Blind and Visually Impaired Community
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finding an endocrinologist (self.Blind)
submitted by mindless_focus_9445
[removed]
weirdlywondering1127 2 points 2y ago
I've got ONH too, had a similar-ish experience. I've never seen an endocrinologist (even though I know I should). I got an MRI to check my pituitary gland and once that was okay they kind of just dropped it, I'd definitely suggest talking to your GP, they might suggest AN MRI first - which is a good idea - but don't be afraid to demand to see the specialist you want to see.
mindless_focus_9445 [OP] 2 points 2y ago
yeah i got an mri when i was younger and they said it looked fine. but the more research i do the more i realize that its hit or miss to see pituitary problems on an mri. i definitely think my gp will send me to an endocrinologist, especially considering all the symptoms i have. thanks so much for your input i love talking to other people w onh!
weirdlywondering1127 1 points 2y ago
Me too! It seems there aren't many of us around here 😂. Did they use a dye to see the gland better? It might be worth asking for a second MRI if you're unsure/unhappy with the first one.
mindless_focus_9445 [OP] 2 points 2y ago
oh man i cant remember i must have been 8 or 9. i am kinda surprised that my old endocrinologist said i was fine when i was only 12 and didn't want me to come back for a follow up at any point buttt whatever i guess im dealing with it now and thats what matters
on another note, i know right?!?!!! there seems to be very little information on onh and what it comes with. im just now starting to realize how my adhd and ocd are probably related to my onh. its crazy how little info is out there 🤔
on another note, i know right?!?!!! there seems to be very little information on onh and what it comes with. im just now starting to realize how my adhd and ocd are probably related to my onh. its crazy how little info is out there 🤔
weirdlywondering1127 1 points 2y ago
Oh yeah there's so much to it, it's so complicated. When my eye doctor wrote a letter for worthing for me a few years back and talked about how it was a rare condition I thought he was just being dramatic to help me out but I guess not???
Also I could be wrong but I think once you're past a certain age there are certain things involving hormones that can't happen to you. Also if you were checked that long ago you should definitely get a repeat scan just in case anything changed.
Also I could be wrong but I think once you're past a certain age there are certain things involving hormones that can't happen to you. Also if you were checked that long ago you should definitely get a repeat scan just in case anything changed.
soselections 2 points 2y ago
Hi there! Type one diabetic here, also low vision from PDR. I would start with your GP because you might need to get some blood work done to rule other problems out. If you're in the states, most require a referral because that's how insurance works generally. These are some very concerning symptoms and you should be seen ASAP. Endocrinologists can have longer wait times (as in they don't have as much availability as a GP). Good luck!
mindless_focus_9445 [OP] 1 points 2y ago
yeah i know i need to go but finding a good one seems really difficult. i just made an appointment with my gp so hopefully thats a step in the right direction. thank you so much for your advice, i really appreciate it :)))
snow671 2 points 2y ago
Typically a GP would give you a referral to an endocrinologist
mindless_focus_9445 [OP] 2 points 2y ago
thanks! do you know if i need a referral to see an endocrinologist?
snow671 2 points 2y ago
I think most specialists require referrals, but you might be able to get one through e-mail or video appointment with your GP, to avoid an extra trip.
mindless_focus_9445 [OP] 1 points 2y ago
gotcha, thanks so much!
impablomations 1 points 2y ago
We can't give medical advice on this sub, please consult a Dr if you have concerns regarding your health.
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