McBlonde

Those thyroid numbers look like mine! Central hypothyroidism. Here is a copy of info my doctor gave me with what kind of thyroid tests you need and what your numbers will look like if you have central hypothyroidism. Hope it helps.

http://www.goodhormonehealth.com/Hypothyroidism-final.pdf

http://www.goodhormonehealth.com/Chapter%204%20Hypothyroidism.pdf

I'm starting to confuse myself about the Florinef I take. If I continue to be thirsty, crave salty things, and peeing out all that I drink, and still can't stand does that mean the Florinef is not working?

That's interesting! One night out of the blue I saw a kind of flashing lightning out of my left eye. When I got it checked out, the eye doctor said I had lost the vitreous in my left eye. You're right .....like clear jello.

Dr. Sanjay Gupta did a great special on concussions a couple of months ago. They patients got theirs playing sports, but the info on concussions was really interesting, especially if you get injured again before your concussion is healed. Maybe it's available online at CNN? I think you would find it informative.

Take care!

Rich... You may already know this, but be sure and read about Activities of Daily Living.. http://en.wikipedia.org/wiki/Activities_of_daily_living

That's the perspective they look at things from...rather than "You have a disease.What are you symptoms" Study those and be able to articulate how you can't do X activity, because when you do Y happens.

That is excellent advice. Don't waste your time, precious energy or money on these clowns. You are better off saving and going to a doctor who is experienced. The emotional and physical toll it takes on your health is not worth it.

Wow.....that's crazy isn't it? Is he an idiot? (rhetorical question) . Instead of want you, the patient, to send in studies, why wouldn't he want to see you and examine you while sitting? If you throw up on his shoe like I did, that should get his attention. Seriously.... he is your doctor. HE has to know what is happening to you while you are sitting or otherwise, how is he going to treat you. Another thing.... if he knowingly doesn't check this out, and you have a car accident while sitting and driving, he's going to be in some liability trouble with the state. So sorry that you, too, are dealing with this.

Thanks, Issie. I do have the labs set up for in the morning, but they said they would call when the insurance gives approval for the rest. I had called my insurance before I left home to ask how it works when traveling to Mayo out-of-state, knowing that they will probably want to order tests, imaging or procedures. The insurance said that it was not complicated, that things could be approved immediately in "most" cases. So, I am hoping that I get that call tomorrow from Mayo to go begin all this stuff. The scheduler at Mayo said it could take up to a week to get things approved, so was not to keen on sitting around for a week doing nothing.

Oh, I hope you change your mind if the cardiologist was Dr. K!!

I thought I was the only one. Symptoms from sitting was what changed everything.

Prior to 2009 I had orthostatic hypotension secondary to an endocrine disorder which included extreme fatigue. My life was limited, BUT is could function at work if that was all I did.

Then in 2009 while driving home I got a horrible orthostatic headache and then nausea. I also felt sorta out of it "like..where am I?" The usual story... continues to get worse... I can't figure out what's happening.... see a lot of doctors... By a crazy twist of fate, I see an endo for a release for a surgery I was to have and low and behold, he did a poor man's tilt table and told me I had POTS. It turns out that he was a POTS researcher from West Virginia.

I don't know what happened. What changed. How I have both orthostatic hypotension and POTS. I just know that since that time I can't drive. I can't work. I can't concentrate. Sitting is almost worst than standing still. It leaves me really non-functional and the symptoms sitting are always the same... Headache, then nausea so bad that I have to lie flat to get relief. I am assuming the symptoms that occur when I sit are from the high heart rate but I don't know that for sure.

Very good point, Doozlygirl. That's also why there are so few POTS specialists....sadly, not profitable.

Mcblonde, yes, it happened when I picked up the nasty habit of smoking at bars. Quit and it went away.

Well darn! I have it without smoking or asthma! It doesn't cause me any problems that I know of.... I always just thought it was a little weird to have too much carbon dioxide in me!

How about your aldosterone? That's the one that will usually causes low blood pressure.

Here is a link to hormones and the symptoms of having too much or too little

http://www.goodhormonehealth.com/symptoms/gland_hormone_symptom_table.html

Endos are really the worst. I have spent years and thousands finding out just how clueless most are on anything but diabetes and thyroid. If something is wrong with your pituitary, you really have to find someone that specializes in pituitary diseases and the good ones are few and far between. It sounds like you might be having/ adrenal insufficiency secondary to pituitary disease. Are any of your other pituitary hormones messed up?

My last ACTH/cortisol AM test was ACTH 104 and cortisol 5. So, the harder it is for my adrenal gland to make cortisol, the more ACTH is pumped out.

Our message systems are just all messed up! I am so sorry you are going through this, too!!

doesn't the CO2 range in percentages? Mine is always at 99% if that's what you're referring to

35 H MEQ/L (23 - 30) Normal Range

Has anybody ever had high CO2? I have for years and it keeps getting worse (higher)

I also have a 7mm pit tumor, but many of my issues started before the endocrine stuff (symptoms from a child) but the BP and sugar issues both started together and after a med I think hurt my pituitary

You didn't happen to take Dostinex did you?

Do you have your ACTH and Cortisol lab results and the lab range? Also, have you had your thyroid checked....as in TSH, Free T4 and Free T3? Sorry you are feeling so bad!!

my last AM labs where less than a month ago ACTH 8 (6-50) cortisol 10 (5-35) I have had low aldostrone in the past too.

last endo said it was my beta blocker causing the low BP but I halved the dose and even skipped and it makes no difference. 75/45 is too low but they say endocrine needs to fix it.

on thyroid pills and levels are Ok at the moment

Ok, so those are still within normal limits. so that's good. I wasn't able to take the beta blocker. I started out on the lowest dose and halved it and then cut it in 4ths.... still BP was too low. Are you drinking plenty of Gatorade, water and salt?

Gained when on Beta Blocker.....

Do you have your ACTH and Cortisol lab results and the lab range? Also, have you had your thyroid checked....as in TSH, Free T4 and Free T3? Sorry you are feeling so bad!!

Good luck! Hope you have an excellent visit and beautiful weather while you're at it!

I would advice an endo. Make sure they run the antibody test TPO and for Grave's, a TSH and Free T3 and Free T4. For many people, the generic thyroid meds do not work. I have to take the brand name. Best of luck to you!

Wow, that's great that Midodrine is working for you! I would LOVE to have those kind of side effects!! The only thing that Midodrine gave me was the mother of all headaches! So crazy how different all of our responses are to the same meds. #CrazyPOTS

Besides nausea, fatigue is one of my worst symptoms. I have been fighting it for 8 years. I have done everything that is mentioned here.... unfortunately it's still one of my worst symptoms. One thing I know for sure that made it worse was the beta blocker Bystolic. It did control my tachycardia, but it made me feel like death warmed over.

Do either of you know if the first symptoms when the nausea hit was from the low BP or the high HR?

Sort of. My symptoms changed in 2009. Prior to I had been diagnosis with orthostatic hypotention and symptoms appeared when I stood up. In 2009, while driving home from work, I began having a terrible headache, followed by nausea and a feeling of being disoriented to place. I get home and feel exhausted with the headache and nausea hanging on.... Since that time, no matter what I do or medicines I take, sitting in an upright brings on those symptoms every time. I don't know if it's the high heart rate or dropping blood pressure that causes these symptoms. It's SO frustrating!

That's great! Where is Dr. Abdallah ?