Could my HC dose be too low?

[Sunshine_67]

I've been on 5mg HC for about 3 weeks now and I'm not feeling any better. I still struggle to get out of bed in the morning, I'm still very foggy in the head and bright lights bother me now more than ever. I'm also still having trouble falling asleep at night and wake up at least twice during the night. I don't know what's going on.

[rumpled]

Let us know how the appointment goes! Good luck!

[Sunshine_67]

Just found out the pituitary clinic needs a doctor referral so fingers crossed my doctor is willing to refer me. If she does, their first available appt isn't until Feb. 21, so I have a while.

[horselip]

http://www.medhelp.org/forums/Brain--Pituitary-and-Skull-Base-Tumor-Forum/show/994?controller=forums&action=show&id=994&camp=msc

I won't get all excited yet. Just hope this one isn't a dud.
Horselip

[Sunshine_67]

Thanks. Don't get too excited yet. I haven't met an endo who really and truely knew how to treat thyroid and adrenal hormones properly yet.

What thread is Dr. Prevadello under? I do have a CD.

Well, can't really measure my pee unless it's on a weekend. I'd rather not have my co-workers see me carrying a jug into the bathroom every time I go in. :-)

[horselip]

Oh Sunshine67-
I so hope that you've found an endo who is not a dud!!!! Sending positive thoughts your way on this.

There are different levels of DI and you may not have it as bad as me.
Try writing it all down for a few days...
what you drink,
# of ounces,
time if day and

Same on your output:
Measure how much you pee and the time.

*You can get a special plastic thing that you put in the toilet to catch the pee from any ole lab. There are several lab tests that require capturing your urine. Put no restrictions on yourself and just see what it all adds up to.

Oh I am so glad that found someone.....YAY!

Do u have the MRI on a cd? If not call the place that did it and have them make you a copy. Then you could send it to other doctors like the one who has a thread here on MedHelp to take a looksie. Dr. Prevadello is his name.
Horselip

[rumpled]

The kidney doc may also do the testing for the excessive urination.

Let us know about the pit doc visit. It may take a while to get in. You have enough abnormalities to get in as I know mine covers female issues and bone. There are bone endos too but not many.

[Sunshine_67]

I just read online about a pituitary specialist, so I'm going to try and see her. Even though my MRI's came back normal, my pituitary can't be normal if I've never produced any female hormones my entire life and have had thyroid and hypoglycemia problems my entire life and got osteoporosis in my 30's. Something has to be wrong with it.

I wouldn't say I pee gallons a day, but after only drinking a little bit of water, I pee more than what I took in.

No, I've never seen a kidney doc, but my creatine levels are normal.

[horselip]

I went though many endos before I found the right one. And yes you are right many use TSH as a guide to the thyroid with pit patients, it's crazy. You've gone through six, eeks. Good luck!

Usually with the Water deprevation test, they stop it once it is clear that you continue to urinate even when you don't drink. Then they try DDAVP or desmopressin to see if it helps. I am very thankful that i can take DDAVP at night now or I would not sleep!

You should see that look on the nurses faces when I am in in the hospital and on a catheter. They bring in their friends to show what "DI" really is and how urine I really make!!!!! Gallons a day.

Good luck in whatever you do
Horselip

[rumpled]

There are some doctors that will look at the scans for free or for a nominal fee. The doctor here that posts sometimes may look for free if he thinks you have a case (he does sometimes) and I know some other doctors who do but it takes time and some want a referral.

TSH only is a red flag in my book - that means they don't know enough about the thyroid let alone any other hormones. As for high vs low BP - I had Cushing's and my BP was low. My hump was tiny. I have met people with humps and without them - in other words - symptoms vary a LOT so you may or may not have any symptom including weight gain. I never got the moon face, cholesterol issues, glucose, BP etc etc etc. but I got healing problems, thyroid imbalance, acne, red face, striae, etc etc. I did not gain weight in the beginning but later on.

I would track your water. Have you seen a kidney doc?

[Sunshine_67]

I've seen at least 6 different endos in the past few years and every one of them treated me based on the TSH only. Because of my pituitary and hypothalamus disorders, my TSH is always suppressed when I"m on thyroid meds. They didn't believe me and made me sicker until they told me they couldn't help me anymore. I looked on that website and there were only 3 doctors. Two of them are surgeons and the other is a regular endo, not a neuroendo. All endos are trained to look at the TSH. They are not trained to properly treat thyroid, nor do they even believe in adrenal fatigue.

I don't think I could take a water deprivation test. If I go more than an hour without drinking water, I feel very dehydrated and lightheaded. I think that would scare me.

I've thought about getting someone else to look at my MRI scans, but I can't afford it right now.

[horselip]

I think that you need to prioritize and get thee to a neuroendo.

The hormone cycles are all interconnected  this type of doctor is much more likely to be able to solve your puzzle. It sounds like you def have pituitary probs and a lot going on. I read some of your other posts re thyroid. Your thyroid will never stabilize if you have Cushing's.

It might be an adenoma that is not showing up on MRI's, you have a genetic mutation, or it could be that your head got banged at some point and this damaged the pit gland.

I know folks that lost pit function from minor car accidents where they just bumped things wrong..

Altho Cushings adenomas are notorious for being small.....and hard to find. Loss of diurnal rhythm is a big clue. You need more testing and cortisol is not going to help. You could be tired because of thyroid, growth hormone and/or Cushing's.

You might also have diabetes insipidus. I have this and when i don't take meds I pee and drink every 20-30 mins. This can exhaust a a person, especially at night. The standard test for this is called a water deprivation test. You could do is track your input and output...drinking as much water as you need. This right there might show a pattern that would justify formal testing for DI.

There must be some good endos in NC? It did a quick check on the Pituitary Network Association's Web site and a few came up.

Horselip

[Sunshine_67]

Oh I definately have a pituitary disorder. My female hormones have been super low since I was a teenager and I've hardly ever had regular periods.Can you have Cushings without a pituitary tumor? I've had 2 MRI's and no tumors showed up, unless they're too small to be noticed.

My insurance doesn't cover doctors who work at universities. They're considered out of network and my deductible is so high, I'd be paying out of pocket. I'm already broke from seeing docs for the last 4 years and getting nowhere.

I've been reading up on Cushings and it says almost all have high blood pressure. My bp is low. It also said cholesterol is high and mine is normal, although my HDL is too low. I don't have most of the physical symptoms such as fatty hump on back or round moon face.

My cortisol was too high in the morning just two years ago, so I think it's too low now because my adrenals are burning out.

I don't have sjogrens, I've been tested for that.

What treatment did you do?

[rumpled]

Uh, low cortisol in the morning and high at night is pretty classic for Cushing's. That was how my Cushing's was - I had Cushing's disease (pituitary source). You have a loss of diurnal rhythm. To take steroids on top of Cushing's is going to make you worse.

Try the links in the health pages that have doctor links, or call up a university as they have pituitary centers - and larger hospitals do as well.

That much drinking and peeing sounds very suspicious for a pituitary disorder - or for sjogrens. You need to see a proper doctor. Your health is very very important.

[Sunshine_67]

No matter how much I drink (which really isn't as much as I should) my throat always feels dry. When I do drink, I have to pee within 30 minutes after. I have read that low estrogen can cause you to not be able to hold your urine so maybe that's the cause. I'm not seeing a neuroendo. I live in NC and don't know where one is. I can't drive more than 30 minutes for any appts because I can't miss too much work, so I'm pretty limited to only docs in my city. I don't think I have Cushings since my last two saliva tests showed my cortisol was very low in the morning and high at night.

[horselip]

Hiya-
define thirsty and urinate a lot. If it is gallons of water a day you could have diabetes insipidus. It is a deficiency in the hormone called Antidiuretic hormone, which is made by the pituitary gland.

Also it sounds like your diurnal rhythm in making cortisol is off. You might actually have Cushing's so you should ask for more testing on your cortisol etc. The last thing you want to be doing is taking cortisol if you have this.The symptoms of Cushings feel very similar to adrenal insufficiency. Do you have a neuroendo working with you? They are specialized endos for folks who have pituitary and/or adrenal probs. There are not that many of them out there but I rec that you find one if you don't have one.

Good luck!
Horselip
That buzzy feeling of you making too much cortisol at night, is what is keeping you up, i think.
Horselip.

[Sunshine_67]

I haven't had a stim test but have had saliva tests. Last one showed cortisol too low in the morning and too high at night. My sodium was on the low end of normal on my last labs and I am thirsty a lot and urinate often, but I don't have diabetes.

[rumpled]

There could be a number of factors. The dose could be too low. 5mg is not a standard dose. Usually I hear of 15 to 30mg! It could be taken at the wrong time (why the trouble sleeping). You may also need florinef to hold on to salt as it is essentially a salt-wasting disease and the sodium levels are still too low to feel well.

If you are having trouble sleeping maybe your cortisol is up at night and you are low during the day - were you diagnosed with a stim test and a lot of testing, antibodies etc.