Hello. New here

[bob3bob3]

Hi Linda

Kind of long...

Many years ago I did some self examination of personal ethics and "rules". One of those that rose to the top of the list was "It is never offensive to ask a question or communicate any idea or position". ie communication should be without judgment as it is only an exchange of brain waves! This sadly is not acceptable in many cultures, but it is a belief I hang onto regardless. In other words ask whatever you like. The worst that can happen is that I may not have a good answer!

The temperature stuff is actually quite easy. Take your body temp at 9AM, midday and 3PM, average them and record the figure. Do this for at least 4 weeks and graph the results. (Since HC dosing and exercise affects this I actually recorded my health status and stress dosage (if any) at the same time.) You then average the whole months averages. If it is more than (say) 0.5F below "normal" consider that you have hypothyroid. Then have a look at the day to day fluctuations. Ignore peaks that are obviously exercise related. If you vary by more than 0.5F consider that you are hypoadrenal...

Being on HC you WILL have wider fluctuations than a normal person and will also likely be average low. Its the nature of taking pills, peaks and troughs again! Rind's symptom list is especially interesting too. Important to keep in mind that his site is more oriented to those with minor system failures. Your and my data WILL look different. You will still be able to draw conclusions though.

Re thyroid not rising from the higher HC.. I guess I should have used the term "tends to" rather than implying "reaches the right level". There are no doubt other factors in your system that make it impossible for it to return to "normal". That you are on an "excessive" HC dose may even in fact be normal for your body given other conditions. You have to weigh the pros and cons. If the cortisol is being used up, you arent feeling angry/emotive, your bones arent weakening and your blood sugar level isnt hiking then who cares? Even being stressed about being stressed about being ill raises cortisol need! There is of course some inertia in the system but failing to reduce over a 6 week period implies you are already at the lowest need point.

The rest may be daunting and possibly even depressing. Just take a deep breath and read the rest at your own peril! It may however give you a feeling for how difficult an endos job is!

Bob

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The endocrine system is a huge balancing act. You have damage that for some reason or another says that the amount of "X" needed is lower than is actually needed for continuing life. "X" however also affects "Y". affects "A", "B" and "C" and so on. You may also have damage where the amount of "F" needed us higher than needed.. Can you see the complexity? You cant hope to mimic the operation of the pit etc with occasional pills. You'll always get out of spec output...

This is wiki's list of hormones etc of the endocrine system..
http://en.wikipedia.org/wiki/Endocrine_system
Lots! Look how central the pituitary and hypothalamus are.

Throughout the system there are a number of I guess you could say points of calibration. If you look at driving a car for example most people tend to look at the speed and traffic position to position their feet. When you go to a car with a standard or manual transmission there is a little more work to do in that you also take in engine speed via noise or the tacho. These would seem to be fundamental, but the brain behind the wheel could also try to monitor oil pressure, battery voltage (and thus adjust alternator excitation), brake pad temperature and so on. The pituitary/hypothalamus is an incredibly complex "brain" or if you like simple computer that looks at a host of conditions and issues instructions (hormones etc) accordingly. When you get pit area damage the calibration of what the body conditions "should be" is lost and since it is so complex it becomes very hard to control manually. A silly example would be to fit wheels to the car that are half the diameter. Your indicated speed would be high but everyone would still be going past you. Your brain would get confused over the tacho reading and gear shift position and get into a panic!

If you have a single dimension failure, lets say that only the ACTH producing section of the pit was removed and you then replaced the ACTH with the exact right amount nothing else would change. You can also almost do the same thing with cortisol.(ie HC) If you get that amount exactly right there would be no ACTH in the system and if the only place it was used is in cortisol production, everything would be fine. ACTH is however used elsewhere. (Its permissive for Aldosterone production) I am sure that it is also monitored/used in other systems as well.

Confused yet? What I am trying to get across is that a single failure is difficult to replace for and multiple failures even worse. It is a complex system You cant really find out with a high level of certainty what calibration points have changed in your pit. Even if you could, replacing what is missing is also a bit and miss affair since you arent doing nice flowing secretions from a gland but are popping pills. IMO you could replace a pit with a small computer. Even an IPOD would have excess capacity. You only need a fast measurement system and supply of injectible hormones...

Sorry kind of got off track a bit!
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[lindajoy]

Hi, Bob, Hi, Paul,

Thank you both for your responses. Bob, I have to say off the bat, I think an IPod for a pituitary would be awesome. Not only would my hormones be regulated so I would feel better, but I could listen to my favorite tunes at the same time.
Next time I got called to have a psych eval, though (have had many of those over the course of my illness--Linda, it's anxiety, Linda, it's depression), and they would ask, "Linda, do you hear voices in your head that no one else hears?" I'd have to say yes, then that may become a problem! Try explaining, "It's because I have an IPod in my head." "Sure, you do."

Ugh, HC dosages. I have three different doctors telling me three different "desired end results." My endo at CC wants me at 10 / 5 / 5 by the end of my wean. My pcp wants me at 20 / 10 / 5. My endo here wants me at 25 / 12 1/2 (which is not even close to what I do now, let alone will I change in the future to taking it only twice a day--just doesn't work for me--but he insists as "all of his Addison's patients take this dosage and it works for them, what's wrong with me?") Just different, I guess. I'm to the point that I have to go by how I feel, and I feel my best at 20 / 15 / 10, at least for now, until we get a grasp on what is causing all of this endocrine system gone awry stuff. Thank you, Paul, for sharing your HC history and experience. That's interesting that if you're late with your meds one day, you feel it the next. I tried telling my nurses while in-hospital this past week, how important it is to give my HC when it's due, but they have their own schedules and tried to fit me into them, even wanting to skip my morning dose ( ) because it arrived an hour late and just wait until my noon dose. I don't think they understood that I have no cortisol on my own and would be a mess by noon, if not worse!

Yes, I can understand how daunting it must be the be an endo. This affects that, that affects this, and on and on. And, there are so many hormones that they just don't know what all they even do yet! I can certainly understand how hard a job it is, and I do respect those endos who try, like my current endo at CC who was doing a thorough job with me until he got shouted down by another endo with more pull than him. I guess my problem with the endos I've see so far, and I think I've seen around 8 over the years, is that they tend to not listen, be textbook and so dismissive. I mean, I was dismissed as not having acromegaly because my teeth aren't space far enough apart! I was told I couldn't have Addison's because my skin wasn't dark enough (I'm secondary), so it was missed and I nearly died. It's things like that that I just have a hard time with. I just want to be heard and have things explained to me whereby they make sense, not just told to take a medication, go home and don't bother anyone anymore. I don't envy doctors. I'd hate to have me, the endocrine anomoly, as a patient. But, I am what I am, and I just want some semblance of a life back.

Thank you all for your information here. Oh, I started my temps today. Now, Bob, you said if I vary by .5, could by hypothyroid. From what I'm reading, with hypothyroid, that variance of lower body temp is pretty consistent through this testing, right? While the variance with adrenals is more erratic, going low and high by .5 the entire testing period, right?

Yes, you're right, it's daunting to be an endo. They have to look at ALL hormones together, their relationships, conditions they cause when out of balance, etc. I can't even figure out a temperature taking test without a hundred questions. I am gaining some respect for these medical people. Now, if they'd just learn some compassion, I'd feel even more generous about them!

Take care, everyone.

Linda

[bob3bob3]

Hi Linda

re the variance in temperature, yes right! Rind has some pretty sawtooth like graphs on his website that probably explain it better. If however you are generally or if you like averagely low you can be hypothyroid. Spikiness generally means not enough cortisol. Of course increasing your cortisol also brings up your thyroid! In my case I increased my cortisol and it kind of "fixed" both! Think in terms of the inter-relationship rather than separately.

0.5F is an arbritary number BTW. I was about 97.4 and most other AI people I speak to are that or below The body has a temperature cycle as well BTW. This is why you take three daytime readings and average.

Actually you'd have to wear the Ipod device elsewhere! Inside your head is way too invasive a place to implant and it doesnt need to be there really! You just measure blood levels and replace through the same medium!

JFI I was involved in ultrasound pulse Doppler back in the mid 1980's. I could hear weird noises from my heart valves and hepatic vein. Kind of like a whale reverse swallowing!
http://www.asum.com.au/open/history/con ... age12.html
http://www.asum.com.au/open/history/con ... age18.html
Amazing what one can find.. I remember this stuff!

I think doctors get sick of seeing sick people that arent sick! You have to engage them in a scientific manner and plan your sessions for best impact. I plan my visits like a military campaign! I prepare with notes of my own and even record the session.. I will often fax in advance "what I want to accomplish today" info.

Bob

[lindajoy]

Wow, and you have a doctor who is receptive to a fax stating what your meeting goals are? You are one fortunate endrocrine patient to have a doctor like that. I'm lucky to get the doctor to listen to what foods I can and cannot tolerate.

I'm disappointed about the Ipod thing. I thought it would be great to go around with a song in my head--better than this terrible, annoying high pitch squeal that I have most of the time, like my brain is being orbited by tiny insects.

I'll continue with the temperature test and let you know. I think it's good to know whether or not my thyroid is indeed low and in need of medication. Don't want to take anything uselessly.

Thanks, Bob.

Linda