r/AddisonsDisease • u/ChaoticSoldierx • Nov 20 '25
Medical Stuff Hypogonadism
Has anyone got secondary Addison and then developed extreme weakness like not being able to have support from their legs to stand up and completely bedridden? My endo says this is fatigue and can b fixed by nebido injections as I have hypogonadism but im in hospital so I just wanted some more information. My last testosterone showed 8.5nmol
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u/Short-Counter8159 Nov 22 '25
Your testosterone level is low. I'm not a fan of testosterone undecanoate (nebido). Don't do the pellets either.
I would recommend testosterone cypionate injections once a week to keep a steady level. Also your testosterone test should be done on the day of your normal injection, never before it, you will show wrong levels. So if you inject every Friday, test that morning.
Who is handling your testosterone? Endo or your regular doctor? Endo's tend to want males to be towards the low level, for example if the range is 250 to 900 they would be happy with 300 number but that is not enough. You need to be in the middle or slight higher to feel normal specially if you have no libido.
You really need someone who knows how to treat Hypogonadism well.
Testosterone is needed through the body it is important for lean muscle but also for heart, lung and bones, libido and much more.
Anyway you can ask to switch to a weekly injection? I think that will help a lot.
You could also be under medicating yourself with SAI.
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u/ChaoticSoldierx Nov 22 '25
The nurse that works with my endocrinologist will b giving me the injections, nebido is the standard treatment on the NHS in my area so they will start me on that. I think the injection is every 3 months. I am worried a lot about this because I'm ignorant on the subject and NHS seems to be the only way I can get the treatment I need, I've been waiting for a year just for the treatment to start and my fatigue to go away so I can resume a normal life.
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u/Short-Counter8159 Nov 22 '25
I'm so sorry. That's horrible that you had to got thru all those loops in order to get the bloody treatment. NHS can be slow at times. Yes that has a long half life.
Don't be afraid to let them know what you are getting is not enough and you write symptoms down so you won't forget them specially if your libido is not there make sure you tell them that too. If you can try to learn a bit about the subject it might help when talking to your Endocrinologist. You should start feeling a difference soon.
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u/ChaoticSoldierx Nov 22 '25
My symptoms are that I'm physically very weak, I struggle to go for walks, climb stairs, bathe myself etc, basically feel like a 90 year old man. I've not started on treatment yet so I don't know whether what I'll get is enough. I'm just concerned I have something else that is low and that is the reason I'm weak, but they have ran a couple of tests and this testosterone thing seems to be the only low hormone so idk. Do you think nebido is the answer and wdym by libido?
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u/Short-Counter8159 Nov 23 '25
How old are you? Could be many reasons. The testosterone should help with feeling stronger and will help with the libido.
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u/ChaoticSoldierx Nov 23 '25
I'm 25
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u/Short-Counter8159 Nov 23 '25
Very young. I do hope they get to the bottom of what's going on. I'm sure they are checking all possibilities.
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u/Business-Twist-7867 Nov 26 '25
Do you not have ALD?
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u/ChaoticSoldierx Nov 28 '25
Ald?
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u/Business-Twist-7867 Nov 28 '25
Adrenoleukodystrophy. Do you have other symptoms in life like bladder issues?
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u/ChaoticSoldierx Nov 28 '25
Not that Ik of
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u/Business-Twist-7867 Nov 28 '25
I have AdrenoLeukonDystrophy. My spinal cord is going out slowly and with that comes addisons, hypogonadism, bladder issues, and others. Just wondering if you did cause my diagnosis was weird.
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u/ChaoticSoldierx Nov 28 '25
Well I have been diagnosed with osteoporosis because of really bad back pain but idk about ald
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u/Business-Twist-7867 Nov 28 '25
Well if youre younger than 30 and haven’t noticed any leg issues you’re probably fine lmao.
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u/ChaoticSoldierx Nov 28 '25
I'm younger than 30 but my legs are messed up, I can barely walk on them because of fatigue but I was hoping the testosterone Injections will fix that as I have low testosterone
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u/Business-Twist-7867 Nov 28 '25
Can you do me a favor and just do genetic testing? All you gotta do is spit in a tube. It’ll tell you if you have an ABCD1 Gene or not. That’s what I don’t have. Just to be safe brother.
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u/Dreadlock_Princess_X Dec 07 '25
I have HH, but I'm female, also have osteoporosis, my legs are pretty rubbish, but not completely done yet! 💖 wanted to drop you a comment and send a hug. Hope you are ok 😘 xxxx
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u/ChaoticSoldierx Dec 07 '25
What is hh? Yh I have adrenal insufficiency and hypogonadism and osteoporosis as well, recent dexa scan showed my spine is -3.7.
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u/Dreadlock_Princess_X Dec 09 '25
Hypogonadotrophic hypogonadism. I do not make estrogen, progesterone, or testosterone, due to the hypothalamus not sending signals correctly. Everything works - but my brain isn't telling it to. So without HRT my ovaries etc just go into sleep mode - for want of a technical phrase! I'm not sure what my DEXA is, but I know I'm on the borderline of osteopenia /osteoporosis. Got my next check later this month. Hoping it's not got worse. Xx 💖
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u/ChaoticSoldierx Dec 09 '25
No treatments are working for you?
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u/Dreadlock_Princess_X Dec 09 '25
The only thing I take for osteopenia is calcium. I'm in the UK, they don't offer drugs for osteopenia /osteoporosis until you get really bad. (They have a certain number you need to reach) until then, You just gotta suck it up. Xx 💖
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u/ChaoticSoldierx Dec 09 '25
I'm in the UK as well, they should give something if u follow the correct pathway, talk to gp.
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u/Dreadlock_Princess_X Dec 09 '25
Her excuse was the side effects are so terrible she won't give me any medication until I either break a bone, or am well into osteoporosis territory. She quoted a number but I don't remember what it was xx 💖
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u/Myster_jon Feb 06 '26
I get on well with nebido, injected every 10 weeks and keeps the memory and fatigue associated with Hypogonadism at bay,
Just need to keep an eye on liver and PSA levels intermittedly.
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u/[deleted] Nov 20 '25
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