What should I ask my new endocrinologist?

Discussion in 'Fibromyalgia Main Forum' started by pepper, Oct 26, 2005.

  1. pepper

    pepper New Member

    I have finally convinced my GP to send me to another endocrinologist. Several people on this board gave me the encouragement I needed a few weeks ago.

    I need help in trying to figure out what I want from this new endo. who is very good and very open to new ideas. Which will be nice for a change!

    Thyroid: I have been taking Synthroid and Cytomel (T3) but they never made a difference in how I feel. Someone on this board told me a long time ago that if I didn't feel better, I was either on the wrong med or the wrong dose. What should I ask for?

    My Thryoid blood tests used to show low normal; they now show high normal so my "old" endocrinologist said that it was "fine". I don't think it is fine but don't know what I should be asking for. Any ideas?

    I have very high cholesterol (7.2) In checking other posts on cholesterol, I see that many of you have discovered that high cholesterol can be related to thyroid problems. Is this generally known? Would that be something that would convince this new dr. that I do indeed have thyroid problems?

    Several weeks ago someone (Amanda I think) explained insulin resistance very well. I have been dieting for 10 months and have gone up 2 sizes. What should I tell this dr. to help her get to the bottom of this problem?

    I am so happy that my GP finally agreed to refer me. Now I am worried that I am not sure what I need to ask for. Any suggestions would be appreciated.

    Thank you.
    [This Message was Edited on 10/27/2005]
  2. elsa

    elsa New Member

    I think you need to ask for a reverse T3 with the thyroid testing. Normal testing is TSH, free T3 and free T4. With many of us these test results would not be too far off.

    Mine for example was TSH and T4 in the "fine" range .. T3 not so fine, but o.k.(low normal), rT3 (reverse) too,too high. T4 has a chance of turning into T3 or splitting off and turning into rT3.

    The more rT3 you have, the less available to become T3. Complicated, but with the right diagnosis and doctor can make a hugh difference in your life. I use a compounded T3. I just feel so much better with bio-identical hormones and beginning to love compounding pharmacies.

    I didn't quite get your cholesterol reading.... very high at 7.2 ?? I don't understand. My overall cholesterol is 167, so I am very happy and very blessed with that low number.

    I do know that I don't have to deal with insulin resistence, but I understand that many with fibro do.

    I'm glad he is open to new things. Fixing hormones in CFS/FM patients is tricky. We are out of wack, but not like most endocrinologist are used to seeing and treating.

    Ask him how he feel about treating with bio-identical hormones.

    I wish you well with this. I could tell in your post how excited you are to be going. Having my hormones checked and being on treatment has made a hugh difference in my life and I've just gotten started good. Absolutely worth finding the right doc ... hopefully one familiar with fibro hormone issues.

    Take care ... keep us posted ...

  3. pepper

    pepper New Member

    I will definitely ask for the Reverse T3.

    I am wondering if I should be asking for compounded T4 as opposed to the Synthroid which is doing nothing for me except raising my T4 blood levels. ???

    I double-checked my cholesterol and 7.2 is the number my GP gave me. I wonder if they could have used a different scale for measuring each of ours.

    Does anyone know if the cholesterol-thyroid connection is well known or is this something that I should bring research on to share with the new dr.?

    Thanks for your input, Elsa. I really appreciate it. And you're right. I am very excited to see an endocrinologist who is open to new ideas. I was so frustrated in dealing with the "old" one and didn't know what to do since my GP did not want to refer me to anyone else. I had to get a little snarky with him in order to get the referral!


    Edit: I just checked a web site that helps you interpret lab test results and it says that a total cholesterol of under 200 and LDL under 100 is ususally optimal. I don't know what test my dr. used! But I did notice that someone posted yesterday that her BF's cholesterol was over 8 which was extremely high. There must be two ways of testing cholesterol.
    [This Message was Edited on 10/27/2005]
  4. pepper

    pepper New Member

    for more input.

  5. Empower

    Empower New Member

    Hopefully they will want to check your other hormones, if they don't, I would ask them to

    Make sure they check your Adrenal Gland

    Also, I don't know how old you are, but since you are female, you may want them to check your female hormones.

    Good Luck!
  6. abbylee

    abbylee New Member

    Do you believe in Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities. If he says NO, I'd run for the door.

    Then I would ask one of my doctors to set up a sleep study. Many fms patients have alpha wave intrusion and are given Xyrem. I spoke with a woman today who is in her '60's, and she told me that after 4 weeks on Xyrem she was thinking about going back to work!!!

    I've been taking it for 2 years and while I'm not ready to go back to work, I am considerably better.

    As for cholesterol, my last test was 325. Needless to say, my doc was very upset. I'm leaving off ice cream and other dairy products.

    [This Message was Edited on 10/27/2005]
    [This Message was Edited on 10/27/2005]
  7. elsa

    elsa New Member

    When given a choice I like the bio-identical hormones better then the synthetic versions so yes, I would asked to be swithched.

    If you are like many other CFS/FM'ers, you'll need some T3 help too. It's my understanding that T3 is the one with the "juice". T4 is available for conversion when a healthy body signals a need to convert. It then becomes T3.

    I'd ask him to check every possible hormone in the body. I also second Abbey's statement about making sure he can treat hormones as they relate to CFS/FM. Otherwise, it may turn into a frustrating and costly avenue.

    Please let us know how it goes. ..... Elsa
  8. pepper

    pepper New Member

    Empower, I am 57, so checking my female hormones is probably a good idea. It never occurred to me to ask for that so I am glad that you mentioned it. And adrenals too. I suppose it would be too much to ask her to do the cortisol saliva test. I have no idea who I can ask for that.

    Abbylee, the new endocrinologist that I am going to see is female and she does believe in CFS, FM and MCS. That is the main reason that I wanted to see her. I had a sleep study done and was dx'd with mild sleep apnea and use a CPAP. However, I do not know about alpha wave intrusion but will contact the sleep study doctor and find out. She may have told me but it meant nothing to me and no one has offered me Xyrem. I will have to check that out. Thank you for that info.

    Abbylee and elsa, I guess I would have to assume since this dr. believes in CFS/FM she will know how they relate to all my problems. I have stopped trusting doctors to know more than I do and feel that I should be the one who has done the research before the appointment.

    Maybe there is just too much information out there for the doctors to know it all but since she is a specialist I hope that there is a better chance that she knows what she is doing.

    Maybe I should do as Elsa suggests and just ask her to test every darn hormone in my body. The problem is that my research indicates that the thyroid in your blood does not necessarily indicate the amount of thyroid that is actually working. I don't know how they find that out.

    Thanks for your help.
    [This Message was Edited on 10/27/2005]
  9. LittleBluestem

    LittleBluestem New Member

    I read somewhere (this board, maybe) that the saliva test is now the preferred adrenal test for post-menopausal women. I don't see any harm in asking your new endo to do it. If she says "No", then you can look for someone else to do it.
  10. pepper

    pepper New Member

    I remember reading the same thing about the cortisol testing on this board. I think that naturopaths did it for those people but am not sure.

    Naturopaths in Canada do not have the same rights as naturopaths in the U.S. and elsewhere and cannot request those tests.

    The endocrinologist might be the only one who can do it here. So it can't hurt to ask.

    Thank you.
  11. pepper

    pepper New Member

    I have heard that not all thyroid problems show up in the blood either. But I did not know that there were more specific tests (other than the Reverse T3) that I could ask for. So I will ask.

    In researching for this upcoming appointment I came across a very interesting interview with Dr. David Derry who treats CFS/FM people with thyroid (compounded I think) regardless of their blood levels. Supposedly he has had a lot of success.

    And the pineal gland. I will have to check that out too.

    Thank you for your input.

  12. elsa

    elsa New Member

    I hesitated to mention it, but yes many cutting edge CFS/FM doctors are treating with compounded thyroid rx'es regardless of what the blood tests reveal.

    They are acting like doctors of old (as my mother puts it), listening to the patients symptoms, taking in considration things like their basil body temp, etc and treating accordingly.

    Blood test levels are based on a hugh statistical average from a hugh base ... Your body may have nothing to do with the "hugh base".

    If I hadn't had a rT3 number that was obviously out of wack, I would have asked to be treated based on my symptoms.

    That's why I searched hard for a doctor who understood not only CFS/FM hormone issues but who also believed in listening and treating the patient based on symptoms. The blood tests results are viewed as a resource in diagnosing the the entire picture ... not as the defining end all, bet all in deciding how to treat. Basically, an integrated doctor based on his beliefs in treating the whole picture.

    I was not comfortable with traditional endocrinologists as I was afraid they would use the test results only in deciding how to care for me ... and not how I was feeling.

    I believe so strongly in this that my husband and I saved our $$ for a long time in the off chance that I might have to travel to see a doctor I felt was the best chance to "fix" my hormone problems. We didn't have to in the end ... but we were ready.

    This is such a long post ... I apologize for that. I just feel so strongly about this. If you would like more information on compounded thyroid treatment for people like us regardless of what the blood tests show you can google Wilson's syndrome. I don't hold 100% with this W.Synd. treatment, but pretty darn close.

    Good luck, Dear... I know I got wordy here ... I just want you to have a chance to feel better. Please let me know what you think. I apologize if I have overstepped.

    Take care,

  13. pepper

    pepper New Member

    An endocrinologist addresses all the hormones in the body, including the thyroid. I know that most of the people in the waiting room think that I am there for diabetes and share their stories with me. They seem very surprised when I tell them that I am there about my thyroid.

    So the answer to your question is yes, an endocrinologist will treat your thyroid. The probem is that most of them are very "old school" and rely on blood tests alone for treatement. And they are not always accurate.

    I hope that you can find one that will listen to you. Elsa's post right after yours explains exactly what we both need to find.

    Good luck.
  14. pepper

    pepper New Member

    This is exactly the sort of information I have been looking for. Have you been taking the high doses of compounded thyroid? Do you feel any better?

    I am so hoping that this endocrinologist will be open to doing exactly what you wanted as well - listen to my symptoms and treat them, not relying on blood tests to tell the whole story.

    My "old" endo listened to my story about weight gain despite months of dieting and he said that it "sounds like" I am insulin resistant. However I "can't be" hypothyroid because my blood tests are normal. And my BP is "fine" - yes it is, on high doses of BP meds.

    So when I asked him what I could do about it he said, "Good question!" and proceeded to type up my blood requisition for next year and my Synthroid and Cytomel prescriptions and said, "See you next year." That was it!

    I was determined to see someone who would really listen but it took some talking to convince my GP that he should refer me. It is so frustrating to have to beg to see someone who might be able to help. That is why I am so happy to finally get a referral.

    I hope she lives up to my expectations.

    I did investigate Wilson's Syndrome years ago but no one would pay any attention to it when I mentioned it. I will look into it again. I have a gut feeling that my thyroid may be one root cause of my DD's and at least want a chance to try this treatment.

    Thanks so much for your input, Elsa.
  15. kgangel

    kgangel New Member

    Thank you both, love you guys, looks like my hubby and I will be able to use the same Endo doc.

  16. pepper

    pepper New Member

    I sure hope it works out for you!

  17. elsa

    elsa New Member

    In my effort to find the right doctor to treat my hormones, I started by looking for doctor's who treat according to Wilson's Synd. and followed the signs. That didn't turn up much for me just because of my area, but it might help others.

    I had the best success by putting "anti-aging doctors" in google search and then my location and came up with hits.

    This is a board certified specialty area ... not just a fly by night deal. The are more likely to listen to the patient and treat outside the box.

    Another option for you is the FFC Hormone Treatment Plan. They have this available for anyone .... don't have to have CFS/FM to attend. The package is for two 30 minute visits and of course the lab work is on site and directly billed to your insurance.

    My sister goes to the one in Dallas for this treatment. She does not have CFS/FM , just some really messed up female hormones, plus others and didn't agree with the stereotypical "If it's female and causing problems then either throw synthetic estrogen at it or remove it" ...

    She wanted bio-identical, compounded treatment for what ever needed balancing. She is doing much better ... and without a hysterectomy.

    This FFC package tests general hormones plus thyroid. They send out a 7 or 9 page (can't remember what my sister said) questionaire for you to fill out before appt. and they do a bit of a physical exam. They charge 299.00 for this.

    They also do a total CBC on the blood work ... not just certain hormones. My sister asked for the "test 'em all" route that I mentioned earlier ... resulted in more lab costs, but not more $$ to the FFC for Dr.'s time.

    It is definately worth looking into if you can't get this new endo to go in the dirction that you want your hormonal treatment to go in.

    I requested my doctor run the same exact tests my sister had done .... copied her paper work, LOL .... and I use the same compounding pharmacy. I mentioned to Lynn ( another FFC patient/member here )that I am the closest one can get to being an FFC patient without being an FFC patient!! LOL

    If you are not interested in any of the other CFS/FM treatments at the FFC or if $$ is a concern, then it's no problem just getting the hormones addressed. Think about it as an option if this one doesn't work out or you're not satisfied with results.

    I whole heartedly believe that if we address infections, sleep disorders, nutritional deficiencies and hormone imbalances, we truly have a fighting chance for remission and good quality of life.

    Kgangel ... I'm glad I could help. I spent so much time and focus researching and learning about what my options were, that I'm happy to turn it back to others struggling for a foothold against CFS/FM. I'm in early remission ... finish the hormones and I'll be in full remission ... I hope!

    Oh, almost forgot Pepper ... I am not on high dose T3 yet. We aren't going in the complete Wilson theory, but I imagine we'll go as high as needed. One of the guidelines besides the dang blood tests LOL, is if I start to feel jittery, shakey, sweat too much, rapid pulse, etc, then we should take a step down. I liken the feeling to the same as too much caffeine buzz.

    I'm early days yet with the thyroid treatment, so I don't know what my level-off dose will be. I just know he won't give up until I feel better ... And I didn't have to beg! Also, you don't need a reference for the FFC if you don't like this doctor.

    I'll keep my fingers crossed for you!

  18. pepper

    pepper New Member

    I hope that you will continue to keep us updated on your progress. I will be watching.

    I may also want to pick your brain in the future as I get into this treatment plan. I have no idea what this endo will do for me but I am hoping.

    Actually, the FFC would be my first choice but I live in Canada far away from any FFC. I emailed them when I first heard that people on this board were having some success. They said that they are "thinking of" opening some centres in Canada but there were not definite plans yet.

    If I cannot get what is needed here, I will consider travelling to the U.S. for the treatment. I will look into that when the time comes.

    Meanwhile, my DH will have to find a job to come up with the $$$.

    I really appreciate your sharing your experience and knowledge and hope that this works for you.

    I will be posting after I see this endo for input from the members here.

    I don't know what I would do without this board and the incredible amount of research done by the members here.

    Thanks so much. Good luck!

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