I recently had serum, saliva and urine tests to confirm an elevated cortisol diurnal. My ACTH has been elevated for the past 6 months and it has thrown me off w/thyroid meds (Synthroid). I was on 75, then on 50, now on 62.5 consistently for 8+ weeks.
I really don't know what's happening with the ACTH. I've been given an order for a pituitary MRI (no contrast) to see if something is wrong with it, like a pit tumor.
I had sub-clinical Cushing's in the past but it was due to an adrenal adenoma vs the pituitary. Had the one adrenal gland removed. The remaining one remained sluggish so I supplemented Cortef 7.5 everyday since Dx w/Hashimoto's (shortly after surgery). Been that way for about 7 years, and since this episode began in March this year, I had to wean off Cortef and since then I've had very hard time taking Levo even though my cortisol is high.
I remember after the surgery it was such a relief and I was beginning to feel normal again, then 3 months later I was Dx w/Hashimoto's. The doc was weaning me off Cortef but I couldn't handle it once I had started T4 50mcg. I mainly felt dizzy so kept me on the Cortef. I felt sluggish for a long time until I left him (JohnsHopkins, mind you) (typical endo mentality labs only, forget how you feel) and found an integrative doctor and she upped my Levo to 75 and kept me on the Cortef. I finally began feeling better. This went on for years feeling normal. Suddenly this year out of the blue, things began to unravel.
I could not take my medication w/o getting dizzy and feeling off. If this happened, in the past, my doc told me to up my Cortef 2.5. Usually worked and only had to do that for less than a week. So I tried that but to no avail. The doc left and a nurse practitioner took her place. She got labs done and found my ACTH elevated and cortisol high normal. I had to cut back. This was back in March and now I'm off Cortef completely and I have not felt well at all this whole time. I've been taken off levo a couple times and put back on 25/50 and now 62.5. But I can't handle it. It brings me right back to when I was first Dx'd w/Hashimotos and couldn't take Levo w/o Cortef, yet now I'm high normal cortisol, and it's all because of the constant elevation of ACTH.
In the past couple months I've had blood/saliva/urine (DUTCH) test and they all reveal elevated cortisol (with a normal pattern) but they also all reveal a very low DHEA. I have habitually measured low on DHEA for +/-20 years. Always blamed on aging. I'm 56 now. One saliva in 2018 showed <6. A number the doc said she had never seen before. So I supplemented 5mg DHEA. Didn't really help much, because I felt fine and noticed no change. But here I am today with all these tests showing a pattern of a Cortisol/DHEA ratio that is low and all say this is a bad combination.
The DUTCH urine was very revealing. First time I've had that test and the information is more comprehensive than saliva. All sex hormones are low range, glutathione low, melatonin low normal, dopamine low, Cortisol high/Cortisone normal, DHEA low. In this 6 month period, I've lost weight, lost my appetite, nauseous, dizzy, weak, and jittery (never had these jitters before). I have to force myself to eat to maintain 95lbs. My skin is sagging everywhere, like wrinkled and I'm aging before my eyes. I've asked the NP if I should take DHEA a couple months ago, she said no, not now, wait for DUTCH. My iron had dropped to 70 and I asked her if should supplement iron, she said no, but then the next blood test it was 50, so I told her I am going to supplement iron. She's not as dynamic as the prior doctor was. Plus the business seems to have dwindled, so I feel I need to take some matters into my own hands, as I know there's no endo out there who is any good, none that I have ever found.
So my question is this, in regards to DHEA. Does anyone have experience in taking it? It's not mentioned very much in thyroid articles/websites like Cortisol is. Why is that? So not sure how DHEA fits in, and quite frankly never really thought of it because I hardly read about it/hear about it. Does anyone know anything about the Cortisol/DHEA ratio being low? Like symptoms etc. Commentary on Saliva/Urine do say it's a bad combination and I wonder if it has anything to do with why I cannot tolerate thyroid meds.
I've been told I should switch to T3 only yet I've never been able to handle a speck of dust of the stuff. I tried 2.5 a month ago. The first 5 minutes was glorious, my mind cleared, then my heart started racing for about 30 minutes and as it stopped doing that I felt the biggest crash in wellness and I was out of it the rest of the day in misery. I don't understand any of this. But I've been told privately that I don't handle T4 well and my labs show I don't convert well and I should just trudge through dropping it completely and go T3 only. That it's entirely different than Levo and it will also help adrenal problems. The DUTCH said low DHEA can be caused by hypothyroidism. But I do not know how to get passed what T3 does to me. It's like I can't handle any thyroid medications. So I wonder how I got along so well on 75Levo/7.5 Cortef all these years. It's gotta be adrenal related.
Could it all be due the very low DHEA? Appreciate any input. Thank you and sorry for the long post!
radd
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it's a quandary as to how I fell into this situation health wise but I'm in it and it's quite miserable. The adrenals have a way of truly messing us up.
I actually tried 5mg this morning after I posted. I just thought, why not try. Mistake. Made me feel awful, and I still do. Caused more dizziness and fatigue. I've never had normal DHEA, always on the low side. I've taken it in the past and it didn't really seem to do much, I noticed nothing really, but this time, um.....no. I feel the consequence. Seems my body is in a very sensitive state. Every thing effects me negatively and I don't understand it.
If I didn't have to take thyroid meds, Levo, I wouldn't feel so bad, but can't go more than a couple days w/o before I start feeling really sluggish.
Thank you for reaching out : ) I hope your trial helps. Although 50 is a lot. Best to start low. Most women start with 5-15.
As DHEA is a Controlled Drug in the UK, it is illegal to import it.
For that reason, any posts which identify possible sources, any posts which are from UK members saying that they have bought some from abroad, etc., will be deleted.
It is technically possible for it to be prescribed in the UK but very rare.
(The UK has some legal oddities - vast numbers of things can be prescribed but might not be eligible to be funded, etc. And we have lists of things that cannot be prescribed, or only under very tight controls.)
How do I obtain DHEA?In the UK all forms of DHEA are prescription-only medicines, and are only available from a pharmacy when you have been given a prescription by your doctor.
DHEA is classed as an "unlicensed" medicine in the UK. It can be supplied by a pharmacy when you have a valid prescription, but the doctor and the pharmacy have a greater responsibility for the safety of the medicine. pharmacy2u.co.uk/dhea.html
In my book, that is grossly irresponsible of them. It isn't like me saying something from a supermarket is nice, why not try it. It is their professional duty to know everything relevant about things before they give advice.
Yes it is and if they think i need it then surely they should prescribe it for me. My Endo is going to do a CRH test now so i will see what the results are and go from there.
debsmitch60, Don't want to alarm you too much, but it's important to understand what you're planning to take. This well known US clinic warns strongly against using DHEA, despite the fact it's not a controlled drug there. mayoclinic.org/drugs-supple...
If your endos think you need it, then they should prescribe it and take responsibility for their advice. DHEA is a powerful hormone, not a relatively harmless vitamin supplement
Thank-you RedApple i thought it was in the same league as estrogen and progesterone but i can't think straight. I won't take it, i just feel desperate but you are right, they should prescribe it to me. Thank-you for your advice and link x
Yes that's my Nhs Endo and a private Endo. It is ridiculous that it's a controlled drug and especially when you can buy medication like T3. It's so odd.
I don’t know if I can tell you more than you already know as you appear to have investigated the areas surrounding your adrenal troubles but I’ll follow on from a previous post that you referred to ...
As previously advised both cortisol & DHEA (but not DHEAS) should be following a circadian rhythm, as should ACTH. Low DHEA by its very nature will result in elevated cortisol levels but when levels are genuinely high/low in comparison to accepted ranges, it can be an indication of the first stage of adrenal fatigue. However, your elevated ACTH appears to be driven by some other cause but at least the elevated cortisol levels prove your one adrenal gland is working sufficiently (thank goodness 😊).
Dr Peatfield states in his book Your Thyroid & How To Keep It Healthy ‘DHEA is needed at cellular level to ensure normal receptor uptake of thyroid hormone’. I was his patient for a while with struggling adrenals and he explained because DHEA sulphate is the most abundantly produced adrenals hormone, a low level is a good indicator of low adrenal reserve. He always said the focus on cortisol & the impaired stress response was misleading, as being opposing anabolic/catabolic hormones the DHEA:cortisol ratio was of more importance as indicated normality of HPA axis.
The brain senses raising cortisol levels and should decrease CRH & ACTH but because both cortisol & DHEA/DHEAS are under regulatory influence of pituitary behaviours which are extremely sensitive to excessive glucocorticoid production, a down-regulation in some part of the HPA axis results in reduced DHEA secretion. Therefore, a good ratio is when cortisol & DHEA follow the same pattern, because otherwise when cortisol starts to rise driven by elevated ACTH whether from chronic stress or a tumor, DHEA eventually starts to fall.
It would be really unfortunate to have pituitary issues after an adrenal adenoma. Is it not possible that the changes made to the HPA axis during the subclinical Cushings haven’t completely reversed, in spite of having the offending adrenal gland removed? Were decreased ACTH levels actually confirmed after adrenal gland removal? Have you had a CRH stim test since? Have you had a CT/MRI or ultrasound scan? Have you had a dexamethasone suppression test?
Supplementing DHEA can be beneficial and is legal in USA, although a controlled drug in UK, but given your history & ongoing investigations it would be unwise, and especially as your Nurse Practitioner has requested you specifically not to at this moment. It would be better to find the cause of raised ACTH than to muddy the waters by trying to raise DHEA levels to match that of elevated cortisol levels induced by the raised ACTH.
Did your Nurse Practitioner explain that ‘favouring’ cortisone & other metabolites can be down to excretion issues. I had to supplement Ca D-Glucarate & DIM for a year before retesting. I was also low in sex hormones, glutathione, melatonin, dopamine, DHEA but also cortisol. The only high was testosterone and there was no way I wanted a hairy chin! 😬 Problems can be genetic but equally enforced changes by years of inadequate thyroid hormone &/or a congested liver.
All thyroid hormone replacement can be intolerant of adrenal issues which creates a vicious circle. Have you considered introducing just a little T3 to encourage your Levothyroxine to work better as opposed to making a complete switch. I am only heterozgous for the DOI2 variant but could still never tolerate more than a tiny bit of T3 due to previous adrenal issues. It gives me healing, energy, clear thought but puts evervescent bubbles in my head! 🤪
Yes, NP Rx'd 5mcg Cytomel. She wanted me to take it w/morning levo but I told her I've been very intolerant of it in the past, but yes I would like to try it again. So I tried 2.5 in the afternoon (was afraid to try it in the morning, and she was ok if I tried the afternoon) and it firstly was wonderful, but then turned awful w/heart racing and later a crash and burn for the rest of the day/night. It was very depressing. Haven't tried it again. Someone told me I need to get my iron up first. I'm working on it, but slowly now as taking it plus B-complex and B12 is a bit much for me everyday. I think the iron (2 Thorne capsules a day) was getting to me, or could just be regular nausea I've been experiencing. I've also noticed my heart rate is lower in the past few weeks. Usually runs around 80 now it's 65-72ish. Low for me, but BP is still high. I wonder if I should try upping the T4 to 75 like I used to take. Maybe it's time. I think I'll ask the NP about it.
Yes, you're right, I found out that this adrenal gland is responding appropriately. So yes, that is a good sign, but kinda worried about what you said, as I've wondered, the ratio lends itself to a lower reserve. So am I experiencing the high before the low? Maybe my body doesn't like MY cortisol, seems to like Cortef better, but not anymore. Can't handle it either, plus don't need it. One endo upped my cortef thinking to shut up the ACTH but it didn't work. This was back in April. What he did was took me off Levo, upped Cortef to 15 , 10/5 and on the 3rd day all my symptoms vanished, I felt normal. My appetite returned, I was back to cooking (I love to cook). Family was ecstatic, as was I. But the dreaded day came about 10 days later, time to go back on Levo. TSH was 5.73, plus the ACTH didn't shut up, but was a high normal. So he pretty much thought oh well, too bad, you'll have to feel like crap again. He did nothing more. Didn't try to get to the bottom of it. Tried one more endo and she was worse. Gave me a Synacthen test and said all is normal, take Levo and have a nice day. So back to the NP and she's been trying to think further into the matter, but it's a slow process, but she's better than the endos and she's open to new things.
No she has not explained the favoring of the cortisone yet. Our next appointment is to go over the DUTCH test. Right, was wondering about the excretion issues. I do wonder about my lack of good FT3 all these years on Levo. The range is 2.0-4.4 and I'm consistently 2.4-2.7.
One time I hit 3.0 (woohoo). How much T3 do you take? Yes, I'm very interested in adding into the mix, just don't know how to get passed the side effects. Is it just a matter of getting used to it? Did you ever do anything about low melatonin, dopamine, etc? Or are you due for the DUTCH to see about all that now? What made the biggest difference in feeling well again? Was it balancing the hormones? Thanks so much for your insight. The DUTCH test is a real learning tool and it's taking me a while to understand it all.
Also, yes, my cortisol does represent a diurnal rhythm, so makes me think there isn't a pit tumor, but NP wants to rule it out, and I'm all for that. Also, what's strange is that despite the high cortisol I cannot gain a pound. I rather look and feel exactly like someone w/Addisons. It's so backwards on everything and it's very puzzling, even to the NP.
"Supplementing DHEA can be beneficial and is legal in USA, although a controlled drug in UK, but given your history & ongoing investigations it would be unwise, and especially as your Nurse Practitioner has requested you specifically not to at this moment. It would be better to find the cause of raised ACTH than to muddy the waters by trying to raise DHEA levels to match that of elevated cortisol levels induced by the raised ACTH"
Agree 100%. Even more-so since I tried 5mg today and it through me for a spin.
Yes, T3 can be intolerant of inadequate iron levels . Many members have benefited from the 'T3 speck of dust’ dosing regime which is literally a bit of crushed T3 powder on the end of your finger once or twice a day and then gradually increasing over weeks/months. Maybe this is for you?
I would say you definitely don’t need Cortef with elevated cortisol. I don’t understand endos thinking as if high ACTH isn’t responding to already elevated cortisol levels, taking glucocorticoids higher will surely just accentuate the problem. Also, you can’t replace thyroid hormone with Cortef, although the exercise fruitlessly proved your hypothyroidism is primary.
My meds have been stable for several years but recent suboptimal NDT enforced a switch to Armour which I found T3 potent, so have successfully introduced some Levo. Am presently medicating 1.5 grain NDT + 50mcg Levo, so about 13.5mcg T3. I never need to go too high & am very reticent of change because suffered an episode of psychosis several years ago.
All neurotransmitter issues have resolved with optimal thyroid hormone & HRT that replaced post menopausal & deficient sex hormones resulting from long term low adrenal reserves. You might eventually need the same or pregnenolone, DHEA, etc. Also I had all amalgam removed & chelated heavy metals for about 6 months. Should have been longer but I was fed up with copious amounts of pills and actually felt so much better.
Regarding the chance of a pituitary tumor effecting cortisols circadian behaviours, I guess it depends on the amount of ACTH that is being produced and also other factors such as melatonin that influences circadian patterns greatly. The extra ACTH has be driven by something. How elevated is it?
8/18 labs showed ACTH 87 (7.2-63.3) w/cortisol 18 (6.2-19.4). On my Genova & ZRT my 1st point 8am is high normal, 2nd point diurnal around noon is what goes over. So I wonder what my ACTH is around 11am. I'm going to get this tested because I want to know. Yes, something is driving the ACTH. In the past years I've taken 75Levo/7.5Cortef and ACTH ran normal at 40-50 with cortisol around 11-13. Out of the blue this year in March, ACTH was 69 and cortisol 18. First alert for the NP and me and then questioning my Cortef intake. This put me in a tizzy because it's the Cortef that has kept me feeling normal all the years so weaning off was freaking me out. But alas, that is what I have ended up doing, and I have felt horrible since. During the midst of this crisis, my hip gave out and I had to get it replaced in June. Recovery was awful. Feeling this way AND recovering. Was a very emotional ordeal. After surgery ACTH literally dropped to 31 and I was convinced it must've been the hip brewing the inflammation, but alas, again, new labs show the ACTH is up again. I keep wondering what kind of output should 87 ACTH be for a cortisol level. I think I'll have to find a Cushing's board and find out.
When I had Sub-Clinical Cushing's I had 'undetectable' ACTH for many years. Cortisol output was from the adenoma, yet it never secreted high amounts so the effects were minimal physically but they were there, like slight weight gain, buffalo hump and collarbone fat pads. All went away after surgery ACTH returned while taking full replacement cortef. then the not-so-wonderful Hashimoto's reared itself. And during the wean it became impossible to do so. I had my surgery at JohnsHopkins. The endo there was very typical, but forgiving and kept me at 10 Cortef. But he would not raise my Levo as time went on and I felt bad again, thinking if it's not one thing it's another. I'll never feel well.
Then I found the integrative doctor and she upped me to 75 and that was it, was my sweet spot. I remained 75/10 for a few years, then she tried me on 5 Cortef but didn't work, but 7.5 did, and I remained there since. Then the doc left the practice and replaced w/NP. She was OK and I was doing fine so no biggie, until this year and it really put her to the test. She was on the case, but did suggest I see what an endo had to say. That made my confidence in her drop, but I understood what she meant. Endos were fruitless and cared not one bit how I felt, but did come in handy for surgery as I needed an endo sign off. I returned to her in early July and she keeps me on 62.5 but wanting me to try T3. Iron labs were only 70 (I'm usually high normal) but she didn't want me to supplement iron. My next lab a few weeks ago it was 50, so she dropped the ball there, and now I have to supplement. I will re-test in a few weeks to see how this bisglycinate is working.
Somewhere in the middle of all the mess after Hashi's Dx I did try NDT that I bought online, NatureThroid. I kept at it for a month but was dizzy the entire time despite using Cortef. Now here I am today using Levo and I'm dizzy all the time with no Cortef. I will try the speck of dust on my finger this afternoon. I've not seen that on this board, but does sound like a reasonable way to try to get my body used to it. Just let it dissolve on my tongue? or wash it down? I have 5mcg tablets. Should I quarter it, then break a quarter in half and crush it?
Thanks so much, Radd. I'll let you know how it goes.
I can only endorse what RedApple says below. I was put on DHEA by a so called anti-aging doctor (now apparently called functional doctor) and developed a lot of side effects - weight gain in the abdominal area (which would suggest high cortisol), increased facial hair, oily skin, acne, fluid retention and bloating...I have stoppped it but am still stuggling with the side effects. I wasn´t on it for very long, but the side effects were really bad. I now see some improvements - less oily skin, acne gone - but I am still overweight and need to wax my chin and upper lip every other week or so. My fasting insulin and blood sugar levels suggest insulin resistance. I absolutely would never recommend DHEA as it can convert to several hormones and you have no control over this.
I agree, it is a touchy thing to take. I took it in the past when I had Cushing's. I felt no side effects but I did feel like it was puffing me up. Don't really remember liking or disliking it, more like I felt it did nothing in particular so why bother. After trying 5mg yesterday, I won't be touching the stuff, at least not anytime soon. I feel like I'm dragging, weak, dizzy. Laying down is the only cure for the dizzy feelings. Cortef used to save me from all of that. I don't think my body likes my own cortisol. Weird. However, my DUTCH test said that even though I had a high 24 hr Cortisol, my body favored it's metabolite Cortisone. So maybe my body is breaking down the cortisol too quickly. Not sure, as it's the first time I've been tested for this and I don't really understand what it means. Have an appt next week to go over it.
As your ACTH is high then that needs investigating, it is possible to have an ACTH secreting tumour somewhere else in your body such as the lungs not just the adrenal glands or pituitary gland. It needs checking out.
Thank you, PaulineS, Yes, that's right, it could be somewhere, but we're going to start w/the pituitary. Since I've had a Cushing's in the past (from adrenal) , it's raising suspicion. Otherwise not sure why the over-secretion of ACTH, unless it's truly a case of pit asking a sluggish adrenal to make more. Also, many docs say the phlebotomist gets the ACTH test wrong because it needs an iced tube, then they have to separate the plasma from the cells by centrifugation in a refrigerated centrifuge, then freeze. So the result not always trusted, but mine has been tested a dozen times in the past 6 months and it's always above range. If nothing shows up anywhere, I really don't know what is done about it.
It's the same protocol here in the UK that ACTH needs to go onto ice straight away so can only be taken in hospital. I had Cushing's from a pituitary tumour which was removed 6 years a go today. I'm still on Hydrocortisone as my pituitary didn't "wake" up.
My ACTH was high & caused cortisol levels to be high as well, I can't remember the numbers although our units range is difference to yours but cortisol would have been in the hundreds. Following surgery I had to go onto Thyroxine as my pit no longer produced TSH.
Do you remember the number of the ACTH? Was it far over the range or just somewhat? I'd be interested in knowing how much ACTH it took to increase your cortisol level to the hundreds.
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