Affraid & getting no anwers!!

[bogart777]

I have fiber neuropothy pain & nerve damage with numbness in both hands & feet. My neurologist can't seem to find out whats going on. My hair has been coming out like crazy with thinning eyebrows. I have been getting very forgetful,foggy memory. Cold hands & feet. Nails on hands & feet get blue/purple at times. No libido at all! Bad heavy periods. Gained weight. Severe constipation.  I'm in pain all the time. Eyes twitch,dizzy headaches. Ears ring & hearing seems to be getting bad. I woke up the other night choking like I had something in my throat & for the last few weeks I feel like some thing is choking me & putting lots of pressure on my throat.
I'm sorry to keep going on but there are so many more symptoms. I forget what I'm talking about all the time & can't focus!
I'm afraid that one morning I'm going to wake up & won't be able to walk because I have no feelings left in my feet. I'm in pain all the time & doc has me on Nurotin/Gabapentin 2700 mg a day. The doc said all blood work came back ok. That was 5 months ago & things are getting worse losing more feelings in feet & hands. I had a nerve test done & they did find nerve damage. I'm not diabetic either. Could this be hypothyroid??
Please help, I feel like I'm alone on this & loosing the battle!!

[toni2251]

Hi I want to encourage you. I had neuropathy so bad in my shins that I cried so much that I thought the pain would never end. I doc gave me neurontin, but I did not take it. When I started my b12 my neuropathy is about 80% better and it is truly getting better. This thyroid thing is so tiring. I realize stress can truly trigger our bodies to become messed up. Hashimotos runs in my family but so does stress lol! Make sure you take your vitamins and minerals. Even if you feel sick after taking, this will pass. We live in an age of fast food, sugar and soda pop all of which depletes our bodies. I am still trying to understand this disease. I'm sure I will in time. God bless you!

[KjoOw]

Hi, just read your post. Have you ever had an MRI or Ct of your brain and cervical spine? I have all your symptoms and today I was told I have hypothyroid. I'm getting an ultrasound on it tomorrow.  But with all the nerve pain, you should ask for the MRIs and/or CTs to be checked for Chiari Malformation. I have that with syringomyelia, and tethered cord. But the syringomyelia can cause much of the pain where they call "the cape" area. Right now, I'm trying to find the link between Chiari and hypothyroid. I hope any of what I said could be of some help. Good luck.

[bogart777]

Thank you,
As soon as I find a new family doc I'm having all the thyroid tests done. I'm just affraid I'll get one of those doctors that don't really know much abouth the thyroid blood test & tells me everything is ok when it could be more. I just know something's going on.

[bogart777]

Hello every & thanks for your help.
I do also have anxiety & depression comes & goes from day to day. My neuro never could give me an answer to what was causing the nerve damage. I know he ran every kind of blood test that I know of & some the hospital were not familiar with. My neuro gave me the Gabapinton/Nerotin for the pain that I have. It really don't take the pain away just takes the edge off a bit. I started at 300mg a day now take 3-300mg 3xday. The only symptom I can think of was when I first started taking it I got really tired & it actually kind of helped my anxiety, but not anymore. I do wonder if the foggy memory is from the medicine but I'm not sure. I think it just made it worse. I'm in the progress for looking for another family doc. My neuro said he wants me to see one for further testing. He also had me to get a mammagram, which showed a small pea like growth but said it was nothing to worry about. Now wants me to go see my OB/GYN to have testing. I do have a history of endometreosis (since age of 12) I wonder some times if this could cause some of this. I've read that it can spread through out the body. In 2004 my doc that I use to have said I had EBV, which I had no idea how I got it & didn't even know I had it until I got really sick & my spleen swelled really bad. That makes me also wonder if any of this could be results from that. I just feel like I've never really been myself since then. I'm a super stressed woman in my early 40's so their are many things I guess it could be, like possible menopause for some of the symptoms. But I'm just worried about the numbness,pins & needles,& burning that I have in my feet & hands.  I'm getting affraid to drive & I'm always affraid I'm going to fall because it's getting so bad. Neuro just said it was peripherial neuropathy. Don't know the cause of whats doing never damage & whats causing all these syptoms. He said if things come back ok with the ob/gyn he wants to send me to a state doc for tesing. Which I'm not really wanting to do . I don't want to be a pin cushion again. Oh, and doc didn't say anything about sheath damage , just said there was nerve damage that was spreading. It also worries me because of the feeling I have in my throat & the chocking I get witch makes me cough. I just feel like I'm always on high speed, racing feeling & can't sleep. Night time is the worse time! Oh and I hate it when the doc looks at you sometimes like oh thats nothing!

Thanks for reading this far, sorry to ramble on. This is the only place I can come for support! When you look normal no one really belives theres anything wrong!

Take care all!! :0)

[bogart777]

Hi tonni2251, My last test results did say that I was Vitamin D deficient. Doctor gave a a very high dose to take for 4wks. Then I started taking D3 5000 twice a day for 2wks then down to 1 a day. I havn't really noticed anything yet. I'm not sure what my B12 was. From what I've been reading, I think I'm going to get some B12,Iron & Magnesium. Hopefully that might help with some of these symptoms. Thank you! Take care.

[FTB4]

You are not alone, I too have tha same symptoms, only my neuropathy Nerve pain is in my upper arms and shoulders, I had both Nerve Conduction Velocity and Electromyography tests done, they said all of my tests points were abnormal, I have Hashimoto's, in addition I had Polio when I was 7, and now I have been diagnosed with Post Polio Syndrome, but my Neuro said he thought the Neuropathy was caused by something else, Did your test results mention anything about the "Myelin Sheath"  This is a coating on the nerve, much like the insulation on an electric wire, when the sheath is destroyed, the nerve becomes inflammed, causing nerve pain. There are many things that can cause this to happen, some of them are: Vitamin B12 Deficiency, Lyme Disease,Post Polio Syndrom, HIV, Diabetes and Leprosy, that is only a few, the term for the destruction of the sheath is called "Demyelinating Neuropathy" This condition is treatable if the cause of it can be found and treated, The Myelin Sheath will grow back, although the period of regrowth takes longer than the time it takes to destroy it, so the source must be determined. I was diagnosed just a week ago, My neurologist has tested me for Lyme,Vitamin B 12, Rhuematoid Arthritis and three others that I do not recognize, all came out Negative. So the process go's on. I read several articles about this condition and one stated that a condition exists where just like Hashimoto's, the auto-immune system attacks the Myelin Sheath, causing nerve inflammation, What was the determination from your nerve test? Did they give you a copy of the report?  My pain is worse in the evening, I sleep on my side, and being that the most aggravated nerves are in my upper arms and shoulders, I am tossing and turning all night. So I know exactly what you are going through.I just started out on a very low dose of Neurontin, I also take Tramadol Twice a day, it seems to do more for me than the Neurontin, I am waiting for my Neurologist to call now to up my pain meds.  Sorry for your pain, I know it is miserable. After seeing you are taking such a high dose of Neurontin, does not give a good prospect for this medication.  Best Regards FTB4

[elliot777]

Good Morning!
I can only imagine with all of these symptoms how difficult it must be for you to function.  You are much stronger than you give yourself credit!!

I suggest you follow the advise & above.  Should your physician be reluctant to conduct these tests find a new physician.  Research the tests mentioned...perhaps print facts that support your requests.

Thyroid is tricky.  Once diagnosed correctly it can be corrected with medication.  However, it doesn"t happen in 30-60 days.  More like months.  Be patient with yourself.  YOU are your best advocate!!  Educate yourself & be prepared.

Your thyroid is the engine for all of your other organs.  Hypothyroidism frequently leads to symptoms you have described as well as anxiety/depression.  Anxiety/depression suppresses your thyroid.  A vicious cycle.

Is it correct you take 2700mg of Gabapentin/neurotin a day?  What is the diagnosis & prognosis for the nerve damage?  Do you suffer from any side effects of this drug?  

Keep us updated.  Thank you for sharing with all of us.  You are not alone.  Keep asking questions & seeking help!  You are making good decisions for yourself!!  Keep it up!

warmest regards,

elliot777

[toni2251]

I want to add also that you would be surprised how important vitamin defiency can cause symptoms. I'm still very much out of balance on my thyroid but I started taking b12 supplements and my buzzing went away. Make sure you are taking a good multivitamin. It is so important with thyroid issues. Try not to panic. I know it's hard. I still cry, but I know it will get better. Hang in there!

[gimel]

With all those symptoms that are frequently associated with hypothyroidism, and related deficiencies, as soon as possible I suggest that you should get tested for the biologically active thyroid hormones, Free T3 and Free T4 (not the same as Total T3 and T4), along with TSH that they always test.  Also, test for the possibility of Hashimoto's Thyroiditis, by testing for the thyroid antibodies.  For that you need to test both TPO ab and TG ab.  I would also strongly suggest that you test for Vitamin B12, D, and ferritin.  

If you can get the doctor to agree, then also make sure the lab people know that the thyroid tests are specifically for Free T3 and T4.  I say this because so many times they seem to run on auto pilot and do the usual tests for Total T3 and T4, and then you find out that you don't have the info needed.  

When all these important test results are available, please get a copy of the lab report and post results and reference ranges and members will be glad to hlep interpret and advise further.