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02/15/2011 08:53 PM

So glad I found you! - many questions...

Leigha
Leigha  
Posts: 196
Member

Hello. I'm in 2 other MDJ groups and didn't know this group existed. Can't tell you how thankful I am to have found you. My profile lists many serious problems I deal with, 3 which are totally unrelated. You won't even find adrenal insufficiency there - because there is just so much I could have listed, not because it isn't a huge problem for me. It is and has been, for years. Finally my doctor is treating me, but from symptoms and not any testing. Having begged doctors for tests has become a joke. Perhaps because of all my other problems and cross-symptoms - I don't know. But what I do know is that I've suspected adrenal insufficiency for about 12 years, even had my elbows and 'joint' areas turn dark brown for awhile, did the eye pupil test.... plus almost 100% of the symptoms. Started at 5mg of hydrocortisone and finally, last year, we upped it to 25mg.

I can say it has made a huge difference. I still deal with serious chronic fatigue, but there is a difference between cf and adrenal fatigue. It's the difference of being a car without gas or without the spark plugs working.... both serious but different, if you know what I mean. And, forgive me, but I must say this. For 12 years I had absolutely no sexual feelings. I'm not young, but I'm not old either. They were just gone. Now I feel like a woman again, at least am reminded of that aspect of human life. All these years it's just been brushed off.

Ok, specific questions..... I still crave salt. Put it on everything. Maybe not quite as much as before but I do want it. My bp is in the normal/high range. Next question: If I could talk my Internist (who is treating me) into giving me the ACTH stimulation test, will it read ok with my being on cortisone pills? She has refused. Can't find an endro to treat me. Because of the severity and complexity of my different medical challenges, most doctors really don't want to deal with me - a fact I've had to deal with in my 20 years of illness. Last question: When is florinef prescribed? In my internet searches I thought it was only for Addisons, but in reading here (and I've done quite a bit of searching around - this sounds like a great group!) florinef seems to be used for insufficiency also??

Thank you so much, any of you who might answer. Oh, I am hypothyroid and take medication. We keep playing with the doses as it doesn't seem real stable. My Dhea is low, as is my Vit. D. My growth hormone is in the normal range.

All the best,

Leigha

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02/16/2011 10:38 AM
Waytoohandsome
Posts: 474
Member

Leigha,

Even if they don't want to be casual prescribing stuff, with your symptoms they could do a simple blood test for aldosterone. That's the adrenal hormone that regulates salt and water ratio.

Addison's causes loss of aldosterone, leading to salt cravings.

That'd be a start at least.

I find it beyond annoying to have to beg for testing ....


02/16/2011 11:31 AM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hi Leigha.

Some info.. "Addisons" seems to have variable definitions as to what exactly is going on. We tend to use the terms Primary (broken adrenal glands), Secondary (broken pituitary) or Tertiary (broken hypothalamus) Adrenal Insufficiency. Treatment is similar but bears knowing the differences.

Okay so you have a semi contradiction, in range BP but out of range salt! I dont know if cravings are always that reliable so have a look at some other information to support the need for a water percentage increase. Like do you get super sore legs, dry throat, flat veins, postural hypotension etc. I never crave salt as such, just notice the dehydration symptoms and act. The other half of BP regulation is of course cortisol itself! (vasodilation etc - which is more the postural hypotension thing) Perhaps your "in range" BP isnt high enough?

Yes you can draw information from a ACTH Stim/Cortisol test whilst on Hydrocortisone/Cortisone. In some cases it has to be factored in and may limit the full spectrum of what can be gleaned from it. If however you had the test in the AM before any HC etc pills for the day you could be fairly certain of proving primary if it existed. You have to ask why though. You say you have major relief going on the steroids so what are trying to prove?

In super simplistic terms the adrenal glands produce cortisol, aldosterone and androgens (like DHEA and Testosterone) You have more or less described symptoms that indicate primary adrenal insufficiency. The cortisol you have "fixed", the lack of aldosterone (if any) is indicated by the salt cravings & lowish blood volume/BP and is what florinef (and more salt) is given for. DHEA is very much a girl feel good steroid as it is the sex hormone substrate material. It may be worth looking at supplementing that. Just be careful though because there are some not so good OTC preps around. (Its available OTC in the US but is a controlled androgen in many other countries)

Use of florinef in secondary/tertiary case is rare but not impossible. Although aldosterone is stimulated by ACTH its more of a permissive thing and is regulated by blood potassium levels. You can of course suppress ACTH output by using something like Dexamethasone for your cortisol replacement steroid. I went through that stage but managed to use salt for water regulation rather than florinef.

Other thoughts? Look at your dosage patterns of HC. Make sure you are using the 3/day diurnal pattern. It may also be worthwhile doing some body temperature testing. That can show thyroid and adrenal state. Are you antsy/irritated a lot? Progesterone/Estrogen patches may help that or just with DHEA. Oh dont try to over control thyroid dosing changes. (T4 or T3?) It takes about 6-8 weeks to settle/balance, whereas cortisol is a lot faster. (like a few days)

Hope this all helps

Bob (in Oz)


02/16/2011 01:26 PM
Leigha
Leigha  
Posts: 196
Member

Thank you both - so much. I see my internist next Tuesday so now will have more information to discuss with her. Several times she has wanted me to decrease my hc (we raised it to 25mg last summer), but finally seems convinced I need it - although she keeps warning me that my immunity is now very compromised. I do deal with low immunity, but dealing with no energy is where that balance beam comes in.

1. Am asking for the aldosterone test. Bob, had read your profile before, as saw so many posts from you - so very glad you responded. I've always been a water drinker, but what you describe seems much more. It may be that I try the salted water - but that's down the road. My bp is normally about 130/80 and the answer to your questions is all no: "do you get super sore legs, dry throat, flat veins, postural hypotension etc." My fatigue is still very bad.... but I am able to get up and do what is necessary,

which is huge.

Good comment about taking the stimulation test. Also interesting about your thoughts on primary - I've often wondered if I might be.

I had read with interest the way you time your hc. I dose 3x, but not as late as you do - take 10 mg when get up, 10 mg 4 hours later and the remaining 5 mg about 4pm. Now have been fighting an infection so take an additional 5 mg with the first morning dose. This is all from my own research on-line. Can't feel any immediate difference, just that if I don't take it know I can't move. Period.

I do take prescription T3, along with other thyroid and also prescription, but very low dose, DHEA and natural (prescription) hormones. Have been, but it was the additional hc which made such a difference for me, although my DHEA still tests low and perhaps she would raise that also.

You've given me much to present to her, and to think about. It is absolutely great to finally have someone to discuss this with - and not just a doctor who (thankfully) gives me the hc but with dire warnings!

All the best,

Leigha


02/16/2011 02:09 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Whats your height and weight Leigha? Its worth checking your replacement dose calcs..

And if you adrenal damage is autoimmune you'll need far more HC. Have you seen a rhuemy?

Infection usually means dose tripling. You need that extra cortisol to make your immune system react as well.

BG, weight gain and Osteoporosis (DXA scan) are a good indicator of excess HC usage. I can actually see my BP undulate with my HC dosing as well.

Bob


02/17/2011 07:26 AM
Leigha
Leigha  
Posts: 196
Member

Hi Bob,

I'm 5'3" and 160 - a good 30 lbs overweight, thanks to anti-seizure drugs needed. How do I check my replacement dose calcs.?

Also, I do deal with autoimmune issues, so this could possibly be the case. Have seen a rhuemy but any idea of adrenal issues was brushed off. Again, probably due to the fact that I deal with so many other issues.

Will increase my hc.... double it today and see if that makes a difference, don't know as I should immediately triple it... ?, the infection is a bit better but my energy is about 2 on a 1 to 10.

Don't know what you mean by 'BG'? Do have the precursor to osteoporosis, but then I'm not a spring chicken either (I'm over 50, even tho' pic is rather recent).... and after 20 years of not being very active, that doesn't help either.

What is interesting is how easily you see/feel your body react to the hc. I don't, but as said without it feel absolutely dead. I wonder if my lack of feeling immediate reaction is all the other pills I take and issues I have. hmmm.

Again, thank you so much for your feedback, Bob. This is helping me.

Take Care,

Leigha


02/17/2011 11:46 AM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hi Leigha

My webspace (see my profile words) has some article on various AI issues. The dosage info comes from two of those papers (Weight Adjusted dosing... & Association of 24Hr...)

Okay you are at the top end of "overweight". The reason I mention this is that one of the papers above says "there is a 50% higher cortisol clearance rate with obesity". In other words you have to dose more for the body stress associated with that, adding a percentage to the weight/dose table. This is what made me jump from 27.5 to 45mg a few years ago when Dex use pushed my weight high. For you on the edge I'd suggest you start thinking 40% and adjust for symptoms.

At 160lb (73kg) though your dose would be 17.5mg at 10/5/2.5. With the modification above that does in fact make it 25mg. I do however stand by my "dose for symptoms". Autoimmune issues can create the need for a double or triple of dosing and your body system have dynamic needs for cortisol. Even emotional stress is a system demand. Feeling depressed about feeling sick can make you sicker...

When you double, dont take it concurrent with your present dosing. You can saturate the body's blood cortisol carrying capacity (your kidneys remove the excess). Its best to stagger the stress doses out an hour or so. I actually tune my stress dosing sometimes, like take the HC and watch for reactions. Rocketing high BP and BG are indicators that I have taken too much. IMO we should try stress dosing as an experiment just to get a handle of body reactions. Emotional stress in a non AI person can double or triple for short time naturally so it isnt as if it is dangerous in small amounts.

Well the rheumy should have run an automimmune screen. You arent looking so much for an automimmune adrenal gland problem, but a system demand for cortisol. I know an excellent rhuemy in East Texas who would do that just based on what I said. If you are near there and are interested I'll send you his details.

BG is blood glucose. HC is a catabalic steroid, it raises BG. Too much can cause insulin resistance of course (ie the start of diabetes worry..) This is more or less the reason why you get weight gain on steroid use and is the big plus of splitting your dosing to 3/day.

Oh I really notice my cortisol levels! In fact I am one of the happy ones that get euphoric after taking the pill! Its best to buffer HC with food of course to slow the uptake.

See if the stress dosing helps your "dead" mood as well. You should always aim for good quality of life. The next doctor visit should include "tell me what symptoms are noticed and a problem from too high steroid use?"

I am not going to comment in the spring chicken age thing! <grin>

Bob


02/18/2011 12:00 PM
Leigha
Leigha  
Posts: 196
Member

G'Day Bob,

It's a good thing you're half way around the world, telling a gal she's almost obese. Smile.... for someone who has always been tiny having a BMI of 28 is maddening. The 2 articles were helpful. Am seeing how I mis-dose with food. Quite a library you have there, most impressive.

Your point on dosing for symptoms makes sense, those of us who deal with illness have more stress - perhaps. For me, this is my road.... do all possible to enjoy what is in front of me! Lack of energy makes it difficult, certainly!

Today I have noticed a distinct difference in energy, still double dosing and not with food and spacing, as you suggest. I so appreciate your time and effort with all this, Bob, even if you are deadset about my weight. Teasing...

Getting euphoric hasn't happened yet, that would be nice. Just having energy is super. It's summer for you, I'm looking forward to it here in Michigan. Used to live in Hawaii, also in a small town and as far from the tourists as possible. See you are about 100 miles from the ocean, do you ever go there? Always wanted to dive there, am a certified diver and that was a goal, have traveled much of the world - but not to your corner. But I digress....

Am confused by one item mentioned. You buffer your intake with food, yet the recommendation is on empty stomach. Is this because you have such a direct effect? I am feeling it more on empty stomach, so am guessing it is finding what is best for each individual?....?

Had a 25 lb. weight gain in past 3 years due to neurontin and lyrica, am off both now but the weight goes on easier than comes off, isn't that unfair.... still on many drugs. With more energy hope to resume physical activity.

Oh, have to comment.... your cat photos are great. A lifetime ago I worked in photography, a hobby now.

Again, thanks so much..... your help is very appreciated, Bob.

Leigha


02/18/2011 02:16 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hi Leigha

Well we have to be honest with each other here! I mean we can all laugh at such things as well since it is basically out of our control. You may encounter those in general society that view your weight as a failure on your part, but we all know differently!

I got a bigger BMI than you, Na-nana! (35) Do I win a prize?

I havent been out to the coast for a while. I dont have a car so its a bus trip that since it isnt so well patronized is kind of expensive. Its also kind of over-touristy. I'd prefer the higher mountain and waterfall areas.

Actually the buffering isnt quite contradictory. What happens is that your first HC dose of the day has to rise quickly in blood (to mimic the normal curve) so you want less food effect. I have found personally that dosing about 10 mins before food gives best results for me. The next two doses you want to do the exact reverse, which is why you dose after food for those two.

They are the cat/kitten that got left in Texas... I now take movies and post them on FB. I mount the camera on the front of the bicycle and allow people to armchair ride around with me!

Bob


02/18/2011 03:00 PM
Leigha
Leigha  
Posts: 196
Member

Hello Bob,

So when my cortisol is lowest I want to give it the biggest amount. Am starting to 'get it'.... (a little slow on the uptake after all those tia/small strokes, am lucky there wasn't more damage). Feel a bit 'edgy' today, so that tells me I probably overdosed, yet this is how I learn. And I have to learn, not the doctor telling me what she thinks. Am going to start with a pill by my bedside, as don't bounce out of bed like I used to.... grin.

Yup, you win the prize. Yet think you've got the stature for it.... another grin. Those of us 'petite' ones don't have much room to hide anything.... but then, with all I've been through, there are much more important things in life. And that is the truth! Do so understand what you mean about avoiding the tourist areas; used to love to hike to isolated beaches on the Big Island.... but also to waterfalls. Did have a car but affording gas was always a problem!

Am feeling better finally so tomorrow will dose first am with 10mg (no food), 4 hrs. later 10mg (no food) and the remaining 5 mg by 6pm (no food). I take meds 9 times a day (don't choke! - or laugh too hard) so it's really hard to fit in. Thought I was a Ph.D. in pill mgt. until this cortisone issue came up - but then I deal with other issues that, well, keep me out of trouble. Want to try w/o food first as it doesn't seem to hit me quite as it does you. THANKS!!!

Am going to google your area, as a travel enthusiast am intrigued by the waterfalls and just the area....

Bob, you've been absolutely terrific with your help.... Now to see how my doc responds to the test I want next week, will be firm. - aldosterone.

Take care, have fun on your bike....

Leigha

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