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Autoimmune Diseases | Last Active: Jan 29, 2022 | Replies (223)

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@johnwburns

No problem. Trying to untangle this but I can only take it so far.

So was POTS/dysautonomia ever given as a formal diagnosis and a treatment plan formulated? You emphasize your history with prednisone but mineralocorticoids are more of a foundation for POTS, true? The POTS diagnosis would be in the neurologist's wheelhouse.

How did the neurologist conclude that you have low cortisol in the context of an office visit? Something obvious like hyperpigmentation of sun exposed areas? Very low resting blood pressure? Major endocrinological illnesses like adrenal insufficiency will knock homeostasis off systemically. An endocrinologist is the one to sort that out, not a neurologist or rheumatologist.
http://www.dinet.org/index.php/information-resources/pots-place/pots-what-helps
http://emedicine.medscape.com/article/116467-clinical
What mage you aware of B6 deficiency and how did you confirm it?

I can't help going back to the fact that the med management is all over the place. You are take anti-hypertensives to drive your BP down, and prednisone which will drive it up.

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Replies to "No problem. Trying to untangle this but I can only take it so far. So was..."

DogMamaT | @dogmamat | Jul 27, 2016

So stepping through •B6 deficiciency was found by colleague in practice with my Primary care. I was having nerve pain every where-pins and needles, burning, bad leg pain, back pain, plus my falls. That is when I was prescribed the walker, lidocaine pain patches, and she ran blood work on my B vitamins. Only B6 was low-15 nanomoles and 20 is lower bound. I mentioned that to Neurologist and he cautioned watch out as you can get neuro symptoms from too much too. The PCP prescribed 100 Mg/day. •With both Calcium channel blocker and Beta blocker and Lasix, along with Prednisone, my heart is getting conflicting signals. Calcium blocked should trump all, addressing my bad Raynauds. Beta for headache prevention. Lasix for foot/ankle edema and prednisone for inflammation and now my adrenals too. Generally my BP stays low, like 100/60. Bit if I am in bad pain or with infection, it shoots up. The combination of all has to be impacting my balance, and maybe that's why it isn't explored more-but something has changed where I have now become imbalanced. •yes, I have to get down to 1 owner of my meds...and less (but the right ones) •Dysautonomia was diagnosed by a pain management doc in 2005. He ordered a tilt table study. My BP change was 30. When the change happened it felt like I had a huge volume pf knives stabbing my body. The pain doc shared his daughter had the illness so he knew the illness. So he told me get all the books I could, wear compression host and take salt tablets. Then he dismissed me as a patient...not anything else he could do. So there I was-no plan, told with exercise and good diet, literature said I would have 7 years to live. Later docs were skeptically/ignored. •the irony I saw was that mineralocorticoids help in balancing out the endocrine issues when there is ACTH depletion and ACTH helps in signaling adrenals to produce cortisol. To me it seems ironic and maybe that old diagnosis needs revisiting. I told my PCP and she didn't want to explore because a positive result could happen just with meds I am on...but doesn't that say we need meds reviewed, period? I am going to raise this with Neurologist... Thanks for talking through this, I appreciate.

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