heiseygirl

After being sick with pots for 10 years I am considered in remission. I am not back to where I was but so much better. It came when I changed my thyroid med from synthroid to armour thyroid. I begged Drs for years to let me change my med but none would. Will not even get into how i got the other med but to say I had to go to Great Britian for it. My question is. Is this remission temporary or permanent. Steph

i also have angina sometimes so bad I can't hardly take it. My cardiologist can't figure out why neither as all my tests look normal. Would love to get an answer.

Has anyone tried Royal Maca an herb and if so did it help. I have Pots underactive thyroid and i had a complete hysterectomy at 32 because of multiple cysts and very heavy bleeding which we have come to know came from the blood disorder Von Wilebrands. I always do better on vitamins herbs and natural help than meds.

Does anyone have trouble with falling and dropping things? I am doing both alot lately. When I first get up it looks like I have been drinking alcohol. I have had pots and nero cardogenic syncopy since summer of 2001 although I have only been fully diagonosed with this about 2 years ago.

i have had pots since 2001 which wasnt diagnosed totally till last year i have low serotonin and i have Von wilebrands a blood problem where my blood doesn't clot properly. I also have alot of trouble with blood pooling. Ironically when having any type of surgery i need a special iv of ddavp to helpwith my bleeding problem

i just had a bunch of blood tests for my pots to try and find an underlying cause. My albumun was high also but the dr didnt seem concerned.

Cool. I'm similar and even had "High-A" while on fludro, which places me in overhydrated zone. I do recall reading that POTS/OI has been called "Idiopathic Dehydration" in the past... amongst it's many other names.

Firewatcher: Ha, you caught me. I AM indeed off my med (fludrocortisone) again, pending testing! Thankfully I'm continuing a decent run of milder symptoms... other than the nagging flashbacks of space ship travel Just kidding of course! As you already know, we don't use the slow saucers or eggs of yestermillenia... but for some reason we still get that darn orthostatic intolerance deal. Go figure! "V". Well, yes... that is a start. Just the next in a series of propaganda to recondition the humans to our presence prior to proposing our real purpose. We have come to exchange our knowledge of infinite clean energy and nearly indefinite longevity for one simple thing... we can't solve this darn orthostatic business and we need your civilization's detailed knowledge. Please notify us when you have this solved and we will have a deal! Otherwise, I'm afraid we will be contacting all your Human Resources departments which you have so conveniently set up for us to "harvest". Na no, na no.

when i first got sick in 2001 the specialist at hershey med said i t was my thyroid. took me off my meds put me back on a lower dose and then said you are okay which i was not. A couple of years later out of frustration i quit my synthyroid and did really well for over a year. Then my numbers got high and i went back on synthroid again. this june i crashed and have not come around completely yet. I am now taking iodine and a thyroid adrenal complex supplement and feeling better than I have for years. Have an appointment with Dr. Khrunna on the 17th. none of my drs would give me other thyroid meds but this combo seems to help. keeping my fingers crossed.

The adrenals and the thyroid are separate but intertwined. I think when one is sick the body tends to up cortisol in response to the "stress" (and presumably plenty of other things) so long as it can (meaning so long as you don't have Addison's or something). That could explain a bit of a compounding effect and sense that your normal thyroid dose is too much... though again, adrenals isn't same as thyroid, just part of same interconnected system.

I don't know if there's a link between thyroid troubles & POTS but there is the possibility that a more general auto-immune thing is zapping the thyroid and creating a neuropathy. Stuff like Sjogren's and Lupus and who knows what else can be rather generalized like that and they are notoriously long term diagnoses. I guess that's a remote possibility.

i always have trouble after i eat. Shortness of breath palpatations. Also extreme tiredness.

having alot of blood and urine tests done to find out what the underlying cause to my pots is. What do high cortisol counts mean have any of you been tested for lyme disease

This was very interesting.

Early on the road to figuring out my problem (back in 1994) my doctor did test me for heavy metal.

I would be a little cautious since the doctor doing this research also owns the company that makes the test....posible conflict?

It would be interesting if several of us ordered the kit and see what happens.

Bella Mia when were you tested for Von Wilebrands? I was tested about 4-5 years ago by my hematologist and it came back that I have it. The interesting thing about Von Wilebrands is that I need to have an iv of ddavp when ever I have a procedure done. I would check into getting tested again as there was no problem finding out that I had it.

I can't find the article either but I'm assuming it may have to do with low blood volume and being anemic. I was sick long before my periods wich started in my teens with migranes severe heavy bleeding all my life even when I foolishly went on the pill. I had a ectopic preg. where I was told after that I nearly died on the table due to major loss of blood, pie wedge taken of ovary, and tube bust and taken out. Was told I would most likely never have children.

Several years of heavy periods later and surgeries to try to fix the problem as I now had endrometriosis and a belly full of adheasions. Finally 6 years later I was blessed with a bloody birth thinking that all woman must bleed when giving birth ad then the doctor moved in and took my son by forceps as my placenta had torn. I then has 3 more births all very close together as the doctors didn't give me any promises that I would be able to continue to have more.

Inbetween all of this I found out that I most likely have Von Willandbrand's as I'm a bleeder but insurance stopped testing after about 8 months due to catching it in lab work is tricky. Going on history alone the doctors felt I have it.

Used birth control pills as allergies to everything else. I wish I never took them!!!!!

I started in the spring of 08 to have post meno bleeding so bad that my iron blood level drooped to 4 and I now had pre cancerous cells. I was put on hormones that made my pots WORSE than ever... I also had another cyst. I needed surgery and no one wanted to really touch me as my mom at my age had problems waking up from antheasia and they thought she was going to die and called us all in to see her when we were kids.

So I had a deep D and C and everything looked ok for now. The cyst had dissapeared and is now back again along with the bleeding. I just had another biospy that came back normal. The ultrasound was almost normal although the linning is building up agin. This time we think it's the florinef. If I start to bleed out of control I need to get to the doctor otherwise, I'm safe again till next year from the cancer cells.

i always had trouble with my periods started in 6th grade bled so bad my mom had to call the dr. I do have a bleeding disorder Von Wilebrands similar to hemophilac. Always had very bad cramps. Had my 1st daughter at 19. Had a cyst on my ovary removed @ age 25. Grew back to the size of a grapefruit with in a year. Had that ovary removed. Within 6 months i was pregnant with twins. A boy and a girl with one ovary. 4 years later had to have a complete hysterectomy at age 32. My blood count went down to 6.My other ovary was covered in cysts. We only found out about the bleeding disorder during hospitalization the 2 nd time from what we know now is pots. Knowing this might have saved me a lot of problems. My periods were extremely painfull also and i had a lot of clotting.

i have been on thyroid meds for years synthroid and the generic. I have found that when i dont take them my pots gets better. I went almost a year without them and did pretty well untill my numbers went to high and i needed to go back on. the first specialist that diagnosed me with pots thought the thyroid meds were causing my pots He took me off for a short while then put me back on a lower dose and said you are better..... not!I want to try armour thyroud but all the docs wont let me try it. I always do better on natural things. Very frustated

I've tried synthetic & Armour for Hashimoto's but I couldn't tolerate either. Armour messed up my vision but doc is not believing that Armour was the cause. He said he's never had anyone that had a problem with it. Other than the visual problems I did ok with it. Start with a low dose is you're worried you might have a problem. Good luck!

Of those of you with our problems, how many are on thyroid meds and what kind do you take. Any on Armour thyroid and how do they work for you?

i always feel better later in the day. Even before i got sick. I usually always feel better once the sun goes down. my husband says i am like a vampire haha

I have Von Wilebrands. This was found out during 1 of my hospital visits when I first got sick with what we now know is pots. It is a hereditary bleeding disorder which ironically no one in my family has. I have had it all my life as I have severe bleeding problems my whole life which were not diagnosed till about 2004. The interesting thing is that I get ivs of ddavp when ever i have any surgieries or invasive procedures done. I see that alot of you use ddavp as a med. is there a connection?

i did not take any thyroid meds for almost a year and had very little pots my numbers eventually got too high and had to go back on them about 6 months into them pots reared its ugly head again. My original specialist that diagnosed pots felt that the thyroid meds were causing my problems. took me off them then back on at a lower dose and said your betteer. not! See Dr. Khurrana in sept after he did testing to confirm pots. did pass the sweat test which is good. He said we will look over my blood tests. Every since i got sick in 2001 have had a high bilirubum count.. I also have Von Wilebrands a bleeding disorder. Very Frustated

Heiseygirl,

I believe it "aggravates" POTS in the sense that our systems are very sensitive to any changes, including changes in the dosing of synthroid. For me, when I increase the dose, I can expect a few weeks of tachy before I adjust. It took me years to learn this about myself.

Still, the alternative is worse. I know from experience. Being hypo aggravates POTS too. Add to that, mental dullness, extreme fatigue and it's difficult.

I do not have a choice. Whatever effect the synthroid has, I must adjust to it. I need the hormone.

Like I said in a previous post, I will now rely more on my TSH rather than on what I feel. What I feel changes daily and changes also when adjusting meds. The big questions for me now are, at what range should I keep my TSH and how frequently to test? Many on here have said below 2 or 1 - 2 is where their TSH is. One of my endos is okay with my 2.5. I will speak to my other one and get her opinion.

What, exactly, are you concerned about with your thyroid issue and your POTS diagnosis?

do any of you feel that your thyroid med aggrivate your pots. i want to go on other meds but all the docs are afraid to change mine. Always have less symptoms of pots when not taking thyroid meds. had testing with dr.khranna in maryland to confirm pots go back in september to start figuring out what is causing it or what to do.

Has anyone had trouble with their pots flarring up when taking thyroid meds. I had Pots real bad no relief . Stopped taking my thyroid meds for over a year and did wonderful had 3-4 months at a time that were good and the bad times didn't last very long. Have been back on my thyroid med for about a year now and starting to get real bad again and the chest pain and dizzness and shortness of breath are back. Anyone else have this and what did you use for your thyroid med. My throid gets real bad when not on meds for it.

I have always been a worrier too. I was on mild nerve medicine as a young girl. My Dr. when I was in my early 20's said that my worry was going to get me some day. I guess he was right. heiseygirl