I have been diagnosed with a small 12 mm tumor on my left adrenal gland. Have had so many tests and they've all come back negative for a pheochromocytoma, yet I have so many symptoms of one. I'm also going thru menopause and many of the symptoms are the same, like sweating, nausea, insomnia, anxiety, heart palpitations, weight loss, but the worst one is blood pressure spikes. I've been to so many doctors and they keep testing or referring me to other doctors. Seen cardiologists, endocrinologists, kidney doc, internal doc. Seems like they all have a different opinion, some say my symptoms must be menopause, others say it may be a pheo. Now I need to wait until November to have another MRI to see if it has grown. This has been going on for almost a year and I am having a hard time handling all these symptoms. I can put up with menopause, but when my bp spikes to nearly 200/100 plus, it gets really scary. Just wondering if anyone has any information on adrenal tumors. I'd hate to have surgery to get my adrenal gland removed when all along the problem was menopause! Any help and information I can get would be great. Thanks.
Pheos can cycle can so many of the other hormonal tumors - but the docs have a hard time with that concept. So you can have the symptoms and test normal. Do you get copies of all the tests? Have they done a biopsy?
As well, have they done cortisol testing? You could have AI - some people have low blood pressure but oddly some people spike when they are low and your symptoms fit with that so your issue fits there too - how much testing as been done, say on other adrenal hormones like ACTH, cortisol, dhea, renin and aldosterone? How is your sodium and potassium?
Imaging is one thing but blood testing is primo - you already know you have the lesion now you have to know what it is doing. What about venous sampling? They need to test - test test test.
I've had tons of tests done including 24 hr urine and blood work checking for catacolamines and metaphorines (sp?), they've all been done 3 times and keep coming back negative for a pheo. I've been to so many different doctors and they all have different opinions, and say no to a pheo! My OBGYN says I'm having menopause symptoms, haven't had a period in about 4 years though. He put me on estradiol and prometrium which is making me nauseated. I don't like being on hormones and especially if my symptoms are not from menopause but an actual pheo! Going to stop the hormones when I go back to see him next week. My internal med doc says I must have anxiety, 2 cardiologists think I have primary hypertension - labile because it spikes and is all over the place! Two endocrinologists have said since it's not emitting anything, must be just a tumor there. Even went to a kidney doctor and he said it's hypertension and my kidneys look fine. They've all done testing on me. Have also had a CT Scan which said it appears to be a pheo, MRI and ultra sound which just identified it as a small tumor. Every one has a different opinion and I've been going around in circles for 1 1/2 years. But I feel better today because I went to see a new Cardiologist who has had some patients with a pheo and he said sometimes they are very difficult to diagnose because they don't always emit and it's hard to catch sometimes. He thinks it is a pheo. Finally someone is going to help me! And also, I'm going to see a surgeon next Tuesday. I know an adrenalectomy is a scary surgery because of blood pressure and heart rate problems that could arise, but at this point I'm wanting the surgery if they suggest it. I just want my happy self back! And I'm tired of being scared of bp spikes. Thank you so much for writing back, I really appreciate it. Please write to me again, ok? Did you have the same problem as me??
I had elevated cortisol. I had both my adrenals removed. Why have they not tested your cortisol? That seems a bit silly to not check? It has a lot of the same symptoms - look up Cushing's and even the cyclical nature fits.
I would find a better endo - are you at a big hospital - neuro-endo?
Thanks so much for writing back. I don't know if they've checked my cortisol but will make sure when I go see the surgeon this coming Tuesday. I'll also ask him about Cushings. They will be my first questions to him. I've seen 2 endos and he'll have the results from them, I'm sure. I'll be very careful and I thank you for bringing that up to me. I'm from the Phoenix area so there are lots of choices here. It's just hard to find a doc who takes it to the next step and pursues things. I feel so relieved to have finally found a new cardiologist that has good knowledge of pheos and high blood pressure so between he and the surgeon, I'm starting to feel more confident that something will get accomplished. I just can't believe how many docs have just given me more meds to try and sent me on my way! I know my body, and I know there is something wrong. I have a question for you.... how are you doing after having both of your adrenal glands removed? Are you taking some kind of hormones because I know how important the adrenals are in our body. Please tell me about that. My tumor is on the left adrenal gland and I'm scared to death to have the gland removed, if that's what it comes down to. How did your surgery go and when was it performed? Did you have insomnia problems before they removed them? That's a really hard thing, not being able to sleep. But the bp spikes take the cake! Oh, yesterday my doc put me on spironolactone that will help with the bp by preventing excessive aldosterone from being secreted by the adrenal gland. I'm also on Toprol XR and Lisinopril to help with the bp. I hope to hear back from you soon and I'll also keep you posted. Thank you again!
I had some mild BP spikes - nothing like what you had. I did start to develop heart issues and was under the care of a cardiologist for an irregular heart beat. I did fail two sleep studies that showed I did not make it into REM sleep and woke up 100's (as in 700) times a night. Unlike most of my friends, I did not have apnea they called my sleep hypopnea which I never understood. They put me on a beta blocker but since my BP was so low (LOL) I only took it when my pulse spiked high and I started to use salt tablets which I still use - I buy those by the 1000's. After I had my adrenals removed, my heart issues resolved. I still use the salt though - low BP for the no adrenals is needed.
In your case, your one adrenal *should* kick in after time - after a wean (see posts by upbeat) and then you should be off any replacements. This is going to take time and depend on the health of your other adrenal. In my case, I have none, so I replace cortisol, aldosterone, and dhea to make me continue living. I used to take hydrocortisone which is most like what the body makes for cortisol - but now I take dex but only because my ACTH is abnormally high. Florinef replaces aldosterone and that helps hold sodium. DHEA is an OTC supplement.
I know quite a few people without adrenals - it can vary. My doc calls me a failure. I developed a lot of illnesses after my adrenals came out and that is not the norm - so it seemed my body was using my excess steroids to treat myself for other disorders - my shoulders froze, I got proximal weakness etc. But overall, I am thrilled not to have Cushing's. Check out my pics.
Wow, you've been through so much... Isn't it somethng how some people go thru life and hardly ever have anything wrong with them, like my mom who is 89 years old and still doing well. Funny because sometimes I'll call her about 8:00 p.m. when I'm tired and soon to get ready for bed around 9. Many times my mom is getting ready to go over to the neighbor's house to play cards for a couple of hours! And all I can think about is going to bed! Pretty funny, huh? She's getting a bit unsteady on her legs, though, so when we go shopping she holds on to me, then the shopping cart while she's in the store. She's such a great mom. I enjoyed looking at your pics. Especially your cute kitties. We have two - "Buster and Barnaby". I love kitties. Thank you for sharing your knowledge about adrenal problems with me. I'll find out more on Tues. Scared if I do need surgery, but what a relief it will be if it works and I get my life back again. Just like you! Take care and please write again.
I am the example of what not to be. :)
Yes, the kitties are very rambunctious and lively - makes like more interesting. Grew up with dogs and cats and love them both. Enjoy your mom - I lost mine recently.
Surgery does seem overwhelming at first but if you need it and you have a really good doc, you usually come out better on the other side and it is worth it.
Thought this seemed a good thread to jump into so that I could give Jean some info, and rumpled an update.
Jean, I had a 4.5 cm tumor on my left adrenal gland discovered after a CT scan for unrelated issue--appendicitis.
After my appendectomy, I spent weeks researching adrenal tumors and found this site. It was, AS IS rumpled, invaluable for knowledge, support and understanding what it takes to get correctly diagnosed.
I tested, tested and tested over a 6 month period because sometimes my cortisol was high, teenie bit high, then normal, and even once low! Glad the doctors were so patient since I kept asking for repeats and questioning everything. But I wouldn't have known to do this if it hadn't been for rumpled.
Long story short, I was cycling up/down in cortisol. The tumor was functioning and had to come out. Unlike you, I didn't have blood pressure problems pre-surgery, but like you I had an irregular heartbeat. PVCs to be exact, 28,000+/- per day to be exact. I was on acebutalol to control them, which worked, but now post adrenalectomy I take it 1x/wk+/-, and the pvcs still aren't an issue.
I must say that I was worried about the surgery, terrified actually. I only had access to a "general" surgeon, BUT he did a wonderful laproscopic surgery and I had a better recovery (pain wise) with the adrenalectomy than I did with the laproscopic appendectomy. I almost had no pain at all!!!! And my sleep was dramatically improved, no comparison, even on hydrocortisone I slept like a baby.
I rapidly tapered HC and in about 4 weeks my right adrenal appeared to regain some function. It wasn't a piece of cake, I had several icky, "flu" like days, many drops in BP, and extremity swelling was a big issue. But I wanted and needed another surgery for something else and so I did my best to taper taper taper HC to 2.5 to 5mg every other day, every few days, etc.
I'm now 2wks post hysterectomy, and while they gave me a stress dose of HC for the surgery, I've only thought I needed 5mgHC on two separate occasions since then.
I think my remaining adrenal gland might be producing too much now!! OMG. Either that, or my iron levels are already starting to replenish and I'm experiencing what it feels like not to be iron deficient. I know iron can't replenish that quickly, but I can already tell there is a difference in energy even while I'm shocked at the fatigue I had following this abdominal surgery.
I now have what I call my happy smile incision, its pretty low so even IF I wanted to wear a bikini, you wouldn't see the scar. HA, HA, HA, me in a bikini HA, HA, HA.
Loss of one hormone can impact the level of other hormones - so losing or changing that with the hyst (if I recall you had at least one ovary removed?) . I know it impacted how to dose my thyroid and my growth hormone. So the fatigue could be that your other hormones are off - so have they done any other testing post op? It also could be just adjusting to the hyst. Personally once I recovered, I was so happy to not be in pain - recovery takes a couple of months though.
I hope you keep getting better! I hope the other adrenal stays healthy!
Actually I still have both ovaries, even with cysts, the gyn/surgeon thought it best to leave them for ANY hormone production, which thankfully, knock on wood, doesn't seem to be an issue so far.
I feel surprisingly pretty good, and as a result, without symptoms, I don't think any of the doctors will order tests to check levels of anything --unless I ask, but it would take some effort to convince them.
Hi there. So good to read your posts. I went to the doc yesterday about my possible pheo and if it is one, getting it removed. More blood work and another 24-hr urine done so I should have the results soon. I've already had 4 complete tests done this past year and they come back negative. Also have had CT Scan, MRI, and ultra sound. All confirm it's a mass there. Doc said if this blood work and 24 hr urine comes back negative then there's no need to remove it but to keep an eye on it. I'm wondering if this tumor can stop emitting the excessive catacolamines and metamorphines (sp?) and then start emitting them again. He told me the level in my blood would remain elevated for some time and not just turn off and on. But during my research I remember reading that they can be very difficult to detect sometimes. Even my Internal Med doc mentioned that. So I have a feeling the tests will come back negative again. I was almost hoping it would show positive and that would explain my high blood pressure spikes. I would hate surgery, but if it corrected my bp problem, then it would be worth it. The doc yesterday said he believes I have primary hypertension which is hard to control. So I just don't know anymore. All I can say is that I am so tired of this I can hardly take it anymore. I'm also going thru menopause so that doesn't help. Have a hard time sleeping so I'm on Xanax and that does help. It's the only thing that helps as I've tried tons of other meds and they made me so sick to my stomach and very little sleep. Oh well, sometimes life can be difficult, that's for sure. Thank you so much for listening to me and your ideas. Hope to hear from you soon.
"Although the presence of signs and symptoms of catecholamine excess remains the principal reason for initial suspicion of pheochromocytoma, this does not imply that all pheochromocytomas exhibit such manifestations. Increasing proportions of these tumors are now being discovered incidentally during imaging procedures for unrelated conditions or during routine periodic screening in patients with identified mutations that predispose to the tumor. In such patients the clinical presentation may differ considerably from those in whom the tumor is suspected based on signs and symptoms.
The varied signs and symptoms of pheochromocytoma mainly reflect the hemodynamic and metabolic actions of the catecholamines produced and secreted by the tumors . Hypertension is the most common sign and may be sustained or paroxysmal, with the latter more usual presentation occurring on a background of normotension or sustained hypertension. Pheochromocytoma may also present with hypotension, particularly postural hypotension or alternating episodes of high and low blood pressure ." http://www.endotext.org/adrenal/adrenal34/adrenal34.htm
It does not always have to be elevated... so your doctor really needs to evaluate you differently as well as test cortisol. I would seek out another opinion!
Upbeat - dang memory... hope you still continue on the road to recovery!
I have found the best way to get to sleep is Mandarin Essential Oil. I have been putting drops on my pillow now for over a month, and for the first time in over a year, I have gone straight to sleep every night. I have just had a CT Scan and they have found a swelling in the adrenal gland, so I have been referred to an Endocrinologist.
I don't know of a standard to biopsy an adrenal. I do know they do venous sampling etc. I know they know after pathology, but I don't know about biopsy - but then again, I am not a doc... so it is surely possible!
Wow! I was just reading your post and it was like I was reading my life. Have you had brain surgery too? I have. Anyway, I had an adrenalectomy (right adrenal) in June 2010. All my symptoms were Cushing's like prior. They did not put me on any steriods after the surgery and I returned to the emergency room 2 days later. They readmitted me and after a week of testing my heart (thats what they thought the problem was) they realized that I needed to be on steriods because my left adrenal was not working yet. They put me on 15 mg. day of hydrocortizone. After a month I went back to the doctors because I was really tired all the time and felt like crap always, so they upped my dose to 30 mg a day. That made me feel alot better. Now I am worried because my adrenal is still not working after almost 10 months. I, like you did, am now getting ready to have a hysterectomy and worry about that. I think they are only taking my uterus but I do have cysts in my right ovary which I will ask them about as well. I am going to get my adrenal tested again prior to the surgery. Hopefully it will be functioning. Have you had yours re-tested again? I have a feeling that mine is still not functioning due to the fact that I am still on high doses of hyro. There are a few goods things that came from my surgery - that was my bp and cholesterol were high pre-surgery and both are now normal. I am sleeping sooo much better too. How have you been since your Hysterectomy?
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