Eternal hot flashes (adrenal insufficiency): What helps?

Posted by metriks @metriks, Jul 31, 2023

I have adrenal insufficiency and a failing pituitary gland. I also have almost no T despite injections. Doctors just ignore my hot flash pleas. They come on and last for hours or days. Gabapentin can help but it makes me groggy in the day. Anyone have any experience with this or a doctor who cares? Makes my life miserable but I think they see it as just something minor. Oh I have fibromyalgia as well.

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I've just read up on something called empty sella syndrome shown on brain MRI. The sella is normally filled by the pituitary gland. In this syndrome, the gland is flattened or filled with CSF. The most prominent symptoms are related to hormones. In your shoes, I would seek out a female doctor, preferably one over 50! It would be entirely normal to see a gynecologist for hot flashes and a female would not diminish your symptoms. You might also start adding more soy to your diet, such a tofu.

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@sb4ca

I've just read up on something called empty sella syndrome shown on brain MRI. The sella is normally filled by the pituitary gland. In this syndrome, the gland is flattened or filled with CSF. The most prominent symptoms are related to hormones. In your shoes, I would seek out a female doctor, preferably one over 50! It would be entirely normal to see a gynecologist for hot flashes and a female would not diminish your symptoms. You might also start adding more soy to your diet, such a tofu.

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Thank you! I do have partially empty cella syndrome. I will do both. Appreciate the comments.

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@metriks, I add my welcome. I'm also tagging fellow members @astaingegerdm @retha @judy5140 @adamek3638 @krisjb1 @upartist @drdinsmore who have mentioned adrenal insufficiency elsewhere and may have some input about dealing with hot flashes.

Since @sb4ca mentioned empty sella syndrome, you might also be interested in this related discussion:
- Empty Sella Syndrome https://connect.mayoclinic.org/discussion/empty-sella-syndrome/

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@colleenyoung

@metriks, I add my welcome. I'm also tagging fellow members @astaingegerdm @retha @judy5140 @adamek3638 @krisjb1 @upartist @drdinsmore who have mentioned adrenal insufficiency elsewhere and may have some input about dealing with hot flashes.

Since @sb4ca mentioned empty sella syndrome, you might also be interested in this related discussion:
- Empty Sella Syndrome https://connect.mayoclinic.org/discussion/empty-sella-syndrome/

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Hi sb4ca. Adrenal insufficiency is challenging. I struggle with various symptoms, which do include body temperature fluctuations and intolerance to temperature changes, both cold and hot. My hydrocortisone supplement is designed for me to have control over part of it, in that I adjust the smaller dosage to meet my needs responding to fluctuations in circumstances such as illness or significant stress. This process can get a bit subjective, and I am continually working to keep the dosing as low as possible. Very tricky at times with no clear path. I am sure that you have already, but if not, you can use the endocrine.org site for information. There are other good sites for info as well, such as Mayo Clinic, Cleveland Clinic, Johns Hopkins. Just fyi, I carry an emergency pack when I travel with heat packs and my injectable hydrocortisone. For every day, I carry a pack of my 5 mg hydrocortisone tabs, (my floating dose) as sometimes I need an emergency dose on the spot if something happens with my blood pressure. Good luck with this! There are no easy answers, but its ok to be proactive and seek guidance.
UpArtist

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Thank you! I hadn’t realized the hydrocortisone I was taking was for this issue specifically. Good to know! One interesting thing is gabapentin (100mg) helps. I take 900mg at night and I started to suspect that was helping because the heat usually comes when the 900 is waining. After I take the nightly dose it starts to subside (70% of the time). So my doctor prescribed a small 100 mg dose for the daytime but even that makes me tired and groggy.

Very good points.

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I have Long Covid and the hot flashes and perspiration issues are awful.. I have been prescribed Duloxetine 60mg twice a day. It's an SSR, but for whatever reason it works for me. Not completely, but quite enough to make me comfortable to even leave the house.

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Hi Metriks. I have another little thing that might help your hot flash symptoms. I have co-morbidities, so this is subjective. I get horrific muscle spasms which sometimes just wont stop. I have recently started carrying little ice blocks when I travel up to or over an hour (spasms in the feet while driving, and ice breaks a spam). I carry both hard an flexible paks. Maybe you could apply the flexible ones under your clothing around your front core, when the super heat flashes begin. Maybe the sharp cold will break the trigger of the hot flash. If it works, it would be a really easy quick fix, though not long term. Hang in there!

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@upartist

Hi Metriks. I have another little thing that might help your hot flash symptoms. I have co-morbidities, so this is subjective. I get horrific muscle spasms which sometimes just wont stop. I have recently started carrying little ice blocks when I travel up to or over an hour (spasms in the feet while driving, and ice breaks a spam). I carry both hard an flexible paks. Maybe you could apply the flexible ones under your clothing around your front core, when the super heat flashes begin. Maybe the sharp cold will break the trigger of the hot flash. If it works, it would be a really easy quick fix, though not long term. Hang in there!

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Thank you. Will try and report back.

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@upartist

Hi Metriks. I have another little thing that might help your hot flash symptoms. I have co-morbidities, so this is subjective. I get horrific muscle spasms which sometimes just wont stop. I have recently started carrying little ice blocks when I travel up to or over an hour (spasms in the feet while driving, and ice breaks a spam). I carry both hard an flexible paks. Maybe you could apply the flexible ones under your clothing around your front core, when the super heat flashes begin. Maybe the sharp cold will break the trigger of the hot flash. If it works, it would be a really easy quick fix, though not long term. Hang in there!

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I was having massive hot flashes very regularly. I spoke with my older sister who is a pharmacist. She recommended I try Oxybutynin ER. I now take a 10mg tablet once per day & my hot flashes are almost
completely extinguished. I looked up the drug online & saw that it has helped other women with hot flashes even though it wasn’t formulated for that. Try it for yourself it just might help you too.

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I have been dealing with Addison disease for 3 years. The symptoms are really debilitating. Weakness, dizziness, diarrhea, nausea and any change in the weather barometer drive me crazy with panic attacks. Sometimes even my love ones don't believe me.

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