Help t3

[Ganggywaller]

Hi everyone, went to see a private endo to trial t3. He advised that i will need to see a cardiologist, and have a bone density scan . Does anyone know if this is before treatment or after 3 yrs. Thsnks in advance for any advice.

[TiggerMe Ambassador]

Sounds like an odd request? You possibly qualify for a bone scan with the NHS which is not a bad idea if you have been under replaced or in your case hyper for any length of time and always good to know how your bones are aging... but why see a cardiologist if you don't have any heart issues?

[Ganggywaller in reply to TiggerMe]

Apparently i need scan and cardiology app when trialing t3

[TiggerMe Ambassador in reply to Ganggywaller]

Did he explain why? Or did you get the feeling he really didn't want to give you T3?

[Sparklingsunshine in reply to Ganggywaller]

That seems like a delaying tactic. I've not seen anyone else who is taking T3 being asked to to that, unless they have a history of fractures or heart problems. Sounds as though this Endo is falling back on tired old stereotypes of T3 causing osteoporosis and Atrial Fibrillation.

[Ganggywaller in reply to Sparklingsunshine]

Thankyou. I was wondering how i could fund the scan and cardiologist as i retire this year. Was wondering if same criteria applies on nhs

[Sparklingsunshine in reply to Ganggywaller]

Might be cheaper to find a different Endo.

[HandS in reply to Sparklingsunshine]

Not so- I have had the same checks done by both private and NHS Endos. In neither case did it delay prescribing - they were following NHS guidelines.

[HandS]

Hi, my Endo also requested a DEXA scan for me: both the heart and bone checks asked for are to tick a box against the perceived risks of heart and bone damage caused by low TSH.

There is plenty of evidence that these risks do not exist but the myth persists and any consultant will rightly want to ensure that he has checked your health when introducing T3 which will lower your TSH. This ensures he is adhering to clinical guidelines . I did not need tests before starting T3.

If you are seeing him privately, he can still request any tests via the NHS - you don’t have to have them done privately. Enquire about that option.

Hope all goes well for you .

Best wishes

[arTistapple in reply to HandS]

This is a ‘knotty’ problem. My private endo refused further treatment after I reported uncomfortably increased heart rate. An NHS endo, unaware I suspect, that I had a heart issue, had already refused further different treatment from levothyroxine treatment, “titrate her levothyroxine” by note to my GP. I was very ill after trying that.

I thought getting a cardio on board would help. Unfortunately it has had the complete opposite effect. Cardio is King. Endocrinology just follows - although in my case it should have been given priority years ago! Cardiology want to give me a regime of medication which is guaranteed to slow down my already slow heart rate. However it’s nice and convenient for the endo. He/she can then refuse treatment without a backward glance and move on to the next poor soul asking for ‘unrequited’ help.

There is no ‘standard’ treatment for hypos with heart issues - unless running away from having anything to do with it counts as treatment.

There is at best complete paralysis on the part of Endocrinolgy for patients with heart issues.

I am sorry to say I was listening today to the story of that beautiful young woman who died for lack of any care by medics for her ME. It was her Mum being interviewed on Sky. I could not help but compare our plight as hypothyroid patients. So many of the things they had come up against were so familiar to lots of things we say on the Forum. Unfortunately our NHS is so often not fit for purpose. NICE guidelines, created for the best reasons is taking away the thinking capability and originality and experience from our doctors. They are no longer encouraged to think for themselves or listen to patients. Just tick the boxes and if there are no boxes to tick, just hold up your hands - or worse, threaten the patient - that should shut them up!

[Ganggywaller in reply to HandS]

Thank you so much for your knowlledable advice .

[Ganggywaller in reply to HandS]

Thankyou again hands. Quick question did your nhs gp just refer you to cardiologist and for bone scan , even though your private endo requested it .

[HandS in reply to Ganggywaller]

Hi, yes that’s correct. When I was with a private Endo, he wrote to my GP and requested the tests to be done via NHS. He also requested all blood tests via NHS, and one time a liver CT scan. So all I ever paid for was an annual consultation fee. I saw him at his consulting rooms in his house. He did ECG there every year too. So it can be done - think I was lucky with him. I went back to NHS when he retired.

I am currently with an NHS Endo, who issues all my T3 prescriptions as GP Practice cannot.

It is so very difficult to navigate services as so many have their own rules. Always worth having a chat with Endo’s secretary if you have details and ask what’s possible with regard to tests - I have always found them to be very helpful.

Wishing you the best - don’t give up. Keep asking till you get what you need.

[HandS]

I’m sorry you are having to deal with these issues. Conflicts are prevalent across all areas of medicine where management of comorbities can limit options. I have come up against NHS guidelines several times and advocated for my own choice. Ditto when advocating for my adult daughter - which is very difficult when trying to navigate multiple medical disciplines.

Clinicians can seem to be intransigent and inflexible but they are highly regulated and contractually bound to adhere to standards/ Regulations.

There is never a one size fits all for any condition and sadly things go wrong. The Lampard Inquiry, the Lucy Letby Inquiry, the very sad case you mention , and many more, reveal how much can go wrong. If you look at published outcomes of complaints on the PHSO website, you will see that NICE guidelines are the starting reference point for judgements.

This is why we can feel we are being ignored over NICE advice. We can challenge it but it is stressful.

Luckily, with reference to the initial post, I don’t currently have issues the testing raised that suggested would affect prescribing for me. I was just sharing my experience of testing when being prescribed T3.

I hope you can access better options that work for you.

Best wishes

[pennyannie]

Sadly when unwell it's very hard to get through the system unscathed - let alone challenge it :

Is there someone who can go with you to appointments and supportive of you ?

Doing all this for yourself is very hard when ill - and the tendency is to cave in -

which is ironic considering there is meant to be a Health Care Service at our time of need :

and probably why I jumped ship and started self medicating several years ago as the stress of it all - simple exacerbated my symptoms.

Graves post RAI thyroid ablation 2005 and refused any treatment options other than T4 on the NHS is 2018.