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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

Re: Thyroid hormones and multiple myeloma

by barbara1200 on Wed Sep 24, 2014 8:54 pm

Since we are on the subject of thyroid, could someone tell me if my level is high or low?

My thyroid stimulating hormone came in at 0.30 L (out of range.) The range they say on the sheet is 0.40-4.00 IU/ML (whatever that means).

This stuff is so confusing to me. All I know is I was on 88 mcg of the generic thyroid med and now I am on 75 mcg.

Hope someone can explain this to me. Thanks so much.

barbara1200
Name: barb
Who do you know with myeloma?: myself
When were you/they diagnosed?: 2013
Age at diagnosis: 75

Re: Thyroid hormones and multiple myeloma

by lys2012 on Wed Sep 24, 2014 10:38 pm

I am on Eltroxan (levothyroxine) since after my transplant. It is better for me since it has less additives or something. I absorb it better than Synthroid.

I would not consider stopping it on my own. If you really have a thyroid issue, you need the thyroid supplement. Without proper levels of thyroid hormones, your body will not function properly. I had a lot of symptoms from my thyroid issue, but I just thought the were all side effects from chemo, so it took a while to figure it out. Once I started treatment, things are much better (fatigue, neuropathy, stomach issues, etc. etc.)

My doc told me "natural" thyroid is just ground up pig thyroid glands in a pill. Gag. No offence, but give me the synthetic stuff please.

lys2012
Name: Alyssa
When were you/they diagnosed?: 2010, Toronto, Canada
Age at diagnosis: 32

Re: Thyroid hormones and multiple myeloma

by Multibilly on Wed Sep 24, 2014 10:47 pm

Barbara,

Remember, I'm not a doc.

I assume that the generic thyroid med is levothyroxine. IU/ml = International Units/milliliter, which is a standard measure for TSH.

If you are currently being treated for hypothyroidism and your thyroid stimulating hormone (TSH) level is low (it sounds like it is), it may mean that your med dose is a bit too high. If you just switched from 88 mcg to 75 mcg, it may take awhile (several weeks) for your various thyroid levels to reach their new normal. Or your doc may need to tweak the dose down another notch. He may also be looking at your T3 and T4 levels as he sorts all this out.

You really need to follow through with your doc on this since it is important to get these levels right. Endocrinology is an art best done by a doc who knows this stuff ... not by some layman like me on a forum.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Thyroid hormones and multiple myeloma

by Spanish Mary on Thu Sep 25, 2014 2:07 am

Hi Labellavita,

I'm sorry to report that I made a mistake. I read a family member's gene report instead of my own. I do NOT have a MTHFR mutation, but GSTT1 (detoxification) and MnSOD (oxidative stress) mutations. The article on methylation is fascinating though. My integrative doctor prescribes TMG (trimethylglycine) to control methylation. Maybe you want to look into that?

In light of all the opinions posted here regarding the cellular function requirements of thyroid hormones, I decided yesterday to only halve my thyroid medication (which is T3 and T4, since I have problems with conversion) and not cut it out completely. The objective is still to see if it impacts on my M-spike.

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

by Multibilly on Thu Sep 25, 2014 9:51 am

Spanish Mary,

Just curious, but why wouldn't you work with your integrative doc to do your experiment? While he may not approve of your experiment, he could at least be ordering the right tests with the right frequency to monitor your thyroid function.

It's one thing to respectfully disagree with your doc and to do your own thing, but it's another matter to change doses without him/her at least knowing about it upfront. If I were to do the latter, I think my doc would not be as open and respectful of me going forward. But he would understand if I did the former, although he may not be happy with my decision.

Just my two cents....

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Thyroid hormones and multiple myeloma

by barbara1200 on Thu Sep 25, 2014 10:50 am

Multibilly,

Don't sell yourself short. I listened to my doc explain hypothyroidism and hyperthyroidism, and was completely overwhelmed when I came out of the office. I could not understand why he was cutting my dose but, after your explanation, I understand it completely.

I love this board. Everyone is so willing to share their knowledge.

Thanks so much for taking the time to answer, Multibilly.

barbara1200
Name: barb
Who do you know with myeloma?: myself
When were you/they diagnosed?: 2013
Age at diagnosis: 75

Re: Thyroid hormones and multiple myeloma

by Spanish Mary on Fri Sep 26, 2014 5:47 pm

Multibilly,

I did let my integrative doctor know what I am doing and I can only hope she understands why, as I also forwarded the Cohen report to her. I have been a very compliant patient in the four years that I have been seeing her for preventative care, and her care and concern is the reason that my MGUS was diagnosed. Any change in my October blood tests will now not come as a surprise to her, and I'm sure she knows I value her professional input in my health, as it is a real effort to see her - her practice is 600 km (370 miles) away from me.

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

by Dianem on Fri Sep 26, 2014 6:44 pm

Hi Spanish Mary,

I want to stress that, when I lowered my Synthroid, I did it gradually over a year. According to my doctor, my thyroid no longer functions and that was why my dose at one time was 112 mcg. The article was my initial reasoning to go lower, but when assessing my thyroid hormones it appeared there were other factors.

First, my TSH was a low normal and T4-T-5 were high normals - my metabolism changed over the past 20 years.

Secondly, when initially diagnosed in my late 30s, I had the opposite - an abnormal high TSH and low T4-T5 along with osteopenia. My doctor said thyroid disease is a factor for bone loss and so is a low TSH. Despite all the exercise I do, I'm getting closer to osteoporosis. Hoping a more normal THS will stop some of the bone loss, since I can't take biophosphates.

Currently at 88mcg, my thyroid hormones are all in the average range. Do not have any symptoms of thyroid problems and same energy levels. I would encourage doing this slowly - took me a year.

Do you know if your thyroid is functioning? My doctor said the first signs of possible problems when I lowered would be feeling cold and tired.

Take care, Diane

Dianem

Re: Thyroid hormones and multiple myeloma

by Multibilly on Fri Sep 26, 2014 7:41 pm

Dianem,

My doc had casually mentioned to me quite some time back that my thyroid had also stopped functioning and was likely pretty much "dead". When you were at 112 mcg (my same current dose level), were your thyroid levels normal at that time? And then you were able to slowly titrate down to 88 mcg and still maintain normal thyroid levels?

If so, that's pretty cool and definitely something worth exploring.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Thyroid hormones and multiple myeloma

by Toni on Fri Sep 26, 2014 8:54 pm

Dianem -

Like you, I've been on Synthroid for 20 years. The last time I saw an endocrinologist, 7 years ago, she said my thyroid is pretty much gone. So, I'm levothyroxine dependent.

That being said, I noticed on my test results this past winter that my TSH seems to have done the same thing yours has. I thought to consult my physician about this, perhaps next time I see him.

I'll need to look at the numbers again.

As I said before, this is a very good discussion.

Toni
Name: Toni
Who do you know with myeloma?: self - MGUS
When were you/they diagnosed?: April 2014
Age at diagnosis: 51

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