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Prothrombin Gene Mutation Prothrombin Gene Mutation

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  #1  
Unread 08-29-2007, 05:08 PM
Prothrombin Gene Mutation

Hi, Sisters!

I've been awaiting word from my hematologist on some genetic testing he did to try to determine the cause of my 2 1/2 week post-hyst. pulmonary emboli (every lobe of both lungs had at least one blood clot in it).

Talked to his nurse this afternoon who said the results are finally in but that I really needed to talk to the doc about them. She said that everything is normal except that I have something called a Prothrombin Gene Mutation. This is something that would make my blood more likely to clot -- so, HRT would be contraindicated.

She said that the doc would discuss with me the pros and cons of it and that it wasn't 100% ruled out, as far as she knew. But because I just survived what was really a life-threatening event (the emboli), I don't want to add to any risk of that happening again.

So, here I am in the No Ovaries - No Hormones Desert Oasis. I didn't plan to be here, with no offense intended to anyone who IS here, but I had weighed the pros and cons and decided HRT was what I wanted. Now it's not really an option anymore. I'm sad. I've been a basket case since my doc made me remove my Vivelle Dot after the emboli...mostly mood swings, anxiety, depression, and anger, much less so than hot flashes (I do take Paxil CR so maybe that's at least helping with the hot flashes...sure isn't doing diddly for the anxiety and depression anymore).

I'm reading up on everyone's suggestions on supplements -- evening primrose, black cohosh, flaxseed, natural vitamin E, etc etc., and not only do I not know what any of these do, I don't know if I can have them with a clotting disorder.

I'm so overwhelmed, and I feel more of a sense of loss that I can no longer have estrogen than I did in knowing that I can no longer have babies! How weird is that?!

Thank you to all who post here with helpful suggestions on how to deal with menopause without hormones. The info is all here, I just need to sift through it and decide (with my doctor's approval) what to do from here. If anyone else has this gene mutation, I'd really like to hear from you and maybe learn from your experience.


Becky
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  #2  
Unread 08-30-2007, 12:42 PM
Prothrombin Gene Mutation

I'm so sorry Becky. I know it is a lot to take in, first the hysterectomy, then the hormonal issues and now the clotting problem. I would be careful with supplements with your condition and make sure you contact your doctor before taking anything with a phytoestrogen effect such as soy and flaxseed, black cohosh. VItamin E, calcium and magnesium, fish oil supplements are some good supplements, as well as B vitamins. If your doctor okays it, a good B-complex supplement with at least 50 mg of B-6 will really help with your mood and nervous system. If you are still depressed, you may need to consider changing your antidepressant down the road.

On a positive note, I've known many women who have gone on to lead very happy, healthy lives after hysterectomy without taking any hormones so it can be done. It might be harder for some than others, but it's doeable. Try to avoid things that bring on hot flashes like caffeine, alcohol, and spicy foods.

For me, the depression is what always sent me back to hormones when I tried quitting them. I could deal with the rest of the symptoms. I just never had any luck tolerating antidepressants but if I had to I would take them. Effexor and Cymbalta are supposed to help with hot flashes.

I hope you feel better soon. Keep your chin up. HUGS!!!

Carol
  #3  
Unread 08-31-2007, 03:13 AM
Prothrombin Gene Mutation

Hello Becky:
I haven't posted in a long time. But I thought I'd see how my sista's were doing.
When I saw your post on Prothrombin mutagen gene...my mouth opened. You don't see that very often because it is rare.
My husband was diagnosed with it 7 years ago. He has multiple clots. He had several blood tests..they finally found out it was Prothrombin mutagen gene. They put him on Coumadin (a blood thinner.)
He continued to clot on Coumadin...so he's been on Lovenox injections. I can go on and on but he's doing well so far.
As for you...there's a reason your doctors are telling you to stop the horomes. Maybe with the increase hormones.. you are
at risk for clotting more. It is important you discuss with your doctor your medications/supplements and if there is a need to take medicine to thin your blood as my husband does.
I've had a total hysterectomy a few years ago ..no ovaries, no cervix...nada...they slapped a patch on me in the recovery room...but two months later I tore it off and have been dealing with the hotflashes since. It's uncomfortable at times...but I deal with it. Have about 4-5 hotflashes a day. I can handle it..annoying yes... but hey I'd rather go without hormones.
Well. stay well Becky and keep in contact with your doctor.

Julie
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