Does anyone know why headaches seem to be associated with multiple myeloma and any of the precursor stages?
Also, anyone with SMM or multiple myeloma have issues with dramatically fluctuating TSH levels? I have been hypothyroid for years. Over the past 18 months, my TSH levels have fluctuated rapidly between 6.53 and 0.113. Most of the time they are either above or below normal. I'm gaining weight, so I don't think I've suddently switched to being hyperthyroid. Any connection to the plasma cell disorders that anyone knows of? Is it possible to get amyloid deposits in the thyroid?
Forums
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MissMolly - Who do you know with myeloma?: Self; Grandfather died from multiple myeloma
- When were you/they diagnosed?: April 2011 MGUS; July 2012 SMM
- Age at diagnosis: 49
Re: Headaches & thyroid problems -- any connection to multip
I was diagnosed in 2000 with multiple myeloma and amyloid kidney, and had my first successful autologous stem cell transplant that year. In 2004, my blood tests for thyroid and cholesterol were way off, reading as if I had not been taking my medication. Further tests showed it was the amyloidosis causing it, and the treatment for that was also stem cell transplant. Since that transplant in 2004, my numbers have been stable once again and remission from myeloma continues.
In my case, the abnormal thyroid test results did indicate active amyloid and as far as I know, it is just in my kidneys. I do know amyloid deposits can be present in other organs, but not sure about the thyroid gland.
My doctors are vigilant in checking my thyroid and cholesterol levels for any further unusual fluctuations.....so far so good.
I was never bothered with headaches, so I was lucky there.
I hope you can get to the bottom of what is causing your thyroid tests to vary.....something is going on !
In my case, the abnormal thyroid test results did indicate active amyloid and as far as I know, it is just in my kidneys. I do know amyloid deposits can be present in other organs, but not sure about the thyroid gland.
My doctors are vigilant in checking my thyroid and cholesterol levels for any further unusual fluctuations.....so far so good.
I was never bothered with headaches, so I was lucky there.
I hope you can get to the bottom of what is causing your thyroid tests to vary.....something is going on !
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janner - Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2000
- Age at diagnosis: 47
Re: Headaches & thyroid problems -- any connection to multip
I have had a Thyroid issue for the last few of yrs. They told me it was most likely due to the Thalidomide & Dex I had been on a few years earlier. The doctors changed my meds & I have been on 5 different doses! I recommend seeing an Endroconologist. I have now been with mine for over a yr and she has had to change my doses twice. Just another medical issue besides having M Myeloma!! I do not like the weight gain I am experiencing now... but otherwise does not seem to bother me. Hope this helps.
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hoss4twa
Re: Headaches & thyroid problems -- any connection to multip
I am recently diagnosed SMM and have been hypothryoid for many, many years and have been on synthroid that whole time. I've had my TSH checked twice since my diagnosis and it has been steady for me and I haven't had to tweak my synthroid dose whatsoever (which, as you probably know, takes a bit of fine tuning to get right).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Headaches & thyroid problems -- any connection to multip
Hi - my endocrinologist was the dr who found my m spike and later told me that several of her patients have MGUS. She said auto immune diseases and MGUS are common. I had hypothyroidism for about 15 years before developing MGUS. Since diagnosed with MGUS, she has lowered my synthyroid in response to a lower TSH. I was on 1.13 and now take .88 and haven't noticed a difference.
Following a BMA and told I have MGUS, I had another opinion w a second dr. He said my type of MGUS (Igg chromosome 7) is associated with amyloid problems and to watch the kidneys. Does anyone have a trisomic 7 mutation? If so, when do the amyloid problems start? So far, no CRAB issues.
Following a BMA and told I have MGUS, I had another opinion w a second dr. He said my type of MGUS (Igg chromosome 7) is associated with amyloid problems and to watch the kidneys. Does anyone have a trisomic 7 mutation? If so, when do the amyloid problems start? So far, no CRAB issues.
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Dianem
Re: Headaches & thyroid problems -- any connection to multip
Thanks everyone for the responses. I've been hypothyroid long before MGUS/SMM, but this is the first time the numbers have gone so far in the other direction and bounced back and forth wildly. Gaining weight weekly, despite being on diet. Thyroid ultrasound is pending, so hopefully will have more answers soon. Changes correlate in time to progression to SMM.
Have also had headaches most of my life, so almost certainly unrelated to current SMM, but notice that many on this site complain of headaches and just wondered if anyone knows why that seems to be a common symptom.
Have also had headaches most of my life, so almost certainly unrelated to current SMM, but notice that many on this site complain of headaches and just wondered if anyone knows why that seems to be a common symptom.
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MissMolly - Who do you know with myeloma?: Self; Grandfather died from multiple myeloma
- When were you/they diagnosed?: April 2011 MGUS; July 2012 SMM
- Age at diagnosis: 49
Re: Headaches & thyroid problems -- any connection to multip
I have suffered from terrible headaches most of my life but in the past 3 months they have gotten significantly worse and I was just diagnose with multiple myeloma 7 days ago. They are thinking now that I am in the smoldering stage. The have gotten so bad recently that my blood pressure went up to 189/110 from pain. I think that already being prone to headaches, the stress and pain of this disease may trigger them more. Also I read that high protein levels can cause thicker blood which causes headaches and circulation problems.
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dishevelled - Name: Heather Trimnell
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 4/1/2011
- Age at diagnosis: 36
Re: Headaches & thyroid problems -- any connection to multip
Headaches were a symptom for me, but I did not know it at the time!
I went from one or two migraines a year, to weekly migraines, which would last sometimes for several days. Also started with more frequent dizzyness and nausea with the headache, which was new. I had a host of other symptoms though.. not just the headaches.
I had what Disheveled is talking about. Hyperviscocity- aka thick blood- as a result of a high M- Protein in my blood, making it too thick to go to all the little nerves and blood vessels. My M spike was 98 g/l when I was diagnosed (or 9.8 g/dl per U.S. measurements)
My multiple myeloma dr. said this occurs in less then 5% of multiple myeloma. Headaches were just one of the symptoms, neuropathy in hands was bad, vision problems was another issue. Nose bleeds were also a sign.
Once my protein came down I'm back to a migraine every couple months or so!
My protein was high because I had multiple myeloma for a few years, but could not get an accurate diagnosis, so it just kept rising.
I went from one or two migraines a year, to weekly migraines, which would last sometimes for several days. Also started with more frequent dizzyness and nausea with the headache, which was new. I had a host of other symptoms though.. not just the headaches.
I had what Disheveled is talking about. Hyperviscocity- aka thick blood- as a result of a high M- Protein in my blood, making it too thick to go to all the little nerves and blood vessels. My M spike was 98 g/l when I was diagnosed (or 9.8 g/dl per U.S. measurements)
My multiple myeloma dr. said this occurs in less then 5% of multiple myeloma. Headaches were just one of the symptoms, neuropathy in hands was bad, vision problems was another issue. Nose bleeds were also a sign.
Once my protein came down I'm back to a migraine every couple months or so!
My protein was high because I had multiple myeloma for a few years, but could not get an accurate diagnosis, so it just kept rising.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Headaches & thyroid problems -- any connection to multip
Yes!!! I also have had headaches, both migraine and otherwise most of my adult life. But in the last few years in which I've had multiple myeloma (dx 2008), I've had more HA and more migraine. I've even had an icky migraine side effect called phantom scent (that's smelling what's not there) Ug!
I never even thought this might be a side effect of multiple myeloma!
I never even thought this might be a side effect of multiple myeloma!
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Jubyanne - Name: Julia Munson
- Who do you know with myeloma?: myself, son's mother-in-law
- When were you/they diagnosed?: Spring 2008
- Age at diagnosis: 65
Re: Headaches & thyroid problems -- any connection to multip
Today my headache is so bad and nothing helps. Wake up with it, now going to bed with it:(
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dishevelled - Name: Heather Trimnell
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 4/1/2011
- Age at diagnosis: 36
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