Would Like To Introduce Myself And ?????s

[sue1234]

I am a 47 y/o female, RN degree, but don't work(explained on the "what work do you do" post). I work from home in our new business. I have an 18 year history of thyroid problems, recently diagnosed with Hashimoto's. Don't take meds for it, as all meds make me HOT and my heart races. Two years ago I developed POTS, just out of the blue. Went to a few doctors, no help. Then a cardio did a TTT, and my HR shot up over the 30 points. Day to day, I can stand about 20 minutes(moving only!) before I feel like I'm gonna pass out. I feel the blood pooling, lightheaded, increased HR, and if it's hot, I start swelling in my hands. That brings me to the question-I was reading on this site about possible causes of POTS, and of course, my autoimmune hits me first as an idea, possibly with adrenal problem. I've had a stimulation test and passed, but still I wonder. The other thing is I was reading about the Mast Cell problem, with the histamine release. That sure all sounds like me-if I get the slightest bit hot(big trigger for me!), I start swelling and my lovely red, patchy arms and legs turn bright red. And, I NEVER get a cold! I haven't gotten a cold in about 10 years! I am the healthiest ill person I know! Anyone with mast cell part of this, and how did you find out?

[Mrs. Burschman]

Sue,

I have no idea, but I just wanted to welcome you to the forum. We're happy you found us (and as always, unhappy you had the need)!

My POTS seems to be genetic -- just the way I was built. But someone else should be more helpful with your question.

Take care!

Amy

[ajw4790]

Hi Sue!!!

Welcome!!!

Sorry I don't have any words of wisdom!!!

[morgan617]

Hi Sue, I am not at all familiar with mast cell problems, but wanted to welcome you! I know there are people here with those kinds of problems and am sure you will hear from them.....morgan

[Sophia3]

Welcome and sorry about your problems. We all seem to have so many and variations on a theme. Racing heart but UNKNOWN reasons or something.

This Mast cell and histamine deal...here is a dumb question. If you take an antihistamine at a very low dose (think Children's liquid benadryl or generic, I can handle 1 tsp for allergy days or when vertigo/nausea hits) does that help you feel better? It's been a long time since I heard that issue discussed.

Just wondered. Good luck working from home.

I am trying to figure out a way to work from home while lying down...mainly on my back.

A LEGAL profession that is. Oops!

p.s. Read about your husband and your business. Sounds interesting. GOOD LUCK.

[juliegee]

Hi Sue,

I think a problem with my mast cells causes my POTS. My DX is purely clinical so I'm not certain. I am currently being treated for Mast Cell Acivation Disorder.

I also get really hot at times, I flush (to the point where I've burst blood vessels on my face) and I deal with chronic hives. I have also had idiopathic anaphylaxsis several times. An epi-pen stops all of my symptoms at least temporarily.

I take a myriad of antihistamines. When I do, my chronic hives, nausea, headache, bone pain, acid reflux, blood pooling, lightheadedness, fast HR are all improved. My BP remains pitifully low, around 90/60 all of the time. Salt and fluid loading seems to help with that.

I take ranitidine, zyrtec, singulair, and benadryl daily. When I'm really bad, I sometimes also take doxepine and prednisone.

BTW, I'm close to your age, 45. Many with mast cell problems really flare in mid-life, maybe hormones?

For a more definitive DX: After an anaphylaxisis type "attack", you should get your serum tryptase measured to see if it's elevated and your methyl histamine in your urine. Even these tests are in no way definitive. It's a tough disorder to pin down.

Please let me know if you have any other questions. I'll try my best to help, although others here also know lots about this.

Hugs-

Julie

[pearsjon]

from what i have read it can be proven thru skin biopsy. this is something i have been looked at for.

i have livedo reticularis. if you google that there is a dermatology site that shows pocs and explains alot.

welcome, and hope you are negative.

[juliegee]

Unfortunately definitively DXing mast cell disorders is actually pretty complicated. A skin biopsy can DX mastocytosis usually when the patient has cutaneous (skin) involvement. A skin biopsy would be ordered if a patient presented with urticaria pigmentosa (UP). A skilled pathologist would be looking for too many mast cells. Some patients have limited mastocytosis where only the skin is involved.

There are other forms that are more systemic, where multiple organ systems are involved like the GI tract, the bones, etc. The criteria for a definitive DX is complicated, but it can involve a skin biopsy, bone marrow biopsy, elevated tryptase via bloodwork, and elevated methyhistamine in the urine, etc. Because mast cell disorders are rare, it is difficult to find an allergist who can DX and treat.

Mast Cell Acivation Syndrome (MCAD) occurs when the skin biopsy, bone marrow biopsy, and blood and urine testing are all normal, BUT the patient still has the exact same symptoms as mastocytosis. In other words, the number of mast cells is normal, but they are overreactive. I know we have members who are DXed with mastocytosis. Please chime in and share your expertise!

I've never had a skin biopsy or bone marrow biopsy done. Thankfully, my symptoms are under control now with meds and I carry an epi-pen. Should things flare again, I'll be looking at more testing.

What is livedo reticularis, firewoman?

Julie