So confused

Forum for Addisons and diabetes related issues.

So confused

Postby jen » Wed Mar 07, 2007 2:08 pm

Hi, I am 22 and was diagnosed with Addison's disease in August of 06. I was also diagnosed with hypoparathyroidism around the same time as the Addison's diagnosis. I have just been spending the past few months learning my what my body is telling me, if you know what I mean. My doctor believes that I have PAS, but is not sure if it is type 1 or 2 because I also had problems with human growth hormone as a child and was on therapy for that for almost 5 years.

Well, I went to my endo for a regular check up this week and my sugar levels were high, so my endo is suspecting that I may have Type 1 diabetes. I went today for another blood test, this time with fasting. I also just found out that my potassium levels were really low, low enough to cause tremors in my muscles. I am 4'11'' and 85 pounds with my body fat being 17%, so I am not sure how I can really change my diet if I have diabetes.

What I am wondering is how everyone with addison's disease and diabetes coping. Do you feel sick a lot, is it hard keeping your blood sugars where they are supposed to be when the cortef for addisons can alter it? Do you feel you have a "normal" life? I have had a hard time dealing with my first two auto-immune diseases and the thought of having diabetes too terrifies me. I want to have kids one day and wonder if this could affect it.

Thank you!!

Jen
jen
 
Posts: 4
Joined: Tue Mar 06, 2007 7:22 pm
Location: Orange County, Ca

Postby Wanda » Wed Mar 07, 2007 9:58 pm

Jen,
Please tell us what you are taking for your addisons, how you split it. Amount & times of the day.

You could try taking cinnamon capsules to help with the sugar level. I started it a few weeks ago after a friend's doctor recommended she take it. Check with your doc. I take mine in the "middle" of a meal. Once or twice a day.

Wanda
Wanda
 
Posts: 180
Joined: Tue Dec 23, 2003 9:09 am
Location: Oregon

Postby jen » Wed Mar 07, 2007 10:12 pm

I am on 20 mg of cortef in the am and 5 in the afternoon. I was on 15 in the am until this week, my doctor decided to increase it a little to see if I felt better. I have never heard of cinnamon tablet before, the diabetes thing is so new to me. Like I said, I haven't been diagnosed yet but I am expecting the doctor to confirm it. I just feel so lost on what to do next.
jen
 
Posts: 4
Joined: Tue Mar 06, 2007 7:22 pm
Location: Orange County, Ca

Postby Wanda » Thu Mar 08, 2007 9:58 am

Jen,
I take smaller doses to try to avoid sugar problems. I take Hydrocortisone, 5mg about 30mins to an hour before getting up, 5mg when I get up, 5mg at noon & 5mg at 5pm. Hydrocortisone is generic for Cortef. Many of us don't do well on Cortef, but many do.

It takes time to find what works for you. We are all different.

Are you taking Florinef? Are you primary or secondary? Are you adding salt to your food & drinking at least 8 cups of water daily?

I take cinnamon to help with sugar metabolism & to lower my triglycerides. There is lots of info available to confirm it helps.

You are so tiny it is surprising to hear you have a problem with sugar. I would have the test a couple more times to be sure there was no error.

Take care,
Wanda
Wanda
 
Posts: 180
Joined: Tue Dec 23, 2003 9:09 am
Location: Oregon

Postby SueM » Thu Mar 08, 2007 11:19 am

Hi Jen you would prob feel better splitting your dose into 3 amounts.
Re the cinnamon if you are a type 1 save your money it only works for a type 2.
It doesn't matter what size/weight you are to develope type 1. I think Wanda is getting confused with type 2's.
Having type 1 I found I could not get on with hydrocortison as my meds ran out as my insulin peeked so was always on a roller coaster. I personally found switching to prednisolone worked wonders for me.
But you have to remember that everyone is dif so what suits me or Joe Blogs might not suit you.
Having type 1 diabetes does not stop you eating all your fav foods either :) You just have to learn to carb count and take the correct amount of insulin for that meal 8)
Best wishes
Sue
insulin dependant for 42 yrs.
SueM
 
Posts: 189
Joined: Tue Jun 17, 2003 9:38 am
Location: UK

Type 1 Diabetes & Addisons

Postby KathyK » Fri Mar 09, 2007 8:42 am

HI Jen,

Make sure you are checked for "Reactive Hypoglycemia" since you have Addisons. I have it & it's VERY Tough to diagnose, since your Sugar "Soars" immediately after a meal, but then "Tanks" 1 to 2 hrs later. The Cycle goes on & on till someone figures it out.

I agree w/ SueM. Also, Take Chromium 200 mcg's a day (lot's on the net about it & many Doc's are now suggesting it for Sugar Control). Also TEST your Sugar OFTEN. If you don't already have one Invest in a Meter. I had to test 6 - 8 times a day to figure it out. Then once I submitted everything to a Dietician (I was a Vegan Vegetarian which made it "Doubly" Tough!) she could tell from my Sugars & my Meal Log EXACTLY what the problem was & was able to treat it right away.

So again, buy some Chromium 200 mcg immed. & start taking it (will help w/ Diabetes OR Hypoglycemia - Reactive or not) & BUY a meter & start TESTING OFTEN.

And check into taking different Steroids for your Addisons Control. I started off on Dexamethasone, then Prednisone, & just a year or so ago was able to go to Hydrocortisone.

Kathy K.
Kearny, NJ
Reactive Hypoglycemia, Addisons, Asthma, & Severe Allergies
KathyK
 
Posts: 37
Joined: Tue Jun 13, 2006 9:53 am
Location: Kearny, NJ

Hi Jen

Postby lsquittman » Sat Mar 17, 2007 1:20 pm

Jen,
It sounds as if you have APS Type 1 or APECED, another term for this. The two main glands that are affected most of the time are the adrenals and the parathyroid and you have Addisons and Hypoparathyroidism. Diabetes Type 1 is common, although not as frequent along with growth hormone issues, pernicious anemia, and ovarian dysfunction.
I don't post often because it is my 34 year old daughter who has APS 1 but at this point, if you do have this disease, it is important to get the correct endocrinologist to monitor you. My daughter has Hypoparathyroid, age 3, Addisons, age 6, Pernicious Anemia, age 26 and rheumatoid arthritis, age 14, malabsorption,since birth and diabetes Type 1 at age 33. She is 5' and weighs 79 lbs but this is the lowest she has been due to a recent bout with diarrhea. Her average weight is 96 lbs.
APS 1 is genetic and there is now a web site and message board exclusively for this disease. The web site has an ask the Dr. section with a world renowned endocrinologist answering the questions.
This is an absolutely wonderful message board and over the years many of the posters have been here for me and my daughter but APS 1 people have some different needs and I encourage you to visit the sites. I will post the links in the next two messages. Anyone else who thinks they may have APS 1 should also visit these sites, read toe posts and ask the doctor.
Best wishes Jen.
Linda Q
lsquittman
 
Posts: 57
Joined: Mon Nov 22, 2004 5:16 pm
Location: New York

Links to APS 1 site

Postby lsquittman » Sat Mar 17, 2007 1:23 pm

lsquittman
 
Posts: 57
Joined: Mon Nov 22, 2004 5:16 pm
Location: New York

Postby don » Sat Apr 21, 2007 8:20 am

The accepted dose is 10/5/5 mg/day spread out 3x a day to try to avoid spikes in blood coritsol levels. Taking 20 mg at once and then only 5 later will result in a spike that is not good for blood sugar and is not physiological.

Do you find that in the afternoon or evening you feel tired? Do you find that at night you don't have dreams or wake up often?
don
 
Posts: 27
Joined: Fri Jul 04, 2003 8:04 pm
Location: Canada

Postby jen » Sun Apr 22, 2007 7:59 am

don wrote:The accepted dose is 10/5/5 mg/day spread out 3x a day to try to avoid spikes in blood coritsol levels. Taking 20 mg at once and then only 5 later will result in a spike that is not good for blood sugar and is not physiological.

Do you find that in the afternoon or evening you feel tired? Do you find that at night you don't have dreams or wake up often?


I have been taking 15mg/day in the morning and 10mg/day in the afternoon and I am still not feeling great. I know I should try splitting it up in three, and I tried it and forgot to take the third dose on several occassions. I am going to try it again and set an alarm on my phone.

I do have a harder time in the afternoon and evening and often need to take a nap to make it through the rest of the day. I read that most people with Addison's have a hard time getting up in the morning, and I am more tired than I used to be, but the afternoons are much worse for me. I also wake up every few hours and never sleep through the entire night.

What does all that mean and thank you for your response!
jen
 
Posts: 4
Joined: Tue Mar 06, 2007 7:22 pm
Location: Orange County, Ca

Postby SueM » Sun Apr 22, 2007 11:47 am

If you are that tired all the time it sounds to me as if you are under replaced or the steroid you on is not suitable for you. Ask to try hydrocortisone or prednisolone instead.
I used to be like you tired all the time when on HC so changed to pred/HC combination and that has made a massive dif to me.

How did you get on with the diabetes test?
SueM
 
Posts: 189
Joined: Tue Jun 17, 2003 9:38 am
Location: UK

Postby jen » Sun Apr 22, 2007 1:13 pm

SueM wrote:If you are that tired all the time it sounds to me as if you are under replaced or the steroid you on is not suitable for you. Ask to try hydrocortisone or prednisolone instead.
I used to be like you tired all the time when on HC so changed to pred/HC combination and that has made a massive dif to me.

How did you get on with the diabetes test?


Do you think I should increase my medication to 30mg? I have been contemplating that, its just so hard for me to tell if I am not feeling well because I am on too much medication or not enough. I think I will mention the hydrocortisone to my dr, especially since my insurance doesn't cover cortef so I have been paying full price for it.

I ended up not having diabetes, although its still a major concern, so I have to check my blood sugar every so often. I pretty much check it whenever I am not feeling so hot, but its come back fine so far.

Thank you so much for your replies!!
jen
 
Posts: 4
Joined: Tue Mar 06, 2007 7:22 pm
Location: Orange County, Ca


Return to Addisons-Diabetes

Who is online

Users browsing this forum: No registered users and 3 guests

cron