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Hypothalamic dysfunction symptoms?

Posted by zachary777 @zachary777, Aug 11 7:10pm

I’ve had known hypothalamic and pituitary damage and swelling for years due to inflammatory lesions from an illness since childhood (led to panhypopituitarism). I’m 20 right now and have recent increased swelling of the HT based on my recent biannual MRI. I have been having extreme fatigue and am always hot and flushed. My endocrine labs are all stable (including thyroid levels). I know it’s summer and it’s hot but for months I’ve been hot all the time in addition to worsening surges (even in AC or the refrigerator aisle in a store..). I was wondering if there are any medications for stopping this or my chronic fatigue, which has been bothersome to say the least. I see my endocrinologist/metabolic doctor soon but don’t know what to advocate for.

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gretchenmpls | @gretchenmpls | Sep 9 1:05pm

Hello @zachary777 I am sorry to hear of your symptoms and no-so-great quality of life you are experiencing. As a endocrine rare disease patient with multiple other diagnosis, I can empathize with the chasing down the next solution. Your message is from August and I'm only seeing it now. How did your next appointment go with your endocrinologist? As we know, normal lab results do not indicate we feel okay. New swelling should prompt re-imaging and marker testing rather than reassurance. This article talks about the symptoms you are experiencing having hypothalamic injury. https://pmc.ncbi.nlm.nih.gov/articles/PMC13466942/ I had normal thyroid labs and many other labs, but my symptoms were such that scans of the glands were a bit abnormal and we tried certain medications that ultimately gave me back my quality of life - despite being in the normal lab range. My personal 'normal' fell inside the general public normal range and when I creep outside of MY normal, symptoms appear. Keep advocating for yourself and I hope you find relief!

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zachary777 | @zachary777 | Sep 10 3:07pm
In reply to @gretchenmpls "Hello @zachary777 I am sorry to hear of your symptoms and no-so-great quality of life you..." + (show)
Profile picture for gretchenmpls @gretchenmpls

Hello @zachary777 I am sorry to hear of your symptoms and no-so-great quality of life you are experiencing. As a endocrine rare disease patient with multiple other diagnosis, I can empathize with the chasing down the next solution. Your message is from August and I'm only seeing it now. How did your next appointment go with your endocrinologist? As we know, normal lab results do not indicate we feel okay. New swelling should prompt re-imaging and marker testing rather than reassurance. This article talks about the symptoms you are experiencing having hypothalamic injury. https://pmc.ncbi.nlm.nih.gov/articles/PMC13466942/ I had normal thyroid labs and many other labs, but my symptoms were such that scans of the glands were a bit abnormal and we tried certain medications that ultimately gave me back my quality of life - despite being in the normal lab range. My personal 'normal' fell inside the general public normal range and when I creep outside of MY normal, symptoms appear. Keep advocating for yourself and I hope you find relief!

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@gretchenmpls My endocrinologist essentially said there is nothing they can do and to just treat the symptoms. So that was great. I’ll try and press a bit more as you suggest. Thanks for the article — I’ll be sure to read up on it!

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