Moderate cognitive impairment, weight gain, suicidal - at my wits' end with severe adrenal fatigue

I am literally at rock bottom with my adrenal fatigue. I have no social or dating life, I am rapidly gaining weight, my memory is getting worse, I'm starting to stutter and take longer to comprehend basic conversation and information. My cognition has deteriorated significantly over the past two years, from a creative writer and fierce debater to a mere inarticulate amateur. I lead a lonely life, preoccupied with the seemingly false hope of a miraculous recovery one day.

I find every passing day an effort. I cannot hold down a job without driving myself to severe exhaustion after only a couple of days. I cannot exercise. I sleep deeply for 10 hours every night, waking up feeling unrefreshed and groggy. I am prematurely aging and losing hair.

No method of adrenal support has helped in any way, whether it's nutrition, supplements or even salt to balance my electrolytes. Adrenal extracts, vitamins C, B5, adaptogens, earlier sleep, improved nutrition, T4 support - none of this has relieved any of my symptoms, and instead aggravated them.

The progress I have made is relatively good, but not good enough for me to enjoy an even decent quality of life.

I'm coming to the conclusion that I probably need some direct cortisol support, in the form of hydrocortisone.

Saliva tests indicate low cortisol and DHEA, but that was months ago when I was feeling slightly better. I'm suspecting my cortisol and DHEA are lower now, especially with the loss of body hair and poor sex drive.

Any advice? I know that the NHS does not acknowledge adrenal fatigue. It would take months on a waiting list to see an endocrinologist.

18 Replies

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  • I hear you Mike! Experiencing similar myself. I know you said you've tried all the supplements - but have you tried adrenal cortex rather than the whole adrenal extract? I've found that's helped me the most, even though there's still a long way to go. Whole adrenal extract made me feel worse - I guess it's the adrenaline?

    Apart from that I don't know what to suggest to you. I hope you don't mind me "tagging on" to your post as I'd be interested to see what other people come up with.

  • Yes, in fact I've purchased an expensive product from Dr Wilson called 'Adrenal Rebuilder'. Wilson claims that the product contains adrenal and hypothalamus glands but processed to remove the hormones, to not induce a stimulating reaction. I feel nauseous, dizzy and tired on them, and they definitely aggravate a lot of my symptoms.

    Those in later, more advanced stages of adrenal fatigue like me typically have more complex cases. Our endocrine system is also compromised, so that may explain my (suspected) secondary hypothyroidism.

  • Oh dear, it sounds like you've got it a lot worse than I have - and I was first diagnosed with so-called "chronic fatigue syndrome" back in the 1990s. :-(

    But if you're in a state of complete adrenal failure don't the NHS do something? (I'm assuming you're in the UK?) Is there some way to persuade your GP - or find another GP - to test you for this? Strangely enough, mine has just agreed to do a 9am cortisol test on me after recommendation from a rheumatologist I saw. I doubt if it will come out low enough for the NHS to treat me though, so I'll be back on with the adrenal cortex.

    Anyway, sorry I don't know what to suggest to help you more. I understand though - you're not alone in this. Hopefully, someone with more knowledge will be along to help/advise shortly. Take care of yourself.

  • Hi mikee5

    I'm sorry you are have such problems and at a young age as well.

    I know of two doctors - medical students about the same time (before blood tests became the 'be all and end all' of diagnosing by the TSH alone. One of them believes in getting the adrenals in order and the other that 'with NDT the adrenals recover themselves'.

    So, I did try adrenal extra and another adrenal but I had to stop as I was getting severe palps.

    When T3 was added to levo I immediately felt an improvement and am now on T3 only and feel well again.

    Is it possible for you to get a prescription for some T3 on a trial basis added to T4.

    Some of us have a gene defect in that we cannot convert T4 into sufficient T3 even though the TSH seems o.k. I haven't had a test but think I have a defective gene as I haven't had the problems I had on levo.

    Do you have a print-out of your latest blood test results with the ranges? If so, post them for comments. If not ask for a new blood test to be done and ask if Free T3 can be done too, then you would know if you were converting properly. Some labs wont do FT3 if the TSH and T4 is 'in range'. So you might have to do your own FT3 and Thyroiduk.org.uk has a list of labs and you get a small discount if you state the code.

    If your GP hasn't tested B12, Vit D, iron, ferritin and folate ask for these as we are usually deficient and can cause problems too.

    When you get a blood test for your thyroid hormones get the earliest possible appointment and fast. Refrain from levo for around 24 hours before the blood test and take levo afterwards. This allows the TSH to be a bit higher and doctors take the most notice of the TSH

    Your symptoms do sound hypo and T3 is the active hormone required in all our receptor cells, without sufficient we cannot function and the brain contains the most T3 cells. Some people also benefit with NDT (natural dessicated thyroid hormones) which contain all of the hormones our healthy gland would produce.

    hormonerestoration.com/Thyr...

  • Thanks for your reply. My thyroid results were tested last year:

    TOTAL THYROXINE(T4) 69 nmol/L 59 - 154

    THYROID STIMULATING HORMONE 2.87 mIU/L 0.27 - 4.2

    FREE THYROXINE 13.8 pmol/l 12.0 - 22.0

    FREE T3 6.0 pmol/L 3.5 - 7.7

    My FT3 was relatively high. I don't feel that much different from last year. It's costly to have these tests done privately and I'm not sure I can pay for another one soon.

    It is true that the adrenals need to be supported before treating thyroid issues first. I understand that the issue is insufficient coritsol - if the adrenals are not secreting enough cortisol then there may be conversion issues. It's all rather complex but I'm almost certain my hypothyroidism is secondary to my adrenal exhaustion, simply due to my symptoms and confirmed adrenal fatigue.

    I have taken T3 in the form of desiccated thyroid about a year ago and it induced a lot of strange new symptoms like frequent urination and numbness. Thyroid treatments don't seem to agree with me, but I'll look further into it and possibly arrange for another test.

    The conventional mineral and vitamin blood tests indicate optimal levels. Plus, I eat plenty of nutritious foods so iron, B vitamins and vitamin D are okay. It's interesting that B5 is typically depleted in individuals with adrenal fatigue but I'm not sure about that one.

    Thank you.

  • Thanks for your blood tests and as I'm not too good at deciphering someone will confirm what I state below.

    I understand about the cost of blood tests and as you say your FT3 was high but both your TT4 and FT4 are low in range . This is what Thyroiduk states:-

    TT4 = TOTAL T4

    Thyroid hormones bound to proteins. TT4 lowers when the thyroid is struggling.

    The approx. reference range for this test is 50 to 160.

    FT4 = FREE T4

    Thyroid hormones not bound to proteins. FT4 lowers when the thyroid is struggling.

    The approx. reference range for this test is 10 to 24

    FT3 = FREE T3

    T4 converts to T3 and is the only thyroid hormone actually used by the body's cells.

    The approx. reference range for Free T3 is 4 to 8.3

    We at Thyroid UK believe that you need to know your Free T3 level too because this will often show low if you are not converting, and high if you have blocked receptor cells. Even if you are converting, the body needs the extra T3 that a normal thyroid produces. There has been some research to show that people feel better on a mixture of Thyroxine (T4) and Triiodothyronine (T3). Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in patients with hypothyroidism – The New England Journal of Medicine Feb.11, 99 Vol. 340

  • The urination may have been due to reduction of oedema, facilitated by the T3 content of the NDT.

  • Mikee5, I'm so sorry to read you're feeling so bad.

    I've had a scan through your older posts and understand all this started after you went on a ketogenic diet.

    I hope you don't mind me querying this - but are you sure it's your adrenals? Bear with me a second. You sound so very sure and you may be right, but from what you've said, I'm not sure you've ruled out the other possibilities.

    What's your Vitamin B12 level? The symptoms you describe are common in pernicious anaemia / B12 deficiency.

    What's your ferritin level? Anaemia could account for some of the symptoms your describing and hair loss is often caused by iron deficiency.

    What's your Vitamin D level? Deficiency is incredibly common, and causes surprisingly dire effects.

    Have you tried going gluten free? Is it possible you have gluten sensitivity, be it coeliac or non-coeliac sprue?

    Any of the above, and particularly combinations of the above (again, very common) could be causing your symptoms. I don't doubt that your adrenals are low - but what's causing that? There's more to this than meets the eye - and in fact, given the thyroid blood test results you posted a while back, it isn't immediately obvious that your thyroid is failing - your body is just trying to slow you down because it needs rest. But why?

    What does your doctor say? I know many doctors just write us off as depressed in these circumstances, but has your GP even attempted to determine what else might be going on?

    Really feel for you, and hope that you're able to find some answers soon. x

  • Thanks for the response.

    A saliva test confirmed low cortisol and DHEA levels, obvious indications of poor adrenal output as these hormones are both concentrated in the adrenal cortex. Whether this is secondary to another issue is certainly puzzling but I don't think that there is anything else going on, and like I said before, the hypothyroidism is probably secondary to my adrenal fatigue which explains the weight gain and sluggish metabolism.

    I recently had the conventional vitamin & mineral NHS blood tests done - with all optimal results. I eat copious amounts of iron and B vitamin-rich foods so I doubt that is directly the cause. Rather, I do suspect steroidal and sex hormones playing a key role in the hair loss. Furthermore, I've been both dairy and gluten free for prolonged periods of time with no success or relief in my symptoms. Instead it has improved my digestion and acne, but that's about it.

    The acute adrenal crisis I experienced immediately after embarking on a ketogenic diet profoundly impacted my health so suddenly that it took me many months to figure it out. I know that my body needed a significant amount of time to recover from such a severe physiological event - but not 28 months (without any significant progress). I continued on a very low carbohydrate diet throughout my adrenal crisis and when quitting 3-4 months later, only experienced slow but gradual improvements in my health. My body has enough rest; excessive sleep, lack of exercise/vigorous activity, minimal stress etc.

    The NHS does not acknowledge adrenal fatigue as an actual condition. You either have Addison's or you're simply imagining things caused by excessive 'stress' or psychological issues. Indeed, it's rare for someone my age to suddenly be suffering with so many unexplained health issues, but I'm constantly patronised and schooled about how I actually feel or should feel by every doctor. Even in the private sector, where after a brief physical examination I apparently had 'no signs' of hypothyroidism. I guess I'd have to be fatter, sluggish and nearly dead to be even taken seriously. Most in the thyroid/adrenal health communities share the same experiences.

  • Hi Mikee5, thanks for replying.

    There's no way I'd want you to feel patronised or schooled, so I hope you didn't take my thoughts that way. Like everyone here, I just want to help if I can. I had a look at your saliva test results - we get quite a few folk posting them here! - but what was noticeable was that all 4 readings came back within their ranges. That's not often the case. I'd be the first to say that tests don't tell the full story, but it makes it less likely your adrenals are fully to blame (and of course things could have deteriorated since that test).

    You say you had optimal results for vits and minerals - was that our idea of optimal or your doctors? In our experience, they're often far apart! Do you have the results of those vits and mineral tests to hand - could you post them here?

    If you have malabsorption issues It would make little difference how much liver and spinach you eat, Many assume that a healthy diet covers off nutritional deficits but sadly that often isn't the case.

  • Dear Mike,

    These are all classic symptoms of B12 deficiency (you may eat lots of B12 rich foods, but that will have no effect if you have developed an absorption problem). Please get properly tested as soon as possible – neurological symptoms can become permanent if not treated. The serum test most likely given to you by the GP is notoriously inaccurate, and you can get all of these symptoms even well within 'normal' range. You need an 'active B12' test and also MMA and homocysteine. If you possibly can, get these done privately, as soon as possible and before any form of supplementation (this latter point being very important), as many GPs are uninterested and have minimal knowledge about B12 deficiency. Have you posted your original message on the PAS forum?

    They will very likely have a different response to this forum.

    I spent a long time going down the adrenal/thyroid route for these very same symptoms (I am a pianist who became unable to play or read music), and saw a miraculous improvement after a series of nine B12 injections. Sadly, the symptoms came back shortly after the injections stopped, but at least my GP can now see what the problem is and has referred me to a haematologist to follow up.

    Good luck.

  • Dear Oozlumbird

    Please, would you help me ask my GP for the correct B12 tests?

    I'm due to be tested on Monday but having read and watched videos although I grasp that the usual test is very flawed, I can't work out what tests need to be done.

    (I'll try to PM you to avoid this being an irrelevancy in the thread)

    So pleased to see you have found your way out of the deficiency.

    Thanks

    Penny

  • b12deficiency.info/signs-an...

    Please read the above link to become well informed. Your B12 needs to be around 1000 to prevent cognitive decline - you mentioned cognitive decline ! Anything under 500 can show up neurological conditions. B12 Deficiency - is in fact a neurological condition.

    I learn the hard way - having had my Terminal ileum removed as part of a surgery over 42 years ago I was not told I would need B12 treatment for the rest of my life. In 2007 I had spinal surgery for Stenosis. I am now better informed and I believe that the stenosis was in fact de-myelination of the spinal cord - caused by B12 Deficiency. I started B12 injections weekly over 18 months ago and am enjoying the progress :-) Now in my 70th year - so it has been a long wait.....

    The Terminal Ileum is the part of the bowel where the B12 molecules are metabolised and returned to the liver.

    Hope you soon feel better.........

  • Have a look at Marek Doyle's website, he specialises in adrenal fatigue, he helped me a great deal.

  • I have taken supplements for years some of which include a small amount of B12 but recently I purchased Jarrow 1000 B12 lozenges and I am feeling a difference in my wellbeing, hard to explain but more alert, I realise some may need injections or more help in this regard, it is certainly well worth looking into.

  • It sounds more like low thyroid to me. Do you have any tests?

  • Hi, this year I've felt the best I ever have and I believe it's 3 things. The first thing I changed what I ate. I joined Kick Start Fat loss and the eating plan although it's cutting out a lot of foods has really worked for me. I now eat mainly home cooked good quality meat,fish and vegetables. I avoid sugar and processed foods. I have underactive thyroid and hashimotos autoimmune disease so I am allergic to wheat. This diet cuts out potatoes, white rice, sugar any wheat or gluten products and dairy. However in the first 2 weeks I'd lost 10lb and started feeling so much . I then started on 20mg of T3 and I kept improving. Although I am now on 10mg of T3 I still feel good. The weight has continued to fall off and in 6 months I was 4 stone lighter. The third thing is sleep. I started going to bed at 10pm, I was normally up til past midnight and recently I've had a few late nights and I can tell because I'm not feeling as good as I have been. So the sleep is as important as the medication. But overall I think it's the diet that has literally changed my life for the better. When you read books about fat loss. Especially the science of fat loss by Phil Richards you start to understand the link between what you eat and how it affects you.Kick start is about getting your hormones balanced through what you eat. Rachel Holmes is the lady who invented Kickstartfatloss.net please give it a look. For me it was hard the first few days as you are giving up a lot. But to get me to where I am now feeling the best I have in years, it is worth it. Not to mention I'm now a size 12 and I haven't been this slim since my late teens.So please Don't give up there is hope. If you need anymore information please ask. Good luck.

  • I don't know if this will work for you Mike, but I have been using Peptides to reset the adrenals, I have certainly benefited. It's a Russian developed therapy that uses tissue specific proteins to trigger building activity, in this case, adrenal gland tissue. I'll pm you website details. Also you'd surely benefit from taking DHEA if you don't already. Sorry you are having such a crap time.

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