[Dianem]

MGUS, a bone disease?

by Dianem on Fri Jun 07, 2013 12:31 pm

Hi - I'm wondering if my situation is typical. I was diagnosed with low thyroid at age 40 along with osteopenia. The endocrinologist said low thyroid with early bone loss is common - started Synthyroid. At age 50, started taking Boniva, but stopped due to dental issues. At 56 (fall of 2011) was diagnosed with MGUS and told it is common with low thyroid.

Yesterday, my endocrinologist said I must start seeing her every 6 months (with a blood test) rather than once a year. The reason is because I have MGUS, low WBC (has been 4 or less for 7-8 years), and bone loss. She said MGUS probably contributed to the bone loss/disease and low WBCs. I asked what contributed to 16 years of bone loss and 7-8 years of low WBC before MGUS and she wasn't sure, but said both are common with low thyroid and MGUS. Another 'red flag ' is the IgG G is 1400 - the next blood test will look for other 'markers' involved with immune issues since I'm at risk.

I see the hemo- oncologist once/year with a blood test every 6-8 months. Is it common that once diagnosed with MGUS we must be monitored more often for other markers by an endocrinologist? Wouldn't the oncologist be the one to focus on blood issues? Maybe I misread the oncologist, but she didn't seem that concerned with the IgG of 1400 or the low WBC. My profile is IgG MGUS, trisomic 7, and a spike of 1.5. Thanks

[Multibilly]

Re: MGUS, a bone disease?

by Multibilly on Fri Jun 07, 2013 7:59 pm

If I were in your situation, I would just ask your oncologist/hematologist to include a thyroid panel in your biannual multiple myeloma tests. You or your oncologist can easily spot any changes in your thyroid markers without having to go see yet another specialist (esp if you have your earlier results). If you do notice a meaningful change, then you can go to an endocrinologist to tweak your synthroid dose (if you were like me, it took a few tweaks to my initial synthroid dose to get my thyroid-related blood levels right...and it involved very small microgram differences in my synthroid doses).

Seems like most of my docs are pretty flexible when it comes to things like this and both general family doctors and hematologists can deal with basic thyroid issues. Anyway, this is what I would try to do to save time, $$ and avoid seeing yet another specialist, which would include separate blood draws and tests. Just really depends on your hematologist...mine is very accommodating.

As a side note, here is a really interesting overview on the role of thyroid hormones and plasma cell proliferation.

http://myeloma.org/ArticlePage.action?articleId=2826

[Dianem]

Re: MGUS, a bone disease?

by Dianem on Fri Jun 07, 2013 10:25 pm

Thanks Multibilly - I listened to the link and if I understood correctly, low thyroid hormones appears to maybe have a protective effect on the proliferation of malignant plasma cells? That is interesting since many with hypothyroidism have MGUS, SMM, and multiple myeloma. My endocrinologist said during our visit that having an autoimmune is a breakdown of the immune system and this is why precancerous conditions like MGUS are common.
Yes, I was used to having two dr apps per year; well women/mammo and endocrinologist and now include the annual oncologist. Hopefully she will agree to do the thyroid testing which has been stable for 16-17 years! Thanks