how to know proper dose of HC

[kevieb]

I know that the usual dose of HC for people is from 20-30 mgs, but i hear that occasionally there are some people who need a little more.  How would you know if you are a person who needs a little more HC?  What kind of symptoms would you have?

I live with such exhaustion and depression there are some days I think I just don't want to go on--no, I'm not suicidal.

However, many of my hormone, vitamin and mineral levels are still lower than my doc would like, although there are within lab ranges--my doc seems to want most things to be in the upper levels of the lab ranges--and some even higher than what lab ranges say. However, my doctor is sick, and no longer able to work right now--and if he is never able to continue his work, I don't know if I will be able to find anyone who would follow what he was doing.

I know that many of the things I am low in can cause very similar symptoms--fatigue, pain, joint aches, etc.   I also do not get to bed until around 12;30 quite often--and I don't eat really well because I have no appetite. the only time I really feel like eating is in the evening  (can't explain that one)  with as little as I seem to eat---I don't seem to lose any weight.

My doc wrote my prescriptions out with enough thyroid and HC that i could experiment a little with the amounts if I wanted to--but I don't know that it would be a good idea to do that without some guidance.

I could really use some help getting a healthier diet, but am jut too tired and have too much brain fog to figure it out--plus I hate to leave my house--so going to the store is almost more than I can do.

[kevieb]

The only time I get particularly thirsty is in the evening right before I go to bed--can't figure that one out.  Of course, i almost always have to get up during the night and pee.

Years ago, when the bladder problems first started, and I was having to go pee so often, my doctor mentioned something about syndrome of inappropriate anti-diuretic hormone secretion---not sure what that meant. Back then, I think I would get thirsty and want to drink more often when I was peeing more often.

Most days I don't really want to eat or drink until evening.

[horselip]

Hi Again-
With my DI I am thristy all of the time and pee 300-400cc of fluid every 1/2 hour. It never stops, even at night. Without medication i drink and pee ~3 gallons of fluids a day. This is because my pit gland does not make the hormone called Anti Diuretic Hormone (ADH). ADH tells the kidneys to concentrate urine.

So I take synthetic ADH which is called Dessmopressin or DDAVP esp at night or I will be up every 1/2 hour guzzling fluids and peeing. During the day, if I am home, I sometimes don't take it but drink/pee a lot. The thirst is hard to describe but it is all consuming. I want cold cold.cold. I'd drink ice if I could.

It is a very very odd condition.
Horselip

[kevieb]

I guess I fall in the unknown category, since my MRI showed nothing.      

I get something that happens to me occasionally that seems similar to diabetes insipidus.  I will have to pee every 20-30 minutes and my bladder is full when i go, it is not just some little trickle like you would have with an infection.  This can go on for an hour or two and then go away.

I also have an extra sensitive bladder--i have to be very careful about eating anything acidic, or I have to pee all the time, but my bladder is not so full--more just irritated.  i can usually drink some baking soda in water when that happens and it will usually go away within a short period of time.

How do you treat your diabetes insipidus?

[horselip]

-how do the pain killers affect hormones? Theu inhibit the sex hormones and maybe more. My endo told me this. Also i have Diabetes insipidus and it went away when I was on hiigher doses of opiates.Now it is back full force.

Both my endo and my most recent doc tested growth hormone with a blood test----I have never heard of a stimulation test for it---what is it called?  There are different stim tests for Growth hormone, but and endo can order the right one..it is kind of like the ACTH stil test in that they test your baseline Growth Hormone and cortisol. Then they. inject you with a stim agent and then test after 30, 60 and 90 minutes to see if you respond.

What exactly do you mean by SUBTLE issues with the pituitary gland?  I mean that there are folks with adult growth hoimone deficiency who don't have a tumor or cyst but their pit g;and is not working right either, from Sheehans or something that is unknown.
Horselip.

[kevieb]

horselip--I have been thinking all day about whether  or not it might be the ADD medication change that is making me feel so much more exhausted---we must have been on the same page!!!

I have heard that stimulants really thrash the adrenals, but i assume that since I already have to take HC that i really don't have to worry about that issue.

I had been taking vyvanse since a little over 4 years ago.  i was on 70 mgs and doing great. We lost our insurance, and my hubby didn't want me to go off of it---so we shelled out approx 125-150 bucks a month.  I was able to go back on the vyvanse eventually.

I had been diagnosed as ADD when I was 40, but the psychiatrist also told me that they use stimulants on people who are on narcotics to counteract the sleepiness they cause.

The psych that put me on vyvanse felt it might also help my depression----I was getting so much done at first it was amazing---the initial "amazing working ability" wore off---but it definitely helped me be much less tired.

I tried to take an antidepressant about a year and a half ago----I al;ways have a difficult time with side effects when I start them---they give me the jitters and make me very anxious---this one caused me to get the shakes everyday---even well after i had quit trying to take it.

I eventually figured out it was the vyvanse that was causing the shakes.  I am wondering if that antidepressant caused some sort of change in my body that did not go away.  I was opening my vyvanse capsule and taking about 1/3 of the powder and I would often have to take clonazepam to get rid of the shakes, but I think I did better taking a less amount.

It costs me about $85 dollars after insurance, that's why I tried to switch to a generic, shorter acting one---and I still have to be careful about the shakes----but I'm not functioning very well at all because I am so tired all day long.

I am thinking tht maybe I may need to go back on the vyvanse, but at a lower dosage---maybe I could get my doc to give me a weeks worth of pills to try--then it won't cost me a fortune if it doesn't work.

For some reason I have been able to take less of my narcotics recently---every so often, I seem to have less pain for some reason and will be able to take less medication for a little while---how do the pain killers affect hormones?

Both my endo and my most recent doc tested growth hormone with a blood test----I have never heard of a stimulation test for it---what is it called?  I know I have a cousin who has been on it for some reason--I think she had to quit because of the cost-----wondering if there is something that runs in our family.

What exactly do you mean by SUBTLE issues with the pituitary gland?   Is it possible for the gland to kind of have a "short"? and sometimes kick out hormones and sometimes not work properly?

You've given me some really interesting info to think about---I think it's interesting you were thinking ADD meds at the same time I was.

sorry this was so long.

[horselip]

u won't know the cost of the med until you find out. The brand i use picks up my copays thru their patient assistance program, so my cost is zero.

[horselip]

Hi again-
Its hard when you've got multiple conditions to know what meds cause what. I want to caution you to really try and only change one med at a time so that you can better isolate what causes what to happen in your body.

The test for Growth hormone deficiency requires a stimulation test. I would try and push to get one. Low GH affects mood, stamina, body composition and so much more. It is very subtle and often overlooked by endos.

I am in a support group for folks that have adult growth hormone deficiency and many of the members have subtle issues with their pituitary gland. It is not a "cure all" by any means. But many folks are able to go off of antidepressants, antianxiety meds, AND get better control of the other hormones in the Hypothalamic axis once they start at even low doses of the medication.

You've also mentioned in other posts that you changed your medication for ADHD. Maybe this has got something to do with your low energy levels too?

i also have chronic pain issues like you. I recently went thru a opiate wean. And while I still need pain meds, I've been able to reset my tolerance. One thing that became clear was that the opiates were affecting some of my hormones too.

So it really is a tangled web. I feel for you but wanted to share some thoughts that might help you to move forward and get urself feeling better.
Horselip

[kevieb]

according to my doctor my growth hormone is low, but he felt like it would come up when the rest of my endocrine system was more in balance, so growth hormone is not something I am taking.

I hear it is pretty expensive, even with insurance, if they will cover it.

Sure wish this was easier to figure out........

[horselip]

Oh and I do take a nap every afternoon around 4 pm. It is part of my routine.

[horselip]

I can only speak for myself. I am panhypopituitary and my pit gland is a lump of coal. I take 10 to 15 mgs of HC per day depending on my activity levels. I've experimented so much over the years. ive even tried prednisone and low dose dex. I've messed with timing you name it. For me 10 mg when I wake up pretty much covers me. I take an extra 2.5 to 5 mg if I am more active than usual around 2 pm or if I know that I will not be going to bed at 9 pm like usual. If I take more, it affects my sleep.

My thyroid is stable and I take 175 mcg of T4 plus two cytomel a a day.

are you in growth hormone too? That's usually the first one to go if u have pit probs and maybe that is the missing link.

Horselip

[kevieb]

I had the exhaustion and depression--and a bunch of weight loss when my cortisol was low.  sometimes i think my body just doesn't do anything normal.

I am curious about how iron and ferritin come in to all of this.  My ferritin levels are a bit lower than my doc would like---but i know that he is a little different and doesn't goes by "lab normals", but he goes by levels for optimal health.

I have noticed for quite a few years, whenever I have a CBC, most of the things that have to do with red blood cells are in the low--normal range--this has always seemed a little strange to me since I have not had a period in 7 1/2 years since my hysterectomy.  I sometimes wonder if I neeed more iron in my blood to carry oxygen.

My doc mentioned that they often see people make big improvements when they get their ferritin levels up.  My last level was 79---he says the ideal is 130 -150. So according to how he is treating me, i am still pretty low.   Not sure what to do now that he is out of commission.

My GI wants me to stay on iron.

[rumpled]

I don't know the right answer nor do I think the answer is out there yet.

I participated in a hair study where they studied the cortisol levels of healthy and those on replacements. I don't know if the study has been published - but what was told to the participants was that they found that they were totally surprised in that they always thought the normal was 20mg cortef, but the normal people actually had the equal of 10-12mg. Men really over-replaced but in general, the dosages given over-replaced for normal.

So, you may try to experiment with LESS as well with more - as sometimes more can give you the whammy of Cushing's and it does not take much in some people. Exhaustion, depression are more signs of high cortisol.

Healthy diet, a bit of exercise, fluids, rest, and try to do the best - but not to put yourself in danger -I am just saying sometimes adding is not always the way. I go for salt, vitamins etc. and leave my extra for illness and nausea.

It is hard to learn the *new* body and figure it out.