POLL/Neuropathy & Thyroid-Please Join

[msfergy]

Ok I have decided to place a Poll on here myself.
How many of you out there have Neuropathy problems along with Thyroid? If you do give a breif description of the problems and what type of thyroid problem you have. If enough of us out there suffer from this then maybe the Endo's would relate to it, as we can print this out and take it to the Doctor with us. Thanks for participating.

[AR-10]

For those of us too confused, tired, or lazy to look it up, you may want to define neuropathy. I used to know what it is, but I have forgotten. Dificulty thinking straight, memory like a sieve, and all that. ;)

[drick008]

I was diagnosed with Hypothyroid May 2007, when my blood tests result shows TSH = 6.22 (0.5-5.5). Started taking Levothyroxine 25 mcg for six weeks. July 2007, the blood test is all in range but I told my doctor I'm not feeling good...had brain fog and I did start feeling neuropathy (tingling and numbness in hands and feet) since June 2007. She recommended trying Armour and this helped the Brain Fog but neuropathy comes and goes.

Take care,
Rick

[rohit_786]

I must say it is great idea so that way we can sound loud in front of Endos.
I started having Tingling in my feet in 2005 and some dizziness , i went to GP he has done all blood test that seems to be normal although my TSH level was 3.45 but according to my doctor it was normal , i feel fatigue , less concentration to work, muscles weakness , lack of coordination in words compare to before ,numbness and tingling in my arms and feet. I went to neurologist to investigate about neuropathy . They perform nerve conduction test and at the same time perform another series of blood test
the nerve conduction test came back normal but my TSH shows 12.13 in Sept 2005 , at that time too much fatigue,heavy head ,numbness and tingling  and muscles/joint  weakness and ache.
We started with Endo with 100 mcg of Levothyroxine  and than i seem to have improvement but still have Neuropathy and Muscles weakness  , went again to Neurologist thought could be Mysthania Gravis  but it wasn't based on Ab test .
In Jan2007 My doctor started to Cytomel 5mcg x2/day  plus levoxyl 75mcg/day  and also ran b12 test and found my b12 level was 285 so he gave me Hydrocobolium Inject 1000mcg /day x7, 1000mcg x1/7 days and 1000mcg x1/15 days .
That seems to help my neuropathy i felt good first time in 2 years for 10 days and than started having problem again fatigue/muscles weakness and lack of concentration.Did TSH test in March 07 and found m level was 0.004 seems like turn out to Hyper . Since than playing ping game with my tsh.
Current symptoms: Burning feet/fatigue/lack of concentration/numbness in hand fall sleep in night /heavy head. Current TSH level on July 19,07 5.35. FT4 1.0

[rayneweather]

I don't have a confirmed case of neuropathy but I have noticed that since my TT (spent quite a bit time hypo after it) that my hands & feet fall asleep faster and I have to be more careful about how much I'm leaning on my elbows or knees.  It's pretty much dependent upon my position but it has made falling asleep more difficult as I normally sleep with my arm bent under my pillow and it usually makes my hand fall asleep pretty quickly.

Rayne

[Newbee2000]

I've posted on ths forum before about thyroid and neuropathy (also called paresthesias), tingling and numbess. One of the first hypo thryoid symptoms I deveoped was tingling feet. That was in early 2007 when I began to develop lots of symptoms. I also began to experience numbness in my hands and my hands would actually fall alseep while I was asleep (carpal tunnel). By April I had tingling in my body as well (especially across my back). In April I was diagnosed w/ hypo/hashi and started synthroid. When my tsh dropped to 5.3 the tingling in my body stopped, but I still have it in my feet and my hands still feel slightly numb throughout the day.  I've takes numerous medical tests (scans, x-rays, blood labs, etc. by Neuro MD, orthopedist, and primary care MD) and nothing else can be found!!! I also have some minor short term memory problems (like I forget to put things back in the fridge or I come home from shopping if I put down the bag, I might forget about it until I see it later). I always had an excellent memory, that is until the hypo/hashi invaded my life. I'm female, 40. -- Would also like to hear expereinces of others w/ thyroid and neuropathy/paresthesias. - Good luck to all!!

[msfergy]

I am glad you found this since you sound so much like me, I hope this is a good turn out with everybodys opinion here so we can take this to the Doctor with us and let them see how many others actually have this problem. Then maybe they wont think we are nut's :) Have a wonderful day and Thanks to all that have joined so far. God be with all of us..............

[tsimmu]

Okay ... I'm at my wit's end. I apologize for the long post but thought I should give everyone the complete story. Been to my GP, endo, neuro-ophthalmologist and neurologist and still no answers. I was recently diagnosed with Graves Disease (due to proptosis in my left eye). I've been hyper for over two years. I'm dealing with the eye issue but my recent blood work shows that I'm euthyroid..

Here's my story:

5 weeks ago ... got off tapazole (for my hyperactive thyroid) after being on low dose for two years. At this time I also started taking mucomyst eye drops in both eyes (4-6 times a day) and Restasis eye drops twice a day.

3 weeks ago ... joint and muscle pain, numbness and tingling started ... moved all over my body but starts between my shoulder blades in my back and travels throughout. Started getting mild fasciculations (twitches) all over my body but only during periods of rest.

Two weeks ago... discovered mucomyst is a sulfa drug (I'm allergic). Stopped the mucomyst. Two days later ended up in ER with horrible case of hives and difficulty swallowing. Gave me prednisone and sent me home. Had MRI of brain and eye orbits ... nothing significant found but some mild swelling of my sinuses.

This week ... Muscle fasciculations are constant (only present during rest) muscle/joint pain and numbenss has subsided some but flares and is intense for short periods in my legs mostly. Also having hard time swallowing (lump in my throat feeling) and my voice is hoarse/weak with an occasional sore throat. Also experiencing facial tingling and numbness that comes and goes.

My endo swears nothing is wrong with my thyroid because blood work would show it. Since MS has been ruled out ...  this sounds a lot like ALS? No history of ALS in my family. I'm a female, 41 years old.  Or maybe peripheral neuropathy?

Or yet another option  ... aseptic meningitis from the sulfa antibiotic I was taking for over three weeks. Last time I took a sulfa drug was for my ulcerative colitis seven years ago. That resulted in severe joint pain and muscle weakness ... all that subsided once I stopped taking the drug.

All this stress has resulted in complete loss of appetite. My neurologist suspects aseptic meningitis and wants to wait and see if the fasciculations, numbness, and intermittent myalgia subside. We did a lyme disease test at my insistence but my neuro seemed over confident that it's not lyme (test results are pending).

Can any/all these symptoms be attribuatble to my Graves Disease?? My gut says this is all thyroid related -- but because I'm euthyroid (all blood work normal), I can't find an endo willing to consider it.

I've never been hypo before ... are my symptoms consistent with hypo? My neurologist said the fasciciulations might also be thyroid related.

Any thoughts/ideas would be appreciated. Thanks!

Tsimmu


To:

[DLA]

Has your endo ran antibody tests for Graves?  If they haven't would have this checked out for sure just to rule out thyroid for sure.  After that I don't really know.

The ALS---know my grandfather had the neuropathy but it was not all over at first it was just one hand and gradually moved to consume his entire body.  If it is ALS you should have visibly noticeable wasting of muscle.

Am praying that you find answers soon.
Dac

[DLA]

I had neuropathies with both Graves (hyper) and hypo.  Mainly in my hands, feet, and a lot in my face.  Don't remember the dates, but do remember this very well.

Dac

[msfergy]

Hello and sorry to hear all your problems but that is why I am doing this, I have all them problems to and my Endo. says it isn't my thyroid, I have had numerous test and MRI'S since December when this started, hang in there and any new news you get lets us all know.
I am going to print this all out and send it to my Endo to show him I am not the only one, and I am taking a copy to the internal med doc, she seems to relate to it somewhat and acts like she can help, well byt taking out the thyroid but I don't think that is the answer to taking away these symptoms. Keep watching this post and you can hear about all of us. I get like water running down my leg also and feel drops of water here and there to.

[msfergy]

Also what is ALS? One of my trips to the ER that Doc just told me it looks like I have the million dollar disease, what help he was! But I think he was right, I was having seizer like tremors at that time in the very beginning.

[DLA]

ALS--Lou Gehrig's Disease

[DLA]

Just read what you said about the drops of water running down your leg.  Thought this was just me.  I still get this sensation all the time.  Also feels like I am drooling a lot.  Am not, but sure does feel that way.

Dac

[artsyrose]

I am really surprised that there are so many of us that have these problems...I guess I thought I had the numbness and tingling because of the pernicious anemia problem...I also have Hashimotos.. In addition to the tingling I have trouble with shooting pains in one shoulder and my neck...my hands go to sleep very easily...especially when I read in bed at night, I guess because I am holding a book at a somewhat constant level...drives me nuts. of course it seems like every joint I have aches sometime or another...unfortuately sometimes altogether...and talk about memory problems...I lose words in mid-sentence...I have 2 masters degrees and can't find the proper word? it is crazy! and I am constantly tired...makes me feel like I am a hundred years old sometimes!!! sheeesh.... I give myself vitamin B12 injections as prescribed by my endo...helps some...but only for the tingling...and I have a little more energy for awhile

[SuzieQTT]

I had numbness and tingling in my hands, arms, face and lips.  My feet and legs would also have problems as well.  I was stiff gaited and walked like I was alot older.  The only problem we had with the diagnosis is that my doctor (former Endo) wouldn't listen to me or test but the ARNP at my PCP's office tested my iron, calcium and B-12...all of which were low.  I am now on supplements and watched every month.  Shortly after that (Feb 2007) I went to another Endo, that I really like and respect, and she went over my thyroid levels.  Unfortunately she had to redo all the tests because she didn't get all notes and records by the time of my appointment from my other Endo.  She wasn't optimistic that she would get much info from his office so we did the new tests and when or if we got the other results in then we would factor that in as well.  Long story short...we found other problems and she stated that I had "late symptoms" regarding my thyroid and we made the decision to to a total thyroidectomy...we got the other doctors reports a week before my surgery and she was more convinced that I needed the surgery.  I had two second opinions as well as meeting with a surgeon and they all agreed that this was the best way to go.  Fortunately, my turned out to be confirmed Hashimoto's thyroiditis with no cancer.  It was the size of two large grapefruits on both sides as well as being substernal and wrapping around my windpipe.  
My point is that some docs will listen to you and work with you and others are content to make you think it is in your head and all you need to do is lose weight and take antidepressants.
Thanks
Suzie

[SuzieQTT]

BTW...my doctor was concerned because I had gone on undiagnosed with these deficiencies for so long because she said usually if you don't catch and treat the symptoms early (within the first 2-3 months) you can develop peripheral neuropathy...which can become permanent leading to disability or death.

[Jellyz]

I don't know if I have neuropathy...my new endo basically says everything I'm feeling has nothing to do w/my thyroid issues but i do find it all too coincidental....

this began several months ago, while my TSH was on its way down from .6 to .04 while I was 5 weeks postpartum and awaiting my TT...and has gotten worse since i started suppression for cancer.

I do experience muscle twitching, numbness/heaviness/burning /tingling sensations all over my body...the heaviness is primarily right sided-carpal tunnel type pain in the arm and leg.  also,   heaviness especially in my face, jaw, ear region.   i have brain fog, difficulty finding words, saying the wrong words, stuttering to find the right word, feeling clumsy, etc.

it took about 5 weeks for the heaviness to go away, after it started in an episode like fashion during extreme anxiety and stress.     i had another episode a couple of weeks ago and that's when the heaviness set in along with the burning/tingling/electric sensation all over.

i've had a brain MRI and it's clear, but other than that, my next step is to see a neurologist on my primary's recommendation.

[Nurseynurse714]

I get neuropathies too. It started to get really bad about a year ago and I was subsequently dx'd with Hashi's just about a month ago. The neuropathies/parasthesias started in my feet, but are now in my hands (pins and needles). It's worse at night when I'm sleeping. When my alarm clock goes off in the morning, I can't even shut it off because I can't feel my hands and end up knocking everything else off of the night stand trying to get the alarm clock to shut up! I also understand the water running down your leg feeling and the shooting pain in your arms/fingers/hands thing. I have read on numerous sites about the incidence of neuropathies with thyroid disorders. It seems that they say the reason is that w/ thyroid disorders there is often a lot of swelling in your tissues which in turn put pressure on the nerves creating the pins and needles that we feel. I do notice that these sensations (or lack thereof) are much more pronounced if I have been working a lot of work with my hands/arms such as yardwork.

[msfergy]

Yes them water like feelings are awful, I am only on .50 Levothyroxine I wonder why everyone else takes alot more than me. I also was reading where the generic wasn't as good as the regular strange but maybe I should get the brand name next time. Another thing I been getting lately is pain under my arms that wont go away, like the lymp nodes there. Can't wait to see what happens tomorrow.
Take Care
P.S. I notice it said you have Graves, that is what my Grandpa had which was many years ago and he died of that but way back then they didn't do nothing for the thyroid I guess.

[Jellyz]

what exactly are neurophathies?     does it include the sensations beyond pins and needles - i.e.  burning feelings in the skin and electric 'zaps' ?   i've had a few of those that felt like lightning bolts to my leg where it bends at the groin/hip area.  scared the daylights out of me.

jelly

[msfergy]

Maybe that is why my nerve conduction study showed a problem on L5 and S1 which was over a yr. ago and they just don't say anything about that, my sciatic nerve is awful I cannot even walk over 15 minutes because of it, i get pain and numbness down the right leg severe. I never found sites that said neuro. with thyroid and my Endo just doen't relate to it which is why I am doing this and for all the others that have the same problems and there Endos don't relate to it either. I just wonder if it is leading to nerve damage, or like SuzieQTT wrote about it being permanent.
Thank for your support!

[pjgovitz]

Briefly, 18 years of hashs/graves...many different synthroid doses, RAI 3 months ago, ...diagnosed with fibromyalgia in 96 ..had a few years without pain(thyroid had stabilized for 2 years) since have never been without pain. Sitting  for long periods is the worse thing for me. Pain in most joints and muscles. some docs say thyroid, some say not, personally I believe it's all thyroid related.

[msfergy]

Thank You for your comment.

[msfergy]

Well I went to my appt. today with the internal med Doc., and we are not crazy! She did inform me that most of her Thyroid patients do have neuropathy problems. So I guess this does pretty much solve our reason, the only thing now is I wonder if it is due to being underdiagnosed for to long, as in me I have had this problem for 2 yrs. and was only seeing a nurse prac. that just gave me medicine and never sent me for a ultra sound or anything, if this thyroiditis would have been treated a long time ago would I be this way?  She did up my medicine to .75 because I been so tired lately and is recomending I have the whole thyroid taken out but I am not to sure about doing that, the surgeon suggested I just have the left lobe taken out where the solid nodule is. It can be tested better as in to what type of thyroiditis it is and if there is anything else that comes up if so then they would remove the rest later. She also said the neuropathy may never go away and the best thing to do is exercise it. Well folks thats all the info I have for now.
My test results in April were
TSH-1.78
Free T-3 3.56
Free T-4 .98
Hope I wrote them numbers right was in a hurry as she was telling me them.