cold hands, shaky right hand and tingling pain

abdulrauf_hafeez

Hello folks, I am a 15 year survivor of Stage 2 nasopharyngeal cancer diagnosed at age 40. I had concurrent cisplatin chemo along with 30 radiation course back in 2009. Still in remission thankfully. One issue, however, that's bothering me the most and getting worse year over year is cold intolerance, especially in the hands, more so in the right hand along with tingling pain and numbness as well as shakiness in the right hand so much so that I dread holding a pen. I take Levothyroxine for hypothyroidism. Levels checked regularly. Tried Liothyronine+Levothyroxine as well. Even tried to stay a bit on the hyper side for a couple of months without improvement in symptoms. Question is that has anyone experienced similar symptoms. Is this peripheral neuropathy? Any success treating or controlling symptoms? Thank you for any tips!

wbcgaruss

Hello, abdulrauf, I am sorry you are having these issues.

You are doing well at being a survivor at 14 years.

Some of the things you describe could be latent effects from your cancer treatment but they could also be from something else.

If the place you got your cancer treatment is available I would say go back there and have them check the records of your treatment and ask the doctor his opinion on it as far as being related to your previous cancer treatment.

Also, I would recommend you see your regular family doctor and get their opinion on it. Maybe get a full check-up if you haven't had one recently. When you were taking Levothyroxine were you being monitored to be sure you were on the correct dose? Also, Liothyronine has side effects that are questionable. Let them know about all your symptoms, especially the issues with your right hand and the difficulty holding a pen and being able to write.

https://www.drugs.com/mtm/liothyronine.html

I don't have any of the exact effects you are getting and all our cases are different so I can't personally give you any solutions.

I hope you find some answers.

Take Care, God Bless

NEGU (Never Ever Give Up)

Russ

abdulrauf_hafeez

https://csn.cancer.org/discussion/comment/1718056#Comment_1718056

thank you so much Russ for your response and kind words. I have been to my PCP several times on this issue. Also saw an endocrinologist friend. Neither have been able to diagnose the problem. I don’t have diabetes and the hypothyroidism is being controlled properly by the medication according to them. The hospital where I had the treatment told me a while back that I don’t need to follow up with them. I guess I should make an appointment with a neurologist. I posted here to see if anybody else had a similar problem. Thanks

abdulrauf_hafeez

tbret

I was surprised by the number of times I had CBC with differentials before someone said, "Hey… let's check your Ferritin." I was low. Eventually we discovered H Pylori, killed it, ended-up with iron injections, and then the cold hands and cold intolerance got better. The improvement is waning. We can't find any blood anywhere it isn't supposed to be, so I might end-up with an upper GI scope to see if there's something to see there.

Anyway, I was just really surprised that as often as I was going to doctors they all "assumed" it was the cisplatin treatments doing a number on my marrow. When they actually looked, I was pretty anemic. You might want to mention it.

I'm related to a neurologist. They thought it was nerve damage from the cisplatin, also.

BTW - I am now five days more than 8 years from my diagnosis and five months away from when they called NED.

Some of this may just be that we're getting older. Isn't that marvelous?

wbcgaruss

tbret, Thanks for your response and the information you provided. Do you have medical experience, are you a nurse or medical technician of some sort? You are very knowledgeable.

I have learned something new.

I was aware the normal blood testing we get tests for iron level but I can't say I ever heard of a Ferritin test nor did I know about Ferritin and what it did but I know now. Below is a link about Ferritin, isn't it amazing? A protein as an iron reserve. Our bodies are not an accident, they are fearfully and wonderfully made, perfectly created down to the last cell and protein.

Ferritin Blood Test: High vs. Low Levels

https://www.webmd.com/a-to-z-guides/ferritin-blood-test

Also, I never heard of H Pylori and the effects that it would have. Interesting.

https://www.webmd.com/digestive-disorders/h-pylori-helicobacter-pylori

So you say you got iron injections which were an improvement but it is now waning and you say "We can't find any blood anywhere it isn't supposed to be,"
Could you explain not finding blood anywhere? Thanks

You are correct, and as we get older we need to keep an open mind about our health and not relate health issues to cancer treatments. It could be something else as in your case.

Even during treatments we need to be aware we can still get all the normal things like colds, flu, blood issues not related to treatment and any other health issues that pop up may not be related to treatment, we are still vulnerable to all the other health problems possible. During treatment, I was having a conversation with one of my nurses and was really in the thick of it and feeling pretty bad from the treatments and I must have been commenting on something related to other illnesses and thinking I would not get them or did not want to and she told me to just be aware that I was not exempt because I was in cancer treatment and I was still open to everything possible as far as getting other illnesses. I think somehow when we are in cancer treatment and are feeling so bad and are not out and about much that we start to think that won't get the normal everyday colds and flu, etc. that the rest of the world gets and it can get us in trouble. I was very lucky during treatment and never got anything else on top of it. I know we have to be very cautious about something like the flu when our blood counts are down due to chemo treatments.

I am glad that you are well out of treatment and nearing the NED mark, Praise God!

You say: "Some of this may just be that we're getting older. Isn't that marvelous?"

It sure is, we are truly Blessed to still be around and getting older, so enjoy your blessings, and count them one by one.

Wishing You The Very Best

(NEGU) Never Ever Give Up

Take Care, God Bless,

Russ

tbret

Russ and all,

I'm no healthcare professional of any sort. I have a lot of friends who are. I have relatives who are. I helped some few study for their tests during med school.

But that does NOT make me their equal. They have forgotten more than I will ever know. The amount doctors learn is staggering. The amount they retain is impressive. The fact that they are not perfect is not in question. The fact that they, too, are flawed mortals is just the way it is. I've even known a couple of really questionable folks who became surgeons !

But what I am NOT is a passive participant in my health care. If a doctor can't explain, in a couple of sentences, what they are doing and why, then my take is that they don't completely understand it themselves. IF they take my questions as a challenge, that tells me they are afraid to explain or can't. "Thanks for your time, Doctor. Where's the door?"

I had several misdiagnoses as a child… by people who should have known better. Made me skeptical.

Maybe what you pick-up from me is just stubbornness and a whole "Oh really!?!" attitude, Russ. Doctors don't impress me, but I absolutely respect them. There's a difference. I've picked a couple up off the floor after a particularly successful party. They are just people.

Okay - the blood we can't find:

I have had a bunch, like… a bunch… of tests to find occult blood in stool samples. <medicine leaves you with little dignity> They were all negative. My Internist was SURE we were going to find I had a GI bleed we could find. I think he may have gotten over-invested in being right about them.

I didn't have one we can find evidence of via occult blood tests / urine tests / etc.

There is no blood we can find. I'm not leaking anywhere we are going to find.

My latest tests show that I still have low Ferritin and RBC counts. But they are "acceptable" by being either just in, or just fractionally below, normal ranges.

All sorts of stuff happens as a result of anemia. All sorts of stuff happens when you have low B12, too. And low B12 might be because you aren't absorbing stuff correctly because of the H pylori. Which causes anemia and other things.

In fact, it's pretty amazing that the human body ever works right !

There are so many things to go wrong. But since I did have the H pylori, it is possible I had a tissue leak before it got into my gut and, with a history of GERD and a hiatal hernia, that I had a leaky ulcer.

It is STILL possible that I have something wrong with the esophagus or the top of the stomach.

We could do an upper GI scope and look, but … There is no such thing as a riskless procedure. I've also asked my doctor, "So, let's say we look and find a ulcerative place in my esophagus… what would we do about it?" He answered that we'd "watch it."

Wonderful. Useless, but wonderful. No thanks.

I gained weight for no explicable reason. I have very high "Thyroid Stimulating Hormone" as though my thyroid gland is being called on to make more, More, MORE, but my "free Thyroid," is on the low side of "normal." That would "seem" to indicate that I am at risk for hypothyroidism, but so far I am okay.

Oh, I should also tell you that there is a local "for profit" lab and a few times I went and paid cash out-of-pocket for tests I wanted done.

There is nobody more interested in the results of these tests than I am. It would be a mistake to think there were.

Russ, I hit the NED-go-away mark three years ago next month and was happy to "go away." I am soooo happy not to have to go for more treatments and do that whole thing again. I didn't eat solid food for six months (no PEG, I was instructed to swallow my Ensure and Glucerna whether I liked it or not - that wasn't any fun, but it did pay-off).

Anyhow, all… I don't mean to sound flippant or arrogant. I found that I have to advocate for myself and be the squeaky wheel when necessary.

Just today I found-out that the new appointments I was called about were, in fact, last year's appointments and that I don't have any upcoming appointments.

And my NavDx test? Nobody has a clue, but someone will get back to me. Eventually. Maybe.

This does not upset me. I get it. They have hundreds of unreasonable, demanding people calling them every day. Unfortunately, it does mean that I have to be sure that the i's are dotted and t's are crossed.

Be well, all.

abdulrauf_hafeez

https://csn.cancer.org/discussion/comment/1718106#Comment_1718106

Thanks so much for your feedback. My PCP finally advised testing for iron deficiency today. I will find out soon.

wbcgaruss

Very well, tbret, I think I understand now after reading your wonderfully detailed report/explanation.

It is good to be a little skeptical about things, and question everything.

Nobody wants to go through a bunch of useless tests and procedures.

Take Care, God Bless

Russ