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07/07/2010 09:12 PM

Hi - just diagnosed with SAI 1 month ago

sunshine86
Posts: 19
Member

Hi guys,

I'm a 44 year old female with a 12 year old son. I was very healthy before my pregnancy, but about 5-6 months into my pregnancy began having problems. Hyperthyroidism, which eventually burned out and became hypothyroidism was diagnosed about 5 months after delivery, but even after that was treated, I never felt right. Over the years I developed so many symptoms, but nobody ever put it all together. In the last 2 years I've been so fatigued that I really began pushing for a diagnosis. I would wake up after 8-10 hours of sleep feeling unrefreshed, wondering at 10 am when I'd be able to go home and take a 3-4 hour nap (thankfully I only worked part time). I was nauseous, starting to lose weight, muscle cramps - esp my calves and feet, retaining water, migraines, memory and concentration problems, depressed, irritable, etc. I was beginning to wonder when I'd need to apply for disability.

Finally I got to an endocrinologist who diagnosed me with SAI (fortunately I seem to be OK with the other pituitary hormones, and I don't have any of the problems with aldosterone deficiency). I'm on a steroid now and feel much better. We tried cutting down the dose as much as possible, but I ended up back in bed again. I guess I'm very concerned about the long term side effects of steroid use as well as increasing the dose during times of stress/illness. I've put on 10# in a month and am getting grief from my husband - but like I told him - it's take the steroid or die - not much choice. My Vit D was very low too and I'm currently taking 50,000 units weekly.

How often do you guys have to increase your steroid dose and how much. Have any of you every had an adrenal crisis?

Any suggestions?Silly

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07/08/2010 06:20 AM
ITeach91
ITeach91  
Posts: 1872
VIP Member

Hi Sunshine,

I'm so glad you found our forum, welcome! You will find a group of supportive friends here who are very willing to share their own experiences. The site has been a real lifesaver for me since my own diagnosis a little over a year ago.

Your story sounds somewhat similar to mine. I first started having symptoms during my third pregnancy - heart arrythmias, fatigue that went beyond normal for a pregnancy, etc. During/shortly after delivery, something strange happened and I "crashed" - blood pressure went to nothing. I woke up to cuffs on each limb, they were working to get the blood back to my heart since my bp had bottomed out. Never found out why, I know now it was a pitutitary crisis. Over the next 19 years I tried going to endos to try to find out why I didn't feel well (I knew in my gut it was an endocrine problem and a CAT scan showed an abnormality in the bony area surrounding the pit) but they always made me feel like a hypochondriac and at least one was outright rude and hostile to me. So I gave up and went four years more, gradually worsening to the point where I was in near-crisis all the time with the same symptoms you mention - cramping, fatigue, shortness of breath, extreme cold sensitivity/low body temp, etc. It was even affecting my heart - with a very slow heartbeat which I believe was what was causing the shortness of breath. My gp diagnosed everything from fibromyalgia to arthritis to asthma. Eventually I found the "right" endo who diagnosed adrenal insufficiency and gave me my life back. I've since also added thyroid meds and I'm feeling so much better, a second lease on life after all this time.

As for your question on hormone replacement, the trick is to find the optimum dose and no more. Many of us here on the site have found it useful to spread the dose out in a pattern that more closely reflects the normal diurnal curve - cortisol is highest in the morning, so most of us take our largest dose in the am, and lowest in the evening - so we take our smaller evening dose early enough that it doesn't effect sleep patterns, etc. For those on HC, they take it three times a day. I'm on prednisone so I take it twice - 2/3 at 5 am and 1/3 at 5 pm. I'm normally on 7.5 mg/day - and do well on that unless I have an infection or other unusual physical stressor, when I need to stress dose - usually I start by upping by +50% and if that doesn't work I double and on rare occasions I have to triple dose. Usually a couple of days of stress dosing and I'm good.

The problem here, as you're worried about, is that if you get too much of the steroid it could lead to Cushings-type symptoms - weight gain, round face, increased stomach fat, weak bones...but I firmly believe it is true that if we are using the steroid as a hormone replacement and matching it as close as possible to our needs, this won't happen because our body uses the cortisol just as it would our natural cortisol and so it doesn't go to excess in the body and cause the Cushings symptoms. I've lost 30 pounds this year!

You also may find that it is hard to decrease your dosing when your body is still regulating itself after diagnosis and treatment. It takes a while - to stabilize - before you can really get a handle on your needs. I tried to decrease my dose to 5 mg/day last summer when I had been in treatment for only a few months, and I had a very bad summer/fall because of it...once you get stable, try to keep the status quo even as much as possible except for adjusting due to stress. You need to learn to "read" your body symptoms and get in tune with what your body is doing. It is crucial to your daily health.

One of the things I have found useful in managing all this - first, absolutely essential for me to eat right - small, frequent meals with protein - I eat some protein about every 2-3 hours. For some reason hypoglycemia tends to go hand in hand with this condition, and this can cause you to crave sugars and be extra hungry. (Steroid can also increase appetite). Don't give in to it! Stay away from those sugars (especially soda and sweet juices) except for on very special occasions! Eat lots of fiber, fresh veggies, fruit, protein. This will regulate your blood sugar and help your appetite/cravings not to take over. When I don't eat right, I find I need extra steroid! Not a good thing...

I also highly recommend some type of medical log - just post your symptoms, date, dosing, blood pressure, medical labs, etc...I use an online log but you can just keep a notebook if that works for you. It helps you to figure out what is going on and to tune into your symptoms/get to know what your needs are. I also keep a food log most of the time - it helps me to match my needs and maintain my blood sugar. It "catches" those calories that just add up - (one of my chocolates is 40 calories and I used to eat 4-5 of them a day - I've since backed down to 1-2 and not every day, and I'm happy).

I hope this wasn't too long for you - post any questions you like, we're here for you.

Deb


07/08/2010 06:21 AM
ITeach91
ITeach91  
Posts: 1872
VIP Member

P.S. If you do make changes to cut back, do so VERY gradually and watch for how your body reacts...it takes a couple of days to really see the impact of any decrease in dosing...

07/08/2010 12:05 PM
sunshine86
Posts: 19
Member

Thanks for all the info everyone - it's all a bit overwhelming. I definitely learned the hard way to be careful about lowering too much - I was in bed two days - at which point I increased the steroid- and didn't feel much better for a couple days after that. And bob - you guessed correctly with the weight gain - I am on dexa - I'll ask my endo about switching to prednisone +/- HC. He seems to be in favor of a one time night dose - some current paper or something. But diurnal definitely makes sense since that's how your body actually produces it.

Couple of questions? I've been surprised by the muscle cramping - I figured you only got that if your aldosterone was involved (which - at this point mine isn't) - have others of you had the cramping with ACTH the only affected hormone?

I just had my levels for electrolytes (because of the cramping), TSH and Vit D drawn - results are pending.

When you guys have a major stressor and need more cortisone or have an adrenal crisis - what are the first symptoms you notice. When I tried to cut back on my steroid, it was overwhelming fatiue and depression. I've read so much medical stuff and it seems to imply that you find the right dose, stay on it, only increase for stressors - thatlife should be good. I'm finding out and you guys seem to bear out that this is not necessarily the case.

Also - I knew this was a rare disease - but 188 members?? Have any of you heard how many people in US are currently diagnosed with Primary/Secondary Adrenal Insufficiency?Tongue


07/08/2010 12:17 PM
sunshine86
Posts: 19
Member

Wow - almost identical. Thanks for the info. I've never joined a group like this before - how do I post replys so that everyone can read?

07/08/2010 01:22 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

What's your first name?

Cramping is from dehydration from salt loss. I had the same problem with Dex and it took me a while to figure out why.

The usual caveat about opinion!

If you have "simple" secondary (thats a Bob term!) you still produce ACTH, but bad pituitary "regulation" gives you low cortisol. You do however produce enough ACTH for aldosterone production and this is what sets the salt/potassium/water balance function. The actual regulation of aldosterone is potassium linked but it is ACTH permissive.

When you take steroids it suppresses ACTH production to almost zero. As a result far less aldosterone is produced. I'll admit I haven't cross checked this for Dex (not sure exactly how it breaks down. Definitely happens for Pred and HC)

You said your aldosterone was okay. How did you establish that? Was that a test before going on Dex?

The short term workaround is to eat more salt! I carry a bag of potato chips and water with me everywhere I go.

Pred will more or less have the same dehydrating affect, except that if your cortisol falls to pre DX levels (say real early morning) you may get some more ACTH being made. Thats what happens to me. If you were to use HC it has a mineralocorticoid (aldosterone replacement) in it so the problem is far less.

If you really want to stay on a long life steroid you may have to go on the PAI aldosterone replacement fludrocortisone.

Since SAI is pituitary based you have to assume its regulation of hormones is compromised as far as testing is concerned. That means thyroid tests (like TSH) also have to include Free T3 and T4 as well.

Sudden fatigue and very sore legs are usually my first signs of low levels. That isn't consistent though. I can also get brain fog by itself and even digestive upsets.

From memory I think its a 1 in 100,000 disease. SAI is far more common because it can often be rooted in steroid abuse/overuse. TAI has something like less than 20! I dont know PAI numbers off the top of my head. There are probably only 20-30 really active members on this group but it seems maybe 50 people all up are reading posts.

Your posts are public, unless you explicitly PM someone.

Bob


07/08/2010 03:18 PM
sunshine86
Posts: 19
Member

My first name is Susan

I'll certainly look into the salt replacement - the cramping is getting real old real fast. The aldosterone was off the dexamethasone. Sounds like it would be good to check every so often while on steroids. Overall it seems prednisone or HC are better choices? My endo put me through most of the tests (except the metryapone - thank God) - because he's so careful before committing someone to lifelong steroids. All I can say is that I was all but unable to function and ready to apply for disability and now I feel like I may be able to enjoy some life again. W00t


07/09/2010 08:25 AM
ITeach91
ITeach91  
Posts: 1872
VIP Member

Susan,

You can learn to manage this and live a really natural life. "Reading" your symptoms and adjusting accordingly will become second nature. It freaked me out a bit at first that I was dependent on a pill to maintain my life - but it really isn't that hard. You do have to think ahead, remember to bring a "stash" with you wherever you go - wear a medical id bracelet, etc.

As for your question on cramping, Bob is totally right on that count. I defer to him because he's had experience with the dex.

I do fine on the prednisone, I find it more convenient for me because I teach and don't really have a lot of time during the day to think about dosing on time, etc. This way I can take it morning and night and for the most part I'm good during my workday unless I'm having an unusual stressor. Very rarely I need to take another half pill in the middle of the day - but probably no more than once a month at the most.

Deb


07/11/2010 07:55 PM
lorajoy
lorajoy  
Posts: 338
Member

Hi Susan,

Welcome to our group! You have been through a lot!!! I see that our 2 most knowledgeable members have responded quickly. They are awesome! I can't add much to what they have said. I am in a different situation than you. I have a child with PAI.

I do know that what Deb and Bob said is true...you have to learn to read your symptoms, read and listen to what your body is trying to tell you. My 10 year old is able to do that now. We have had a diagnosis for 4 years now. It has been a long road, but we have and are continuing to figure things out.

Again, welcome to our group! Please keep us updated on your situation!!


07/13/2010 06:45 AM
crz49
crz49  
Posts: 1141
Senior Member

Hi Susan!

A BELATED WELCOME!!!!

I'd like to give you a different way of viewing taking a steroid to have a decent life. In 1970, I had 90% of my thyroid removed due to Hashimoto's Thyroiditis. Since then I've taken a thyroid replacement; my body could no longer produce its own. I viewed it as, "Something that has to be to exist...no biggy".

When dx'd with SAI in January, and was told I had to take HC for the rest of my life, I thought, "ANOTHER hormone...no biggy". I don't see them as 'pills', just supplements to keep my body functioning correctly.

Just a couple of words to get you into a HAPPIER frame of mind......and yes, it IS overwhelming!

Post edited by: crz49, at: 07/13/2010 06:46 AM

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