The 12th Invest in ME Conference, Part 1
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Are Adrenal Extracts worth trying? (plus rant about my life)

Discussion in 'Adrenal Dysfunction' started by outdamnspot, Jan 9, 2016.

  1. outdamnspot

    outdamnspot Senior Member

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    I've posted a few times about my issues over the past month or two. I'm sorry if I'm repeating myself; I just feel completely backed into a corner and don't know what to do anymore.

    My main symptoms are:
    * fatigue
    * vertigo/dizziness
    * severe reactive hypoglycemia (levels too not drop dangerously low -- they peak after eating, then drop .. which I presume triggers a response) and constantly having to eat every 2 hours or so .. yet rarely feeling full.. however, I become mentally impaired if I don't eat.
    * 20kg weight gain from the eating
    * most supplements, stimulants, cortisol-lowering agents (melatonin, adaptogens etc.) worsening symptoms and hunger
    * feeling profoundly overwhelmed by everything -- my waking state is basically just an experience of constant terror and fragility
    * cold waking temperature (35.2-35.5 degrees Celsius)
    *akathisia/restlessness/cognitive disorganization

    My living environment is awful. There is very little I can do try and relax or take it easy. It's a small house and you can hear everything happening inside -- and to cap it off, we have two dogs who bark outside and drive me insane. So I do nothing all day, then after 9pm or so, try to concentrate on some work .. and usually stay up until 4am. But there is no point trying to correct my circadian rhythm, because the noise-sensitivity/hypervigilance means I can't concentrate at all anyway. I have become too unwell to even leave the house, and I think constantly pushing myself to get away is what drove me into this state.

    My mother is an emotionally abusive Narcissist. She'll seem like she grasps what's going on when I explain how I feel -- then try and force me out of bed or tell me that "the less you do, the less you can do". She'll offer to help me out financially, then make me feel guilty for the whole process. My father is so emotionally checked out he could care less, except when it comes to 'wasting money' on medical stuff. I'm not a citizen where we live, so can't get any financial help.

    I've seen an endocrinologist. She tested Thyroid etc. I had to fast and was too unwell to do half the hormonal tests like Cortisol/DHEA etc., so all she really had was Thyroid, which was fine. She then dismissed my case after that. I later realized I'd been trying a peptide in the weeks leading up to my appoint that might have improved Thyroid function, so don't know how reliable those test numbers are anyway.

    My GP is nice and has been pushing me to go through the public system, but also keeps telling me that "they aren't going to find anything anyway" (which is encouraging and helpful).

    I saw an integrative GP .. she was really expensive and I didn't have much confidence; she kept talking about Pylouria, and I had to push for a Saliva Hormone Profile. But it's all so expensive -- seeing her, getting the tests done -- I just can't afford it, and have no idea if it will lead anywhere. She did order a free blood test to check fasting Cortisol/DHEA, plus basic blood count etc., so I will try do that.

    I'm doing a Ketogenic diet for the reactive hypoglycemia, but it isn't helping much (been on it about 14 days).

    I just feel like everyday is just about basic survival, and I can't get any momentum going or know which direction to turn. Ideally, I wish I could just work with a good integrative doc, but the process is so costly. After years of battling mental illness (and not getting anywhere), the health issues are just driving me to complete despair, and I feel backed into a total corner.

    So I guess this is just a really roundabout way of asking whether an Adrenal Extract might be worth trying, since I have a little bit of money left and could afford to order one .. I feel like my issues are stemming from low cortisol/HPA-axis dysfunction (or possibly thyroid), but don't know how to improve that .. or even just stay alive long enough to try and find help over the next few months .. I really need something that will help.

    Sorry again if this is long, or a bit much .. just really feeling it all tonight.
     
  2. outdamnspot

    outdamnspot Senior Member

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    Oh and I guess if an Adrenal Extract might be worth trying, could anyone possibly recommend something to start with? I am a bit sensitive and prone to overstimulation ..
     
  3. sarah darwins

    sarah darwins I told you I was ill

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    Hi ods,

    First, best wishes, and sorry you're in such a crappy situation. Sort of goes with the illness, although I realise that's not much comfort. But you're not alone.

    No clue about adrenal extracts, but I wanted to ask if you've tried a gluten-free diet. Your current symptoms are very close to ones I had before going GF. When I went GF, I had massive improvements, including the total disappearance of the vertigo and losing about 25 pounds. Took about 3 months for that weight to come off, but the positive effects were apparent within a week or so. Much improved sleep, among other things.

    Before going GF I was eating a lot and craving — I mean absolutely craving — carbs all the time. Maybe that rings a bell.

    I've been tested for celiac, and it's negative, but there's no question I'm acutely gluten intolerant. If I eat it I get nausea and vertigo, including if I ingest it unknowingly and only find out afterwards by retracing what I've eaten (this happens every now and then).

    If you're not getting any benefits from the ketogenic diet after 2 weeks, is it worth persisting with that?
     
  4. ahmo

    ahmo Senior Member

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    I had excellent results w/ adrenal extract, as well as hypothalamus and pituitary. These formed my basic support for a couple years, until I then was able to get my own body working better. I chose Enzymatic Therapies because it contained adrenal + adrenal cortex. I can't remember if I tried other brands. Nutricology makes one, I believe, as well as hypothalamus.

    My current understanding is that ketogenic diet might be acting as a stressor to adrenals. We are much more vulnerable than people without ME. Dr. Alan Christianson is selling an Adrenal Reset diet and book, and I'm linking also Yuri Elkaim, whose talks about fat loss also include suggestions for protecting adrenals.

    http://drchristianson.com/adrenalre...09aadfdc258d67d5fe5f6c3135dfebccb733eb8181f4b

    https://yurielkaim.com/metabolism-masterclass/6triggers/
     
  5. Sidereal

    Sidereal Senior Member

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    Sorry to hear about your difficult situation. I don't know anything about adrenal extracts but if you are having HPA axis issues you should know that a ketogenic diet can greatly exacerbate that. Thousands of people have anecdotally reported adrenal and thyroid crap-outs after long-term ketosis.

    Secondly, you mention battling a mental illness. I of course would not encourage anyone to stop their psychiatric medications if they're on them but I just wanted to mention that many of them, especially certain atypical antipsychotics, often cause metabolic derangements including hypoglycaemia and weight gain, and eventually obesity, type II diabetes, dyslipidemia. So, I don't know whether this applies to your situation but I thought I'd mention it in case it does since it could explain some of the symptoms you've talked about.
     
  6. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    You should only take adrenal extracts if your adrenal function is low. The morning cortisol blood test will show if your adrenal output is low or high. If you don't do the blood test, you could do the salivary cortisol test.

    I thought my adrenals were not functioning well, just based on questionnaires on the Internet. However, when I got the results of my salivary cortisol back, I had a normal rhythm, and the first test of the day (8 a.m.) was at the very top of the range for normal. I also had an 8 a.m. cortisol blood test about a week later and it was also at the very top of the normal range.

    Taking adrenal extracts were not needed in my case, and they might have done some harm had I taken them, or at least not added anything useful.

    My point is, you should do either the salivary or blood cortisol test, then based on those results, you can decide if you really need adrenal extracts. Whether they will help you or not is another topic.
     
    jimells and Mary like this.
  7. Mary

    Mary Senior Member

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    @outdamnsport - I first took an adrenal glandular after muscle testing done by my chiropractor indicated that my adrenals were wiped out - I was weak as a kitten. I had to take rather a high dose, but within a couple of days my energy started to come back.

    Adrenal glandulars can be powerful and thus should be taken only if testing, whether salivary or blood or, in my case at least, muscle testing, indicate that they are warranted.

    Do get the free testing done that your integrative GP ordered - you need all the information you can get. You might have high cortisol at night (which I used to) which can cause severe insomnia and high cortisol in general can make it hard to deal with any sort of stress. There are supplements which can help normalize cortisol levels (including Seriphos), but you need to have the cortisol testing done first.

    And re the barking dogs at night - maybe invest in some inexpensive ear plugs - seriously. Someone on this board said that the cheap ones made by 3M worked good. You can get 200 pairs for around $17 on Amazon.
     
  8. outdamnspot

    outdamnspot Senior Member

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    @sarah darwins yeah, I've been gluten-free for about 5 years and continue to maintain it.

    I've been persisting with the keto diet because my symptoms were so hellish prior to initiating it that I can't go back to that .. I am eating almost as often on this diet, but when I get 'sugar crashes', they aren't nearly as disabling, so I'd like to keep seeing if I might adapt.

    @Sidereal I'm not on any psych meds .. I've become completely intolerant over the past 2 years ..

    @ahmo were you taking the ADRENergize? That's the one I've been considering.

    @CFS_for_19_years well, my conundrum is that I can't really afford the salivary cortisol test .. only the morning blood test, which won't tell me a lot. I just feel like I'm really on the razor's edge with everything, and it's down to just a simple matter of trying to survive until I can try to afford proper treatment/testing. Since the extracts are relatively inexpensive, I thought there might not be much harm in trying one for a week or two -- I really have nothing to lose at this point, aside from maybe feeling temporarily worse -- the only issue is that I obviously couldn't do the saliva test once I was on one.

    @Mary again, I will do the free testing, but just can't afford the salivary one .. I do think my cortisol is high at night because that's when I actually feel the best and most 'together', hence my suspicion that cortisol during the day was low. Things that lower cortisol actually make my symptoms significantly worse. I was thinking of trying the Enzymatic Therapy product .. I believe it's been processed to remove all the hormones ..
     
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  9. caledonia

    caledonia

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    Here are some ideas (some might be better than others):

    +1 on the earplugs so you can get some peace and quiet. I use 3M E-A-R Classics from earplugsuperstore.com - http://www.earplugstore.com/eclpvcfopln2.html or you can get one of their sample packs and try out various kinds to see what works best for you.

    Try the adrenal self tests on this page: http://www.stopthethyroidmadness.com/adrenal-info/
    See if you can confirm that there is an adrenal issue.

    See if you can apply for disability from the country you're a citizen of, instead of the country you're living in.

    Get money from your parents without them knowing - ask for money for "gas" or whatever, but actually save it for the adrenal test. Or gradually and carefully steal small bits of money from them so they don't notice - change from the change jar, a few dollars and here there from a purse or wallet. It will all add up over time.

    This is about survival and they're not nice people, so I don't think you owe them the courtesy of being honest with them. Plus it might make you feel better that you're putting one over on them.

    Figure out why the dogs are constantly barking and train them not to bark.

    Question: what type of psych meds were you on, how long were you on them, when did you get off, and how long did it take to taper off? When did your present symptoms (especially akathisia) start in relation to getting off these drugs?
     
  10. ahmo

    ahmo Senior Member

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    yes.
     
  11. Valentijn

    Valentijn WE ARE KINA

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    I'm not sure that advising someone to commit a crime is a good idea.
     
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  12. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    The morning cortisol blood test will tell you if your adrenals are not functioning well. Normally there is a surge at 8 a.m. (when you should be having your blood drawn). The cortisol reference range for my lab is 6 - 19 mcg/dL for an 8 a.m. blood draw.

    My most recent result was 19, so I knew my adrenals were NOT low, in fact they were functioning close to being on overdrive. About 15 years and 20 years ago, both times my cortisol levels were around 7. I didn't feel any different when my cortisol was high compared to when it was low. You cannot use questionnaires on the Internet to determine if you are high or low.

    Adrenal extracts could make you feel worse if your cortisol levels are already high.
     
  13. dannybex

    dannybex Senior Member

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    That's interesting @ahmo. I could've sworn that Enzymedica stopped making Adrenergize -- which yes was/is very helpful -- so I switched to Vitacost's Adrenal Complex, which is basically the same thing, with a couple extra extracts added. Definitely calms me down. Wish I had been taking it all along…
     
  14. outdamnspot

    outdamnspot Senior Member

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    Okay, well I'm going to try and get the morning Cortisol/DHEA test done over the next two days ..
     
  15. outdamnspot

    outdamnspot Senior Member

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    I do use earplugs, but can still hear the barking through them. I have to blast white noise on top of that to get any kind of peace, but doing that for hours on end isn't a fun way to live.

    I've looked into it .. I can't.

    I was actually doing that for a little while, to be honest .. I wasn't proud of it, but it was the only way I could get enough to eat with the reactive hypoglycemia. I've set up a crowdfunding page to try and help pay for the testing, doctors etc. and my brother said he would share it on his Facebook page.

    One is too highly strung and reactive to be trained -- he should be on medication, but again that isn't permitted by my family, for no rational reason ..

    I've been on pretty much everything, including MAOIs. I started developing akathisia as a side-effect to SSRI's quite early on. I had a bad bout of akathisia that lasted for months after stopping Mirtazapine a few years ago. The symptoms now started after I came off of Ambien, but I was only on a low dose for a couple of weeks. Going back on it isn't really an option, and I don't think it will fix my current symptoms -- the last time I tried that w/ the Mirtazapine, it was of no benefit.
     
  16. adreno

    adreno PR activist

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    It was the ADRENergize that totally screwed me over, after about 8 weeks I developed severe POTS/OI which has lasted to this day (almost 8 years now). Not saying everyone will get this side effect, just be careful with this stuff.
     
  17. caledonia

    caledonia

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    Some earplugs are better than others, like the 3M's I use. Even a few decibels of protection increase might be enough. Decibels are logarithmic, so each decibel higher in protection is actually 10X better. Adding ear muffs (like industrial ear muffs or gun shooting ear muffs) on top of ear plugs is another option.

    That doesn't seem fair that you can't get disability either from the country you're a citizen of, or the country you're living in. Have you consulted with a lawyer to see if there are any loopholes?

    Any way you could move back to your original country - stay with a relative or friend, and apply?

    Crowdfunding - good idea.

    The high strung dog is probably setting off the other dog. Before I say this, let me just say that I love dogs as much as anyone, so I'm trying to think of solutions that would help you without harming the dog - what if something happened to the high strung dog, such as he "ran away". Meaning, you secretly took him to a no kill dog shelter. Or maybe you could have a stash of dog tranquilizers that you could secretly give him if you were having a particularly bad day.

    Akathisia is the worst, I've had it. I agree - it looks like you should avoid pysch meds and sleep meds too.

    I had very severe akathisia from SSRI withdrawal for almost a year. I did a saliva cortisol test during that time and my adrenals had gone from almost zero (very severe adrenal fatigue) to five times higher than normal. My cortisol curve was literally off top of the chart.

    So it's possible your adrenals may actually be high at this time, instead of low. In that case you would want to take things to calm your adrenals, either Relora or Seriphos (phosphatidyl serine). Take it until the akathisia clears (might be something like 8-12 weeks).

    Have you been able to perform any of the adrenal self tests, and if so, what were the results?
     
  18. ahmo

    ahmo Senior Member

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    Enzymatic Therapies Adrenergize
     
    dannybex likes this.
  19. dannybex

    dannybex Senior Member

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    I know. :)

    It's just that they did stop it for awhile, and only had the herbal Adrenergize, which was not helpful in any regard. My problem is that I thought they permanently discontinued it. :(
     
  20. outdamnspot

    outdamnspot Senior Member

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    Okay, I'll order some with I have some extra money.

    I haven't consulted a lawyer or anything. Australia is pretty strict; I doubt there would be a way around it. Maybe when I am more functional, I'll look into it.

    I will probably eventually move back if I can, but that seems like a very distant dream. The problem is that I am quite mentally ill and treatment-refractory on top of everything -- before these health issues began, I could achieve some things with supplements, nootropics etc., but all that stuff is expensive. It seems a bit depressing to move away and end up living on nothing but bare disability; I would probably just stare at a wall all day. It would be ideal to have a normal family living environment where I was supported, but alas ..


    Lol, in all honesty, I just couldn't do something like take him to a shelter. Again if I had a normal family, we would say, "well, this dog is causing our son/brother tremendous distress .. his life is more important than the dog's" .. but it doesn't work like that in this household.

    I feel like I can subjectively tell the difference between high/low cortisol, based on how I fluctuate throughout the day and respond to supplements. Maybe I can't. But for me high cortisol is a very driven, survival-like state where I'm wired and highly strung, but desperate to keep pushing forward. Low cortisol makes me feel weak and helpless and overwhelmed by everything. I always feel best after midnight when there's presumably an upsurge. (I'm nocturnal because of our household).

    The problem is that because of the hypoglycemia/crashes, if I take anything that lowers cortisol to fight the akathisia (even magnesium or Melatonin before bed), it completely wrecks me and worsens my vertigo, hunger etc. So quite a difficult set of symptoms to contend with.

    My GP has got me an appointment with a hospital endo. I saw one 4 weeks ago and she threw my case out in 5 minutes after seeing "OCD" on my referral -- said it was all psychosomatic. I think if that happens again I may go postal .. I am very bad when dealing with specialists, I am very submissive, I walk in there feeling like my life doesn't really matter anyway, and I never challenge them or fight for myself.

    Not yet. I woke up at 9am today (usually sleep from 4am-1pm) to get the free one, but I felt strangely resilient .. it wasn't like my ordinary state .. maybe it was the sleep deprivation. I know I should've gone, but I want to do it when I'm feeling bad. I will go tomorrow or the next day. I'm also worried doing Keto will affect my results, since it supposedly raises cortisol ..

    Anyway, thanks for the suggestions and taking an interest in my life ..
     

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