Adrenal Tumor
Posted , 5 users are following.
Hi,
After being treated for about 20 years with conditions such as stomach pain, high blood pressure, diabetes, tons of stomach issues, and bowel surgeries, I recently requested that my doctor send me to a gastroenterologist. A few years before that, a tumor showed up on a stomach CT. They had been watching it for a few years. They kept telling me it was on my pancreas and nothing to worry about.
After seeing the gastro doctor and having 27 polyps removed, having a discussion about the tumor on my pancreas, and a cousin dying recently of pancreatic cancer, my gastro doctor decided to get a better CT of my pancreas to get a better look at the tumor.
The results 7 months ago, was that the tumor was not on my pancreas but on my adrenal gland. This has finally answered some questions for me, as far as right flank, leg, lower back and stomach pain, as well as, so much weight gain. I've also for years dealt with weird symptoms of heart palpitations, breathing issues, headaches, low potassium, low magnesium, low vitamin d, high liver enzymes, and last week they found protein in my urine. Could all of this be connected?
On top of this, I have recently been diagnosed with IBS and Gastroapresis. I have so much going on medically, I feel like I'm going to just crash. It's not easy needing to get answers, and some just haven't been addressed completely yet.
I'm having a 6 month follow up CT on the 16th for the adrenal gland tumor. I was supposed to have it a month ago, but just haven't had time. Yesterday, I found out my cousin has stage 4 lung and adrenal gland cancer.
I guess my question is, should I suggest instead of my gastro doctor continue treating me or request he send me to a doctor who deals with adrenal gland tumors? I'm just worried and at a loss as what to do?
They tell me how important this follow up CT is, but not much else. I just want to make sure they don't miss something important. Are there any suggestions, as to what my next step should be? Any thoughts appreciated.
Thank You, Lois
0 likes, 22 replies
claire45280 LoisCollis
Posted
Hi. I was diagnosed with HyperAldosteronism in early 2016. I was referred to the Endocrinologist from the Cardiologist as I presented with Hypertension, chest pain, and shortness of breathe on minor activity. My with symptoms weren't too bad on lying down, but became increasingly worse on standing and walking. Another symptom of this is low potassium. I didn't have this, but due to my other health conditions (Ehlers Danlos Syndrome- which I thought was the main cause of my extreme fatigue and possible Endometriosis, which can also cause severe fatigue) I went to my GP with what I thought was a flare up of fatigue. Anyway, after a tilt-table test ruled out POTS, the Cardiologist ordered a renin-aldosterone blood test. This showed I had a 'markedly' elevated aldosterone level. I then had a CT scan to rule out a tumour, as this can be the cause of the HyperAldosteronism.
Have you been checked for this condition? If you haven't had the renin-aldosteronism blood test it may be worth asking for this to be done. My endocrinologist said that although my CT was clear for a tumour- there is probably a small one present which the CT scan can't pick up on.
I only speak from my personal experience, so I have no knowledge of anything else you may need to check up on. I hope this is helpful to you.
Just to mention, once I started treatment for this my fatigue symptoms decreased enormously, along with the cardiac symptoms I had. I have felt better than I have for years and that is with still dealing with a few other conditions (now having osteoarthritis caused by the Ehlers Danlos). Good luck.
LoisCollis claire45280
Posted
I have never heard of that blood test before. I will definitely bring it up to my doctor. I'm so over being in pain and being sick all the time. I'm nervous about the follow up CT on the 16th. But will just have to wait and see. Thank for the information, I truly appreciate it.
irene64333 LoisCollis
Posted
rachel_36939 LoisCollis
Posted
I’ve just had major stomach surgery to remove a large (15cm) adrenal tumour. Mine was benign. I think you need to get it out whatever it is as it will be causing lots of your symptoms and issues. Good luck!
LoisCollis rachel_36939
Posted
I hope you are feeling better! I feel like it should be removed, but the doctor hasn't really brought that up yet. My tumor wasn't a large one like yours, I don't believe. I do feel a lot of my symptoms are due to this tumor. I will have my follow up CT on Friday. Hopefully, I'll have the results by the twenty second, at my follow up with the gastro doctor.
I kept telling my regular doctor the weight gain was not normal, but she couldn't figure out why that was happening along with the blood pressure meds needing to be continously changed and upped.
Here the past few days, I've been noticing I'm having more lung pain and breathing issues. I don't know if it's connected, but I'm hopeful that my gastro doctor will get to the bottom of it, and do what's best for me.
Sometimes, I worry that doctors don't take things serious enough. It gets frustrating, living with this pain and other symptoms.
Thank you so much for responding to me. I appreciate it. I wish you a full and speedy recovery.
Lois
irene64333 rachel_36939
Posted
Hello, Rachel. I hope you feel good. Please tell me did you have any symptoms before surgery, like cushing syndrome? The size of adenoma I have is 2.3×3.0 . But I'm sure it's functioning one. Also if the put you on any steroid drugs after surgery. Sorry for being too much, but I'm so afraid and lost. Need to get some information. Thank you
rachel_36939 irene64333
Posted
irene64333 rachel_36939
Posted
I dont know now, what ct scan revealed is poor lipid adenoma on my right adrenal gland. With following 6 months ct to see that there aren't any changes.
irene64333 rachel_36939
Posted
If it's not functioning why would they remove it? I've read if it's not bothering they leave it
Roddy999 LoisCollis
Posted
If I were you, I'd ask to be referred to an endocrinologist.
LoisCollis Roddy999
Posted
I think you're right. I have my follow up CT, tomorrow. I'll get the results on 22nd, I'm going to ask to be sent to an endocrinologist. Thank you for your input. I appreciate it.
irene64333 LoisCollis
Posted
Hello, I'm new here. I just found ct results last week. We were looking for a gallstone but found out that I have poor lipid adenoma on my right adrenal gland. Could find out what poor lipid means though. The same horrible symptoms Ive been going through. Gained lots of weight, insomnia, high blood pressure, fatigue. My face is covering with hair. I'm desperate. The doctor ordered blood and urine test, and put me for follow up appointment in a month. I'm not waiting I will see endocrinologist next week since they all are in the same building. If I were you, I definitely go straight to endocrinologist.
rachel_36939 irene64333
Posted
irene64333 rachel_36939
Posted
Not yet, I didn't talk to endocrinologist yet. I will see her this coming Wednesday. I'm glad I found this place where I can get some info
LoisCollis irene64333
Posted
I hope that you will get to the bottom of your adrenal issues, as well. I'm new here too, and slowly learning my way around. I had my follow up CT Friday. I'll see my gastro the 22nd, I'll get the results then, I'm hoping. I'm going to request to see an endocrinologist. I feel that it's in my best interest. Thank you for your response. Please keep me up to date with your case hun. I want to offer support, If I can.
I have literally spent years getting to the bottom of my health issues, and have done it without support, so glad I found this forum, I feel like I can relate to others, and have them relate to me.
irene64333 LoisCollis
Posted
I will let you know what my next step is as soon as endo. talks to me. I'm falling apart and my primary doc. keeps telling me it's because of stress and high b.p. please let me know what your endo. suggests you to do. Thank you and Good luck))
LoisCollis irene64333
Posted
I feel your pain. It is so stressful. When you're falling apart mentally and physically, it's horrible. You want answers. And for a while, I didn't think anyone cared. Please keep me updated, and I will do the same for you. I pray for good things to happen for us both.
irene64333 LoisCollis
Posted
Hi there, saw endo yesterday. She ordered tons of tests. At first she said not to worry but couple hours later called me back and said that she wants me to do pet ct which is very expensive and.I'm sure insurance will not pay for it. I'm going crazy can't stop thinking about it. Initial report says follow up ct in 6 months to make sure there is no change how can I wait for 6 months?? Probably I should insist to see the surgeon since whatever it is is functioning one. Thank you for your response
LoisCollis irene64333
Posted
Hi Irene,
I'm so sorry that I am just now writing you back. I just got out of the hospital tonight. I had another bowel blockage that thank God was dealt with, without another surgery for me.
I imagine you are scared to death! I know what you mean about the wait, it's scary and most doctors just don't understand. I will be praying for answers for you and that something good will make it possible for you to get that testing.
The day before I got put into the hospital, my adrenal gland tumor results came back with no changes my gastro said.
However.... I told her I wasn't comfortable with that result. I asked her about seeing an endocrinologist about all of my ongoing symptoms? Her answer was absolutely you should. Matter of fact, she went on to tell me that the thyroid blood tests my regular doctor had been giving me, wouldn't diagnose me with any thyroid diseases! She recommended me to ask the endo doctor for something called a thyroid scan. Hmm interesting, eh?
So I ask her to refer me to a good one, she tells me she can't, that my regular doctor has to. She tells me to be careful to not upset my regular doctor, by sounding bossy about sending me to an endo doctor. My jaw about dropped. She said doctors dont like it to seem like we are telling them how to do their job.
Ummmm, okay?! Is this our body, our lives they are playing with or theirs? It's mine and yours, and I'm going to start acting like it.
I will be seeing my regular doctor this week, I will be requesting a referral. My gastro told me the endo would deal with my diabetes and everything. It's crazy why I've never been sent to an endo in the first place. It's really upsetting.
I'm going to be praying for answers for both of us. Until then, you hang in there, and stand your ground too. Hugs
LoisCollis irene64333
Posted
Also, I went through menopause when I was 39, and they couldn't tell me why. This dawned on me tonight. They found that tumor around the same time, but just kept saying it was on my kidney and nothing to worry about. Nothing to worry about huh? Its really upsetting for me.
irene64333 LoisCollis
Posted
Hello there, hope you are feeling good. Sorry for not writing you back. I was not in a shape to write. So I had my pet ct done. It showed the same adrenal nodule which is hypermetabolic. It can be seen with both bening ang malignant etiologies. Doctors didn't even call me. And trust me they know what I'm going through. I don't understand all these tests can't see for sure. May be because of size it's hard to say. I don't want to wait I want this thing out asap. Thank you for praying. I will do the same for you. Let hope for the best. Let you know as soon as I know something myself ))
LoisCollis irene64333
Posted
Hi Irene,
Sorry I am just now writing you back. I've been sick and dealing with a lot. I finally had my first appointment today with the Endo. After going over my history : previous cts etc, he told me that I don't have just one nodule but a few and they are on my left adrenal gland. He will be running different tests including MRI, which I've never had.
Upon further inspection, he found that my thyroid is enlarged. He is going to do a thyroid scan, blood work etc.
When I told him I went through menopause 10 years ago when I was 39 he could not believe doctors had not tried to figure out why. He said he doesn't think it was menopause. He brought up hysterectomy, not sure what will happen there.
This doctor really listened to me. He doing other testing, I just can't remember them all. Because I've been having bladder issues, he's doing 24 hour unrine test.
I'm so happy to finally be getting some answers. I hope this finds you feeling better. Thank you everyone for the feedback, I truly appreciate it.
I'll keep everyone informed. God bless!xoxo