Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Nevadan

Advanced Members
  • Content Count

    227
  • Joined

  • Last visited


  1. Miacalcin is for women past menopause that have osteopenia or osteoporosis, not younger women still in menses. After questioning my doctor about it, she told me that this medication is not very effective and it's the delivery system that's the problem.

    Here's another view of Miacalcin. I'm a 62 yr old male dx'ed w/ osteoporosis when I was 55. For the first year my dr prescribed Miacalcin and I had outstanding results - 5% improvement in the spine in 12 months! (3% with Fosamax is considered good.) Then along came Fosamax and he was convinced by the Pharma salesman that Fosamax was a better deal, so I was switched. For the next 4 years I had hardly any improvement in bone density. Plus I subsequently learned that Fosamax is incorporated into your bones for life, so if any of the "rare" side effects such as jaw bone death (osteonecrosis) becomes a problem, you are stuck. There is no antidote.

    I stopped taking Fosamax 2 yrs ago partially because I was planning some dental work but mainly because I was not comfortable with the risk (Vioxx comes to mind).

    Recently I had my regular DEXA bone density scan and my results had declined. So I asked my (different)dr to prescribe Miacalcin again, and I got the same story about it not being very effective, etc. It sounded like a sales pitch for Fosamax; however, since I had a previous history of good results with Miacalcin I did some research on Pubmed and lo and behold there are lots of published papers on good results with calcitonin treatment(Miacalcin). I gave my dr a stack of these papers and I think have her convinced to rx Miacalcin. From one of her comments it sounds like she may be under significant constraint against rx'ing Miacalcin; my guess due to Pharma influence. I think the manufacturer of Miacalcin just doesn't have as good of marketing as the Fosamax folks.

    For the record, Miacalcin (calcitonin) is a natural hormone with no known major side effects (minor side effects include drippy nose [it's a nose spray] and has performed favorably in many studies, particularly on the spine. Fosamax has several significant side effects (gastro problems, jaw bone death) and is with you for life.


  2. I second&third all the recommendations on far in this thread, particularly the stopthethyroidmaddness website. I've just discovered that I am, and probably have been for years, hypothyroid. Here's my case history in case it helps anyone else deal with this problem.

    I first became aware when last Fall I started feeling cold all the time and my hair started thinning significantly. When I Googled these symptoms fortuanately I found the STTM website and after looking at the hypothyroid symptoms list discovered a few more that I had had for years (e.g. dry itchy skin around my ankles, constipation, osteoporosis). I checked my body temp and found that I was running around 96F instead of 98.6F. I trooped off to my family doctor and told him what I had found - he proceeded to take one look at my TSH (0.9) and almost laughed at the idea I could be hypothyroid even though my total T3 (not free T3) was at the very lower boundary of the normal range.

    Next stop was another dr who was much more interested in how I felt instead of what my labs said. He agreed that my labs didn't look too hypo-like, but agreed that the symptoms sure sounded like hypoT, so he agreed to prescribe a very small dose of Armour Thyroid (my request) to see if anything improved. Within a week my body temp had increased at least 1 degree, so he continued to increase the dose very slowly (15mg/month) until now I'm at 90 mg with my body temp consistently in the lower 98F range and many of the symptoms resolved. My great hope is that the calcitonin in the Armour Thyroid meds will improve my bone density.

    After researching the heck out of hypoT, I've concluded that I probably have a rather rare form of hypoT caused by pituitary insufficiency which accounts for the low'ish TSH and low T3.

    The moral of my story is do as much research as you can, do as much self-dx'ing as you can, don't give up, be willing to change dr's, and don't rely on TSH. TSH may work for many people, but it sure doesn't work for all.

    I hope someone finds this helpful.


  3. The key to statins is understanding how many people would have died if they hadn't been placed on statins. I don't recall the number any longer, but you have to put a whole lot of people on statin therapy to prevent one cardiac related death. And if death from all other mortalities goes up, are they actually a good thing? Maybe Dan has the figures at hand since he just read a book about it.

    There is some discussion of this on Uffe Ravnskov's website (he wrote "The Cholesterol Myth"). Take a look at http://www.ravnskov.nu/myth6.htm Be sure to scoll down about halfway to the section titled "Costs". You can click on the reference numbers which will take you to the references section where you can click again and often be taken directly to the article or at least a PubMed abstract.

    Another fact I picked up from these books is that one of the recognized side effects of statins is a reduction in your body's generation of COQ10, an enzyme used in every body cell, and one whose lack has been implicated in congestive heart failure. It turns out that most of the cholesterol studies have not counted congestive heart failure in their results. According to the National Center for Health Statistics there has been a significant increase in the incidence of congestive heart failure since the early 90's, a few years after the widespread introduction of statins. At this point this is nothing more than an association - no cause and effect has been proven, in fact it has hardly been studied. It's stuff like this that may explain why the mortality rates including all causes have not shown much improvement with the use of statins and in some cases have decreased.

    By the way, I am not personally advocating that anyone stop taking their statins, I'm just recommending that each person should do their own homework and these books I've mentioned seem to be worth including in that homework. Clearly the use of statins is a much more complicated and controversial issue than I've ever read or heard from either a doctor or the drug adverts.


  4. I'm a true sceptic when it comes to medical claims, but as a career scientist in a non-medical field I have a lot of experience with decyphering scientific studies and papers. I was particularly impressed with the quality of this book after checking into some of the many references quoted. You are right that statins have been shown to help some high risk people, but there are a lot of other people for whom there appear to be no scientific evidence that statins help them (e.g. women in general, healthy men over about 55, and more). And there are several studies in which the mortality rate increased significantly within the subgroups taking statins. You would have to read the book and draw your own conclusions.

    I did find that the author has a website at http://www.thegreatcholesterolcon.com/ where you can purchase an online access to the book for $9.95.

    Also another book I've subsequently been reading is "The Cholesterol Myths" by Uffe Ravnskov. This book also discusses fats, cholesterol, statins, etc and generally comes to similiar conclusions as in the first book. This second book in not nearly as comprehensive in discussing other causes for heart disease. This author also has a website where you can view a pretty detailed summary of the material in the book. For this website scroll down the home page and click on the paragraph numbers to access the details. http://www.ravnskov.nu/cholesterol.htm


  5. This is OT, but since most folks here are into being healthy, and I found this book so interesting, I thought I would point it out anyway. The book is "The Great Cholesterol Con" by Anthony Colpo. It basically reviews most of the studies that have been done on cholesterol and heart disease and rather convincingly exposes the fact that a lot of us have been conned. After summarizing study after study and paper after paper, his arguments are pretty convincing. He proposes no "silver bullets" or magic diets, but does offer general guidance.

    His main conclusion supported by lots of references is that heart disease is not caused by cholesterol or saturated fats (I never thought I'd see the day that I would consider saturated fats as good food, but this book certainly has me reconsidering that). Moreover, statin drugs do not have nearly the great scientific backing that we are led to believe. For instance, when one looks at the various studies quoted to support the sale and use of statins, there are indeed cases in which various heart diseases have been reduced; however, if one also looks at overall mortality from all causes there is often no improvement - in many cases the statins do a good job shortening lives due to non-cardiac events.

    He devotes quite a bit of the book to discussing various studies that can explain what does cause heart disease. These include stress, being overweight, eating a poor diet (lots of info here), lack of exercise, etc.

    The book isn't particularly cheap (~$25) and it's a pretty long read, but I found it to be one of the best books on heart disease, and other diseases such as cancer, that I have read.


  6. Most foks who frequent this forum will have no trouble identifying with the case history presented in the introduction: 30 yr old female who has seen as many as 30 drs over the past 15 yrs, dx'ed with eating disorders and mental issues. In this case she finally sees a dr who correctly dx's her with celiac disease!

    Jerome Groopman, the author, tries to explain how dr's think to make their dx's and most importantly how the patient can influence the accuracy of these dx's. I think the book could be extremely helpful to many reading this forum. It's about $15 at Barnes & Noble, probably less at Amazon. Besides it's a very interesting and entertaining read.


  7. Thanks for a VERY interesting article!

    I'm almost a perfect fit for the sub-laboratory hypothyroid person described. About a year ago I started being really cold natured (had always been warm-natured before) but thought it was just "aging"; then a few months later my hair started noticeably thinning. It was then after a "hair thinning" search on Google that I became aware of hypothyroidism. After a bit of research I measured my body temperature - it was in the 95's at 4:00 pm which should be the time of max temp. Since then after leaving one dr and finding another, I'm on Armour Thyroid and so far things are looking much better. My afternoon temps are now in the 97's, and I'm not through increasing the dose.

    As far as blood work is concerned, I was not hypoT. My previous dr took one look at the blood work and told me I couldn't be hypo and to go away and come back in 6 months. He just shrugged at my symptoms. Fortunately my new dr was willing to try a low dose of thyroid meds which immediately started raising my body temps. I probably have what this article calls "secondary hypothyroidism": all of my thyroid labs are within the acceptable ranges but "low normal" - this includes Free T3, Free T4, and TSH.

    This article explained a lot things. Since I'm still on the hypoT learning curve, thanks again for this article.


  8. As a recently (mostly self) diagnosed hypothyroid sufferer one of my concerns with which meds to take is related to bone density issues. I was diagnosed with osteoporosis about 6 yrs ago. For the first year my dr prescribed a calcitonin containing nose spray which resulted in my bone density increasing significantly enough to get my density up to osteopenia levels. Subsequently that dr quit his practice and my next dr prescribed Fosamax which after 4 yrs had not improved my bone density any more; therefore, I'm inclined to think that lack of calcitonin may have been my problem all along (I admit not much science behind this prejudice). To make a long story shorter, the thyroid gland secrets calcitonin along with the T3's, T4's, etc, so I'm thinking maybe my bone density problem may have been thyroid related all along. Armour Thyroid suposedly contains calcitonin while the synthetics do not, so this may be something to consider. Another anecdotal case is that a friend's son had to have his thyroid removed as a kid several years ago and took synthetic thyroid meds as replacements and now has been dx'ed with osteoporsis in his 20's - again don't know if this is related to lack of calcitonin but I do have to wonder. Based on this thought process, I've chosen Armour.

    Just a thought....


  9. georgie, I hope I do get that pleasant surprise you mention regarding cholesterol and bone density. The fact that Armour Thyroid is one of the few thyroid meds containing calcitonin was why I requested it.

    Armour for cholesterol control - that's a new one to me. It sure is cheaper than most of the statins :rolleyes: .

    Thanks for the encouragement.


  10. A little clarification regarding some good points raised: I did not mean to imply that all body temperature abnormalities are thyroid related. In my case I did not think "thyroid" until I also developed some additional symptoms that are on the thyroid symptom list (it's almost as general as the celiac symptom list :rolleyes: ): thinning/loss of hair, fatigue, and becoming slow to recover from exercise. My latest doctor ran a few other tests initially (CBC, feritin level, testosterone, prolactin, etc) to rule out some other likely causes. After these tested ok, he was willing to prescribe a very low dose of thyroid meds just to see if they would help my symptoms even though my thyroid tests were within the "normal" range. At this low dose my general symptoms didn't improve; however, I monitored my body temp daily and the data showed some clear improvement which seemed to convince him we were on the right track. He then began a slow increasing of the meds over time which continues to raise my body temps toward "normal" and my sensitivity to cold is now improving. I think the hair loss and fatigue issues will take a while to see any improvement. Bottom line is that one needs to be sure and pursue any thyroid dx'ing and treatment under the care of a good doctor who, as has been said elsewhere, is willing to treat your symptoms, not just your lab results.

    For what its worth, I have another interest in my thyroid issue: I have a history of high cholesterol levels (controlled now with Zocor) and also was dx'ed with osteoporosis about 6 yrs ago (improved to osteopenia after taking calcitonin - I subsequently took Fosamax for a five yrs with no further improvement in bone density). I know it's a very long shot, but both high cholesterol and osteoporosis are possible symptoms of hypothyroidism, so I'm interested in seeing if these improve after getting my thyroid levels to a more optimum level. (Calcitonin is one of the hormones produced by the thyroid and is critical for good bone health.)

    I also should have mentioned what I found to be a very helpful website regarding thyroid issues: http://www.stopthethyroidmadness.com/

    Also for what it's worth, I had my adrenal levels tested via saliva tests thru ZRT Labs. They also did a "blood spot" test for Free T3, Free T4, thyroid antibodies, and TSH. All samples are collected at home using a kit they provide. For their blood spot test one pricks a fingertip (like folks with diabetes have to do) and deposits several drops of blood on a blotter-like collector where it dries. I was pretty sceptical of this blood spot testing so I did my sample within about 1 hr of having a normal blood draw for the thyroid level testing at a conventional lab (Labcorp). There was good agreement in the Free T3 & T4 levels; the blood spot testing showed a higher TSH level. My adrenals and thyroid antibodies tests results were pretty normal. Should anyone want to try the ZRT Labs testing, I recommend accessing them by first signing up for the "Canary Club" (free signup) since you then get a significant discount on the ZRT testing. (Thru the Canary Club, the adrenal saliva tests (4 samples during the day) and the blood spot testing run $200). ZRT is approved by several insurance companies if you have a dr's order. You can also request their testing without a dr's prescription except if you live in California.


  11. Gentleheart, have you had your thyroid function tested? Your symptoms of heart palpitations, anxiety, etc could be due to an overactive thyroid (hyperthyroidism). If your thyroid has been tested, or if you have it tested, be sure that the "Free T3 and Free T4" levels are measured and not just the usual TSH level.

    Of course there are lots of other possible causes of your symptoms; this is just one possibility.


  12. I see several thyroid threads here and since I've been doing a lot of thyroid research lately for myself, I thought what I've found might be worth sharing. Sorry if it bores anyone.

    The thyroid gland generates several hormones (T1, T2, T3, T4, calcitonin, and probably some others). It is controlled by the pituitary gland which generates "thyroid stimulating hormone" (TSH). When everything is working correctly the pituitary gland increases the TSH level when the thyroid output (T3, T4, calcitonin, etc) falls a bit low. As soon as the thyroid gland raises its output to a normal level, the pituitary gland lowers the TSH level back to normal. If the thyroid gland itself is defective and can't produce enough output, then the pituitary gland keeps increasing the TSH level, trying to stimulate the thyroid more. Hence typically a high value of TSH indicates that the thyroid is having trouble producing enough output (this is called hypothyroidism).

    Modern medicine in its infinite wisdom has decided that usually it is sufficient to monitor the thyroid by just measuring the TSH level. This seems to work for quite a few people, but certainly not all. A far more thorough methodology is to measure the free T3 and free T4 to determine that the output of the thyroid is ok instead of measuring just the TSH level. [T3 is the thyroid hormone that is used by almost every cell in the body, T4 is a storage hormone form that is converted by the body into T3 as needed. The significance of the "Free" terminology is that more than 95% of the T3 and T4 circulating in the blood is bound up with other substances such that they can not be used by the cells; therefore it is critical to measure the "Free" T3 & T4 levels; knowing the total T3 or T4 is almost useless.]

    The body's hormone system is extremely convoluted with lots of feedback loops making for great difficulty in diagnosing malfuntcions. For example, while a high TSH value usually indicates low thyroid output (hypothyroidism), there is another less frequent failure mode in which the pituitary gland doesn't supply enough TSH resulting in correspondingly low output from the thyroid gland. In this case it is possible one has a low TSH and low thyroid output.

    In my case, a few months ago my body temp started decreasing (down to 95 ish instead of the normal 98.6 which it used to run) and I started being extremely cold all the time. My doctor wasn't much concerned but did finally measure my TSH which was 1.1 which should indicate a normal thyroid condition. I went to a new doctor who took much more interest in my symptoms and measured my Free T3 & T4 levels. My Free T3 was within the "normal range" but near the lower limit. This second doctor agreed based on symptoms alone to prescribe thyroid medicine (Armour Thyroid at my request) to see if my symptoms responded. Sure enough after a few weeks of meds my body temp is increasing toward normal and my cold sensitivity is improving. Since I have an older brother with similar symptoms, we probably share a genetic tendency toward low pituitary function. Unfortunately his doctor is like my first doctor and only measures his TSH and proclaims there is no thyroid problem.

    Enough! Hope someone finds this helpful.


  13. You need a Dr that looks at the total picture - not just a lab report. ;)

    Thanks for the reply. So far my dr is proceeding with treating my symptoms by prescribing a very low dose of Armour Thyroid (15 mg/ day) just to see if any of my symptoms (low body temp, cold sensitivity, thinning hair, and slow recovery after exercise) respond. [My TSH, free T3 & free T4 are within the "normal" range but tend toward the lower quartile.] After doing quite a bit of web research, I'm beginning to suspect an adrenal problem as well (body temps are very variable from day to day). After the first 3-4 days of meds, even with this small dosage, my average afternoon temp has increased about one degree - I was running in the 95's; now I'm in the 96's.

    I'm mostly trying to get prepared for my next dr appt later this month so I know which type testing to prefer. I expect he will order more tests, so I would like to get the most reliable results. I've found stopthethyroidmadness.com website and they have a preference for saliva testing for adrenal function. The two labs doing saliva testing that I've explored are DiagnosTech and ZRT. The first one appears to also sell supplements based on their testing results which I find to be a conflict of interest. That leaves ZRT. There are probably others.

    Since this is all new to me, it's a bit bewildering. All feedback is much appreciated!

    Thanks again.


  14. Re mercury toxicity it is important to differentiate the different forms of mercury. Elemental mercury (as in a thermometer) is not absorbed very well by the body so its toxicity is low even if swallowed. This is also the form that is used in dental fillings. However, elemental mercury vapor is readily absorbed into the body and removal of old dental fillings could generate vapor due to the heat generated by the drilling, therefore it is generally advised that exising fillings are probably relatively safe and are better left alone. The really dangerous form of mercury is in organic mercury compounds, particularly methyl mercury. This is the form that accumulates in animals, particularly in fish. Even in this case, recent studies have concluded that the benefits of eating fish in moderation as one of the best sources of omega-3's fatty acids with respect to numerous health benefits of omega-3's outweighs the risk of organic mercury toxicity - even for pregnate women. ( http://www.nlm.nih.gov/medlineplus/news/fullstory_40141.html )

    On the other hand there are a few documented cases of people who are hypersensitive to all forms of mercury including elemental forms but their frequency is low.

    Until the next mercury study is published.... ;)

    George


  15. As georgie has said, check out the "StoptheThyroidMadness" website at http://www.stopthethyroidmadness.com/

    I have recently begun having symptoms of hypothyroidism and have found the above website to be at least as beneficial for thyroid issues as this one is for gluten problems.

    I'm one of those whose lab results are within spec but on the low end for free T3 and free T4 AND with a marginally low TSH. My previous doc said "no problem - don't worry about it". But with my hair thinning like crazy and my body temp running in the 95-96 range, I went and found another doc. This one agrees that labs aren't all that great and he is treating the symptoms with Armour Thyroid which I requested after doing some research including the above website.

    Good luck.

    George


  16. I have just recently encountered some hypothyroid symtoms (male, 61 yrs old, gluten sensitive(not likely celiac based on DNA testing), gluten-free/CF for 1.5 yrs). My main symptoms are low body temps and thinning hair. I have recently started taking Armour Thyroid in very low doses and so far my temp is increasing. You might want to take a look at the following website if you haven't found it already: http://www.stopthethyroidmadness.com/

    George


  17. Hi Sandra

    .......

    We have moved on to gluten-free and dairy-light since, but continue with Balanced Omega supplements(3, 6, 9). It was quite obvious that my son was malabsorbing fats (and fat-soluble vitamins with them), but the reason was gluten (wish we knew then!).

    .......

    Anna

    I notice you are taking a combo of Omega 3,6,9 - I HIGHLY recommend reading the book I mentioned further up this thread "The Queen of Fats" by Susan Allport. Her book makes a good case that one problem with the Western diet is that we are too low in Omega-3 and too high in Omega-6. She discusses the actual research experiments that led to this conclusion in some detail. Omega-3 is almost a wonder drug; however, Omega-6 can be a real problem generator. Bottom line from those studies: take Omega-3 but not Omega-6 since we are overdosed on that one already - possibly even with malabsorption.


  18. On the topic of Omega-3, I thought it might be of interest to mention a very interesting book I've just read: "The Queen of Fats" by Susan Allport. The subtitle is "Why omega-3's were removed from the western diet and what we can do to preplace them". I heard the author interviewed on NPR Science Friday a few weeks ago and then ordered the book. The message from the interview was that the elimination of trans-fats may lead to an even worse health situation. Her book is a biographical history of research on various forms of fats, most of which has been largely unappreciated in the scientific/medical/pharma/ag world. Even it you are not interested in the history, skip over to chapter 10 for some interesting summarization. One result of the research she reports is that it's not how little fat we eat that counts - more importantly it's what kind of fat we eat that counts. Her account does an interesting job explaining the significance of the various fats on health: satuated, monosaturated, and in even greater detail the polyunsaturated fats. The conclusion presented is that omega-3 polyunsaturated fats are the key to solving many of todays health problems - from cardio to obesity, diabetes, arthritis and beyond - and her book presents some pretty convincing evidence. Unfortunately for some practical reasons which she describes, our food industry tends to emphasize omega-6's instead of omega-3's which is part of the problem instead of part of the cure. As she explains, her book is not a diet book - it's just an airing of some lesser published research over most of last century.


  19. Just a reminder: for every 4 women with osteo there is one male with it also. That amounts to a large number of males! Osteo is NOT just a women's disease.

    I know, I am male and I was dx'ed at age 55 after my older brother was dx'ed. I suspect ours is due to some genetic abnormality, of which there are several known. I am gluten, at least wheat, sensitive as determined by dietary experimentation, and I am double DQ1, and totally gluten-free/CF. I'll probably never know the actual cause of my osteo. It did improve with meds to the point that I have now only osteopenia in my spine and my hips are within the normal range. The first meds I was given gave me the most improvement - they were not Fosamax types; I believe it was called Calcitonin. After about a year on that med with good results, my dr retired and prescribed Fosamax which was the new drug on the block as a parting shot. I took Fosamax for 5 yrs and never saw any additional improvement; also didn't see any more degradation which my new dr took as a positive indication. After reading up on some of the latest research on osteo and after some questions re Fosamax began to surface last year, and since I was seeing no further improvement, I quit taking Fosamax last January and am trying the supplement approach (and it's not just calcium - also critical are magnesium, zinc, vitamins D, B12, etc).

    Re Fosamax, there is some risk gradually being recognized (osteonecrosis). It is usually believed by the dr's (probably at the recommendation of the drug co's) that the risk of osteonecrosis is much much less than the risk of osteo. In my opinion a more serious issue is that Fosamax gets incorporated into the bones and remains there for many years after one stops taking it, so if more negative side effects do surface as more people use it, one can not just quit taking it and expect immediate relief. In my own non-medically qualified opinion, if I knew I had a malabsoption problem due to gluten sensitivity - I would first try to remedy the malabsorption with a strict gluten-free diet and eliminate dairy as well as previously mentioned in this thread and see if the bone density responded before jumping into meds such as Fosamax.