Hi all. After many years of a fatigue and being fobbed off by my gp I went to a naturopath and did a genova adrenal stress profile - Oct 14, it came back showing adrenal exhaustion with a daily total of 14.5 nmol. Since then I have been on adrenal glandulars, firstly Dr wilsons and now NAX. As advised I came off nutri thyroid and went on NDT (Thiroyd) and worked up to 2.5 grains as per previous naturopath advices.
Recently I had my first visit with Dr P after reading his book, he has advised to increase to 4 NAX per day and lower NDT to 2 grains as following his diagnostic tests he said the root issue is the Adrenals.
I also have been taking 4 drops of biomatrix dhea .
I have a feeling that I am going to end up needing cortisol and Dr P said he would write to my gp to request this if required when i re-visit in 4 to 6 weeks. I must admit I am a bit concerned to go on cortizone long term but I admit after all these years of fatigue, brain fog, aches, anxiety etc I'm willing to try just about anything.
Any one have similar issues, had any good results. I saw a product on line called Adrenal max support which appears to be a cortizone supplement and Im tempted to try this. Also not sure whether i should try pregnenolone ?
Any advices gratefully recieved..
Hogie
Edit 15.6.15 - have added my adrenal stress profile tested Oct 14.
I have other thyroid results etc to share if anyone is able to interpret / guide me.
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hogie82
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I had an adrenal test which showed low cortisol at three out of the 4 readings. ( was several years ago). I decided I couldn't hang about for the adrenal suppliments to start to work, so I bought myself some cortisone, got a dosing schedule from an adrenals forum, and took Cortisone until I felt ready to come off It. .. (. 2 years). It made a huge difference to how I felt and I would have no hesitation in doing it again if I needed to. I have been on thyroid medication for over 25 years.
The adrenals forum I used, now has a website and the information on there is good.
Pregnenalone is preferred by some doctors rather than dhea.... Here is a cut an paste bit from dr myhills website. I cannot get the link to work, so to read more you would need to do a search on dr Myhill and pregnenalone.
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Treatment
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.
Cholesterol is the raw material from which steroid hormones are made in the body. The next biochemical step is pregnenolone- this is the mother and grandmother of all steroid hormones. Starting off with pregnenolone means that all steroid hormones can be naturally synthesised in the correct physiological balance.
In theory this should greatly simplify the business of prescribing and monitoring hormones because the body can do its own natural balancing act. Please see Wikipedia entry on Pregnenolone
A physiological dose is pregnenolone 50mgs. It is better absorbed under the tongue. This works because sublingual doses bypass the liver - the so-called "first pass effect".
This advice applies equally to men as it does to women. If you are taking DHEA now or if a future Adrenal Stress Profile (ASP) result shows low levels of DHEA, my advice is that you should consider taking/swapping to pregnenolone. If you do the ASP test through my practice, then I will recommend pregnenolone if indicated by the results. In addition to CFS sufferers, post menopausal women and those aged over 50 may also benefit from this therapy. For those 'transferring' from DHEA to pregnenolone, the conversion rate is approximately 1:2, so that if you are currently taking 25 mg daily of DHEA then you should transfer to 50 mg daily of pregnenolone.
DHEA is easy. Low levels mean a deficiency and supplementation with pregnenolone is indicated. Sometimes I see a raised DHEA. This can occur in polycystic ovary disease in women and if there were symptoms suggestive of this (irregular periods, lower abdominal pain, infertility) then an ultrasound scan of the pelvis is indicated. High DHEA is a stress response and the causes of such needs looking for. I suspect the most common cause is metabolic syndrome and hypoglycaemia.
Cortisol is more awkward. Levels vary according to the short term level of stress and for how long that stress has been applied. Increasing cortisol production is the normal response to short term stress and is highly desirable, so long as the stress is removed and the adrenal glands can recover. On-going, unremitting stress means the adrenal gland and the whole body is in a constant state of alert, does not get time to recover and eventually packs up. Pregnenolone is upstream of cortisol so taking this should
So is your issue predominantly thyroid, which then effected your adrenals?
I believe I am the other way round so it may be harder for me to come off HC, or perhaps when given a rest and thyroid back working I may be able to.
Thank you for the info I will have a read into pregnenolone. I would like to explore all options before the HC but feel I am running out of time. I feel that i burned mine out after a serious amount of stress, feeling wired late at night and then early starts with serious amounts of stimulants to get me through the days.
Hi hogie, yep my issue was because I had thyroid problems for over 20 years which were poorly treated. Hence I always ran on adrenalin, stimulants and sheer bloody mindedness. I bought my own hc from t'internet... Its not illegal to import your own meds but we are not allowed to say where from on this forum. ( though we can pm each other)
My original cortisone results showed higher levels of cortisone than yours, on the 1st reading then the 2 nd, 3 rd and 4 th readings were a flat line at the bottom of the graph.
Hc will give the adrenals a rest and will make you feel much better... I weaned off them over a couple of years. The hardest one to stop was the 2.5 or. 5 mg dose I took last thing at night. I stopped it a couple of times but missed it.... So it took 2 years in total.
By the time my cortisone was stopped, I had changed thyroid meds to NDT, and have never looked back.
I had a dosing schedule of 20 mg a day but I used cortisone made by Douglas, so I upped it to 25 a day taken in a split dose. The adrenal forum is the place to get a schedule worked out.
Was interesting that I was a smoker for 26 years who never even contemplated stopping. But once the adrenals were sorted and I was no longer tired and wired, I just stopped smoking. Has been 5.5 years now.
I assume you mean prednisolone? I would definitely check this drug out and discuss with your health practitioner if there are other ways of treating the Adrenal problem without this drug.
Hi, no, I definitely don't mean prednisolone. I took cortisone. Much easier to control as its effects are fairly immediate and short lasted. Its not much liked by the medics because you have to multidose. Which is perfect for adrenals that are low at some points in the day.
No I meant pregnenolone. I have read that many prefer HC over prednisolone due to the shorter half life and able to control the circadian rhythm more naturally. My Aunt (addisons) was intially put on prednisolone but didnt get along with it and she was switched to HC and has now found her correct dose, which i believe is 15mg morn and 5mg at night. S Apart from one episode of stress and flu where she didn't increase she is in a good place.
Thanks Have you put any weight on? Or other side effects? Is there a natural way of dealing with adrenal problems or not, if you don't mind me asking, as I am hoping Levothyroxine will be the only drug I need!
I have pernicious anaemia, an auto immune disease causing vitamin B12 deficiency. As I understand it, this is in the same 'family' of auto immune diseases that cause thyroid issues (which I have had) and Addisons.
The symptoms you describe seem to me to be those of Vitamin B12 deficiency so I think you should have your B12 levels checked out and also do some research. See the Pernicious Anaemia Society, also part of this website. If it is B12 deficiency the sooner it is put right the better. The B12 injections I receive make me feel 100% ok.
I am on hc too, took some convincing. However before you start on hc you should insist on a test for addisons. As u have it in the family and you've had low cortisol saliva test it seems you are a candidate for it. I doubt very much that any GP will prescribe with out an endo, so you will end up self medicating and then you may find it very difficult to come off for a SST but being on hc will skew the results. Whilst many ppl do come of hc safely after time if you have failing adrenals you may well find yourself one of those ppl who can't and then you will find yourself in an impossible position regarding needing an NHS script but self medicating. I say this as someone who self medicated and last night had a big scare as I was suddenly very ill, in great pain and threw up. It looked like it could be an appendicitis and my partner and I were thinking hell if I have to have an emergency operation will they listen to the fact I am self medicating and dose me as if I am addisons or will they poo poo that, operate and my adrenals fail? So you see it is a tricky business.
Your GP sounds rubbish, change them. Take your stress results to a new one, tell them their is addisons in your family and insist they refer u to an endo for a short synthacthen test ( can't spell it google it) to rule out addisons. Many gps don't even know about it. They will poo poo your test results, so will the endo probably, but you have a right to insist they rule it out because if they don't and you have an addisons crisis they will be negligible. Tell them you doubt it will be addisons but you have to rule it out.
I know I don't have addisons I've had a SST and my cortisol blood is high it's just not bioavailability - I have m.e - so I knew my only choice was self medicating but you need to get it ruled out before risking being stuck on hc for the rest of your life with an NHS who won't recognise the fact. Then when your test comes back negative u can happily self medicate. I know you want to feel better ASAP but trust me this is the path to go down. See if there are n e endo's on Louise's list you can ask to be referred to if in England. Whereabouts are you? Ps I blood cortisol may be offered bŷ the GP, it's no indicator of addisons insist on an endo appointment. Let us know how you get on and good luck.
I should have said - I have been pretty much fobbed off by the endo too. They did standard 9am cortisol and antibodies and thyroid t3, t4, antibodies, but they would not do a SS Test, as once they got the above results said it wasn't pointing towards any adrenal issues and they sent me packing with a diagnosis of chronic fatigue and said I should go on SSRI/ flouxotine, not very helpful! I refused the anti-d and said I am only depressed due to the lack of energy, low libido, brain fog, muscle pain, etc. i.e I am sure it is not the root cause but a symptom of adrenal issues.
They also said my testosterone and gonadatrophins were in range also but they appear to be in the lower end, so i'm a bit concerned about that what with the low libido.
I have seen practically every gp at the surgery I go to. The latest one told me I should be more open minded in my approach to recovery! I retorted that I have been extremely open minded, having CBT, accupuncture, excellent nutrition etc and that perhaps she should be more open minded and holistic rather than trying to fob me off with anti-d's!
Anyway they finally agreed due to family history to monitor thyroid and blood cortisol.
I actually received a message from the surgery today and she seemed keen to discuss my latest results. I have a feeling that the result is going to have changed in respect of the ndt I have been taking (which i am lowering following dr P's advice as to prevent the thyroid turning toxic as I may be unable to use it with the adrenal issues). Either that or the cortisol is going to be all over the place, as the last week I have had family issues, split with girlfriend and had to move out!
I completely understand you view with regards to getting diagnosed properly. The issue I have is that I am not sure i am at addisonian levels yet. I have some hair loss on my legs and am able to struggle through each day, no doubt due to the help of the NAX, but I certainly have no quality of life.
I would certainly not take the thought of taking HC so seriously if this all hadn't had such a detrimental effect on my life for the last 3-4 years.
I completely understand why you have got to that point. I hit the m.e wall four years ago having been hypothyroid since 1994 - I spend 50% of my day in bed, and can hardly every go out, my daughter who is nine has forgotten what I was like when I wasn't in bed or telling her I can't do things.
If you decide to use HC I can pm you where I get mine, it is very cheap but takes a week or so to arrive.
ps out of interest what was your blood cortisol result? Mine was 709, and my saliva was all below range, pointing to my cortisol being bound rather than not made, so inaccessible. Where are you in the country? Apparently the only endo who knows how to properly intepret a SST is in Birmingham. You have a right to a second opinion if you are anywhere near there.
The endo I saw responded to my first saliva test, nearly 4 years ago, with 'that's not how we measure it'. I am more educated in all this now and when i see one next week I am taking the paper that proves that saliva tests are valid and relevant!
I've been reading this string with a great deal of interest, but what has really made me sit up and notice is your reference to a 'paper' which proves that saliva tests are valid and relevant. Where is this paper and how can I get hold of it? I've tried 3 gps in the same practice, none of whom were interested in my saliva test. I have an appointment on 30 June and would so like to take my test and this paper with me!
what this paper does is establish the cost effectiveness of using saliva over blood, by implication it proves that saliva is a 'sound analytical method for evaluating free serum cortisol'
named: Cortisol-binding globulin is important in the interpretation of dynamic tests of the hypothalamic--pituitary--adrenal axis.
This is relevant as it shows how a high blood cortisol test can still mean a person has low bio available cortisol if the saliva test shows low accessible cortisol. By implication is shows that if you have high or normal blood cortisol and low saliva cortisol that the body is for some unknown reason not being released from its binding. Hope that helps
I think I get it, though I will have to re-read! In your last sentence where you say 'the body is for some unknown reason not being released from its binding' do you mean the cortisol is not being released from its binding?
The research I can't find, but saw referenced somewhere and now can't remember where, is a paper that concluded that taking physiological doses of hc only lead to adrenal failure in a small percentage of patients, perhaps determined more by where their adrenals were headed anyway rathe than the replacing of their function with hc. If anyone can find that before next Tuesday I'll be happy.
There is evidence that blood cortisol is not a substitute for SST because it SST measure how the adrenals respond to stress, can they adequately, rather than can they produce a baseline of cortisol.
Like I said before if u r in England, see if you can find a decent endo and insist on being referred to them, def don't go back to the previous one you saw!
My first blood cortisol (July 2014) was 208 and second (Oct 14) was 534 which was right at the upper end of the range they have for early morning (171 - 536) ?! This is why they said a SST wasn't necessary.
I am due to get the latest blood cortisol tomorrow when i phone my doctors. I am in the south east - Essex and the last endo I saw was at Basildon Essex. I am interested to see what the gp says about my latest results. It could be that the ndt or nax is having an effect on my results ( i didn't take any for at least 12 hours before, but perhaps should have gone longer) which is why they sounded keen to speak, or maybe the epstein barr/ viral antibodies test i asked for has come up with something.
But your first blood cortisol was so low, of course they should have done a SST. If you've been on NDT your TSH is probably near zero and that's what they want to talk about. Ignore them, it's what happens when you take t3. They may be a half decent endo in Ipswich, I'm sure I saw that somewhere recently, can't think where. I used to live in North Suffolk - sadly (NHS wise) I live in Wales now which is like the 1970's! If I were you I get onto an addison's group and ask for some advice about your cortisol and how to handle it! Do let me know how things go.
arghhh frustration breath breath lol.... ok ....so i just had the call from the gp, as expected tsh is 0.01 and T4 is 22.3. She started lecturing me about self medicating etc. Said normally these are ranges where they would prescribe treatment for being hyper, i said I am certainly not hyper!
My blood cortisol was 354.
She said cortisol is fine and is a completely reliable test for addisons. Judging by how she talks to me ignoring all symptoms etc i have zero chance of getting a referral from her. I said I need a SST to rule our addisons and she wasn't having it.
I am going to have to have an addisonian crisis before any gp takes any notice. Looks like self medication is on the cards. Certainly looking into getting a new gp now. The surgery I go to is a shambles.
Did they test your T3? Change GP's go to the new one immediately before your records come through, gather some information about the SST v cortisol blood, find some evidence that the SST is not about baseline cortisol but about whether your adrenals can make cortisol under stress, when required to, and present that with the name of the endo you want to see. If they won't refer go down the formal complaints route. They won't like. You could even just do that now with your current GP, then when you've alienated them but they've been forced to refer you to an endo for fear of being sued for negligence you can then find a new GP surgery. Write a formal letter of complaint, quote and attach evidence about the test for Addisons and start the compliants procedure. How much ndt are you are on?
Yes with my SST I now know that because my baseline was 500 it didn't matter what happened as far as that endo was concerned although my cortisol did not go up as it should. That is the problem which is why we end up self medicating. 22 is the top of some normal ranges so she stalk crap when she says ur t4 is so high if u weren't on meds they'd be treating u for graves! With out the t3 u don't really know the whole picture, perhaps ur not converting and the t4 is pooling? Do as much research as poss backed up with med papers and challenge challenge challenge.
Hi Sandy, I'm not sure if Dr P regards adrenal as primary for everyone, but he did in my case, after checking thyroid reflexes and doing other diagnostic tests. My thyroid results have always been in "range" although with relatively elevated tsh (3.15) , however since taking the ndt the tsh is 0.01 and T4 high. However i assume that if i was thyroid resistant my bloods would not determine whether my body is using the hormone?
(I need to get the t3 result to check if i am converting, but constantly up against a battle with my gp, who wants to dismiss me with CFS and anti-d)
Taking into account I have got my temperature up and improved thyroid scores and not feeling better, would this not point to adrenals, especially taking into account my adrenal stress profile test? Although alot of the symptoms are shared, mine have typically pointed more towards the adrenals. Also my Aunt advised that once her adrenals were sorted her thyroid soon rectified itself.
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Have you put any weight on? Or other side effects? Is there a natural way of dealing with adrenal problems or not, if you don't mind me asking, as I am hoping Levothyroxine will be the only drug I need!
Informative manual - treating adrenal exhaustion (arguably the precursor of thyroid issues for many of us)
Nutri Adrendal
How Can I Improve Hypo Symptoms without Causing Arrhythmia and Results of Thyroid and Adrenal Tests
Feeling worse on Nature Throid
