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Experiences dealing with pheo tumors and loss of adrenal glands

ballroomdancer
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Has anyone had any symptoms as a result of losing one of their adrenal glands?

Has anyone had any symptoms as a result of losing both adrenal glands and living on medication to replace the function of the adrenal glands?

Has anyone had any female/gyn. issues and has a concern it may be from losing an adrenal gland, or dealing with pheo tumors?

If you loose both adrenal glands, should VHL patients be concerned that the medication needed to replace the function of the adrenal glands may increase tumor growth?

Explore topics in this discussion:

Asthma Surgery Arthritis Pregnancy Diabetes Rheumatoid arthritis Prednisone Lupus Osteoporosis Organ transplant Diarrhea Nausea and vomiting Stress

7 replies

TinaDiane

Hi,
I had a bilateraladrenalectomy 23 years ago, and have been on replacement meds (hydrocortisone and florinef) for the entire time. I have had no problems, what so ever. When I get sick, I have to take extra hydrocortisone. If I have surgery, I need more also.
If I get sick with nausea and vomiting, I need to be very careful to try to keep the meds down. The hydrocortisone comes in injection form if you need it. I have never been hospitalized due to an illness from not taking my meds. Those of us with out adrenals, MUST take our medication in a regular fashion, usually 2 times per day. It is not safe to miss a dose.
I have had no ob gyn problems with out my adrenals.
The medications that we take when we don't have adrenals is only a REPLACEMENT of the steroids and substances that our adrenals make naturally.
I was very happy to have mine out, actually. I had TERRIBLE symptoms from my tumors for over 10 years before they found them. My life has been MUCH easier since the surgery.
Good luck on your path,
Best of health to us all,
Tina

Joce24

I would agree with the first reply. I am on replacement steroids as well (only hydrocortisone as I have a partial gland and don't need the florinef) and I've done quite well. Immediately after my second surgery it did take a while for my menstrual cycle to regulate itself but it was back to normal within 4 weeks. I am now 39 weeks pregnant and have had no issues with the pregnancy. I maintained my replacement dose throughout pregnancy right up until 2 weeks ago when it was decided I needed to increase by 5mg which all literature supports. During labor I will get my steroids by IV every 8 hours at an increased dose as labor is very stressful. But otherwise, no problems. On the other hand, if I miss taking my meds within a few days my skin turns very dark and I feel just awful; as my surgeon described it it feels like impending doom. Needless to say, I do not skip meds as I learned from that mistake quite quickly.

ballroomdancer

Dumb question, but i must ask: when you both talk about steroids, does that cause weight gain?

TinaDiane

That is not a dumb question! Our adrenal glands make steroids that the body needs. Steroids are also available in prescription form. We (those of us without adrenals or not much adrenal function) take a very small amount of steroids to replace what the adrenal glands make for day to day bodily functions. For example, I take only 15 mg of hydrocortisone per day, under normal stress. Doctors prescribe prednisone and hydrocortisone (both are steroids) for different types of medical care, as they are powerful drugs that have many benefits, mostly antiinflammatory: they also have some side effects. Weight gain, osteoporosis, round chubby face, and diabetes are a few of the side effects in LARGE DOSES. People who have lupus, asthma, organ transplant, rheumatoid arthritis may have to take LARGE doses of these prescription steroids (prednisone or hydrocortisone) to treat them at different times during their lives.
These doses are often 50, 75, 100 mg per day! Prednisone is 7 times stronger than hydrocortisone, so you can see we are talking about an entirely different situation than replacement steroids for
VHL.
Long story short: replacement steroids for folks without adrenals, does NOT cause weight gain. I weigh the same that I did 23 years ago.
Take care, hope this helps!!
Tina

donnab

I have had 2 pheo surgeries. The first one I had one of my adrenal glands removed. The second time I had a partial adrenalectomy, so I currently have half of an andrenal gland and it's been working fine for me so no replacement meds have been needed.

I was also sick for quite a while with my first pheo before diagnosis and then trying to get it under control before surgery. Even though I had a lot of issues going on with my body because of all the catecholamines/metanepherines that the pheo puts out, I never had female/gyn issues that I was aware of.

The only female/gyn issues I've ever had due to a pheo was being pregnant and totally unaware I had a pheo. The Doctors thought I had sudden onset preclampsia (toxemia) during the latter part of my pregnacy, but it turns out it was most likely the pheo tumor causing similar symptoms- severe high blood pressure that resulted in an emergency c-section 6 weeks early.

Jacki1

Hi Tina,

You mention taking 15mg of hydrocortisone; I'm curious as to what others take? I've been without since 1967. For years I was taking 12.5mg 3 x daily. I'm now taking 10,10 and 5. I have osteo issues, so I think I like to bring it down some more. There doesn't seem to be a standard in the medical community!

Thanks, all...Jacki

TinaDiane

Hi Jacki,
You have been living without adrenal glands for a very long time! Good for you!
I was on 40 mg/day of hydocortisone for a few years. Then my endo said new research said we did not need that much. So we slowly come down to 30 mg/day, and then to 25, and I was on 25 for a few years. A new endo said, "Well, I read something that says you can get by on 15 mg/day, but you better take an extra dose every 3-5 days if you feel really run down, weepy, sluggish etc.
So, slowly I got down to 15 mg/day. I have been on this dose for about 15 years. I take 10 in the am and 5 about 3 pm. I do double my dose if I am sick (like a terrible cold, or if I get diarrhea). I also take an extra 5 mg if I feel like I need it. This is a weird feeling that is hard to describe-- I feel very blue, very weepy, a little out of it and very sluggish. I did have a very chubby face on 40 mg/day, and that is gone now on this lower dose. Some people may need a larger dose, but I am not sure how the docs know. My docs say it is trial and error. I would suggest talking to your endocrinologist and see if he or she is willing to have you taper your dose and pay close attention to how you feel. Do you take florinef too? I was on 0.1 mg/day but my doc did a blood test for renin from the kidney and said I was on too much. Now I take 0.1 mg of florinef every other day.
Take care it is always nice to meet someone who shares the same type of medical situation!!!! We are not alone on this website!!!!
Tina

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