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Old 01-15-2011, 04:12 PM   #1
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Head Tingling/Off Balance/Face Tingling/Scared to Death

Hi All:
I am just wondering if anybody with hashi/hypo thyroid suffers with tingling. It started over a year ago on the top of my head and is now on my face arms and legs and feet. I am scared to death. I have posted on these boards many times already. i am still looking for answers. Besides the tingling, i feel sick all over. I have no energy and have digestive problems and have fullness in ears/balance problems. Just to name a few. I don't think it is related to my thyroid, but you never know. It seems like lyme disease but i have tested negative so far. I am waiting for a test to come back from Igenix. I have been to thousands of drs. with no answers. I am worried sick. Does anybody have anything like this? LaLa

 
Old 01-15-2011, 11:10 PM   #2
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Re: Head Tingling/Off Balance/Face Tingling/Scared to Death

Have you ever been evaluated for hypo- or hyperparathyroidism? Tingling is a hallmark sign of trouble there. I can't tell you much on the subject besides that.

Do an Advanced Search for posts by hopalong_too. She has both thyroid and parathyroid problems. Now that the PT problem has at long last been diagnosed, she's feeling much better.

 
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Old 01-16-2011, 06:59 AM   #3
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Re: Head Tingling/Off Balance/Face Tingling/Scared to Death

Midwest:
thanks so much for your reply. I looked up hopalongs post. It is interesting since my last calcium test was a little high. But my dr did do the blood work for the parathyroid and it was ok. of course, i am not sure whether we can always count on accuracy of blood work. I also looked up symptoms of hyperparathyroid and i saw very little on tingling. That was not a symptom that showed up to much. Maybe a little. I have very bad tingling of the top of head and face mainly and sometimes the feet and arms. But i will look into it further. Everything i read from hopalong was interesting but i find it very complicated. In the meantime Lyme still sticks out in my mind as well as fibro/chronic fatigue and candida. Besides all the symptoms of thyroidism, i also have feelings of post nasal drip that i have never had until this illness and severe neck pain and ear fullness with an off balance feeling and tons of other symptoms. Take all the symptoms of the syndromes i just mentioned and put them all together. That is what i am suffering with. I am very depressed over this and it has ruined my life. This whole illness has taken the life out of me. I am a different person then i was. I need resolve and i don't know where to turn. Thanks for listening and responding. Talk soon. LaLa

 
Old 01-16-2011, 07:01 AM   #4
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Re: Head Tingling/Off Balance/Face Tingling/Scared to Death

The symptoms you've described are some of the many I've had when my thyroid hormone levels were too low for me - hypothyroidism.

Why don't you get some thyroid testing done? TSH (thyroid stimulating hormone), FreeT4 (T4, free, direct) and FreeT3 (Tri-iodithyronine, free, serum) and post the results here, with ranges? (ranges can vary from lab to lab and by geographical area)

I have found that many doctors don't think to check the thyroid and those that do can sometimes misinterpret the results (ie my GP always checks my thyroid but didn't recognize the hypothyroid symptoms I had since my levels were in-range (yet too low for ME)

I'm not saying you are definitely hypothyroid but the lab tests would certainly confirm.

 
Old 01-16-2011, 08:20 AM   #5
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Re: Head Tingling/Off Balance/Face Tingling/Scared to Death

CD:
Thanks for your quick reply. But i already know that i am hypothyroid/hashi. i have have thryoid disease for about 18 years. i have been on synthroid and get my levels checked every 3 -4 months. This whole tingling has only started about 1 1/2 yrs ago. All the other syndromes started about 5 yrs ago after getting a virus. Thanks though. Lala

 
Old 01-16-2011, 09:20 AM   #6
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Re: Head Tingling/Off Balance/Face Tingling/Scared to Death

Hi Lala

Even though you've been hypothyroid for a long while doesn't mean your levels are optimal for you. Hashi's is an autoimmune disease that causes a slow destruction of the thyroid gland, reducing its capacity to produce hormones.

Being sick causes an increase in antibody production so your Hashi's antibodies might have increased as well, causing further destruction of your thyroid.

Some people taking meds such as synthroid find themselves in need of a T3 supplement as well.....that's where I'm at now.

You just might want to take a peek at your labs and, if your FreeT4 is not mid-range or higher and/or your FreeT3 is below mid-range, then you probably need a dose
adjustment and might also need to add some T3.

Last edited by cd37; 01-16-2011 at 09:21 AM.

 
Old 01-16-2011, 09:34 AM   #7
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Re: Head Tingling/Off Balance/Face Tingling/Scared to Death

cd:
I agree with you. I will be taking another blood test in about 3 weeks. I will try to remember to keep you posted as to the readings. Are you supplementing for the 3T. If so what are you taking?
LaLa

 
Old 01-16-2011, 09:49 AM   #8
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Re: Head Tingling/Off Balance/Face Tingling/Scared to Death

I started taking 5mcg generic Cytomel in two divided doses along with 75mcg levothyroxine. (my doctor reduced my levo dose somewhat, as is appropriate once someone starts Cytomel)

I think I need to increase my Cytomel dose (started a thread here earlier today) since I started having hypo symptoms (chills, achy knees, afternoon fatigue) and that is a sign a dose adjustment is in order.

I know that I need both my FT4 and FT3 to be towards the high end of the normal range for me to be symptom-free.

I've read a TON of books about hypothyroidism and they all mention the need for T3 in patients still having symptoms when FT4 is in a "good place" yet FT3 is relatively low. Makes sense to me

(you can take a peek at my lab history on my thread, if you're interested)

 
Old 01-16-2011, 11:27 AM   #9
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Re: Head Tingling/Off Balance/Face Tingling/Scared to Death

cd
My endo did mention a possibility of supplementing with cytomel but she said it could put me into being hyperthyroid. We decided we would see what my next blood work shows. But as i said, you can't always go by blood work which makes things more difficult to treat. also i was checking around and other thoughts about my symptoms are mineral deficiency like b12, potassium and magnesium, and vit d. I have been checked for these but not recently. There are lots of other reasons also too. Also, i get very jittery and nervous feeling. Do you? That is usually hyper but i am hypo. My last blood work i was very hypo. What i did not tell you before, just because it is so much to tell. I get tired of typing it all. I wish we could talk on phone. I am more of a phone person. But anyway, in the summer my levels were a little hyper so the dr. lowered my dose of synthroid. I had been on a combo of half an .88 and half of .112 which made it around 106mg. I was on that for quite a while. then suddenly i became hyper so she lowered me to .88. I still felt very hyper and the blood work showed still a little hyper so she lowered me to .75. But i was stupid and decided to go off of snythroid and see what happens in about 8 weeks . Well, don't ask!!! My levels were off the charts hypo. So now i am back on synthroid at .75mg. It has been four weeks back on. I still feel horrible. In about three weeks i will go for another blood test and see what happens. But i have had all these problems for a very long time. I don't think my tingling has anything to do with the thyroid. This tingling thing has been going on for over 1 1/2 yrs. I feel like there is some other reasons for it. I am still searching. I must tell you though, that i have been having a lot of hair loss which has always been a symptom of thyroid issues. i want you to know that when i was off the synthroid, i barely shed a hair. That proves to me that the hair loss is not about being hypo, but i feel it is a side effect to the synthroid. What do you think? LaLa p.s. i am also in menopause which can create some symptoms.

 
Old 01-16-2011, 11:52 AM   #10
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Re: Head Tingling/Off Balance/Face Tingling/Scared to Death

You know, I do wonder what level your doctor is looking at when she says it showed hyper. If she's looking at TSH, that is a recipe for disaster. TSH is a pituitary
hormone - when we are taking thyroid hormone replacement meds, the doctor should be looking at thyroid hormone levels (FT4, FT3) 'cuz TSH is often low/suppressed
when taking those meds at doses that will eliminate symptoms while keeping our FT4/FT3 levels within range.

Most often, when people take Cytomel, their TSH becomes suppressed (there is a distinct relationship between FT3 and TSH levels)....this does NOT mean you're hyper.

I have been researching thyroid stuff for over 3 years now....I've read a TON of books and participate on several thyroid forums (just started posting here).

The first 3 endos I saw had no idea how to treat thyroid disease....neither did my GP. Most of the time, I was kept hypo...things got so bad, I started Googling any symptom
I had and "hypothyroidism".....I always found the symptom on one of "the lists". Tingling can be a hypo symptom. I know you think it might be something else but it makes
sense to me to make sure your thyroid levels are in a "good place" first.

I learned how to read and understand my labs....being somewhere in the normal range is NOT good enough. I got lucky and found a "with-it" internist in Nov. 09 who understands that each of us has his/her own "normal" with the normal range - what a difference a doctor can make!

Again, your doctor should be looking at your FT4 and FT3 levels.....sure hope you share them here and I'll gladly help you interpret them, if you're not familiar.

Hair loss is a common thyroid symptom, as you know. The fact that it stopped when you went off synthroid does not necessarily mean it was a side effect of synthroid....more likely than not, it was a delayed reaction. Even though you stopped taking synthroid, the med stays in your system a long while due to its long half-life. I suspect your levels before stopping synthroid were good enough for hair loss to ease up and the process started just as you went off. Most times, when someone has symptoms when taking synthroid (or any thyroid med), it means their thyroid hormone levels are not at their "best place".

Anxiety is also a hypo symptom. You might want to Google "long and pathetic list of hypothyroid symptoms" to find one of the most comprehensive lists of hypo symptoms I've ever read.

I learned all this stuff the hard way and thank God I have a doctor that has worked with me to find MY "best place" within the ranges of normal - as long as my dose is adjusted to keep me at MY "best place", I am symptom-free...what a world of a difference!

Last edited by cd37; 01-16-2011 at 12:06 PM.

 
Old 01-16-2011, 12:18 PM   #11
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Re: Head Tingling/Off Balance/Face Tingling/Scared to Death

cd: thanks so much for all your good info. i just a phone call that is going to be a long one. Then i have a dinner party that i have to go to. I am to tired but i must go. I will get back to you tonight or tomorrow. Thanks so much. Talk to you later.

 
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