I'm really finding it hard to take in all the info on here - esp the technical stuff. The brain fog doesn't help, of course.
I need blood tests for another condition and wanted to ask what else I should ask for to try and pin down things like B12, ferritin levels, and that kind of thing?
Dr P diagnosed adrenal insufficiency about 20 months ago and put me on Adrenavive for 2 weeks then introduced Metavive (smallest doses). I responded very well until the DWP began a punitive round of assessments that have stretched to 18 months of harassment. This wiped out all progress.
I last spoke to Dr P about 15 months ago (I am on a very low income, so couldn't see him more often) and he told me to increase the dose and monitor how I felt, to take cortisol in the form of 5mg prednisone, and drink salt water up to 2 tsp Himalayan rock salt per day.
My GP is useless - nice, but the standard fare others on here have experienced.
Forward to now and I don't know if stress affects the adrenals after the fact, because when I survived the worst of the DWP (stopping my benefits over the summer last year) I wasn't too bad. It seems like the worst has hit me since about December last year. Has anyone else experienced that? That the effects of massive stress present much later on?
Anyway, I have an appointment to see an NHS endo in June. I feel so ill I need to make this really count. Aside from my question about what else to ask for on my GP blood test, what else should I have tested with limited funds? The saliva cortisol test seems to come up on here quite a lot. I take it that is the most important one?
I really struggle with hydration - I currently cannot hydrate to a decent level no matter what I do. As the result of getting it wrong is a severe migraine, I don't like to change my salt intake too much, but worry things have changed since I spoke to Dr P and as many of you probably know now, he is no longer working.
I have seen mention of a hair mineral test on this site. Could this help with identifying a mineral imbalance? I am concerned I may not have a good balance of potassium and magnesium (another thing I picked up from this life-saver of a site).
If you could only afford a couple of private tests, which 2 would you go for in my situation?
Do you guys have a preference between Genova and Blue Horizon?
Thank you so much for the help.
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Nico101
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Hi, I see you are waiting for replies after 2 weeks so am replying even though am no great expert!
Do you take a multivitamin? While I am in between tests, I take one to hedge my bets. I have never had any of the private blood tests - I just rely on eventually finding a GP who will listen, knowing that they will only test for a few things.
Yes, on stress and delayed effect.
The things that i’ve been tested for by my GP that made a big difference to my health when treated are: Vit D, folate, ferritin.
I dont think i’ve been tested for B12.
If you were to exaggerate your symptoms to the GP at all - tell them how it is on your worst days, as opposed to the better ones, say, and explain (if you are hoping to go back to work / achieve any other life goal) how the brain fog affects the chances of doing that, would that have an effect? Or if you take a friend / parent along?
I know how you feel about having GPs who don't listen and have had to fight for everything, too. I book appointments with the ones I find half friendly and ignore the rest. And dig my heels in as much as I can. Crying helps - not that I have ever planned to cry!
I found going gluten free helped a lot with the brain fog. I often don’t follow it, as I eat what my children do mostly. Have you tried it?
When I do GF I don’t do it the health shop way and buy lots of expensive stuff, I just eat a lot of rice, potatoes, GF pasta and tins of beans in place of wheat (I don’t much like GF bread on the whole). It doesn’t work out as being more expensive than eating wheaty things, in my experience, as long as you plan ahead.
Weirdly, I find that drinking caffeine helps my headaches.
I am guessing that your question about best blood test provider has been asked before so search the site for answers pertaining to blood tests, if you haven’t already.
Well, 2 weeks is a long time, and since this post I've had help on a few things. I've regulated my salt intake better and realised my migraines seem to be partly inability to hydrate properly and the rest is poor insulin regulation.
Regarding gluten, I've gone much further than that and have now been 3 days fully Keto. I drastically cut down my carbs and only had spelt bread for about 10 days until it was gone (at nearly £3 a loaf I wasn't giving that away and I had loads in the freezer as it's hard to get). At the same time as my new salt regime, I also cut out the nightly Dioralyte drinks I thought I needed to hydrate and stave off migraines. The effects were instant. The next day I felt a lot better. No wanting to go back to bed at 3 in the afternoon and more energy.
I do take additional supplements - especially lots of vitamin C and D3 - and have a very good organic diet.
I, too, find caffeine helps with migraines... however, this causes more for me further down the line, as it makes me more dehydrated. Also, as my main issue is adrenal, I'm not meant to have any caffeine at all. But the best painkiller I found were the ones with caffeine in them, so a vicious circle.
I haven't had a migraines since changing my salt regime and cutting right down on carbs. I'm hoping now I'm fully keto this will stabilise my insulin - although this seems to have happened already.
I posted about testing elsewhere and was given the info I needed - I have my tests here and ready to go.
I finally seem to be getting my head round this - but very slowly. It's all very complex, isn't it?
A huge thank you for taking the time to reply to my post. It's very much appreciated.
The saliva cortisol test seems to come up on here quite a lot. I take it that is the most important one?
Adrenals are complicated. If you asked a GP to test your cortisol the best you would get is a single blood test first thing in the morning. If you ever had such a test I would suggest you do it having fasted overnight (apart from water), and have the blood taken for the test between 8am and 9am. Don't exercise and also avoid stress beforehand, and talk as little as possible before the blood is taken. If you usually take anything which affects cortisol such as prednisone you should delay taking it until after the blood test. The following lists contain supplements and prescribed drugs which affect cortisol, either by increasing or decreasing it. To find out which substance does what you would have to do your own research. Some of them would be dangerous to stop suddenly e.g. anti-depressants or anti-anxiety meds, so you have to do what is possible without putting yourself in danger or ruining your quality of life. Read the blurb in red (and the other bits) on the STTM page.
The problem with all the above is that a single blood test isn't very informative - it only tells you what is going on first thing in the morning and yet cortisol changes throughout the day and night. I would suspect that high cortisol at bedtime is one of the commonest causes of insomnia in the world, for example, and yet a blood test at 8.30am won't tell you anything about what happens at bedtime.
The other big problem with a cortisol blood test is that the blood test measures only "total cortisol" i.e. cortisol which is free plus cortisol which is attached to transport proteins. It is only free cortisol which is available for immediate use in the body. Note that saliva tests measure only free cortisol. As a consequence of this the results of a morning cortisol blood test and a morning cortisol saliva test wouldn't necessarily give the same results.
Doctors rarely, if ever, pay attention to saliva tests so if you were to do one of these tests it would be for your own benefit. The best one available is the one by Regenerus Labs :
I have seen mention of a hair mineral test on this site.
This is my personal opinion... I wouldn't trust a hair mineral test at all and I would never buy one. I am convinced the results would be distorted by pollution in the air, and chemicals in shampoo, conditioner, hairspray, gel etc.
There is really very little point in testing magnesium levels. The tests available for it are poor and unreliable. Your body needs magnesium in the blood stream as well as in the cells of the body, but it prioritises keeping enough in the bloodstream. So, you could do a blood test for it, which shows you have adequate magnesium in your blood stream and yet still have very deficient cells in the body.
As long as your kidneys are still functioning reasonably well they will excrete any excess magnesium. I would suggest supplementing with 250mg - 400mg magnesium per day and see whether you get any benefits from it.
if you want to choose a magnesium supplement there are lots to choose from - it can be sprayed on the skin, put in the bath as a soak, sold as a powder which is put into water and drunk, it can be sprayed into the mouth, or taken as tablets. Different forms of magnesium supplement also have varying levels of absorption possible. So, you have to choose for yourself which one appeals to you and then take it in an appropriate way :
Thanks. I already use a good magnesium spray, which as you say, would probably distort the results of a blood test. I'll leave off on that one for now, then.
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