Adrenal Issues and treatment problems

[Rita]

Before the creation of synthetic hormones, treatments were made with extracts of organs. Still good extracts are made with liver, spleen, hypothalamus. If you can not buy, you can go to eat animal extracts are in good condition, raised without antibiotics or dangerous products.
The famous and expensive Hepapresin, Kutapresin, Nexavar, is made of pig liver extracts.
Taking hormones can be dangerous because the amounts should be physiological, just the same as the body produces naturally, plus they are usually synthetic.

 

[Misfit Toy]

Silicon, I want to try chinese herbs again. Problem is, I can't find a good accupuncurist/herb doc in my area. There is the chinese woman who doesn't know how to speak English and says in her thick dialect....ACCUPUNCTURE cures everything. She says this to all of my ailments and then hands me a ton of pills in herbal form. None of which I know what they are. Then there is the woman in Philadelphia who charges an arm an a leg and doesn't understand why I am not getting better and becomes defensive. She doesn't understand my illness at all. But, I have been thinking of that route again.

I have the book adrenal fatigue. I have read it and I know what one is supposed to do. My problem is, I can't do it completely. I have CFS, Interstitial cystitis, etc. So, with all of these ailments, I can't seem to get better adrenals. If it's not one thing it's another. I supposed if I was truly cashed up, I could just rest and take care of myself and not work and get better. But, then I would have a sense of isolation which makes the situation worse. I live alone and have no support in this deal. My mom just told me yesterday...."stop talking about all you've lost and learn to live with it." I am livid. She always has to say something like this. I have learned to live with it. I take care of myself and work and take my trash out and do EVERYTHING myself.

I spend most of my time alone due to needing silence and rest. This is not easy to live with.

To Knackers, I am not sure. I came down with eBV years ago and that was it for me. I had a horrible flu like illness and that was the end of my "well" life. Then I stayed sick, was on all kinds of meds, developed endometriosis and everything else under the sun. Now my adrenals are shot.

I have all the symptoms. Exhaustion, no feelings of zest for life really, no sex drive ever, awful periods, can't wake up in the morning (although right now I am awake due to a bladder infection on top of everything else)

The hardest part of this illness to me, is the isolation. The fact that I have NO ONE to confide in and I have to ride out all of this stuff alone with no help. I know many of us do that. It's just so hard.

I called my doctor to tell him the miladregen didn't work for me but made we worse, and I get a nurse. No response from him. That's so frustrating as well.

These docs really don't have answers. They just hand out stuff and see if it works. For me, something makes me sicker or doesn't work at all.

The peptide shot is still helping me with foods, but it isn't helping me with other aspects of this illness. Like, the immune system. It's just lightening the load of food allergies to boot which I am really grateful for.

 

[alice1]

Spitfire I`m sorry you`ve been in this crash.I didn`t see it mentioned but I started with licorice root and would just keep it in my mouth all day.Did that for a few weeks then got licorice powder,added a 1/4 of a tsp to water each day and slowly worked up.
This may be something you could tolerate and the price is right.
Good Luck.

 

[Misfit Toy]

Thank you Alice. I have some licorice lozenges and will perhaps use them!

 

[moblet]

Before I try to say anything that might or might not be helpful: do you have a sense of whether your adrenal exhaustion is just one of the natural consequences of too much sympathetic nervous activity, if there is something specifically wrong within your adrenal glands, or if the glands themselves are perfectly healthy but are being overstimulated independently of sympathetic/parasympathetic activity? (The second of these cases is the only one that the medical profession is likely to recognise.)

 

[zoe.a.m.]

Hey Spitfire,
I might start with a food-source Vitamin C supplement. Mine was in the realm of $40 I think and is called Radiance C. It's essential that it's not a synthesized or treated supplement. I wish I had more brains in my brains right now and could tell you why C is so important--and this particular type--for adrenal issues, but I can tell you that it might be a good place to start, especially given your other intolerances. I also take Dr. Ron's Ultra-Pure Adrenal (which it seems might not work for you based on what you've posted so far; just letting you know what I'm doing in addition to the C) supplements. Acupuncture itself can be very useful in building back adrenal function, but it's a matter of the practitioner and style (I'd go for a Japanese style as it tends to be very gentle); anything that overwhelms or causes too much stress obviously defeats the purpose. I was trying to think of how you might find a good practitioner since I've been using Chinese herbs for years for adrenal stuff and I wonder if you can look at alumni from the best schools on the East Coast. I have relied on finding practitioners from the school I feel is the best in my region by looking at their lists of practitioners on their sites which give their location and contact info. Certain schools just require a lot more, and far more in terms of herbal training, and you want someone who really knows their stuff and won't just talk a good talk or railroad you entirely either. I suspect there are some very good adrenal homeopathic formulas that might be worth a try while you try to find a Chinese medical person or someone else. There is a company called Professional Complementary Health Formulas who make a broad range of combo formulas that are pretty well formulated imo. I'm pretty sure this would be something you would have to get through an ND, and it should be really.

Hope things improve; I know I'm counting the days until a positive change occurs; it's very challenging to be patient or just to get through each day when things are this acute, it really is...

 

[Misfit Toy]

Zoe A.M- I love that name by the way. So, it's funny you should mention this. I got in touch with a Japanese style acupuncturist. I had planned on seeing him when he recommended someone who is a classical herbalist. She can have a formula made up for me specifically. The old fashioned herbs that you boil which I like best. I know what she will say, that I have kidney deficiency or yin, I believe. I talked to her yesterday and will be seeing her on Friday. I have been taking vitamin C for years with no harm, but I have never really noticed a benefit. I will look into the Radiance C.

My doc wants me to go back on the mil adregen but I see no reason since it was making me even more fatigued and making me a mess emotionally. I am reading Adrenal Fatigue and I decided to take a step back from Facebook. I was on there regularly and becoming disgusted with peoples statuses and the fact that mine weren't exactly accurate. I was trying to portray someone who is happy only to feel even emptier for doing this. I have more time now for ME.

To moblet. I have no idea what is primary or secondary. I know I have been sick for 22 years, have really been through it. Had over 10 surgeries for endometriosis, for my back, my teeth, infections, hospitalizations, a constant bladder infection, Interstitial Cystitis and now perimenopause along with fibromyalgia that started in 2002. I think that would wear out anyones adrenal glands. Like I said in an earlier post, the perimenopause is what really through me over the edge. The lack in sex hormones made my adrenals CRASH. I seriously felt like I had a light go out when my periods started becoming insane. My DHEA is low and also my vitamin D.

 

[antherder]

A friend of mine had adrenal exhaustion and was too high in copper. You might test for that, too.

Spitfire,

I think this is really worth looking into, if you haven't already. Copper is known to cause all sorts of trouble, like PMT, depression, fatigue. I've read that the adrenals send the signal to the liver to make ceruloplasmin. This is the protein that makes copper available to the body. If you don't make enough ceruloplasmin, then toxic unbound copper can accumulate and do all sorts of damage. I've just found out that I have too much unbound copper. Not sure why yet.

The tests you need to check your copper status are;

ceruloplasmin (NB: this is falsely elevated by infection/inflammation, eostrogen therapy)
serum copper
24hr urinary copper

Apologies if you've already been there, done that. Don't know how accurate this is, but it's interesting.

http://curezone.com/forums/fm.asp?i=1346183

 

[jeffrez]

I think whole glandulars like Mil Adregen typically have adrenaline in them and are probably counterproductive in most cases. In your situation, I would get a salivary cortisol panel, and start taking licorice root extract and perhaps adrenal cortex extract.

It could take many grams per day of licorice - a lozenge is probably not going to do it, especially if the lozenge is deglycyrrhizinated. Some precaution and care is needed to make sure you don't get hypertensive on the licorice, but with proper dosing and maintaining awareness by checking your BP regularly, watching for water retention, etc. the risk of that is reduced. I believe licorice also has some at least mild to perhaps moderate antiviral properties. So if viral issues are a problem, it might help a little in that respect, also. If your vitamin D is low, it's a good idea to supplement with enough to get you back into range.

hope you start feeling better

 

[Misfit Toy]

Thanks Mr. Kite.

When I go for acupuncture and herbs, I will ask for licorice to be put in the compounded brew. ACE makes me worse. It puts me in bed full time. All adrenal meds do. When my adrenals were better...I could handle them. Now, I can't.

Antherder. I have never looked into copper. But, if I do have high copper, what do you do for that? I really don't know how much more detoxing I can do. It makes me so sick.

 

[Sing]

Dear Spitfire,

I really sympathize with your feelings and your position. I am much the same way now. This winter since I had to move in December has been too much. I feel beaten down and am too isolated as well. My endocrine levels are scraping bottom, but, I can take hormones. I need to have them raised. Appropriate testing is always a struggle as a key driver is not "exhausted glands" but the top of the system in the brain, the hypothalamus and pituitary, the HPA. I don't think the hypothalamus can be treated, nor the pituitary in most of its functions. So the drivers of these problems, and whatever is behind the problems with the HPA, as in retroviral involvement, isn't being addressed yet.

Are you able to take other medications for sleep and pain? I have found a low dose of Clonazepam helpful, also Gabapentin and Tylenol. Dealing with pain issues and sleep are really important, for me anyway. Trying to regain a more balanced state.

Then there is the computer and the other electronics, the cell phone, the TV--these all tire me out and unbalance my brain--they are like temporary toxins. Limiting these really helps clear things up. Going outside and getting fresh air, looking around and taking a little walk--this helps me.

Speaking to people who can help with perspective, and also humor would be helpful in this situation.

Thank you so much for sharing the desperate edge of how you have been feeling, because I see my own reflection in it, and I care about you!

Sing

 

[moblet]

Had over 10 surgeries for endometriosis, for my back, my teeth, infections, hospitalizations, a constant bladder infection, Interstitial Cystitis and now perimenopause along with fibromyalgia that started in 2002. I think that would wear out anyones adrenal glands.

The reason I asked this question was because the mechanism that connects trauma to wrung-out adrenals is not direct, it occurs via the sympathetic nervous system. A strong sympathetic response can be triggered and sustained by pain, infection, surgery or other injury, psychological stress, etc, and one of the many things that the sympathetic nervous system does is stimulate the adrenal glands. It's clear to me, and to a lot of other people, that this mechanism - part of the autonomic nervous system - cripples, or contributes to the crippling of, some percentage of the CFS/fibro population, myself included. But here's the kicker. The sympathetic nervous system is so fundamental to human and animal physiology that it's taught to first year biology students, but the medical profession considers it irrelevant. Doctors can't see it, and medical interventions are never evaluated for their impact on it, while most complementary/alternative modalities recognise its importance and can diagnose and treat it to varying extents in different people, using a wide variety of techniques and substances. If you are finding that medications cause you more distress than they ease, it's possible that they are winding up your sympathetic nervous system, and this is why you feel worse. So what I'm really asking you is whether you reckon this mechanism is out of control in your body, or, if you have no idea, if you can research it and try to become aware of where your body is on the sympathetic/parasympathetic scale at any given moment. I could rattle off numerous things you could try but I don't have the energy to take a scattergun approach and I doubt you have either, plus when one's body is a complete mess, as mine was, it can be difficult to tell what's working and what isn't. Hence my trying to get into more detail.

I will, however, loudly second zoe's recommendation of Japanese acupuncture over Chinese. It's still Chinese traditional medicine, but done with more sensitivity and skill. My acupuncturist does the Toyohari style. The only herb formula he's ever given me is Rehmannia Six for adrenal (they call it kidney) weakness, but I only use it rarely, on occasions when I know it'll help me without throwing my system off balance. I wouldn't recommend you going and trying it just because it was prescribed for someone else, though. Your traditional Chinese dx will be very different to mine.

 

[heapsreal]

with respect for your vit d levels, i found the high dose 50000iu caps from prohealth good at getting vit d levels up. I was taking 5000iu a day for a few months and still tested low, then i changed to the prohealth 50000iu caps and took 2caps and few days apart the first week then i cap every week for 4 weeks now i just take one a month or when i remember and my vit d levels have remained nice and high.

cheers!!!

 

[Misfit Toy]

I was on Solgar Vitamin D. I am sure this is a huge component. I stopped taking it because I just sort of got lazy and was becoming sicker.

I know there is sympathetic and parasympathetic problems with my adrenal gland. I went to Dr. Poesnecker years ago, who told me that. All I know is, I am so tired and so sick, that things are becoming more and more out of focus for me. A month ago I was better and 2 months ago, I was better.

I sort of did this to myself by overworking and taking advantage of the fact that my jewelry sells at Christmas and for 4 months before. I make the most amount of money at this time, so I went with it and now I am paying for it. I need to come up with an alternative plan for next year.

 

[knackers323]

i am very for your position spitfire. i feel exactly the same way. it is a deep hole that you just cant seem to get out of. is adrenal fatigue really that hard to heal or is it that we have something else that is preventing them from healing. or is it that we dont have adrenal fatigue at all but something else entirely that is causing our symptoms? some docs tell me i have adrenal fatigue others tell me there is no such thing? if af is real does anyone know if growth hormone is good for treating it?

 

[soxfan]

I am in the same position. I was on cortef for 4 years before the doctor decided to get me off which took an entire year. I am much worse off now since coming off the cortef and I am not sure it is because my adrenals were supressed and aren't able to work properly or what. I have steadily gone downhill since December when I took my last dose.

Doctor decided to put me on Isocort but it makes me feel very wired inside and just very strange...I had taken it for a week and stopped. I too am so exhausted and just can't recover at all from a trip to the store. Now I am wondering if I need to go back on cortef because I at least could somewhat function. I don't see how anyone's adrenals can recover when we have a chronic illness going on....

Just had my saliva panel done and the cortisol is flatlined throughout the day except the 10pm..I don't know what to do either.
I am seeing Dr. Komaroff in 2 weeks and hopefully he has some ideas on this...I will let you know what he has to say and maybe it can help you out too.

 

[Sing]

Hi Soxfan,

I've been on Cortef for 12 years and it gave me some life back. This is a low dose of it, 5 mg twice a day. I went off for two months and my tests showed that it had not suppressed my adrenal function. Suppression is only supposed to happen when the dosages reach the physiological dose of 30-40 mg per day or higher.

Secondly, I am tired of hearing the idea of adrenal fatigue. This isn't about exhausted adrenals--doesn't need to be. It is about a malfunctioning HPA axis which starts in the brain. The hypothalamus in the brain, which is the director of the endocrine system, the top dog, is not signalling appropriately when the hormones are needed. There is something faulty in the signalling or feedback loop creating a weak and a delayed response. There may be nothing wrong with the glands; they just aren't getting timely or appropriate orders.

Supplementing the kind of cortisol the body needs and uses, which Cortef is--not a precursor, not a time released weak form like the generic hydrocortisone, not a glandular--is appropriate to provide the body what it needs to balance its functions.

Read Safe Uses of Cortisol by Dr. William McK. Jefferies

 

[heapsreal]

Hi sing, i get where your coming from with adrenal fatigue as in its not the glands but the signals from the hypothalamus, its might be bad terminology, but then it doesnt explain how some have used hydrocort for a short period to 'rest' the adrenals and have improved and maintained this improvement after HC has been stopped. Im not sure if the whole adrenal thing is that black and white. Maybe there are a few different things going on with adrenal hormones, signalling etc, i know my adrenal hormones have been slowly declining over the years since i have had cfs. I dont really know if the adrenals are fatiguing or its just my hypothalamus is becoming more dysfunctional and i dont know how to test for this either. The term adrenal fatigue i use for low adrenal hormones cortisol/dhea, like i mentioned before, i dont know exactly where the problem is coming from.

You seem to be well read in the subject, can you tell us more on your thoughts and opinions on HPA dysfunction and adrenals. I think this would be an interesting subject.

cheers!!!

 

[heapsreal]

causes of adrenal insufficiency:
Causes of acute adrenal insufficiency are mainly Waterhouse-Friderichsen syndrome, sudden withdrawal of long-term corticosteroid therapy and stress in patients with underlying chronic adrenal insufficiency.[10] The latter is termed critical illness–related corticosteroid insufficiency.

For chronic adrenal insufficiency, the major contributors are autoimmune adrenalitis, tuberculosis, AIDS and metastatic disease.[10] Minor causes of chronic adrenal insufficiency are systemic amyloidosis, fungal infections, hemochromatosis and sarcoidosis.[10]

Autoimmune adrenalitis may be part of Type 2 autoimmune polyglandular syndrome, which can include type 1 diabetes), hyperthyroidism, autoimmune thyroid disease (also known as autoimmune thyroiditis, Hashimoto's thyroiditis and Hashimoto's disease).[11] Hypogonadism and pernicious anemia may also present with this syndrome.

Adrenoleukodystrophy can also cause adrenal insufficiency.[12]

Adrenal Insufficiancy can also be caused is when a patient has a Craniopharyngioma which is a benign tumor that can damage the Pituitary gland causing the Adrenal Glands not to function. This would be an example of Secondary Adrenal Insufficiancy Syndrome.

I just copied this from Wiki, it seems that infectious causes of adrenal problems happens, HIV is mentioned so theres a good possibility that XMRV could cause similar problems. So adrenal insufficiency is probably a better term them adrenal fatigue. So it seems to have name problems like cfs, cfids, me, etc

 

[soxfan]

Sing- I would still be on cortef if the endo hadn't wanted me off..I was actually doing well on only 5mg daily. They did the ACTH Stim test and my adrenals responded to the test so when provoked they can produce. They also did the plasma ACTH test and that was really good too. But I agree that our adrenals are not producing when we need them too. The signal is screwed up.. That is definately in my case because under stress I immediately can feel the life draining from my body.

The doctor I am seeing now totally disagrees with the endo and that it is not black and white. You can have adrenal exhaustion to different degrees . He compares it to the thyroid...some people have to take more medication than others to keep it going. So I guess I will have to see what happens next week at my other appt. For now I will stay on the Isocort because I have no choice.

I do believe it was the cortef that helped me function all these years and now that I don't take it then I am going backwards. I was only on 15mg so I don't believe my adrenals were suppressed but I definately had withdrawl symptoms...I did have the book about safe use of cortef.
The problem is most doctors esp. endocrinologist don't believe in saliva testing either..