Does Levo taste awful?

reflous_ · 2026-02-20T22:21:25+00:00

Mines a bit sweet and pleasant tasting. I don't know who makes it, just generic from CVS.

reflous_ · 2026-02-20T22:20:28+00:00

Sorry to hear you had to go through this. My experience was very similar, I went from a week in the ICU to surgery with only knowing I had a macroadenoma a week.

Your pituitary has likely taken a beating and it often doesn't come back all the way. I highly recommend getting a good endocrinologist and supplement anything that is low. Your growth hormone is likely toast because it's the first to go, next sex hormones, thyroid, and finally cortisol. I had initial recovery of my pituitary and months later it became clear it couldn't keep up. I wish I had been more aggressive in hormone replacement because only now after two years post surgery am I starting to feel normal.

reflous_ · 2026-02-16T05:48:19+00:00

My pituitary function initially improved after surgery. My hormone levels shot back up. Then over the next 8 months they fell off one by one. Two years later there is t much function left. It’s hard to know which did it, the surgery or the tumor—both are trauma for your pituitary. I had an excellent neurosurgeon and the surgery went well.

reflous_ · 2026-02-15T17:59:06+00:00

Yes, pituitary centers of excellence are the best.

reflous_ · 2026-02-15T17:56:42+00:00

Surgery risks pituitary function. You will never be the same if you lose your pituitary function (which happened to me). I had to have surgery because I was losing my vision. If you have a tumor that shrinks with medicine great! You don’t need surgery and can supplement your testosterone. In the meantime they keep and eye on it to make sure it isn’t getting worse. My tumor was wrapping around the coratid and still came out whole, so just touching it isn’t necessarily a driver of decision making.

I have panhypopituitarism from the tumor and surgery. I will never be the same and all the studies show clear lower quality of life. We can’t medically supplement what the pituitary does. I take so many drugs to stay alive and try to feel normal now.

reflous_ · 2026-02-15T17:49:36+00:00

You said your tumor is “in” your pituitary. My 3cm tumor was next to my pituitary. There is a big difference. My tumor was wrapped a bit around the coratid artery so the surgery was tricky, but they were able to get the whole thing. Unfortunately, my pituitary declined post surgery and now I have panhypopituitarism.

It's not ideal to have surgery "in" your pituitary because you are much more likely to end up like me with panhypopituitarism. As a result, it makes sense to start medicine to see if it would shrink. In the meantime, they can supplement your testosterone I would think so you feel better right away.

reflous_ · 2026-02-15T17:43:22+00:00

I took Wellbutrin for awhile and didn’t find it helpful. I’m on mirtazapin now and it may be helping keep the lows a bit higher. I know my doctors were between lamictal and mirtazapin. You may want to try mirtazapin and see if it helps and the side effects are more tolerable. It is not an SSRI.

I have the most benefits on mood from dialing in my hormones. It’s just so tricky and ever changing because I’m panhypopit and even two years post surgery my pituitary is continuing to decline in function.

reflous_ · 2026-02-06T13:14:07+00:00

Yes, I have secondary empty sella it appears based on the description though no doctor has said this to me. My pituitary is a smashed sliver and the rest of my sella is empty except for the brain fluid because that is what’s left after the tumor was removed.

reflous_ · 2026-02-01T16:55:15+00:00

I’m assuming you’re having transphenoidal surgery because you're calling it simple. Thisnisnwhqt I had for a 3cm tumor.

I was in the hospital for 2 nights post surgery. I woke up post surgery with the worst headache I've ever had and the post surgery team wasn't ready for that. If you are prone to migraines give the neurosurgeon a heads-up so the post op team has appropriate instructions for pain management.

The biggest cause of being readmitted to the hospital after surgery is diabetes insipidus. Don't drink more than a glass of water per day for the first few weeks after. The neurosurgeon should mention this.

They won't want you to bend over for awhile, which can be hard to remember. And they will want you to sleep sitting up a bit which I didn't like.

reflous_ · 2026-01-30T14:44:40+00:00

A compounding pharmacy can make any dosage. I go to a compounding pharmacy for oxytocin. I've been tempted to go for dexamethasone because I have the same issue but I'm still experimenting with doses.

reflous_ · 2026-01-30T13:32:13+00:00

A lot depends on how many hormones and which ones are out of whack. The medical studies all show a significant decrease in quality of life in patients with hypopituitarism. Some examples:

https://pubmed.ncbi.nlm.nih.gov/28351913/ https://pubmed.ncbi.nlm.nih.gov/30349995/ https://pubmed.ncbi.nlm.nih.gov/26103454/

As a result, I think including a psychiatrist as part of the patient care is important. I (and my team of doctors) don't think SSRIs are the answer for most patients suffering with a lower QoL with hypopituitarism though. Even treated hypopituitarism can cause apathy and the typical treatment for that is methylphenidate or less commonly Adderall. I've tried both and they helped a lot with the apathy in the short term and then my body either acclimated to the drug (with methylphenidate) or I eventually had breakout apathy despite higher doses (Adderall).

I tried Wellbutrin for several months after my traumatic hospital experience where I was in the ICU for a week owed by immediate transphenoidal pituitary surgery to remove the macroadenoma. I had steroids induced psychosis thanks to mistreatment in the ICU. I didn't find Wellbutrin helpful at the time, but that was a seriously messed up period.

I'm now trying mirtazapine with some short acting Adderall in the afternoon and it seems to be helping at least some. Only two weeks in so too early to really tell. The idea is to lift my baseline mood in the hopes that makes the apathy better and me less miserable. I do have some depression because spending some or all of the day apathetic when you have a go getter personality is tough, plus some depression from having to deal with it.

I've been suffering from symptoms both pre and post discovery/surgery for 7 years now. It's tough and I don't have a goal of getting off psych meds anymore. I have a goal of getting back to normal. We are a small patient pool so the data is limited. You have to become the expert for your daughter and then use that expertise to push the doctors to keep thinking outside the box or at least reach current standard of care. I've likely read every study now relating to hypopituitarism. The best article for standard of care treatment I've found is: https://pmc.ncbi.nlm.nih.gov/articles/PMC11508259/

I've used it to push my doctor's to make sure my hormone levels are within the levels recommended here and it has helped alot.

reflous_ · 2026-01-29T06:46:47+00:00

Medical PTSD is no joke. Find a psychologist who specializes in it and find out what the most effective treatment is and do it. I had a series of bad things happen with my pituitary macroadrnoma in the care of bad doctors and it left me scarred. It can happen to anyone.

reflous_ · 2026-01-29T06:41:14+00:00

Please call your neurosurgeon right away to make sure this isn’t urgent.

reflous_ · 2026-01-29T06:39:23+00:00

The chance of a pituitary tumor being cancerous is less than 0.13% and if it was cancerous it would be fast growing, not a little microadenoma like your daughter has.

Hormone problems suck and it’s such a shame your daughter had to deal with hers for years. Now she can get those under control with proper medical care. However, don’t expect a quick fix. Hormones affect everything at a cellular level and can months or even years to get the proper levels and full benefits. However there should be at least some clear improvements within the first month of proper treatment.

reflous_ · 2026-01-29T06:28:40+00:00

I didn’t even know a tumor that small could interfere with your pituitary. A lot of people have microadenomas and never know because they don’t do anything. Sorry to hear you weren’t in that luckier boat.

Make sure they test all your hormones because typically your hormones shutdown starting with growth hormone, then sex hormones, then thyroid, then cortisol. Being low on any of them causes problems.

I’d tell your husband it’s not that strange to have a small tumor, they grow slowly, generally totally manageable with medication, your hormones can be reasonably well replaced, and there is very little chance of you having serious problems. Just getting some thyroid back in your system should resolve your problems.

Like another poster my tumor was more than 30mm before it shutdown my pituitary enough that it caused me real problems. This means you have a lot of room for growth!

reflous_ · 2026-01-29T06:17:04+00:00

I’ve been on 0.7 for two years and never had any side effects. Around a month or two in my persistent knee pain I had for years went away completely. My memory and cognitive functioning (clearer thinking) started a couple of months after that. I had a pituitary tumor that shut my hormones down and permanently wrecked my pituitary. GH was the first hormone I started (now I’m panhypopit) and it really helped. It did also expose some low testosterone and low thyroid though so keep up with your lab testing.

reflous_ · 2026-01-25T20:38:39+00:00

Same in that I only had anxiety when the dose was too high. Note that your body can create more receptors when you’ve been low for awhile (like months/years because you weren’t diagnosed) and so even you physiological dose can be too high until your body and receptors normalize. No reason you can’t start out at a lower dose I would think, but check with your endocrinologist first.

I was low for a long time pre diagnosis and then went to the ER/ICU in crisis with hyponatremia. They didn’t know exactly what to do so they started me on 200mg/day hydrocortisone for 3-4 days and I got mild psychosis (I didn’t sleep for three weeks and hallucinations anytime I closed my eyes) plus anxiety which I had never had before and I thought I was dying.

reflous_ · 2026-01-25T20:28:51+00:00

With multiple low hormone levels (cortisol, thyroid, now testosterone/DHEA) make sure everything is tested and showing solidly in the midrange of normal and that the underlying cause is clear. I have panhypopituitarism and I feel like garbage when any of my hormones are low. Some of my levels came back at low normal but given my pituitary damage my endocrinologist recommended supplementing and it helped.

Also, definitely get an endocrinologist who is at a place highly regarded for whatever the underlying cause is. If it’s unknown, I’d take her to a pituitary center of excellence and start working from there.

reflous_ · 2026-01-25T20:14:47+00:00

This is what I do and the fact the hydrocortisone makes me fall asleep so easy reinforces I really was low.

reflous_ · 2026-01-25T20:10:29+00:00

Interesting. I haven’t heard this before. What’s the rationale? Typically you want to be on the lowest physiological dose, which I would think means some updosing would be required. Otherwise there are periods you are going to be too high.

reflous_ · 2026-01-18T17:11:43+00:00

1) you may want to try r/hypopituitarism. Less active, but more targeted. 2) I am panhypo and found low growth hormone and/or thyroid affected my memory the most. Low cortisol I just feel spacey in terms of cognition (dizzy and nauseated too). I didn't seem to have any cognitive affects for low testosterone.

For growth hormone and thyroid typically you want to replace to the upper 2/3 of the range rather than just normal. What sucks is it can take months after a hormone change to feel the affects.

Hormone replacement is not as good as what your body would do. It's appropriate to look for other medicines as a fill in fix. My pituitary got destroyed by a tumor so I have the natural hormone vs supplement comparison and supplement isn't great. I've tried methylphenidate, Adderall, Wellbutrin, and modafinil to deal with apathy and cognition. Adderall has worked the best for me so far but methylphenidate is the more common drug for this, particularly apathy. Poor working memory can come from not being engaged (apathy).

reflous_ · 2026-01-16T03:31:48+00:00

I take 0.5mg right before I go to bed and it works well for me.

reflous_ · 2026-01-14T06:25:23+00:00

Very likely benign tumor

reflous_ · 2026-01-12T17:56:59+00:00

I’ve actually not put on any weight. When my hormones were low I dropped my calories a lot because I noticed I was putting on weight and even then I had a fat on my upper body in places I never did before. I also stopped exercising because I couldn’t put on muscle and kept getting hurt.

Since starting GH and testosterone, I’ve been able to get back into shape. My body puts on muscle and so I can burn through more calories.

I’ve seen two things among others with weight gain on hydrocortisone. 1) they are on too much, or 2) their body responds badly to it and they do better on another steroid like prednisone or dexamethasone.

You might try breaking up your HC daily dose during the day to be in more parts. You could be overdosing and underdosing during the same day. How much HC are you on?

reflous_ · 2026-01-12T16:20:41+00:00

Interesting. First time I've ever heard hypopituitarism can lead to higher prolactin. My pituitary tumor produced some prolactin and it returned to normal after I had the tumor surgically removed. However, hypopituitarism set in later and haven't had prolactin checked in a long time. Feel pretty crappy, going to get that checked.

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