13 replies to this topic

[mlk210]

Hi! I just finished my fourth month of treatment. 100mg of Sprycel. I also had thyroid papillary carcinoma in September resulting in a total thyroidectomy, which added hormone supplements to my regime! Synthroid (t4) and Cytomel (t3). 

 

I went to my doctor for our annual insurance physical exam and I just got the call about my blood work. Everything looks good except my Vitamin D and B12 which I had asked her to check for me. 

 

She wants to put me on a prescription of Vitamin D for one month and then supplements after that. For the B12 she wants me to have weekly injections for the first month and then monthly after that. 

 

I never asked for these levels to be checked before CML and Sprycel so I could have had theses deficiencies before, but does anyone know if it's a cause of it? Have any of you had the B12 injections and will either of these interfere with the Sprycel? I plan on calling my onc tomorrow but wondered if anyone else here had experience in this? it's hard to figure out what is just me, the Sprycel, The CML, the thyroid meds, or the missing thyroid these days!

 

Thank you!

[Trey]

It is not believed to be a direct relationship from what is known.  Many people have Vitamin D deficiency due to lack of sunshine exposure.  Vitamin B12 is mostly obtained from meat and milk, so if intake of these is low it must be obtained by supplements.  Some people have trouble absorbing Vitamin B12 from foods due to lack of "intrinsic factor" in the stomach.  So if it is injected that would bypass the absorption issues. 

[mlk210]

Thank you Trey!

[Sneezy12]

What were the values? Frank

[mlk210]

Frank - 

 

I'm a little concerned now because when I went to get the B12 injection I asked for all my blood work paperwork. After I left I noticed my B12 was low normal, still in normal range, 323 (200 is the low end). From what I hear it won't hurt me getting the injection, but I am curious why it's being injected instead of treated orally. I don't believe I have any reason why I don't absorb B12. I have a  call into my doctor. My Vitamin D was 13 (normal 30-100). She ordered me 50,000iu once a week for a month and then over the counter vitamin D. 

 

The research I've done suggests people with thyroid diseases are usually low in vitamin D, so maybe that's the reason for being so deficient in it. That and living in gloomy Chicago without much sunlight these days!

[chrissy778]

Hello, I was just wondering if you had any symptoms like muscle and joint pain. I have had muscle and joint pain for a few months but my Dr thinks it may be a side effect from the Gleevec. I have been on Gleevec for over a year with no symptoms could it happen after all this time? Thanks Chrissy

[gerry]

Muscle and joint pain got worse for me over time, wasn't an issue initially. I also had odd side effects pop up every now and then and then disappear. TKIs seem to affect people differently.

[chrissy778]

Thank you Gerry

[mlk210]

Chrissy,

 

I haven't had a lot of muscle/joint pain. Little twinges here or there, but I'm only 4 months in. I felt pretty good, but had been on a few sites about thyroid where people said get your vitamin d and b12 checked. So, I asked my doctor to check them since I was there for an annual physical. I'm surprised at how low my vitamin d was because the only symptom I have is a discomfort along my left chest. Right above my breast and down to my armpit area. I've had all the heart tests. chest x-ray, ct scan, Echocardiagram, stress test with echo and all come back normal. Now I'm going for a mammogram just to make sure it's not something else. So, I'm not even sure that's related to the deficiency of vitamin d.

 

The odd thing is, my doctor gave me 50,000iu of vitamin D to take once a week for four weeks. I took the first pill last night and all day today I had joint pains. Who knows what it's from, but today I'm blaming the vitamin d deficiency. Tomorrow it will be something else.  LOL 

 

It's just a simple blood draw if you want to double check yours.

[chrissy778]

Thank you, I have been looking at my blood work and it says MCV 99.5 which is high but not out of range. Also my red blood count is low at 3.83. I was thinking of having the B12 checked so I will ask for the Vit D also. Thank you for your post. I had to laugh when I read your tomorrow it will be something else. I understand completely. I have had discomfort under my left rib, more like a full feeling. I had a cat scan, ultrasound, endoscopy there is nothing. Then I was dizzy for almost 2 months and had a Mri of my brain, came back fine. Now I have this muscle joint pain only in my arms since Oct. My husband says I am a doctors nightmare...

[mlk210]

LOL Chrissy! I'm with you on that! I told my onc, "one day I'll come in and not have an issue." He laughs and is always willing to look into my symptoms in case they aren't side effects of the TKI's. It sounds like your doctor is the same, which is good, but I feel like a loon sometimes. Especially when things come up normal. I've always been a laid back person, never stressing over much. But this disease has thrown me for a loop and I told my husband, I feel so out of tune with my body (I'm sure that sounds crazy). 

 

Yeah if you're having your B12 checked you might as well get vitamin d. I hope it turns out well for you. I'll keep you posted if some of my symptoms go away when my vitamin d comes back into normal range!

[chrissy778]

On your earlier post about having it injected instead of taking it orally, I was told by the pharmacist that its better to have it injected because the oral vitamin B12 you just pee out and nothing really gets absorbed into your system. Just a thought....

[mlk210]

Oh thank you, Chrissy! It's odd, I feel worse since the shot and taking the vitamin d! I guess it will take time though!

[chrissy778]

I have a appointment next week, I will let you know. I hope you start to feel better soon...