Low cortisol but not Addison's

[MohsinB]

Hi,

All cortisol data is in nmol/L

I'm 29 years old, but have been feeling tiredness for around 5 years now. When it first started, my doctor just said it's stress and so I left it. However over the past 6 months, I have been feeling steadily worse - by 9pm I'm a zombie. I wake up with very low energy levels and muscle aches, rarely wake up feeling refreshed, I am struggling with mood, low libido and also developed a small brown patch on my back over the summer (hyperpigmentation). I have also been experiencing a stinging feeling in my left eye as night approaches, but apparently that's not connected. Went to my doctor who did a full blood scan and noticed a low level of Vit D12 and cortisol. Cortisol reading was 165 at 8am and so I was referred to an endocrinologist for an ACTH. They checked again and got a reading of 193 at 11am. Did the ACTH, initial reading 216, after 30 minutes 680, after 60 minutes 782 - clearly not Addison's.

So what is the problem? My adrenal glands are working just fine, but not producing the normal levels. I usually sleep around 6-7 hours a night; do I need to sleep more? Do not smoke, drink or take any drugs. Blood pressure and blood sugar normal.

Thanks

[LowCortisol]

you say that in the UK you will not have the tests perfomred unless you pay for them. I understand that. For all I t could cost a hundred quid. But you MUST pay if you want the results. And with the results you can take on the right treatment.

You do not want to go the NHS way and not pay and not know until down the line you will possibly get the test for free but by then you will have other problems and will pay not in pounds but in a lower quality of life.

Bottom line: get all the facts asap. THEN you can make the right decision. If getting the facts costs money, think of it as an investment in your health.

[rumpled]

ACTH at 1? was it done properly - as in a chilled tube, spun immediately? Did you ask if they process it right after the centrifuge for freezing?

If it sits in the bin, bam, your ACTH degrades and lab handling can botch your results.

BTW you can have an adrenal issue with and ACTH of 1 as well - it means the source is pituitary! Not adrenal.

[hopehet]

Yes, I've been on prescription vitamin D in the past, but I take the OTC D daily. My surgeon just removed my toenail a few days ago. We both were concerned I had my 3rd bought with melanoma (were caught about 3 months before spreading). I take my Vit D levels pretty seiously. Thanks for asking.

Hopehet

[hopehet]

Thanks. My cortisol levels have been checked. They are really crazy. I tend to have more energy at night and less during the day. It's very frustrating. I take DHEA, testosterone cream, and progesterone cream. Endocrinologist won't do anything til my cortisol levels are at an Addison level. One time I had it checked at around 4 pm and my level was a 1.

[rumpled]

I can understand. It took me 12 years and a lot of money to get my diagnosis in the US. I had to go out of network and travel very far.

I would stay with the vitamin D though - it takes a while to build up. B12 can also be an issue.

I had Cushing's with normal ACTH. A lot of that was lab error.

[MohsinB]

Hi rumpled,
Many thanks for your response and apologies for not responding sooner. Since my last note, I have pretty much given up trying to find out what the problem is for now; following the results of the ACTH nothing further has been done. I was given Vit D supplements, but don't feel much of a change. I will keep your comments in mind once I decide to give it another go to get to the bottom of this!
Thanks again

[MohsinB]

Hi there,
Many thanks for your response and apologies for not responding sooner. Since my last note, I have pretty much given up trying to find out what the problem is for now; following the results of the ACTH nothing further has been done. You are right, I need to be tested over the course of the day and then find the cause of the problem, if there is one. But in the UK that is not easy to do unless you are willing to pay for it!
Thanks again

[rumpled]

Is your doctor treating the low vitamin D?

One can pass the stim test and be on the verge, so to speak, of failing - so the stress test can be passed as a last hurrah but usually the results are pretty borderline. You did pretty well.

Cortisol can vary- so it can take time to pinpoint the issue. As well, it is a salt wasting disease so issues with sodium and potassium should be noted.

Fatigue sadly is a general symptom that can be attributed to many things so you may have to look for perhaps at other auto-immune issues or another cause, while keeping the low cortisol on the burner as a thought while you rule other things in and out. It is also possible too that there are concurrent issues and not everything may be related.

[LowCortisol]

Cortisol should be checked twice in a day: say at 8am and 5 pm. If you have a very low PM reading that could explain how bad you feel at night.

Also pain in arms and legs on arising in the morning could also indicate low levels of cortisol.

Do the cortisol test twice in the one day to confirm if you really have a deficiency in cortisol. After that, the REASON for the low level needs to be determined