Adrenal / aldosterone issues - blood tests or private endo?

[steviep43]

Hi all

I've had lots of issues which are well documented on these pages over the years - to sum it up, Chronic Fatigue / M.E is the only 'diagnosis' doctors can attribute, as all other suspects have been ruled out through blood tests.

I've been fighting for a long time to get referred to an endo as all my bloods come back normal and referral isn't easy unless they show something. Finally I got a referral but after waiting months it has now been cancelled. I am at the end of my tether and need to go privately to get whatever is wrong sorted. My bloods/diagnosies have only ever shown:

-meibomian gland dysfunction (dry eye)

-weak immune system (IgM and IgA deficiency)

-rheumatology and immunology had no explanation for any of my other symptoms and sent me away.

I have 'proof' now that some of my symptoms have something to do with salt / electrolytes and fluid balance. I have to take in a lot of salt (10g minimum per day) and restrict fluid intake to no more than 2.5l sipped slowly (not downed) per day in order to maintain my health to a manageable degree. It's surprisingly difficult to manage but is worth the effort.

I therefore believe that I need my adrenals checked, particularly aldosterone levels and DHEA, both of which directly relate to one of my symptoms (meibomian gland dysfunction) as I can make this better or worse by adjusting water and salt levels. I therefore suspect I may have hypoaldosteronism as a lot of the symptoms are what I have. GP can't test for them as I've asked, so an endo needs to which is why I'm so frustrated that my appointment is cancelled. I have had cortisol and salt levels checked before by the GP and they were 'normal' (although I didn't know my salt levels were being checked and I was taking 12g a day at the time which probably skewed the results). Thyroid and other main suspects have all come back as normal.

So my question is - am I better off paying for private blood tests myself through Blue Horizons, then going back to the GP with the results, or should I just pay to see an endo privately and have them decide if I should have those blood tests? I am wary of the difference in cost of both....

Many thanks

Steve

[Nico101]

Hi Steve,

I have the same problems but was told to take 1/2 teaspoon of salt with 2 1/2 glasses of water 4 times a day. I also take 2 sachets of Dioralyte during the night. I still get dehydration migraines, though, so if you've managed to cope with this, would you mind posting your routine. Despite me taking all this salt and water, I am still always thirsty and slightly dehydrated. (I did try reducing the salt then increasing it, and the same with water, but can't seem to get the balance right of late).

Cheers,

Nicola

[steviep43 in reply to Nico101]

Sorry to hear that. There seems to be no magic solution but I have found that little and often is best. My body does not cope with glugging a glass of water at once, I have to sip about 250ml every 90 mins or so.

[Nico101 in reply to steviep43]

I have to thank you massively. I was getting thirsty and feeling awful and thought I needed to keep upping my salt and water. I took a huge leap of faith after reading your post and put 1/2 tsp salt in a litre of water and kept drinking it throughout the day. I did that twice a day and felt a lot less thirsty. This caused me to reevaluate other habits I'd got into - like eating grapes all day to counteract the dry mouth. I realised I also had and insulin problem and cut out my nightly Dioralyte (1/2 a litre of it) and switched to slightly salted water and drastically cut my carb intake (in prep for going keto). The difference was immediate!

This brain fog is so annoying. You get into habits and forget you've done it.

Now slowly reducing the salt in my daytime drink and take a flask of salt water to sip when I'm out. I feel MUCH better on this regime and with the knock-on effect of reevaluating my carb situation I've got more energy and haven't had a migraine since I changed to this routine. Thank you once again.

[caledoniancat]

Have you been checked for Addison's disease? Might be worth suggesting an ACTH test.

[steviep43 in reply to caledoniancat]

Interesting you should say that. I have booked with a private endo and got a copy of all my GP notes and results yesterday to take with me. Advice was given to test for ACTH and do another AM cortisol (it was 280) but that was never followed up. So I am not best pleased that this wasn't followed up and I'm having to pay but at least I may get answers from this approach. Thanks.