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Adrenal Fatigue?

Messages
15
Location
UK
ok - thanks Ema thats really encouraging.

Im going to push to see if I can get to an endo...I have checked out the links and Birmingham is about 2 hours from me, I might be referred to someone more local...I will ask my clinic about this also

Who knows if it is something like Addisons, it might be that I don't have CFS or Fibro at all, or maybe I have all 3!...I do suffer low blood pressure, i am thin, dizziness, muscle aches, insomnia and fatigue, nausea, are most of my symptoms...I continue to work part time and I have 2 little kids 3 and 5...all such a handful!

At next visit I will gather this info and take with me and say I need to be referred to an endo...I also had an MRI and they found a pineal cyst on my pineal gland...not sure if thats anything to do with anything, maybe an endo can help with that too!
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
ok - thanks Ema thats really encouraging.

Im going to push to see if I can get to an endo...I have checked out the links and Birmingham is about 2 hours from me, I might be referred to someone more local...I will ask my clinic about this also

Who knows if it is something like Addisons, it might be that I don't have CFS or Fibro at all, or maybe I have all 3!...I do suffer low blood pressure, i am thin, dizziness, muscle aches, insomnia and fatigue, nausea, are most of my symptoms...I continue to work part time and I have 2 little kids 3 and 5...all such a handful!

At next visit I will gather this info and take with me and say I need to be referred to an endo...I also had an MRI and they found a pineal cyst on my pineal gland...not sure if thats anything to do with anything, maybe an endo can help with that too!
Interesting...a pineal cyst can also cause headaches, dizziness, blurry vision and nausea. Very similar symptoms to AI, actually. And if it is secreting melatonin, that can also cause low cortisol and disruptions in the HPA axis.

Sounds like you might need a neuroendocrinologist or a neuro-opthalmologist....that's a battle to get diagnosed as well since most consider pineal cysts to be asymptomatic. You'll have to fight them to show that you are symptomatic to get it resolved. Typically they can surgically remove through the nose pretty easily if that is shown to be the issue.

Keep at it! Sounds like you've got some really important clues...
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
In 1995, I was perfectly healthy, (aka no CFS/ME) an Endocrinologist diagnosed me with "relative adrenal insufficiency" which I know now is a bogus disease. He put me on 7.5 mgs cortex. Within 2 months I had horrible allergies which I never had before and my immune system was crashed per this doctor. I felt horrible.

Instead of supporting my adrenals he crashed them. I then got a virus and never recovered.

And this guy was the top one in the county.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
In 1995, I was perfectly healthy, (aka no CFS/ME) an Endocrinologist diagnosed me with "relative adrenal insufficiency" which I know now is a bogus disease. He put me on 7.5 mgs cortex. Within 2 months I had horrible allergies which I never had before and my immune system was crashed per this doctor. I felt horrible.

Instead of supporting my adrenals he crashed them. I then got a virus and never recovered.

And this guy was the top one in the county.
I'm so sorry this happened to you, @minkeygirl. It's a common story unfortunately.

Treating people with very low doses of hydrocortisone hardly ever works because it suppresses more cortisol than it replaces which leaves you with less than you had to start with. This can also cause horrible side effects like adrenaline rushes and dizziness and general feelings of unease which leads people to abandon treatment when what they really need to do is raise the dose instead.

The immune system is dependent on cortisol to fight infections. With too much or too little, the immune system can't do its job properly. Unfortunately, most people only know about the *too much* part from super high pharmacological dosing of steroids. Dosing for AI is much lower and physiological and much more nuanced than that and requires quite a bit of trial and error.

I, too, ended up with all the viruses after going undiagnosed with low cortisol for probably years. It's amazing what damage low cortisol can do to the immune system and how much trouble it is to fix it after it has all gone wrong.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I went to him on the recommendation of a therapist because my hormones were out of whack. I had no clue what an endo did.

What annoys me to no end, besides the obvious, is that I wasn't really sick or had a real adrenal problem. I was told years later that that was the "diagnosis du jour' that people were jumping on for some reason. Maybe I was his guinea pig.

I'm off cortisol now but obviously, the damage has been done.
 

Plum

Senior Member
Messages
512
Location
UK
@Wackersjackers I have/am in the same situation as you. No endo in the UK will accept your saliva test results. In fact mine got angry with me when I asked if it was something they ever did. I have seen 5 endo's. While it's good to get checked out by an endo, IF you've had cortisol, oestrogen and progesterone already tested by a Dr. it's unlikely they'll do much more. BUT you could get lucky! The NHS is limited in these chronic health problems.

As far as supplements go, tread carefully. There are a lot recommended - I've taken them all and none helped. A Paleo diet with moderate carb has helped me the most but nothing else. I think also some of the ones recommended by Genova are in fact oestrogen boosters which is not usually what is needed.

Also, if you ever seek advice for your problems with a US Dr. they may recommend bioidentical progesterone - do your research thoroughly as this stuff messed me up for 1 year despite there being a logical biochemical reason for trying it.

Good luck and I hope you manage to get some improvement soon.
 
Messages
15,786
Multiple people called "BS" on the claims made in the 2nd link, and the author basically admitted that they were over-stating things for dramatic effect. In comment 17 they acknowledge that cortisol can be accurately measured in saliva. There are also published papers supporting the accuracy of salivary cortisol.

I'm pretty sure we've had this conversation before.
 
Messages
15
Location
UK
ok thanks everyone for the kind replies and support.

Plum - I agree the NHS is really difficult to fight. And I just don't have the energy right this minute. My Clinician has recommend Adrenal Cortex supplements. Could then this damage me further? I don't know what to do now.

Can adrenals get better without support? Just with rest and good diet etc and general looking after yourselves?

I haven't had any previous tests on hormones except thyroid. I did however supplement on melatonin throughout the summer and that helped me sleep a bit, felt better over this time, then after 6 weeks went downhill again.
I also take the contraceptive pill and have done for years...could this be contributing? Also my thyroid is edging on overactive but always has been
 

Plum

Senior Member
Messages
512
Location
UK
ok thanks everyone for the kind replies and support.

Plum - I agree the NHS is really difficult to fight. And I just don't have the energy right this minute. My Clinician has recommend Adrenal Cortex supplements. Could then this damage me further? I don't know what to do now.

Can adrenals get better without support? Just with rest and good diet etc and general looking after yourselves?

I haven't had any previous tests on hormones except thyroid. I did however supplement on melatonin throughout the summer and that helped me sleep a bit, felt better over this time, then after 6 weeks went downhill again.
I also take the contraceptive pill and have done for years...could this be contributing? Also my thyroid is edging on overactive but always has been

Please see the diagram I've attached.

You need porgesterone to make cortisol. I personally would not take anything like the pill with adrenal fatigue. Adrenal fatigue means your body is low on minerals and vitamins etc. The pill actually uses up vitamin and mineral reserves. It's also halting your natural production of female hormones. And if you look at the diagram you need your progesterone to make cortisol.

I have seen many people benefit from taking supplements for adrenal fatigue. AND many who haven't. I'm sorry there's no easy answer. I think for me the big question is do you have adrenal fatigue? Or do you have ME?

Because the endocrine dysfunction is so much greater with ME I think most people with ME AND adrenal fatigue would say that they still have adrenal fatigue. From those I've spoken to, if you've been fatigued for a few months, did the cortisol test and had the results you had, then MAYBE you can improve with supplements. But this is just my experience.

IF you want to supplement look into 'true food' supplements.

Be careful of these adrenal designed supplements. Why? They contain lots of different things and if you react negatively you won't know what it is you're reacting negatively to.

1st steps: sort your diet out. Get tested for any food allergies. Genova does good testing. Some do well on Paleo. It's up to you. Get a book called http://www.amazon.co.uk/Metabolic-T...5491840&sr=8-1&keywords=metabolic+typing+diet

This has a self test in it. Paleo tends to be too low carb in my opinion and with thyroid issues this is not always good. Trial and error will tell you how much carb your body needs. Think seriously about giving up gluten and dairy.

Look into gut issues. Again Genova does testing. Leaky gut is common for a fair few of us. IF you have gut issues I would stay focused on diet and food allergies rather than supplementation.

I would say that while you're on the pill and endo won't be able to test your LH/FSH or progesterone to give you helpful advice. I know the pill feels beneficial for a lot of us so it's a hard decision. Please research this. Look into people like Chris Kresser, Dr. Lauren Noel, Dr. Lam www.drlam.com/articles/adrenal_fatigue.asp for more info on this and of course google it. Something like pill nutrient deficiencies

Get a hold of http://www.amazon.co.uk/Adrenal-Fat...id=1385492153&sr=8-1&keywords=adrenal+fatigue

I do not agree with his supplement mixes but his info and advice is a good starting point. Unfortunately with the state of the NHS you need to do a lot of learning yourself. It took me 1 year to learn enough about adrenal fatigue.

I personally would sort diet out. Take good quality salt - celtic sea salt, something natural or organic and unrefined. Then get gut issues treated - you'll need a nutritional therapist type person to help you with that. But again I wouldn't do whatever they say - use them to educate yourself and then research whatever they say to see if you agree with it. It's your body and your healing journey. Nobody knows you like you do!

If and when you start supplements I would take 1 at a time for a few days to see if you have any strange symptoms with them.

Good Luck
 

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Ema

Senior Member
Messages
4,729
Location
Midwest USA
I think for me the big question is do you have adrenal fatigue? Or do you have ME?

Or does she have Addison's disease, or some other neuroendocrine dysfunction given the pineal gland cyst?

These potentially very serious conditions must be ruled out in my opinion before talking about vitamins.

I do agree that the Pill is hardly ever a good choice for women experiencing hormonal difficulties due to the synthetic hormones at unnatural levels.

Ema
 
Messages
15
Location
UK
ok thanks - I already see a nutritionalist at the clinic I go to. she has sorted my diet and i have been on a host of supplements for over 6 months now. I eat gluten and dairy free where possible. I am underweight and eat a lot of protein to help this.
Take Magnesium / B Complex/ Zinc / Vit C/ CoEnzyme 10/ Olive Leaf / Fish Oils and Eve Primrose Oil
D- Ribose when I need it and also Protein powder
- was taking vitamin D my levels became abnormally high so stopped this.

None of my vitamins show low in the blood tests, my calcium was high and B12. I also take a pro biotic

Im not sure I have M.E. I do have many of the symptoms, but then fibro has these symptoms also. I can still work a few days a week and look after 2 children, if i get a sleep. Its tough and not easy, i do tire easy and feel fatigued everyday. Have some sort of pain everyday. If i dont sleep well, then im bedbound for the day. I feel crushing fatigue and find it hard to breathe...my heart rate is also racing and ive been put on beta blockers for this...Im also on amitriptyline and gabapentin for pains, but nothing helps my sleep...I have taken a benzo, melatonin, nurofen all in one night and STILL only got 4 hours. Then another night I will get 7-8 hours but will be broken. Since all this started 11 months ago I have had 1 night where I have slept through.
I can't nap - my brain just wont shut down. I desparately want a sleep study, but can't find NHS one in UK. Im wondering if I have some sort of sleep disorder. Though i know its common in fibro and M.E

iM going to stop the pill, I have been thinking of this for a while. Just to see if it makes a difference at least
 
Messages
15
Location
UK
i was told by doctor and neuro that these type of cysts are common? found in nearly half of all autopsy reports - which tells me they aren't commonly symptomatic because otherwise more would be found? I also know two other people with them and fibromyalgia. I also think the main symptom would be headache? I dont get any type of headache
 

barbc56

Senior Member
Messages
3,657
Multiple people called "BS" on the claims made in the 2nd link, and the author basically admitted that they were over-stating things for dramatic effect. In comment 17 they acknowledge that cortisol can be accurately measured in saliva. There are also published papers supporting the accuracy of salivary cortisol.

I'm pretty sure we've had this conversation before.

We probably have had this conversation before, I just don't remember, LOL!!

I found both my sources credible. Yes, even the insurance companies not because I have an abundance of faith in them but I think that what isn't covered can sometimes be a barometer of the scientific evidence. That doesn't mean you need to think the sources are valid and you know what? That's okay. I'm not trying to change people's minds but just provide information.

Just because someone says another opinion in the comments may or may not have anything to do with the validity of an article. but will go look at them again.

The papers I have looked at supporting the saliva tests seemed to have some methodological issues I The ones I did look at had some methodological issues, not that other studies don't and often seemed to start out with a hypothesis and then looking for evidence proving what they originally were looking for. The scientific method which I consider the gold standard, actually uses the opposite and tries to disprove the original hypothesis to show it is valid.

I will probably review some of these tests to refresh my memory.

Take care.:)
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
@Plum thanks for the diagram!

I dont fully understand the pathways - the diagram shows cortisol coming directly from pregnenolone and then onto progesterone then cortisol. The DHEA has a separate pathway - I thought DHEA was a precursor to cortisol as well.

I have to admit my knowledge is very limited on all of this, but I want to learn as I have normal rising cortisol, but then it dive bombs at midday and then stay below normal for the rest of the day. My DHEA was very low on both samples.

Now I have been given HC cream and DHEA to take. However I have always had an oestrogen dominant make up - large breasts, large hips, fall pregnant just being in the same room as an attractive man and also always had bad PMT. My maternal aunt died at just 36 from breast cancer. Taking Agnes castus helped my pmt and some other symprtoms enormously and we know that this herb increases progesterone (or at least balances it with oestrogen) so looking at the diagram I presume it may also have increased my cortisol along the pathway?

To complicate matters I have high beta glucoronidase on stool test which means my body isn't metabolising and getting rid of hormones (most especially oestrogen) quickly enough and they will be able to build up in my system.

It may be better then in my case to try to increase progesterone again with herbs, rather than try the DHEA. Although of course I am deficient in it so could give it a try - but scared of the effects long term though.

The thinking with the lower dose HC cream is that it is absorbed slowly over the day, but if what EMA says is right then it will only serve to supress my own production - I have had this problem big time in th past when taking too high a dose of an inhaled steroid for years - it wiped out my immune system and I was terrified to leave the house as I caught something every time I did.

All such a nightmare to work out. I have had an ACTH stim test on NHS and all I got told was 'normal' would still be interesting to see what level I started at and by hpow much it went up. One thing that did happen with the test was that I felt incredibly calm and serene after the injection - physiologically calm - it was amazing. The next day I felt totally wiped out.

Good luck with it all Wackers!
 

Plum

Senior Member
Messages
512
Location
UK
@justy for those with low cortisol the body often shifts away from progesterone production. You can look up pregnenalone steal - this is where due to low cortisol your body uses all available pregnenalone to make cortisol. You can also see how important cholesterol is and how low fat diets negatively affect hormone production.

As far as oestrogen dominance (which is most women) - focus on xenoestrogens instead of trying to increase progesterone. Increase of progesterone is only really achieved with bioidentical progesterone replacement which from personal experience, I am not a fan of. However, agnus castus is a good balancer which works well for many but I do not know it's affect on actual blood levels.

Anything you put on your skin or in your body that is not organic and natural should be considered. Often over looked is water.

Also focusing on elimination and enough fibre to remove oestrogens is important along with good liver detox.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
i was told by doctor and neuro that these type of cysts are common? found in nearly half of all autopsy reports - which tells me they aren't commonly symptomatic because otherwise more would be found?
Not necessarily. The older you get, the more doctors ignore symptoms as "just old age".
 
Messages
65
This is an excellent thread. @Wackersjackers: I hope you find the support you need in the Birmingham area. I have had good experience of services in this area, although not for AI.

I don't wish to hijack this thread, but hoped to continue it because I've recently had my salivary cortisol results back and, whilst not flat lined in the profile, I could really do with some advice.

My results:

Cortisol
Sample 1 (7am) - 16.6 nmol/l (range: 12-22)
Sample 2 (12pm) - 6.6 (5-9)
Sample 3 (5pm) - 1.0 (3-7)
Sample 4 (10pm) - 0.6 (1-3)
Total - 24.8 (21-41)

DHEA
Sample 3 (5pm) - 0.37 (0.4-1.47)
Sample 4 (10pm) - 0.28 (0.4-1.47)

DHEA:cortisol ratio - 1.31 (2-6)

It's been suggested that a combination of ACE and pregnenolone might help. I wondered if anyone had any toughts on this?

I am male; in my thirties; mercury poisoned; candida; SIBO; ME/CFS for 7 years or so. I'm taking vit C, molybdenum, milk thistle, digestive enzymes. Building in candida treatment. I'll start chelation, b12, etc., in the future, once my adrenals are in a safer place!!

Thanks very much
Leon
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
@justy for those with low cortisol the body often shifts away from progesterone production. You can look up pregnenalone steal - this is where due to low cortisol your body uses all available pregnenalone to make cortisol. You can also see how important cholesterol is and how low fat diets negatively affect hormone production.

As far as oestrogen dominance (which is most women) - focus on xenoestrogens instead of trying to increase progesterone. Increase of progesterone is only really achieved with bioidentical progesterone replacement which from personal experience, I am not a fan of. However, agnus castus is a good balancer which works well for many but I do not know it's affect on actual blood levels.

Anything you put on your skin or in your body that is not organic and natural should be considered. Often over looked is water.

Also focusing on elimination and enough fibre to remove oestrogens is important along with good liver detox.

I am the opposite of what you had said. I had over the range DHEA, lowish cortisol and high progesterone plus insufficient estrogen. Because my adrenal symptoms were so severe I found I needed the equivalent of 25 mg hydrocortisone to help me to feel better and after 6 months I switched to 6 mg Prednisolone plus a tiny bit of h/c as a top up in the afternoons. That was 12 years ago and when tested a few years ago I still have over the range progesterone for a woman who is postmenopausal and my DHEA is now in range. Estrogen levels look perfect on the one pump of Estrogel I use each day.

So for me my body seems unable to create the cortisol from the progesterone pathway, instead it seems to stay there and it explains why I do well on low dose estrogen but adding progesterone is a disaster so I don't bother now and haven't for the past 3 years. My GP was horrified to think I wasn't taking much progesterone and ordered an internal ultrasound to check the endometrium. Turned out wonderfully well, it was only a tiny bit thicker than a woman of my age (65) who wasn't on any hormone treatment so goes to show we are all different and its better not to jump to conclusions or make statements as above because they might be incorrect. My GP thinks I use a small amount of progesterone about every 3 months but I don't because I just don't need it.

Pam