Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
So, my first DVT in 2005 was blamed on BC. I stopped all BC and didn't start again until 2009 when two different OB/GYNs convinced me that progesterin-only BC would be OK. I took it for five weeks and got a second DVT last February. No more homones, of any type, for me ... ever!
Then, in January of this year I get multiple bilateral PEs. I haven't had anything hormonal (well, medicine anyway ;-)) in almost a year and I had no symptoms of a DVT. Where did it come from? No one seems to know and we've all pretty much given up figuring it out ... almost.
I saw a pulmonologist a couple weeks ago and he threw out some ideas about how he thought the PEs and my BP problems are related. One theory he mentioned as being far-fetched and, although I don't remember the details, it had something to do with my adrenal gland.
A couple days after the appointment I was thinking it over and I kept thinking that there had been something else about my adrenal gland ... but what?? I went back through my records and found that my last CT scan had revealed a small growth (1 cm) on one of my adrenal glands. Only about 1-2 in a million of these are cancerous so they labeled it an "adrenal adenoma" and moved on. It was barely mentioned in the appointment I had after the CT.
But, I did some research on adrenal adenomas and found that some of them (about 20%) actually influence the adrenal gland and can cause fluctuations in some of the hormones in the body. The most common problems are with cortisol levels, but it some cases it can mess with ... you guessed it ... estrogen.
I feel like I might finally be onto something now! This could be the cause of the PEs in the first place! Also, it turns my entire health perspective on its head. What if the PEs aren't the problem? What if they are actually a *symptom* of the problem?
I"ve been doing more research online trying to find data I can take to my next appointment with the pulm. I'm really hoping that I've stumbled onto something concrete because maybe it will give me an idea how to heal myself better.
Anyone else out there have any experience with really off-the-wall clotting causes? Or with hormonal imbalances? Anything at all would be great!
Then, in January of this year I get multiple bilateral PEs. I haven't had anything hormonal (well, medicine anyway ;-)) in almost a year and I had no symptoms of a DVT. Where did it come from? No one seems to know and we've all pretty much given up figuring it out ... almost.
I saw a pulmonologist a couple weeks ago and he threw out some ideas about how he thought the PEs and my BP problems are related. One theory he mentioned as being far-fetched and, although I don't remember the details, it had something to do with my adrenal gland.
A couple days after the appointment I was thinking it over and I kept thinking that there had been something else about my adrenal gland ... but what?? I went back through my records and found that my last CT scan had revealed a small growth (1 cm) on one of my adrenal glands. Only about 1-2 in a million of these are cancerous so they labeled it an "adrenal adenoma" and moved on. It was barely mentioned in the appointment I had after the CT.
But, I did some research on adrenal adenomas and found that some of them (about 20%) actually influence the adrenal gland and can cause fluctuations in some of the hormones in the body. The most common problems are with cortisol levels, but it some cases it can mess with ... you guessed it ... estrogen.
I feel like I might finally be onto something now! This could be the cause of the PEs in the first place! Also, it turns my entire health perspective on its head. What if the PEs aren't the problem? What if they are actually a *symptom* of the problem?
I"ve been doing more research online trying to find data I can take to my next appointment with the pulm. I'm really hoping that I've stumbled onto something concrete because maybe it will give me an idea how to heal myself better.
Anyone else out there have any experience with really off-the-wall clotting causes? Or with hormonal imbalances? Anything at all would be great!
This doesn't answer your question I'm afraid but I thought I'd add my own bit about hormonal causes.
I got my first round of DVTs from a sprained ankle while taking Cyklokapron (tranexamic acid) then a second round sometime 2-4 weeks later when the Cyklokapron was replaced with an HRT called Provera. The doctors are divided as to whether the medications contributed to the DVT or not. Apparently, only superficial veins should only possibly be affected.
I've had a Mirena 5 weeks with no new clots, but am still on coumadin. I took birth control for 15 years and was a smoker and never had a problem, so it is difficult to say in my case if the hormonal treatments contributed or not. For me, the certain factors are the immobiliy caused by the sprain and being the wrong side of 40 years old. I am suspicious though of hormonal medications after 2 rounds of DVTs.
Your case if very different as your PE causes are now unknown and it also seems to certainly have been caused by hormones. I think it is a really good idea that you do more research and discuss your adrenal adenoma with your pulmonologist. I think PEs are the symptom of the problem because you must be clotting somehow and somewhere to have a PE as I understand it.
I have been out of the hospital for two weeks. I was put on BC to shrink an ovarian cyst. I am 45. I had been suffering from fatigue prior to the doctor finding the cyst. Well after 5 weeks of BC the cyst disappeared. I was thrilled. However, a month later I was in the hosptial with bilateral pulmonary embolisms.
The day before my trip to the hospital I went to my general doctor and he tested my cortisol levels. The day I got out of the hospital he called me and said they were double what they should be! While in the hospital I had a full abdomen scan with contrast and the radiologist noted that the adrenal gland was clear.
I am seeing an endocronologist and some other tests have come back high.
Your comments make me wonder if my adrenal problems are also related to the embolisms.
Please keep me posted and I will you too. I have more cortisol level testing done next week.
Please let me know what you find out. This could help solve this mystery for me too. Thank you for the information.
I wish you all the best