To feel very underwhelmed by endocrinology appointment?

[Meeeeep05]

I feel deflated and want to cry honestly!

I was referred back in December as a cortisol blood test came back very high. My symptoms also include persistent bloating, acne, limited hair growth, sparse eyebrows, excessive thirst, some kidney pain, oily hair.
I feel I have a massive hormone imbalance. I have had diabetes and thyroid issues ruled out.

The GP at the time didn’t really have a clue which is fair enough so referred me.
I’ve waited 8 months for this appointment so was really really keen for it, especially as my symptoms have worsened.

I just had it and it essentially felt like another gp appointment.

I explained my symptoms and she just nodded and said my cortisol sounds high (I know it is, I knew that 8 months ago). She suggested 24 hour urine test (which I’ve already done and awaiting the results). She then left it at that, to review in 2 months??

• I mentioned my kidney pain and that I feel this may be linked to adrenal issues but she didn’t refer back to this at all
• I have PCOS and she didn’t even make the link between some of my symptoms and this - even I know that this can affect blood sugar and therefore thirst, but this wasn’t even mentioned
• I asked what else can cause these symptoms and she said diabetes and thyroid imbalance (I know already that it’s not these)
• I mentioned hormone imbalance and she just told me to limit stress??

I don’t know, I just constantly feel fobbed off. I feel like specialist appointments in the NHS don’t exist anymore. I waited 8 months for answers, whilst I deal with oily hair and skin and bloating and thirst and tiredness. I’m so fed up.

So is it worth following up or taking further?

❤️ of course it's worth following up - it's YOUR health, nobody else's x

Without test results, what did you expect her to do?

It’s more the fact that nothing was explored. She didn’t even mention PCOS or adrenal as possible reasons.
it just felt like a GP appointment in that she just nodded and said my cortisol is high (I knew this already, I’ve already had the blood test).

it just felt like 8 months of waiting came to nothing?

Can you afford a private consultation?

Honestly not really 🙁

Unfortunately, we’ve been in the system a long time so I know how you feel.

You've waited months and had your heart set on an explanation. You aren’t wrong to want an answer but consultants can’t always fix conditions, or even able to diagnose.

It's clearly not a simple answer to why you feel you way you do, so you can only ask for a second opinion or continue along the consultants route of waiting another two months.

Sorry but it sounds very normal for a first endocrinology appointment.

Without the test results there isn't a lot the doctor can say - you are at the very beginning of a sequence of tests before you get any answers.

Dr Google also suggests that endocrinology will want the 24 hour urine test done twice, so your doctor may well be following the diagnostic process not fobbing you off.

Have you done anything else to try and tackle the bloating and acne? Have you changed your diet and exercise?

I would be looking at your lifestyle and see if you can help yourself in the meantime.

You do know you arent a special case?

They will have seen this time and time again. They werent blown away by it, it is not a one off and they need to wait for test results.

I know it's hard to live with they see far worse and this is bread and butter work for them hence why they seem blase.

Edit - the first time i saw an endo there was a several months wait for a MRI. Only once all results were back did I get any treatment.

Pay to go private if you dont want to wait.

This I’m afraid. Given it’s the NHS, it may be a while before she gets your test results so having a follow-up in 2 months makes sense. Frustrating I know but that’s how the NHS is these days.

The other option if you want faster answers is to go privately but that comes at a cost. A good endo may charge £250 for an initial consultation and then the cost of tests will be on top of that. Something to be cautious of as I once managed to blow my entire private insurance outpatient annual limit of £3k with just one consultation and some blood tests (I kid you not!) And then there’s more £££ for follow-up consultations etc.

This is the NHS, I'm afraid.

Definitely worth following up.

At least they have ruled out the most serious diagnoses so that's reassuring.