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Hi Everyone,

I'm a 36 year old Canadian, married with two wonderful young sons. I've been sick since May of 2012 (actually really since the Fall of 2011). I was finally told by my Neurologist in November of 2012 that my blood test (Anti TPO Antibodies) was abnormal which means that I have either Hashimoto's Disease or Graves Disease.

Anyway, here's my story from the beginning...
I started having chest pains and palpitations in the Fall of 2011. I would also get this strange sensation travelling up my neck. My doctor sent me to a cardiologist. The cardiologist found that my heart rate was too high, but other than that all my other tests came back normal. The Cardiologist thought that maybe my heart rate was too high because of the Amitriptyline I was on for migraines (that I'd had since my first son was born), so he took me off that medication.

Then in May of 2012, I became sick with vertigo. This lasted for about 1-1/2 to 2 weeks. I was unable to even get off the couch. Then I started to get blurry vision in one eye. Then severe pain in my neck, torso, and legs (which I later learned was called peripheral neuropathy or polyneuropathy). I also developed muscle twitching in my legs. You could actually see the muscles twitching in my legs. Parts of my body would go numb and/or pins and needles. I thought at this point that I had MS. I was sent to a Neurologist that did an MRI of my brain and spine. It was negative. I was actually suicidal at this point from the pain. It was the lowest point of my life.

During the summer of 2012, the pain eased off a bit but did not disapear completely. I developed a slight jerk of an arm or leg when I was trying to fall asleep and this made it almost impossible to sleep. Therefore I would go for days and days without sleeping. At this point I started an Unemployment claim and went off work.

In October 2012, my Neurologist started me on Lyrica (for the neuropathy) and Topamax (for the limb jerking). Both those medications have helped me immensely with pain and insomnia. From what I've read about thyroid conditions, neurological problems are rather rare, but I have noticed a few people suffering with neuropathy here so I hope to connect with them.

Then in November of 2012, I started having falls. My left leg was just so weak. It would just give out for no reason. So I bought myself a cane and physio at my doctor's office showed me how to use it. Then the muscle in my right leg start to give me severe pain, so really I was unable to walk. This is when my Neurologist finally found something wrong with my blood work and told me about my thyroid.

Since November I've lost 35 pounds. I started out trying to lose the weight but since then I've just lost my appetite, then I've just became too sick to eat. In the last three weeks I've been really sick. I've spent three days pretty much just sleeping. I've been so weak. I've had chest pain from hell almost every day. Some days, I'm so weak that I just collapse and can't get up again. I have nausea all of the time and a couple days this week, I was even spitting up blood. What the hell is wrong with me? I have severe collar bone pain and neck pain on the right side. I have an ultrasound of my thyroid this Thursday.

In Canada, our test results take about a week to come back and we don't really have access to our results. We can ask our doctor but they don't usually like to pass them over to us. My Neurologist did write down the Anti TPO result for me so I'll include it here. (Normal: <35 Mine: 91). I have to call today to find out my blood work results from last week and it's just done over the phone. This whole thing has been so stressful. I'm trying to get back to work this week (my manager has been excellent through all this), if I don't my husband and I will have to claim bankrupsy.
 

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Robyn, welcome. Sorry you're having a pretty rough time right now. We have some very knowledgeable people here who will be along to share their insights.

:hugs:
 

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Robyn said:
Hi Everyone,

I'm a 36 year old Canadian, married with two wonderful young sons. I've been sick since May of 2012 (actually really since the Fall of 2011). I was finally told by my Neurologist in November of 2012 that my blood test (Anti TPO Antibodies) was abnormal which means that I have either Hashimoto's Disease or Graves Disease.

Anyway, here's my story from the beginning...
I started having chest pains and palpitations in the Fall of 2011. I would also get this strange sensation travelling up my neck. My doctor sent me to a cardiologist. The cardiologist found that my heart rate was too high, but other than that all my other tests came back normal. The Cardiologist thought that maybe my heart rate was too high because of the Amitriptyline I was on for migraines (that I'd had since my first son was born), so he took me off that medication.

Then in May of 2012, I became sick with vertigo. This lasted for about 1-1/2 to 2 weeks. I was unable to even get off the couch. Then I started to get blurry vision in one eye. Then severe pain in my neck, torso, and legs (which I later learned was called peripheral neuropathy or polyneuropathy). I also developed muscle twitching in my legs. You could actually see the muscles twitching in my legs. Parts of my body would go numb and/or pins and needles. I thought at this point that I had MS. I was sent to a Neurologist that did an MRI of my brain and spine. It was negative. I was actually suicidal at this point from the pain. It was the lowest point of my life.

During the summer of 2012, the pain eased off a bit but did not disapear completely. I developed a slight jerk of an arm or leg when I was trying to fall asleep and this made it almost impossible to sleep. Therefore I would go for days and days without sleeping. At this point I started an Unemployment claim and went off work.

In October 2012, my Neurologist started me on Lyrica (for the neuropathy) and Topamax (for the limb jerking). Both those medications have helped me immensely with pain and insomnia. From what I've read about thyroid conditions, neurological problems are rather rare, but I have noticed a few people suffering with neuropathy here so I hope to connect with them.

Then in November of 2012, I started having falls. My left leg was just so weak. It would just give out for no reason. So I bought myself a cane and physio at my doctor's office showed me how to use it. Then the muscle in my right leg start to give me severe pain, so really I was unable to walk. This is when my Neurologist finally found something wrong with my blood work and told me about my thyroid.

Since November I've lost 35 pounds. I started out trying to lose the weight but since then I've just lost my appetite, then I've just became too sick to eat. In the last three weeks I've been really sick. I've spent three days pretty much just sleeping. I've been so weak. I've had chest pain from hell almost every day. Some days, I'm so weak that I just collapse and can't get up again. I have nausea all of the time and a couple days this week, I was even spitting up blood. What the hell is wrong with me? I have severe collar bone pain and neck pain on the right side. I have an ultrasound of my thyroid this Thursday.

In Canada, our test results take about a week to come back and we don't really have access to our results. We can ask our doctor but they don't usually like to pass them over to us. My Neurologist did write down the Anti TPO result for me so I'll include it here. (Normal: <35 Mine: 91). I have to call today to find out my blood work results from last week and it's just done over the phone. This whole thing has been so stressful. I'm trying to get back to work this week (my manager has been excellent through all this), if I don't my husband and I will have to claim bankrupsy.


It does sound to me like you are hyperthyroid and believe me, that can cause all the symptoms you describe and much more; especially if you have Graves'.

The criteria for Graves' is clinical. You must exhibit..........goiter, exophthalmos, pretibial myxedema and thyrotoxicosis as per Dr. Robert Graves' of the 1800 era. 3 out of the 4 qualify.
(3 chapters) http://www.thyroidmanager.org/chapter/graves-disease-and-the-manifestations-of-thyrotoxicosis/

http://www.thyroidmanager.org/chapter/diagnosis-and-treatment-of-graves-disease/

Otherwise you are classified as hyperthyroid either because of Hashi's, the criteria for that being high TPO Ab and a grapelike appearance of the thyroid, both of which are "suggestive" because this is commonly seen in Hashi's with FNA (fine needle aspiration) confirming those suspicions "if" there are Hurthle Cells indigenous to Hashimoto's. Or because of cancer. We don't know which comes first, the hyperthyroid or the cancer. We just know that they are often found together.

You do need to be checked for cancer. High TPO is "suggestive" of many things and one of them is cancer. Also your doc should run the following tests that you have not had.

http://www.labtestsonline.org/

TPO Ab
Mild to moderately elevated levels of thyroid antibodies may be found in a variety of thyroid and autoimmune disorders, such as thyroid cancer, Type 1 diabetes, rheumatoid arthritis, pernicious anemia, and autoimmune collagen vascular diseases. Significantly increased concentrations most frequently indicate thyroid autoimmune diseases such as Hashimoto thyroiditis and Graves disease.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.

Negative test results means that the autoantibodies are not present in the blood at the time of testing and may indicate that symptoms are due to a cause other than autoimmune. However, a certain percentage of people who have autoimmune thyroid disease do not have autoantibodies. If it is suspected that the autoantibodies may develop over time, as may happen with some autoimmune disorders, then repeat testing may be done at a later date.

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

We are not the same but I did have myoclonic seizures w/Graves' so you will want to consider that with the "jerking" you have described. Lupus also causes myoclonic seizures.
 

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Discussion Starter · #4 ·
Oh my gosh, I am so glad I posted my story here. Thank you Andros for all the information!
Right now, I can't really get my family doctor to take me seriously. He only wants to run the TSH blood work and if that's normal, he says I'm fine. Same with the Rheumatologist. The Neurologist is the one that did the Anti TPO blood work twice for me and both times, it was abnormal. I can't get back in to see him though for three months. The receptionist is hard to get past... and she won't fax the abnormal blood work to the Rheumatologist, I've asked her three times now! I NEED a referral to an endocrinologist but I can't convince a doctor to give me one. The Rheum. said he'd do it urgently but only if his blood work came back abnormal (but he only did the TSH). The family doctor said he'd do it but not urgently. He said it may take months or even a year to get in. Maybe my ultrasound will show something and that will get my an appointment.
 

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Robyn said:
Oh my gosh, I am so glad I posted my story here. Thank you Andros for all the information!
Right now, I can't really get my family doctor to take me seriously. He only wants to run the TSH blood work and if that's normal, he says I'm fine. Same with the Rheumatologist. The Neurologist is the one that did the Anti TPO blood work twice for me and both times, it was abnormal. I can't get back in to see him though for three months. The receptionist is hard to get past... and she won't fax the abnormal blood work to the Rheumatologist, I've asked her three times now! I NEED a referral to an endocrinologist but I can't convince a doctor to give me one. The Rheum. said he'd do it urgently but only if his blood work came back abnormal (but he only did the TSH). The family doctor said he'd do it but not urgently. He said it may take months or even a year to get in. Maybe my ultrasound will show something and that will get my an appointment.
Do you have the ultra-sound set up?

I am putting info for hyper and hypo here since you do not yet have a diagnosis.

Read through; I'll bet it rings some bells!

Myopathy from hyper.
http://www.medicalonly.com/2007/07/27/thyrotoxicmyopathy_hyperthyroidism

Myopathy from hypo
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1010480/

peripheral neuropathy
http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

http://www.suite101.com/content/thyroid-disease-and-neuropathy-symptoms-a140669
 

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Discussion Starter · #6 ·
That first link you sent me... OMG! OMG! I just forwarded it to my husband at work. That's what happened to me over the last couple weeks. I thought I was getting Myasthenia Gravis or something. I came home from work and literally crumpled on the floor. My husband had to drag me to bed. Then a couple days later, I came downstairs from a nap and crumpled on the stairs and was 'stuck' lying there for 45 minutes! I was just too weak too move... I actually felt paralyzed. This is why I'm unable to work. You are honestly a life saver Andros! I felt like I was losing my mind... and to be able to show my husband, thank you! I know he believes me but I always wonder if in the back of his mind, you know.. does he think 'why doesn't she just get up' or something? This has been hell on earth and to have someone understand is amazing. How on earth am I going to get my doctor to understand this though. I try to talk to him about this and I can tell he tunes out after a while and he doesn't really read what I show him. I know he doesn't have the time as he has a lot of other patients to see, and I don't want to be disrespectful by showing him up with my knowledge, so how do you handle it. Doctors hate to hear that you've been on the internet researching. I am strongly considering going back to my old family doctor but it's quite a drive. Yes, I do have an ultrasound for this Thursday. Thanks again!
 

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Robyn said:
That first link you sent me... OMG! OMG! I just forwarded it to my husband at work. That's what happened to me over the last couple weeks. I thought I was getting Myasthenia Gravis or something. I came home from work and literally crumpled on the floor. My husband had to drag me to bed. Then a couple days later, I came downstairs from a nap and crumpled on the stairs and was 'stuck' lying there for 45 minutes! I was just too weak too move... I actually felt paralyzed. This is why I'm unable to work. You are honestly a life saver Andros! I felt like I was losing my mind... and to be able to show my husband, thank you! I know he believes me but I always wonder if in the back of his mind, you know.. does he think 'why doesn't she just get up' or something? This has been hell on earth and to have someone understand is amazing. How on earth am I going to get my doctor to understand this though. I try to talk to him about this and I can tell he tunes out after a while and he doesn't really read what I show him. I know he doesn't have the time as he has a lot of other patients to see, and I don't want to be disrespectful by showing him up with my knowledge, so how do you handle it. Doctors hate to hear that you've been on the internet researching. I am strongly considering going back to my old family doctor but it's quite a drive. Yes, I do have an ultrasound for this Thursday. Thanks again!
All my inner organs prolapsed. Yes, they sure did. And I could not walk up one single step.

Methinks you and hubby have to find you a NEW doctor; one who "gets it!"

You are in dire straits and you do need medical intervention.
 

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It's a shame that in countries with national healthcare systems all the "power" is given to the doctors, and the patients seem to be left powerless in their search for a diagnosis. But I digress...

One thing that comes to mind is this...if you do not have the strength to move and you're lying crumpled on the floor, is that not enough reason to call an ambulance or be taken to the nearest emergency room, where somebody WILL listen to you and test you more thoroughly?
 

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Discussion Starter · #9 ·
I have called an ambulance numerous times (and/or have had my husband drive me to the neighbouring city hospitals)... in the beginning they would shrug it off as migraines, then as anxiety. Then when they heard that a Neurologist was following me, they would just send me home, and tell me to follow up with the Neurologsit then.

Okay here's my most recent dilema... I work at the local ER (in our small town where they employ the family physicians to run the ER when they are not in their offices, therefore I work with my family doctor). I am a registration clerk, or at least I'm trying to be but I'm too sick to work (I'm going to try to work a modified shift again this Wednesday night - a half shift). Anyway, our local hospital is so tiny and run down and does not have the resources to care for any complicated cases. The doctors simply do not have the knowledge to care for complicated cases. The ambulance attendants are not allowed to travel out of bounds into the hospitals where my specialists are, therefore if I can not travel by car, I'm kind of screwed. So, my last ER visit, two weeks ago, the doctor treated me for a migraine, when I was having severe weakness in my chest, trouble breathing, and severe pain in my neck and right eye. (My husband even said I went as white as a sheet and my eyes rolled back.) The doctor sent me home with pain medication. I was hoping she would call the neighbouring city (where my specialists are) for a consult and transfer me for admission.
 

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Dang... honestly, what's a patient to do?

So...if it happens again, can your husband drive you to the bigger hospital?
 

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Discussion Starter · #11 ·
My husband is supportive, but we've been through it all now. And we have young kids at home. We've called his mom out so many times to help with the kids. So now I think it's expected of me to get through these 'attacks' on my own (tears here now). I know my husband loves me... I guess this is where you guys come in. I feel the weakness coming on. It feels like warm soup coming up my chest and I know it's going to happen and I'm just too weak to function. It usually happens at night when I can't sleep. Then sometimes I just get so short of breath that I worry I may die and I just try and lie so still so that I can breath. I can't keep bothering him and my mother-in-law. I can't get in the car anyway, because I honestly feel like I can't move. Even if I could, these doctors... honestly (even the ones in the proper city) they just want to pass you off to someone else, no one seems to want to deal with you. I'm not just saying that.. it is that way. I think it's the family doctor that needs to take responsibility in this country and unless you have one that cares, you're really screwed. I used to have an excellent family doctor. I think it's time to see if I can get back into him (I may not be able to though. Or maybe I can as the rest of my husband's family is still seeing him.) Sometimes I feel as though this thing is going to kill me... my Dad and Mom (not my husband) think I'm being over dramatic when I say that, but in my heart, I don't feel like I am. I know how I feel, and honestly, I feel like one day this may just take my life. I can't keep fighting it.. esp. if I can't get the medical help that I need.
 

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Dear Robyn....I am in tears reading about your situation. I am praying for you.

As I have received help from the good people here, too, I have become stronger in presenting my difficulties with my thyroid to others....and become a better advocate for myself.

You also need to present your case to others and your husband without concern about what they/he thinks and tell them/him you need their help. Your husband needs to better understand how bad things are and that you believe you may not survive if the two of you don't put your heads together and find help.

I will keep praying for you....and please keep us informed.
 

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It sounds like going back to your previous family doctor might be your best bet for now. Please request a FULL thyroid panel, including thyroid antibodies.
 

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Robyn said:
I have called an ambulance numerous times (and/or have had my husband drive me to the neighbouring city hospitals)... in the beginning they would shrug it off as migraines, then as anxiety. Then when they heard that a Neurologist was following me, they would just send me home, and tell me to follow up with the Neurologsit then.

Okay here's my most recent dilema... I work at the local ER (in our small town where they employ the family physicians to run the ER when they are not in their offices, therefore I work with my family doctor). I am a registration clerk, or at least I'm trying to be but I'm too sick to work (I'm going to try to work a modified shift again this Wednesday night - a half shift). Anyway, our local hospital is so tiny and run down and does not have the resources to care for any complicated cases. The doctors simply do not have the knowledge to care for complicated cases. The ambulance attendants are not allowed to travel out of bounds into the hospitals where my specialists are, therefore if I can not travel by car, I'm kind of screwed. So, my last ER visit, two weeks ago, the doctor treated me for a migraine, when I was having severe weakness in my chest, trouble breathing, and severe pain in my neck and right eye. (My husband even said I went as white as a sheet and my eyes rolled back.) The doctor sent me home with pain medication. I was hoping she would call the neighbouring city (where my specialists are) for a consult and transfer me for admission.
You are going to have to TELL them that you have Graves' Disease, that it is life-threatening (and it is) and that you must be put on anti-thyroid med until such time as you can get it ablated.

Bottom Line.

What country are you in? Maybe this will help?

UK Thyroid patient advocacy
http://www.tpa-uk.org.uk/thyroid_hormones1.php

And this.............

Thyroid Storm Symptoms
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001437

If you have a Thyroid Storm, you can die.

I am very worried for you; very!

 

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Discussion Starter · #15 ·
Kaye, thank you so much. My gosh it feels so good to have people care and know that my situation is not made up.. that it's real. I'm so glad that I've joined this website.

This morning was hard. So weak again and so much pain in the right side of my neck and collarbone. My family doctor's office called this morning to say that my blood work has come back. Now my ENA is positive. I asked her (the nurse) for numbers and she said there isn't any on the report, it just says 'positive'. I asked her what it means and she said she didn't really know. I tried looking it up with that 'labtestsonline' website but it wasn't really clear. I guess it just means that I have an autoimmune disorder. Anyway, I really hope that the ultrasound on Thursday shows something because I really can't keep going on like this. Thank you so much everyone for your help.
 

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Robyn said:
Kaye, thank you so much. My gosh it feels so good to have people care and know that my situation is not made up.. that it's real. I'm so glad that I've joined this website.

This morning was hard. So weak again and so much pain in the right side of my neck and collarbone. My family doctor's office called this morning to say that my blood work has come back. Now my ENA is positive. I asked her (the nurse) for numbers and she said there isn't any on the report, it just says 'positive'. I asked her what it means and she said she didn't really know. I tried looking it up with that 'labtestsonline' website but it wasn't really clear. I guess it just means that I have an autoimmune disorder. Anyway, I really hope that the ultrasound on Thursday shows something because I really can't keep going on like this. Thank you so much everyone for your help.
ANA is "suggestive" of many autoimmune diseases. Further testing is crucial.

Please read in it's entirety..............
http://labtestsonline.org/understanding/analytes/ana/tab/test

Edited to add that maybe it is ENA; http://labtestsonline.org/understanding/analytes/ena-panel/tab/test

If it is, it too is "suggestive" as noted above.
 

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Discussion Starter · #19 ·
It sounds like ANA and ENA are very similar anyway from what I read. It does sound like this is something the Rheumatologist would be interested in knowing though... so I left a message for them to make sure that they get this report (as my family doctor had to call for it). I know that I don't have lupus.. I really don't have any of the symptoms of it.

It does make sense to now have this result because my body attacking my thyroid right (that's what the abnormal Anti TPO result meant)?
 

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Oh, okay...we don't see much "ENA" here. But you're right...it looks like they seem to be used for a similar purpose, and according to what I read, the ENA is generally not ordered unless there's a positive ANA.

You say you know you don't have lupus...what else has been ruled out? Are you pretty certain you'd be heading down the right path if you concentrated on possible thyroid issues?
 
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