Firstly - thank you all. I'm not (yet) diagnosed with lupus but my GP and I are pretty convinced that's what's going on. I've found the posts so helpful. I feel less alone and can make sense of some of what's happening because of your posts.
I've just been told by my GP that my "adrenal glands are just about knackered" her words! Her words - I find her frankness great. I have an endocrinology appointment coming up but my local trust just use clinical team rather than specialists. Any advice prior to my appointment - I have a feeling that many of you will know much more than the clinicians.
Best wishes to you all
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Polly2Cats
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Have you looked into Addison's disease Polly2Cats? It is very rare but basically is complete adrenal collapse. My good friend has it and it's another autoimmune disease. Her main consultant is an endo but she also has B12 injections for PA and seems to be developing Sjogren's now too. Her main treatment is a high dose of cortisone but she also has osteoporosis. Best of luck with your appointment.
Hello polly2cats (great name: hello to your cats!)
Twitchy's reply hits the spot!
I haven't got much to add except to say I'm glad you're here & have a really good GP... I hope you'll keep us posted while you go through these investigations...adrenal insufficiency is an important topic here for obvious reasons...and especially interesting in someone who hasn't got it due to years of treatment with oral steroids (prednisolone etc)
I'll only add a story that reflects the resilience characterising some versions of adrenal insufficiency:
my husband's adrenal insufficiency was mainly due to 30 years on daily prednisolone. When his disease (crohns) finally seemed in remission, he decided to try coming off pred very gradually via a long taper...once off, he had adrenal insufficiency...endocrinology told him his gland would never function again & he must take treatment for that, but he refused...and instead, with his crohns consultant & GP's help, he worked out a plan which basically involved little bits of pred while he vvvvv slowly gave pred up again altogether...they stuck to this plan despite quite a few quite unpleasant aches & pains + fatigue... and 2 years later his adrenals were in action again. That was around 2005. Despite those decades on heavy meds while undergoing several major bowel resections & then the adrenals scare, he has spent the past 6 years solo planting a 37 acre wood from scratch with 20,000 trees...during this time he turned 60. His adrenals are thriving. His crohns is in remission. Some success story👍
So, I'd hope that whatever the cause underlying your adrenal insufficiency, you & your medics will be able to either get your gland working again, or design you a treatment plan that REALLY works
What a fantastic end result for your hubby and standing ovation for him for going through so much and achieving such a lot. It takes a strong character to keep believing and pushing like he obviously has - great respect!
It's fantastic to know there are alternative ways to tackle these things rather than blindly following the professionals
Thanks so much for sharing this and good health to you and yours.
He obviously has his heart in the wood project and this helps, too.
I found things that I enjoyed doing and gradually increased my physical activity because at first I was unable to do anything because of the fatigue.
I, too, was diagnosed with Crohn's and my weight fell to below 6 stone, but I could take no more drugs nor have more surgery - everyone thought I was going to die, but that wasn't my intention if I could help it.
I had basically been overdosed by the wrong drugs and, of course, this caused a loss of faith in the conventional system. Homeopathic treatment helped me, though, which I was referred to Bristol for by my GP.
I feel so sorry our system here in England has decided to throw homeopathy out of the NHS having been in the NHS since 1948. I still use homeopathy and wonder why India and now Switzerland have put homeopathy on such a high footing while here in the UK we rely so much on drugs that often damage and don't work for many like me and have discarded homeopathy.
It does seem that even many of us patients think that only pharmaceutical interventions will help and that they must be so much better than any natural remedy. I'll literally try anything!! 😉
I was diagnosed with adrenal exhaustion in 2001 amongst others.
It was a long way back for me and I still have to be careful.
I found I could take no drugs and my GP agreed with me, but I had a lot of help from complementary practitioners including homeopaths, a nutritionist, a kinesiologist and natural healers.
I had been on steroids for six years before this and then had complications with surgery and other drugs, that wrecked my body basically and I knew I had to go with my body and give it what it needed to recover.
It is extremely difficult to recover from adrenal exhaustion and as far as I have experienced there are no wonder drugs to right the damage, but with the right approach one can get back to a relatively normal life again as I have, but even anaesthetics for dental extraction affect me, as it did after the 9th March when I had an extraction and this was followed by flu - like symptoms, rashes, bleeding from the skin, bleeding/sore nose, fatigue, fogginess, etc. Gradually I have been recovering, but I use muscle testing that I was taught in 2001 by a good kinesiologist to see what my body needs and can take.
My advice is just be careful what you take because my GP said hormone treatment can be damaging unless you get the exact one and amount you need. I worked to rebalance my hormones with mainly good organic plant foods and changed my diet and lifestyle including my attitude to life generally.
I took the advice of the nutritionist, but the hospital dietician didn't have much idea and that is why I knew I needed to go privately and luckily, I had some savings at that time to pay.
All the best at the appointment and let us know how you get on, as things may have changed by now regarding adrenal exhaustion, as they are all the time for everything it seems.
Yes, I wouldn't touch HRT. My GP wondered if it could help with the severe hormone imbalance, but my platelet count was extremely high and I worried about a thrombosis and refused to have it.
I tried natural progesterone, but that made me really bad, so stopped that - don't be fooled by the 'natural' bit in its name - it isn't.
You will get there - look forward to your future posts. X
I've been wondering about the hrt and why I'm bothering. I'll talk to gp about getting off it. I think the less I'm taking the better. The only other thing I take at present is thyroxine but I have a feeling that's about to change!
A GP told me in 2009 that I needed to take Levothyroxine for the rest of my life for hypothyroidism. I told her that I wasn't good on synthetic drugs. She said if I didn't take it, she would give me two years and I would be dead with heart failure - which obviously scared me into agreeing.
I was about to put the first pill in my mouth when something extraordinary happened - I heard a voice say 'Are you really going to be that stupid; have you learnt nothing in the past 10 years' - I was astonished and I got the instructions out and read them and one was 'do not take if allergic to lactose', which I am.
I contacted the GP and she said that the small amount wouldn't affect me. Of course, I couldn't tell her about the voice.
I changed GP's and I told the new GP what happened - the same surgery - he said he understands how sensitive people like me can be very badly affected by even the smallest amount of lactose or anything we are allergic to.
He referred me for homeopathy and I have been using homeopathic Thyroidinum and Iodum, but don't need it much now. At one stage the homeopathic doctor said my symptoms were more like hyperthyroidism than hypo, which equates with Hashimoto's disease, which many lupus sufferers experience.
I just wanted to demonstrate how little some doctors know, whilst others are so knowledgeable.
In the end we each have to decide what is right for us.
It's possible your adrenals aren't producing the cortisol they need to be and you may get tired too easily, even all of a sudden without much warning. Have you had a lot of steroidal injections or oral steroids or corticosteroids for pain? That can lead to adrenals getting lazy and not producing these same substances because you're intaking them orally so why produce them in your body? You can find that you have temporary adrenal insufficiency for a period of time before your adrenals restart to produce the steroids and cortisol and so forth that they should be producing. This can take the better part of a year.
Some endocrinologists might not want to tell you this is what has happened so you have to read between the lines. It's similar to Addison's disease except this is temporary only. A simple test can be done in the office that takes 1 hour to determine if this is your problem. Are you saying that you won't see an endocrinologist? I doubt too many other Drs. would figure this one out. When I had adrenal insufficiency my GP asked that I wear an alert bracelet/necklace because in case of an emergency and I was unconscious, normal procedure in an ER could cause me great harm if they didn't know about the adrenal insufficiency. I suppose you can just be alert to ask the right questions if it comes to this diagnosis for you. You may not have this at all. Best of luck to you.
Thanks for you reply it's helpful. I have never had steroids apart from some ointment years ago so it can't be that that has caused this. Doc thinks it could be another auto immune thing. I am going to see the endocrinologist BUT in my local area they are generalists rather than pure endocrinologists so any tips like the ones you've given me about kick starting things are really helpful ... For warned is forarmed. We wait so long for these appointments I want to make sure I get the best out of them and I'm not afraid to be pushy to get it.
I have been finding in generally very fatigued but on occasions if I do a bit too much I just flop - complete exhaustion. Apparently I go totally white too. Wonder if this is getting close to a collapse?! It's like the Duracell bunny when his batteries go everything slows completely.
You do sound like how it was for me when I had adrenal insufficiency. You reach the end of your energy and just flop into unconsciousness. You have a couple of minutes to find a place to flop safely. But after sleeping a couple of hours I would be re-energized and able to continue on. That was the extent of my collapse..no bigger, more terrible collapse to fear, even according to my endocrinologist. I hope it's the same for you.
I'm a bit worried about collapse. I've not done it I just go a bit floppy. I'm hoping it won't come to that. I'm being extra careful until I see endocrinologist next month!
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