lthomas521

In January 2003, the American Association of Clinical Endocrinologists (AACE) recommended that doctors "consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.0. AACE believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now." That was over 3 1/2 years ago. Hasn't your doctor been paying attention? Another possibility is that you have a mitochondrial problem. Thyroxine works by increasing the number and activity of mitochondria in cells. Common treatments for mitochondrial disease include vitamin and mineral supplements. See www.umdf.org

I was pretty desperate, and willing to try anything when I read this story: http://www.mecfscanberra.org.au/docs/stories/bronwyn.htm Although the woman who told this story is from Australia, her name sounds very Welsh, and I have long suspected that I inherited my problem from my Welsh grandmother. And since metabolic errors are usually hereditary, I said, what the heck, let me try some thiamine. I called my doctor to see if he had tested my thiamine levels, but he was on vacation. So I bought a bottle of thiamine pills from the health food store. The change that the thiamine wrought in me was almost miraculous. I went from contemplating going on disability to feeling nearly well, within about a week. The difference was noticeable within 24 hours. After a few months, I tapered off my beta blocker and Florinef. Now I just use a little midodrine now and then and do salt and water loading, plus my vitamins. Plus my stockings. I still have to pace myself, but I was able to stand on my feet for several hours yesterday. A friend of mine is running for Congress, and I was doing campaign work. If he wins, then dysautonomics will have a friend in Congress. If I stop the thiamine, as I did to humor one of my doctors, I get very sick again with 48 hours. (Thimaine has a very short half-life in the body.) I stopped taking the thiamine for a short time so the doctors could measure my thiamine levels. They were normal. My theory is that I have some sort of mitochondrial problem. They use huge doses of thiamine to treat mitochondrial problems. I can't get any of my doctors to explain the effects that thiamine has had on me, and I don't even think they take my account seriously, even though the doctors that I was working with (I worked for the medical affairs department of a pharmaceutical company) thought that the change in me was astounding. None of them could figure it out either. None of them had heard of POTS, although at least the European ones thought that low blood pressure was reason for concern. I take the 500 mg dose because that's the size the pills are. 100 mg doesn't seem to be enough. I don't know how many POTS patients would benefit from thiamine supplementation, but it's cheap, available over the counter, and has no known side effects that I have been able to find documented in the literature. I've seen some clinical trials that suggest that it can be particularly beneficial to diabetics, because it can help protect their feet, kidneys, and eyes.

I wasn't bedridden, but I was so sick that strangers would stop me in the halls at work and ask me if I needed to have someone take me to the nurse's office. I really shouldn't have been working. My dramatic improvement started within 24 hours of taking my first big (300-mg) dose of thiamine. I improved even further when I added other B vitamins to the mix.

It depends on what you mean by "alternative." Most of the things that help me are available without a prescription (thiamine, salt, licorice, pressure stockings). Does that make them "alternative"? Licorice is an herb, but it is also a drug that was originally suggested to me by a nephrologist. So is it "alternative," or is it part of "Western medicine"? From my perspective, the real question is the quality of the evidence that supports any particular intervention.

Sounds like you need a lawyer, O Brown-Eyed One. Someone familiar with the Americans With Disabilities Act. Having you work part-time sounds like a reasonable accommodation to me. Refusing to allow you to work part-time--and forcing you to work full-time until you dropped--might be more than unconscionable. It might be illegal. That administrator should be fired--in the interests of public health. Did you lose your health insurance when you left? Why am I not surprised to hear of such behavior on the part of the administrator of a health-care facility? Because it's endemic in such settings: http://www.bullybusters.org/press/nw042604.html

That's not what my doctors told me. The first doctor I talked to said that I should eat 2 bowls of bran cereal in the morning. If that didn't do the trick, then I should add psyllium-type laxative according to the label dose. If that didn't work, I was to add milk of magnesia, according to the label dose. If that didn't work, come back. The problem has been under control largely because of the salt loading and the magnesium, which I started for other reasons, with my nephrologist's approval. My internist says that my magnesium levels are fine, and that anyway it is difficult to raise magnesium levels by oral supplementation. He says that if you are seriously depleted in magnesium, they have to give it to you intravenously. Enemas are potentially dangerous, and none of my doctors have ever suggested them. An osmotic laxative such as milk of magnesia could exacerbate your POTS if it gives you diarrhea, but I've never had that problem.

Magnesium oxide has been a miracle cure for me. I needed the laxative effect.

Why does your doctor think that you are at risk of Guillain Barre syndrome from the flu shot, but not from a case of the flu? I always get a flu shot, unless there is such a severe vaccine shortage that the vaccine has to be reserved for people who are sicker than I am.

Wow. It's hard to tell whether that is bad news or good news! Best of luck!

Hi Robert: All of the problems you mentioned could be due to low blood volume? Have you seen a nephrologist? Have you done a 24-hour urine test and a blood volume determination? Taking in the fluid is only half the battle. You have to do something to make sure that it stays in your blood vessels. DDAVP will enable you to retain water, but it doesn't keep the sodium inside you. You haven't mentioned Florinef or licorice. You can get licorice teabags or licorice extract (make sure that it has glycyrrhizin in it, that's the active ingredient) from the health food store. Glycyrrhizin deactivates an enzyme in your kidneys, thus allowing your natural cortisol to act like a mineralocorticoid (salt-conserving hormone). Florinef is a synthetic hormone with mineralocorticoid effects. Even if you take Florinef and/or licorice, you will still need to take extra salt (and probably some extra potassium and magnesium). The other thing to think about is that you may need supplements of the water-soluble vitamins. Talk to your pharmacist about that.

The progesterone component of Yasmin is drospirenone, which is chemically similar to the diuretic spironolactone. It has antimineralocorticoid activity (i.e., it does the opposite of what Florinef does). Probably a really really bad idea for most women with POTS. It is contraindicated in women with adrenal insufficiency. http://berlex.com/html/products/pi/fhc/Yasmin_PI.pdf

Midodrine works right away. It doesn't need to "build up" in your system before it starts to work. In fact, it doesn't build up in your system, because the half-life is very short. If you don't feel a benefit from it, you may be on too small a dose (they generally start you on a small dose). I got used to the goosebumps. I take it only first thing in the morning, because my POTS is worst in the mornings. I only use it on an "as needed" basis.

NuvaRing is the best, as far as estrogen-progestin contraceptives are concerned, because it provides the lowest, steadiest dose of the hormones. Plus, you can't throw it up. Seasonale is just an extended-regimen pill. You can do the same thing with NuvaRing.

Hi Maxine: You may want to ask the doctor about inositol hexaniacinate http://www.thorne.com/pdf/journal/3-3/inos...aniacinate' It is a form of niacin that can be used to raise HDL levels. However, it can cause liver toxicity, so you have to monitor your liver enzymes while you are taking it. The main thing, however, is that it could cause vasodilation, so it could make your POTS worse. Another option is a different extended-release niacin: http://www.niaspan.com/High_Cholesterol/Ra...sp?kwcid=Ghdl34 http://health.yahoo.com/experts/heartdisea...hdl-cholesterol Here's something I just found: http://www.loweringcholesterol.net/herbal-...ies/policosanol

Could be trigeminal neuralgia. http://www.ninds.nih.gov/disorders/trigemi...l_neuralgia.htm

Churg-Strauss is basically a combination of severe asthma and vasculitis (inflammation of the blood vessels). So if you don't have those two things, you don't have Churg-Strauss. If your two main problems are gastric problems and a high eosinophil count, then the diagnosis of eosinophilic esophagitis sounds reasonable. Not everyone who has eosinophilic gastroenteritis has Churg-Strauss. http://allergies.about.com/cs/other/a/aa062702a.htm If you have allergies, they could make your POTS worse. Have you tried an elimination diet to rule out food allergies? Is the problem seasonal? Are you seeing an allergist? Have you been tested for celiac disease? Lots of people with POTS-type problems have it, especially if they also have gastrointestinal problems. http://www.celiac.org/ Are you sure that you have Raynaud's? Are your hands and feet always cold and blue? Or do they alternate between being blue, white, and red? If they are only cold and blue, and if they are that way all the time, not just episodically, then maybe the problem is not Raynaud's but just plain old low blood volume, which is common with POTS. Raynaud's is due to spasms in the arterioles (itty bitty arteries that lead to capillaries). http://www.emedicine.com/med/topic1993.htm

Here's a discussion of Churg-Strauss syndrome: http://vasculitis.med.jhu.edu/typesof/churgstrauss.html Why do you think you have it? Do you have asthma and vasculitis? "The American College of Rheumatology (ACR) has established criteria that must be fulfilled in order to classify a patient as having CSS. These criteria were intended to distinguish CSS from other forms of vasculitis (for the purposes of research studies). Not all patients meet every criterion. Some, in fact, may have only 2 or 3 criteria, yet their physicians are still comfortable classifying their disease as CSS. The ACR selected 6 disease features (criteria) as being those that best distinguished CSS from other vasculitides. In order to be classified as a CSS patient in a research study, therefore, a patient should have at least 4 of the 6 ACR criteria. "These criteria include: 1) asthma; 2) eosinophilia [>10% on differential WBC count]; 3) mononeuropathy; 4) transient pulmonary infiltrates on chest X-rays; 5) paranasal sinus abnormalities; and 6) biopsy containing a blood vessel with extravascular eosinophils."

Most of the people with NASH are obese and/or have type 2 diabetes. Other possible causes include hepatitis C. http://sadieo.ucsf.edu/course/things/falck...ohepatitis'

When it was happening to me, the doctor said that it was because my heart was trying to "beat on empty chambers." In other words, it wasn't refilling sufficiently between one beat and the next. It's nature's way of telling me to drink a liter of saltwater, I guess.

The best doctor I've ever had for POTS was a nephrologist.

Blood consists of three basic components: water and salts, red blood cells, and proteins. You lose the water and salt through your kidneys. The amount of water and salt that your kidneys excrete is regulated by the renin-angiotensin-aldosterone system (aldosterone is secreted by the adrenal glands). Florinef is a synthetic hormone that functions like aldosterone and is used in adrenal insufficiency and in POTS. The kidneys are also responsible for sensing when you don't have enough red blood cells. If the system is working properly, the kidneys secrete a hormone (erythropoietin) that tells your bone marrow to make more red blood cells. A recombinant form of erythropoietin (Epogen or Procrit) is available. If you take Epogen or Procrit, you also need extra iron and other vitamins in order to make the new red blood cells. The other part of the blood is blood plasma proteins, which are produced and consumed by the liver. Nobody can tell me how this is regulated.

I get them, too. When they started, I didn't even get head pain, just episodes of spinning vertigo. Now I get pain without vertigo. The pain isn't too bad, but I just feel exhausted when I have it.

Here's a good explanation: http://www.nlm.nih.gov/medlineplus/ency/article/000776.htm

Hi Jacquie: It sounds as if you might have rebound headache. http://en.wikipedia.org/wiki/Rebound_headache

If someone without a placard is using the handicapped parking space, and you have a cell phone, just call the police. Don't talk to the person. Anyone who would use the space when they don't need to is a sociopath. A friend of mine has a below-the-knee amputation, and sometimes people question whether she should be using the handicapped space. She just lifts up her pants leg, shows the prosthesis, and thanks them for helping to make sure that the space is reserved for people who need it.