NHS Synacthen test adrenals came back abnormal nervous on treatment !!

[Smudgeypower]

hi everyone been on here a lot the last year with thyroid/ suspected adrenal problems, i had the nhs Synacthen done last week did not really think anything would come of it as its rubbish but actually got a phone call from nice lady dr that did it and low and behold my adrenals are not working properly so they must be pooped(only been telling them since had genova test dec 13 very frustrating) i have to have another blood test for the pituary gland next week to rule that out but is most likely putting me on 30mg 1st day and hydrocortisone 20mg then on both spread out through the day yikes!.

iv been trying the nutri adrenal extra for 2 months 4 a day with not much luck along with the many vitimans with dr p guidancei think they help but not to the extend of getting me well again,but the nutri thyroid has brought my free t4 levles up again with decreasing thyroxine dose a bit so it does seem to work. im feeling very nervous and scared going on steriods but as im really struggling and have no life really and i think it has to be done as the adrenals are not working ,any helpful possibly positive feedback from using hydrocortisone anyone please to give me some hope on actually using this stuff thanks for reading any help would be much appreciated

sx

[galathea]

I took hydrocortisone for two years when my saliva test showed I was at rock bottom. It made a much bigger difference to me than any amount of thyroid hormone ever has. I weaned off it and am fine now 4 years on, Because I felt so much better I was even able to stop smoking. If I had to do it again. I would have no hesitation at all.

If you are short of steroid hormones, then taking them will give you your life back. please don't worry about them.

Xx. G

[Smudgeypower in reply to galathea]

thanks so much galathea, my saliva tests were rock bottom as well. This makes me feel much better to hear from someone that has been through it, im so glad you came out the other end and got your heath back its made me feel less nervous about taking them thanks for taking the time to reply

sarax

[Smudgeypower in reply to galathea]

just to ask galathea how did you find maintaining your weight ect was it a problem as iv heard people put on weight as a side effect thanks

sarax

[galathea in reply to Smudgeypower]

Weight was fine, it stayed put, this may have been because I had the energy to move around.

Have since been diagnosed with asthma and have taken various asthma steroids...... Some of which whack the weight on.... I have now found one ... A pro hormone which is leaving the weight stable.

I haven't managed to lose any weight for years despite being very active but at least none is going on.

G x

[Smudgeypower in reply to galathea]

thats good glad you got sorted with the asthma medication and you managed to keep weight ok iv had to buy a new wardrobe as i lost so much im about what i should be now before i had a babies and im not buying another one il have to eat a few more lettuce leaves lol

thanks again

sarax

[MULLIONAIRE]

So pleased that your synacthen test showed a problem. Please make sure you find out what pituitary test you are having done next week and that you look up the protocol that should be followed. Timing and position when you have these tests are usually very important.

I like you went the private route without success. First NHS endo, will say no more. However, now after nearly thirty years of ill health have managed to get help from the NHS. Your query involves pituitary failure and since December 2012 I have been on hydrocortisone, dramatic improvement in my health immediately. February 2013 started human growth hormone, deterioration and had to have stomach problems investigated (they were causing me to collapse). Now great again as the endocrine team thought I was going into Addisonian crisis and double hydrocortisone whenever stomach/stress problems occur. It is good to feel in control of what is happening to my body at long last. I am now taking 15mg hydrocortisone at 7am, 5mg at lunchtime and sometimes another 5mg at 5pm. Good luck

[Smudgeypower]

thanks mullionaire for your reply glad your in better health and got sorted fingers crossed it will help me feel better fingers crossed

sarax

[shaws Administrator]

Sara, I am very pleased you've had a positive outcome from your Synacthen test and hopefully you will now be on your way to a full recovery. You've had a very bad time for the past few years and deserve some positive news.

Galathea's responses are very positive too.

Good luck.

[Smudgeypower in reply to shaws]

thanks shaws for all your support fingers crossed this will help get my life back yey!

sarax

[shaws Administrator in reply to Smudgeypower]

Yes fingers xxxxxxxx

[sulamaye]

I've just got my Genova stress test back and everything is red, my levels are on the floor. Three years ago wen my m.e was at it's worse only my dhea was low. I m wondering if your Genova tests looked anything like mine, but I suspect my adrenals are trashed by the GP slashing my thyroid meds. However, any advice about how u got NHS test and what your stress test was like Wd be really helpful. Are they diagnosing you as addisons?

[Smudgeypower]

hi sulamaye mine were all pretty red apart from night time it sounds like you have found your problem and if yours a worse than mine you def got adrenal problems as mine are pooped ,i had to ask for the test through nhs endo i had to push for it though he was not helpful at the time my genova test showed adrenal exhaustion in explanation box here are my results from dec 13 genova

sample 1 post awakening outside range 10.9

sample 2 +4-5 hours 5.1

sample 3 +4-5 hours 2.4

sample4 prior to sleep 20.1(feel best)

dhea am 0.06

dhea pm 0.06

ratio dhea0.27

hope this helps to compare them might be worth taking the results along to a endo and persist that the nhs adrenal test needs to be done to rule it out at least as you are struggling i would reccomend dr peatfields book how to keep you thyroid healthy and how to stop the thyroid madness to get some info really useful and will b a handy guide for years to come hope you can get some answers

sarax

[sulamaye in reply to Smudgeypower]

Thanks Sarah, I am just back from holiday - if only one got a holiday from one's body! - and will dig out my stress test to compare, I will post my tests in a new post. I had that NHS test done when I was first diagnosed with M.E, but it came back normal and to be fair I also had a genova stress test done around that time and it came back as DHEA low, so it is upsetting to see how my adrenals have crashed in the last 3 years, despite spending 50% of my day in bed, lying quiet, and avoiding all stress as my more partner has to deal with it now!

[Churchie]

Hi Sara

Please could you tell me what this test involved and did you get a reaction at the time to know there was a problem? I am due to have this test next Friday and strongly feel that I have adrenal problems. For the past two months I have been following dr p's advice with nutri adrenal extra and nutri thyroid but have stopped it 4 days ago as I wanted next weeks test to not be influenced by any supplements. Definately feeling their loss.

What is the diagnosis now that the doctors have agreed there is a problem?

I would be grateful for any advice as bit nervous about the test.

X

[Smudgeypower]

hi churchie the best info is on the nhs website just type in addisons and under diagnosis tab and says about the test ,

im not very good at explaining it sorry but from what i remember the test lasted about 4 hours and they took samples of my blood every half a hour and glucose levels then they inject Synacthen at intervals i was not aware of how the test makes you feel before but it made me feel off color after the 2nd lot of synacthen went in, very woozy and light headed and had to close my eyes and lay back its is the only way to describe it, this is the norm though so please dont worry as its triggering stress to make your adrenals respond it was not that bad just a bit odd and you know why it happening.

if I can do it you def can so please dont worry, i did very well appparently i started to feel normal by the time the last blood was taken and left but not a same as when went in and it took it out of me for the rest of the day more than normal and needed some sugar/food so maybe take a banana or bar of chocolate , but as my adrenals are not right thats most likley why i felt off, i had a phonecall from doctor few days later and all she said that my adrenal levels did not respond as well as she wanted and they were putting my on hydrocortsione so thats all iv got but a letter on the way, so might know a bit more soon im guessing borderline addisons as she did not mention it but i have another blood test before i start treatment for my pituary gland to rule that out. just make sure you dont take any medication supplements food after 9pm the day before i was still taking the nutri adrenal until the day before and it obviously did not affect the test as it came back abnormal but you dont want to go in on your best day so maybe excluding the adrenal support for short while might help with the test as your adrenals are less supported maybe hope this helps

sarax

[Churchie in reply to Smudgeypower]

Thanks for this. I stopped the supplements a couple of days ago so they will be completely out of my system by Friday just in case they interfer with the result.

You mentioned feeling woozy - were you ok to drive. I was planning on driving myself to the hospital and back

Thanks

Ps thanks for the tip re taking food.

[Smudgeypower]

iv not been so well with it all so my partner took me and picked me up you will prob be fine and hospital prob sort sandwich or something i prob could of managed worst case to drive home best of luck

sarax