GP finally listened to me

[cyberbarn]

Yes, it is good news, but of course there is also bad news. The good news is my GP referred me to endo, the bad news is that in Gloucestershire the waiting times are over 300 days.

I thought explaining what I did to get the GP to listen this time might help others. So here goes.

As an academic that does presentations, I decided to treat the appointment as a presentation; I made some notes about what to say, developed the narrative (a story) to make it flow, practiced what I wanted to say while doing dishes, falling asleep, then adjusting the notes. I went back and forth a few times until I had written exactly what I wanted to say, so that on the day I could present it to him without actually reading off the piece of paper with the notes.

But then I decided that I would do what my son does (he is disabled, autism and a physical disability plus fatigue). My son and I write bullet points together then I type it up, print it off, and my son hands it over to the GP on the basis that the GP can read faster than my son can talk.

So on the day I handed over my 'presentation' for him to read. The first paragraph told him what I wanted to discuss, the second one included this:

"When I did my Personalised Care training with NHS England we had an exercise where we were supposed to prepare our story of a recent encounter with the NHS. I managed to put my hand up first to tell my story.

"I will tell it to you in its entirety now.

"I don’t have a story to tell anymore because nobody ever listens to me. And when nobody listens to you, you stop talking.

"I didn’t say a word after that, I just left silence until someone said, ‘Wow, that’s a powerful story.’

"So please listen to me this time, especially as we have new information. "

He looked up after reading that bit and said, ' I can see why you asked me to read this then."

Yep, if the GP won't listen to you, make'm read it!

It worked a treat. He asked a couple of questions, I explained a few more things about T4/T3 conversion, and he said he would do the Advice and Guidance because it sounded like I need to see an Endo. Two days later I was triaged and the 'choose your clinic' letter came through.

And now the bad news, I have a choice of three clinics, Cheltenham General, Gloucester Royal and Tewkesbury. I am at the opposite end of the county to Tewkesbury, so I try Cheltenham first. Waiting list over 330 days. But no appointments available. Same at Tewkesbury. Gloucester's first appoint is the end of January 2026!

Well, I have waited over 5 years to get this far, I guess another year won't matter Ha ha ha! 🤣

[arTistapple]

Brilliantly thought through. Thank you for posting. What about an endo even quite far away? A trip away on the train. Make it a special day or even overnight. That would give you more choice. I only had to wait about six weeks.

Check Thyroid UKs list and ask for recommendations.

[cyberbarn in reply to arTistapple]

It is tricky with my son, I can't leave him on his own, and car journeys makes his pain a lot worse. And we don't live anywhere near train stations and his wheelchair on trains is a nightmare. So I have to balance his conditions with mine. Typical carer that I am, I put him first.

[arTistapple in reply to cyberbarn]

Totally understand. Nothing is straightforward for us. Everything is a negotiation. So much more to consider than that which ‘normal’ people take for granted. A journey into town needs precision planning. Car parking. Length of walk etc etc etc. you would think it was planning for an advance of an army! Anyway good luck.

[cyberbarn in reply to arTistapple]

Yes! It is what they call the invisible labour of carers and parents of disabled children!

[SlowDragon Administrator]

have you got the list of recommended thyroid endocrinologists?

Vast majority of endocrinologists are diabetic specialists and not suitable

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists NHS and Private

If you could afford to initially choose an endocrinologist to see privately and who also does NHS consultations then you might transfer to their NHS list

thyroiduk.org/contact-us/ge...

[cyberbarn in reply to SlowDragon]

Thanks, yes, I got the list. Not much around locally to me though. One NHS consultant in my county has been known to prescribe T3, but we don't get a choice of which consultant to see, just which hospital clinic. No indication of which consultants see people in which hospitals.

Rural areas get a poor service because we can't just go to a different hospital down the road, we don't have much choice, either private or NHS.

[SlowDragon Administrator in reply to cyberbarn]

Some on private list do consultations on zoom if that’s easier

[SlowDragon Administrator]

What vitamin supplements are you taking

When were B12, folate, ferritin and vitamin D last tested

For good conversion of Ft4 to Ft3 you need good vitamin levels

Presumably your hypothyroidism is autoimmune

Have you had coeliac blood test

Are you on gluten free and/or dairy free diet

Also has your son had FULL thyroid and vitamin testing too?

[cyberbarn in reply to SlowDragon]

Last time they were tested all was fine, yes, it is autoimmune, yes, had coeliac blood test, and gluten free and/or dairy free makes no difference to me.

My son is under a NHS dietician and and she asked for vitamin testing. The surgery overlooked the letter so when we raised it with the GP he had to grovel a bit on that one, but those tests are coming up. Have to wait four weeks now for blood tests with the surgery!

He had the full Medichecks thyroid and everything was fine. No noticeable antibodies and T3/T4 in a nice balance. He has just switched to a different heart drug and that is making a difference to his POTs thank goodness!