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Hi Ema i got in contact with a CAH charity and saw a Dr they recommended 2 days ago.
He was a very nice Dr, he doubted I had CAH but said Adrenal Fatigue from an early age is possible and something he believes in and has offered me support. He talked about how I will have to manage these symptoms while still taking the steroids and talked about working together with pshycologists and other doctors to manage the symptoms...these symptoms are LIFE ruining, i cannot go forward like this feeling mentally ill and so very vunrable at times, but before the steroids I had no life anyway because I could hardly get out of bed but never experienced such weird feelings nor depression nor these disturbing outbreaks where i cant stop crying aggresively, getting so emotional.
He talked about Dexamethasone and was highly concerned this would make me worse because its stronger and would lower other hormones too low (- I got the impression he thinks this has been causing the sides), which it could but i believe I could be reacting badly the drug compound of medrol/pred itself rather than its effects on other hormones, so I will try Dex, I feel I have to do something very soon im in such a mess.
If it was the Florinef I wouldnt still be having appetite problems 9 weeks later I guess? the reason I kept taking these steroids so long without making changes to them is because after weeks passed by things would get less weird or my mental state would change a lot even if things still felt strange and artificial, its hard to explain really, but it kept me thinking "oh, i must be getting better"
Since switching to 8mg of Pred 3 weeks ago i dont walk around the town aimlessly with this crazy energy as much but still feel very wrong, I wake up every morning feeling sick and cannot eat untill late in the day, many days I wake up thinking
Ive been taking slow release potassium pills and my recent elytes panel showed sodium at 144 and potassium at 4.2 so they dont look bad at all BUT if I dont eat well on a certain day I will have poor elytes but its so hard when your appetite is supressed, ive had a massive appetite all my life untill these drugs.
Life feels more real since going from Medrol -> Pred but things are still very very wrong.
Ema I know this sounds like a stupid question but did Medrol make you feel detached and did things feel disturbingly different and almost 'unreal'
Do you not take steroids anymore Ema? when you took Dex alone how much did you take? I REALLY wished HC worked for me - i had no sides, although I never did try cortef just a generic brand called 'douglas' not sure if that would make a difference in stregnth.
Thank you for all the help.
P.S
I am doing a full hormone panel next week but I really doubt this is hormonal rather than caused by the drugs. For example if i had a testosterone defeciency wouldnt the symptoms be consistant? its asif my brain became more adapted to the drug as time passed and some mental aspects got easier - another reason why I considered it must be the florinef just 'wearing off' but no appetite 9 weeks later from florinef? seems very unlikely doesnt it, especially seeing as some days it can be better than others, ocassionally i will have 2-3 days of a normal appetite only for it go bad again. It still blows my mind how these drugs have given me such artificial nervous energy. 2 week ago i went on a 5 hour walk and didnt feel tired but felt very drugged. It doesnt make sense for someone who is hypo to be able to do that, infact none of my healthy friends could or would do that.
He was a very nice Dr, he doubted I had CAH but said Adrenal Fatigue from an early age is possible and something he believes in and has offered me support. He talked about how I will have to manage these symptoms while still taking the steroids and talked about working together with pshycologists and other doctors to manage the symptoms...these symptoms are LIFE ruining, i cannot go forward like this feeling mentally ill and so very vunrable at times, but before the steroids I had no life anyway because I could hardly get out of bed but never experienced such weird feelings nor depression nor these disturbing outbreaks where i cant stop crying aggresively, getting so emotional.
He talked about Dexamethasone and was highly concerned this would make me worse because its stronger and would lower other hormones too low (- I got the impression he thinks this has been causing the sides), which it could but i believe I could be reacting badly the drug compound of medrol/pred itself rather than its effects on other hormones, so I will try Dex, I feel I have to do something very soon im in such a mess.
If it was the Florinef I wouldnt still be having appetite problems 9 weeks later I guess? the reason I kept taking these steroids so long without making changes to them is because after weeks passed by things would get less weird or my mental state would change a lot even if things still felt strange and artificial, its hard to explain really, but it kept me thinking "oh, i must be getting better"
Since switching to 8mg of Pred 3 weeks ago i dont walk around the town aimlessly with this crazy energy as much but still feel very wrong, I wake up every morning feeling sick and cannot eat untill late in the day, many days I wake up thinking
Ive been taking slow release potassium pills and my recent elytes panel showed sodium at 144 and potassium at 4.2 so they dont look bad at all BUT if I dont eat well on a certain day I will have poor elytes but its so hard when your appetite is supressed, ive had a massive appetite all my life untill these drugs.
Life feels more real since going from Medrol -> Pred but things are still very very wrong.
Ema I know this sounds like a stupid question but did Medrol make you feel detached and did things feel disturbingly different and almost 'unreal'
Do you not take steroids anymore Ema? when you took Dex alone how much did you take? I REALLY wished HC worked for me - i had no sides, although I never did try cortef just a generic brand called 'douglas' not sure if that would make a difference in stregnth.
Thank you for all the help.
P.S
I am doing a full hormone panel next week but I really doubt this is hormonal rather than caused by the drugs. For example if i had a testosterone defeciency wouldnt the symptoms be consistant? its asif my brain became more adapted to the drug as time passed and some mental aspects got easier - another reason why I considered it must be the florinef just 'wearing off' but no appetite 9 weeks later from florinef? seems very unlikely doesnt it, especially seeing as some days it can be better than others, ocassionally i will have 2-3 days of a normal appetite only for it go bad again. It still blows my mind how these drugs have given me such artificial nervous energy. 2 week ago i went on a 5 hour walk and didnt feel tired but felt very drugged. It doesnt make sense for someone who is hypo to be able to do that, infact none of my healthy friends could or would do that.
