Please help?

[SheriLynn1980]

I've been sick for about 6 months. Pcp mentioned pots but I think it's a endocrine issue. History of reactive hypoglycemia since 16 (34 now)  asthma and newfound allergies. Symptoms are : extreme fatigue, Vertigo, cold all the time, irritability, shaking, brain fog, losing periods of time, falling asleep (did this driving), not feeling rested, short of breath, weight gain, dizzy, bp fluctuates usually low reading like 100/68 but some higher, as high as 150/92, fast heart rate usually in 90 or 120 range resting.  Taking phenterimine helped me feel better.  Recently had labs,  b12 191 -  I've took a shot a week for a month now a shot a month, no difference. Glucose 93, sodium 144,potassium 3.8,wbc 5.8 rbc 4.27, a1c 5.2 free t3 3.4,free t4 1.12
Cortrosyn stim test
9.64 ug/dL at 8:30 am
24.12 ug/dL at 9:06
28.35 ug/dL at 9:43
No ranges are listed. My prolactin and acth hasn't come back yet. Please give insight, I'm having surgery Tuesday and desperately need answers.  Thank you

[Heiferly]

There are some other things you can do, short of rx medications, to help with POTS. Compression garments, particularly compression stockings (thigh or waist high, at least 20-30 mmHg) and abdominal compression (Spanx are actually pretty helpful with this. Compression garments can help with blood pooling, and in that way improve POTS symptoms. As far as sodium and water-loading, the Cleveland Clinic recommends at least 5000mg/day of sodium and 3-4 liters/day of water. It's actually pretty tough to get that much salt in your diet: 5000mg of sodium is roughly 2 tsp of salt. One method is to put 2 tsp of salt in an empty salt shaker every morning, and make sure it's empty again before the next day. If you want more tips on increasing your sodium intake, let me know. Other things to consider to help with POTS are to increase the amount of exercise you get (contrary to everything your body is usually telling you in a POTS flare!), especially exercise for your legs. The leg muscles act as a "skeletal muscle pump" to decrease pooling in the legs and increase vascular return to the heart. Finally, be careful about extreme temperatures. Getting overheated and getting too cold can both worsen POTS symptoms. It's best to wear layers so you can put them on and take them off as needed to help your body temperature stay in a good range. The ambient temperature range that's supposed to be helpful for patients with dysautonomia is between 70 and 74 degrees. I know that seems like an awfully small margin of error, but take your own observations into account: depending on the type of POTS, some people thrive in temps a bit cooler than that, while others get symptom reduction in warmer temps. The guideline is an average, and holds true for the majority of POTS patients. Oh, and if you're having a lot of symptoms while bathing, try and get a chair in your shower to sit down while you shower; that can help with those symptoms considerably. Let me know any other questions you have. Hang in there!!

-Heiferly

[SheriLynn1980]

Thank you!  I was hoping to be able to go to Vanderbilt autonomic clinic but my insurance won't pay since it is out of ky. This kind of tired sure isn't normal lol. All my pcp could say was it could be addison's (ruled out no)   but she thinks pots is more likely and to up salt and water intake. Thank you so much

[Heiferly]

I very much empathize with your fatigue. That was one of my biggest early symptoms when I was diagnosed with POTS. I sometimes slept 20 or more hours/day! And was still tired ... Now, I have narcolepsy on top of my dysautonomia, but even so, the narcolepsy by itself (which I'd had for decades before getting dysautonomia) was never as bad as it was with autonomic dysfunction on top.  Make sure you mention the "excessive daytime sleepiness" (that's the medical term for it) to your neurologist. That's a clue that *something* is going on.

Don't feel hopeless if this first neuro doesn't sort it out for you. I saw probably 3-4 different neurologists plus a cardiologist (and his colleague for a second opinion he wanted) before I was given even a *tentative* diagnosis. Only several years later, after sending me to one of the big autonomic testing centers (Cleveland Clinic), did they consider my diagnosis set in stone. Getting a diagnosis with autonomic disorders is HARD, and you may have to see multiple different specialists for second, third, or fourth opinions before they're confident of what's going on with you.

Please feel free to continue to ask questions here and also vent here as needed as you navigate this process. I truly feel for you, as getting a diagnosis is a big hurdle, and a stressful one at that.

Take good care of yourself,
-Heiferly.

[SheriLynn1980]

Surgery went ok. I'm just so tired, even with no pain Meds i can't stay awake,  I'm sleeping all night plus 2 or 3 Naps several hours a piece.   Everything checked out well with the endo so now the neurologist is my last hope.  I'm assuming they will schedule a tilt table but I'm not sure. I just wanna know what is wrong....

[Heiferly]

POTS can be secondary to endocrine issues, so you may be looking at both, actually.

I'm not in a position of expertise to analyze those lab values even if you had the reference ranges (which are necessary to get any meaning from the results). You may want to call the lab where you had the test and ask for the reference ranges, and then possibly post your question in a patient community for endocrinology where they're more likely to know what it all means.

Are they planning a tilt table test to confirm the POTS diagnosis? How did your surgery go? I hope you are recovering well,
-Heiferly.