Aa
A little help please
I'm 50 yr old female. I take thyroid med, 100mg, tsh levels normal for 2 yrs. Started with neuropathy in R foot, then moved into L foot, now in R hand and now face involvement for past two months. Ck level slightly elevated in past. Muscle stiffness and cramps in legs and feet at night. Starting to lose strength in fingertips of R hand mostly. Any ideas. Going back to neurologist soon. Was told probably just the hypothyroidism in past. Shouldn't that get better with meds not worse.
When I was hypo I had symptoms of tingling hand and feet, muscle cramps, stiffness, and had to lift my legs when getting out of bed or the car. My last two thyroid tests showed I was within normal range, but I still felt hypo. My endo upped my synthroid and it is helping.
COMMUNITY LEADER
What are the reference ranges for the T4 and FT3? Is the T4, a test for "free" or "total"? That makes a big difference. What about TSH?
What's the reference range for your B12? I have pernicious anemia, too, and even after my B12 levels made it to 532, I was still pretty ill.
You said "I've also have had tests for auto immune disorders." Which auto immune disorders have you been tested for? Goolarra mentioned the tests necessary to confirm or rule out Hashimoto's.
What's the reference range for your B12? I have pernicious anemia, too, and even after my B12 levels made it to 532, I was still pretty ill.
You said "I've also have had tests for auto immune disorders." Which auto immune disorders have you been tested for? Goolarra mentioned the tests necessary to confirm or rule out Hashimoto's.
Okay, found some numbers for everyone who cares. Last two t4's were 9 which is right in the middle of H/L range. Free t3 is the same 3.16 right in the middle. I only went a total of 2 months before I began thyroid meds. All the women in my family developed this disorder. They had problems in their early 40's. I didn't develop it until I was 48, but I insisted that Doc's check it every year.
When I first started to notice how tired I was becoming I went to the Dr. My Dr put me through a battery of tests. I had my heart tested, blood work done, the whole nine yards. From possible onset to under control was March 2008 to Sept 2008. In Aug of that yr I started to have pains in my hips. I felt stiff like arthritis. So the next test involved checks for arthritis and such. One test was a CK it came back 147. Since everything else was now normal test wise she said it was just residual from the thyroid problem. Long story short, months went by, saw two other Drs, my CK test would rise and drop over the next year, the highest was 227, the lowest was just a a point or two above normal female. I went to a neurologist. He said maybe it was the thyroid, not sure, not enough strong signs to suggest otherwise. I have absent deep tendon reflexes so it fits into the scenario. He labeled it myopathy, and when the symptoms progressed a little more, he added peripheral neuropathy. My primary care says possible hypothyroid problem, but he seemed really concerned when I told him about the neuropathy spreading to my head and face. By the way. I am not diabetic. I ate a cookie before my last glucose test and it was still under 90. Like I said, I am seeing the neurologist again this month. He told me that the next step if I progressed was a muscle biopsy, or maybe nerve testing or both.
Oh yeah forgot, B -12 532 folate 14.9. I am the healthiest sick person I know.
When I first started to notice how tired I was becoming I went to the Dr. My Dr put me through a battery of tests. I had my heart tested, blood work done, the whole nine yards. From possible onset to under control was March 2008 to Sept 2008. In Aug of that yr I started to have pains in my hips. I felt stiff like arthritis. So the next test involved checks for arthritis and such. One test was a CK it came back 147. Since everything else was now normal test wise she said it was just residual from the thyroid problem. Long story short, months went by, saw two other Drs, my CK test would rise and drop over the next year, the highest was 227, the lowest was just a a point or two above normal female. I went to a neurologist. He said maybe it was the thyroid, not sure, not enough strong signs to suggest otherwise. I have absent deep tendon reflexes so it fits into the scenario. He labeled it myopathy, and when the symptoms progressed a little more, he added peripheral neuropathy. My primary care says possible hypothyroid problem, but he seemed really concerned when I told him about the neuropathy spreading to my head and face. By the way. I am not diabetic. I ate a cookie before my last glucose test and it was still under 90. Like I said, I am seeing the neurologist again this month. He told me that the next step if I progressed was a muscle biopsy, or maybe nerve testing or both.
Oh yeah forgot, B -12 532 folate 14.9. I am the healthiest sick person I know.
Your comments are the very first I have addressed; I am new here. I want to agree with Barb135 completely about thyroiditis, B12 and peripheral neuropathy. My B12 level was down to 68 (almost unheard of) and I was days away from unnecessary & extensive surgery on my cervical spine due to numbness and tingling in my feet, legs, abdomen, neck (L'hermitte's) AND arms and numb hands.
It was not until i saw my third neurologist who was checking me for MS due to brain lesions that the possibility of B12 deficiency was mentioned (as an afterthought) as i was walking out the door. I could not walk, hold a pen or type. I was close to a wheelchair - all because of a vitamin deficiency. My treatment began under two years ago and B12 levels soared however numbness and tingling very very slowly improved somewhat but never disappeared.
Actually I thought it was my B12 levels acting up again when the numbness worsened - only to find eventually that my thyroid was very underactive. Big surprise. I have been on levothyroxine 100 mcg for almost 2 months and my mood is somewhat better but my physical symptoms are about the same. I too get deep cramps and reduced reflexes.
Do get your B12 level checked for your own good. Don't let it get as bad as mine. Also, I have pernicious anemia, an autoimmune disease, which is why the B12 does not absorb. I plan to find out if my thyroid condition is autoimmune but need a new doctor to do so. If I had to bet - I would bet yes, since I have two already.
All these posts offer good information. One of the hardest things for most of us, I would venture, is the patience to deal with these tricky and multi-faceted conditions. I wish you all the luck and strength you need to find the answers you seek.
It was not until i saw my third neurologist who was checking me for MS due to brain lesions that the possibility of B12 deficiency was mentioned (as an afterthought) as i was walking out the door. I could not walk, hold a pen or type. I was close to a wheelchair - all because of a vitamin deficiency. My treatment began under two years ago and B12 levels soared however numbness and tingling very very slowly improved somewhat but never disappeared.
Actually I thought it was my B12 levels acting up again when the numbness worsened - only to find eventually that my thyroid was very underactive. Big surprise. I have been on levothyroxine 100 mcg for almost 2 months and my mood is somewhat better but my physical symptoms are about the same. I too get deep cramps and reduced reflexes.
Do get your B12 level checked for your own good. Don't let it get as bad as mine. Also, I have pernicious anemia, an autoimmune disease, which is why the B12 does not absorb. I plan to find out if my thyroid condition is autoimmune but need a new doctor to do so. If I had to bet - I would bet yes, since I have two already.
All these posts offer good information. One of the hardest things for most of us, I would venture, is the patience to deal with these tricky and multi-faceted conditions. I wish you all the luck and strength you need to find the answers you seek.
COMMUNITY LEADER
There's not much I can add here, except that I agree with what the others said; just because your numbers are "normal" or "in range", doesn't mean that's right for you.
You said: "I want to know why everyone keeps thinking that my thyroid can cause all this damage, when my mother went untreated for years before she developed serious symptoms. Also, everyone I know who has hypothyroidism does not have peripheral neuropathy as a symptom, along with muscle cramps, stiffness, and absent deep tendon reflexes."
The symptoms you listed can all be caused from being hypo. The fact that your mother went untreated for years before she developed serious symptoms, doesn't mean that you can do the same; or just because others you know who are hypo, do not have peripheral neuropathy, doesn't mean that yours can't be caused by your thyroid.
We are all so very different; we each have our own set of symptoms; we each react differently to medications, etc. Yes, this holds true even within the same family.
Have you had your vitamin B12 levels tested? B12 deficiency can cause peripheral neuropathy. I was deficient in B12 for many years and have permanent damage caused from it.
You said: "I want to know why everyone keeps thinking that my thyroid can cause all this damage, when my mother went untreated for years before she developed serious symptoms. Also, everyone I know who has hypothyroidism does not have peripheral neuropathy as a symptom, along with muscle cramps, stiffness, and absent deep tendon reflexes."
The symptoms you listed can all be caused from being hypo. The fact that your mother went untreated for years before she developed serious symptoms, doesn't mean that you can do the same; or just because others you know who are hypo, do not have peripheral neuropathy, doesn't mean that yours can't be caused by your thyroid.
We are all so very different; we each have our own set of symptoms; we each react differently to medications, etc. Yes, this holds true even within the same family.
Have you had your vitamin B12 levels tested? B12 deficiency can cause peripheral neuropathy. I was deficient in B12 for many years and have permanent damage caused from it.
I think that hypothyroid and Fibromyalgia are connected as far as a symptom. I do not know about any connection to peripheral neuropathy.
They maybe totally unrealted. But that does not mean that your thyroid is less effective as you age thus leaving you incrimentally more and more Hypo as time passes.
Like other said. Dr's seem to only want to test for TSH and as long as you are within "range" that is treatment enough. This is total B.S. You MUST have free T3 and free T4 tests done to have a clue. Something many Dr. will not do even if you demand it. Like stated above even when within these ranges, that doesn't mean you won't have symptoms. Most seem to report the need to be in the upper 1/3 of the range. so if mid point or below in the range, you are probably Hypo.
You need to find a Dr. who is willing to test for the FREE T3 & FREE T4 and also treat you based on symptoms NOT on lab tests within range. Trust me. This is NOT an easy thing to find. My wife is still trying to find such a Dr.
They maybe totally unrealted. But that does not mean that your thyroid is less effective as you age thus leaving you incrimentally more and more Hypo as time passes.
Like other said. Dr's seem to only want to test for TSH and as long as you are within "range" that is treatment enough. This is total B.S. You MUST have free T3 and free T4 tests done to have a clue. Something many Dr. will not do even if you demand it. Like stated above even when within these ranges, that doesn't mean you won't have symptoms. Most seem to report the need to be in the upper 1/3 of the range. so if mid point or below in the range, you are probably Hypo.
You need to find a Dr. who is willing to test for the FREE T3 & FREE T4 and also treat you based on symptoms NOT on lab tests within range. Trust me. This is NOT an easy thing to find. My wife is still trying to find such a Dr.
Lab reference ranges for FT3 and FT4 are flawed. When the population ranges were developed, many of the "normal" subjects were actually undiagnosed hypos or people in the early stages of Hashi's. Therefore, the lower part of both ranges is questionable, and many of us find that FT4 levels have to be at least midrange and FT3 upper half to third of range before our symptoms are relieved. Many doctors stop increasing meds the minute patients pop back into range...a big mistake.
Please post your results and ranges from your own lab report. Ranges vary lab to lab.
You may have other issues besides thyroid going on, I don't know. However, all the symptoms you listed can be symptoms of undertreatment. Please post FT3, FT4 and TSH, and we can comment more specifically. Which antibodies were tested for autoimmune disease? TPOab and TGab both have to be tested to rule out Hashi's since some of us are TPOab positive, some TGab positive and some both.
Please post your results and ranges from your own lab report. Ranges vary lab to lab.
You may have other issues besides thyroid going on, I don't know. However, all the symptoms you listed can be symptoms of undertreatment. Please post FT3, FT4 and TSH, and we can comment more specifically. Which antibodies were tested for autoimmune disease? TPOab and TGab both have to be tested to rule out Hashi's since some of us are TPOab positive, some TGab positive and some both.
Thanks for replying. All my thyroid test are normal. I don't have the info in front of me at the time, but I know my Doc checked everything just in case last time. I've also have had tests for auto immune disorders.
Also, I had a typo. I'm on 100 mcg. levothyroxine.
I want to know why everyone keeps thinking that my thyroid can cause all this damage, when my mother went untreated for years before she developed serious symptoms. Also, everyone I know who has hypothyroidism does not have peripheral neuropathy as a symptom, along with muscle cramps, stiffness, and absent deep tendon reflexes. I'm showing symptoms of a Lower Motor Neuron disorder. It's somehow not logical. I'm not just a tired old cranky lady, something is wrong.
Also, I had a typo. I'm on 100 mcg. levothyroxine.
I want to know why everyone keeps thinking that my thyroid can cause all this damage, when my mother went untreated for years before she developed serious symptoms. Also, everyone I know who has hypothyroidism does not have peripheral neuropathy as a symptom, along with muscle cramps, stiffness, and absent deep tendon reflexes. I'm showing symptoms of a Lower Motor Neuron disorder. It's somehow not logical. I'm not just a tired old cranky lady, something is wrong.
To get a better response post your labs, Free T3 and Free T4 and ranges of same, it does not happen just because the MD prescribes a med, I have been back and forth with symptoms about two years, finding the right MD/Endo makes difference also, They need to medicate you by your symptoms and how you feel and not just lab ranges to fine tune the dosage. Post your results here and ask for help. Good Luck FTB4
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