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An Update On Me.....

Canadian Karen

By Canadian Karen
in Coping with Celiac Disease

Recommended Posts

Canadian Karen Community Regular
Canadian Karen
Posted

Okay, here's the scoop since I haven't done an update in ages..... in fact, I have hardly kept in touch with anyone, just withdrawing into myself, which I know is the worst thing for me to do.

Anyway, I got some great news and not so great news when I went to see him Monday. He had the pathologist pull my slides of my biopsy for further review. The report that he got back is that there is NO INDICATION of cell change, indicating Type II Refractory Sprue (for those not fully up on this, there are two types of Refractory Celiac Sprue, Type I and Type II. Type II is the one that cell change has already taken place and the prognosis is not good - within five years usually it will kill you.) So, all in all, GREAT NEWS!!!!!!!!!!

Not so great news:

1) My iron is not even registering, so IV systemic iron is next.

2) He is sending me for a cortisol test next week. He indicated he believes that I could possibly have Addison's Disease, based on what has been happening to me lately.

a) I can hardly get off the couch or out of bed half the time and I have never felt such profound exhaustion in my life. I am such a "go go go" person, this is totally opposite to what is "me".....

B) My blood pressure, which has always been on the low side, is now getting lower and lower.

c) I am craving salt ALL THE TIME.

He believes that maybe my spastic immune system has taken up new targets: my adrenals and my pituitary glands. It's already done a number on my gut and my thyroid, I guess it has decided to move on! <_<

After reading about Addison's, I have to admit, it does sound an awful lot like me..... :unsure:

Well, we will see after the test results come back.

Hugs to all,

Karen

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blueeyedmanda Community Regular
blueeyedmanda
Posted

Well, good to hear about the sprue!!! That is great news. The other news, although not great it could be much worse and it seems like everything will be taken care of. My sisters Iron wouldn't register either and she was on iron pills and they were high dose since she was pregnant. It was very scary with her for a few weeks.

Canadian Karen Community Regular
Canadian Karen
Posted
  • Author
Well, good to hear about the sprue!!! That is great news. The other news, although not great it could be much worse and it seems like everything will be taken care of. My sisters Iron wouldn't register either and she was on iron pills and they were high dose since she was pregnant. It was very scary with her for a few weeks.

From what I have read, it is manageable, thank God....

Although the prospect of me being on steriods for the rest of my just has me jumping for joy. <_<

The last time I was on prednisone, it was not a pretty sight! :o:ph34r:

Lisa Mentor
Lisa
Posted

Karen,

It is sooo great to hear from you. We sure do miss you.

It sounds like you finally have a doctor who knows that he/she is doing. I know that you have been waiting for some answers for a long long time.

I am going to look up Addisson's. But, I wanted to let you know that I think about you often and need you to get back into the swing as soon as you can. It's just not the same place around here without you. :(

Hugs back

mamaw Community Regular
mamaw
Posted

Hello Karen

sorry you have not been doing well..... some of your symptons sound just like mine but my problems are coming from my thyroid...

Addison's can usually be controlled . I will keep you in my prayers & please keep us posted on how you are making out..........

Hugs to you. BY the way I LOVE your avatar......

mamaw

Ursa Major Collaborator
Ursa Major
Posted

Karen, your info is confusing. You are saying

The report that he got back is that there is NO INDICATION of cell change, indicating Type II Refractory Sprue (for those not fully up on this, there are two types of Refractory Celiac Sprue, Type I and Type II. Type II is the one that cell change has already taken place and the prognosis is not good - within five years usually it will kill you.)

According to what you are saying here, you have the type that will kill you in five years, yet that is good news? I suspect that there is a typo in here.

When you get the testing for Addison's done, make sure you get at least two draws of blood for the cortisol levels done that day. In fact, four is even better. The first one at 8:00 AM after fasting, the next at noon, the third at 4:00 PM, and the last at 8:00 PM. But you should at least have the one at eight in the morning and at four in the afternoon.

Also, you need to have your aldosterone level checked. Two of the symptoms of low aldosterone are low blood pressure and salt cravings.

I was also craving an insane amount of meat. Now I know why. When your adrenals aren't functioning you pee out most of your protein (and your salt, hence salt cravings).

I now take 25mg of hydrocortisone (to make up for the cortisol my adrenals weren't making) and 0.15mg of fludrocortisone (because of extremely low aldosterone levels) a day, and I am doing sooooooooo much better! Also, now I am able to handle my thyroid meds, because my body couldn't use them before because of adrenal insufficiency (one type of Addison's disease).

Please be aware of our crazy lab's interpretations here in Canada. My cortisol levels came back in the lower third of the so-called normal range (actually, anything in the lower third is definitely NOT normal). The 'normal' range for aldosterone here is 60 to 780 (an insanely large range). If you do research you will find that actually, anything below the upper third of that range is reason for concern and needs to be addressed. My level was 73. A long way from the upper third (in reality, anything below 500 is a problem).

My doctor had a nurse call me to tell me that 'everything came back normal, and nothing needs to be done'. I went and got my copy of the results (which came back just before I went to Germany for six weeks) and took that copy to my brother's doctor in Germany.

This doctor took a look at those levels, and immediately exclaimed, "Wow, those are dangerously low levels, something needs to be done immediately!" And I had a prescription for Fludrocortisone within a minute (quite the contrast, eh?). He didn't prescribe hydrocortisone, because I had already gotten it from an Internet source and was taking it before I got to him. Otherwise he would have prescribed that also.

Before I started taking those meds my blood pressure was falling by the day. It had gone down to 90 over 55 by the time I got to him. Within two weeks of taking the medicines it was back up to normal (around 120 over 80), and have been normal ever since.

I was also feeling like I wasn't going to live much longer (which was likely true) at the rate I was deteriorating. Now I am doing much better. Not great, but tolerably well.

I hope you figure it out and feel better soon. If you need more info (on dosing and other stuff) send me a PM, and I will give you my phone number, you can call me any time.

happygirl Collaborator
happygirl
Posted

UM: I think what K is saying is that there is no cell change, AND cell change would indicate type 2. I think she put in the modifier because most of us wouldn't know what no cell change really meant.

Karen, I am glad to hear your update. I am sorry that you are going through so much. And like MG said, we definitely miss you on here.

I sincerely hope that they find answers to your situation. Please keep us updated and don't retreat.

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Judyin Philly Enthusiast
Judyin Philly
Posted

:o IT'S KAREN...I'M SO GLAD TO GET AN UPDATE.

DON'T COME ON LINE MUCH BUT THINK OF YOU OFTEN.

THANKS FOR LETTING US KNOW YOUR LATEST INFO

PLEASE DON'T BE A STRANGER..WE MISS YOU HERE.

JUDY

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Glad to see you! I've been thinking of you...

Sounds like you are on the right track, and Ursa is an excellent source of knowledge and advice.

I also thought that salt cravings had something to do with low thyroid? Then again, low thyroid could be caused by Addison's. couldn't it?

I hope you feel better VERY soon (like, NOW), and please keep us posted!!!

aikiducky Apprentice
aikiducky
Posted

Karen, thanks for the update! I had wondered how you were doing.

Pauliina

Phyllis28 Apprentice
Phyllis28
Posted

Karen,

Hope you feel better soon.

loraleena Contributor
loraleena
Posted

Can you take something natural for your adrenals? I use a product called Isocort.

  • 3 weeks later...
Canadian Karen Community Regular
Canadian Karen
Posted
  • Author

Okay, just got off the phone with doctor's secretary:

Cortisol - 264

ACTH - 3.1

She said there was no problem with those numbers. I was SOOOOO sure we were onto something here! :angry:

Ursa Major Collaborator
Ursa Major
Posted

Only one cortisol number? When was it taken? One is way too little and doesn't prove much one way or another.

And what about the aldosterone? Low aldosterone causes low blood pressure. He should have tested for that!

These numbers just prove that your doctor is ignorant when it comes to adrenal fatigue. Ask to be referred to an endocrinologist. Or order the kit for saliva testing online, it is way more accurate.

Green12 Enthusiast
Green12
Posted

Karen,

I have often thought about you, wondering how you were doing.

I assume from your original post it meant that more damage had not set in according to the biopsy? That is really great news!!

I hope that you will hang in there and keep searching for the answers, and there is always support to be found on this board in those dark down times :)

L.A. Contributor
L.A.
Posted

Ugh. Hope things turn around soon. Rooting for you from downtown Brooklin! L.A.

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