Hi, Dr. Smith and others:

Dr. Smith, you talked about hormone therapy for chronic pain.

Do you, by any chance, know if levothyroxine (hormone normally produced by the thyroid) has pain killing effects anywhere in the body, even if it is taken in tablet form? My thyroid is being destroyed little by little by my own body (auto immune disease), so I have no choice but to take it in tablet form. Right now, my dosage is one 25 mcg tablet once daily.

Thanks for your information.

[Dr. Smith]

Kitty,

I'm sorry - I don't know anything about that particular one. My thyroid tests have all been normal, so I've had no reason to look into it.

On doing a quick google of levothyroxine, I find that one possible side effect can be chest pain, and another warning of a drug interaction with amitriptyline (there may be others as well).

A few weeks back, I did find something (more) on Human chorionic gonadotropin (HCG) being useful with Intractable Pain in the Health News forum:

http://www.medpagetoday.com/MeetingCoverage/AAPM/25549

Doc

[mrsD]

Fixing any low thyroid issue, leads to improvement of other endocrine functions. That will take some time, and will not be instant. 25mcg is the starting dose for most people. It is not likely to cause side effects like chest pain, in that low a dose. Levothyroxine is not active...it is T4 only. It is stored in the tissues and converted as needed to active T3 slowly.

Anyone who tests low, and is given this low dose, should watch however. But with your two cardiac drugs, you are not likely to feel any side effects. The Inderal which is a beta blocker suppresses thyroid symptoms. It is often used in patients who have Grave's disease and palpitations.

Originally Posted by kittycapucine1974

Hi, Dr. Smith and others:

Dr. Smith, you talked about hormone therapy for chronic pain.

Do you, by any chance, know if levothyroxine (hormone normally produced by the thyroid) has pain killing effects anywhere in the body, even if it is taken in tablet form? My thyroid is being destroyed little by little by my own body (auto immune disease), so I have no choice but to take it in tablet form. Right now, my dosage is one 25 mcg tablet once daily.

Thanks for your information.

Hi, Dr. Smith:

I also feel sooo, sooo sorry. I was really starting to feel sooo happy, sooo hopeful, thinking that the levothyroxine hormone was going to ameliorate my RSD pain and other pains; now I find out it is not the case... It is so unfair! Why me! What did I do to deserve such bad luck! Why do I have such bad karma! The only hormone I can get is not supposed to help me.

All the other hormones, the ones you mentioned, will never be prescribed to me by my various doctors. Why? They will not tell me, no matter how much I ask them. Sometimes, I get a vague "You already take so many medications" as an answer, to which I reply "I already have so many syndromes, diseases, injuries..."

The last solution left to me, if I want to be able to obtain the hormones you talked about, is to buy them on the Internet. I know all these Internet hormones might be counterfeit, but what else can I do?! Nothing, except watch other people go on happily with their lives while I suffer with my baby.

I have my best friend's credit card right next to me and I am getting ready to do just that (order these famous hormones on the Internet). What other choices do I have? Flecaine and Inderal might be dangerous for my heart and the opioids I take will not be prescribed to me in higher dosages by my primary care doctor, despite my tolerance to them. If I insist, I think he will wean or cut me off of them, which would be worse, much worse. So I am stuck, really stuck!

Quote: "On doing a quick google of levothyroxine, I find that one possible side effect can be chest pain, and another warning of a drug interaction with amitriptyline (there may be others as well)."

Not only the levothyroxine is not supposed to help me with the pain, but worse, it is supposed to cause me chest pain. As for amitryptilline, I know I will never take it because it has never worked for me, but what about the other interactions?!

Quote: "A few weeks back, I did find something (more) on Human chorionic gonadotropin (HCG) being useful with Intractable Pain in the Health News forum."

Unfortunately for me, my body does not produce any HCG, probablt due to my not being able to produce children. It is so unfair to see women abort their babies, when women like me do not have the chance to be able to carry one in our uterus.

Anyway, thanks for telling me the truth, as sad as it might be for me. I am a person who likes to know the truth, as bad as it might be.

Hi, mrsD:

Quote: "25mcg is the starting dose for most people."

If you read the "Nightmare at the endocrinologist's" message I posted in the Auto Immune Diseases thread, you know my ex-endocrinologist will never help me. Only my primary care physician will. However, it does not mean he will be willing to increase the dosage of my levothyroxine if it is necessary. Will he even know the dosage increase is necessary? Endocrinology is not his specialty; he is only a primary care physician. I cannot find another endocrinologist in my area who will not call my ex- (old) one to find out why I quit seeing him. When the new endocrinologist hears I do not need help (this is according to the old endocrinologist's opinion), the new one will certainly dismiss me. So there again, I am stuck!

Quote: "Levothyroxine is not active...it is T4 only. It is stored in the tissues and converted as needed to active T3 slowly."

When you are saying levothyroxine is not active, does it mean it is useless for my body when I take it? If yes, then why did the doctor prescribe it to me? Just to stop my complaints about my horrible symptoms and feelings of "thyroid attack"? Why did he not prescribe for me T4 instead, if that is the hormone my body needs?

Quote: "Anyone who tests low, and is given this low dose, should watch however. But with your two cardiac drugs, you are not likely to feel any side effects."

Thanks for reassuring me about this. I feel better now.

Quote: "The Inderal which is a beta blocker suppresses thyroid symptoms. It is often used in patients who have Grave's disease and palpitations."

What do you mean by the Inderal suppressing the thyroid symptoms? I thought Grave's Disease was hyperthyroidism, when my thyroiditis is supposed to lead, sooner or later, to hypothyroidism (Hashimoto's, I think).

Thanks for your information.

[mrsD]

The thyroid makes T4 and T3. T4 is an inactive form that is stored in the tissues and converted as needed to T3. T4 does nothing until it is converted to T3. This is how the thyroid regulates your needs. T3 is made in tiny amounts for emergencies like infections and trauma, in most normal glands.
This can get complicated, but some rare people need T3 also supplemented, but not a large number in most cases.

T4 is levothyroxine. This is the main therapeutic form.

When a person goes hyper, the heart can be stimulated along with everything else. Beta blockers block this effect and are used for the reason. So since you take a beta blocker, you will probably have less risk of any effects from the hormone you were started on.

Your doctor will do TSH like the endo test, and can prescribe accordingly. Many people have their regular doctors take care of thyroid issues. Only extreme problems typically end up at the endo. I go to my regular doctor now, and not the endo anymore (for several years now). She runs the blood work to see if I need any adjustments, which I haven't.

You should read up on this. Anyone on thyroid could use some back up learning.

[Dr. Smith]

Originally Posted by kittycapucine1974

The last solution left to me, if I want to be able to obtain the hormones you talked about, is to buy them on the Internet.

Kitty,

I don't think that's a good idea at all. Hormones, while natural substances, are extremely powerful substances, and can have a profound effect on both body & mind. IMO, they're not to be messed around with cavalierly. You could conceivably wind up with even more inexplicable symptoms and mess up how you feel even worse.

I don't understand your doctors' actions either (I read your Nightmare post), but you really should have a doctor on board with this stuff. You need to be tested for exactly which hormones you need if you're deficient at all, and have some guidance and someone knowledgable to help you through the process - testing & evaluation, how much of what to take, how often, what warning signs to look for, possible interactions with whatever else you take, when to stop, retesting & monitoring, etc.

I don't know how the medical system in France works either. Are you not entitled to a second opinion? Or to just transfer your care to another doctor if the first is not right for you? Do you have any kind of patients' rights that entitle you to answers about your health/healthcare? There are websites to help people find doctors here in the US; I would think that there are in other countries too, and I think finding one to at least order the tests would be a good first step. Then when you know exactly what's what, ask if anything can be done.

I do know something about pain, the process, the desperation, and the stages of grief we all go through with it. I'm hopeful about this therapy too, but I would not be doing it myself without my own doctors' involvement. There is just too much that I don't understand myself.

As patients, we all must be involved in decisions about our healthcare, but it's a joint effort, and there are certain things we should not attempt without a doctor's help, and I think this is one of them.

Doc

Hi, mrsD:

Quote: "T4 is levothyroxine. This is the main therapeutic form."

I thought T4 and levothyroxine were two different thyroid hormones. Thanks for correcting me.

To find the right dosage of levothyroxine for me, my primary care physician just needs to have the thyroid blood test results for TSH? He does not need to re-test other thyroid hormones and antibodies?

Quote: "Many people have their regular doctors take care of thyroid issues. Only extreme problems typically end up at the endo."

I am sooo glad I do not need to return and consult my ex-endocrinologist because he does not want to help me. I could be dead for all he cares. My primary care physician is really different and much better than this ex-endocrinologist.

Apart from thyroid cancer, what kind of "extreme problems typically end up at the endocrinologist's"?

How often do you have blood tests to see if your levothyroxine dosage needs to be adjusted?

Quote: "You should read up on this. Anyone on thyroid could use some back up learning."

I do a lot of research on the Internet about thyroid problems, their causes, their treatments... I do not have access to thyroid books because I do not have a credit card to order thyroid books from amazon.com. I miss the time when amazon.com used to accept bank checks.

I do not even know what kind of thyroiditis I have. My primary care physician did not mention anything about this, so I guess he does not know what kind of thyroiditis I have either. So it is hard for me to do the right research when I do not even know what kind of thyroiditis I have.

If you are tired of answering my questions, you do not have to answer them. You can just ignore them. Right now, I feel some really big depression and anger coming on into me because of my RSD and thyroiditis. Maybe I will post in the Suicide thread, as Chemar mentioned. Thanks for all the information you gave me.

[mrsD]

Kitty, from what you have posted here, you do not have an extreme thyroid condition.

I get my levels tested every other year, since I don't have any of the old symptoms of hypo.

But my problem is not your problem.

Symptoms for hypothyroid are pretty common and can be confused with other things.
In my case I had orange skin of palms and soles of the feet and that was very diagnostic--and I also had a goiter. But fatigue, depression, feeling cold, losing hair, etc that can be due to many things other than thyroid.

You can feel cold from propranolol, and I posted that for you several weeks ago on the RSD forum.

Taking the hormone does not work instantly, and you may take several weeks to see any changes. They are typically slow.

Hi, Dr. Smith:

Like I said in my previous message to you, I am really desperate and, now, depressed and sad. I cannot help feeling this way when bad news after bad news keep coming my way, about one or the other of my chronic health conditions. What is next? A heart attack? A stroke? Cancer?

Not getting the needed and appropriate help from qualified doctors in my area forces me to order medications on the Internet. I want to make it clear that I am not encouraging the other forum users to do the same. I know there are many risks to ordering medications on the Internet but if I do not do it, how long will I be able to go on like this?! I remember a proverb that says: "Who does not risk anything does not get anything."

Quote: "You really should have a doctor on board with this stuff. You need to be tested for exactly which hormones you need if you're deficient at all, and have some guidance and someone knowledgable to help you through the process - testing & evaluation, how much of what to take, how often, what warning signs to look for, possible interactions with whatever else you take, when to stop, retesting & monitoring, etc."

Hopefully, my primary care physician has not only the willingness, but also the qualifications to do all this. Otherwise, I do not know what to do, except cry and cry and cry. I can summarize with three words what my life has been lately: desperation, depression, and sadness.

Quote: "Are you not entitled to a second opinion?" No, I am not, unless I pay the expenses (doctor's fees, echography, blood tests...) out of pocket, which represents a lot of money and I do not have the financial means to pay for all this. No one in my family will help me, especially my rich brother. I have no friends to help me financially. It is the same things with coworkers.

Quote: "Do you have any kind of patients' rights that entitle you to answers about your health/healthcare?" Unfortunately, no. At the risk of seeming harsh, the only right I have, if I am poor, is to die on the street. This way, the public health insurance company saves money on me.

Quote: "There are websites to help people find doctors here in the US; I would think that there are in other countries too." No, not in French Polynesia. French Polynesia is not the paradise postcards show; it is hell for so many people: the poor, the sick, the disabled, the jobless, the homeless...

I posted the thyroid blood test results somewhere, certainly in the Auto Immune Diseases thread, but no one was able to interpret them for me, including my doctor. All he could say is that I have thyroiditis. Which one (there are so many)? I do not know and this really makes me feel life is unfair. Some people in some countries get good medical care, but what about me? Do I not deserve good medical care just because I have the bad luck of living in French Polynesia? I really HATE French Polynesia! Really! What a hellish country! Lately, a German tourist has been killed and maybe eaten in the Marquesas Islands in French Polynesia.

Quote: "I do know something about pain, the process, the desperation, and the stages of grief we all go through with it." This is what I am going through but it does not seem to end.

Quote: "I'm hopeful about this therapy too, but I would not be doing it myself without my own doctors' involvement." You are lucky to have a doctor like that; I do not have such a doctor.

Quote: "As patients, we all must be involved in decisions about our healthcare, but it's a joint effort, and there are certain things we should not attempt without a doctor's help, and I think this is one of them." True, for those who are lucky enough to have a doctor like the one you mentioned.

Thanks for all your information. I hope to be able to apply it.