New Here - Possible Pots

[fitnesskelly]

Hi everyone,

My doc suggested that I might have POTS. Between symptoms and some info about how low my resting heart rate is, how I get dizzy upon standing and how I used to be an athlete that was left injured and unable to perform anywhere close to the level I used to perform athletically, she felt strongly that it might be POTS. She has asked me to try and do some exercise daily and monitor. I report back next week and I suspect she will order the tilt table test based on the result (still low BP, BP drops upon standing, other symptoms).

The one thing I have found to help more than anything is the sodium intake...however, I'm really limited on how much I can take in. I use the Real Salt brand and I struggle with even 1/2 tsp of salt a day. The day following the salt intake, I wake with some pretty good bags under my eyes and I have diarrhea (sorry for the grossness). Does it take time to build up the body for a higher sodium intake? Or perhaps the Real Salt brand doesn't work for me (it's a sea salt product)? I should add that most of the time, I make my own food from fresh ingredients, so any salt in the food comes from salting while cooking. I rarely eat out or eat anything considered "processed".

As far as when this all started...I'm not sure. I've had pancreatitis on and off since age 20. Doctors never determined a cause. In my late 20's, doctors started expressing concern about my heart (palpitations...worried it could be Afib). In my early 30's, I was hospitalized with a severe kidney infection, picked up pneumonia in the hospital, also had a bad gallbladder. It was in the hospital that my low heart rate was noted. 3.5 years ago, I was working out in a competitive manner and afterwards suffered an injury that caused both arms to swell. I never really recovered and since have felt worse and symptoms have piled on.

I have some symptoms that don't seem to fit POTS (perhaps I have an underlying problem, but no one can figure it out). I'd be interested to hear if anyone else has any of these symptoms:
-I bruise really easy and the bruises don't go away - I have had one on my leg for a year now.

-My thyroid keeps testing slow, but I went through the whole thyroid treatment with natural thyroid meds and we never found a dose that worked for me. I only got worse on the meds. The endocrinologist says something else is driving the thyroid to give a false result.
-I have a lot of trouble staying asleep. I wake every night around 2, and struggle to fall back asleep. My adrenals have tested fine and I'm not having blood sugar problems. I can't even sleep without earplugs.
-Most of my blood tests look fine...no autoimmune, tests for Lyme were inconclusive (about 1 year of antibiotics to treat and they didn't help). Ferritin a little high, but it doesn't appear I have Hemochromatosis. My understanding is that many with POTS have low ferritin.
-No family history of anything OTHER THAN my mom seems to have the same low BP and low resting HR. Can POTS be hereditary? She's never described being dizzy when she stands.

Any tips, help, advice is appreciated. Nice to virtually meet you all!
-Kelly

[fitnesskelly]

I also really chemical/smell sensitive...I haven't seen that listed as a POTS symptom either.

[MomtoGiuliana]

Welcome to the forum.

Is your doctor referring you to a specialist--or is s/he a specialist? Generally it's very helpful to be diagnosed and seea specialists for POTS or related conditions.

As far as thyroid, I can just say that I have Hashimoto's. The two conditions (POTS and Hashimoto's) seem to interact. they both pretty much showed up at the same time and when my thyroid levels are off my POTS is worse.

As far as easy bruising there are of course many possible causes for that but I will just mention that people with Ehlers Danlos Syndrome tend to bruise easily and also may have autonomic dysfunction. A geneticist with expertise in EDS would have to evaluate a patient for that.

Many of us with dysautonomia struggle with sleep issues.

I hope you find some answers soon and better health. Glad you found DINET!

[navyblue]

The bruising - is your platelet count okay?

[fitnesskelly]

The bruising - is your platelet count okay?

Platelets are in range at 185. Looks to be on the lower end of the range, but not at the bottom.

[fitnesskelly]

Welcome to the forum.

Is your doctor referring you to a specialist--or is s/he a specialist? Generally it's very helpful to be diagnosed and seea specialists for POTS or related conditions.

As far as thyroid, I can just say that I have Hashimoto's. The two conditions (POTS and Hashimoto's) seem to interact. they both pretty much showed up at the same time and when my thyroid levels are off my POTS is worse.

As far as easy bruising there are of course many possible causes for that but I will just mention that people with Ehlers Danlos Syndrome tend to bruise easily and also may have autonomic dysfunction. A geneticist with expertise in EDS would have to evaluate a patient for that.

Many of us with dysautonomia struggle with sleep issues.

I hope you find some answers soon and better health. Glad you found DINET!

Definitely not Hashimotos. I think one doc found that fact to be unbelievable, because he insisted I had it anyway. I saw the Endo today and he said I probably had or have an inflamed thyroid from something else.

The doc who suspects POTS is actually an infectious disease doc. She seemed to know a lot about it (makes sense since it comes with the ID territory). I will ask about EDS. I have wondered about EDS, but when I read about it, I don't feel strongly that I match. Except for elbows, my joints aren't hypermobile.

[Katybug]

Hi fitnesskelly,

Sounds basic, but is the salt you're using iodized? The lack of iodine in a diet can cause low thyroid readings and is easily fixed. My mom and sister have Hashimoto's so my endocrinologist made sure I eat iodized salt.

As MomtoGiuliana said, EDS patients tend to bruise easily and EDS can be an underlying cause of POTS. One of my docs also said they are finding a higher existence of coagulability issues in EDS patients. I have been having a hematology work up recently, and I have all kinds of odd blood tests coming up, notably the PAI 4G homozygous mutation and vonWildebrand's Type 2B. I also have fluctuations in my Factor VIII and slightly but chronically low Ig and IgG and IgG sub 1. I am awaiting an appointment with a coagulability specialist as my hematologist declared my bloodwork "top 5 weirdest she's ever seen." Woohoo!

If you want more info on EDS, a good resource is www.ednf.org. If you want more information on any of the hematology, send me a PM.

[SarahA33]

Hi Kelly and welcome to dinet,

You mentioned a high ferritin level, I'm guessing your hemoglobin/iron is normal? I'd suggest having your TIBC and hematocrit checked if you haven't already, also maybe it could be helpful to bring in a hematologist even just for a consult. Oh, also is your vitamin d level been checked recently.. That can also cause ferritin levels to go up and down. I'm battling unexplained anemia, high wbc, and elevated platelets, among some other things. It is really scary when your blood work comes back with abnormalities, I'm wishing you the best of luck.

Sounds like your primary is headed in the right direction with the tilt, a heart rate monitor might be useful too especially if your feeling palpitations. That way you can record an episode.

Sarah

[fitnesskelly]

I don't think that salt has a significant amount of iodine, but I take an Iodoral supplement every day. I do think that helps me! I also take 2k - 4k IU of Vitamin D daily. Vitamin D level was over 60 when last checked.

Thanks for the link on EDS. I spent a long time reading the info on the site and I tested the joints that are tested for EDS and I am hypermobile on 5 of the 9 joints (not sure about my knees, I feel like I need help testing those, but they lock out easy and pop/hurt a lot, so maybe 6-7 joints). I will talk to the doc about EDS.

Funny you (Katybug) mention coagubility - the last time my sed rate was checked, it was almost 0. The doc said that a sed rate that low isn't good because it shows my blood wants to clot too much.

The Endo is referring me to a hematologist for the possibility of hemochromatosis. Ferritin has been elevated all 3 times tested (in the hundreds, not thousands). This last time, TS% was 30, but the time before it was 45%. I don't have the common HH genes, but I do have 2 copies of the gene for another form of hemochromatosis.

Thanks again for all the replies!