Adrenals, among other things

[Karen]

In a nutshell, in the past few years, it's been discovered that I have low cortisol, low thyroid hormones, and low sex hormones. Pretty much every endocrine level was low. I've tried just about every supplement and medication to supplement and/or address all three. After over a year of trying, I finally feel like my thyroid is well managed (Cytomel is the only med I could tolerate). After my thyroid levels kicked in, it seems my sex hormones seem to be more evened out even though I haven't had them re-tested in a while. My cycles were extremely irregular before and now they're pretty consistent (even had a 14 day luteal phase) so I'm quite confident about that.

But, my adrenals still suck.

I've been GF/DF for a few years now, ate very little processed food prior to my first Whole30 (I'm on day 23), get enough rest, try to minimize stress, etc. I'm following the circadian T3 method to try to better support my adrenals and am continuing to tweak it, but haven't seen any significant changes. My energy levels came back a little bit when finding the right thyroid hormone/dose, but my cortisol levels STILL suck. I'm dragging. I'm exercise intolerant. Being out in the heat for 10 minutes completely depletes me. I get a case of the zombies when I run out of energy. I want my life back. What else can I do, diet-wise or otherwise, to get them to kick in and start making enough cortisol for me to have my previous energy levels back? I know adrenals take a while to heal, but I'm going on almost 4 years despite doing everything I know how and it's getting really old.

*Edited to add: Yes, I've seen a doctor about this. I have an awesome doctor - one foot in traditional medicine and one foot in non-traditional, but even she's pretty much out of ideas.

[missmary]

oh honey, I hear you! every body is so different (and I don't have my own body figured out quite yet) so I'm hesitant to offer much advice...I do know dropping coffee/caffeine can help, and there are some supplements that might help (Adreset by metagenics is one), and making sure you are good on minerals like calcium, magnesium (I use Natural Calm cal/mag). even sea salt added to meals can help.

And let yourself rest. I know how hard it can be to just take a nap in the middle of the day or go to bed at 8pm, but I had to do that for a while...I still sleep a ton, come to think of it, but I have energy to exercise now and that makes a world of difference for me. hang in there!

[Emily]

I know that you are familiar with STTM... is your doctor open to a low dose of cortisol as is discussed there? I did that for a year, mimicking the bodies pattern as close as I could (three times day, most in the am) and it made a huge difference. That was the year I finally got energy back. After a year I tapered off and have been able to hold on to my energy!

[Karen]

Well, at least I'm not alone! I'm glad to see others have had some success, but feel like I have tried it all. I gave up caffeine almost 3 years ago. I've tried just about every adrenal supplement out there - both supplements I tried on my own or through my doctor or acupuncturist. At one point, at the recommendation of my doctor & a lab that did a full steroid hormone cascade panel , I was taking a gazillion vitamins and minerals at no avail (when they called my doc with the results, they said I must feel awful based on the results they had!). I was taking 60+ pills a day (which I know is too much, but I was desperate and under my doctor's care). And, yes, I take magnesium (can't do Nature Calm as it has citric acid, which I'm sensitive to). I also take B complex, C, A, D, chromium, selenium, zinc, and a few digestive enzymes.

I even tried HC. Twice. I REALLY wanted it to work. I don't tend to tolerate medications well and despite trying both cortef and a compounded formula at multiple different doses split throughout multiple times in the day, I was a complete wreck on it and couldn't tolerate the side effects. Isocort didn't work, either (plus it has lactose, which I can't tolerate). And neither did the other adrenal glandulars or supporting herbs. I tried drinking salt water but it got me so bloated and gave me an instant headache so I stopped. I salt my food generously without consequence, though.

See what I mean? Tried everything! I've stumped no less than 4 non-traditional practitioners and at least 3 doctors just regarding my energy alone. I've seen over 23 doctors/alternative practitioners over the past 4 years for this and other health issues, though some were just one-time appointments as I found out they just wanted to feed me a pill.

There just HAS to be something nutritionally missing. The only thing I keep coming back to is that I crave protein all the time. I can (and have) eat an entire meal of just meat. That makes me think I'm not digesting stuff properly. But I don't know how that necessarily affects the adrenals.

[Emily]

I'm sorry to hear that HC didn't work for you. It sounds SO frustrating! I know that I was super frustrated when I was working on my health. Plus, I know it stinks to feel bad and be trying to find good docs... having to explain it all, having to sort the good for the bad.

I don't have any more ideas... but I do know that you are your best advocate. Hang in there and keep reading, asking, and trying new things. Obviously you are doing that--just keep on.

Craving protein is an interesting symptom. I know that when I crave carbs I'm usually actually needing protein. I don't know what craving protein can mean (other than wanting protein) but it sounds like a good pathway to investigate.

Good luck. I know it's really hard not feeling well and not being able to at least get an accurate diagnosis. Hang in there and keep on!

[Renee Lee]

Hey Karen,

Have you tried mediation/yoga/other stress management stuff? Have you changed your lifestyle at all to accommodate your adrenal stuff? I fall into this trap ALL the time, but you may be looking for a nutritional answer to a lifestyle problem. (Dallas keeps reminding me of this)

Check out the whole9 website for the OTHER 8 aspects of the health equation. If you've been on the whole30/paleo path for a longish time, it is very unlikely that there's a nutritional silver bullet out there for you.

The other thing could be that you just need to give it more time. All your other hormones have come back, but adrenals are finicky, and may just need more time to rebound. I really would look into your lifestyle stressors and see whether that could be a contributor

[Karen]

That's a good perspective - sometimes I forget that food doesn't fix everything. I will admit that a few years ago, stress was a huge factor in my health and well-being. 2008-2009 sucked. Failed relationship w/a coworker the same week our company started to downsize, developed severe chronic pain shortly after that which led to surgery, endometriosis, drugs, etc., and was finally laid off after a year of wondering when my time was up, all within the span of about 14 months. I was a knot of stress. I'm convinced the stress I was under was directly tied to the timing of my health issues. But emotional-stress wise, the past 2 years or so have been much better.

My job can be stressful at times but for short durations. I make an effort to keep my hours down to about 45 a week, which is the lowest I can go without getting nasty looks (I used to be at 50-55/week). I honestly think my biggest cause of stress right now is my health. The only times I feel like I'm under stress is when I'm either over-exerted (sometimes by even the littlest things) or trying a new treatment. Things finally seem to be settling in and I've sworn off any new changes in treatment for a while as a result. I took a peek at the other 8 factors and the only ones lacking are exercise and fun/play, which is directly tied to the energy levels. I still make time for fun/play, but try to do low-key things. Regardless, I almost always pay for it the next day or two.

I still think my adrenal issues are at least partly tied to food. I have some pretty odd (and new) food sensitivities & reactions, which make me think there's a lot of damage going on inside. I realize the Whole30 style of eating will help with my innards, but are there any additional nutrients in foods that the adrenals could use to help them along?

[KimSilverton]

Hey! Sounds like me 15yrs ago - diagnosed with adrenal insufficiency (Addison's), hypothyroid (Hashimoto's), and premature ovarian failure (menopause) in my early 20s - all autoimmune. I also suffered from IBS since teens, and had Lyme Disease.

I felt like crap until I started taking fludrocortisone (mainstream rx med for adrenals). Before that I couldn't get my electrolytes in balance with salt and other nutritional sources. Now the only time I have those low BP/hot/cold/foggy headed episodes is when I forget to take my meds.

Good news is that I've been mostly healthy since then and have accepted taking daily meds. Now if I can just get through this Whole30 (day 7).

[Helene2310]

Karen I am sorry for your struggles! I too know what adrenal fatigue feels like. I have been to many different doctors and tried all kinds of supplements. The HC DID NOT go over well with my body I loved the energy but I felt like I was on drugs.

Like Renee mentioned, I have had to take up yoga and mediation to try to calm my type A personality. It difficult at first but mediation (especially if you're type A like me) can sometimes be very helpful.

I'm not sure if you have read "adrenal fatigue, the 21st century" by James Wilson, but if you haven't I would suggest reading it. One of the monst interesting things to me was how the time you go to bed can be so important in your healing process! Also, have you ever had mono or been tested for Epstein Barr? I showed positive for EBV which was making me chronically tired and the doctors have been able to slowly address te virus in hopes to help my energy levels.

Keep you your hard work, it will pay off in the end!

[Helene2310]

@buckdono... Is the fludrocortisone similar to hydrocortisone? I would be interest to ask my doctor about it however my body did not handle hydrocortisone well at all.

Thanks!

[KimSilverton]

Fludrocortisone is a mineral-corticoid. It is produced by the adrenals in addition to cortisol. I'm pretty sure I was tested for EBV in '99ish. Luckily, not part of my mix of probs.

I also take hydrocortisone. It took me a few months to get used to it, but my cortisol levels without it are near zero - my adrenal glands are truly shot. Over a decade of taking these meds and I haven't had any symptoms of high cortisol - it just took a long time to feel good again after initial diagnosis. In fact, my free cortisol levels are still low, but I generally feel great. I do take extra HC when I get sick. If I have to have a med procedure (colonoscopy) or if I were to get in an accident, I would need injectible or IV steroids. Have had 2 minor surgeries since diagnosis, and had IV steroids in both cases. Otherwise my blood pressure would drop and I would go into shock.

I wonder if I had been eating the Whole30 way back in the '90s if I could have 'revived' my adrenals, but luckily this is one autoimmune condition that is relatively easy to treat.

[Karen]

Helene - I'm with you on the HC - by body absolutely HATED IT! Unfortunately, I never felt like I had good energy. Instead, I had the crazy-oh-my-gosh-rip-my-skin-off kind of energy! For me, it was a sign that I didn't need it, that there was something else in the way. I have Adrenal Fatigue and have read most of it. It didn't resonate with me as much as I had hoped, but I got a few good nuggets out of it. And, no, surprisingly, no one has tested me for mono or EPV! One endocrinologist offered to, but when I actually went for my draw, the nurse had no record of it. (The endo was useless, so I didn't bother to go back and ask as she wouldn't have done anything about it anyway.)

Since my original post, I went to see the head of the integrative medicine department about my energy. The problem is that my levels have always been borderline low - not low enough for someone to rush to help me. He was pretty quick to put me in the chronic fatigue category (GRR! In my mind, that's just a catch-all like IBS.) but suggested we test my zinc as that was the only test no one's done. Luckily, it came back low. Ha, finally, something was low enough! Since it's critical for enzyme activity, thyroid function, etc., I'm really hoping that's at least one of the missing pieces of the puzzle. I wonder if that's why I don't react to most medications well at all... He 'prescribed' Co-Q-10 and zinc. I've been on it for a few days and am seeing some changes, though I don't know yet if I can chalk it up to the supplements. I've also increased my thyroid hormones very slightly and am dosing one more time in the late afternoon (I hadn't done that before). He also 'prescribed' ginsing but I'm holding off on starting that until I know for sure how the others are doing. Don't want to try too much too fast.

Kim - were your electrolyte levels off on a blood test? Although I crave salt, my electrolyte blood results are always fine, and my aldosterone was on the lower end of normal end of normal but not low enough. I've tried salt in water but it gives me an instant headache, so I just stick with generously salting my food.

I hate that others have gone through similar, but am incredibly grateful that I'm not the only one going through this. Thanks everyone for your input and experiences!

[KimSilverton]

Karen - glad to hear that you are making some headway. Yes - in the past my electrolytes have gotten so off that I had to be hospitalized. Potassium way too high; Sodium way too low - I just pee out all sodium if I don't have enough mineral-corticoids on board. Anyway, I totally understand that sometimes its sort of 'easier' to have more extreme symptoms like mine (for more obvious treatment) than borderline/nuanced results. Good luck!

[Alexandra Kreiman Walters]

I have Addison's and Hashimoto's, too. I didn't tolerate the steroids well until I started eating a Paleo diet. The combination of steroids and a diet high in simple carbs (I was a vegetarian) made me balloon up to 250 lbs. I never slept. My skin was a wreck. After Paleo I was able to lose 70 lbs and stabilize my blood sugars. Some people do better with Prednisone. I do better with Cortef ( hydrocortisone.)

I also needed the Florinef to feel halfway human. I tried to "wean" myself off Florinef because I get tired of being physically dependent on multiple steroids. I felt awful! You might want to check the difference between your sitting and standing blood pressures. Orthostatic hypotension is a sure sign that aldosterone (fludrocortisone) needs to be replaced. My intense salt cravings and dizziness go away when I take my Florinef consistantly.

I hope they save your adrenals. It's hard to deal with the fact that I have to take steroids or I will die. Every time I see someone complain about high cortisol, I get a little jealous. You need it to live!

It is my opinion that anyone with adrenal fatigue should learn the signs and symptoms of adrenal crisis. It's a medical emergency. I've had blood sugars of 23 and blood pressure of 80/64 with a resting pulse of 160. I can't think straight when I'm tanking, so it's important that I share the warning signs with my husband and children. I also wear a medical alert bracelet.

[Alexandra Kreiman Walters]

I should also mention that I am trying to control my stress better. Since I don't have a physical means to respond to stress, I had to make some lifestyle changes. For a few years I was working full time, going to school full time, and raising kids alone while my husband was deployed. I quit my job this August to concentrate on school and my children. Since I can't control my husband's deployments, I ask my friends and neighbors for help when I need it. (That was hard.) It's been a few months and I'm finally starting to feel better. I napped every day for months! I found a spiritual advisor and started working on that aspect of my life, too.

I'm stubborn, so it was brutally painful to follow common sense health advice, but the message is finally sinking into my hard head.

[Mummy7]

Karen,

I'm wondering how you are doing now? I am hoping you have gotten results with CT3M and Whole30, and anxious to hear.

I am with you on so much of what you said, I have chronic fatigue (3 1/2 years now) ... i tried the adaptagens, HC, and have been on CT3M for 6 months now. But I still don't have it right - I am pretty dead! I use a wheelchair now if I go someplace where walking is required. And this is recent for me, just in the past month.

I am only 1 week into Whole30, but I have eaten so clean for so long - no grains, only limited raw dairy, stevia, limited fruit, all organic, etc etc Hoping this will help my inflammation, which I know is a big factor for me.

Please let me know how you are doing.

[Helene2310]

Mummy7-

You are not alone with Chronic Fatigue. I have been battling chronic fatigue for about 3 years now as well. I have high levels of Epstein Barr which makes it very challenging. Like you, I have had a restricted diet for a while and tried many diets. I am currently following the autoimmune protocol and enjoying it. I had some downs when I started but am starting to see improvement and energy. Through a lot of research I have discovered that I have Leaky Gut, which is very common for CFS because your body does not digest your food properly. I am currently doing better than I have the past few years, here are a couple of things that have really been working for me:

-Autoimmune Whole30 (ensuring to include lots of avocados and sweet potatoes to help with energy and drinking bone broth everyday!)

-Taking HCL with my meals to help the food digest properly

-Ensuring I sleep 8-9 hours and dont lay in bed during the day no matter how tired I am

-Graded exercise (very hard at first but I started by walking 2-3 minutes a day and slowly building up as well as gentle yoga)

-Taking Ribose, low does L-carnitine, and mixed mineral vitamin c powder (I know supplements are not recommended on the whole30, my goal is to get off all supplements however right now my body needs the extra support)

CFS is very challenging but I do believe I am on the right path by following Whole30/Paleo, it just makes sense and my bod responds well. You may not have wanted all that information but just thought I would share.'

Good luck, you can do it!!

[jeepifer]

Have you tried d-ribose? I had really good luck with i.! Took about 2-3 weeks, but to my shock, I started to feel better!

[Helene2310]

Yes I do take it! I have noticed great results with it in my muscle pain and energy!

Glad you had results as well Do you have cfs?

[Mummy7]

Helene,

Thank you for all the info. I am always glad to hear what is working for others with CFS. You share some good ideas; some I have tried, some I have not. I am doing fine with W30 (feeling sick, but managing with the food allowed), but cannot imagine giving up eggs and nuts. I did that (and more) when I was on GAPS last winter, but never saw any improvement. I am sure my gut is healthier from that but no change in energy. I happen to have my jar of ribose sitting on the kitchen counter. I was just getting ready to start it up again when I got sick last week. I have taken it off and on for three years, and it always seems to help in the beginning but the improvement doesn't last (for me.) And I need to get out the L Carnitine. I put all supplements away when I started GAPS, and have only reintroduced what seemed needed. I take vitamin C powder several times during the day, esp with my iron.

Because I am doing CT3M, I am in bed from 10-8. And no naps! It can be hard, can't it? When you feel like you are going to fall over but you cannot lie down! But I know that it is so important to keep the circadian rhythm on target that I do whatever I must to stay up.

I look forward to getting back to exercise. I am slowly working back up to snuff with my weights. Nothing drastic, but I lost so much muscle tone with my cortef that I am glad to be doing something. Hoping soon to get back to gentle aerobics. Normally I exercise 6 days a week, so it is difficult to be so dead.

How long have you been on W30? Have you done the autoimmune portion the whole time?

[Helene2310]

Mummy7-

Glad to hear that some things we are doing are similar, very encouraging! I have been dipping into whole30 since October but I was not 100% compliant a couple of times and want to do it completely 100%. So I am now on on day 4, and will not be breaking this time. I have been following autoimmune my whole time dipping into Whole30. I think I do need to heal my gut, and think I need to try 60-90 days for the whole30 autoimmune. However, I go back and forth with the autoimmune protocol... I sometimes wonder if I need to be doing the AI protocol for CFS or if it is not necessary to be so strict as long as I follow the regular whole30 :/

Do you feel that nuts and eggs don't change anything for you? What about nightshades? What is CT3M?

I agree with the muscle tone, it is hard to go from being athletic to none at all. Have you had ups during cfs where you have been able to workout or no exercise at all because you're just too fatigued? I sometimes go in spurts but nothing regular and nothing compared to where I was so I now need to try to do a little bit no matter how I feel, its just so hard sometimes...

[Karen]

Karen,

I'm wondering how you are doing now? I am hoping you have gotten results with CT3M and Whole30, and anxious to hear.

I am with you on so much of what you said, I have chronic fatigue (3 1/2 years now) ... i tried the adaptagens, HC, and have been on CT3M for 6 months now. But I still don't have it right - I am pretty dead! I use a wheelchair now if I go someplace where walking is required. And this is recent for me, just in the past month.

I am only 1 week into Whole30, but I have eaten so clean for so long - no grains, only limited raw dairy, stevia, limited fruit, all organic, etc etc Hoping this will help my inflammation, which I know is a big factor for me.

Please let me know how you are doing.

I'm actually improving! I'll admit the Whole30 didn't add much improvement - I definitely think I need way more carbs. I've been off-roading a bit and feel much better with more carbs than I was getting on the Whole30 and tend to do better on those days. The next Whole30 I do will have the addition of a few more that aren't typically allowed.

But, my biggest breakthrough has been zinc. I found a new (integrative) doc that said I had every test under the sun except that one. Sure enough, my zinc levels were well below normal. Despite craving and eating a ton of high-zinc foods (even before I knew they were high in it and that I needed more zinc - smart body!), it wasn't enough and I started supplementing. And within the last month or so, I'm definitely more myself. I had to drop my level of cytomel a bit and my most recent labs were excellent despite. My doc and I even agreed to switch me back to NatureThroid to see if zinc will help me convert T4 to T3 now. I'll slowly start adding it in and slowly start decreasing cytomel, but will probably keep with the CT3 timing. The 3 am / 7:30 am / 12:30 pm dosing schedule seemed to work pretty good for me. So that's my update in a nutshell!

The integrative doc gave me a few other supplements to try (d-ribose was one of them!) if I felt I needed to tweak a bit more. Sam-E is one that my therapist suggested as well. I'll be honest, I wasn't impressed at all by his suggestion to slowing increase activity, because for me, I either had energy to workout as I pleased OR I was dead to the world and stumbling when I walked - and he didn't seem to understand that. But, at least he was smart enough to test my zinc levels and I'm happy enough with that.

I'm sorry you're feeling dead - I know that feeling all too well. Any chance you live in an area that doesn't get a ton of sun? Since you said you've only recently had to use a wheelchair, any chance your vit. D levels are a bit low, contributing to the other stuff you have going on? Are you eating enough carbs? I've been told protein is the most difficult to digest, so it's necessary to get a good balance of carbs and fats, too. I know I was eating waaaay too much protein, but again, because my body was craving it for the zinc. And have you tweaked your CT3 dosage/timing enough to know that what you have is the best it can be? I'm told the author is pretty responsive to questions on FB if you want another set of eyes on what you've tried in that regard. Keep posting, keep checking in, keep getting ideas, and don't give up!!!

[Mummy7]

Helene,

I don't really see a difference in eggs or nuts for me. But once you have been off them a few weeks, you could try adding them in one at a time and see if either bothers you. After doing ALCAT (food sensitivities test and diet to heal), I am pretty aware of when things bother me. I don't think nightshades are either, but I don't know for sure.

CT3M is a method of taking T3 (thyroid) according to the circadian method to boost the adrenals into producing the cortisol needed. There is a four hour window in which they produce the majority of the cortisol for the day, and so we try to find the time and dose that works best for us and our adrenals. There is a page about this on the STTM site (Stop The Thyroid Madness) which is a good overall view

http://www.stopthethyroidmadness.com/t3-circadian-method-for-adrenals/

and there is a yahoo group where patients help other patients figure out how to accomplish this. They have been so helpful, some very good moderators giving of their time to help others.

Let me know if you want more info. Are you taking thyroid?

[Mummy7]

Karen,

So glad that you have found what works for you - the zinc and the right dose/time. I am going to go through all my labs and see if I have been tested for zinc and if not, try to get that tested next time I go for iron labs. Is there anything that you noticed that might help me know if it is a potential problem for me?

And very glad to hear you are doing better with your cm. I think yesterday was my first 'not bad' day in 6 weeks! I just reset last week, so hoping I am onto something. I do use topical vit D when I don't get sunshine.

Oops - daughter has an online class now. Will try to write more later if I didn't respond to everything.

[Karen]

Karen,

So glad that you have found what works for you - the zinc and the right dose/time. I am going to go through all my labs and see if I have been tested for zinc and if not, try to get that tested next time I go for iron labs. Is there anything that you noticed that might help me know if it is a potential problem for me?

Glad you had a good day! Those are always so precious, especially when you're not sure when the next one will come along!

Here's a little synopsis on zinc: http://www.healthguidance.org/entry/15319/1/Zinc-Deficiency-Symptoms-and-Health-Benefits.html The symptoms are pretty vague. My regular (integrative) GP said the new (integrative) GP was pretty proud of himself for thinking to check zinc. Though when he brought it up, he said it was very unlikely that it'd be low, but if it was low, it'd explain a lot of what was going on.

I should add - I also added CoQ 10 to the mix along with American Ginsing at the new alternative GP's suggestion. I'm afraid to go off any of them in case that's helping, but I don't really know how much of a difference they are making.