Cortisol

[Leahc23]

So I have had chronic vulvar burning and have seen 10+ doctors with no diagnoses except " vulvodynia" well I am going to travel to see a Dr . In PA, and first thing he did was order a cortisol and vit D test. To my surprise, my vit D was 28, and my cortisol was 0.5 in am! So I went to an endocriniologist, and he said that it's impossible as I would be in a coma like state on my bed. I feel exhausted everyday, but I thought that was the amitriplyline and gabapentin I take at night. He ordered the blood test again. I went in at same time 830 am and now it's showing <0.5 my other labs look great. He also ordered acth plasma, and that was normal. Why could all of my other bloodwork be normal, including the acth plasma, but my cortisol be low? Should I be worried? Could this be contributing to my chronic pain? I'm waiting on him to review that bloodwork and call me in. I ended up reviewing it on my chart on my own. Thanks for the input!

[Bombicka]

Hi I am still in pain and I have no idea about your blood test. But after watching pelvic floor conference and Amy Stain I think it could be nerves and spasm in pelvic which is mostly missdoagnosed. Try to look at that and Pelviwand. I have just order that and i will give it a try because my blood test are keep comming back clear.

[Tinker777]

I had adrenal cancer where I lost 1 of my adrenal glands, the one that’s left doesn’t work yet because my pituitary gland is not sending messages to adrenal to work cos of the chemotherapy I was on. The adrenals produce cortisol which your body needs, I am now cortisone tablet dependent until my gland kicks in again. Don’t know if this helps you, just thought it may have a connection.

[Leahc23 in reply to Tinker777]

I'm so sorry to hear that. How did you find out you had adrenal cancer?

[Tinker777]

I had pain in my right lower to middle back, where the kidney is, as the adrenals sit right on top of kidneys. I had a surgeon who was incompetent & said go home & get in with your life, I am not going to operate on you, the tumour was growing off the back of the adrenal then & the size of a golf ball, he said it wasn’t malignant. 8 years later the pain was excruciating for 3yrs, they kept fobbing me off with pain killers. I insisted on a scan, the tumour was the size of a grapefruit, grown into the adrenal & when it was removed the biopsy showed it was malignant, so then had 3yrs if chemo. I could say I was lucky but if I hadn’t said anything I would of died. It’s a very rare cancer only 1 in a million get it.

I would just advise you, whatever is happening with you always get a second opinion. I also have a friend who from young has a problem with her pituitary gland & has to take steroids as well. There is a definite connection to low cortisol. I learned a lot from the treatment I’ve had.

[Leahc23 in reply to Tinker777]

That is terrbile. I'm so happy you took charge of your health, and got treatment! Tomorrow I go for an acth stimulation test. Curious to see what will happen. I just don't understand how acth plasma tell can be completely in normal range, but my cortisol is so low. Really doesn't add up

[Tinker777]

Good luck today, let me know how you get on👌

[Leahc23]

Hey! So he said I definitely have adrenal insufficiency. He said he would probably say secondary because my acth plasma was normal and not high. He injected me with the acth synthetic hormone, and I'm waiting to get this blood drawn. He wants to see how high it will go. He is putting me in hydrocortisone 10 mg 2x in am and 1x in afternoon

[Tinker777]

I’m glad your being looked after, don’t stress in the meantime cos it will use up the cortisol quick & affect the results.

[Leahc23]

I'm just worried about long term effects of steriod use on the body

[Alaine1 Administrator in reply to Leahc23]

Hi Leah,

Just to reassure you not all steroids are the same. When steroids are mentioned there is the tendency to think of anabolic steroids which is what some body builders use to bulk up. Some steroids medications used for asthma especially during a flare up can cause long term problems if taken frequently or long term. These do come with serious side effects and long term problems if used long term. Cortisol on the other hand doesn’t work that way so please don’t worry. It could be harmful if you don’t take it! So please take it if you need to.

I’m just wandering if you have heard of Addison’s disease? I had a friend with it. It might be worth mentioning to your doctors to see if that is a possibility. I’ve included a link to the nhs page on Addison disease below. Please let us know how you get on.

nhs.uk/conditions/addisons-...

[billyandbenny]

Hi I took Prednisolone for a long time for a chronic illness and that has stopped my adrenal glands from producing cortisol. I have finally managed to very slowly taper off the prednisolone, but now I have to take Hydrocortisone 30mg per day. But hydrocortisone is nothing like prednisolone it is the closest steroid to your own natural cortisol. It also does not stay in your body for anywhere near as long as Prednisolone, it also has no therapeutic effect on your body. It can be life threatening not to take Hydrocortisone if your body does not produce it's own cortisol because this steroid regulates so many things in the body, one being blood pressure. You may find you blood pressure is low.

[Pigs234]

How do you review your own chart?

[Leahc23 in reply to Pigs234]

The only way u can is if your dr has it set up through their office