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.

[Barb135]

Have you had vitamin B12 levels tested?  The type of neuropathy you're describing is quite common with long standing B12 deficiency... I have Pernicious Anemia that wasn't diagnosed for many years; as a result, I have peripheral neuropathy that causes burning, numbness, tingling and the muscle twitching you describe in my feet. It almost feels like an electrical impulse.  

Have you been prescribed anti-thyroid medication?  Do you know if you have Graves Disease?

[beautifully_entropy]

Let me clarify: TSH = <0.01 (normal 0.32-5.00 mclU/mL)
Free T3 12.9 (normal 2.0-4.4 pg/mL)
Free T4 3.2 (normal 0.7-1.9 ng/dL)

[beautifully_entropy]

I have hyperthyroidism for about 8 months now TSH was <0.01 and high T3 and T4. I have had a lot of leg pain and numbness in my feet lately, tingling so much that it hurts. And lately I've noticed quite a bit of muscle twitching - sometimes it's not external (I can feel it but it's inside my muscle, not an outer extremity) and sometimes it's my wrist or ankle or finger. It happens all over, my stomach, my eyelids, my thighs, my arms, everywhere. It's starting to freak me out.

[gimel]

Please post whatever thyroid test results you have, along with their reference ranges shown on the lab report.  Then members will be better able to assess the adequacy of your testing and be able to advise you on what tests you should get done.  

[xrds]

omg, I cannot believe I have come across this. I have had hypothyroidism for almost 10 years. have been on thyroxine for almost as long. I am now taking 100micro grams a day.

For over 2 years now I have been having numbness/tingling in hands and feet. severe muscle spasms down right leg to the point of being unable to walk. I am stumbling over with a strange dizziness. I can no longer use my right hand to write or grip.
I have been tested for MS also.but that came back negative.

I was diagnoses with parathesia due to numbness all down my right side. and trigeminal neuralgia in my face, numbness and tingling all around the right side of face.
My levels have been up and down over the years and have different dosages of thyroxine.

My neurologist doesn't really know what is going on. I will say that I have had trouble with my spine and popped discs, however the specialist doesn't put all my symptoms down to the spinal problem.

I havnt been able to work since all this started. I am in bed more than out, with severe fatigue and an incredible headache. severe brain fog, cant remember wht I had started saying, can remember where I am supposed to be, forgetting peoples names.
I also have a vitamin  deficiancy.
My blood test did show that my csr was right up. Don't know if that has anything to with it.
I never would have put all this in with my thyroid, no doctor has suggested it. I did see on a medical show a lady who had 'stiff person syndrome'. which is also associated with thyroid problems, and have been referred back to neurologist to discuss this.
So after all of these symptoms we are having, has anyone been able to get them soreted to the pont they can work again?

[paulvand]

I have hyperthyroiditis.  I just started getting the tingling, numbness and pain in my feet a couple weeks ago. I also have. Vitamin D deficiency.  Did you ever find any answers or get better? I know it was 6 years ago.

[farrenmataele]

I have hashimotos thyroidisis for three years now with three attacks of being hyper. During these times where my tsh is a .001 and my antibodies are at 312. I can not think clearly. I forget words that I use regularly, I am extremely aggressive, my arms tingle at night, I loose my hair , in mid sentence I just stop. I forget what I was going to say, for the life of me I can not read a email because in the first three sentences I lose patients. I can't sleep. I drop things, I also forget to pick up my kids or forget they are in my car. This is very alarming. I asked my doctor to test me for hashimotos pathology but I was turned down by my endo saying that this is a controversial disease and I need to just continue taking my levothyroid meds. But she has admitted that she can not explain some of my above symptoms. I do not know what to do. I am a CEO of a company and I am finding more and more difficult to maintain

Please help is there any doctors in southern orange county California that specialize in this? I have looked but no luck

[sheker]

I am Hypo patirent since March,2006,since then never feeling better.
Initially pain started back side of head,doctor ordered MRI two time later this was gone with various medications.

Then pain started at wrist,then elbow,feet then every part of body,Rhumatologist confirmed i have Fibromyalgia and taking LYRICA since last 3 years.

For last 6  months,new symptoms started like colding/icing at joints and bones.
Went to Neuro doctor,and did EMG,confirmed i have neuropathy.

For last two months,my problems are worse includes shocks,muscle pain mostly on the legs and thighs.
Also shocks spreading throughout body,these are worse on sitting in the chair.

My current medication :
B12 1000mcg
D Vit 2000mcg/day
Lyrica 75mg(150 mg per day)
Levothyroxin 80mcg

I am not able to survive in the work ,What else my doctors missing ?

[kl42]

had it bad! nerveres firing off tremors for months  twitches,  shaking, i believe now all thyoid related !!  caused all of it! .99 percent gone 2 years later after a tt, nov 08

[bacherp]

Yes, yes.  Hypo (TSH first measured at 55) aspiration positive for Hashimoto's 10 years ago.  Neuropathy symptoms getting worse:  waking up with burning hands and feet.  Exhaustion also a problem.

Not diabetic.  low b12 is uncertain as I chew supplements.

Working on this issue now.

I definitely have both.

[msfergy]

Did you have c section? I had c section for both my daughters and that can also create them problems by throwing the pelvis off, need to see ortho and have test done like mylogram and discectomy to find that out, all the MRIs I had did not really show the problem. Goodluck to you...

[SassB]

Hi lush ones.

I'm only newly diagnosed but I thought the continued numbness and tingling down both legs and feet was damage from my epidural/spinal needed for the birth of my twins. I have also continued to have carpel tunnel. I also have muscle cramps and pins-n-needles if I don't watch my positioning.

This has been so bad at times that I've had to stop walking as my numbness has meant I cannot balance. I didn't even link it to my thyroid. I'm looking forward to seeing my endo-gynae and endo in October. I'm hoping that time on this forum will help equip me with knowledge and questions to take with me.

L. xo.

[msfergy]

Wow! I can't beleive how far this poll has gotten that I started over a year ago. Thank You to all that have joined and to any of you that your Docs say none of this is thyroid related just print all this and take it with you and tell them to read it in there free time, I did that but it wasn't near as long back then. I now have a Doctor that listens to me and goes with my stmptoms and I am so Blessed to have him. Alot of my problem I did find out after I could not walk,sit or stand anymore it was coming from my lumbar which I just had a fusion done July 2,2008 and it took that long for the ortho doc to finally do something and run better test to find that problem, as for my thyroid time will tell after I heal from the fusion, I am still getting numb fingers and some other wierd symptoms still, I also went thru a full hysterectomy on my journey as well and all the steroids i had been on were also affecting me severe! I was so bloated it made my throat feel swelled constant which I kept thinking was my thyroid. Geeeeez I could type for hours over all this. Take care to you all....... God Bless

[baffledperson]

These last two in a half years have been the worse  for me. I run a daycare I used to be energetic bubbly hardly moody.
now first I was diagnosed with rsd that sucked was on meds for that I do not believe in taking pain meds but the prescription I was taking made me loose my memory so needed to take something for that. After a month a two suddenly started feeling pain toes numbing hair between them coldness noone could touch the whole right side of me. I thought now i was going crazy  back to doctors at that time now i was diagnosed with neuropathys also in this generation you have to be your own doctor and do your own research. i needed to find out what kind of neuropathy i guess i was lucky I got autonomic and small fiber periphal no idea what they all need that's why we could use a doctor to talk to.I am so lonely with this illness not understanding and what to expect. Today out of the blue decided to go for breakfst with husband and kids got so dizzy and nausea ready to faint had to come home. all day long felt like this and newest thing face hot and feel sweaty but not.

thanks for listening please excuse the errors hands dont work
Jill

[jmclain]

I am "subclinical" hypothyroid with a TSH of 4.30.  Initially it was difficult to get a prescription for synthyroid.  I was having multiple symptoms including neuropathy in my hands and feet, fasciculations (twitches), fatique, dry skin and hair, weight loss.  Also I have a lot of bicep pain.  I was tested for everything from lyme disease to MS.  I've been to a neurologist, neurosurgeon and endocrinologist.  No one could find anything wrong.  Finally I found  the 2003 bulletin from the AACE stating anything greater than 3.03 should be considered as possibly abnormal depending on symptoms.  I took this to my family practice and pointed out that 5 years ago when I was fine my tsh was 1.8, when I first  started feeling bad 2 years ago my tsh was 3.4 and when I was at my worst  tsh was 4.3.   It was'nt until I took all my lab and actually lined them up, that I was able to make the connection.  A few weeks ago I thought perhaps I didn't need the meds anymore and I stopped for about 4 days and boy what a difference.  I was tired, muscles hurt and the numb, tingly feelings returned to my feet and legs.  So yes neuropathy is a part of it.  But I have a question if anyone has an answer.  I would like an endocrinologist to follow me.  My FP hasn't  even checked my TSH, he gave 25mcg of synthroid 5 months ago and that was it. The endo i first went to did not want to treat me.  Is there anyway to "interview" a physician to find out their beliefs on treating subclinical before going for the first visit.  I'm sure my insurance is going to decline paying if  I see multiple endo's with the hugh new patient charge every time.        Thanks, J

[msfergy]

Well RSD I never heard of and o they haven't. DOC72 that sounds just like me and the water running down the leg, I have mentioned that over and over to every Doc and they look at me funny so I don't know what to think, my thyroid levels have always came back fine but high antibodies although last time the antibodies were down to 140 so I dont know if I should take more synthroid or what, actually I have cut back on it to see if it would make a dif. also the front of my throat always feels and looks swollen, I do have spine issues which I am going back to ortho next week to get it all hashed out about sever leg pain(chronic for a year now) they claim is not the sciatic nerve it runs from lower back to right buttock down the back of leg then moves to the outer part out to foot. I have been restricted of doing anything for a year and now have gained 50 pounds plus been on steroids for a year which I am now cutting back on my own, thinking maybe I have alot of water build up and could that be the water I feel running down my leg? Does that sound silly? Geeeeeeeeee I don't know also the front part of the right ankle looks swollen when the pain kicks in. I will have to check out that RSD and see what it says. Doc you sound like me!!!

[worriedinmd]

I have RLS, too, as does a woman I work with who is going through her initial diagnosis with thyroid issues right now. It does makes one wonder...

[Dee603]

I was diagnosed with hyperthyroid 3 months ago....after reading all these posts, it brings a great relief to me....I have many problems with my legs and feet, but it generally happens at night when I try to sleep...I'm not sure if it's restless leg syndrome or what...on my left upper arm, just above my elbow I have such tenderness and pain...I can always feel it, but if someone was to barely touch it, a shock wave goes thru me....I have other muscle aches, but nothing as severe as the pain in my muscle in my left arm...I am finally getting a thyroid scan done on the 27th and 28th....didn't realize it took 2 days to do....I'm sorry to hear how others suffer..I did tell my doctor about the muscle pain and she told me that the PTU would take care of it...it didn't....lol...story of my life

[worriedinmd]

I have been awakened in the middle of the night because my arms hurt from the circulation. Never thought about its being connected to my thyroid though. All my bloodwork has been normal, so it may just be a coincidence.
- v

[ChitChatNine]

Did they ever talk about RSD (reflex sympathetic dystrophy) .. it starts with the peripheral nerves ?

C~

[Melissa072]

I have just read all your posts and am very interested.
I don't know a lot about thryoid problems etc but have had a lot of neurological stuff going on in the last 12 months. Tingling hands, feet, groin, numbish feel to feet and ankles, burning, cold spots, feeling like water running down leg, face pain, dizziness, and most is still going on after a year, very annoying.
I have had 3 mri's of brain and whole spine to look for ms, all clear, as well as a negative lumbar puncture. I have a multi nodular goitre, and very high levels of thyroid antibodies, my tsh is fine or normal. Neuro diagnosed me with hashimotos enc(some long name) due to the thyroid antibodies and neurological symptons which is steroid responsive, I have had 2 lots of steroids though and no change. I'm curious, does anyone else have several neurological symptons going on and have normal thryroid but elevated thryoid antibodies? I'm at my wits end, been searching for answers for a year now to no avail.

[msfergy]

I still do not know to this day what is coming from where, had MRIs done over and over and everything was consistant with my pain, Pain Doc just advised me the other day after my third visit to him that I have Fibromyalgia so now back to step one and confused, not sure if he is just a quake or what but I still beleive it is coming from my spine or I really have just lost my mind somewhere, I now started St. Johns Wart for depression to see if it might help me out, the Lyrica makes me feel so tired and druged.
Tina

[Manxie]

Me too! Recently diagnosed with hypo have had the most awful carpel tunnel syndrome- so bad I have had to have a dictator thing at work (cant rememebr the name! brian fog!!!) becos I cant write legibly any more. Wearing a splint at night (which I bought mysoef as doc had no suggestions!) has helped but I still have awful pain in thumb joints (worse on right), Sometimes get strange sensations in feet and down right hand side of face too. Doc does seem to accept these are hypo related (well so far anyway!)
           Love Manxie

[bluefishga]

I have had hypothyroidism since I was 13 years old. I am 36 now and have had 4 children. When I was diagnosed it was because I was lactating (yes at 13 , high prolactin levels) I was very jaundiced and my face looked like the moon. My lips were wide and my whole face was distorted. I slept about 18-20 hrs a day weighed 89 lbs. needed gloves in the summer.. my body temp was 95. I was stopped in the hall at my school..the dr's knew I wasn't well. I got to normal after about a year or so of adjusting my Synthroid. settled around 125 mcg this was great until I began having children..my need for synthroid has gone up with each child  I now take 300mcg. I also became diabetic with each pregnancy and needed to inject insulin 4x a day. My highest weight was 156 after my 4th child ..my normal  (current ) is around 127-130. I do run and eat well. Though I have to really fight fatique , a lot of muscle and neck pain especially if I don't run regularly. I do have neuropathy but i ha diabetes a few times, and at higher weights I would have diabetes..I had it at 156lbs. I am 5'3". I am concerned though that I may actually have a pituitary issue.

Your TSH (Thyroid Stimulating Hormone), which is the best test of thyroid function, is low with a value of 0.04.

Your Prolactin is normal with a value of 18.1. (I have galactorrhea)

Your T3 Uptake is normal with a value of 34.

Your Thyroxine Free is normal with a value of 1.49.  (i thought she ran a t4 not ft4 which would indicate pituitary.?

Any doctors out there...why do I take such doses. I am to the letter about my well being, no skipping meds, etc. I am exhausted though...heart palpitations ( i have had them on an ekg at the hospital, they lasted over 8 hours) I have never eaten more than 1500 calories a day. (not counting pms days..lol)anyhow..just hoping for advice, I'm not new to any of this. it's been over 20 years.