Dreadful treatment for Low Adrenal Reserve

[Nico101]

Hi. I'm new here. I'm also finding treatment for LAR/adrenal fatigue very confusing.

My background is, I have had inflammatory bowel disease for 36 years, which was managed reasonably by immune suppressants. I also developed 2 damaged discs in my lower back in 2010. I was living in Spain at the time, as the weather was better for my health.

Fast forward to a Tory government intent on harassing the sick and disabled into an early grave, and I found myself so poorly through the never-ending oppression I had to go on many courses of high dose corticosteroids and repatriate to the UK.

In 2014 I began reporting symptoms of incredible thirst, craving salt and sugar, migraines, terrible sinusitis, dry skin, eyes, and ears, hair loss, outer eyebrows disappeared - classic symptoms of LAR (as I understand it's known medically). Successive GPs have told me they suspected adrenal fatigue, and I was told to avoid stress. I would love to be able to avoid stress, but the Department of Work & Pensions never gets that memo, and the harassment continues unabated.

The steroids have now given me osteoporosis and removed most of the enamel off my teeth. I continue to get dehydration migraines so severe they can wipe me out for days at a time. I was taking Dioralyte (on prescription) but after a routine blood test my GP stopped them saying my potassium was dangerously high.

I have been taking 1/2 tsp of rock salt every morning but I'm now increasing that in line with my salt cravings.

Things came to a head in July when a blood test revealed I was hypothyroid after I'd been complaining of complete exhaustion and realised I couldn't remember what day it was. I then scraped together the money to see Dr P. He diagnosed LAR and started on me on Adrenavive 2, then Metavive 1 after 2 weeks, plus Q10, Vitamin C and the Bs. I was already not having gluten due to bowel disease.

The change in my mental clarity was astonishing and rapid and within 3 days of taking the Metavive I was hyperactive (I also had severe gastro probs with it so reduced it quickly). Some arthritis-like pain in my hands went fairly quickly, too. All pretty positive...

Except the hydration issue, which of course covers so many things from sinusitis to migraines to post nasal drip.

I had some prednisone in the cupboard from a while back and started taking 2.5mgs while I tried to get Florinef or Cortef. As Dr P can't prescribe it, this meant my GP. She , as many others have reported, was NOT helpful. She wants me to do a 24hr urine and blood test and send me to an endocrinologist (which I understand will be like talking to a brick wall).

I've just found out I'll have to stop the Adrenavive for 2 weeks in order to have these tests, so have been trying to find another source of getting Florinef.

I've read Dr P's book and all the bumf he gave me and been on Thyroid.uk. It just feels like my head is spinning from it all. I'm trying to take more salt, but my blood pressure is a bit high, so i'm nervous. It's really hard to think straight with the sinus pain.

Sorry for the long-winded background, but that's about where I'm at. Does anyone have any suggestions?

I can't afford to keep seeing private doctors, either, so things seem a bit limited to me figuring this out myself.

Thank you for listening.

[Barrister]

I don’t understand why you won’t take up your GP’s offer to refer you and do further testing? I was diagnosed with adrenal failure in November - I was so ill leading up to the diagnosis that I would have had any test and seen anyone my GP suggested. You have nothing to lose but everything to gain because it’s posdible you would get a diagnosis. Clemmie

[Nico101 in reply to Barrister]

Because I already have a diagnosis from Dr Peatfield, probably one of the best metabolic specialist in the UK, and have been having treatment for low adrenal reserve and hypothyroid since the beginning of September. What I need is Florinef, but can't get a prescription without stopping my current treatment for 2 weeks to have the tests to confirm what I already know, which worries me. And god knows how long it will take to see an NHS endocrinologist, all to get a prescription for meds recommended by Dr P that would help me with the migraines and dehydration now. My GP wasn't happy I went private and has been rather difficult about it, but after 3 1/2 years with zero response from my GPs - other than advice to avoid stress - I was so ill I really had no choice. Unfortunately, Dr P no longer practises as a GP, so he can't write a prescription, himself.

[Barrister in reply to Nico101]

I’m only asking because the symptoms you are describing sound like my own and my adrenals have stopped producing cortisol completely. I was slowly dieing by the time I had a short synactin test. If you were to have a short synacthin test, maybe you would find that you aren’t producing cortisol and that it isn’t a case of low adrenal reserve but adrenal failure and you would then get your prescription. As you have been on long courses of steroids, it’s highly likely that you have secondary adrenal insufficiency. Clemmie

[Nico101 in reply to Barrister]

Thank you for the info - I can certainly ask about a short synacthin test. Is that available on the NHS, do you know?

That said, I'm pretty sure Dr Peatfield would have picked up on that - although he did recommend I try and get Florinef off my GP further down the line.

The frustrating thing is that, although I have a couple of symptoms for certain conditions like adrenal failure (like the excessive thirst, migraines, and need for salt), some of the major ones - like low blood pressure - are absent; I have quite high blood pressure, in fact. This is were I'm getting confused. And since I can't afford private testing, I'm relying on a GP who is annoyed I sought help from Dr Peatfield.

[SilverAvocado]

The problem with getting NHS treatment is that there are often hoops to jump through Being sick for 2 weeks is a massive pain, but it will probably be worth it to get access to the medication you need.

At the moment I'm looking at having a scan that will make me sick for a couple of months. When I first found our about it I was terrified and didn't think I could cope. But after a week or so of thinking and talking it over with everyone I could get, I came to terms a bit more. Yes, these things are an ordeal, but also they are temporary, and time will pass and I will get back onto the path of improvement again.

So will you, but hopefully you'll also have the medication you need, and you'll have the results of several more tests to put in a folder and know you've ticked that box and are sure that you do or don't have whatever condition you'll be tested for.

I also self medicate and have very little faith in Endocrinologists and hospital tests. But I still jump through the hoops because there are a few positives. I'd much rather be inside the NHS system to some extent even though they don't provide the treatment I need.

Edit: the other thing is that these are very long journeys. It takes a long time to get better, and a long time to even access all the treatments. There's no way to rush it.

[Nico101 in reply to SilverAvocado]

Thanks. I think I'll get the hols out the way and try and calm down a bit, then stop the Adrenavive in the New Year to get the tests done.

TBH, I think I just reached a bit of a crisis when I wrote my first comment, as the sinus and migraine were just the final straw after a pretty awful 6 weeks. I think it's just the thought of having to argue with NHS staff over treatment after so many years of having to do it with bowel disease and having NHS treatments that has left me with osteoporosis and a range of other conditions. I've spent the last 3 years researching natural treatment for that - with great success, I might add - but it has been a hard slog and I've had a mixed reaction from GPs (although their acceptance of my using cannabis oil came as rather a pleasant surprise). As you all know yourselves, when you're very ill the fight to get treatment when you disagree with the medical professional in charge of what you need, is both exhausting and depressing. The range of testing on offer from the NHS is very limiting, too.

I also have the Department of Work and Pensions on my back at the moment, so I think I've just run out of fight.

I have managed to get so much right by taking charge of my health and doing it on my own - but also I could have killed myself taking Dioralyte for dehydration when it wasn't down to bowel disease but a completely new condition I didn't know I had until a blood test for something else showed it up. That shook me up a bit.

Thank you all for your advice - it's good to know others are having similar probs to me and it's not just me going slightly mad.

[SilverAvocado in reply to Nico101]

Oh my goodness, I think the reassurance it's not yourself going mad is the biggest thing of all

It sounds like you are doing a great job, and the hard thing is you don't really get rewarded for that by the NHS or the benefits system, and its just another round of hard slog

Many people here are in a similar boat, and some are so well read and knowledgeable