New GP withdraws previous repeat T3 prescription despite DIO2 Inefficient T4 to T3 conversion (confirmed on Genetic testing 2022)

[RhianR]

Hi, has the above happened to others on here & what was the outcome for you please? My GP has my Genetic Test results (Regenerus Labs), along with a number of supporting letters from a highly experienced & reputable NHS Consultant Physician and Endocrinologist, who also has a Private Clinic alongside his NHS Clinic. I saw him privately because, as we all know, it's impossible to see anyone on the NHS these days, let alone anyone decent - and those I have seen from my Trust (Stockport) since my Hypo diagnosis (2011) have gaslit & treated me so badly. My Endo is not from my Trust but is in the Northwest where I'm based. My understanding is that under 'Patient Choice' one can request a Specialist referral outside their local postcode Trust. I had to get my previous GP to send a referral letter to him for me to see him privately, and my Endo wrote to them after each consultation. My Endo says his NHS clinic is still rammed due to all the waiting lists etc. I digress. Anyway, my Endo has explained to my GP my proven limitation in converting from T4 to T3, complete with genetic testing from 2022. My result is 'CT' i.e one parent derived. My Endo has also highlighted to GP that up to 10% of people on Levothyroxine alone may have tissue level hypothyroidism, and according to a recent session at the British Endocrine Societies annual conference in Glasgow. And, turning from the scientific and medical justification to the nationally agreed guidelines, my Endo told my GP that NICE does endorse the supply of Liothyronine in primary care, as long as an endocrinologist has recommended it. He has! My Endo has offered to speak to my GP but they've completely ignored this - and for the past 3 weeks (since I submitted a written complaint) they've apparently been seeking advice from the Stepping Hill Stockport NHS Endos! I.e The very same useless articles who insisted I was "absolutely fine & doing well" on Levothyroxine only treatment for 10 years when I told them all repeatedly that I felt horrific. I gave up on the NHS and I started taking T3 on private prescription in 2021 (alongside T4 Levo) - and (after a HUGE battle) this was eventually prescribed in mid 2023 on the NHS at my previous GP. They begrudgingly accepted my Genetic Test results, and I threatened them with legal action too. I cannot return to them under any circumstances bc they were dire over so many things, including the T3 saga. Please does anyone on here have any advice or guidance for me? I am so angry and upset with my GP. I appreciate that I'm not alone in where I find myself today. Frustratingly I know of other patients at my GP Practice who are on T3 without any Genetic Testing proving their Clinical need. Livid at the double standards in play. Many thanks in advance. Rhian 🌷🌻🪻

[SlowDragon Administrator]

Can you get referral on NHS to your endocrinologist

GP should not change or meddle with thyroid medication

You should be referred back to your endocrinologist and as he has NHS clinic ,……insist on referral to him

Meanwhile look up number on T3 in your ICB area here

(And can look up if any others prescribed at your GP practice too)

openprescribing.net/analyse...

Stockport ……not a high number prescribed

Only 283 prescriptions in last year

openprescribing.net/analyse...

[RhianR in reply to SlowDragon]

Thanks so much for your reply 😊 I agree with all you say. Yes, Stockport is a nightmare on T3. Basically they do not care & I am certain they're going to use the loophole argument of " Yes he is an NHS Endo but you saw him privately and NICE Guidance says must be NHS Endo so eff-off". Excuse my language but am beyond angry & upset when the root of my Hypo & ME/CFS diagnosis is all rooted with this same GP Practice dating back to as early as 2004 after my son was born. They late diagnosised Hypo and then severely undertreated me with T4 only (despite my regular protestations) until 2020 when i left them. I returned in Jan 23 for reasons explained in my post bc felt i had no choice. The Endo I've seen for 10 months now (and so T3 has been supervised the entire time as per NICE Guidance) is Wigan based and I'm Stockport. Can I request an NHS referral outside my Trust? My previous GP did a Private referral to them bc the Endo wanted that, but I saw the Endo privately bc their NHS clinic was full. It probably still is but I will ask the Q. My formal complaint was submitted in writing 3w ago now, and unbelievably yesterday they sent me an email stating they've referred my case to an NHS Endo at Stepping Hill NHS Stockport who needs to verify if the NICE Guidance has been met BUT they have all the evidence that it has + a DIO2 Genetic test result from 2022 which states that I am compromised and will not properly convert T4 to T3!!! Yet they still do this. As said, I believe they will use the you saw an NHS Endo but in their private clinic as a loophole. Any thoughts? I feel like I'm banging my head against the wall with them. Many thanks again 😊

[waveylines]

Am so sorry to hear this. Has the GP Surgery sent you a written letter explaining the reason for stopping prescribing T3? I can almost bet its the specialist Pharmacist who has triggered this. Probably been reviewing your meds. They are tasked with cutting costs by the ICB. I guess you maybe up against the opt out clause that GPs are using more and more. They are legally entitled to refuse prescribing any medication that they are not trained in. However if other patients in the practise ARE being prescribed T3 in your practice then this GP has some explaining to do. You are entitled to an explanation.

I would email in a formal complaint about the stoppage of T3 to the Practise Manager and copy in your nhs Endocrinologist.

Thinking about you. Hugs xxx

[AKatieD in reply to waveylines]

How about asking the practice manager to make you an appointment with the gp that does prescribe T3, that way you point out indirectly that you know they do and the inconsistency without getting angry.

[RhianR in reply to AKatieD]

Hi, I think you meant your reply for me who posted. Thanks for replying. No, I've put my complaint in writing to the Practice Manager and ccd into GP, although I think it's their 'Pharmacy Team' who stopped my T3 prescription. There's no point having a conversation with these GPs because they do not get it, and anyway all the information supporting my ongoing Clinical need for T3 treatment is on my records and they know it! I am T4 to T3 compromised and have a DIO2 Genetic Testing result from 2022 to prove it (and multiple supporting letters from my *NHS Endo who i saw privately), but yet they still refuse to acknowledge. I have been on T3 since 2021 (Private prescription), and it then became an NHS prescription in mid 2023 via a different GP. This new GP Practice is refusing to acknowledge the facts/evidence and is determined to continue to refuse. I can only hope they eventually see sense. Thanks again 😊 * for explanation of this please see my reply to Slowdragon.

[AKatieD in reply to RhianR]

Yes, apologies did not think before hitting reply.

I am in the same situation with needing T3 but never tried to get NHS to prescribe as did not think they would take any notice of needs/ blood test/ genetic test etc. Just bite the bullet and pay a fortune (have similar situation with HRT that have to buy too).

But even if pharmacy team are objecting, there must be a g.p. who is responsible for clinical needs and has some input into prescriptions. You need your g.p. to be the one who is prescribing T3 as you said some people are getting it, so sombody must be overriding the pharmacy lot.

[RhianR in reply to AKatieD]

So sorry to hear of all your struggles too 😔 😟 🙁 What was the result of your DIO2 Test and when did you take it? Mine was CT i.e One parent and I took the test in 2022. What reason has your GP given to ignore your DIO2 result? It's absolutely disgusting how we are treated. I have had to get a 1 month private prescription, but this was only possible with family help. I cannot afford it, and if my complaint is not upheld I will not be able to continue on T3. Yet it has helped me so much, incl I have lost 2 stone in a few months with no change to diet whatsoever. I cannot 'exercise' due to CFS. For context, and since developing Hypo, I gained 6 stone in weight over 10 years 😔 Prior to diagnosis i never had any weight issues, and if anything was underweight. Whilst I'm not cured of the Hypo symptoms on T3 it does help my functioning and the weight loss helps my overall health. Late Hypo diagnosis & severe undertreatment on T4 since 2011 only led me to the hell that is ME/CFS (since 2018,) although I had symptoms of Chronic Fatigue after the birth of my Son in 2004. All was ignored and brushed off ofcourse by successive GPs ofcourse. Thanku for replying 🙏

[AKatieD in reply to RhianR]

Yes mine was CT for both DIO1 and 2 and was done when the test first came out several years ago.

Afraid the g.p. have never engaged with any thyroid stuff. I stopped taking the levo they supplied over 5 years ago as it did not seem to help. They never managed to get a proper thyroid blood test done as lab ignored what they were requested to test and just did TSH ( maybe T4 too, I forget, but no T3 or anything else). They never questioned that a hypothyroid patient was not getting any treatment and so as far as they knew should be dead.

Anyway, I got used to paying for my own thyroid tests and importing meds from USA to get thectreatment I needed. At least that meant I did not have to pay for consultants too. Currently costing me about £130 a month plus 6 monthly testing.

I started HRT about 3 years ago, g.p. again does not help because I am intolerant to the cheapest progesterone and they wont suply another bioidentical version. This time I cant import without prescription which means £300 for consultants and £120 for testing every 6 months since then, plus medicines costing about £120 per month.

All for relatively straightforward stuff which should all be free because of the medical exemption cert for prescriptions. Defo cant afford to retire from profession as only just manage with medical costs on full time work!

Needless to say quite angry and skint but cant afford to be unwell.

[RhianR in reply to AKatieD]

Bless you, this sounds absolutely horrific too! Well done for coping so well & for all you do 💪 Showing my ignorance now, but what's the difference between the DIO1 test and DIO2 test? It was suggested to me to get DIO2 tested, and I wasn't aware of another one too. I cannot understand why we are all treated so badly & refused help, when the facts & evidence speak for themselves. It does reduce one's faith in humanity doesn't it 🤕

[AKatieD in reply to RhianR]

The description on the test result says DI01 responsible for clearing reverse T3 and facilitating conversion T4 to T3 in plasma and surrounding tissue. DI02 for local conversion to T3 in thyroid, placenta and brain . But can't say I have a clear understanding myself. Other than I do better on T3.Think there is no chance g.p. will have heard of, understand and so believe in though.

[RhianR in reply to AKatieD]

Thank you so much & take care 😊

[RhianR in reply to waveylines]

Hi and thanks so much 🙏 🌻🪻🌸 Yes, I sent my Formal Complaint in writing on 20/03/24, so 3 weeks ago now. I submitted it immediately upon discovering that they had not given me my requested T3 prescription, which had been on REPEAT on their system and on the NHS App too for the past c. 8 months since it was NHS prescribed by my old GP (who was a total b'stard over it all too, but eventually caved in bc of all the evidence). Please see my reply to Slowdragon for the rest of the story. So exhausted with all this continous strain 😩 I hope you have made progress with your prescribing issues as I know you were having major issues with your meds too. These people are an absolute disgrace to the medical profession 😠 😡 👿 😤 Take care ❣️

[waveylines in reply to RhianR]

They are......lol. I'm so sorry this is happening to you too. Its mot about care but saving money. It's Prescquipp and the specialist pharmacists with the ICBs causing mayhem to save money. That's it. What works for us medically is of zero significance. Lol..... x

[RhianR in reply to waveylines]

Agreed 🙁 They wouldn't do this with Diabetic or MS patients though would they? Or Cancer patients? Just us lot. Furious 😤 Thanku for the moral support given your own sh*tty situ. Any +progress to report? x

[Brightness14]

How much T3 do you take daily.

[RhianR in reply to Brightness14]

Hi. Now 80mg in 3 doses. 30,30,20.

[RhianR in reply to Brightness14]

P.s this is alongside T4 Levothyroxine 100mg daily which I've been NHS prescribed since 2011. However, my new GP Practice has also seen fit to reduce this to a 28 day supply! So I've had to get a private prescription of both T4 and T3 whilst my Complaint with them is ongoing. Utter nonsense 🙄 😒

[waveylines in reply to RhianR]

They have too much power these Gzps and their specialist pharmacists act like Gods!! Prescquipp have a lot to answer for!!!

So sorry Rhian.....keep fighting, hard though it is!

[RhianR in reply to waveylines]

I will never give up - I might be knackered but I am stubborn!! Thanks so much & take care you too 😊

[inthedoldrums]

Hi

Coincidentally, I have not long read through the latest NICE guidelines and it seems to say that it must be an NHS consultant and they will not accept it from a Private consultant. I am sorry for the trouble they are causing as if it isn't hard enough already. I, also, have the D102 thing but have just started on the pathway to getting prescribed T3 again but went through battles in the past for it before they cut me off. Best wishes and best of luck to you.

[RhianR in reply to inthedoldrums]

Hi and thanks for your reply and sorry you've gone through all this nonsense too. Most on here are the same. Yes, I know T3 needs to be NHS Supervised, and my Endocrinologist is an NHS Endocrinologist so they really do not have a leg to stand on if they refuse. My GP referral was private because of NHS waiting lists. But the Endocrinologist is still an NHS Endocrinologist, and his correspondence has all been sent to them in that capacity as they know full well and can check him out to verify. They're just being pedantic and need to be very careful because I will not give up, ever. Sick i may be but strongwilled💪 Take care 🙂

[AKatieD]

That is another idiocy. If you see a consultant privately, it does not matter if they work in the NHS too (as most do), they are considered to be irrelevant. If you were too see the same consultant under an NHS appointment, magically their opinion matters.

Presumably that is because in the private appointment they might offer what you need but the NHS can't have that in case it costs.

[RhianR in reply to AKatieD]

Yep, it's all utter BS and nonsense 🙄