Hi there all,
Just wondering if anyone else has had any problems with circulation or blood clots? I've had extensive pulmonary embolisms and a dvt about a year ago and now my legs and feet are turning purple and hurting whenever I sit down. It's weird. Anyone else had this from sjs or other autoimmune d/o? Also anyone ever had thyroid symptoms but a normal tsh? I'm wondering it is possible to have a messed up thyroid and not have it picked up on a blood test.
thanks,
-Dawn
sjs, cidp, lyme pcos
Hi Dawn,
Have you been tested for thrombophilia--clotting disorders, such as Factor V Leiden, Protein C, Protein S, antithrombin, prothrombin, antiphospholipid, etc.?? I don't have a personal history, but recently had the full workup due to family history. I've been evaluated for both PE and DVT due to chest and leg pains--everything was fine for me, but the whole ordeal (especially ruling out PE) was pretty scary. You sure sound like you've been through a lot. If it's not any of the things listed above, have your docs suggested other possible causes?
With your history, you've likely come across this site, but I wanted to share it with you just in case you hadn't:
http://www.stoptheclot.org/
I don't have medical training, but with your significant history and current symptoms, I would not hesitate to notify my doctor. Just my opinion, though.
Regarding thyroid/TSH--yep, me too with symptoms of hypothyroidism, but normal TSH for sure, and I think T4 was normal as well. I'm going to ask my rheumy about it at my next visit.
Regards,
Shell
Hi Dawn,
Let me also welcome you to the SJS World! Please do look around as there are tons of topics and oodles of information!
I am not in the medical field, past, present, and I didn't sleep in a Holiday Express last night either ;), but I have Factor Five Leiden, but not had any clots (not yet anyway), and I don't have any other clotting issues with it (Proteins S, C, antithrombin, prothrombin, antiphospholipid among others). Are your clots due to a genetic disorder or is it something else? Has your hematologist said what yet?
I noticed that you're still having problems with your blood vessels, can you go for a second opinion by chance? Are you near a major medical facility or a medical school maybe? That's were a lot of the cutting edge doctors tend to be.
I have thyroid issues too, and my TSH never went above the "normal" range of the local lab. I think the highest mine ever got was 4.96 or so and the lab range was .05-5.50. After several months, I finally got to see the endo and was put on Synthroid that day, and I've been on it (Levoxyl now a days) since.
Again, welcome, and I hope that you start feeling better soon!
Take care -
Patze