First of all can I apologize to anybody who has answered any of my posts and I haven't got back to them. I'm really sorry and I do appreciate any answers that I get. I was diagnosed with adrenal insufficiency by my rheumatologist in August after a long hard fight and put onto emergency level of hydrocortisone 50 mg for my own safety until I I got an emergency appointment with the endocrinologist. I then got reduced to 40 mg as it was way too high. Where I live we are quite short on specialist and I still haven't seen the endocrinologist but I am seeing them on Monday morning next week. I have waited all this time to see the specialist with the only other option of actually getting admitted if I felt bad enough and then would get to see the them. I'm already very poorly before I've started with this and this has been going on for a long time and being misdiagnosed as my other illnesses. I knew there was something wrong and now we know what it is apart from my usual illnesses. So I am yet to find out if it is primary or secondary. Something that is is really bothering me apart from I feel absolutely horrendous all the time is that in the early hours of the morning and then actually at time for getting up and for the next couple of hours my stomach is churning and churning with butterflies as if I'm terribly terribly nervous. But also I'm actually shaking almost as if the type of feeling you get if you go without food that type of feeling. it generally goes off towards dinner time. It's really debilitating to the extent of not being able to get out of bed in the night. and then in the morning when I get up I'm shaking and jelly legs and my insides feel like they are churning. I only sleep for a couple of hours which is something I've done for the past 18 months which is one of the reasons I had for knowing that there was something going on other than my usual problems. can anybody throw any light on this shaking and horrible churning inside ?
Adrenal insufficiency - jitters/shakes in night... - Thyroid UK
Adrenal insufficiency - jitters/shakes in night and morning
Are you also hypothyroid/Hashimoto's
If yes, what are your most recent blood test results and ranges for TSH, FT3, FT4 plus vitamin F, folate, ferritin and B12
How much Levothyroxine are you currently taking?
Thanks for your reply. I don't know a lot of things I have been trying to get diagnosed with something for a long time as I said apart from my usual illnesses. I won't go into too many details as as I am in the process of making a complaint. But I was found to have low cortisol back in February and wasn't told for 3-months. I then fought and fought to get anywhere at all and eventually had synacthen test which confirmed I was adrenal insufficient. I found out my folate and ferritin were rock bottom but wasn't actually told that for 2 months either. I've thought for ages that there was either thyroid or something but have been told that my thyroid isn't a problem but that was last year. So I am not being treated for anything to do with thyroid or similar. I may sound a bit vague but that's because of the way I have been diagnosed and also misdiagnosed. I have just been passed off over and over so haven't had the tests i should have. As I say I won't go into too much detail about that. But i do see the endocrinologist this monday I have been on prednisolone for a lot of years and I've also had IV steroid infusions in the past.
I'm really sorry to read you are feeling this way. I kind of know the feeling you describe, its waking me up in the early hours and yes for me it does feel like a blood sugar dip that is sending into a fight/flight type reaction, and makes me feel I cant really cope with much else, whilst feeling that way, so I can fully understand what you're saying. A very small thing happening on top of feeling like that feels like a major disaster as if I haven't got the strength in my system to deal with it. It does feel like you haven't eaten for months!
In terms of what causes it I wish I could be more helpful! Mine seems so have worsened recently and Ive just discovered my ferritin levels have lowered, MCH has gone overange-indictating my functional b12 def not being treated properly and my FT4 which was 16, with a borderline underactive thyroid has now dropped to 11. So in my case I think that it is most likely linked to thyroid and that it is triggering some kind of adrenaline/blood sugar/anxiety type response, as like you it does seem to ease as the day goes on, although nowhere right.
As SlowDragon suggested does there seem to be any issues with those blood results?
Wishing you well...
One of the functions of cortisol is to bring sugar out of storage, to keep your blood sugar topped up. This explains the ravenous hunger. It can help to eat small meals throughout the day so that as often as possible you are operating on the food you've just eaten instead of relying on stores. This applies during the night, too.
in the early hours of the morning and then actually at time for getting up and for the next couple of hours my stomach is churning and churning with butterflies as if I'm terribly terribly nervous. But also I'm actually shaking almost as if the type of feeling you get if you go without food that type of feeling.
In a healthy person the production of cortisol has a circadian rhythm. See this link :
trmorrisnd.files.wordpress....
Cortisol production is at its lowest late in the evening and throughout the first part of the night. Then around 3am - 5am or 4am - 6am (depends on your normal sleeping habits and body clock) a healthy body will start raising cortisol production fairly dramatically. Cortisol levels reach maximum at around 8am - 10am (again, depends on body clock and sleeping habits). Then cortisol levels slowly drop over the day and part of the night until it again reaches minimum, and then the cycle repeats. Blood tests for cortisol are usually timed to try and find out the patient's maximum cortisol level.
There could be several reasons for your jitters, and you would need testing to find out which applies. It depends partly on whether you produce any cortisol of your own or not. Since you are on HC your own production of cortisol will probably stop fairly soon, if it hasn't already.
If your own cortisol production + the HC you take gives you too much cortisol in total then this can cause jitters and other symptoms when the body's demand for cortisol is highest i.e. when you have the symptoms you listed. You can have too much of a good thing.
If your own cortisol production + the HC you take gives you too little cortisol in total then this can also cause jitters and other symptoms when the body's demand for cortisol is highest i.e. when you have the symptoms you listed.
There is a lot of overlap in some of the common symptoms of low cortisol and high cortisol, so testing is essential.
Another thing to consider is whether your dosing of HC needs to be changed or split, or split differently to what you currently take. The timing of doses will also affect how you feel.
I've never taken HC and I don't have severe adrenal problems, so I'm not the person to answer about split dosing. There are several factors involved - how many doses to take, and how big the doses should be. (Split dosing doesn't result in all doses being the same. You need more cortisol first thing in the morning than you do in the late afternoon, for example.)
I agree with a lot of what Humanbean says, dosing can be quite individual but what you are describing sounds like low cortisol to me. I have secondary adrenal insufficiency & am on 30mgs of Hydrocortisone (HC) Many endo's suggest that you take it twice (very out of date method!) or 3 times a day, they also try & tell you that if you take it too late in the evening it will keep you awake, however this is also outdated information! A research study was done many years a go when patients ere given 100 mgs of HC & of course they stayed awake al night, however our dose is much smaller so this isn't the case, sadly the information got put into textbooks without any evidence behind it. HC ony lasts in the body for between 4-6 hours so if you take your last dose around 4 or 5pm & then your next dose around 7am you are going nearly 12 hours without any or hardly any cortisol in your body which may account for how you feel. I actually take 2.5mgs just as am gong off to seep & finds this helps me to sleep & keep my levels high enough through the night. The other thing to be aware of is to take your first dose at least 30-60 mins BEFORE yo get up so that it gets into your system & you can then function. How much HC are you on & how do you split it now?
Im taking 15mg an hour or so before getting up, 15 at 1pm and 10 at 6.30pm. My cortisol was very low on my synacthen test, so im wondering the same, if my levels are so low its causing the shaking and jittering when i have no cortisol in my body at all in the night and start of day.
How do you feel during the day? it might be worth taking a bit off one of your doses & taking it before you go to bed. If you are on FaceBook it's worth joining the UK Addisons info & support group as there are lots of people on there with a lot of experience. Many of us take our HC dosing by the circadian cycle so smaller doses but more often during the day, so I split my 30mgs into 5 or 6 doses taking some every 4 hours, it seems to work for me. Do you feel that your Endo has enough experience of adrenal insufficiency? Many of them are used to dealing with diabetes rather than adrenal issues, so it can be worth going to one that does have experience. if you'd like to find one that does then do message me as I can point you to one that does. Have a look at this lnk which explains circadian dosing cahisus.co.uk/pdf/CIRCADIAN...
Many people who are hypothyroid for long time can end up with low adrenal levels
Looking for the original cause of low adrenal levels
You need FULL Thyroid and vitamin testing
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
20% of Hashimoto's patients never have raised antibodies. If you don't have high antibodies ask for thyroid ultrasound scan
Not what you're looking for?
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