endo says "get a new rheumy"

Hi everyone, I hope this post finds everyone feeling well today!!! I have posted a couple of times before, I have had hypothyroidism for 15yrs now and my GP just kept increasing my thyroid meds up to 224mcg per day. My GP finally ran some different lab work and it came back for a positive ANA (1:320). Refered me to a Rheumy who ran additional lab work. Came back with positive ANA (1:640) elevated thyroid micrsomial antibodies >1300, low Vit D and low Ferritin. The end result from the Rheumy was go see an endo and you have Sjogrens as well. He put me on Aleve, Vit D 50,000 per day and 975 iron per day. I saw the endo today and he said I definetaly have hashimotos and #1 you should not be on that high of a dose of thyroid medication based on your weight and height. The max dose for you would be 100mcg. #2 your Hmg and Hct are fine, in the normal range, you do have low ferritin enymes however they are not affecting your blood counts, you should not be on iron. #3 you should not be on 350,000 of Vit D per week, the max would be 50,000. The rheumy also told me that my ANA was elevated due to the overflow of thyrooid antibodies...the endo said this is not true. My endo said that my symptoms indicating mult autoimmune things. The rheumy also said he could not see any apparent inflammation, but the endo said he could obviously see the inflammation in my hands on my fingers and knuckles. (I have not been able to wear my wedding rings for a year now). I will tell you though, my sed rate and CRP were in the normal range. One last test result, elevated CPK..the rheumy said it was because of my thyroid, the endo siad it was due to injury to muscles...which would explain why I have the muscle pain. The final thing he said was that I should find another rheumy...this totally surprised me because my rheumy said that he would not send me to any other endo.
I am sorry for rambling on...has anyone else experienced information like this? Two doctors completely different in theories. Also, I don't want to get hooked up with another rheumy who isn't perhaps as experienced with auto immune disorders. I have a very strong family history, my sister has Type 1 diabetes, and hashimots, my other sister has hypothyroidism and Lupus, my mom had RA. I have read all of the Lupus resources posted on healing well..and I have many of the criteria needed for a dx...sore joints and muscles, nose and mouth sores, rash on face and other parts of body, positive ANA test x 2, headaches, sensitivity to sun, morning and evening stiffness, numb and tingly feet and hands, cold sensitivity...loss of my hair. I think that covers it.
I live on the Central Coast in California...does anyone on this forum know of any reliable rheumys this way???
As always, I rely so much on your advice and words of wisdom! Thank you!!!
Diana

Hi Diana, Hurray for your Endo !!! Most doctors won't suggest that another doctor be replaced. They tend to cover for each other . . . so it is uplifting to see this doctor keeping your best interest first. Hurray!! If you look at the end of my signature, there is a link for "Lupus Chapter Locator". If you click on that link and find your nearest chapter, they should be able to give you some referrals. I would highly recommend attending a local meeting, if support group meetings are available anywhere nearby. I was able to chat with several other lupans and quiz them about their rheumies and doctors and it was a great help in choosing my rheumy. It is not uncommon to have to wait for months for a first appointment with a good rheumy, so be prepared for that. I'm so glad that you are getting some answers!! Keep us posted! Blessings!

Hi,

Here is what happened to me.  I was diagnosed with Graves disease in 1986 and vitiligo about the same time.  Had radioactive iodine treatment and then replacement of the thyroid hormone.  Then, in 1993 or so I had my regular thyroid level checkup.  It said I was overreplaced and they lowered my dose to one lower than I had ever taken.  Not long after that I began having strange symptoms including being very tired, cold, skin was strange, many, many aches and pains and there was also swelling around my eyes.  I had very bad stiffening of my muscles. 

I made an appointment with a rheumatologist thinking that I was getting rheumatoid arthritis like my mom.  Naturally, he checked an ANA and, believe it or not, it was positive.  He then checked all the more specific tests and they were all negative. 

Finally, after thinking I had lupus, I went back to the endocrinologist and they checked my thyroid level and it was the lowest it had ever been after they changed the dose, way below normal.  They increased the dose again and my symptoms went away.  They were all due to the abnormally low thyroid.  No one had warned me about symtpoms due to low thyroid.  They are terrible, truly terrible.  It is now 16 years later and I still have a positive ANA but no lupus and no symptoms of lupus.  We finally quit checking my ANA. 

Georgia.

Hi Diana, I'm sorry you are having such a hard time. I'd love to tell you some of my horror stories but since I got taken off steroids I am having a hard time typing. The only reason I'm up now is because I hurt to bad to sleep. I just wanted to say to keep an open mind. Your endo isn't a rhumy and your rhumy isn't an endo. They may both be wrong or both be half right. I have had dr.s that Made me so mad. and I think my 8 year old granddaghter could do a better job. I walked out on my last gastrointerologist and he deserved to get .

Anyway I just hope you get a good one and they get you on the right meds that will really help you.

hugs

Please do see another rheumy, often times doctors will just cover for each other when you find one who says find another whatever kind of doctor listen because sometimes they know things they can't say because of legal reasons. My rheumy listens and treats me according to symptoms not blood work. When my pcp was being impossible with my husband she recommended he see her once for a consult and that we find a new pcp. Turns out my husband is hypothyroid and has RA. His thyroid is now controlled but the RA symptoms remained so she dxed him and is treating him accordingly. Had she not said you need a new pcp my husband might have had serious complications from his hypothyroid condition. It took a couple tries to find a decent pcp but we finally did. What I am trying to say here is that doctors don't usually say find another whatever kind of doctor unless they have a darned good reason. I hope you got a good new rheumy or get a good one. It sounds to me like there is definately an autoimmune issue going on but I am NOT a medical professional just someone who knows what it is like to have undiagnosed autoimmune issues. If you have 1 autoimmune(AI) condition (like your thyroid issues) you are more prone to get other AI issues. So you need to be careful when things like ANA and RF come back positive and have a second opinion. With how you are feeling I honestly think a 3rd and 4th opinion if the next rheumy agrees with the 1st would be in order.

congrats on the appointment. that is awesome news.

Just got home from my appointment with the new Rheumy. DX: SLE, Sjogrens, Hashimotos, scoliosis and arthritis. Sad for the dx, but also relieved in a way. I finally feel like I am not going crazy with the way that I have been feeling and all of my symptoms. Thank you all so very much for all of your words of wisdom and encouragement everyday on this forum. God bless all of you!!!

glad you finally have the dx looks like you got tx as well. I really hope things improve for you though most tx take time to work.

Hi Always Rosie,
She is starting me off on a Prednisone tapering challenge for 2 1/2 weeks, also during this time frame, I am to see an eye doctor make sure the eyes are ok because I have deposits on my retinas, Physical therapy for the scoliosis and keep a daily journal on my swelling, pain, stiffness and fatigue and any other symptoms, When I return to see her after the Pred challenge...she said she will review my journal and try to determine how much pred I need to have a quality of life and introduce some other medications at that time. She said that I should not be on the Pred long term. I can tell you that on day three of the Pred. I felt like my self again. Energy,minimal pain, swelling starting to decrease...there is however one small thing...I have gone from total exhaustion to insomnia. I am on day five and last night I was completely unable to fall asleep. My rheumy warned me of this and indicated if this happens to decrease the dose by one pill. Any thoughts??? I am worried that I will fall back into the same scenerio prior to the pred. My appt with the rheumy is not until June 3rd.

Diana--
The amount of thyroid med depends on the type of thyroid med you take. I was on 75 mcg of synthroid, but the equivalent dose of Armour thyroid is 45 mcg.

I can tell you that every endo I have seen has told me that 150 mcg of synthroid is the amount they give people with no thyroid, in other words, its the total replacement amount. Giving you too much is really bad. Perhaps your body is not using the thyroid hormone properly due to problems with estrogen/progesterone balance. You might try a third "voice of reason" by getting a consult with an OB/gyn who specializes in bioidentical hormone replacement. They got my thyroid down totally to normal and I feel great and take less estrogen. They claim women need progesterone to properly metabolize estrogen, that thyroid hormone can bind with the "bad" estrogen and so thyroid treatment doesnt' work well. I found this to be true.

I also had the same problems with my ANA and anti-thyroid antibodies were well over 1000. They are normal now and my ANA is still elevated mildly. I take plaquenil, which helps. I don't know if it has any effect on the thyroid antibodies at all. Synthroid and other thyroid hormone replacements are used for that.

My thyroid antibodies went down to 500 on synthroid, but went down to normal once I started using progesterone along with my estrogen. Even endos don't usually deal with estrogen/progesterone much.

It does sound like you are on to much of the thyroid, but it also sounds like you are insensitive to the hormone, you should be really sick from it, and like maybe a bioidentical hormone ob/gyn doc could give you some information to fill in the gaps and help you make a better decision. They also test all your vitamins and can also advise you on the vitamin D. Then you will have a more objective opinion.

There will be no way to tell if you have autoimmune disease, like Georgia says, while all this is a mess. The thyroid causes severe neurological problems, especially numbness in the extremities, and all kinds of problems. THe endocrine system affects every part of your body and arthritis and diabetes and liver disease can develop and all run rampant while this stuff is out of whack. Having high antithyroid antibodies can lead to hashimotos encephalitis, which can be life threatening.

I would definitely heed the endo, at least on the endo stuff, like the thyroid hormone. Try the bioidentical ob/gyn and get your estrogens tested and vitamins. Maybe you might do better on a full thyroid hormone replacement like Armour, rather than an incomplete, single hormone replacement like synthroid. You don't need to make a decision about the rheumie right away, just get some more info.
I hope you feel better. BTW Mary Shoman has the best thyroid site, and there is info about hashis encephalopathy. You might try checking there about your thyroid hormone dose.