Me and Endocrinology

Share your story Diagnosis and treatment
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Good morning.

Just interested in your opinions, please :slight_smile: In March, an Endocrinology Doctor wanted to start work on finding out why my BP can run sky-high with no meds or other conditions. I didn’t feel ready then and still don’t as my recovery continues to go well.

In summary, had a TIA just before New Year 2022. Root cause was super-high blood pressure (hypertension). This condition was unbeknown to me. Was in hospital for a week before being discharged (with all my meds). BP was self-monitored at home and by March was down and had plateaued to 125. Stroke Doctor was super-happy with that - so I was handed over to Endocrinology for Chapter 2.

Later the same day, saw an Endocrinology Doctor. She wanted to immediately change half my meds. With recovery still ongoing (incl. getting back into work), I’d mentioned the root cause exploration wasn’t top priority - and my BP had only just stabilised in the last 7-10 days!

I came away feeling demoralised. That day had started so positive and bright. The Endocrinology Doctor seemed to know nothing about me or why I was there. She was more interested in challenging the meds I’d been put on, telling me why it would be nice to find out “why” (my BP root cause) and her mannerisms were poor. Not prepared, hard to understand, and unwilling to listen. Even now, she keeps calling me each week to ask what I’m doing.

Yes, I’ll do this - but not then and not just yet. I wasn’t and still don’t feel ready. I just want some normality for a while or at least feel ‘ready’ for this part. Ready to be fiddled with, messed around. My meds combo was and is still working. I’m stable, happy, recovering very nicely. Surely that’s fair?

Thank you for reading and listening :slight_smile:

Jonty.

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Hi Jonty, completely understand how you are feeling, quite understandable as your recovery is going so well. My hemorrhagic stroke in 2017 was also caused by high blood pressure that I didn’t know I had. I have never been referred for any further tests and bp has stabilised following the meds prescribed on discharge from hospital.

Might be worth talking your concerns through with your GP just to put your mind at rest. Your recovery going forward is the important thing.

I hope you get some further information soon. Keep up the good work.

Regards Sue

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I can see exactly where you are coming from Jonty but, just from looking at that diagram below, I can also see why the Endocrinology Doctor would really like to see you again and get to the bottom of your BP caused this stroke. Don’t you want to know what caused your stroke so you can possibly prevent another more serious one. All you’ve really had done so far is the proverbial band aid stuck over the wound.
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My MIL is 80 in a couple weeks! On Tuesday she went into hospital with lung cancer, to be operated on…she had the middle lobe removed. She’s coming home today looking all fit and healthy and ready for radiology on a spot on the other lung. She’d worked herself up into a right state before the op, she’s a tough, strong, healthy lady who can deal with anything…other than her own ailments, then reverts to almost being childlike in attitude. But it’s understandable in a way as 7 years prior to this, she had a Whipple op for pancreatic cancer. Now that was a much harder one to recover from with the chemo on top of it. But she did eventually bounce back and even attends some of my fitness classes with me, and she will again once her wound is healed.

So, is it really just that you are not ready to be fiddled and messed around with, or is it the fear of the unknown/and you don’t want to know? Prevention is better than a cure as they say.

Because really, you are not out of the woods yet. Yes your meds are currently keeping everything under control…for now…but you don’t know why your BP is going through the roof and that’s what caused your head to go bang in the first place. So what about the longer term. I could understand if you were only a couple months into your recovery but it’s over a year now, don’t you think it’s time to bite the bullet and find out? Potentially prevent a case from happening that won’t recover from. There, I’ve said it!

No doctor knows anybody until they start treating them, and you just “don’t wanna go” :laughing:

Doctors, they can’t win can they, they’re damned if they do and they’re damned if the don’t. In one post we’ve people complaining about never getting to a doctor and then here we have someone getting nuisance calls from a doctor wanting to see him :sweat_smile:
It’s a thankless profession to be in :face_with_diagonal_mouth:

I’m sorry if this sounds like a “tough love” post. It’s just how your OP came across to me and I could have got wrong end of the stick completely, so if I have, I do apologies :blush:

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Hi
My stroke was caused by high blood pressure and I did know I had it.
A couple of years before I had been seeing the endocrinology teams to work out what caused it. At that stage they managed to identify that one or both adrenal glands were faulty and leading to the production of too much adrenaline, often not when it was needed. An MRI scan showed one gland had a lump on it (when you are told that it’s one of those omg moments) but apparently it’s not uncommon as we age. Also had low potassium levels which made me exhausted.
There are presumably all sorts of reasons but it did take some real time to identify it for me.
Hope this helps

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Good morning.

A BIG thanks for having read and shared and commented. I’m extremely grateful. It’s so good to have this resource available to chat, discuss etc. I feel more at ease for having just put thoughts down on paper per se.

I do want to start this Endocrinology chapter - soon. Back in March, thus much earlier in my recovery, I really wasn’t comfortable - and somewhat angry that another Doctor wanted to criticise another who’d got me medicated and stable. It’s mid-April now and I feel stronger in all ways.

May will see a couple of clear months. I’ll give the Endocrinology Doctor another shout and advise I’ll switch the meds and march forwards with her. Last week had also seen a full, working at the office day. That’s helped. It’s not about work of course, it’s about me.

Again, BIG thanks!!

Jonty.

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One aspect I didn’t really appreciate is that some medicines can only be requested by certain medical professionals.
The endocrinology team could authorise this but the gp could not

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