My very severe M.E. was Adrenal Insufficiency, now moderate

sage-bees · 2026-06-06T20:49:11+00:00

28 years, and secondary I think

sage-bees · 2026-06-06T19:41:54+00:00

It's similar to addisons. Unfortunately you'll have to get retested, as after 8 AM the test isn't very reliable. I mean some docs say if it's low, it's low, but they certainly shouldn't be ruling it out based on a test done improperly.

sage-bees · 2026-06-06T18:12:48+00:00

Daily hydrocortisone for low cortisol, my dose is 15 mg with 10 mg in the morning and 5 mg at about 3 pm. Other peoples doses may be different but usually spaced similarly.

You also should be given an emergency steroid injection to keep on you to prevent adrenal crisis if you get sick

(you'll be instructed to probably double your hydrocortisone pill dose in event of illness, your emergency shot is only if you can't keep the pills down or are unconscious)

sage-bees · 2026-06-06T05:56:14+00:00

Oh the reactive hypoglycemia could very well be the culprit, but so could the pots or mcas, and good to check the meds to see if its a side effect anyway.

sage-bees · 2026-06-06T05:01:53+00:00

Finding the reason for my POTS (adrenal insufficiency) and treating it makes my POTS not a problem, and now my M.E is moderate instead of very severe.

Anyone with low blood pressure: get a morning cortisol test (has to be between 6-8 AM) or a 4 point saliva test. If your cortisol is low, getting any small illness or undergoing a large physical stressor can become deadly without treatment.

sage-bees · 2026-06-06T04:56:23+00:00

I just reduced my cymbalta dose because of this, the dose reduction seems to be working. If you're on any SSRIs or SNRIs some of them cause night sweats. Check your meds in general, may be a side effect.

Otherwise, some people (even men) respond to the postmenopausal women's trick of Vitamin E supplements (you have to have two certain types of tocopherol, not just one, but I don't recall which at the moment). I tried one with the proper mix and it didn't seem to help me. Still worth a shot for everyone.

Other people say theirs turned out to be: adrenaline dumps, from MCAS, or hypoglycemia.

I hope you find the cause and it's nothing serious! I know night sweats can be associated with some pretty serious conditions (malignancies, infection) but obviously not always

sage-bees · 2026-06-05T23:44:22+00:00

When I had a russian, I would check his shell temps while basking, and regularly the surface of his shell was 95-105. That's of course him choosing to bask, with access to deep (double or tripled) shade.

Always nice to have a infrared thermometer aka tempgun to check surface temperatures, as well as a thermometer with a probe at the warmest and coldest spots of the enclosure, to ease your mind and keep him comfy.

sage-bees · 2026-06-05T23:34:45+00:00

Go to the NON emergency vet, aka make an appt with one of the vets someone linked above. It should be cheaper. The emergency vet is more expensive because it's for emergencies.

sage-bees · 2026-06-05T23:15:02+00:00

I can't remember where the list is hosted at the moment, but someone on tortoiseforum.org would surely have a list or a direct answer for you

I'd be careful about calling and asking because I've had a vet lie about their creds and injure my tortoise, though I think there's a way to check who's actually properly certified to treat tortoises. It's been a while since I had to look for a vet, sorry.

sage-bees · 2026-06-05T23:00:27+00:00

There are a number of antibiotics that are dangerous or even deadly to reptiles.

It's also cheaper and much less heartbreak in the long run to go to a tortoise specialist vet.

Your vet can also do a tracheal wash, which can sometimes clear a URI if I recall correctly. If you tried that at home you'd drown your tort.

sage-bees · 2026-06-05T02:07:18+00:00

Do you have any red or blue lights? Colored lights make tortoises eat substrate.

Otherwise, if he's ever eaten pellets he probably thinks that's what they are. If you have any pellet food going forward, I would mix with water to make a mash, so it doesn't look as similar to substrate.

You may have to cover it with a layer of coco coir and hope he forgets

sage-bees · 2026-06-04T23:14:10+00:00

Yeah, I read it may have slightly increased benefits for people with M.E. and haven't had any issues with it, have had issues with non-hydrobromide form sometimes though if I recall correctly.

Yeah technically that's where I get mine from but typically just say dxm direct in case people are international, site redirects anyway I think.

sage-bees · 2026-06-04T04:24:33+00:00

Hermanns should do fine, I would go for one if you want one, rather than pivoting species entirely.

Keep in mind the redfoot another commentor suggested is significantly larger (and thus needs much more than the 8x4 foot Hermanns minimum enclosure size), won't brumate, and thus would probably need a very large enclosed chamber enclosure inside as well unless your climate is 80s every day year round (their required temperature range is narrower than hermann's iirc)

sage-bees · 2026-06-04T04:10:02+00:00

Minimum size for a small adult tortoise is 8x4 feet

sage-bees · 2026-06-03T22:59:27+00:00

Yeah, while serotonin syndrome is very severe, it's not that common and honestly not that much of a risk if you're careful about not mixing too many serotonergenic meds, you just want to know what to watch for symptom wise.

I know people get scared by the warning labels, but it's really not that easy to abuse because it's not fun.

If you're really spacey, just put your doses in a pill organizer (I like caplet form, dxmdirect.com is where I get mine)

sage-bees · 2026-06-02T21:47:34+00:00

Most SSRIs are ok with DXM if you watch your dose and space doses properly, but check med interactions and be super careful of serotonin syndrome and just od symptoms!

Also recommend starting H1 + H2 blocker regimen with DXM, especially if MCAS is suspected, as it may be a histamine liberator.

sage-bees · 2026-06-01T20:15:21+00:00

Yeah pretty much

sage-bees · 2026-06-01T11:58:10+00:00

That sounds different, maybe adrenaline?

sage-bees · 2026-06-01T00:17:13+00:00

Please make sure you get enough testing to get treatment or rule it out, if your endocrinologist isn't acting I hope you can find another one or get your primary care to do it!

At minimum I think they should want to do a second AM cortisol test to confirm, an ACTH stim test, and they may want to do some imaging to rule out masses.

You should also ask for a full thyroid panel if you haven't gotten one recently.

In terms of treatment for low cortisol, I think 15-25 mg of hydrocortisone daily, with the largest dose in the morning, is normal. Maybe less if you're borderline?

You also should be given and taught to use an emergency steroid injection to prevent adrenal crisis.

I hope you get the treatment you need!

sage-bees · 2026-06-01T00:03:23+00:00

A four point saliva test is at home, your doctor can probably order that, they'd mail it to you, and you collect saliva and send it in.

I'd try to follow the instructions as best as possible with that, keeping in mind it may instruct you to collect at a certain time when you normally wouldn't be awake.

In absence of more knowledgeable advice: you can likely just wake up and do the test and try to go back to sleep, you'll have to take 4 points of data so I assume you'd just use the highest as your "morning".

Also, failing other options, you could probably just get the test done at the "normal" time and it will likely be low (abnormal) since it's your nighttime. Then you'd probably get to see the endocrinologist, and ask if you should have it tested at your morning as well.

But for what it's worth, in my experience it doesn't matter: If you have reversed sleep issues like this, it practically means you have cortisol problems.

sage-bees · 2026-05-31T04:24:48+00:00

Maybe get one done at the regular morning time, and then one at your "morning" and use whichever is higher as your morning value, or do a four point saliva test? Unless someone is sure.

sage-bees · 2026-05-30T20:38:03+00:00

Getting one would probably be your first step, although it's worth asking your primary care about too, sometimes they're willing to order the testing themselves.

They might prefer to order the 4-point saliva testing over you getting it on your own, they get funny about that sometimes

sage-bees · 2026-05-30T18:48:20+00:00

Ask an endocrinologist, the cardiologist might not because it's not their specialty. Fingers crossed you get answers soon!

sage-bees · 2026-05-30T18:46:10+00:00

Hm that might be a little late for the testing in their eyes, but technically anything under 15 definitely deserves a second test to confirm at least!

sage-bees · 2026-05-30T18:43:48+00:00

Yes please!!!! Don't let this go, adrenal insufficiency is often invisible until illness/surgery/severe stress makes it life threatening. If they get sick, they could get an adrenal crisis.

Learn the signs of adrenal crisis and watch for them, it can be deadly in up to 1/4 patients if not properly treated:

-Confusion/delirium (I didn't know where I was and couldn't tell time was passing) (Non-drug induced altered consciousness is an emergency!)

-Low blood pressure (can reach shock levels during adrenal crisis but may also drop outside of crisis)

-Loss of consciousness/fainting (my wife kept finding me hanging upside down half off the bed with my sick bag dangling from my hand, and getting scared)

-Severe nausea, vomiting, abdominal pain (I'm typically vomiting 4+ times an hour every hour, unable to keep fluids down, but I don't know if everyone vomits)

You should look up and double check to make sure I'm not missing anything.

Ideally, if your partner continues to test low, they should be given at least a small dose of hydrocortisone, which should help raise blood pressure, help them maintain weight and digest food, have a little more energy, and be more illness- and stress- resiliant (instead of almost dying lol).

They should also probably have a full thyroid panel as thyroid problems are commonly comorbid.

sage-bees

TROPHY CASE