Thyroid masking as ALS

daughter01 · 10-31-2009, 11:54 AM

This is my first post. I have been reading a lot of the posts and really appreciate all the opinions and thoughts expressed here. It is such a good feeling to know that this community exists!

My mom has had symptoms since November of 08. She had tests and they said she did not have ALS. They did the needle test, blood tests and some other ones I don't know exactly. The second neurologist said that the first tests may have come in negative because it may have been too early to detect it.

Last week we met with another neurologist who did the test with the needles in the muscles. (forget the name of it). She did my mom's leg, back, neck and her one arm. At this point she stopped and said she believes it to be ALS but wants my mom to get another opinion with the ALS god at the local ALS clinic. She wanted to spare my mom having the other arm poked, because she felt that the ALS doctor would want to look at it himself. We have an apt. set up for November 12th.
My mother has had thyroid problems all her life and takes thyroid medicine. Her husband is feeling like it is the thyroid problem and not ALS. We are meeting with the endocrinologist this next week. I know some of the symptoms are similar, but does the needle test only confirm ALS or could it also indicate thyroid problems? I hope I am clear here in what i am asking.

My Mothers symptoms include:
trouble swallowing, muscle weakness in the upper body, stiffness, throbbing muscle in the upper arm, hoarse voice, some forgetfulness, difficulty making simple decisions, unsteady walking and gait, thinning hair, dry skin, thick mucus in the back of her throat,
weight loss...I know there are more but these are the ones that stick out in my mind right now.

I just have so many questions, but I'll start here. Thank you all!

Zaphoon · 10-31-2009, 11:58 AM

I can tell you that thyroid problems can look a lot like ALS from the outside but when you have had an EMG (needle test) done and the doc says it looks like ALS, that's a different story!

My wife got off of her thyroid meds (a doctor killed her thyroid with radioactive iodine!) and her speech became slurred, she was lathargic and her thought processes slowed. It was scarey! She is now back on her meds and all is well.

However, some of the problems your mom has can be attributed to thyroid (thickening skin, losing hair, losing weight, speech problems). EMG results differ from ALS and thyroid problems, I do believe. Someone spank me if I'm wrong!

Zaphoon

joelc · 10-31-2009, 12:28 PM

Thyroid problems do not show in the needle test, if something shows up there it something other than thyroid. It could point to ALS so it is good your mom has an appointment with an ALS doc.

daughter01 · 10-31-2009, 01:31 PM

Thanks for the information. Kind of what I was thinking....Hope springs eternal!

BethU · 10-31-2009, 01:49 PM

daughter ... I've had thyroid problems for decades, too, and some of those symptoms sound like overactive thyroid (weight loss) and some sound like underactive (voice, forgetfulness, etc.). So far as I know ... but I'm no doctor ... thyroid problems are determined by blood tests. As Zaphoon and Joel said, the EMG (the needles in the muscles) would not detect thyroid problems.

But keep a positive attitude. EVERYTHING else must be ruled out before ALS is dx.

joelc · 10-31-2009, 05:07 PM

Fearfully I post this link. I am not trying to sell anything to anyone. I post it because I have a few articles about thyroid problems that might be helpful. It is with that intent I respectfully post it.
Articles on Thyroid

tdamess · 10-31-2009, 09:46 PM

joelc -i have been looking for something like this for a long time thanks... i am having problems with all thyroid meds all cause breathing problems for me

daughter1... have them check your mom's para-thyroid also ... as that can cause muscle wasting

Alexandre · 11-01-2009, 04:25 AM

Hi Daughter01

What were your mother's first symptoms back in Nov 08? What made her go to the doc?

Alex

daughter01 · 11-01-2009, 06:04 PM

This is the latest news from my Dad. Is it normal to be so tired with ALS?

BUT, please understand that she WILL be exhausted by mid afternoon and will not be able to make the trip up for dinner.
True, it's just a guess on my part, but a very calculated guess based on what I've observed over just the past 3-4 days!
We're hopeing for something radical from the Thyroid doctor on Thursday. She IS getting worse. And that's from your mom
as well as from me. She no longer walks around the house from the chair to the bathroom and back. etc. It's now (as of yesterday and today)
100% wheelchair - from point A to point B - inside the house.

And regarding your comment "I won't tire her out", please trust me, YOU won't but your visit - just your presence, will. She get emotionally
charged by someones visit - and it leaves her very tired. She really tries extreamly hard to be up for the visits from her daughters.
This morning she was up by 6:30am (due the the time change), had her first-thing-in-the-morning meds and took a nap. She woke up from breakfast (had eggs) and went back down for a nap. She got up at 9:45am thinking that it was late afternoon. I corrected her thinking, took her
to the bathroom, and went back down for a nap. She's still in her PJ's - but resting well.

I will try to find out what her early symptoms were.

BethU · 11-01-2009, 10:15 PM

Right now, the exhaustion (weakness?) is the hardest thing about it.

Zaphoon · 11-02-2009, 01:14 PM

That surely is awfully exteme exhaustion! It seems to me like this would be enough for a visit to the ER.

Your mom's case surely isn't a time for pattycaking with a diagnosis! She needs the doctors to get to the bottom of things (in my opinion - be it not so humble).

mare · 11-02-2009, 01:43 PM

It could be possible that the symptoms are a result of both conditions.
I don't know, but possibly the ALS is adding stress to the thyroid problem throwing her out of balance.

Good that she is seeing the endocrine doc; let him get started sorting it out.
She might have more info then when she sees the ALS specialist.

Until then, try (as best you can) not to jump to conclusions!

daughter01 · 11-02-2009, 02:03 PM

Thank you. I am thinking that both of the conditions is making her symptoms worse. We are thinking the extreme exhastion may be from the thyroid and the muscle weakness (and diagnosis from the neurologist) from the als-- if all the second opinions confirm the diagnosis. We are trying to be realistic and just deal with what her needs are until we know for sure.

tdamess · 11-02-2009, 04:11 PM

most doctors go by the blood lab scale , the scale goes up to 5.5 (most of them ) if you are 5.1 they will say it is fine and in range but, most people do better when it is as close to 1 as you can get a little under is best for me.. anything over 3 i feel awful even to pain and breathing is worse so, see if her tsh range is between 1-2 ... if it is lower than .45 she is hyper but i seem to doubt that both ways have similer symptons except hyper people lose weight and thier heart races .... hypo you gain weight and at least with me my heart flutters...both will have you feeling tired... hope this helps.

daughter01 · 11-03-2009, 07:15 AM

Thanks for the info. about the thyroid. I am trying to do additional research so I have an idea of what the Dr. is talking about on Thursday. Dealing with the ALS initial diagnosis, her arthritis and the thyroid does seem to "muddy the waters".