please...can someone help!! so sick with neuropathies.I really need help.

[LJ39]

Hi I am a 39 year old female diagnosed with a large hot toxic nodule on my right lobe a year and a half ago.I have had a nodule on my thyroid for about seven years,but at the time it was not affecting my thyroid function,or causing me to have any symptoms.then  two years ago I started to get severe heart palpitations.My GP sent me to endo,did iodine uptake test,came back hot toxic nodule with suppression of rest of gland. I was treated with a high dose of 131 therapy (which I think i rushed into) I just wanted heart palp's to be gone.I was so scared,I have heart problems in family.had major pvc's shortly after therapy,had to go to hospital and edno put me on beta blockers.Two months after treat,started getting tingling in right hand and right foot pins and needle feeling,then within a few days feelings were throughout body from face to feet burning sensations numbness,dizziness,and all kinds of weird paresthesias. swollen tongue tingling in mouth back of neck throbbing pain.I did not know what was wrong with me .I called my endo right away,she said it was anxiety and prescribed paxil I did not take it.then it kept persisting and I kept calling her pretty much hysterical.she then changed her opinion and said it was probably connected to thyroid adjusting to new levels and my tissue needs to heal.I needed to patient and give it time.symptoms persisted went to gp she game me ativan then klonopin it helpd dull the pain.months go by ...still very ill,endo say;s now that these neuropathies have nothing to do with thyroid because tsh is now normal at 4.27 t412 and t3 at 3.9 I know these are not normal and that they are sub clinical hypo.she sent she is done with me and that I should see a really good neurologist!! I begged her to give me a trial of synthroid she absolutely refused.I went back to gp she put me on synthroid 25 mg was on it for a month it felt no better.went to neurologist had every neuro test done clean mri except for bulging disc at c5 c6 level. eeg vep every blood test done for vitamin  and autoimmune disorders all normal  results.I have myself convinced that I have ms,and am very upset I have two little boys and a husband and my quality of life has suffered greaty I use to be a positive fun loving upbeat person,I am now a depressed sick ,confused,scared to death person.I don't know what to do.My neurologist said these neuropathies would more than likely go away over time,yet he has no idea what they are caused from.He does not think it is ms.He is a ms specialist,and professor .it has been 6 months now still sick nothing has changed I went to a natureopath he said he sees these symptoms with hypothyroid all  the time.he put me on armour have been on lowest dose for 2 months my numbers are now normal but still have all symptoms.I am so confused as to what to do.I am trying to get myself off klonopin slowly which seems to be increasing my symptoms intensity.but I do not want to stay on that addicting drug.so now it is a wait and see approach. and I am suffering.I have gone for second opinion with endo he said has nothing to do with thyroid,but that I should be watched for hypothyroid setting in down the road.He said to see a neuro also.I think I will get a third opinion I am going to gp today,because I am at my witts end I need to know what is wrong with me.these are what my thyroid lab numbers have looked like over the past 2 years

before I had 131 treat
tsh .o1 t4 20 t3 6.2
after 131
tsh 4.27 t4 12 t3 3.9
tsh 6.59 t4 18 t3 4.3
tsh 4.o6 t4 16 t3 4.1
tsh3.o7 t4 18 t3 4.4
tsh 2.81 t4 16 t3 4.7

then I started synthroid
levels went down to 2.51 t4 18 t3 4.4
then I stated Armour because naturopath said synthroid was **** my hair was falling out in handfuls
levels are now tsh .81 t4 16 t3 6.7
still feel horrible and waiting for new blood test results.started to get heart palps so cut down armour.
Is there a Doctor or anyone that has any advice or opinion on my situation?I would really appreciate it.Was I hypothyroid will it just take time for my body to recover? should I even be on thyroid med? are my symptoms unrelated to thyroid ? even though they all started right after treatment? sorry for such long post ,I am so desperate to be healthy again I am tired of crying every day and feeling helpless.

  thank you    

[rohit_786]

B12 Sub lingual is available in whole food store . Make sure you try Methylcobolium . I suggest before you try it have internist test B12 level /Homocysteine level and Methyl Melonic acid (MMA) which uses to rule B12 deficiency as if you started your own you will not find that you have deficiency . Here is the link in different forum which talks about B12 deficiency  in more detail.

http://forums.wrongdiagnosis.com/showthread.php?t=9948

Good Luck.

[LJ39]

Do I need to ask my Doctor for the subllingual methylcobolium b12 or can I get it at the health store?
Interested in trying anything that might help.thanx

Leanne

[rohit_786]

I used to have tingling /numbness pretty much every day specially i notice when i sit on my computer chair where my legs hanging down i feel tingling in my feet and fingers.
I still have tingling/burning sensation specially when i am very tired , in the night i notice pretty much every day my arms fall sleep .
Doctor said i have to wait till my TSH drop down to 1.0, i am hanging there !.

My internist tried series of B12 injections (1000mcg ) 1/day for 7 days , 1x4/month, since after that i was talking b12 sublingual Methylcobolium.

Last month my B12 level was 7500 which is way above what normal level is , so that rule out pretty much pernicious anemia  now i am not taking any sub lingual . I did notice any difference before and after taking b12 only time i feel difference when my TSH level drop down .

Good luck and hope our doctors listen to us.

[DLA]

Went to see my endo Thursday and told her I was taking sublingual B-12.  She said that they were very good in treating neuropathies.  Told me I should start noticing a difference very soon.  Would be worth a try.  You can not od on B-12 b/c whatever your body does not needs it just excreets.

Good luck and hope you get some relief soon.
Dac  

[LJ39]

Hi there
Very interesting that you also have had the same symptoms as I have had.  I find it so unbelievable that so many of us have been sent to a neurologist for our symptoms,when it seems that they are all related to our thyroid conditon.  I can not understand why doctors do not see the connection between the neurological symptoms and our thyroid disorders.  Very odd.  I am starting to think that these sensory symptoms are something that I will always have to live with.  Do you have the tingling numbness everyday?? if not, how long did it take before they started to improve?

LJ39

[rohit_786]

Before i diagnosed Hypo/Hashi i had tingling in my feet and also have muscles weakness . I went to neurologist he  did Nerve conduction test but didn't find anything  and finally did another serious of blood test which shows my tsh was 12.13 so must that is related to Thyroid . Even now my TSH is 2.9 but i still have tingling in my arms and fee and also burning sensation in my feet which is not as bad as before but still there . Yes i also  have muscles weakness /headache and bit tired also.

[msfergy]

Leanne, so are you doing better on armour? I dont know if I ever asked you that.

[LJ39]

Been away on holiday's.Thank for your response.You are right All this stuff happened after the Rai treatment there has to be a connection.But when you feel so sick everyday you start to think the worst.I know that stress is so harmful for our bodies, especially for recovery.I have to try to be positive,and not think the worst.I just want to feel normal,and not wake up every morning feeling sick.Thank's for listening...OH yeah my palp's have really subsided now that hyperthyroidism is under control ,thank God!! that was really scary.I still get them the odd time,but not like before.

talk to you soon ,take care

LJ39 Leanne  

[Newbee2000]

One more thought, lots of posters say they need to get tsh down to 1 to feel better, and then the change isn't instant, it takes a some time at 1 to feel better. My tsh isn't down to 1 yet, so I'm only telling you what I've read/been told by others. Tingling/parethesias can be caused by thyroid, especially hypothyroid. I also wondered if I had MS due to tingling, but MS has lot of other symptoms and often specific visual symptoms, so don't jump to conclusions that will only bring you stress. You already know you have thyroid issues, that is the more obvious cause.  FYI, I also had bad heart palps. They have improved after a months on synthroid, but still get them in bed sometimes. -- You can also post to the MD in the Doctor-to-Patient forum on this board. He's very helpful!! -- I know it's difficult to find the right MD, but it's worth looking for one. --take care!

[Newbee2000]

No, my muscles haven't felt weak, but they did ache a bit especially in the morning, mostly in my upper arms. That symptom stopped shortly after I starteed synthroid. I din't have TT, I have hashi/hypo, but my tsh was high!!!  I also have carpal tunnel in my hands/wrists from the hashi/hypo. That's only gotten slightly better, and it acts up at night, my hands/wrists get numb and/or fall asleep, even while I'm sleeping!!! I've READ that hypo can cause carpal tunnel. --My tingling also began in my feet and then developed in other parts of my body, especially the left side of my back. My body isn't really tingling much now, but it's taken about 4 or 5 months on synthroid for that to improve. My feet still tingle, but not quite as badly as in the beginning. I have a few other hypo symptoms too, including some slight short term memory problems. I KNOW it's all from the hypo/hashi. It all started around the same time and NOTHING else is wrong with me!!! It is frustrating that a lot of Endo. won't/don't immediately link the symptoms to the obvious cause, the thyroid!!!  FYI, I also had an adverse reaction to the GENERIC version of thyroxine (levothyroxine). I had nausea, burning skin and diarrhea every time I took the generic. I'm fine on Synthroid, but still waiting to feel like myself again. It seems to take a long time. Good Luck!!

[LJ39]

have heard the same thing about tingling.interesting you started getting it in your feet that is where mine started ,then in one hand.then all over especially behind neck arms legs.so strange..I guess the tingling and numbness take time to go away. my nose is even numb right now and tongue even get swollen and tingling don't know if it is from anxiety medication or thyroid symptoms !! I would like to know why endo doc's don't explain possible side effects of going hypo after rai treat they do not tell you anything my muscles feel a little weak sometimes too did you have that?

thank's for the input

Leanne

[Newbee2000]

For what it's worth, I started to experience tingling in my feet and sometimes in my body, especailly my back just before I was diagnosed w/ hashi/hypo. Primary care MD didn't know what the cause was. I was sent for back exam and films, no back/disc problem, so I was sent to Endo who has been vague at best about diagnosing the tingling, he THINKS it is probably from thyroid. My tsh is much lower now and I definitely notice less tingling, though it is still there.  I don't have any anxiety!! In my opinion/experience, thyroid can cause tingling. I've read other posters here stating the same.  Good luck! Hope you feel better soon!!!

[LJ39]

I think you are right about antianxiety med's I cry all the time and I think they make my symptoms worse ,especially when coming off them.Really really bad! but they seem to dull the pain a bit they calm your central nervous system for a while  any way.I got my Doc to give me elavil 10 mg very low dose ,it is a anti depressant but at very low doses it relieves nerve pain.It is sitting in my cupboard,I really hate taking medication.I use to not even take tylenol.the problem  is I have these symptoms all bloody day every day and I need something for the pain.I do not know if you have kid's but I need to be able to function to care for them.I will try to take Tylenol pm see if it helps me.I have had blood suger tested.I have had pretty much every blood test done including ANA test lupus lyme etc...Pigovitz have you heard ,or do you know how long after thyroid blood levels are stable ,that these types of symptoms take to go away?? I want to try to get on doctor;s forum to ask but always full.Oh by the way I have mitral valve leak which i discovered through this whole horrible journey,which I have heard is very common with people with hyperthyroidism...GREAT !!!  have you had neuropathies Too?

thank;s for you advice

Leanne

[pjgovitz]

Just a little ...fyi...I will never go to a PA again...did I say Never...LOL....The first one misdiagnised and undermedicated me for years....the second nearly killed me by putting me on 250 synthroid, after he had me really really sick, my heart was even enlarged from too much meds...he admitted he didn't understand thyroid labs UGH!!!!  Sent to an Endo!!..but LJ yourendo doesn't sound much brighter sorry, It takes up to a year or more for our bodies to heal after being hyper or hypo..after are levels are corrected. Your tSH was quite a bit higher after your treatment then before, so I believe it could definitely be atributing to your pain, also I cannot take anti-anxiety meds they make my thyroid symptoms worse, and weaning off them excaberates the symptoms.  , XANAX makes me hurt bad, tingle bad, have chest pain, it swells my muscles, and gives me hyper symptoms, and I cry alot when I was put on it. Now I take 1/2 of tylenol pm, for me it works better than the other stuff. Also have you had your blood sugar tested?
Pam

[LJ39]

since having rai done my nodule on thyroid has pretty much disappeared.I was diagnosed with having a toxic nodule not graves,so from what doctor;s tell me people treated for just toxic nodule have less of a chance of putting you into hypothyroid state after rai treat.I know what you mean about my whole thyroid not being destroyed,but They did give me a very high dose of 131 so the therapy would work the first time by completely getting rid of nodule,which it did.Very interesting that you mentioned seeing a osteopathy I was just looking up that type of Dr on internet,and was thinking of seeing one,I do not know how to go about seeing a P.A. but I can certainly find out.What kind of thyroid disorder do you have?

thank you for sending your prayers my way. that really means allot to me.I have been praying every day  usually many times throughout the day that I will heal and get better.I just want my old life back  and to feel normal.

Thank's for listening Dac

LJ39

[DLA]

The 131 did not wipe out your thyroid completely or you would have gone hypo much faster and your numbers would have been WAY high and you would have either thought you were dying or been begging to after all that time.  Sounds like to me they only gave you enough to try destroy enough of your thyroid to do away with the Graves'.  That is where the problem comes in keeping your levels controlled.  When what you have left is some damaged thyroid it will release different levels of hormone so dosage constantly have to be changed.  

Since I don't believe there is any way that they destroyed your thyroid then your nodule will still be there.  Unless I miss my mark they were trying to shrink it, but this is usually not a permanent fix and I don't know why they would think it was.  Think you should fight to have an ultra sound done to see what is left there.  Only way you're going to know for sure.  Okay, reread part of your post and see you do know that nodule is still there.  You NEED to find out what it is doing now.

As I said you are having thyroid symptoms again and need to deal with them post haste.  Drs annoy the cr@p out of me!!  Any time your thyroid levels are off it is doing damage to your body.  Being hypo does an extraordinary amount of damage.  So needs to be taken care of as soon as possible.  Believe me when I tell you I lived in hypo state for many yrs and am going through a lot trying to wait and help the damaged parts of my body, most of it, to recover.

D.O.--doctor of osteopathy
P.A.--physician's assistant

They can both do everything an MD can do.  A D.O. is just another kind of dr, while a PA is someone who works under a dr and has to write scripts and tests under the drs name.  As I said, neither of them usually have the drs know-it-all attitude.

Please find another dr before the counseling.  Anxiety and chronic pain are also symptoms of hypo.  No matter what they tell you if you have a large nodule growing on your thyroid it is causing problems!!!!  Why don't they get this?!  Do you think if you went in with this nodule growing on another organ they would just ignore it?  Don't really think so.  Think you would have been sent straight to surgeon.  Do not pass GO.  Do not collect $200.  Not griping at you, get so totally mad about this I cannot see straight!

Keep fighting and am saying a prayer for strength and guidance for you!
Dac

[LJ39]

thank you so much for your advice.what type of thyroid disorder do you have ? and how long after your thyroid levels were stabilized did it take for you to feel normal? hope you do not mind me asking.I have heard that it can take a year or more after having Rai 131 treat done.but I do not know anyone else that has ever had radioiodine treat done.

LJ39  

[kitcurious]

It seems you already have seen your doc today so disregard the suggestion.

[kitcurious]

Agree with everything Dac said. I was diagnosed by accident by a doctor I saw for something else.
I never had any idea my thyroid was a problem at all.  I have no idea about the I31 treatment
and can't comment on that.

Also...Beta blockers can make you dizzy. Check the list of side effects for them, there are many.  Common ones are: Drowsiness or fatigue, cold hands and feet, weakness or dizziness,
dry mouth, eyes, and skin.
  NEVER stop taking them on your own without the doctor's instructions on how to go about it.

If you lower your TSH too much you'll become hyperthyroid and then you may have arrhythmias. If your heart is not structurally sound this puts you at risk for arrhythmia.
Interestingly, hyperthyroid people are put on beta blockers.


It almost seems like you need to wipe the slate clean and start over with an Internist doing  testing and then sending you to a good endocrinologist, as well perhaps some other specialists as the results indicate. You need your docs working together though.

If it is your thyroid, you do need to give the meds time to stabilize your levels, and after being stabilized, it can take quite a number of months to begin to heal.

[LJ39]

Thank you so much for your response.I just got back from my doctor and she wants me to talk to a  counselor about my anxiety regarding my chronic pain to try to  help me cope better.I guess it can't hurt.Oh in regards to my nodule on my thyroid they diagnosed me with hyperthyroid  and then basically fried my thyroid with radio active iodine treatment that is how they dealt with my hyperthyroidism.By the way what is a DO or PA I hope I don't sound stupid for asking.I know what you mean by having to be an advocate for your own health I have fought for every test and every referral every step of the way.I asked my doc today about another referral for a endo and she thinks that her and I should just monitor my thyroid  situation.She thinks they will just say the same thing about there being no relationship between symptoms and numbers.my tsh is now 1.18 t4 16 t3 4.4 .I did not know about waiting six weeks to do blood work .thank you for the tip.have made me feel allot better just knowing that I am not going insane!!  thank you  LJ

[DLA]

Welcome aboard.  Sorry you are having all these problems and feel so bad.  Reread your post twice and I don't ever see where your hot toxic nodule was completely dealt with.  If thyroid was completely dead you would have had onset of hypo symptoms and numbers within a very short time.  Your numbers do sound good, but the one thing most drs don't consider is that numbers are not the only thing to be considered.  Have never had nodule or anything like that, but know from reading posts on here that anything ON the thyroid can and usually does cause symptoms one way or the other.  But usually hypo.  

Unfortuneately drs in all fiels don't want to dx it on anything but the numbers.  Okay, so you obviously have tried all other possibilities of what could be wrong with you and spent your life savings on it to boot.  So what I am about to say is going to sound crazy to you I am sure.  If it was me I would go to a DO or a PA.  They are not MD's, and they are not specialists.  They are however the ones who usually listen the most and take the matters more seriously.  They don't have their head stuck up their rear end saying it is so b/c they said so.  Then you will probably need another referral to another endo.  When looking for an endo make sure that they deal with A LOT of thyroid patients and not just diabetics.  Or there are drs who only deal with thyroid disorders.  Try to find one of these.

Oh, something else.  When you start a thyroid med or change a dose you have to wait a minimum of 6 weeks before being tested again.  It takes that long to get regulated in your body.

Good luck and let us know if there is any more help or support that you need.  We are always here.
Dac

You are not crazy, this is a very common problem.  To be a thyroid patient you have to be your own advocate and learn to fight continuously for what you get.  Most of us don't get dx and treated until we have seen many drs and until we quit feeling crazy and get REALLY mad.  It is a sad fact, but very true.