I recently saw a GP to prescribe the levo that my private endocrinologist recommended in a letter sent to my GPs but she refused because she didn’t see an indication as my tsh was fine and wrote to my endocrinologist questioning it. I made an appointment with my named GP but unfortunately as the other GP had written it all over my notes, he then discussed at a practice meeting before my appointment where the general consensus was to decline it and have written to an NHS endocrinologist to ask for advice saying they prefer to follow nhs guidelines. That there’s no indication to prescribe because my tsh is ok. I wrote an email telling them about secondary hypothyroidism and said I was on 3 grains of NDT and gave them amounts with my last blood tests results the private endo had done where my t4 was 11.5 (11-26) and said my endo is moving me over to t3 and Levo but I hadn’t told the nhs I was on NDT, so in the letter they seem to be querying this saying none of my recent clinic letters mention it in medications. The hospital they are asking for advice from is one who I’ve already seen for hypoglycaemia who have falsely excluded hypopituitarism based on a morning cortisol blood test so I will be complaining to pals about negligence anyway. My private endocrinologist has mentioned that I need an MRI scan and the possibility of pituitary damage in the letter to the GPs.
Where do I go from here with complaining? I had stopped the NDT and started t3 a few days before the appointment with the first GP because I wasn’t expecting there to be any issues, when the first GP declined it I was still expecting the second one to give it a couple of weeks later but that didn’t happen either so I ended up ill as a result for a few days with terrible headaches and body pain as for 3 weeks I wasn’t taking enough thyroid medication until I could get levels back again with the NDT which I also had to order more of because I didn’t have enough. I was thinking of writing an email and insisting this be added to my medical record as a result of them refusing to prescribe medication but what else can I do? For now I’m getting my private endocrinologist to prescribe it.
Written by
Kitkat1982
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They can add your emails to your medical record, whether they will is an entirely different matter.
My main advice is PALs are rubbish. What you need is to make a complaint via a patient advocacy service in your area. These are often based in charities and are independent. Search online for 'NHS complaints advocacy' in your area.
KitKat the gp surgery is well within its rights to refuse to follow the requests of a private endo. You have bypassed them by going private and by not telling them you were on NDT. Now I'm not saying that they would have understood your thyroid blood results if they had known you were on NDT. But they were not given the whole picture and were interpreting your results as if you were not on replacement hormones. And that makes a difference.
Basically they are saying we haven't a clue what is going on here with this patient as we have not been involved in her treatment with replacement hormones therefore we want advice from our NHS endo team who are the consultants who guide us .
I understand that GPs are restricted to prescribing medicines which have been officially approved. There will be a list somewhere.
If a private doctor gives you a prescription you will have to pay for the medication.
I see a private doctor and am now on T4 + T3. My brand of T3 is not on the approved list so I pay for that. My brand of T4 is on the approved list, but as my prescription is from a private doctor I have to pay for that as well.
Edit . just realised you may have only wanted Levo from GP not T3 ? .. but even so some of the following still applies .
hi Kitkat1982 , there are some road blocks to getting what you want from your GP , but the blocks are put there by the current NHS guidelines for prescribing of Liothyronine (T3) , not the GP/ Surgery ..
1) Most (all? ) of the NHS areas that currently prescribe T3 , have a prescribing policy which specifically states if T3 was started in the private sector it must NOT be continued by NHS prescription UNLESS the patient is referred to NHS Endocrinologist first and NHS Endo confirms T3 is needed... NHS Endo usually prescribes initially for a trial period and may then ask GP to continue usually under a shared care agreement ... (GP 's don't have to agree to take over prescribing .. in which case NHS Endo continues prescribing )
So your GP's CAN'T prescribe just based on your private endo's request/ recommendation.. even if they wanted to .
eg my area have this wording for privately initiated T3 lancsmmg.nhs.uk/medicines-l..."Patients that are commenced on liothyronine in the private sector should receive ongoing prescriptions and associated monitoring from the private sector. If the patient commences or resumes NHS care following treatment for hypothyroidism by a private specialist the patient should be evaluated against NHS criteria and treatment commenced in line with NHS recommendations only if they fulfill the local NHS initiation criteria."
2) some NHS areas are still NOT allowing T3 to be prescribed on the NHS to any NEW patients at all. (although many are in the process of reviewing this.. or being made to review it , so the situation is very slowly improving)
if you happen to live in one of those areas, then the route to 'trial by NHS endo' is not open to you... in those areas there is no way to get a 'new' NHS prescription of T3. . it's only available to patient who the NHS have already prescribed it to historically.
3) similarly , if thyroid hormone (of any kind) is to be prescribed by an NHS GP for a diagnosis of Central / Secondary Hypo (with in range TSH) . then most GP's would want to see an NHS diagnosis of this confirmed first , and would not be willing to prescribe even Levo based only a private diagnosis of central / secondary hypo .
unfortunately the fact that you became unwell due to running out of NDT because you had assumed T3/Levo would be prescribed within a certain time scale is basically 'not their problem' .. because they didn't know you were taking it , they didn't prescribe it , and (as yet) they haven't got any evidence of your need for it .(or at least, no evidence they accept as valid for NHS purposes)
Same with private Endo saying in his opinion you need pituitary MRI etc.... a private opinon/ recommendation doesn't oblige the NHS to follow it , or agree with it . so you have no realistic ground for a complaint about that bit .... if they disagree with him about the need for MRI. and choose to believe the previous NHS Hospital Endo over him , there is not a lot you can do about that , other than ask for a second opinion about the matter on the NHS , or continue to see him privately.
So to be honest , it's going to be very hard to find any grounds for a complaint that would stick.
thank you. I’m trying to get Levo. It’s because of this ridiculous system why we sick patients have to play silly games like seeing a consultant first privately who also works in the nhs and getting them to transfer you to their nhs books because a GP will do exactly what a consultant wants if the letter has NHS on the top than if it’s private even when it’s exactly the same consultant. I’m going to have to find another endo who is able to do this and waste more time and money working the system which I’ve already had to do for another condition which is exhausting. A system which isn’t fit for purpose and is completely negligent.
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