Well, the creatinine level that is typically used as the threshold for meeting the "R" in CRAB is 2mg/dL. 2mg/dL = 177 umol/L, so you are well below this threshold at 82 umol/L.
I'm not a doc and others may have different opinions, but It seems like your doc would be pulling the treatment trigger a bit early based on your M-spike and creatinine level.
Can you get a second opinion in your health system?
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Thyroid hormones and multiple myeloma
Thanks Multibilly. I can get a second opinion and I'm trying to find out if we have any myeloma specialists in South Africa. My integrative doctor is also trying to find out for me. I don't know anybody else with MGUS/myeloma (except my dad who died at 46 in 1975) and neither does she!
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Spanish Mary - Name: Spanish Mary
- Who do you know with myeloma?: Self, MGUS
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 59
Re: Thyroid hormones and multiple myeloma
Hello Spanish Mary,
If you check the Beacon's list of members of the International Myeloma Working Group, you'll find one member of the organization is from South Africa.
Peter Jacobs, MD, Constantiaberg Medi-Clinic, Cape Town, South Africa
If Cape Town is too far from where you are located to be practical for you, perhaps Dr. Jacobs or his staff will be able to recommend a myeloma specialist closer to you.
Good luck!
If you check the Beacon's list of members of the International Myeloma Working Group, you'll find one member of the organization is from South Africa.
Peter Jacobs, MD, Constantiaberg Medi-Clinic, Cape Town, South Africa
If Cape Town is too far from where you are located to be practical for you, perhaps Dr. Jacobs or his staff will be able to recommend a myeloma specialist closer to you.
Good luck!
Re: Thyroid hormones and multiple myeloma
Thank you so much Beacon Staff. Cape Town is a two hour flight away and can be done. Your support as always is appreciated.
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Spanish Mary - Name: Spanish Mary
- Who do you know with myeloma?: Self, MGUS
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 59
Re: Thyroid hormones and multiple myeloma
Well, this is a long-time follow up to the effort of titrating down on levothyroxine. Much to my surprise, I was able to titrate down from 112 ug to 100 ug and maintain all the correct thyroid levels over the span of a year. I then switched to 88 ug about 6 weeks ago and again was able to maintain my various thyroid levels. I will try 75 ug in a few months and see if my luck holds up as I go down to the next dosage level.
To be clear, I'm doing all this under the guidance of my GP.
To be clear, I'm doing all this under the guidance of my GP.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Thyroid hormones and multiple myeloma
I take my Eltroxin (levothyroxine) when I get up to go to the bathroom early in the morning (5 am). so my stomach is totally empty. I think that is key when trying to maximize the absorption of thyroid meds.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Thyroid hormones and multiple myeloma
Lys2012,
Yeah, my doc used to think that same way and that is how I first started taking levothryoxine as well when I started many, many years ago. But then he recently recommended I switch to bedtime dosing, per the recommendations of some recent studies.
I have wondered if my switch to bedtime dosing is what is now allowing me to titrate down on my dose? When I first started taking levothyroxine, we had to keep upping the dose until I could get my thyroid hormone levels right. But now I am successfully able to lower my dose by quite a bit while maintaining those same thyroid levels.
Yeah, my doc used to think that same way and that is how I first started taking levothryoxine as well when I started many, many years ago. But then he recently recommended I switch to bedtime dosing, per the recommendations of some recent studies.
I have wondered if my switch to bedtime dosing is what is now allowing me to titrate down on my dose? When I first started taking levothyroxine, we had to keep upping the dose until I could get my thyroid hormone levels right. But now I am successfully able to lower my dose by quite a bit while maintaining those same thyroid levels.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Thyroid hormones and multiple myeloma
Hi Multibilly,
Since reducing your thyroid replacement hormones, has your M spike changed? As you may recall, my first M spike (1.0 g/dL) was picked up during a routine endocrinologist visit 4 years ago. A month later my hemonc had my blood tested at Lab Corp and the spike was 1.5 g/dL. Before the first spike, I had been taking 112 ug Synthroid and started taking 100 ug, then 88 ug. Over the past 4 years the spike went from 1.5 to 0.8 (all assessed at Lab Corp) and thyroid levels are staying in the normal range. Now, I skip a dose every other Sunday and everything is the same.
The other positive of reducing Synthyroid is I sleep much better. Have you noticed other changes too?
Diane
Since reducing your thyroid replacement hormones, has your M spike changed? As you may recall, my first M spike (1.0 g/dL) was picked up during a routine endocrinologist visit 4 years ago. A month later my hemonc had my blood tested at Lab Corp and the spike was 1.5 g/dL. Before the first spike, I had been taking 112 ug Synthroid and started taking 100 ug, then 88 ug. Over the past 4 years the spike went from 1.5 to 0.8 (all assessed at Lab Corp) and thyroid levels are staying in the normal range. Now, I skip a dose every other Sunday and everything is the same.
The other positive of reducing Synthyroid is I sleep much better. Have you noticed other changes too?
Diane
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Dianem
Re: Thyroid hormones and multiple myeloma
I was diagnosed with Hashimoto's Thyroiditis after a miscarriage in 1996. My TSH levels have always been a mite challenging to maintain within normal range, often slipping into very hyper or way hypo (no explanation ever found/given for the fluctuations). A little over a year ago my thyroid levels got so whacked that I went from normal TSH range - on the same dosage I'd been taking for 20 years - to a TSH over 200, with antibodies over 205. I was immediately hospitalized, IV synthroid of higher dosage given, along with lots of blood/urine tests & imaging. They finally got me down to a TSH of 46, then switched me back to oral. By my follow-up appointment, I was already hyperthyroid again: 0.04. #sheesh
Here's what I feel is relevant to this thread: this past September, when my routine MGUS tests were done (diagnosed in 1998), my K/A Ratio elevated more from the last check-up/set of labs to this current/most recent set of test results, than in all of the previous years added together. So, question is, thyroid related? I think this is a area of inquiry worth pursuing.
I have two hematology/oncology consults pending (appointments 11/16 & 11/24 - as well as an application to a fancy-schmancy Endocrinology practice that only accepts certain "complicated case" patients. Fingers crossed for some answers - for all of us - very soon.
I also have MS, so I'm very eager to separate out which of my new & worsening symptoms that may belong in the hematology/oncology category and/or endocrinology category. I refuse to initiate new/more intensive therapeutic medications for MS when/if the symptoms could be attributable to something other than brain/spine, neurogoical-immunological origin.
Best of luck, everybody; please keep all of us informed!
Take care,
Denise
Here's what I feel is relevant to this thread: this past September, when my routine MGUS tests were done (diagnosed in 1998), my K/A Ratio elevated more from the last check-up/set of labs to this current/most recent set of test results, than in all of the previous years added together. So, question is, thyroid related? I think this is a area of inquiry worth pursuing.
I have two hematology/oncology consults pending (appointments 11/16 & 11/24 - as well as an application to a fancy-schmancy Endocrinology practice that only accepts certain "complicated case" patients. Fingers crossed for some answers - for all of us - very soon.
I also have MS, so I'm very eager to separate out which of my new & worsening symptoms that may belong in the hematology/oncology category and/or endocrinology category. I refuse to initiate new/more intensive therapeutic medications for MS when/if the symptoms could be attributable to something other than brain/spine, neurogoical-immunological origin.
Best of luck, everybody; please keep all of us informed!
Take care,
Denise
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Moonspeak - Name: Moonspeak
- When were you/they diagnosed?: 2002
- Age at diagnosis: 38
Re: Thyroid hormones and multiple myeloma
After having my baby I have felt some "swings" in thyroid, a few days of heart palps, and then a few days of tingling hands (I get nueropathy symptoms when my thyroid is low). Seems to be back on track had my tsh tested last month it was 1.0.
Multi. - thanks for the tip about night dosing. I often feel this might work better for me, since I am nursing I wake up super hungry in the mornings but don't want to mess up my meds by eating to soon!
Mroon - I also have hashimotos. The way my doctor described it the thyroid sputters along with periods of action and the nothing until the antibodies destroy the whole gland and it no longer functions.
Multi. - thanks for the tip about night dosing. I often feel this might work better for me, since I am nursing I wake up super hungry in the mornings but don't want to mess up my meds by eating to soon!
Mroon - I also have hashimotos. The way my doctor described it the thyroid sputters along with periods of action and the nothing until the antibodies destroy the whole gland and it no longer functions.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32