Hi everyone, i've been taking LDN for about a month. What is noticeable is that i'm feeling more and more tried. I already have low cortisol could this be making it worse?. I fainted again while showering last Saturday, this had stopped since on B12 injections starting just before Christmas. Why is it back?
Any thoughts?, thanks. X
Hi Helcaster,are you taking any other meds. at the moment?
Hi beaton, thanks for replying. Yes I am, Armour, T3, Cimetidine, hydroxyzine, occasional migraleve and gabapentin, they're all regulars. X
I would get you adrenals checked again. I have Adrenal Insufficiency & low cortisol & I felt faint all the time until I got on right dose. Low cortisol causes low blood pressure & low blood sugar which causes faintness. You may need to stress dose especially around stressful times. I take 30mg hydrocortisone daily & bump it up to 60mg during holidays. It sounds like your low cortisol. It can happen anytime. Bump up your meds for cortisol see how you feel. Hot showers can drop your blood sugar fast especially with low cortisol.
Sorry to hijack this post Helcaster, could I ask please smith8577 where you managed to get hydrocortisone? My boyfriend has just been diagnosed low cortisol (Geneva saliva test), and I want to try to help him. If you can't answer here, would you mind to pm me please?
I had to see a endocrinologist to get it. Not sure where you live but some doctors like internal medicine and naturopathic dr will prescribe steroids. Until you can get him to dr Read Book Adrenal Fatigue by Dr. Wilson its awesome will help you help your adrenals. You can take adrenal cortex that you can order online anywhere.. But I do advise seeing a dr. If its adrenal insufficiency then you need steroids.
Hi.. I am new to this site,but it's good to know that I am not alone in this. I was diagnosed with adrenal insufficiency last year being told that my levels were at 1.75 when base line is 10. My organs were shutting down and had to be out on cortif 2xs a day.
I am sorry you were dx with this disease, 2x a day isn't the way you dose steroids. HC only last 4 hours in your body. Go on Facebook and Join the Living with Addison's Support Group. How much total did doctor put you on in a day? With steroids you want to take your highest dose in the morning & within 4 hours the steroids has already left your body so we dose every 4 hours. I am on 25mg a day total. I have had it for 9 years now. A Serum Blood Cortisol Test RR 4-22 at 8am you want your cortisol to be at the highest 22. Anything below 15 is considered questionable and further test are done. Mine during diagnoses was a 1.0. I wonder how I didn't die to be honest. For me the best cortisol test is a 24 hour urine cortisol test once you start taking steroids, it will let you know if your on enough or on too much. But to learn more about this disease please look up this support group. It will really help you.
Thank you for all the information. My Dr dropped me from 40 to 20 per day. I have now a pituitary tumor and wanted to see how my body would react to the lower dose. Even with high doses, I am always tired and gained at least 10lbs. I had a multi low back fusion last year that out me into ICU 3xs due to my adrenal insufficiency and had to go on massive doses to keep me going. All of this is scary. I can't seem to find a middle ground.š£
I understood that once you are taking meds for adrenal insufficiency, there isn't a way to cure the problem and have to stay on meds forever to just maintain. How can you check levels without going to a Dr and live without the meds? Thanks for all the information.
If you've been diagnosed you can't live without steroids or it can kill you. There is no way to check cortisol levels at home. Best way I do it is to check my blood pressure often. If it's low then my cortisol is low, if I'm nauseated means I'm low. To wean down that much you need to do it very slowly or you can end up very sick. I do order my own labs online about every 3 months the 24 Hour urine cortisol just to see and I don't see my Dr to do that. I pay for it myself. And I get results back online in 4 days. Blood pressure & blood sugar is the best way to keep up with it. And symptoms of course. I don't understand what you mean about checking at home & living without the meds?
Also if you've been on steroids for 2 years or less there is a chance your adrenals can wake back up on their own depending on if your primary or secondary adrenal insufficiency. But no there isn't a cure but there are things you can do to help yourself with the disease. But have to be on steroids.
Hi Smith8577, many thanks for your reply. I'm just trying Ginseng and Vit B5 for cortisol, but i'm already thinking i'm beyond that. My cortisol was 15.3 for 24 hours ranges (22-41) I just can't get my GP to take anything seriously. I've lost all my underarm hair and majority of pubic hair, despite high thyroid meds. Pubic hair and underarm started to disappear 10 years ago. I've read many times it's a symptom. I think all I can do now is trial some hydrocortisone. X
I don't have eyebrows or under arm hair either. Can you find a endocrinologist in your area? You need a acth test done to rule out adrenal insufficiency. Taking thyroid meds with low cortisol is bad news it can actually make you worse. Always treat adrenals first then thyroid. Find a new doctor. 
Doctors don't recognise Adrenal Insufficiency only Addisons which means your adrenals are kaput.
Jo xx
You're right Joanna, only when it's a 999 job i'm guessing! Xx
Doctors don't recognize adrenal fatigue. They can recognize adrenal insufficiency easy with 8am serum cortisol draw or acth test. You just have to find a endocrinologist. Other drs don't recognize it because they don't know specialize in it.
I think I may as well trial some hydrocortisone and if a miracle happens i'll tell my GP 
Stupid thing is my GP said there would be some degree of insufficiently just from the steroid injections, then did nothing!
Hello Helcaster. I am sorry that you are not feeling well. My cortisol dropped once below 25 ( range 130-600) that was blood serum, they gave me HC but I felt absolutely awful, so taking it is out of the question for me. Since then my morning cortisol improved to 400, so I think this 25 was just a glitch. I didn't have saliva stress profile. I hope you will get better soon. E xx
Hi edysia2 how are you doing? Do you mind telling what your symptoms of low cortisol were? I'm wondering if some of this is stress related as I just can't cope with any kind of stress, nausea diarrhoea, very cold shaking etc. Not very pleasant is it. I was thinking of HC short term, but when I had steroids orally once my bp shot up and I was literally without sleep for 5 days (not exaggerating at all)
So weird your bloods varied so much. I honestly think these snapshot serum tests are a lot more inaccurate to say what's going on!
Hi Helcaster. Sorry, I have just seen your reply. I am still trying to find the right dose and mix of medications, still very weak and tired, and generally not well :(.
You are right, erratic blood cortisol tests do not give accurate reflection of what is going on, unfortunately there is only a few hospitals in Uk that do 24 -h saliva tests, private test is not an option for me, I struggle a lot with paying for some of health related stuff already. I am planning to do saliva test when I can.
My symptoms were mostly : extreme shakiness, dizziness, muscle weakness, and crazy heart palpitations. It was my adrenaline kicking in I guess to carry my body through periods of low cortisol.
If you have low cortisol you won't be able to handle stress well.
Try to check your BP upon sitting/lying and standing, if it will drop 20 mmhg or more thats orthostatic hypotension which is often related to low cortisol levels. ALSO please try to go for short synachten test to rule out Addison's and check ACTH level for secondary adrenal insufficiency, just to rule out the worst case scenario . Love. E xx
Hi smith8577, I waited 8 months to see an NHS endo. I had a synacthen test done and he said because my adrenals reacted to the injection they are fine 
nothing in this test seems to address low cortisol to begin with. I was so stressed at the hospital, the test was delayed and i'm not good with cannulas. The frail elderly woman next to me had 4 staff members trying to get her cannula in, then I knew I'd be the same. How can this test be accurate in such circumstances? And it was getting on for 11am by the time it started! I reacted badly to the test, stomach cramps dizziness and nausea. The acetic acid in the injection made my bladder really painful/spasms for 1 1/2 weeks. ( I have interstitial cystitis) I wouldn't like to volunteer for a repeat. I had one appointment with the endo, nothing has been resolved. Thyroid meds aren't making much difference, and I literally have one eye open typing this i'm so exhausted. No energy until evening, my cortisol has risen then. The results certainly mirror how I feel. I told my GP, and bearing in mind I had 6 years of steroid injections into joints, that I thought, i have symptoms of adrenal insufficiency, and she just said steroids would make me gain weight!
Hi Helcaster,so sorry you are struggling. I also had the synacthen test (last Dec.) and thought the test was rubbish. I wasn't seen 'till the afternoon and was told by the endo. (Jan) the result was "normal". It took two phone calls and a distressed manner to get an answer,when I told my GP the result he was satisfied with "normal" as the numbers had gone up. The attitude of these people is beyond belief.
I have heard that LDN can affect the adrenals and I know you have other issues and meds. Also steroids can affect adrenals as well as weight. I expect you know all this and are feeling very frustrated with everything. Can you change your GP or Endo.??(I have just changed my endo. same hospital.) I do wish I could help more,thinking of you.xx
Hi beaton, that's so kind of you. Like us all i'm doing my best to improve things, but just set back after set back. I bought some licorice root yesterday, and all last night I literally lost pints of brown water from my bowel. I bought 2 pots too !
Would love to feel some improvement, it's costing me a fortune
like most of us, at least my weight is down. It will soon be a year since my last Adrenal Stress Profile, i'll get another done and report back.
Yes that synacthen test is a joke. I only saw that endo once! What was the point of that?! My hair loss was ignored and my red beefy tongue, low temps etc etc. Just told me it wasn't thyroid and to reduce my meds *scream* xx
Im so sorry your having such a bad experience. They started test to late for one. I would get a second opinion. Have you considered ordering your own 24 hour saliva cortisol test? Its $90 but well worth it. Were you on your steroids during test? Also have you checked your blood sugar during these episodes I am very curious if its low. It sounds like low blood sugar episodes.
Hi smith8577, I did an Adrenal Stress Profile last May and my cortisol was very low until the evening. The total cortisol was 13.5 (22-41)
The weird thing is my last bloods said I was prediabetic. I'm sure sleep deprivation has something to do with that as my diet is OK. I have cut out the bit of chocolate I was having maybe twice a month. Always ate whole grains but definitely too many carbs.
I'm going to repeat the test.
Thanks!
Can I just ask do you faint in the shower generally or other places as well? My mum has hot water epilepsy. Hot water (bath, shower etc) induces a seizure which may feel like fainting. In her case it was completely benign and nothing to worry about. I just thought I would mention it.
Hi punctured bicycle, it seems to be something when i'm raising my arms and exertion. Washing my hair in the shower triggers it, and when I was reaching up with a broom scraping snow off the roof of my car. I have so little energy and I often get the shakes. Thanks for replying,! Worrying about your mum. X
Bless you, don't worry about her. She had a huge battery of tests and scans to see if there was anything to worry about (neurological stuff, lesions or tumours) and she was as clean as a whistle. Among us all she is the one who can be the most sure there is nothing seriously wrong in her brain. She just has to take slightly less hot showers.
Apparently it is a very rare form of epilepsy usually seen in India. We have no reason to believe we have any Indian heritage, so I find this very interesting. Maybe someone had an Indian milkman.
Gosh, that's a weird one punctured bicycle, happens more in India? Don't think I have any Indian blood in me either.
Well your mum has had a lot of tests, and thank goodness it was nothing sinister.
I try and shower in the evening when John is around. I had a B12 injection tonight, maybe that will buck me up a bit
Yes, meant to be genetic and more common in India.
Good luck to you. I do hope you find your way out of the fainting. B12 is good for so many things - let's hope it fixes this too! xx
and Low B12 very common in India as a lot are vegetarians J x
timesofindia.indiatimes.com...
Yes you're right, but I had no idea about this epilepsy. Very hard to live with.
Just taken 2ml of LDN, now shaking, sweating and feel like i'm going to have diarrhoea again. I'm going to stop it for a few days and see if I improve. I noticed when I was outdoors yesterday I felt drunk and unsteady again. I was so out of it I walked in front of two cars coming towards me. This isn't good. xx
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