trehouse60

Another reason that some drugs work for some people, yet do not work for others, may be the actual hormone that is in the prescription. 

Our body's use 2 major hormones to regulated thyroid function:  T-3 and T-4.  Synthroid, levoxyl, levothyroxine, Oroxine, and others contain ONLY T-4, thyroxine, and have no T-3, tri-iodothyronine.  Again, our bodies need BOTH to function properly.  Anyone who has had their thyroid removed NO LONGER makes both hormones, and needs to have both replaced on a regular basis.  MOST people with true hypothyroidism are no longer producing adequate amounts of BOTH T-4 and T-3, but the majority of physicians DO NOT recognize or acknowledge this, and therefore DO NOT TEST for deficiency of T-3.  The TSH blood test checks only for failing T-4 levels, and physicians accordingly prescribe only T-4, thyroxine, and many, many, many patients never REALLY  have true thyroid health ever again.

I found that even though I was taking what the lab levels indicated to be adequate amounts of Synthroid, and then levoxyl (which I got as generic levothyroxine) - I still felt like crap much of the time. 

As I was researching fibromyalgia, I came across BETTER information on thyroid problems, and asked my doctor to switch me to the natural thyroid hormones contained in Armour THyroid, which is dessicated (dried) pig thyroids, and contains BOTH T-3 and T-4 hormones plus trace elements of other hormones and minerals our bodies need.  Since the switch, I have felt tremendously better than I ever did on Synthroid or levothyroxine.  (My doctor still orders TSH alone to determine dosage, but I think that is because the insurance company dose not pay for the other tests except for initial diagnosis.)

This is an EXCELLENT website, despite the fact that the author is pretty adamantly against synthetic thyroid drugs, and her presentation is a little chaotic!!  If you are willing to read through the pages, and are willing to consider the basic information offered minus the excessive enthusiasm of the author, you will find a treasure trove of thyroid information here:  http://www.stopthethyroidmadness.com/

Take the time to read through the entire site, if you would please.  It will not be wasted time, especially if you will take thie information with you, find a physician willing to indulge your desire to try something different, and take the time and put up with the inconvenience of being off any thyroid medications for a couple of months to clean out your system and then get started on a proper dosing schedule of natural     thyroid hormones, including BOTH T-4 AND T-3 replacement.

I've been on Armour thyroid for about 4 years now - has made a tremendous difference in my life.  My physician allows me the latitude to adjust my own dosing according to how I FEEL, rather than what the TSH says - treating symptoms rather than lab valures  REALLY is a MUCH SUPERIOR method of maintaining thyroid health.

And my fibromyalgia is also easier to manage now that my thyroid health is in better control.

Sincerely

Tre

(P.S. For those who wonder why doctors would test/prescribe TSH and T-4 only when our bodies need T-3 also, the answer is the power of Big Pharma.  Decades ago, As the ability to develop synthetic drugs became more accessible, a pharmaceutical company found the "proper" formula to approximate natural T-4 hormones, and marketed it as THE ANSWER to hypothyroidism.  The propaganda distributed to doctors offices and public pharmacies stated that T-4 was shown to be ALL that was needed to re-establish thyroid health, and relieved to FINALLY have something to prescribe to their sick patients, very few doctors offices, clinics, hospitals, etc, conducted their own studies or saw the need to contest the pharmaceutical's claims.

Why would a company market synthetic T-4 only and ignore T-3???  Money, money, money.  They can charge a lot more money for synthetic drugs they create than they can for natural substances. Example:  even after decades of the availability of Synthroid, people are saying they still pay $25/month - and in lots of cases that's just the co-pay rather than the total cost of the drug.  MY Armour thyroid costs between $19 - $23 a month, depending on dosage; and that is the TOTAL cost of the prescription.  YES, I HAVE TO PAY THE ENTIRE COST, because my insurance does not cover Armour thyroid, but still, I AM PAYING LESS FOR TOTAL PRESCRIPTION of a natural substance THAN MANY PEOPLE ARE PUTTING OUT FOR COPAY ONLY for a synthetic drug.

What's that say about the companies that make these drugs???  They are making a huge amount of money for often inferior products.  No wonder the FDA is being lobbied to outlaw both over-the-counter and prescription natural products.   Just saying........

On Aug 11, 2011 11:35 PM baroque wrote:

Levoxyl is no substitute for synthroid.  After three months on Levoxyl my blood counts were low.  Dosage was raised from .112 to .125  with no effect.  Im going back to Synthroid even though it is more expensive. 

The Levoxyl you were getting may not have had much active drug in the tablets, hence it didn't work.  Levoxyl is generic.  Many pharmacies are buying generics from overseas pharmaceutical companies. Many of those companies are not regulated by any government or medical agency, therefore they can put a lot of buffering/fillers in their drugs:  e.g.  talc, powdered milk, etc; and very little active ingredient.  What is listed as 125 levoxyl may only be about 25 mg levythyroxine and the rest filler.  That is how overseas companies can sell their products so ridiculously cheap.  Ever wonder how Walmart can sell drug prescriptions for $4????    They buy from foreign vendors, and there is no guarantee as to how much actual medicine you are getting.

If you want to give Levoxyl another try, find a small, family -oriented pharmacy - preferably one that know and have used before.  Ask the pharmacist where they get their drugs, and if they will guarantee that generic prescriptions actually contain the prescribed amount of the drug, and no unnecessary fillers.  That is information that as the customer you have a right to know.

If you try Levoxyl obtained from a reputable pharmacy that guarantees their generic drugs, and it doesn't work for you, then go back to the Synthroid.  Generics - even true generic drugs- don't always work for everyone.  But then again, there are many brand name drugs that do not work for some people.  We each have our own biological chemical makeup - no guarantees attached.

If you don't like the Synthroid, try natural thyroid.  Armour thyroid is hormones from dessicated animal thyroids.  It is guaranteed to contain the prescribed amount of drug.  Do some research - many physicians will not prescribe natural thyroid hormones, and many who will do not have experience with prescribing them, so they may need a little guidance from the patient as to what is needed in the way of lab work, and building up to the proper dose.

Sincerely

Tre

Dear Corab, me again - forgot to mention something.

If your mom likes dark chocolate, that might provide an alternative to smoking for some times when she needs to feel good.  I'm talking not about grocery store candy bars - they usually contain 50 - 55% cocoa, and that isn't enough.  I am talking about very dark chocolate, with a cocoa content of 65% or higher, up around 75 - 77% would be best. 

People think chocolate means sugar and therefore shouldn't be a part of cancer treatment.  Dark chocolate with a very high cocoa percentage actually has very little sugar, and almost no fat.  For some people that makes it too bitter, but it eaten with a little bit of grape juice (or even better,  a sip of heart-healthy red wine), it can be quite palatable.

Dark chocolate is not only a very heart healthy food.  Coca is rich in nicotine, and therefore is very good at stimulating release of endorphins and increasing uptake of serotonin (the feel-good chemical in our brains.)  But to REALLY get the effectiveness, it needs to be seriously dark chocolate.

I buy Chocolove - it's 77% cocoa.  I get it at my local health food store.  THere are MANY dark chocolate products that are equally wonderful.  I think the makers of Chocolove also produce a dark chocolate with dark red cherries - that is wonderful combination as cherries are very high in antioxidants, and thus a good cancer fighter. (I DO try to buy fair trade dark chocolate from environmentally green companies - more expensive, but it is a much better quality of product.)

The dark chocolate also contains phytochemicals other than antioxidants that are good cancer fighters.

The best recommendation is 2 - 3 oz dark chocolate/day.  I can't afford that, and I don't always have appetite for that much, so I just try to eat 2 or 3 of the precut pieces a day.

If she likes it, would be a nice way to pamper your mom while it gives her treatment, also.

Sincerely,

Tre

Dear Corab,

I know that the situation seems very frustrating, but there are a couple of things to consider that may help bring clarity.

1. While smoking HAS been proven to contribute to lung cancer, many people who DON'T smoke have also dealt with lung cancer. My aunt succumbed to lung cancer even though she had never smoked a day in her life, nor did she ever live with any smokers. In fact, she lived the entirety of her life on a farm way out in the country – very little in the way of air pollutants to contribute to lung cancer. Why did SHE get lung cancer? ??????

   I worked as an RN for 16 years, and in that time took care of many patients with lung cancer. A surprising percentage of those people were NOT smokers or tobacco-users – yet for some reason the disease came to them. And in all those years I took care of many smokers who never got lung cancer. So, you can't be sure that the smoking IS contributing to your mom's disease.

2. By smoking, your mom may be self-medicating herself. Nicotine is a stimulant – it gives people energy, makes them feel better. It also stimulates release of endorphins – those hormones in our bodies that help us deal with stress and pain. The mouth is VERY rich with blood vessels - that nicotine is absorbed long before it reaches the lungs, and with blood-vessel rich lungs, it only takes another 7 seconds for absorption there! Thus endorphins are released almost imm - taking a drag is a right now feel good, stress-relieving action.

   Even more importantly, nicotine (in any form, whether smoked or chewed) stimulates re-uptake of certain neurotransmitters, especially serotonin – those chemicals that interact with our brains to provide pleasure and a sense of well-being. No wonder tobacco is addictive, just from the psychological standpoint alone: it really DOES make people feel good, just like chocolate and certain sugars make people feel good, experiencing alert relaxation.

   Schizophrenics tend to be very heavy smokers. By smoking, they are in fact self-medicating. Smoking helps them to feel better, without all the nasty side effects of the drugs offered by the drs. But it's not just schizophrenics that self-medicate - it can be any person who is experiencing a health crisis, or indeed ANY person who has an immedate need to feel better.

3. Many, if not most, people undergoing treatment for cancer at some point face a very specific decision process, concious or not, that family members and caretakers may be aware of, or may not understand: choice of treatment becomes a choice of QUALITY of life, vs QUANTITY of life. Chemo, and many other treatments for cancer, are more realistically based at extending "quantity" of life, and sometimes not at all considerate of "quality" of life. A lot of people decide they don't want to be as sick as the chemo will or is making them, and choose to go in a different direction. Or there may be habits they have - such as smoking - that seem to interfere with quantity of life, but for that person the habit enhances THEIR QUALITY of life.

   And remember, when talking about your mom's cancer, her perception of quality of life may be VERY different than yours. Even though as an RN I worked with so many cancer patients, I discovered that I had NEVER had a frame of reference for THEIR thinking and decisions, until I was MYSELF diagnosed and dealt with cancer myself. It doesn't mean that family, friends and caregivers can't empathize, or be well-meaning. It just means that they can't really compare with the patient's/survivor's decisions, because they don't share the same frame of reference.

   (Like when in Star Trek IV: The Voyage Home, Spock tells McCoy that it would be impossible to discuss death with him, because McCoy had never been dead! - bit of levity in the movie, and hopefully in this response! but actually a very valid point!)

Ok, so what can you do to get some peace of mind in this situation? Possibly the best thing you could do would be to accept your mom's decision to keep smoking. Whereas to you her continued smoking may still seem to be a very selfish, self-destructive behaviour, it may in fact be the best behaviour she can exhibit in this situation. Smoking helps her feel good - and with a diagnosis of cancer, treatment, worry about what will happen to her family, etc, etc, etc - she is relying on HER PERCEPTION that smoking DOES help her cope with everything that is going on. So, agree to disagree in principle, but acquiese in fact, and quit trying to get her to stop.

Do, however, ask for some considerations. Ask that she not smoke when other people are around, or that she go outside to smoke if she is able. If she's not able to do those things, then get her a machine that absorbs smoke from the air instead of letting it dissipate into the room. Ask that she tell you when she doesn't feel good, and discuss what immediate things you might do to change that, so that her need to smoke might not be as great. (I don't mean to insinuate that you aren't ALREADY doing that, but sometimes what a caregiver thinks will be helpful isn't really what the patient needs or wants. Best way to find out is to ask.)

There are other ways to introduce nicotine into your mom's body without her smoking. Yes, of course there is the nicotine patch, or gum, or whatever it is the medical community is touting at this point in time. I'm not referring to that - if your mom wanted to do that, she would already be doing it. I AM talking about food and herbs. Many foods, those that are in the nightshade family, are very rich in nicotine: potatoes, bell peppers, eggplant, tomato, cocoa. Nutrition is ALWAYS a key issue for someone living with cancer, and these nicotine-containing foods are healthy choices to incorporate into a diet. (One of the reasons why mashed potatoes are widely considered to be a "comfort food" - it's the nicotine that is unchanged by the preparation process - a real "feel good" food.)

There are herbs that mimic the effect of nicotin - unfortunately I cannot call a single one to mind, and can't locate my list, but a simple internet search will provide the same answers. (I'm thinking that basil is one - I know that some herbal cigarettes have a large basil component.) I'm not necessarily saying to get her herbal cigarettes, but if she would be willing to try them, might be worth pursuing. She'd still be getting smoke into her lungs, but NOT all the tar and other crap that is actually added to tobacco products to make them more pleasure-producing and addictive. Nicotine imitating herbs can be used in many other ways - seasonings, herbal teas, garnishes, etc. Both black and Cayenne pepper can actually simulate some of the "feel-good" effects - just use with caution. Many people with cancer cannot tolerate a lot of spices.

I believe that somewhere in my response, I mentioned patient/survivor. Adopting the mindset that people living with cancer are SURVIVORS rather than PATIENTS can be very liberating to everyone concerned. I've read it here on Cancer Compass, heard other people say it, and I've adopted it myself: The very moment that a person is told they have cancer is the very moment that they became a survivor. Cancer doesn't happen overnight, or in a week, or even in a month. For all but the very earliest of diagnoses, those cancers HAVE to have been there for at least of a couple of months, or even a couple of years to be able to progress to the point of being discoverable. Even though I was diagnosed with breast cancer in 2002, the particular tumor I had could have been growing from 2 - 5 years. By the time I was diagnosed, I have already been surviving cancer for a long time, and even though I was diagnosed 9 years ago, I consider myself to be at LEAST a 10-year plus survivor!!!!

This is true of EVERY person who has a diagnosis of cancer; they have been living with that cancer and SURVIVING, whether they knew it or not! All they need to do now is start LIVING as survivors!!

Sounds very simple, but it's an incredibly exciting concept, and as I said before, can be VERY liberating for everyone involved. Regardless of what treatment someone chooses or doesn't choose, what habits they continue or give up, life IS going on, and every moment of that is a precious gift. If smoking helps your mom better enjoy this precious gift, consider it a weapon in HER arsenal against cancer; if she didn't need it, she would give it up. But it seems she DOES need it, so she also needs for people to accept that choice, and for them to move on to other things that will help her have both a better QUALITY AND QUANTITY of life.

I wish you and your mom and family the very best.

Sincerely,

Tre

From the rheumatology standpoint, if there is any type of adverse/allergic reaction to the transfused blood,  the bone marrow might step up its production of certain cell components so as to fight off the transfused blood.  In that case, a  biopsy taken before the bone marrow had a chance to return to its own "usual" level of funtioning could lead to a false diagnosis.

I think the big question here is how long does it take the body to return to its own usual levels of production after blood transfusion?  Some drs would answer 6 - 8 weeks, but having seen a lot of variations while I worked in nursing, I am not surprised that the rheumatologist is saying 6 months. (The thinking being better to play it safe than sorry, and make sure to get the correct diagnosis.)

But 6 months seems a long time to wait, so I would advise putting the question to both the hematologist and rheumatologist again, telling each one what the other dr said, and asking for their rationale on the time frame they each suggest.  (And ask them to break it down into layman's terms, so that you will understand what they are saying.)

I would also seek a 2nd opinion from a hematology oncologist - someone from an entirely different clinic/hospital.

I hope this helps, and send my best wishes to your wife.  Hopefully she will have a wonderful month in the desert!

Sincerely,

Tre

As a former RN, I can empathize with your doubts and fears concerning Caramen's care and condition.  But as an 9 year cancer survivor  I tell you that as Carmen's wife, you are the most qualified caregiver he has, by virtue of the love you have for him.  Others may know better how to interpret his symptoms, etc, etc, but no one can love him better than you.

I have been extremely blessed with a loving partner.  She is the very best part of my life, and she has stuck with me every step of the way through my battle with cancer.  I am sure that many times she, like you, has had doubts, fears, anxiety, questions she was afraid to ask for which she got answers she didn't want to hear, and had changes to her life that she really didn't like.  Yet she stands steadfast beside me, and I am thus strengthened in my resolve to continue to fight this beast, and to live the best quality of life that I can.

Keep doing what you're doing.  Don't let the interruptions of plans caused by Carmen's condition lead you to despair.  Even if somedays he doesn't recognize you, in his heart he still knows that you love him, and that love  is more nourishment and life-giving to him than any medicine or medical treatment could ever be.

I know it's not easy, and chances are it will become much tougher, but persevere, and believe in yourself.

Sincerely,

Tre

ask your dr about supplementing with high doses of vitamin B6, and also vitamin E

For those seeking basic info, references and web links about low dose naltrexone (LDN) and Protocel therapies, I've added these posts to my blog:

LDN:  http://motherearthtreasurechest.blogspot.com/2009/11/low-dos

Protocel:  http://motherearthtreasurechest.blogspot.com/2009/11/protoce

If you have questions or comments on the post/s, please feel free to contact me either thru Cancer Compass or the email address I've provided in the upper left hand corner of each blog page.

Sincerely,

Tre

Have faith in yourself, and in those around you.  Many people find hidden strength they never knew existed until they had to deal with the inevitable death of a loved one. Please don't forget to take care of your own needs - caregivers who a. don't take time to grieve, to eat, to sleep, b. don't find a way to laugh and relieve tension, to periodically get away from the stress,  and c. don't tell their loved one that they ARE loved, break down.  And a broken down caregiver is no good to anyone.  In that respect, taking the time and effort to take care of yourself is the very best way you can take care of your loved one - that is how you will find your inner strength.  And don't second guess your decisions.  Get as well-informed as you can, think things through carefully, make the best decisions you think you can make, and move on.  Live may seem like either an endlessly painful slow-motion picture or else the roller coaster from hell right now, but you will get through this - one day at a time, one hour at a time, one minute at a time.

And please feel free to write again if you need to talk, someone for support.  That's why we're all here.

Sincerely,

Tre

check back thru the message threads on tamoxifen (and aromasin) - you'll find that many women with the same pain problems.  It's the tamoxifen.  It so completely interferes with estrogen in the body that the bones and joints don't get enough of the hormone to remain healthy.  (We do need SOME estrogen to keep our bones and skin healthy.)  A lot of the drs say the bone/joint pain will go away after a certain period of time.  That's usually not true.  I advise you find a naturopathic practitioner, get off the tamoxifen,  and go the natural route to reduce estrogen availability to stem cancer growth and prevent recurrence.