Lenna

My son just had his calcium and parathyroid hormone (PTH) tested to see if he has hyperparathyroidism. His calcium was slightly high but his PTH was very low, which means it is unlikely that he has has a problem with his parathyroid. However, his doctor did mention that his albumin was high which is likely the reason his calcium is high. His doctor is going to do an ionized calcium test to be on the safe side. My question is, why does he have a high albumin count? I googled high albumin and it seems to be caused by dehydration. The kid drinks 3 litres of water a day...how can he be dehydrated? But he is hypovolemic. Does this mean he's dehydrated? I'm really confused about this. Can anyone explain it to me? Thanks. Lenna

Yes, I have had that ruled out. I'm curious as to how she lives without adrenals. She must supplement like crazy. Gary Wow, you have no idea. She has Multiple Endocrine Neoplasia, Type 2, which can lead to pheochromocytoma, thyroid cancer and hyperparathyroid. Thank goodness she did not have cancer, but she had both her adrenal glands, her thyroid and 3 of her parathyroids removed. She is on a boatload of supplements, hormones and steroids. BUT she feels great, at least compared to how she felt for the first 19 years of her life. Now we're in the process of evaluating my son for this since it's a hereditary condition. His symptoms don't closely match my niece's but there's some overlap.

Gary, have you ever been evaluated for pheochromocytoma? This is a tumor on the adrenal gland. It can cause some POTS-like symptoms, along with a lot of anxiety, palpitations, chest pains, vomiting or nausea...My niece was diagnosed with it last summer after spending her entire life looking for a diagnosis. By the time they figured it out, the tumors were so large that both of her adrenal glands had to be removed. But, she now feels better than she ever has in her life.

Mary, keep in mind that 10 grams of salt is about 4.5 grams of sodium. My son doesn't like to salt his food, but he likes salty food, if you follow my drift. He likes food made with canned tomato sauce, tomato soup, lox, chicken broth, chicken nuggets, things like that which have a lot of salt. I doubt he gets up to 4 or 5 grams of sodium, but he gets pretty close some days. Good luck, Mary. I've been following your posts for a long time now because you're my son's age and I think you're incredibly smart and articulate. I'm so sorry that you're losing strength and hope; I hope that this is temporary and you'll be seeing improvements soon. How have you kept up with school? Please hang in there. Lenna

Have you been evaluated for pheochromocytoma? I think you would need to see an endocrinologist. http://www.wrongdiagnosis.com/p/pheochromo...ma/symptoms.htm

I thought this wasn't available in the U.S. Has this changed? Or am I thinking about something else?

Shimoda, Another name for tumeric is "curcumin". You might find it under that name.

My pharmacist said to definitely take it with food, and to start with just one capsule a day for about a month, before building up the dose. The capsules I bought were 400 mg. For those of you who are using tumeric in your cooking for its health properties, I doubt that the amount you're using is anywhere near a capsule's worth; unless you're enjoying the taste, it's probably a waste of time.

I just bought some Tumeric ( 450 mg. capsules) at our local compounding center. They know a lot about homeopathy and holistic therapies. The pharmacist said to give it at least a month to build up in my son's body and begin to have an effect. I'm going to start him on 1 capsule/day for a month, then increase to 2/day. She recommended that he not take more than 1 capsule per meal.

Hi Julie, Your news is exciting! Does the tumeric interfere with your ability to fall asleep at all? Have you given it to your son for relief of his POTS symptoms? If so, is he seeing any benefit from it? Danny's biggest POTS complaint is fatigue. And the brain fog makes schoolwork very difficult. I'm wondering if he should give the tumeric a try? Thanks for letting us know. Lenna

There are medications that can help your daughter's nausea. My son suffered from nausea, lack of appetite and weight loss for over a year when he developed POTS. After a year, he was referred to a gastrointerologist by his new POTS doctor, and the GI prescribed a medication called Domperidone. You have to get it mail order from Canada or Europe because it's not available in the U.S. It has made a world of difference for my son. He's eating again. He rarely complains of nausea anymore. The first POTS specialist that my son was seeing for a year never recommended seeing a GI. That makes me so angry in retrospect! But the lesson to be learned is that you can't rely solely on these doctors, you have to do your own homework - just as you're doing now. My son has also given up gluten. He doesn't have celiac disease but it was suggested that he might have a gluten sensitivity. It's a pain in the butt diet, but he has showed some improvement in his energy level in the 3 months since stopping gluten and he's more than willing to stick with it. (He, by the way, will be 17 in 2 days.) Hope this helps a bit. Good luck to you and your daugther!!

My 16 year old son, who has POTS, was always nauseated, feeling full as soon as he started a meal, and losing weight. He finally went to see a gastrointerologist. This doctor suspects that my son has gastroparesis, which is very common with POTS. We haven't put my son through the full battery of tests but the doctor prescribed Domperidone, a medication often used to treat gastroparesis. My son's nausea is at a much lower level now and his appetite has really picked up. He's gained at least 5 pounds in the 2 months since he's been taking Domperidone. PLEASE see a gastrointerologist. You don't need to be suffering like this, and the doctor you're currently seeing may not the expertise to help you with the nausea. Good luck! -Lenna

Was fainting the only symptom your daughter had, or were there others? Was she experiencing any nausea, headaches, fatigue, brain fog? Did her heart rate race when she stood up? These are often the symptoms of POTS, along with dizziness or fainting. Can these be symptoms of vertebrae misalignment as well?

So, if someone has a vitamin D deficiency, does taking supplements help, or is it more complicated than that? When a person has a vitamin B deficiency, they sometimes need injections because their bodies aren't absorbing B. It doesn't work that way with D, does it?

davidsmom, I would love to know how you're dealing with your son's education. My son missed most of his sophomore year of high school, and now is missing a lot of his junior year. It will take at least an extra year of high school to graduate, probably more. I don't see how home schooling can work for him since he feels so sick much of the time. What is your son doing about school? Thanks. Lenna

davidsmom, The pattern you described is exactly the pattern my 16 year old son has followed for the past 18 months. Stricken in the fall, sick all winter, slowly feeling better in the spring, much better in the summer, total relapse in the fall. I don't understand it at all. Of course, some people think that it's psychological...too much stress about school, or something like that. I'm sure there's a better explanation than that!

My son had a similar experience. He slept on a tilted bed for a year, and always had insomnia (along with a myriad of other POTS symptoms). The insomnia cleared up a bit during the summer after a trying a couple of strategies (melantonin and not eating any later than 9PM). Then we spent 2 weeks away from home and his bed was flat. He slept fine, but the insomnia returned when we got home. When we finally flattened out his home bed after a couple of months of struggling with sleep, he began to sleep well again. And he really never noticed a correlation between other POTS symptoms and a tilted (or flat) bed. By the way, we ruined his very expensive mattress and box spring by keeping it tilted for a year. It now sags in the middle! I recently read something that suggested that the foot of the bed, not the head, should be elevated. ????

Dan is seeing Dr. Alex Flores. He's a pediatric gastrointeroloigst at Tufts New England Medical Center (but has office hours in Wellesley as well, which is where we see him). Dan's POTS doctor, Roy Freeman at Beth Israel, referred us to Dr. Flores. He's a very nice guy and is trying hard to think outside the box to help Dan not only with the GI issues but with other POTS symptoms as well.

My son has POTS and the nausea has been horrible for the past year. Two months ago he saw a Gastrointerologist who prescribed domperidone. He is very slowly building up the dose. Even though he's only halfway to a full dose, the nausea has subsided enough that my son is able to eat with gusto. He still has low level nausea but it's rarely bad enough to sideline him anymore. Ask your doctor about domperidone. You may need to see a GI doc. In Europe it's an over-the-counter medication but in the U.S. it's not FDA approved. We are still able to get it with a prescription at a compounding center. It's quite expensive because insurance won't cover it, but it's worth it to see my son gain some weight! He has not had any side effects from it.

Julie, For as starting dose, my son's doctor told him to take 3 mg. After a couple of weeks, he increased it to 6 mg. I routinely take 3 mg. If it gave you a headache, I would start with an even smaller dose and work up very gradually. Lenna

When my son first developed POTS symptoms, he was diagnosed with Migraine Related Vertigo - also without the pain of the migrane. He was put on Nortryptaline, which made him feel worse. Eventually we found out that he had POTS. I've always assumed since then that the Migraine was a misdiagnosis rather than him having both disorders. If you've already been diagnosed with POTS, that would explain the dizziness, wouldn't it?

This sounds so encouraging and I hope it continues to work well for you. Please update us in a couple of weeks. I'd love to hear how you're doing.

Thanks for all of your replies. Danny has been taking a very small dose (5 mg. 3x/day) for 2 weeks now and it has definitely taken the edge off the intensity of his nausea. He still can't eat first thing in the morning (I hate sending him to school on an empty stomach), but is eating pretty well the rest of the day despite some persistent low-level nausea. I'll be speaking to his doctor next week, and maybe he'll want to increase the dosage. No side effects so far.

My son's doctor told him to take a TOTAL of 1000 mg. a day, broken up into 3 doses over the day, to be taken with meals. He also said to work up to 1000 mg. very slowly...start with 250 mg. a day for awhile, and so forth. My son never did this because the tablets made him very nauseaous, so I can't report on whether they helped with his symptoms. However, I think you probably took way too much and way too fast. Even something like salt tablets should be taken with medical advice/direction. Maybe other people who take salt tablets can weigh in. Maybe you can try it again. Good luck. Lenna