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]

[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.

[hashimoto37]

I am sooo happy to hear Im not going crazy... I started having all those symptoms.. the tingling through out the body and face and I was told maybe I was diabetic and when i did my blood work it came back normal... but my TSH is at 12 , since then the tingling is getting worse...Im on .125mg Synthroid but I dont think its enough... I have an appointment with my Endo on Sept 20th , hopefully he will listen and do something about my symptoms...I am soo glad for this site.. I dont want you to think your illness makes me feel better , its just makes me understand that Im not alone... god bless you all... I hope we will get better soon.

[msfergy]

Your welcome, also I have been on the generic levothyroxine and I am switching to name brand because she said it is true the generic is less effective for some people. You may want to print all this out of all the people with the same problems and give your endo a copy, I gave her a copy and told her to read all these stories of people like me and gave her the website but she already told me she relates to everything I am saying and I told her the Endo I was going to did not and acted as if I should be fine. Grrrrrrr Anyway I guess I am up for a surgery now and that scares me! Keep in touch and let me know how you are and what you find out, and if you find a cure, OUCH!

[hashimoto37]

Hi there , thank you for replying...It feels good to know  people out there really care...you know what really bothers me , Ive been dealing with these symptoms for over a year since I had a partial thryoid removed ..my biopsy came back supicious and they decided to check the half to see if it was cancer and thank god the pathalogy report came back hashimoto... but since then my tsh has been climbing...its really annoying .. and since then my symptoms are sooo bad... I havethe tingling through out the body...makes me crazy!!...looks like ill be going for surgery again if my tsh doesnt calm down... what a joke!!!!!!!!!!!!!...anyway, I will pass the word around and I will take a copy of this and show it to my endo because he's one of those Dr's who say its all in my head...NICE!!!!!!!!!!!....Pls let me know how ur doing ...keep in touch .. all the best to you!!.

[msfergy]

Thats why I am worried about having a half tt done, maybe i just need to retry the biopsy. I dont want to be like this forever! If I could get my tsh level and stay there i might turn out ok, hmmmm so undecided! My first biopsy all they got was blood, and if i do the surgery they will know forsure and what type of thyroiditis it is.

[msfergy]

WOW  I am so glad i've stumbled onto this site.  I had ral done when i was eighteen.  I was totally ignorant!!  I have been on 125 synthroid most of my adult life.  About 10 years ago was put on 150. Before first child  I really lived a wonderful life on the synthroid.  I did have slightly bulging eyes but actually made my eyes seem wider set and larger so seemingly added to my attractiveness.  I had no panic attacks and seemingly stayed a size 7 to 9 with very little dieting.  That romance lasted about 5 years.  During my pregnancy I gained weight rapidly and then after birth not only did i not take the weight off ( I went from 135 to 180 ) my eyes GREW dramatically.  I looked like that comedian Marty Feldman. One eye looking up and one to the side and protruding grossly.   This happened within a two week period after my Katie's birth.  I then had oribital decompression. The bone under eye is removed and my eyes rest now on muscle.  Its ok but my eyes are a tiny bit farther in and also give the appearance of closer set. I've also lost some periphal vision. I now have to move my head down to see the floor. YUCK LMAO   I went on to have two more children and two miscarriages with little incident other than staying at around  170 pounds.  After my Abbey was born in 97  I discovered exercise and lifting weights.  I followed a very strict diet, got rid of a lot of processed foods and candy,sugar.  It was about 1200 calories a day.  I did manage to get down to 150 and was able to wear a size 10.  As long as i kept up the diet most of the time and stayed active i could stay there.  I was actually then unhappy with all the work I was doing, why I wasnt a size 5 or 7.  I was only 37 not middle aged after all LOL    We moved and I went to a new family doctor not an endo just a general practitioner. She checked tsh and actually involved me in the process.  She was aware of keeping tsh in the lower range of normal. She had hoped to raise my synthroid but when test came back I was already there!!  She actually then lowered my dose to 125!!!  It made sense but i was so disheartened.  I should mention I've had panic attacks, sensation of vertigo just out of the blue.. sometimes from just browsing ebay where i'm very quiet and enjoying myself!!  These started oh about 1995 or so.  It wasnt often and was told it was acid reflux. and then later attributed to asthma, copd.  sometimes chest pain and certainly a heavy,tightening feeling.   When doc lowered my dosage it seemed I gained 15 pounds BOOM  She did another blood test 4 months later and then my tsh was at 3 so she then raised it again.  I then developed hives, unticaria. it was unbearable.  I tried benedryl but that would bring on a panic attack.  I thought maybe i've developed an allergy and also I had noticed my breathing wasnt great.So off to the allergist I went.  He prescribed zyrtek... I could do commercials for zyrtek.  I take one pill nightly.. if i dont hives are so back big time. also they did blood work and allergy tests.  The blood work showed very high antibodies. It was pointed out to me that because of the antibodies I had the excess histamine in my body.  my hives from that point would indeed be chronic and zyrtek would be a part of my life as synthroid is.I am also still gaining weight throughout this whole time.  From 2002 to now I've gained 50 pounds!!  48 to be exact.  and its been slow but steady after that initial 15 pound increase.  To be fair. I havent exercised much this last year.  I also because i'm having a pity party for myself.  I sometimes eat 2500 calories. most of the time i'm at 1800 but on occasion i will try and be good and be at 1300 or so.  basically i've let myself be normal like my family.I'm also not being on top of things as i usually am.  bills are not always paid on time, I dont cut out my coupons for the grocery(and i'm very anal about saving money)my teenagers not taking out the trash for me makes me HATE THEM. I have  no patience. My house is cluttered. I'm self absorbed. and I hate who i see in the mirror... no more makeup.. sweatpants are my friends LOL.. you get the ugly picture i'm sure. (every mans nightmare of a wife LOL) also very very painful periods have developed and sex hurts. So I keep asking my doc why. She sighs and says I'm nearing middle age.. premenapause.
I need to try harder. I can tell she thinks i'm eating ho hos,snickers and doritos in the middle of the night!!  Everyone is disgusted with me. I think maybe i'm just a loser... well....  2 months ago blood tests were tsh 10!!   YES YES i'm actually excited as I have the vindication that i'm not crazy or lazy!!  whoo hoo.  I danced on the table for about a moment then realized. uh oh.. what the hell is going on!!  I went from 1 tsh to 10 in 4 months!!Doc says we need to send you to an endo.  I'm like busting at the seams!! yeah yeah yeah  beginning of the rest of my life.  Endo will have ALL the answers.

[msfergy]

I will be normal weight again.  I will be soo organized.  My husband and children will love love love me.  I go to the appt.  Doc asked what im there for.  I'm slightly put off by that as test result are in his hands at time LMAO.  I then give background .. actually the same story that i'm sharing here.  I'm told to stop as he only has an hour.  I almost cry but i keep my composure.  he addresses my weight and says "NOONE understands metabolism" " If your looks are important to you by all means try a 800 to 900 calorie diet"  "make the calories count by all good food and take a vitamin."  He claims that because of my weight gain that my pills needed bumped to compensate for my weight gain. or maybe i just got a generic synthroid instead of the real stuff.  These were offered as to why my tsh went from 1 to 10 in four months.  I then asked about cushings disease or pituatary problems?  Good idea i'm told.. lets do a saliva test for cortisal.  OK  i wait a week for results... also my family doc put me on 175 synthroid at this time.  endo calls me at home to tell me test results were fine and that she doesnt have anything else for me.  I was sooo depressed.  I then had the bright idea of armour thyroid. natural t4 and t3.. I sell it to my family doc.  She bites LOL.. I so proudly give the script to my pharmacist LOL   I take my first grain(pill) as i plan on spliting dose up into two parts.. t3 has shorter life i'm told on internet LOL  I also take right with breakfast as i'm told this minimizes rush.  OHHHH NOOOOOO panic attack comes within 5 minutes of taking the damned thing.  I do get over it and i say to myself.. self you can do this.  I then take second grain at dinner... OOOOOOOOHHHHH NNOOOOO again with the heavy feeling in my chest. scary scary.  I dont want to give up and also because i've sold this idea to my family doc. I'm not calling her.  I go see my pharmacist and ask.. "can i get these pills cut in half and start off slower?"  He says absolutely!!! day two  I take my half grain of armour with my oatmeal thinking it will be a piece of cake.  OOHHHHH NOOOOOO here comes the chest pain. as bad as the day before. hmmmm what to do.. this is the fountain of youth.. i will not be intimated that easy.. it passes  and then at dinner a half grain. and again same dam thing.. i tell hubby.. he says now hon you havent had a heart attack yet LOL LMAO  he is right i say.  day three  half grain again with yogurt and rice cake.  i'm soo into this.. this is gonna make dieting soo worth it.... NOT  OHHHH NOOOOO i'm scared this time... I wash my face throw on sweatpants and out the door to pharmacist and buy a blood pressure and pulse monitor... I'm STILL not giving in.. nope not saying uncle yet.  symptoms start to go away as i'm approaching drug store... sooo i decide to price shop.. i know the monitor is going to be my way of knowing that these are normal symptoms and nothing to worry about.  i will use that monitor to talk me down from calling paramedics LOL  i go to target.. dont like their prices.. still feeling ok.. stop in kmart (across the street)  i'm walking down the isle and BOOM.. dizzy, labored breathing,scared shitless.. i get to blood pressure machine.. 137 over 90 and pulse is 96... I'm soo freaking out!  I go to the pharmacist and start telling him my story.. much shorter version of course as i just know i'm dying.  He asked me if i had someone at home to stay with me as i seem nervous LMAO. ya think??!!!  I then ask him is 96 pulse ok??  he says "you have been walking around the store and so yes on armour with slight exercise its not out of normal realm"  He starts to smile and smirk. i then start to smile and laugh at myself.  I head home.. in the car i get another round of OOOHHHHH NNOOOOOO.. i'm so scared.  I hit the door.. i yell for my katie to get me a bottled water,  Throw the monitor at my son Chet to find out how to take my pulse and pressure,  whine to my abbey that mommy doesnt feel good and all of you must be very good as mommy is scared.  Called doc.. i'm in thyroid storm she says.. very scary.. gives me Toprol and ekg.  This was two days ago. not allowed to do any thyroid meds for two days.. back on synthroid i go!  Hubby and I agree that try synthroid and get back to normal range in tsh then maybe try synthetic t3 cytomel.  that is if Doc will allow it!!  sorry so long just wanted to share and please if any advise for me please please bring it.   thanks bunches for reading and God bless all!!

[hashimoto37]

[hashimoto37]

[hashimoto37]

[LJ39]

Sorry I have been off site for awhile ,but somethin screwy with my password.I was glad to here that neropathies are part of thyroid disease.I always new they were and that just confirms it.  I went on armour a month ago and started getting allot of heart palp's,I know for some people,it really works,but not for me,and obviously not for you either.  I took myself off of it right away ,and started on synthroid palp's started to lessen but still had a few.  Right now I am not on anything .I am going to see how my paresthesias do .I was on just a trial of med's because my levels were within normal range.  I will see how I feel.  These sensory symptoms are horrible .By the way also had water trickling feeling right after had RAI treat done then seemed to go away.  very strange sensation.

When are you gong to have surgery done?  What did your endo Doc say about this?Hang in there.I know it can be really scary,but we are here for you.

LJ39

[hashimoto37]

Hi there , well today I woke  up with major tingling all over my body and some on my face . I took a print of this web site so my neuro can see on Sept /20th . I hate this waiting ...and too put the icing on the cake I can feel my goitre getting bigger... this all happend because the dose they were giving me wasnt enough for my weight ... since last year Sept .. it started 50mg to 75mg then on that for about 6 months til I started feeling like **** then blood work was done and noticed my TSH was up to 12 or 13 then they decided hmmmm she needs .125 mg... still not enough ... But Ill wait til sept 20th and see what my results come back... hopefully they will drop somewhat... if higher then Im gonna recommed total removal...actually I will INSIST!! .. how frustrating... let me know how ur doing ... didnt realize how big of a role the thyroid plays ... GOD HELP US ALL!!>

[msfergy]

Well I am starting on Synthroid instead of levothyroxine .75 now, I am wondering if I should give it somemore time now and let this set in before I decide on surgery (Im scared), but irregaurdless if i dont do the surgery then i need a biopsy with results and since the nodule is so far back that might still be impossible! My neuro is the one who kept telling me to go back to endo that he wasnt finding this neuro stuff in his department, it was my endo that is being stubborn about and my internal doc is the one who relates to it, only thing is there is nothing they can do for it! And I am still wondering if it is because I have been under treated so long with my thyroid because this is most seen in Hypo people and people who go hypo after there surgery, that would be my NP fault seems how I have had a problem for 2 yrs. OHhhhhhh who knows.Yes the waterfall leg stinks! I am always wiping my leg,lol. Also started new med today for my sciatic nerve forgot what its called L something. And I tried out some Noni Juice, yuck! Its suppose to boost your immune system.
Take care and keep in touch........

[Newbee2000]

I also had horrible tingling all over my body too when my tsh was 11. Now my tsh is down to 5.3 and for the most part, I only have the tingling in my feet and numbness in my hands (which I was told is carpal tunnel induced by being hypo). The tingling all over my body really improved as my tsh dropped. My endocrinologist said that I had probably has undiagnosed hashi/hypo for a few YEARS!! I'm sure that increases the amount symptoms and their duration. However, My endo MD won't exactly confirm that the tingling is due to thyroid. Yet, I've taken NUMEROUS medical tests (scans and labs with orthopedists, neurologist, endocrinologist)  which NEVER detect anything else wrong with me!!!!!! I'm completely convinced my neuropathies are due to hypo/hashi!!!!!  Good luck! This board is extremely helpful!!!!! It's helpful to know others have the same symptoms.

[msfergy]

Any others want to join?

[EmpatheticJenny]

Yes, I would like to join this discussion, even at this late date. I just finished writing an explanation of why I had polled everyone on whether they had caught more colds or seemed unusually vulnerable to other infections as a result of their thyroid problem.  I had conducted the poll because I think there are symptoms that are not the most common ones of thyroid problems, but if you ask a group of people who are struggling with the symptoms if they have had them, the "YES!" replies come rolling in.

Regarding neuropathies: I do not know where to begin. I have had numbness, tingling, and a long list of other symptoms that were neurological in nature. At one point, I was assessed to be sure I did not have a demyelinating disease (such as multiple sclerosis). All of my "wiring" checked out just fine, and I was in excellent health and not at all suffering from the symptoms, so I and the physicians who were involved shrugged it all off. Not until I was diagnosed with hypothyroidism and then began to visit this forum did I suspect that my mysterious symptoms could be the fault of my thyroid gland.

I have seen a repeating theme in the many, many comments I have read at this forum. More than a few physicians say about a symptom "It is not being caused by your thyroid gland," not knowing that there are a few physicians out there in the world that DO make the connection, and meanwhile, the symptom that supposedly cannot be caused by a thyroid problem is being reported at this forum over and over and over again. As I just said in my comment about the results of my poll about resistance to infection, the world of endocrinology REALLY needs some simple descriptive research that would tell all of us what the full range of thyroid symptoms can be.

[EmpatheticJenny]

In the comment I just posted, the sentence at the end of the last paragraph is confusing. Please pardon my brain fog....

Here is what I meant to say. I think there are symptoms that are not the most common symptoms of thyroid problems, but if you ask a group of people who are struggling with a thyroid problem if they have had the uncommon symptom or symptoms, at least some people reply "YES!" The more time I spend at this forum, the more I see an amazing disconnect between what our physicians tell us is (and is not) related to our thyroid problem and what we sufferers are actually experiencing.

[LJ39]

You said it Sista!.  Neuropathies may not be the most common symptom of thyroid disease,but there are enough people suffering from it that, do not have neurological diseases ,ms ,Lupus etc....  Doctor's have to take this into consideration when dealing with patients.  WE need to be taken seriously.  I have never felt so ill from these peripheral neuropathies.  I hope we will all get better soon.

Empatheticjenny How do do feel now? are your neuropathies gone or do you still suffer from them?  I would really like to know how long I am going to have to live like this!! thank God for this site.

LJ39

[EmpatheticJenny]

Hi, LJ--

I realized something since earlier this afternoon, when I posted my comments. The term "neuropathy" generally means nerve damage...or at least I think it does. If that is true, then I was misusing it. A few years ago, when my hypothyroidism was still flying too low under the medical radar screen to be detected, I was thoroughly assessed to be sure that I did not have a demyelinating disorder such as multiple sclerosis. I passed all the tests with flying colors. Definitely, I do not have nerve damage.

As for how I feel now: Most of my weird neurological symptoms are gone. I am not yet at a point at which I can claim victory over my thyroid problem. My wonderful endocrinologist and I are still working at getting the problem under control. When I have a bad day, though, it tends to consist of a mixture of the most typical symptoms of hypothyroidism and one or two of my "neurological" symptoms. My body's favorite symptoms in the neurological category seem to be muscle twitching and a completely inaccurate sense of how firmly I am gripping something; not until the something drops out of my hand do I realize that I was barely hanging onto it.

Although I still have bad days, I am feeling SO much better than I was a few months ago. I wish I could tell you how long you are going to have to live with your miserable symptoms, because I know the frustrated feeling of "How much longer?!" I truly identify with what you are going through. My case of hypothyroidism has never been more than mild, according to lab results (the highest TSH level I have had was 4.11), but I have been impressively unwell, and that was true for a very long stretch of time.

When you say "thank God for this site," I could not agree with you more. It is difficult enough to have a poorly understood condition (which thyroid problems really are) and to be very unwell as a result, and then it is made more difficult when doctors do not take us seriously. Mine does, actually; he has been an immense blessing, but he has not recognized some of my more unusual symptoms. It has been an enormous help to be part of this forum. As another member put it so well, it is comforting to know that your body is not uniquely weird.

Wishing you the start of bouncing back, and SOON,
Jenny

[devushka]

[devushka]

After TT in July '06, I experienced tingling, numbness in hands at night while sleeping (it woke me up). This lasted for about 6 months, but has now ceased.

[msfergy]

Well it has been 9 months for me now girls!  I already had thyroid problems for 2 yrs and i beleive i was underdiagnosed the whole time, just given 25mcg levothyroxine, went back a yr later complaing of my throat swelling, not feeling good, lazy and all hypo symptoms was sent to a ENT and my thyroid was totally ignored! December of this year is when it all hit me and i beleive it is what knocked out my adrenal gland, also was told it was thyroiditis, Grrrrrr yes we know our bodys!! My neuropathies are all over some of the time, one day it can be bad and another day not as bad, I am dealing with swollen ankles and feet now and I do not know why! Do you guys get this also? When I am on my feet awhile the hurt so bad and the doctor says uh huh grrrrrrr dont know if it is my meds or the thyroid, taking hydrocortisone for the adrenal also, or maybe its a moxture of both.
Tina

[drick008]

I'm taking other medications too. Norvasc and Lisinopril for my High Blood Pressure and these can make me lightheaded and fatigue (Hypo symptoms). My GP won't take me out of these medication, due to family history, but willing to lower the dose as long as I monitor my Blood Pressure. It is hard to figure out if the medications or being under dose for Hypo thyroid is causing the symptoms. One good news is that I just finished seeing a Cardiologist that told me that my Heart is in good condition after EKG, Stress Test, Nuclear medicine, and Echcardiogram done because I had a chest pain last May before I was told my TSH was high. I'm taking another blood test this week for TSH, Free-T3 and Free-T4 to see if my medication dose is at an optimum level. I never had a Free-T3 test before and found a place that will do it, just need to travel 8 miles.

Take care,
Rick

[LJ39]

Hi there.  So glad to here you are feeling better. I am only mildly hypo as well ,with my highest level being 6.81.  I was treated with RAI for hyperthyroid due to nodule.  I seemed to suffer transient hypo ,my levels have slowly come down .Last time I checked they were at 2,51 then I started synthroid ,then armour and stayed on 25 mcg for three months ,but it did not seem to help with paresthesias,you are right the term is actually paresthesias,but still neurological symptoms never the less, what I actually think the term is called is peripheral neuropathies .  Our tests that we have had done have ruled out central nervous system disorders so in the research that I have done we both seem to really fit into the category of peripheral neuropathy.Look it up if you have not already.   I do not think that  means that it is permenant nerve damage,but that they are caused by thyroid problems,and until our bodies ,tissues heal I think we continue to experience these symptoms.  eeg confirmed that my nervous system is working correctly,which I feel is very odd.    especially,when still suffering with these symptoms.  All day everyday for six months  You would think that eeg would show SOMETHING!! I am going in to see my neuro again to see if I can get a better  understanding of the correlation between peripheral neuropathies and thyroid .  

Last time I saw him he did not give me any clue to what he thought was causing them Just that he did not think it  was ms.

Also are you on any form of thyroxine now?? I am not ,but I am hoping that my levels will just keep going down and that I will adjust.

Jenny when you were having the paresthesias did you have them every day? What were your levels when they started??.


LJ39

[EmpatheticJenny]

Hi, folks--

Msfergy, it is infuriating that your thyroid gland was totally ignored at a time when it should have been the center of attention. Sometimes the medical care we get seems worse than no care at all.

In regard to your swollen ankles and feet: You might ask your doctor whether the swelling is related to the hydrocortisone you are taking. Two weeks ago, I started taking fludrocortisone. Let me say right away that it is a different creature from hydrocortisone, so I do not know if the actions of the two drugs are similar. My attention was grabbed, though, by your comment about your feet and ankles. Swollen ankles are one of two signs that my endocrinologist told me to watch for and tell him about it. In reading about the drug, I learned that it partly inhibits the kidneys' ability to excrete sodium. Apparently some patients are told that adhering to a low-sodium diet, in order to counterbalance their kidneys' less-effective sodium excretion, is a good idea. I am hugely grateful that I already have low-sodium-diet habits. I cannot imagine what it would do to my morale if I needed to reshape my dietary habits, on top of all the other stresses of having an uncomfortable case of hypothyroidism. Sticking to a low-sodium diet means figuring out strategies to compensate for the fact that we in the industrialized parts of the world take in an insane amount of salt. I am deeply grateful that I have the strategies worked out already and the dietary habits in place.

Anyway, I do not know if hydrocortisone has a similar effect on the kidneys, but it would be worth asking about. As for pain, there are days when I have a lot of it. This was true before I began taking fludrocortisone, so at least I know that there is no connection between it and my pain. It seems as if muscle pain that is irrational, meaning that it is all out of proportion to any stress I am putting on my body, is in some way caused by my endocrine system. I am not sure whether my struggling thyroid gland is the villain or whether it is a lack of estrogen that has caused the problem. Having irrational muscle pain began during the perimenopausal phase of my life. When I began taking an oral contraceptive as hormone replacement therapy, it made a dramatic difference in my pain. Once I began taking levothyroxine, I still needed to take estrogen (to prevent hot flashes, if for no other reasons), but the two drugs fought with each other like two kids in the back seat of a car. It took many, many weeks before my thyroid gland seemed to settle down, feel well supported by the medication, and not give me up-and-down difficulties. Since June, I have tolerated a reasonably high dose of estrogen again, and I am not having nearly as much muscle pain as I had.

It is ALL so complicated and interconnected, and here I would to bring LJ into the conversation. As you could tell from my last paragraph, I am indeed taking thyroxine in the form of synthetic levothyroxine ("synthetic" meaning synthesized in a laboratory; they use recombinant DNA technology to produce a drug that is chemically identical to what your thyroid gland produces--pretty cool, huh?).

Thank you for clarifying the term "neuropathy" for me. I am glad that you are going to see the neuro again to try to get an explanation of why our thyroid glands, when they are not keeping up with their workloads, can produce symptoms that are like the symptoms of neurological diseases. I would be very interested in knowing what the neuro says, although I am afraid that you may get only a reply of "Who knows?" to your questions. The underlying mechanics may be one of those areas of medicine in which there is a lot of speculation about why the correlations are what they are, but no real answers about mechanics. After beginning to see a rheumatologist for my muscle pain, and also to have him oversee a thorough assessment of my nervous system, I soon learned that one of my LEAST favorite phrases in the English language is "poorly understood."

In fact, I think that any physician who was honest would apply that phrase to what I have been through as a whole. I began having paresthesias somewhat dramatically thirteen years ago. Whatever is going on inside of me, it always has had its own internal logic about the timing with which symptoms have come and gone, and the logic has never made sense to me or to any of my physicians. The summer of 1994, I went through almost the entire summer with odd neurological symptoms every day. They were not severe enough to scare me seriously (I once worked as a nurse's aide on a neurological unit, so I had some points of comparison that were helpful). Still, the symptoms were quite odd and therefore unsettling.

Then the symptoms mostly went away, although I would have a quirky symptom every so often. I was in graduate school at the time, so my access to medical care was extremely limited. Every stereotype about university student health care definitely applied. I tried to stay out of the student health center as much as I could.

A year later, in the summer of 1995, I had the first relatively obvious symptoms of perimenopause. I had not heard the term at that point; I knew nothing about it, so I did not recognize my sleep disturbances as having a hormonal cause. I was already well into problems with muscle pain. By the next summer, in 1996, I was realizing that both muscle pain and sleep disturbances varied according to where I was in my menstrual cycle. The variation also was true to an extent with some of the "neurological" stuff, although the cause-and-effect connection was not quite as clear.

Eventually, when I was out of school and had access to decent medical care, the time came when my physicians and I blamed all of my symptoms on an unusually difficult and odd perimenopausal/menopausal phase. Now, looking backward in time, I do think that a falling level of estrogen was to blame for my sleep problems and for my muscle pain. For the most part, however, the neurological symptoms came and went on their own schedule, seemingly unaffected by hormone replacement therapy. I thought it was odd, but since I was healthy and energetic, I just shrugged it off as one of those bodily mysteries.

I now think that the first parathesias, in the summer of 1994, were the first sign that my thyroid gland was starting to struggle. The first time I had TSH assessed was the autumn of 1997. My level was 2.4. That would qualify as "normal" even today, when the upper end of "normal" is lower than it used to be. Then again, thanks to the training in research and statistics that I was in graduate school to get, I can understand why the author of a journal article I read predicted that some day, the upper end of normal for TSH will be 2.0.

Whether or not that happens, I think it is very odd that at the end of November in 2000, my TSH level was 1.58, and some of the most dramatic neurological "fireworks" of my life would burst forth about two weeks later and stay with me most of the time for many weeks. I know there can be a non-trivial amount of variation from a person's "true" TSH level at any one time of testing, but still... The weirdness I had at the end of 2000 and the very beginning of 2001 makes no more sense from the position of hindsight than it did at the time. I was doing beautifully on hormone replacement therapy--sleeping like a champion and having minimal muscle pain--and my TSH level seemingly was well within the normal range, even if the 1.58 happened to be lower than what my "true" level was at that time.

From that point onward, my TSH bobbed up and down the scale. I just looked up my entire TSH history, but I am going to stop here, post this much of my reply, and then post Part II, as I have received a warning that I have exceeded the 8,000-character limit....

[EmpatheticJenny]

As I was saying, I just looked up my entire TSH-levels history. Here is is, beginning with the first time I had TSH assessed and ending with June of last year, when the endocrinologist I had started seeing diagnosed hypothyroidism:
9/2/97       2.4
11/28/00   1.58
1/5/01       2.46
1/4/02       2.46
4/30/03     3.32
7/23/04     2.93
9/30/05     2.85
6/6/06       4.11
As you can see, it is not a tidy picture at all. I had a high level of well-being from 1999 onward. Beginning in February of 2003, I began to have a strange symptom here and there, but the early symptoms did not really call for any treatment. They make more sense when looked at together than they did at the time, when they came and went one at a time. The first symptom was a ferocious attack of hives, but it came at the very end of a minor upper respiratory illness. The immune system can have that reaction to an illness, and the fact that I then continued to have a single hive every time I had the pressure of a deadline at work seemed like one of those "bodily mystery" sorts of things. A few months later, I began to have a Raynaud syndrome episode once in awhile. Raynauds syndrome (where either toes or fingers turn white in response to being chilled) becomes more common with age, for a reason that no one understands, but it seems harmless. Looking backward in time, those two symptoms all but shout "hypothyroidism," but I can understand why the physicians I was seeing missed the diagnosis. Then my TSH level went down again (at the same time that my level of work-related stress went up the scale a lot, so go figure).

The bottom line truth, I am afraid, is that the pattern any one person will follow is a lot more unpredictable than many physicians imply. I also suspect that the underlying mechanics are VERY poorly understood. The complexity that is involved is mind-boggling, too. I do not even try to understand fully the picture that my endocrinologist has of what is happening inside of me. I couldn't. Even my rheumatologist tells me that he is in over his head when trying to understand the endocrine system in the way that my endocrinologist understands.

...and to think that endocrine system problems are quite common! How does any of the essential work of the world get done, if so many of us are limping along with poorly understood aches and pains? I am afraid that I have been no help to you at all as you both limp along with your sets of aches and pains. If empathy helps, however, know that I feel tons of empathy for both of you!

Sincerely,
Jenny

[msfergy]

Jenny you are a very smart person and give good understanding! Yes I think back in time of things that have happened to me also and wonder what my tsh levels were at that time. I am going to that doctors office tomorrow and asking for a copy of all my thyroid testing they done in the past and i am going to not try and scream at them while I am there, I think they know i already fired them along my way as i had all my records transfered to another place so they prolly hate me now since i am not there lil pig anymore, but the bad part is i really liked that nurse practioner even though she was demanding for 5 months to figure this all out on her own instead of turnig me over to higher athoritys.
Well her Boss the Doctor there that is never there except 1/2 day on Friday told her to stop seeing me and it was all in my head LMAO! Grrrrrr boy I was mad and I think she was to because she knows me and knows of all the 10 years I was seeing her I never came in for nothing unless I really needed to which started the pass 2 yrs. In ref. to Hydrocortisone now, my internal med doc said yes it can cause adema, my endo says NO, lol again, my last apt with him was 8am and i wasnt on my feet much before i went in so he saw no swelling of course and the other steroid u mentioned fludrocortisone, I was on that with the hydro in the hospital and they took me off it because my hands an feet were swelling and they saw it. You know that show on the disovery channel mystery diseases or something like that? I think we should call them and let them give us our diagnose, I wonder what the endos would think about that!  Everywhere I been they say your thyroid does do alot of wierd things! The Theropist, Orthapedic Group, Chiropractor, Neuroligist, now if they all seem to think that and know that then i guess they are smarter. For now i am just suffering with my feet I havent had much numbness and tingling lately so i wonder what my levels are now, i am scared to get surgery which i have to call tomorrow to make my preop appt., i dunno why i am so scared! But I guess it is best to get that nodule tested and see what they say. If I knew the surgery would take away all my missery I wouldnt care but I hear it doesn't take away all the symptoms. :(  Oh and yes I should of stated that different about neuropathy, we prolly would of had alot more responces. Talk to you later.......... Take care.
Tina

[EmpatheticJenny]

Hi, Tina--

Thank you for your kind words, although I really do not think that I am out of the ordinary in the area of being smart. As I went through graduate school, I realized that all graduate school (including medical school) is just a form of trade school. People who go through it spend a lot of time being trained in research and how to think about it, which can make us seem a lot smarter than we are.

The reality is that we are a lot like electricians. We have learned a lot of detailed knowledge, and we went through a form of apprenticeship to learn how to use the details, but virtually anyone who is interested enough in the skills to want to spend a few years getting them can get through the trade school. It is the best-kept secret in the world, and it infuriates me. If the truth were spoken more often--that medical school is only trade school and not the big deal that we are led to believe it is--it might make it a little harder for the crummier physicians to relate to us patients in ways that are highly destructive.

Good for you for marching back to the office of the doctor you fired (and three cheers for you for firing the jerk, too!) and asking for copies of your lab results. The best thing we thyroid sufferers can do for ourselves is have a strong sense of ownership about our lab results, about information, and about any decisions that need to be made.

I am sorry to hear that you need to have surgery. My work has been very heavy this summer, so I have not been at the forum much, and I did not read about your history when you described it. Is there a date when you posted the details? If you could tell me that, and what subject header you used, I would like to read the background information that you have provided.

In regard to surgery and whether it takes away all the symptoms: People have such different experiences that I think it is difficult to predict. I know that it sounds sort of pathetic, but I mean it sincerely when I say: Don't give up hope, and hang in there! I have seen people at this forum write descriptions of intense suffering, and then a few months later, they were one of the people saying, "Hang in there; it DOES get better."

I just hope that you are in circumstances that make it possible for you to keep looking for a good endocrinologist. One thing I have learned at the forum is how common it is to need to try several times to find a good doc before finally finding one.

Thank you for the "take care" thought. You do the same!

With best wishes,
Jenny

[msfergy]

They were listed 8/18 as the following, Please Help, second part and hold on I have to go reread the third one,lol.

[msfergy]

The other one was, what is going on.

[EmpatheticJenny]

Hi, Tina--

Thanks for pointing my nose in the right direction! I am about to leave my office for home, and then tomorrow and Wednesday probably will be wild and woolly days. I will find your previous posts, though, and be glad to know more of your story. For the moment, do take good care of yourself. You are in a tough situation, for sure.

Sending you an e-hug,
Jenny

[DLA]

Sorry, I just read your post to me from last week some time.  Had a killer flu so was not on here much at all.  

I get those pains from under my arms too.  Kinda scary, huh?  Thought it was just me.  Okay, here's another more personal one.  Those little stitch pains in your breasts?  I know all women get these, but I have had these so bad in the years since I have been dealing with thyriod problems.  They're everywhere, not one specific place.  My mom thinks I'm crazy.  They last soooooo long.  Just wondering.

After reading all of these posts am wondering something about my face.  Think I'll post my own question now so maybe will be seen by more people.  Oh, the left side of my face looks like I have had a mild stroke, but it is not paralyzed like Bell's Palsy.  Don't know.

Thank you for this thread.  Was another place I thought I was alone.

God bless you.
Dac

[msfergy]

Hello, them pains under my arms do go to my breast also, i have always had sensitive breast and cystic thought it was because i drink coffee and smoke. Sorry to here about the flu, yuck!  About your face, my face was numb on the left side for awhile but it has went away since i had stayed on sublingo B12, that B12 does help with numbness because i can tell a diff. And you may of had a episode of bells if it hasn't straightened out, when i first got sick in december i thought i had a stroke and went to the ER and that doc just looked at me and said i can tell you didnt have a stroke because my face all seemed to look ok.
Tina

[msfergy]

OOPS! You are DLA not DAC, anyway i read they think you have a adrenal problem, so what is going on with that? I was diagnosed insuff. and now on hydrocortisone.
Tina

[DLA]

Yeah, need to talk to dr about my face, but seems like a mute point now.  It's not numb, it just sags like someone who's had a stroke.  When I get really tired, like right now, it looks like the left side of my face is trying to slide off my skull.  When I'm well rested not as bad.  May be a case of Bell's, but at the time it affected my eye so badly that couldn't drive myself to dr. and of course every one in my family thinks I am a hypochondriac.  I think people look at us and go, well, I can't see it and it's been so long, it must be in her head.  Sure you have come across some of this.  Well, this is my family.

Eventually will talk to dr about it, I guess.  Seems like so many more pressing matters. lol

Dac

[msfergy]

yeah I know what you mean about family and so on, I been through it and they don't want to hear me nomore I guess I drove them all nuts along with me, I told them they dont have to hear me anymore because i found people like me now, lol.

[EmpatheticJenny]

Hi, gals--

Tina, you have really been through it! I read your previous posts before starting to write this reply. I think that it is incredibly difficult not to become totally disillusioned with doctors. They can give us such bad emotional bruises, and just when we are the least able to cope with being bruised. Although it is wonderful to find a physician who takes you seriously, treats you with authentic respect, and really cares about what happens to you, the search to find someone like that can be horrible. I feel for you, truly.

I also feel for you in regard to the frustration of having an assortment of symptoms that seem to go on and on, with no answers as to what is behind the symptoms. It does not help when physicians do not necessarily know the full range of possible thyroid symptoms, and I think that many of them do not. So many of us have had hives as a thyroid-related symptom that it seems too bad it has not been considered seriously in your case, rather than what seems a little like conclusion-jumping that the problem must be a sulfa allergy.

...and then it adds even more to our emotional burdens when the people around us do not realize that we have not mysteriously turned into hypochondriacs or whiners, that we do not know why our problems are going on and on and on, but we wish as fervently as they do that the problems would stop. As a forum member said, one of the enormous benefits of this forum is that you always can count on several sympathetic ears when you just need to vent. We do not ever need to fear what some of us have experienced in our everyday lives, when we start to say something about our highly vexing problem, and we see the listener's eyes glaze over and can almost hear the person thinking, "Oh, here we go again!"

Another way in which the forum is highly valuable is in making us realize that we are not alone. I think you were right; if the word "neuropathy" in the subject header of your poll question had been something else, I bet that even more people would have said, "Yes, I have had those weird symptoms, too."

As for me, just when I think I have looked backward and finally understood every odd aspect to my body and its functioning in the last 13 years, I read a comment that makes me say, "Oh, gosh, I see myself in that!" This was my reaction when I read what you said about your face sagging. My has been not as noticeable as yours, but starting several years ago--about the time all the very sneaky symptoms of hypothyroidism began to develop--I noticed that in photographs, the left side of my face is sagging a bit. I can only see it in photographs, but I have seen it over and over, and it is really unmistakable.

It is so strange to me that some of us have symptoms that seem like a central nervous system problem, only to find that our nervous system is perfectly healthy and our thyroid gland is to blame. I do not begin to understand the underlying mechanics.

I am so glad that the other "neuro symptoms specialist"--Leanne--and I have been able to be a comfort to you. It was our goal, I know. Because my work promises to put heavy demands on my attention for the rest of September, I may be an infrequent visitor to the forum, but I will keep an eye out for an update from you. No matter how busy I am, you will be very much in my thoughts and prayers.

Sending you another e-hug,
Jenny

[DLA]

We must have been posting yesterday at same time b/c I didn't see the DLA/DAC post.  That's okay.  DLA is screen name.  My initials. Wan't that original?  Dac, is my name.  Well, part of it any way.  Is all I put on here.  It's really unusual and don't like posting it with all my info.  Would be too easy to track me down!   LOL

Am going to endo tomorrow, so will know more then and let you know.  Thanks for asking.

Dac

[msfergy]

Leann where have you been and how are things going?

[msfergy]

Hello Jenny and all, just thought I would drop in and say hello and how is everyone doing? Any new news yet? Hashimoto-Newbee-Drick have not heard from you and Leann..........

[LJ39]

I am still here.Busy getting my kid's settled into school.   My youngest starting kindergarten.   I am still not feeling well.  I have just seen my G.P. and she is sending me to an internest and rhema tologist and I took it upon myself to make another appointment to see my neuro,I have many questions I need to ask.  I really believe I am  suffering from peripheral neuropathy which was triggered from thyroid problems.  I want to find out more info about treatment options if there is any or if it is just a waiting game.  In the mean time I have started to go to a counsellor to help me with my anxiety issues.  She is amazing she is teaching me some tools to help me cope better mentally,until I start feelling better physiscally.  I have also signed up for yoga again and going to start exercising again.  I really do not feel llike it ,but I am going to force myself to do it.  My counsellor say's I cannot treat my body like it is glass,and I have to start to get stronger  physically.  Who knows maybe it will help with these sensory problems.  I use to excersise allot ,it was a big part of my life but everything has come to a hault since getting sick.  I have to start living as normal of a life as I can and try not to  focus too much on how I am feeling.  I will probiably not be on this site as much anymore.  I find If I get too fixated on my illness I get very anxious,I know that the thyroid really causes allot of anxiety and depression in many of us.  It is really a horrible disorder.


I tend to get too negative at times ...thinking that I am going to die of some incurable illness, cancer,or disabled by MS.  My mind starts to go and I get myself all worked up.  Not fair to my family.  This whole illness is taking valuable time away from my kids and husband .  I really resent that.  I hope that over the next few months I  will find the answers that I am looking for, but if I do not I have to find a way to keep on going and try to be positive.  Take care ,I will be in touch now and then.

Leanne  

[msfergy]

Leanne, I understand and been thinking the saome way. I am going to start going to a gym, i know i can fight this pain if i try although i am going to have surgery and i guess that needs to come first. I hope all turns out well for you to, I have been thinkng of yoga also, i do mind meditation before bed at night and it helps me go to sleep. This has put a big halt on my family as well and it isnt fair to them and i know, i try not to say much anymore because i know for 9 months now i have drove them crazy with me. I was just checking out this neat foot machine on the net, thinking about ordering it but it is 400.00 but if it works then thats great, it has electric pads u can put on your body anywhere and it circulates the blood flow and helps heal nerves, i thought i had a shortcut on my desktop but it took me back to here so i will have to find it. Hope all goes well for you and please keep me updated.
Take care
Tina

[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.

[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

[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

[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.

[ChitChatNine]

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

C~

[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

[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 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...

[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!!!

[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

[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

[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

[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]

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...