (CCG), I would recommend you pursue the matter through the Parliamentary and Health Service Ombudsman.  I would also recommend you follow the advice in the response of from the ICB(CCG) with regard to possible treatment options. For more information on making a complaint about the NHS to the Parliamentary and Health Service Ombudsman, please see ombudsman.org.uk/making-com...

Best wishes, 

Tom

[ Edited by admin to make sure there is a space after the link and before "Best". ]

[Buddy195 Administrator]

I’m so glad that you went to the trouble of raising the issue with your MP Flecmac. It seems to be a pretty standard response to me, similar to a reply I’ve seen from someone else. I think it’s important to raise the issues around prescription and access inequality 👍

[Flecmac in reply to Buddy195]

Many thanks. Yes it’s so important to raise such an important issue. I have also contacted Healthwatch and await their response. 😊

[McPammy]

I also wrote to my MP. I got a similar reply. Fortunately for myself I do get my liothyronine prescribed by my NHS Endocrinologist. This is mainly due to my TSH not being suppressed during my trial of combined levothyroxine and liothyronine treatment. I was threatened before my trial that if my TSH goes suppressed they would stop prescribing liothyronine! I did think how stupid is that. They need to help manage the dose properly for myself not completely withdraw it. I had very low T3 blood results, only converting 8% from levothyroxine. Also I did the DIO2 gene test which came back positive. I was in a real mess being unable to walk it got that bad. Now I walk over 10k steps briskly every day and full of energy. It was and has been a life saver for myself. It’s all about the cost to the NHS nothing more I believe. In the EU or USA this drug is widely available and recognised as a need for those who struggle to convert T4 to active T3. Very frustrating.

[Flecmac in reply to McPammy]

I’m pleased that your endocrinologist still prescribes. My NHS endocrinologist has also continued prescribing so far, although he is not local, my husband drives me to another county, so it’s not convenient as I have to go to the hospital chemist there. My local hospital were useless, wouldn’t even recognise that I had hypothyroidism. My Endocrinologist told me that if I had a positive DIO2 test that I should get my script from my GP. I haven’t done this as it’s expensive and I don’t have the awful symptoms that you have. I am so pleased that you are now so much better, well done!! 😊

[McPammy in reply to Flecmac]

I totally understand what you’re saying. I too have had to travel outside my area to another area. Like you I have to collect my liothyronine from the hospital pharmacy only. It’s a bit of a drive. I’m very glad I’m now recognised by the NHS as in need of liothyronine. It was a bit of a battle but thankfully my GP is in support. I can’t get the liothyronine from my GP but he does prescribe liquid levothyroxine instead of tablet form now. I find the liquid levothyroxine helps me manage my levels much more precise hence doing a fine balancing act to keep my TSH just about in range. So far so good but it can be tricky. I tend to keep my Levo dose low as possible without feeling anything negative but don’t change my liothyronine doses. I do feel very energised, positive and happy these days after coming out of a two year very dark period struggling to find what on earth was wrong with me. Simply I needed T3 liothyronine. I do hope your feeling well and levels under control. It’s worth the journey to our hospitals. I do wonder though what’ll happen as I get older to collect them. I can only get there by car.

[Flecmac in reply to McPammy]

Thank you, I’m feeling better than I did over a 15 year period.

Same here, hour and half each way, my husband drives, he’s 73 with his own health issues, so yes it’s a massive concern. I’m curious as to why you have to have TSH ‘in range’. Usually our TSH is below or undetected on medication, that’s what I’ve learned on here.

[McPammy in reply to Flecmac]

there does seem many on here with suppressed TSH’s. Drs don’t like it when it’s suppressed. They say it causes heart and bone issues amongst other symptoms. I don’t think it’s automatically suppressed when on T3 for all people. I’m living proof of that. I’ve spoken to others also who’s TSH hasn’t become suppressed. Good luck I do hope your prescription and we’ll being continues.

[Flecmac in reply to McPammy]

Many thanks and very best wishes to you on your journey. 😊

[TSH110 in reply to McPammy]

Thing is it’s not a saving when you need a plethora other medical help to survive nothing more than inadequate thyroid hormone therapy. It’s false economy and leaving people unwell when they don’t need to be unwell. Despite the t3 price dropping they persist with this nonsense.

[Flecmac in reply to TSH110]

How strange, that was my response to him! 😊

[TSH110 in reply to Flecmac]

Fell on deaf ears it seems ☹️

[Flecmac in reply to TSH110]

Don’t know he hasn’t responded and probably won’t!

[TaraJR]

Which ICB are you in?

And did you send them details of all the national guidance that they should be following?

(apologies if I've asked before but I can't remember)

[Flecmac in reply to TaraJR]

My ICB is Nottinghamshire.

Yes I spent a couple of months gathering everything, couldn’t have been a mire robust complaint, very very thorough, following all advice on here and on ITT. I have forwarded everything to my MP and Healthwatch (still awaiting their response).

[TaraJR in reply to Flecmac]

Forgive me - I remember it, and our correspondence now - I hadn't remembered your name on here!

Has the ICB replied recently to your complaint which detailed all the national guidance etc? How did they counter that?

NHSE are refreshing their guidance on T3 very soon - patient groups have been lobbying them. I'll update on here if I have any news.

[Flecmac in reply to TaraJR]

Many thanks.

No problem at all.

Yes, they replied to my original complaint but not yet to my response to theirs. They said their response should be before Christmas, but I’m not holding my breath as their first response took quite a few months.

I’m not sure if I posted their response on here but I think I may have posted it on ITT, or maybe the other way around, it’s all become a blur. I’m not sure how to find my posts.

It’s great to hear that NHSE are refreshing their guidance on T3. It will be very interesting to see what they have come up with.

[TSH110]

So he’s working for you 🙄 They probably all have a stock reply on the database of thyroidwashing responses to gaslight and fob off constituents who are suffering because of this stupid policy.

Don’t do something positive and try and overturn it, for the 85k pa plus expenses , subsidised meals and no doubt second job to help keep the wolf from the door - easy money eh?

I see Tom Tugenhot has not got a second job, for the record. Haven’t checked all the other Toms.

[Flecmac in reply to TSH110]

Precisely!

Try Randall.

[TSH110 in reply to Flecmac]

and he’s got Axial Spondyloarthritis (a form of ankylosing spondilitis) which is autoimmune….he ought to be sympathetic to our plight.

[Flecmac in reply to TSH110]

Yes that’s correct. Unfortunately I doubt that would be considered. Possibly all thyroid disease might still be labelled as a ‘woman’ thing which of course isn’t true, and few understand or even know about autoimmune thyroiditis. Yes he should be sympathetic, it’s all the red tape etc.

[TSH110 in reply to Flecmac]

Couldn’t agree more, but I have AS and thyroid disease. He looks a bit thin and gaunt to me and eyes a bit prominent even got spartan outer 1/3 eyebrows - undiagnosed hyper? He’d be more sympathetic if they whipped out his gland and he didn’t do well on Levo

[Flecmac in reply to TSH110]

Well spotted. Yes he might be! I think thyroid disease is something you have to have a vested interest in and a willingness to research well. It’s hard work but has to be done. 😊

[Flecmac in reply to TSH110]

I actually quoted ‘Theyworkforyou’ in my response to him yesterday.

[TSH110 in reply to Flecmac]

nice one!

[Flecmac in reply to TSH110]

Thank you.

[serenfach]

My health board told me it was a Government directive. The Welsh Gov told me it was a health board decision. I have copied the answers to each other and told them to sort themselves out. Yeh, they will take notice...not.

[Flecmac in reply to serenfach]

It’s absolutely disgusting! The lengths we have to go to as well and then to not be heard!