I just got my test results back from Genova Diagnostics. I have to say they came as a complete surprise to me as I was convinced I had adrenal fatigue.
I realise they are all out of range, but wonder how common this is in a person who 1. has been diagnosed with adrenal fatigue in the past and treated with Medrol 4 mg daily and 2. was treated with high doses of prednisolone (starting with 1000 mg IV for five days followed by 100 mg pills for a week, decreasing slowly over a six week period) for autoimmune encephalitis in September 2018?
Results (saliva collected on Nov 27):
7 am: 11.12 nmol/L (ref 2.68-9.30)
noon: 3.59 nmol/L (ref 0.75-2.93)
5 pm: 4.83 nmol/L (0.36-1.88)
11 pm: 1.21 (<0.94)
DHEA 0.56 nmol/L (ref 0.25-2.22)
DHEA/cortisol ratio: 0.05 (ref 0.05-0.32)
The most bothersome symptoms in the past year have been: massive weight gain (+27 kgs/60 lbs in less than four months), pre-diabetes currently treated with Victoza, fluid retention, high blood pressure (treated with perindopril), nervousness, trouble winding down and falling asleep at night, disturbed sleep, terrible sugar cravings, feeling overmedicated on a lower dose of NDT than I used to take while displaying hypo symptoms such as weight gain, hypertension, fluid retention, and dry, itchy skin.
The most important question now is: where to go from here???
I know there are supplements that can be used to lower cortisol; PS, relora, ashwagandha, holy basil come to mind. But is one more effective than the others, or are prescription drugs necessary?
I guess a person cannot go from adrenal fatigue to Cushing's syndrome?!
You most certainly can go from "adrenal fatigue" (which isn't a recognised medical condition - either your adrenal glands are working or they are not) to Cushing's syndrome & with the amount of Prednisilone you were given I'm not at all surprised that you have Cushing's syndrome!!! That was an incredibly high dose you were given, putting it into context Prednisilone 100mgs is equivalent to 400mgs of Hydrocortisone. I have adrenal insufficiency following Cushing's disease caused by a pituitary tumour, my therapeutic dose of Hydrocortisone is 30mgs a day which is about 3.75mgs of Prednisilone. You need to see your GP to ask for testing to see if the tests correspond with the Medichecks ones, if they do you should be referred to an Endocrinologist. Please don't try & rectify it yourself until you have had testing with your doctor.
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I appreciate your input, but my GP is clueless about most things so wouldn't be much help. I'm even afraid an endo would be counterproductive since they don't understand why anyone with thyroid disease would take anything but T4 and can do well on a suppressed TSH...unless I could find an endo very knowledgeable about adrenals, I'm not sure that would be of much help. I speak from experience as most endos are clueless when it comes to the treatment of hypothyroidism and refuse to acknowledge levo only is not right for everyone.
Autoimmune encephalitis is a inflammation of the brain, so requires high doses of steroids. I understand high doses of prednisolone given IV initially, followed by pills for another few weeks, are the standard treatment in those cases.
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I'm glad to say that there are Endo's who do understand pituitary/adrenal issues but you need to find your nearest Centre of Excellence; there are also ones that do offer T3 if it's justified. Fortunately I'm not talking out the top of my head as I am admin for a group for people with Cushing's so have a lot of experience, I also work with one of the leading Endo's in the country, as well as the Pituitary Foundation to improve the service for those of us with pituitary/adrenal issues.
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I don't doubt your knowledge or expertise, but there are cases when high doses of steroids are necessary. In my case, the symptoms caused by the autoimmune encephalitis were misdiagnosed for a couple of years as epilepsy, and I was put on no less than four anti-epileptic drugs (despite normal EEGs and CAT scans) with horrible side effects, including hallucinations. I ended up on invalidity pension because of what neurologists finally decided was "therapy-resistant epilepsy of unknown origin"...after no drug helped and they could not detect any epileptic activity on EEGs nor brain damage on CAT scans.
It wasn't until I was referred to a neurology professor at a university clinic that a PET scan was ordered and showed a swelling of the left temporal lobe. A spinal fluid tap was also ordered and showed elevated antibodies that you see in autoimmune encephalitis. The prednisolone treatment saved my life in that it removed all neurological symptoms, and I have been able to stop all the horrible anti-epileptic drugs that ruined my life and career before I even turned 50. I have now been declared fit to work again, after over a year with no neurological symptoms. The neurologists have finally accepted the idea that I never had epilepsy to begin with.
So it's not all black and white.
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I have to admit I was quite shocked when I read this post by an alledged adrenal expert and moderator working with endocrinologists, yet who seems unaware of the difference between physiological and therapeutic doses of steroids...I hope the doctor you are working with does...!
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I'm not saying the treatment was wrong & certainly life saving but it is probably the reason why Cat68 now has Cushing's syndrome due to the steroids.
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When you say that adrenal fatigue is not a recognised medical diagnosis, are you then suggesting that doctors such as Dr. Durrand-Peatfield, Dr. Hertoghe in Belgium, and the many alternative practitioners in the US treating adrenal fatigue (either with glandulars or prescription meds or both) are wrong?
I get the impression that people are piling on to criticise what Hidden has said just because they didn't like her answers. But she's right!
Adrenal fatigue has never been an acceptable mainstream diagnosis in the UK. I think it exists - if cortisol levels are very low in range but still in range then people often need help of various kinds to get the adrenals working well again. But that doesn't change the fact that mainstream doctors don't accept adrenal fatigue as being real - they think it exists only in the realms of "alternative" medicine not in the realms of "real" medicine.
And I think there is no doubt that someone given lots of steroids for the treatment of a medical condition could end up with another condition related to dysfunction of the Hypothalamus-Pituitary-Thyroid (HPT) or Hypothalamus-Pituitary-Adrenal (HPA) systems.
Dr Durrant-Peatfield hasn't been licenced as a doctor for many years. That doesn't mean that he is right or wrong - it just means that his ideas don't align with mainstream medical practice.
Dr Hertoghe is considered to be "a bit of a quack" by UK medicine. A few years ago there was a UK woman called Mary Kidson who took her daughter to see Dr Hertoghe, and the doctor prescribed various hormones for the girl. The UK medical fraternity had declared the daughter to be perfectly healthy and refused to treat her. The mother actually ended up being charged with poisoning her daughter as a result (the case was dismissed, but only after the prosecution case had been aired in court). So Dr Hertoghe's reputation amongst patients counted for nothing in that case.
I see what you mean, and apologise if I sounded offensive; that was not my intention.
I know adrenal fatigue is not a recognised/official diagnosis in the medical community, much like subclinical hypothyroidism is not recognised or treated by most conventional doctors.
I don't know much about Dr. Peatfield; I just read his book a few years ago and liked it.
I know a little more about the Hertoghe doctors after seeing one myself for the past eight years.
I am not sure what to think...on the one hand, I like the fact that they will treat exhausted adrenals because I honestly believe that the adrenal glands can be affected by long-term hypothyroidism.
On the other hand, I am not sure if, given the choice today, I would have gone on Medrol back in 2011...knowing what I know now, I think I would have tried various supplements and adaptogens rather than an adrenal-suppressive prescription drug that you would normally expect to see someone with Addison's disease take.
Because, to be honest, even after weaning myself off Medrol, even at physiological doses, I have never been the same. The high doses of prednisolone I was given last year would perhaps not have been problematic had I not taken Medrol for three years already; it seems that, with healthy adrenals, high doses of pred knock them out, but they are able to recover once you wean off the steroids. That did not happen to me, and I cannot help but wonder if taking Medrol at physiological doses for three years prior had something to do with that...I guess I'll never know. But I do realise now that even "physiological" doses of cortisol can have serious side effects if used long-term. Unlike adaptogens, I cannot see how prescription drugs such as HC, Medrol, or pred will nourish our adrenals back to health, rather than knock them out.
The Hertoghe doctors are (to my knowledge) GPs who specialise in "anti-aging medicine" which is not a recognised speciality in most countries. It's legal in Belgium along with drugs such as NDT, DHEA, and HGH which many of their patients have to buy there because they are prohibited in their country of origin. When you read articles written by Dr. Hertoghe himself, they are mainly about how to look youthful in your 70s and beyond, using DHEA, pregnenolone, and human growth hormone. Many of the Hertoghe doctors, including mine, are hypothyroid themselves and take NDT along with other hormones. However, they don't seem to recognise that some patients need T3 only, and that some simply won't recover on NDT because it contains the wrong T3/T4 ratio for them.
As I said, I am no longer convinced every hormonal imbalance needs to be corrected with prescription drugs such as pred or Medrol; at least I wish I had known back then what I know now...
I guess a person cannot go from adrenal fatigue to Cushing's syndrome?!
I would have thought this was possible - but I don't have any medical training, so take my opinions with a pinch of salt.
You could develop a tumour on your pituitary gland which produces ACTH, which then causes an excessive release of cortisol from the adrenal glands. ACTH-producing tumours can develop elsewhere in the body too. There could also be a tumour in your adrenal gland(s).
Neither of the two links above tell you whether the drugs and supplements referred to raise cortisol or lower it, so you will have to research any that are relevant to you, to find out what they do to cortisol.
I know there are supplements that can be used to lower cortisol; PS, relora, ashwagandha, holy basil come to mind. But is one more effective than the others, or are prescription drugs necessary?
There is a supplement called Seriphos, made by a company called Interplexus, which contains Phosphorylated Serine - similar to PS but not exactly the same, and when I tried it it was cheaper than PS - but that was years ago. I don't know which of the following two links is the "official" website for Seriphos.
You may find references online to Seriphos being re-formulated. As far as I can tell that turned out to be a catastrophic business decision and they changed it back again fairly quickly. Just be careful what you buy, if this particular supplement interests you.
Another source of information is the Henry Lindner site, which is usually worth reading on anything to do with hormones. However, he doesn't appear to have a lot of info on Cushing's, and he has no search facility on his site. I found what there was available by doing this search in Google :
Of the supplements mentioned in your post and mine... I've tried a few of them :
Seriphos : It did appear to reduce cortisol at bedtime, and reduce my insomnia for a very short time. But once I stopped taking it the effect wore off extremely quickly. While I was taking it I felt absolutely terrible (like I had flu), but lots of people swear by it.
Relora - Never tried it
Ashwaghanda - Made me nauseous, but very popular with others
Holy Basil - This works for me without side effects, but for many people it apparently does nothing. I was taking this product, which I usually buy from HealthMonthly :
The recommended dose is 2 capsules per day. I took more than that and have slowly reduced my dose over time. I was taking it for at least two years I think. I only very recently came off it altogether, and so far am doing reasonably well. Earlier attempts to come off it gave me the jitters, making me think my cortisol was still high. But now - finally - I've come off it with no problems at all, so I don't think the product is addictive.
I've just seen that Hidden has answered your post and suggests that you shouldn't try and fix your problems yourself. I definitely think you should ignore my post, and pay attention to Pauline because she knows a lot more about adrenals than I do.
According to the info on Dr. Myhill's site (linked to in other posts), I'm currently here:
". High levels of cortisol and low levels of DHEA.
The body cannot make enough DHEA to balance cortisol. This is the first sign of adrenal exhaustion. This is a normal response to chronic stress as the adrenal gland switches from DHEA production to cortisol production instead. However the patient needs a long break from whatever that chronic stress may be: insomnia; mental; physical or emotional overload; poor diet; or whatever. Failure to correct leads to exhaustion. I used to treat DHEA deficiency with DHEA. However, I believe pregnenolone is more physiological because it is upstream of all adrenal hormones including progesterone and cortisol but it must be part of a package of recovery without which worsening can be expected."
Does anyone have experience more specifically with the use of DHEA vs pregnenolone? From what is said here, pregnenolone can be converted to cortisol as well as DHEA, and that is the last thing I want.
I doubt you will get many responses involving people living in the UK taking DHEA. It used to be available as an OTC supplement, but has now been banned. DHEA is classified here as an anabolic steroid, and all such drugs are banned.
TBH, I am not sure this is Cushing's requiring consulting an endo, but probably slight overproduction caused by steroid treatment and stress. From what I've been able to gather, in these cases, it's a reversible condition as long as you identify the stressor. This is also mentioned in my report from Genova Diagnostics and the suggested treatment is to go off the steroids (which I've already done) and try to reduce any unnecessary stress (granted, easier said than done).
However, one thing makes me wonder: I've been seeing this doctor since 2011. She's trained by Thierry Hertoghe in Belgium, prescribes NDT, treats adrenal fatigue, and prescribes other bio-identical hormones. She had me on Medrol for a couple of years after diagnosing me with adrenal fatigue based on a 24 h urine analysis. When I saw her a couple of months ago, she said my DHEA levels were suppressed and that that had been caused by the massive steroid treatment in late 2018. So she prescribed DHEA 20 mg daily, but also recommended I go back on Medrol and take up to 8 mg daily which would still be a physiological dose...without even measuring my cortisol levels...! That was the reason I decided to order a saliva test before taking more hormones. I'm really glad I did not go back on Medrol.
But, given that all four saliva samples showed out of range cortisol levels, I seriously wonder if this doctor is worth 200€ consultation fee + another 400€ for labs (of which only a fraction is covered by health insurance)???
As discussed in PM's, you and I have the same doctor.
TBH, I am beginning to wonder if the so called Hertoghe doctors are overrated. It sounds so impressive that they prescribe NDT and other bio-identical hormones, and use 24 h urine analyses to diagnose hormone imbalances rather than blood.
BUT:
They also charge a fortune for a consult, and labs are also very expensive and many not covered by health insurance.
I am seriously beginning to wonder if it's worth it?!
This doctor also put me on Medrol for adrenal fatigue in 2015 and has since renewed my prescription every year although I weaned myself off it after a couple of years (no particular reason, I just felt uncomfortable taking it continuously and was afraid of long-term side effects). . She put me on 4 mg daily which I understand is a full replacement dose for Addison's disease, but said going up to 6 mg daily if I was under stress would not be a problem at all. She does not seem to consider adrenal fatigue a reversible condition which surprises me as most doctors treating it seem to (I am particularly thinking of Dr. Durrand-Peatfield).
I originally consulted this doctor to get NDT, but prefer Thyroid-S to Armour and Erfa (the only brands available in Belgium, costing a fortune and not working that great).
All other drugs she's prescribed - Estrogel, progesterone, DHEA - can be obtained online as well.
I find this doctor a bit sloppy - after the initial 24 urine analysis she has never ordered this test again, nor has she measured my cortisol levels to see if I need to stay on Medrol. I have to admit I find that a bit irresponsible.
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