Another piece of the puzzle

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here
jfindley
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Posts: 72
Joined: Sun Jun 21, 2009 09:02 pm

Re : Another piece of the puzzle

Postby jfindley » Mon Nov 09, 2009 07:15 pm

Hi Kristen,
I am so sorry for what you have been through. I can't imagine the pain you must be experiencing. Welcome to the Forum. It has helped me so much to make sense of what happened to me. As far as the adrenal tumor, I would strongly suggest you get copies of your medical records from your pregnancy and any testing you have had done since in regards to the tumor. Try to find out the exact values of your catecholemines, specifically your epinephrines and metanephrines. Right after my 26 week pregnancy, one value was elevated and the other was not, but it was enough for my docs to strongly push the surgery to get it out. I am sure you have ready plenty about pheos, but they are very very dangerous and from my experience, nearly took my life and my childs. My tumor was active off and on before and after my pregnancy, but during my pregnancy, it was out of control. My BP started climbing very early in my preg., around 16 weeks, and I started meds then. Knowing what I know now, even if the tumor was inactive, I would want it out just to elimiate any possiblity that it could effect a future pregnancy. In fact, I am getting my thryroid out in two days for the same reason. I have a seemingly benign tumor on it, but my peri, ob and surgeon say to get rid of it now, before I get pregnant again, just to reduce all possible underlying conditions and becuase pregnancy commonly aggravates otherwise benign or inactive tumors. Do you know how big your is? Have they checked your thryoid and pituitary? I ask because there is a condition called Multiple Endocrine Neuroplaisia that is related to having a Pheo. The surgery to remove the pheo is pretty serious and risky. YOu will take a 1month course of alpha and beta blockers first to be sure the tumor is "de-activated". Be sure to get a surgeon with experience removing pheos. I was ICU for two days after just to make sure everything was ok. They are especially dangerous during surgery. Please feel free to email me any questions about this. I have a lot of info on pheo and hellp etc. Glad you foudn the forum.

mannysmommy
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Posts: 14
Joined: Mon Nov 09, 2009 11:17 am

Re : Another piece of the puzzle

Postby mannysmommy » Mon Nov 09, 2009 03:36 pm

I saw that you had an adrenal tumor and had a few questions for you. my bp spiked really high on my 20th week and put me on meds for it. During my second hospital stay they did an MRI and found an adrenal tumor. At first they thought it was an Pheo and now after a year they are saying that it is an inactive tumor yet my pressures still aren't stable . They don't want to remove the tumor because is inactive yet i don't know. What would your thought on this would be? Just hopeing that maybe your doctor had a little more info then the ones that i saw? just looking for some reassurance i guess.

jfindley
Registered User
Posts: 72
Joined: Sun Jun 21, 2009 09:02 pm

Another piece of the puzzle

Postby jfindley » Sun Oct 04, 2009 01:40 pm

I have been very nervous that my docs may have been entirety attributing my HELLP to my adrenal tumor (now removed) and not exploring the other possible underlying conditions so I went to see a hematologist to be sure that I am tested for clotting disorders etc. The results revealed a very low immunegammaglobulin(IGG). I am going to be seen next by an immunologist, but has anyone heard of this before in relation to HELLP? I have not found much on this in my research.


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