Dear Andy,
I cannot thank you enough for validating my symptoms and confirming that I’m not a hypochondriac! Your words literally brought tears to my eyes. As did many of the posts I’ve read this week at Thal Pal, which also serve to fuel my frustrations with short-sighted doctors – even as I try to practice being nonjudgmental about their ignorance.
Thanks for the suggestion re the PHT test. Because I’m being treated for OSA with a dental appliance, and since apnea can lead to PHT, I can ask for the test without mentioning thalassemia then. Nothing ventured, nothing gained… :-)
I hear you loud and clear about taking matters into my own hands! And you said a mouthful with, “there is no easy solution to the problems of thal minor.” The more I read from those with this disorder, the more I realize just how complicated the situation can be for each individual.
In my case, migraines are an additional challenge!
One teensy example: watermelon. Despite its refreshing taste and lovely antioxidants, this fruit can also trigger migraines. The longer a watermelon hangs around, the greater its tyramine content. And amines can cause debilitating headaches in some folks. So, when I eat watermelon, or other migraine triggers, I eat small amounts, and then take medication in hopes of staving off a full-blown migraine attack.
Migraine certainly has taught me the value of hydration! To the point that I tend to drink so much water that it flushes electrolytes, which means I need to take mineral supplements every day – including small amounts of calcium and magnesium. Small amounts, since I also eat lots of almonds, black beans, Greek-style yogurt, cheese, and other foods high in these minerals.
The real trick is to maintain balance, since the foods I love to eat can lower blood pressure. Mine is lower than normal to begin with, around 105/65, though the diastolic often measures in the 50s. So the thought of taking sildenafil for PHT gives me pause, since anything that relaxes my blood vessels at-rest more than they’re already relaxed not only can cause dizziness and fainting, but can also trigger an awful migraine. Many thanks for mentioning the amino acids – I’ll research them further for any side effects re migraine.
Regarding vitamin D: As you mentioned, it’s absolutely vital. Truly a remarkable hormone! This, I discovered after being misdiagnosed with fibromyalgia several years ago. But my pains (knees and hips especially) went away after six weeks of sunshine and no rain, which is quite unusual weather here in Seattle, even during summer! So the proverbial light bulb clicked on above my head, I did some research, and then took matters into my own hands. ;-)
My blood level was 43, technically in the normal range, but I’ve learned that those normal ranges are often inaccurate for my body. So I’ve been supplementing with 3,000 to 4,000 IU of vitamin D3 every day for the past few years. My hips and knees continue to be pain free. Anytime I feel a flare-up of “fibromyalgia” at night, then I take 1,000 IU and go back to sleep within a few minutes. In the meantime, research has confirmed a significant link between fibromyalgia and vitamin D3 deficiency.
Here are only a couple of links on the subject:
http://www.ncbi.nlm.nih.gov/pubmed/21894355 http://www.jpma.org.pk/PdfDownload/2395.pdf(Trader Joe’s carries vitamin D3 which is suspended in olive oil, rather than in soybean oil. Soy, with its estrogenic properties, can be a problem for migraineurs. However, TJ’s vitamin D does contain gelatin, so it’s not a vegan product.)
As for another important electrolyte, salt: I add Himalayan pink salt (
www.himalasalt.com) to certain foods. And, to help counteract goitrogens in my diet (broccoli, cabbage, potatoes) and “speed up” my thyroid function a bit, I take one-half tab of Icelandic kelp each day (about 112 mcg of iodine).
As for vitamin E, I’m hesitant to supplement, for a couple of reasons: (1) The foods I eat include vitamin E already, and (2) I take Exedrin Migraine to manage my headaches. EM truly is a wonder drug for me, though I understand that aspirin carries the risk of hemorrhagic stroke, and acetaminophen can cause liver damage. Thus far, I have no ulcers or other bleeding in my intestinal tract, so I don’t believe the aspirin is causing internal leaks that may be contributing to my anemia (Hb of 9 and Hct of 29). I’m researching silymarin (milk thistle) supplements to see if they might help without causing migraines.
In addition, my ferritin level is 150, which means that iron deficiency is not an issue. But there’s hemachromatosis in my family, which is why I keep a close eye on iron consumption. A few cups of decaf coffee and white tea every morning seem to maintain balance and avoid build-up. Of course, as with all things, moderation is key! For instance, I drank so much green tea back in 2004 that it caused iron-deficiency anemia, which took six months of supplementation with iron to correct. No fun.
As you implied, managing thal minor can be quite a balancing act!
There are other supplements I take (folic acid among them), and other issues I could talk about, but this message is growing far too long. Thanks so much for reading this far. I’ll post again later and on different subjects.
Andy, many thanks again for your response, for your suggestions, for your encouragement, and for all the work you’re doing on behalf of thal minors! You’re truly an inspiration.