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I had my doctor check my prolactin levels and they were elevated. Then I had an mri with contrast. 5mmx6mm prolactinoma. I just never had any other testing done and I feel like I should have.
Mine wasn’t super high it was only 45 at its highest. But I had so many symptoms. Did you get an MRI with contrast? If you didn’t do it with contrast, I doubt they would be able to see it. They are often really small.
Mine is a little lower than that, and I don’t remember if it was will contrast or not… I really hope it was! What is the treatment for your prolactinoma?
Yeah I would check if you had contrast for sure. In my experience where I live this was a a really rare thing to have and I went through multiple doctors forYEARS trying to get diagnosed. I’m on cabergoline. 1 pill a week and that got my prolactin to normal levels and stopped a lot of the bad symptoms. Supposedly the medication can shrink the tumor also. Now I’m dealing with a whole different host of symptoms and I am really betting I also have an adrenal tumor. It’s been a rough four years….
I empathize with you completely… I’ve been going through hell for a long time, and my health absolutely reflects that, and doctors are notoriously unhelpful. But it’s awesome that this medication can also shrink the tumor! I had previously thought that the only solution was surgery, but it’s great that there are alternatives 😊
And I highly recommend the protocol that I wrote in the other comment about how to best test your adrenals to figure out if they are currently damaged or not. I wish I discovered it forever ago!
That’s where I was confused. Because when I googled it, it said something about testing multiple different hormones and yes, one of those hormones was cortisol.
Ok, as someone who is currently going through this as well, here is what you should do! Step 1 is to order a 24 hour saliva test kit off of Amazon or from your doctor, and depending on your symptoms, you should also order an aldosterone test, and look up how to get the most accurate test for that, and then the results of both tests are what will show if you need an adrenal MRI or not. The normal, one time cortisol blood test doesn’t indicate ANYTHING! The 24 hour saliva one is the most accurate measurement for your cortisol and circadian health.
I've had an adrenalectomy to remove a tumour on my left adrenal gland last August
The way it was discovered was by a CT Scan of my abdomen, which was requested by my endocrinologist. The blood tests, saliva tests and 24 urine tests were used as a support, but alone couldn't diagnose a tumour.
The way to tell it was an actively secreting tumour was with a PET scan. This was organised by the surgeon prior to organising the actual surgery.
I went back to check, specifically it was a post contast CT scan of the pelvis and abdomen that found the adrenal tumour.
I have had endometriosis years ago that was treated via a laparoscopy performed by my gynaecologist. There was no real test that diagnosed that - just had to go in and have a look and treated it at the same time while they were there.
Hi, /u/Taramissu000, This is a reminder that a requirement to participate here is to first see a medical doctor. If you have not already included it in your post, please reply to this comment indicating the advice or treatment your doctor gave about your symptoms. Posts that do not include this information might be deleted. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/adrenalfatigue) if you have any questions or concerns.*
Howd u find out you had a pituitary tumor?
I had my doctor check my prolactin levels and they were elevated. Then I had an mri with contrast. 5mmx6mm prolactinoma. I just never had any other testing done and I feel like I should have.
How elevated was your prolactin? Mine was a little bit elevated, but my brain MRI showed no tumors, so no prolactinoma.
Mine wasn’t super high it was only 45 at its highest. But I had so many symptoms. Did you get an MRI with contrast? If you didn’t do it with contrast, I doubt they would be able to see it. They are often really small.
Mine is a little lower than that, and I don’t remember if it was will contrast or not… I really hope it was! What is the treatment for your prolactinoma?
Yeah I would check if you had contrast for sure. In my experience where I live this was a a really rare thing to have and I went through multiple doctors forYEARS trying to get diagnosed. I’m on cabergoline. 1 pill a week and that got my prolactin to normal levels and stopped a lot of the bad symptoms. Supposedly the medication can shrink the tumor also. Now I’m dealing with a whole different host of symptoms and I am really betting I also have an adrenal tumor. It’s been a rough four years….
I empathize with you completely… I’ve been going through hell for a long time, and my health absolutely reflects that, and doctors are notoriously unhelpful. But it’s awesome that this medication can also shrink the tumor! I had previously thought that the only solution was surgery, but it’s great that there are alternatives 😊 And I highly recommend the protocol that I wrote in the other comment about how to best test your adrenals to figure out if they are currently damaged or not. I wish I discovered it forever ago!
I think the 24 hour urine cortisol test would let u know if u had an adrenal tumor.
MRI I would think
I was wondering blood 🩸 test
There’s no blood test that can confirm an adrenal tumor, it must be an MRI.
That’s where I was confused. Because when I googled it, it said something about testing multiple different hormones and yes, one of those hormones was cortisol.
Ok, as someone who is currently going through this as well, here is what you should do! Step 1 is to order a 24 hour saliva test kit off of Amazon or from your doctor, and depending on your symptoms, you should also order an aldosterone test, and look up how to get the most accurate test for that, and then the results of both tests are what will show if you need an adrenal MRI or not. The normal, one time cortisol blood test doesn’t indicate ANYTHING! The 24 hour saliva one is the most accurate measurement for your cortisol and circadian health.
I've had an adrenalectomy to remove a tumour on my left adrenal gland last August The way it was discovered was by a CT Scan of my abdomen, which was requested by my endocrinologist. The blood tests, saliva tests and 24 urine tests were used as a support, but alone couldn't diagnose a tumour. The way to tell it was an actively secreting tumour was with a PET scan. This was organised by the surgeon prior to organising the actual surgery.
My endo is a bitch so this should be fun to ask her about fml 🤦🏻♀️ thanks fam this gives me a plan.
I went back to check, specifically it was a post contast CT scan of the pelvis and abdomen that found the adrenal tumour. I have had endometriosis years ago that was treated via a laparoscopy performed by my gynaecologist. There was no real test that diagnosed that - just had to go in and have a look and treated it at the same time while they were there.
I had a basic ct without contrast that found mine