circulation problems anyone else?

[lymeabean]

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

[Shell]

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

[Patze]

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