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I had a TAH/BSO in January 2010 and have been on Vivelle patch since. My surgeon consulted with a hematologist prior to surgery to make sure the Vivelle was okay to take since I am heterozygous for FVL (Factor Five Leiden gene mutation) which makes me more susceptible to blood clots.
Well, my family doctor just read my charts for the first time since surgery and FREAKED OUT that my surgeon had me on ANY type of hormone replacement with my FVL condition. She is sending me to a new hematologist this coming week.
My question to you all is this: What the heck do I do if I cannot take synthetic hormones? Will not having any estrogen at all kill me? I'm seriously lost right now and frustrated as can be! I have been off my Vivelle patch for 4 days now and feel sad and teary eyed and have a whopper of a headache!
My GYN suggested acupuncture and said it can help. I haven't tried it myself. So far I haven't gotten info on what to do without ovaries that doesn't involve hormones. I know for some symptoms antidepressants can help, and clonidine might help hot flashes. I'm interested in anything that someone else knows or uses.
Check out Women to Women on the web. They have a non- HRT program based on diet and supplements to re-establish balance even after hysto! I tried it out for a few weeks before surgery and was feeling better with just subtle adjustments. Have to wait 'til end of this week (1 week post) to resume the supplements, the diet part is a readjustment, but then again aren't all diets!
Don't take any natural supplements. My husband and 2 kids have FVL. When we first found out the hemo told use to avoid all supplements until approved. I'm sorry you're going through all this. I'd be interested in hearing about your FVL story if you are willing to share. Take care and heal well! Heather
i'm also FVL, and i was told that any and all hormones are not a good idea, but especially estrogen. estrogen ups the risk of clots (that's why birth control pills, for example, say you shouldn't take them if you have a history of clots).
i'd be interested to see what your doctors tell you, though. keep us posted, please.
Okay ladies here is what happened at my hematology appointment:
The dr. tested me for a plethora of other blood clotting conditions similar to FVL just to make sure I didn't have multiple clotting tendancies. Tests came back negative so that's good. She said that with my long history of being on birth control pills with no issue of clotting (back before I tested positive for FVL), I should be fine on the Vivelle Dot patch (I take the .01mcg changing it 2x/week). There are still risks, she said, but there are also risks with going hormone free (osteoporosis, etc.)
She also recommended I take a baby aspirin daily (81mg) to help further reduce my risk of blood clotting. Also she said it was very important to keep my fit figure, and make sure to never start smoking. Being young (31), not overweight and a non-smoker, she said, would greatly decrease my risk of blood clotting while on the HRT. Most of us know these factors all contribute to heart attack, stroke and clots, but having FVL, even heterozygous, magnifies all these conditions.
Take it easy out there & Hugs to everyone!