Introduction... :)

Forum for Addisons and diabetes related issues.

Introduction... :)

Postby Sweetmama » Sun Jan 02, 2011 7:59 pm

Hello!

I am so happy to have found this board! I am 32, had type 1 diabetes for 20 years and was just diagnosed with Addison's Disease 2 weeks ago. It's been a pretty scary time as I ended up in a coma for 4 days and because the doctors didn't know about the undiagnosed Addison's, they were having trouble reviving me from the coma. Luckily I am in one piece and hoping 2011 will be a less scary year!

I am looking forward to connecting with anyone on here who would like to share their experience with both of these conditions.. and with dealing with them both together.

Happy New Year to you all.. :D

~SM~
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Re: Introduction... :)

Postby gkardel » Mon Jan 10, 2011 8:56 am

Welcome to the forum. Sounds like you had quite the experience getting Addisons diagnosed. Unfortunately for many Addisonians, diagnosis does not come easily.

You should be feeling much better after getting missing adrenal hormones replaced. Have they screened you for hypothyroidism?

Glenn
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Re: Introduction... :)

Postby mdenoon » Mon Jan 17, 2011 9:07 pm

Hey There

Glad you are 'awake' now . The diagnosis phase has been horrible for lots of people here . Now that you are taking the hc I'm sure you will
feel a lot better soon.
Do you have a good endo now ?

Melanie
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Re: Introduction... :)

Postby aliciaandbrowning » Tue Sep 27, 2011 7:41 pm

Also just joined this forum. I was hospitalised in very bad shape for 2 weeks while they figured this out. I have had a nonfunctional thyroid for 21 years. My 21 year old daughter was diagnosed with type I diabetes one year ago. I have been failing for about 6 months and during the long hospitalisation in two different hospitals they found type I diabetes and addisons. I have been putting myself back together for about 2 months. Don't feel I am ready to work. My whole endocrine system is shot. I am still struggling to manage both. Is my daughter at risk for Addisons? Alicia
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Re: Introduction... :)

Postby gkardel » Tue Sep 27, 2011 9:23 pm

Hi Alicia,

Welcome to the forum. It sounds like you've been busy over the past six months. You've passed the first big challenge and that's getting the conditions diagnosed. Unfortunately, some don't make it past this hurdle. Do you know if your conditions are autoimmune based? Any other relatives with endocrine conditions? You mention that your whole endocrine system is shot. Do you have any other endocrine conditions besides hypothyroidism, type 1 diabetes and adrenal insufficiency?

Glenn
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Re: Introduction... :)

Postby aliciaandbrowning » Wed Sep 28, 2011 5:44 am

All my endocrine issues are autoimmune. Pituatary looks okay. My daughter has both the thyroid and diabetes. Thanks so much for responding. Alicia
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Re: Introduction... :)

Postby gkardel » Fri Sep 30, 2011 2:30 pm

The grouping of autoimmune based hypothyroidism, adrenal insufficiency and type 1 diabetes is called Schmidt's Syndrome. This is a subset of a syndrome called Polyglandular Autoimmune Syndrome Type II. Other conditions can occur with PAS Type II but with much lower probability than the three primary Schmidt's Syndrome components. Here's reading on this: http://edrv.endojournals.org/content/23/3/327.full. Your daughter should definitely keep an eye out for adrenal insufficiency.

How are your diabetes and Addisons being treated?
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Re: Introduction... :)

Postby aliciaandbrowning » Fri Sep 30, 2011 7:20 pm

Injecting apidra with meals. Lantus at night. Taking hydrocortisone 15 morning and 10 at 6pm. Tried to lower the 6pm dose and had a return of atrial fib and feeling tired. I went back to 10 and I feel fine. Is this too simplistic? Do I need a different docter? Alicia
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Re: Introduction... :)

Postby gkardel » Sat Oct 01, 2011 9:15 pm

Most with primary adrenal insufficiency need to take fludrocortisone. This med replaces aldosterone which is another important hormone the adrenal gland produces. Hydrocortisone has a small component of aldosterone but it's usually not enough. If your sodium and blood pressure are low and potassium high would suggest that you need more aldosterone. Get these tested. The atrial fib could be related to low sodium levels.

If you have problems with blood sugar control on injection therapy, look into insulin pump therapy. With added control over insulin delivery and more closely mimicking insulin delivery of the pancreas, pump therapy can be a big help to handle the increased complexities of managing diabetes with adrenal insufficiency.

Has your doctor told you the importance of having an emergency solu-cortef injection kit and how and when to use it? If the doc didn't or snoozed on the above issues would give weight to finding another doc.

-Glenn
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Re: Introduction... :)

Postby NJ » Tue Oct 04, 2011 9:21 am

I agree with Glenn, you may well be needing fludrocortisone. Most primary Addison's patient do at some point. You are probably needing more than you are getting in the hydrocortisone.
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Re: Introduction... :)

Postby scott922 » Thu Feb 16, 2012 7:08 pm

I just found this site tonight. I've had T1D for 43 years and am now pumping for about 12 years. Hypothyroidism joined in about 15 years ago. They played fairly well together. The Synthroid dosage was a quarterly tweaking but only due to blood tests, not how I felt. I joined the Schmidt's club almost 3 years ago. The Addisons has been the bitch. Once diagnosed from the laundry list of complaints I brought to my family PAC (physicians assistant, clinician), blood tests showed the near-seizure levels of sodium. PAC sent me to the E.R. and they diagnosed the primary Addisons after the ACTH test showed my pituitary was okay. Four days in the hospital and I was out taking hydrocortisone (HC) and fludricortisone. All was well for over 1.5 years when thought I needed anxiety meds (ex-wife had the attacks and my symptoms a few months prior talked the PAC into prescribing some for a month as a trial - they seemed to work but I discontinued them). Blood tests showed sodium low again last April and he sent me to the E.R. They admitted me for 3.5 days. I had to bargain to be released. All they did was increase my HC and monitor my sodium blood count. I could increase my own HC at home. Like T1D I need to learn how to listen to the signals my body is giving me and act/react to them. It's been 3 weeks now and I'm trying to "land my jet" back down to normal HC dosages. I've bounced several times. Not fun. One good day, one bad. Can't string 2 good days together. I still don't know exactly what keyed the need for more HC to begin with. Perhaps a minor cold virus. Never a fever. I've been behind the eight ball since leaving my endocrinologist's office at my last regular visit. I'm intent on doing this myself. It is a bitch, but it's my bitch. Like my T1D, I must learn to live and deal with it. I learn the hard way. I look forward to reading through the history already submitted at this forum and learning from it all. Thanks for being here.
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Re: Introduction... :)

Postby gkardel » Thu Feb 16, 2012 7:47 pm

What's your dosing on the HC and fludrocortisone? -Glenn
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Re: Introduction... :)

Postby scott922 » Wed Feb 22, 2012 8:38 pm

Normal prescribed doses: HC is 25mg morning, 15mg, noon, 10mg, 4:30p
fludroic is 0.10 morning
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Re: Introduction... :)

Postby gkardel » Thu Feb 23, 2012 8:44 am

Your HC dose is very high. 20mg total per day is target dose used by endocrinologists I've spoken with and read in current med literature. You want to minimize this dose as risk of side effects increase up as your dose increases and blood sugar is more difficult to control. How's your potassium? Have you tried increasing the fludrocortisone? This med controls sodium retention and potassium excretion. When decreasing the HC dose, try it in 5mg increments staggered every three days. -Glenn
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Re: Introduction... :)

Postby scott922 » Mon Feb 27, 2012 6:35 pm

Waited for blood-work results on last Wednesday's "well-man" visit to my primary Physicians Assistant, Clinician (PAC). I received it Friday in the mail. Sodium low normal at 138. Potassium normal at 4.6. Cortisol high at 31.2 but that was about 1.5 hrs after morning 20mg HC. Endo doesn't bother with blood test on cortisol. She uses 24 hr urine collection (have done it once in 2+ years). Seems similar to NOT taking synthroid before fasting blood draw as it peaks in the blood about an hour after swallowing. I've been back down to my normal 20/15/10 HC dose mostly. I'm a numbers guy, looking for patterns and haven't pinpointed one yet. Had to stress-dose 5mg 3 times today though at 10:50am, 3;40pm and 6:50pm. I still can't point at anything causing the need. Some good days, some not so good. I had a coffee and a good chat Saturday with the lead of the NE Florida chapter of the NADF. Compared notes/experiences for a couple of hours. Great to talk to someone who lives it, like you and the others here.

My endo did mention trying a small increase in fludro but after a spot blood test decided I didn't need it. I'll ask again.
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