Thank you Myeloma Beacon. I appreciate the clarification. Fortunately, there is a wealth of myeloma-related, substantiated research available to study and review, so I may stick to that for now. The Mayo studies come to mind, in particular, as it's amazing there really was that kind of "real people, real lives" data available.
As always, very interesting and thought provoking stuff on the Beacon!
Forums
-
Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Thyroid hormones and multiple myeloma
Thank you Beacon for the considered response. I shall catch up on all the earlier information I've missed as I, like Labellavita, am just trying to get to the basic level of this.
Thank you Labellavita for the information on detoxification. I have a MTHFR mutation and will definitely do further reading on this topic.
Thank you Labellavita for the information on detoxification. I have a MTHFR mutation and will definitely do further reading on this topic.
-
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
Hi Spanish Mary - I read another version of the article you posted related to thyroid hormones and cancers about a year ago. In my late 30s I was diagnosed with low thyroid and started taking Synthyroid. About 3 years ago (at age 56), I was diagnosed with IgG MGUS.
After reading the article, I asked to have my Synthroid dose lowered (highest was 112 mcg Snythyroid) and now take the 88 mcg dose. My first M spike (fall 2011) was 1 g/dL (10 g/L), but retested spike was 1.5 g/dL. Just had the annual blood tests and my M spike is 0.8 g/dL and my thyroid hormones all in normal range.
I have no idea if there is a correlation between lowering the dose and having a lower spike. I did not notice any changes going from a higher dose to lower dose. Now, my doctor is considering the 75 mcg dose after a thyroid ultrasound to assess the nodules.
Diane
After reading the article, I asked to have my Synthroid dose lowered (highest was 112 mcg Snythyroid) and now take the 88 mcg dose. My first M spike (fall 2011) was 1 g/dL (10 g/L), but retested spike was 1.5 g/dL. Just had the annual blood tests and my M spike is 0.8 g/dL and my thyroid hormones all in normal range.
I have no idea if there is a correlation between lowering the dose and having a lower spike. I did not notice any changes going from a higher dose to lower dose. Now, my doctor is considering the 75 mcg dose after a thyroid ultrasound to assess the nodules.
Diane
-
Dianem
Re: Thyroid hormones and multiple myeloma
Hi Diane,
Thank you for your response. I also have IgG MGUS (lambda), and my M-spike is 1.2 g/dL (12 g/L). I have had a decrease in my uninvolved light chains over the last 3 months that decreased my light chain ratio from 0.24 to 0.20. I am now doing light chains on a monthly basis to establish if there is a trend or whether it is just analytical variability. Lambda light chains are 56.
Your M-spike decreased significantly, and it will be interesting to see if mine also goes down. However, I have gone off curcumin (and other nutraceuticals) upon my hematologist's request, so that may also affect my results.
I shall speak to my doctor about desiccated thyroid when I see her in November. Thank you for the info, and good luck if you decide to go with the lower dose.
Bedtime in my time zone now!
Thank you for your response. I also have IgG MGUS (lambda), and my M-spike is 1.2 g/dL (12 g/L). I have had a decrease in my uninvolved light chains over the last 3 months that decreased my light chain ratio from 0.24 to 0.20. I am now doing light chains on a monthly basis to establish if there is a trend or whether it is just analytical variability. Lambda light chains are 56.
Your M-spike decreased significantly, and it will be interesting to see if mine also goes down. However, I have gone off curcumin (and other nutraceuticals) upon my hematologist's request, so that may also affect my results.
I shall speak to my doctor about desiccated thyroid when I see her in November. Thank you for the info, and good luck if you decide to go with the lower dose.
Bedtime in my time zone now!
-
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
I agree with the Toni's post that hypothyroid dosing is very finicky. I also agree that you will likely see a change in your TSH levels just going from generic levothyroxine to Synthroid and vice-versa, let alone with a change of dose. It literally took me months to get to the correct levothyroxine level to get my thyroid hormone levels right (I also learned during that process why these drugs come in 12.5 microgram dose increments).
I would be cautious about changing any dose to potentially counter multiple myeloma. Hypothyroidism itself has a lot of negative consequences and I can't see my GP signing up for a dose change or eliminating levothyroxine ... nor would I likely consider this move without a lot more data to support such a decision.
If I did make such a change, I would only make the change if I had some sort of a gradual transition plan to a proven homeopathic approach that my GP (who is open minded about such things) would back. But if you read up on the suggested homeopathic approaches for treating hypothyroidism, you will find that they often recommend that you avoid the same foods that are recommended for cancer prevention (brussel sprouts, broccoli, kale, spinach, etc). What's a person to do?
Lastly, while there very well may be some good reasons for exploring dessicated thyroid versus synthetic thyroid for treating hypothyroidism, I don't think anybody can say that one versus the other can be recommended in the context of these pre-clinical studies. Or is there some advantage to dessicated thyroid that I am missing in this context?
I would be cautious about changing any dose to potentially counter multiple myeloma. Hypothyroidism itself has a lot of negative consequences and I can't see my GP signing up for a dose change or eliminating levothyroxine ... nor would I likely consider this move without a lot more data to support such a decision.
If I did make such a change, I would only make the change if I had some sort of a gradual transition plan to a proven homeopathic approach that my GP (who is open minded about such things) would back. But if you read up on the suggested homeopathic approaches for treating hypothyroidism, you will find that they often recommend that you avoid the same foods that are recommended for cancer prevention (brussel sprouts, broccoli, kale, spinach, etc). What's a person to do?
Lastly, while there very well may be some good reasons for exploring dessicated thyroid versus synthetic thyroid for treating hypothyroidism, I don't think anybody can say that one versus the other can be recommended in the context of these pre-clinical studies. Or is there some advantage to dessicated thyroid that I am missing in this context?
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Thyroid hormones and multiple myeloma
If I remember correctly, synthetic thyroid hormone is just T4, with the assumption that your body will convert some of that to the needed T3. Unfortunately not everyone converts it well. That is why more people are turning to desiccated which, being natural thyroid, has T4 and T3, so the body doesn't have to convert it. Some doctors are now supplementing their patients on synthetics with a T3 pill (Cytomel [liothyronine]) to help bridge that gap, but change can be slow.
-
labellavita
Re: Thyroid hormones and multiple myeloma
Spanish Mary, I recently found out that I too have a MTHFR mutation and am learning about what all that means now. And side note here: this is very important to remission. I don't understand all of this yet, but I'm plugging away at it.
CJ Heuck et al, "Myeloma Is Characterized by Stage-Specific Alterations in DNA Methylation That Occur Early during Myelomagenesis," Journal of Immunology, March 15, 2013, 90(6):2966-75 (full text online)
Abstract:
Epigenetic changes play important roles in carcinogenesis and influence initial steps in neoplastic transformation by altering genome stability and regulating gene expression. To characterize epigenomic changes during the transformation of normal plasma cells to myeloma, we modified the HpaII tiny fragment enrichment by ligation-mediated PCR assay to work with small numbers of purified primary marrow plasma cells. The nano-HpaII tiny fragment enrichment by ligation-mediated PCR assay was used to analyze the methylome of CD138(+) cells from 56 subjects representing premalignant (monoclonal gammopathy of uncertain significance), early, and advanced stages of myeloma, as well as healthy controls. Plasma cells from premalignant and early stages of myeloma were characterized by striking, widespread hypomethylation. Gene-specific hypermethylation was seen to occur in the advanced stages, and cell lines representative of relapsed cases were found to be sensitive to decitabine. Aberrant demethylation in monoclonal gammopathy of uncertain significance occurred primarily in CpG islands, whereas differentially methylated loci in cases of myeloma occurred predominantly outside of CpG islands and affected distinct sets of gene pathways, demonstrating qualitative epigenetic differences between premalignant and malignant stages. Examination of the methylation machinery revealed that the methyltransferase, DNMT3A, was aberrantly hypermethylated and underexpressed, but not mutated in myeloma. DNMT3A underexpression was also associated with adverse overall survival in a large cohort of patients, providing insights into genesis of hypomethylation in myeloma. These results demonstrate widespread, stage-specific epigenetic changes during myelomagenesis and suggest that early demethylation can be a potential contributor to genome instability seen in myeloma. We also identify DNMT3A expression as a novel prognostic biomarker and suggest that relapsed cases can be therapeutically targeted by hypomethylating agents.
CJ Heuck et al, "Myeloma Is Characterized by Stage-Specific Alterations in DNA Methylation That Occur Early during Myelomagenesis," Journal of Immunology, March 15, 2013, 90(6):2966-75 (full text online)
Abstract:
Epigenetic changes play important roles in carcinogenesis and influence initial steps in neoplastic transformation by altering genome stability and regulating gene expression. To characterize epigenomic changes during the transformation of normal plasma cells to myeloma, we modified the HpaII tiny fragment enrichment by ligation-mediated PCR assay to work with small numbers of purified primary marrow plasma cells. The nano-HpaII tiny fragment enrichment by ligation-mediated PCR assay was used to analyze the methylome of CD138(+) cells from 56 subjects representing premalignant (monoclonal gammopathy of uncertain significance), early, and advanced stages of myeloma, as well as healthy controls. Plasma cells from premalignant and early stages of myeloma were characterized by striking, widespread hypomethylation. Gene-specific hypermethylation was seen to occur in the advanced stages, and cell lines representative of relapsed cases were found to be sensitive to decitabine. Aberrant demethylation in monoclonal gammopathy of uncertain significance occurred primarily in CpG islands, whereas differentially methylated loci in cases of myeloma occurred predominantly outside of CpG islands and affected distinct sets of gene pathways, demonstrating qualitative epigenetic differences between premalignant and malignant stages. Examination of the methylation machinery revealed that the methyltransferase, DNMT3A, was aberrantly hypermethylated and underexpressed, but not mutated in myeloma. DNMT3A underexpression was also associated with adverse overall survival in a large cohort of patients, providing insights into genesis of hypomethylation in myeloma. These results demonstrate widespread, stage-specific epigenetic changes during myelomagenesis and suggest that early demethylation can be a potential contributor to genome instability seen in myeloma. We also identify DNMT3A expression as a novel prognostic biomarker and suggest that relapsed cases can be therapeutically targeted by hypomethylating agents.
-
labellavita
Re: Thyroid hormones and multiple myeloma
Labellavita,
Thanks for the post. For some reason, I thought desiccated thyroid (DTE) would not be covered under my prescription insurance plan, but I find that it is (both brand name and generic).
If anything, it seems like an interesting thing to discuss with my GP at my annual physical next month, if only for potentially optimizing my hypothyroidism treatment. However, while it is easy to find non-clinical and homeopathic articles that extoll the benefits of DTE, the clinical papers that compare it to levothyroxine aren't so compelling (except for the potential weight loss advantages of DTE) :
http://octoberhealth.com/images/Thyroid_Info.pdf
TD Hoang et al, "Desiccated thyroid extract compared with levothyroxine in the treatment of hypothyroidism: a randomized, double-blind, crossover study," Journal of Clinical Endocrinology and Metabolism, 2013 May;98(5):1982-90 (full text online)
Tying this back to the original subject of cancer, remember that both T3 and T4 were potentially implicated in cancer proliferation. So, if you take this statement at face value, I'm not sure that there is any advantage of DTE over levothyroxine, at least in the context of Cohen's paper.
Thanks for the post. For some reason, I thought desiccated thyroid (DTE) would not be covered under my prescription insurance plan, but I find that it is (both brand name and generic).
If anything, it seems like an interesting thing to discuss with my GP at my annual physical next month, if only for potentially optimizing my hypothyroidism treatment. However, while it is easy to find non-clinical and homeopathic articles that extoll the benefits of DTE, the clinical papers that compare it to levothyroxine aren't so compelling (except for the potential weight loss advantages of DTE) :
http://octoberhealth.com/images/Thyroid_Info.pdf
TD Hoang et al, "Desiccated thyroid extract compared with levothyroxine in the treatment of hypothyroidism: a randomized, double-blind, crossover study," Journal of Clinical Endocrinology and Metabolism, 2013 May;98(5):1982-90 (full text online)
Tying this back to the original subject of cancer, remember that both T3 and T4 were potentially implicated in cancer proliferation. So, if you take this statement at face value, I'm not sure that there is any advantage of DTE over levothyroxine, at least in the context of Cohen's paper.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Thyroid hormones and multiple myeloma
T3 and T4 are essential for life. I cannot see how not being optimized in something essential and necessary for every single cell in our body will make one healthy. Hypothyroidism increases ones chance of developing cancer, so it matters very much and is treated way to casually IMHO. There is a whole body here that we are trying to maintain, we are more than multiple myeloma/MGUS. Not being optimized is like an invitation for even more illness, more oxidative stress, DNA damage, etc. No thank you.
Your doctor may or may not prescribe it. Many do not as they have no experience with it.
There are many anecdotal stories that in time are scientifically validated. And, sometimes when something is validated, it takes a while for the new information to take hold and become a new protocol. I wished things moved faster.
Your doctor may or may not prescribe it. Many do not as they have no experience with it.
There are many anecdotal stories that in time are scientifically validated. And, sometimes when something is validated, it takes a while for the new information to take hold and become a new protocol. I wished things moved faster.
-
labellavita
Re: Thyroid hormones and multiple myeloma
Labellavita,
Please be clear that all of my various thyroid levels are exactly where they should be through the use of levothyroxine. I'm not against considering DTE and I already mentioned that I will discuss it with my GP, although he may be hard pressed to suggest a change given my hypothyroidism is already in check.
My GP is extremely open to such discussions and both he and my onc support my homeopathic supplementation efforts and use of fenofibrate to potentially ward off a progression to symptomatic multiple myeloma. I will also bet that my GP has experience with DTE, given his propensity to suggest homeopathic and less-conventional approaches in combo with conventional regimens.
But again, my point is that there is no supporting evidence that has been stated here that would suggest that DTE would be inherently superior to synthetic thyroid hormones in the context of Cohen's paper, especially if one's thyroid levels are already under control.
In any case, I'm all for patients finding the best means possible to get their hypothyroidism under control and I'm not throwing DTE under the bus in any shape or form.
Please be clear that all of my various thyroid levels are exactly where they should be through the use of levothyroxine. I'm not against considering DTE and I already mentioned that I will discuss it with my GP, although he may be hard pressed to suggest a change given my hypothyroidism is already in check.
My GP is extremely open to such discussions and both he and my onc support my homeopathic supplementation efforts and use of fenofibrate to potentially ward off a progression to symptomatic multiple myeloma. I will also bet that my GP has experience with DTE, given his propensity to suggest homeopathic and less-conventional approaches in combo with conventional regimens.
But again, my point is that there is no supporting evidence that has been stated here that would suggest that DTE would be inherently superior to synthetic thyroid hormones in the context of Cohen's paper, especially if one's thyroid levels are already under control.
In any case, I'm all for patients finding the best means possible to get their hypothyroidism under control and I'm not throwing DTE under the bus in any shape or form.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012