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Hypothyroid Neuropathy?
Hello Again,
I am a 69 year old male, 175 lbs, who has been on synthroid for about 40 years (no thyroid, thyroiditis). This past Feb. my PCP lowered my levothyroxine 20% to 0.125 because my TSH was 0.1 (t3=89 t4=1.3). I became very hypothyroid symptomatic with fatigue and muscle aches.
He raised my levo to 0.137 in Apr.
My May TSH=0.48 t3=73 t4=1.3.
In June my feet and legs began to burn and ache with some tingle in hands.
In mid June 5 mcg of Cytomel was added.
June 30 TSH=0.1 t3=88 t4=1.2, vitamin B12=600. M
I have now increased Cytomel to 10mcg. Feet and legs still burn and ache. Less fatique.
I have had daytime RLS and tinnitus for years and do now.
I believe I have Hypothyroid Neuropathy. PCP agrees I have neuropathy.
My T3 levels are in and below of low normal and probably have been a long time.
I can't get to see an endo for 1.5 months!
Will bringing T3 to mid normal range help fix the neuropathy?
How do I do this if my TSH is 0.1?
Should reverse T3 be known?
Do you see much hypothyroid neuropathy and does it go away after how long?
This is something I never expected and has me very concerned?
Thank you, John
I am a 69 year old male, 175 lbs, who has been on synthroid for about 40 years (no thyroid, thyroiditis). This past Feb. my PCP lowered my levothyroxine 20% to 0.125 because my TSH was 0.1 (t3=89 t4=1.3). I became very hypothyroid symptomatic with fatigue and muscle aches.
He raised my levo to 0.137 in Apr.
My May TSH=0.48 t3=73 t4=1.3.
In June my feet and legs began to burn and ache with some tingle in hands.
In mid June 5 mcg of Cytomel was added.
June 30 TSH=0.1 t3=88 t4=1.2, vitamin B12=600. M
I have now increased Cytomel to 10mcg. Feet and legs still burn and ache. Less fatique.
I have had daytime RLS and tinnitus for years and do now.
I believe I have Hypothyroid Neuropathy. PCP agrees I have neuropathy.
My T3 levels are in and below of low normal and probably have been a long time.
I can't get to see an endo for 1.5 months!
Will bringing T3 to mid normal range help fix the neuropathy?
How do I do this if my TSH is 0.1?
Should reverse T3 be known?
Do you see much hypothyroid neuropathy and does it go away after how long?
This is something I never expected and has me very concerned?
Thank you, John
A related discussion, burning skin sensation was started.
Thought I should post a follow up to my first post of July 4. I have since seen a neurologist for tests and, finally, an endocrinologist 3 weeks ago. The endo had my latest blood test after being on 0.15 mg levo and 10 mcg of Cytomel (Cyotomel for about 2 weeks). While my T3 and fT4 were in mid normal, my TSH was 0.033. She declared me Hyperthyroid and wanted to cut my levo back and stop Cytomel. I agreed to stop Cytomel but became very resistant to lower levo. I have since been at 0.15 Synthroid for three weeks and have enough energy to feel normal. I still have RLS and less burning in my feet. It's true what they say about endocrinologists, they live by the TSH test. I asked her how my T3 and T4 could be in mid normal range and still have a TSH below 0.1.
Her reply was t3 and t4 are unreliable. I really believe that for someone with no thyroid, they have to be treated by how they feel and these other tests should be used as a guide. If she tries to lower my Synthroid to bring my TSH close to 1, I think I will be sick again. I go for a TSH test in 2 weeks.
On my neuropathy in my feet and legs, which became apparent when I started Cytomel, it is not so bad now since being off Cytomel for 3 weeks. My neurologist tests included an EMG (very painful electric shocks) which tested for large fiber nerve damage, it was normal. Also an MRI of my head, normal and 2 skin puncture leg biopsies for small fiber neuropathy, still waiting for results. I have since learned from my neurologist that after diabetes, thyroid disease, hypo or hyper, is the 2nd most common cause of neuropathy! Do endocrinologists know this? Until the biopsy test comes back I won't know if I have small fiber neuropathy but tne neurologist thinks that is what I have. Small fiber (nerves) neuropathy is caused by these nerves dying back from the feet upwards. Also, RLS can be caused by SMF so this may have been developing over several years. It may take months or years to repair or not. I have been on thyroxine for about 38 years and maybe this is a long term effect. It's certainly news to me and I don't know how common it is.
I hope the endocrinologist can figure this out.
John
Her reply was t3 and t4 are unreliable. I really believe that for someone with no thyroid, they have to be treated by how they feel and these other tests should be used as a guide. If she tries to lower my Synthroid to bring my TSH close to 1, I think I will be sick again. I go for a TSH test in 2 weeks.
On my neuropathy in my feet and legs, which became apparent when I started Cytomel, it is not so bad now since being off Cytomel for 3 weeks. My neurologist tests included an EMG (very painful electric shocks) which tested for large fiber nerve damage, it was normal. Also an MRI of my head, normal and 2 skin puncture leg biopsies for small fiber neuropathy, still waiting for results. I have since learned from my neurologist that after diabetes, thyroid disease, hypo or hyper, is the 2nd most common cause of neuropathy! Do endocrinologists know this? Until the biopsy test comes back I won't know if I have small fiber neuropathy but tne neurologist thinks that is what I have. Small fiber (nerves) neuropathy is caused by these nerves dying back from the feet upwards. Also, RLS can be caused by SMF so this may have been developing over several years. It may take months or years to repair or not. I have been on thyroxine for about 38 years and maybe this is a long term effect. It's certainly news to me and I don't know how common it is.
I hope the endocrinologist can figure this out.
John
My family has a history of Thyroid problems going back two generations(father/ grandfather). I was diagnosed with a thyroid disorder at age 21 or so. I have been on .0125 mg for like 20 years. I am now 41 years old. In around April, I had blood work done and showed a 4.0 t4 and a 22 TSH. Doctor doubled synthroid to .025mg. Had bloodwork done yesterday and results are: 1.5 T4 and 88 TSH. In the past 12 years I have seen consistent weight gain and attributed it to diet and not working out. Physically - I'm exhausted and could fall asleep during the day. I do have psoriasis as well. In addition I take Lipitor for cholesterol which is in great shape and Sertraline lowest dosage for anxiety. I'm going to an endocronologist as soon as I can get an appointment. My doctor contacted me and told me to goto 2 tabs daily now and 3 as of next week. Please advise of anything I should be doing immediately and any advise you have for me to talk with doctor about. Thanks in advance....
I would have your doctor check your glucose / insulin levels in a 3 hr. fasting blood glucose test. I have inflammation of the thyroid with normal blood levels and also have reactive hypoglycemia. My doctor believes that the reactive hypoglycemia is what caused me to have insulin resistance. Before I was diagnosed with inflammation of the thyroid, reactive hypoglycemia and insulin resistance I had some kind of neuropothy of my hands, arms, legs and feet. Before discovering the insulin resistance she put me on thyroid medicine to see if that helped the pain. It didn't work. She dug a little deeper and found that I had insulin resistance. This is what caused a diabetic like neuropothy. She put me on medication, mild exercise, diet that included 5-6 small meals a day with complex carbs and no sugar. It wouldn't hurt to check your glucose/insulin levels. Hypoglycemia usually accompanies thyroid issues.
MEDICAL PROFESSIONAL
there are likely a few patients out there who cannot convert T4 to T3. However this is not likely to occur suddenly at age 69 and you only had symptoms recently and have been on T4 for decades...which makes me think that if the problem was that of conversion, you would have had neuromuscular problems from low T3 long ago.
Hello Dr. Lupo
Regarding your reply on my question on Hypothyroid Neuropathy?.
Since T3 is the active thyroid hormone, if my T3 has been at or below the normal low for many months, wouldn't I have physical symptoms like aching muscles and burning/tingling feet?
My T3 was 78 in May. When my PCP lowered my levo by 20% this Feb., I experienced extreme fatigue along with the above symptoms. I feel I was under treated for about 4 months and it wasn't until the Cytomel was added 4 weeks ago that the fatique is recently gone.
For patients with no thyroid, where do you try to set their T3 (and T4, TSH), mid-normal?
Do you believe some thyroid patients do not convert T4 to T3 well?
Thank you, John
Regarding your reply on my question on Hypothyroid Neuropathy?.
Since T3 is the active thyroid hormone, if my T3 has been at or below the normal low for many months, wouldn't I have physical symptoms like aching muscles and burning/tingling feet?
My T3 was 78 in May. When my PCP lowered my levo by 20% this Feb., I experienced extreme fatigue along with the above symptoms. I feel I was under treated for about 4 months and it wasn't until the Cytomel was added 4 weeks ago that the fatique is recently gone.
For patients with no thyroid, where do you try to set their T3 (and T4, TSH), mid-normal?
Do you believe some thyroid patients do not convert T4 to T3 well?
Thank you, John
MEDICAL PROFESSIONAL
Reverse T3 is not helpful.
With this TSH and T4, it is hard to conclude neuropathy is due to hypothyroidism. Usually that is a more severe and obvious hypothyroidism that has gone untreated.
Combination treatment with cytomel (T3) and T4 is reasonable - but TSH should be kept in target range (0.5-2.5 in most cases). This requires lowering T4 dose when the cytomel is introduced/increased. In general, 5mcg of T3 has the potency of 20mcg of T4.
Would see a neurologist to evaluate neuropathy.
With this TSH and T4, it is hard to conclude neuropathy is due to hypothyroidism. Usually that is a more severe and obvious hypothyroidism that has gone untreated.
Combination treatment with cytomel (T3) and T4 is reasonable - but TSH should be kept in target range (0.5-2.5 in most cases). This requires lowering T4 dose when the cytomel is introduced/increased. In general, 5mcg of T3 has the potency of 20mcg of T4.
Would see a neurologist to evaluate neuropathy.
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