Synacthen: Hi all this is my first post... - Asthma Community ...

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Synacthen

kernowboy profile image
6 Replies

Hi all this is my first post and new to all this. Im at my wits end and hoping someone can help or is/has been in the same boat. Tia.

I am a 36yr old male and had acute asthma when i was very young (mid-late 80s) and the only thing that seemed to help me was to have regular steriod injections (every week) of synacthen which i believe also produces cortisol. Ive been told i was one of the last patients to be allowed this as was eventually banned due to its high strength and side affects. I was having these for a few years i believe. The side affects included growth stunt and learning capabilities at school. I am only 5'6" at a push and struggled at school. I also have an excessive breast size and struggle to grow decent facial hair which i believe could be a hormonal thing yet bloods just come back 'normal'. My biggest problem is the depression im suffering which has been for as long as i can remember and also suffer from stiff joints and mainly back which is really getting to me esp as im getting older. Has anyone else had the high level of steriod injections and also suffering any similar symptoms? My bloods show my morning cortisol level is 'normal' but i dont believe this is an accurate test as it doesnt test the functionality or whether it drops as it should during the day. I want to have mri scans of glands (pituitary, adrenal, thyroid etc to see if any tumors etc and also the size of my hippocampus in the brain as this can shrink due to too much stress/ high cortisone levels. Also my hpa axis. Basically anything that could be causing my depression and i feel the lack of anti inflammatory in my system. My gp just wants me to keep popping anti depressants and the counselling and if doesnt help refer me to a phyciatrist like im just being a hypocondriac or just plan nuts. Because of my 'normal' blood results he wont refer me for scans or the proper cortisol function test which ironically involves a synathen injection! Is my brain shot or can your body be immune to 'normal' cortisol levels after years of high synthetic levels? Any help or info or similar storys would be great as i feel so alone with all this. I just want to have any suitable tests to get to the bottom of it and start leading a more normal life. Sorry such a long post :)

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elanaoali profile image
elanaoali

I can see you have had a really tough time with your asthma and depression and want answers. I am not able to put myself in your position as an adult onset asthmatic myself struggling with a really nasty flare up with 3 weeks of steroid tablets which has really pickled my brain. Plus past 3 years of declining health in my asthma, acid reflux and other long term health condition of 8 years. Both have taken alot more out of me mentally than I realized. I want answers I want to be well. I decided to help myself with a referral to my local city mental well-being service.. One that I thought if you could get to do if local mental health skills provide it is living with chronic illness.

Not to decry your position but have you considered that because of your history that the depression was brought on by the experience you sufferd. Use your support system too within family and friends. This is a great place to share and be honest how tough things can be fior especially serve asthmatic like you.

I hope and pray you find the help you r looking for.n

Griffon profile image
Griffon

Wish I could help . You already seem very clued up on your condition so I'm only replying to show sympathy for your plight . Hope you get this sorted .

ChrissieMons profile image
ChrissieMons

I wonder if you have a medical neligence claim. It might be worth investigating as at the very least you could get a private opinion on the options open to you. You might also try the TV programs which like unusual conditions and yours sounds very unusual.

warmlight profile image
warmlight

I’ve not heard of synacthen injections for treating asthma. Synacthen is the hormone produced by your pituitary gland that stimulates your adrenal gland to produce cortisol.

If you want further investigations in to your cortisol production you need to ask your GP to refer you to an endocrinologist. Be warned the wait can be 6 months from receipt of the referral. In the meantime while you wait for the consultation you could show your GP that you are engaging with his treatments too in terms of medication and counselling as they do genuinely help.

I have developed adrenal insufficiency as a consequence of all the oral steroid treatment for numerous asthma flare ups. Before I was tested I was utterly exhausted no motivation very low energy levels sleeping a lot of the day as well as the night. Low mood, thirsty and struggling cognitively ie: poor concentration and problem solving / prioritising. It was due to low cortisol levels after weaning from steroids which I now have to take as maintenance, I had a short synacthen test in December which showed the low cortisol which is why I am still waiting to have my first endo appt on 18th June!

I hope this helps a little and pray you can find a way through to help lift your mood.

Good luck xx

I was on steroids for a couple of weeks I didn't know much about them at that time after I stpped taking them I did some research and bought some low dose (165mg) bovine dessicated adrenal capsules which I am still taking

Maybe you could benefit from DHEA to reduce any breast growth , GABA might help with your depression

Is's not good what happened to you and I feel your pain but I hope you come to terms with it and are able to enjoy life again

kernowboy profile image
kernowboy

Would like to thank everyone for their replies. Wish everyone the best health possible. Ive taken a step forward and ordered a private comprehensive saliva/blood home test kit which i send off for results of all sorts of hormones/functions. Hopefully it will show signs that my gp cant ignore. Next step mri scan!

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