Aa
Did anyone feel any of these symptons prior to meds?
Hi All,
I've done a lot of reading through all these posts... found there are lots of similarities that I have been experiencing. My twist is that I have been experiencing most of these things "prior" to taking medications.
Short story... I went to see my family doc after my gyno suggested I go see him for just a "regular check up" where he'll take blood and run specific tests. He suggested I do this because I had complained for the third time that I am unable to take the calcium pills he recommends because I experience tremendous bone pain after taking them. My gyno said the calcium shouldn't do this... but indeed it did.
So I went to see my family doc. While in his office I explained everything... If I took calcium pills my bones would slowly begin to hurt but would stop after stopping taking it. However, after the third attempt of taking calcium pills, I continued even after feeling some bone pain and by weeks end, I could not get out of bed! I felt like I aged 20 years... I'm 43. This last time stopping the calcium, didn't stop the bone pain... it continued, some days worse than others. I also explained that even while on hormone replacement, I've additionally been experiencing increased hair loss, weak/brittle nails, extreme dry skin, trouble using my hands/pain in hands and fingers, change in skin/complection, always feeling tired and all of these things, especially the bone pain, were beginning to make me feel depressed. He consoled me, telling me that I'm too young for osteo and that I am generally in good health, young and active. He assured me that we would get to the bottom of it all. He didn't want to diagnose me until after first blood work...
Blood work came back with vitamin D level extrememly low... 6.9 (he said he wants me between 30 - 100). Also, my thyroid TSH level came back at 9.6 (he said it wasn't really bad but said he didn't like where it appears to be headed). So he called in a presciption for levothyroxin .25 mcg and 1000 iuc vitamin D "to start" and ordered me to schedule additional blood work 4 weeks later. Started taking vitamin D and levo every morning since Jan 15, 2012... near two weeks. After the first week, the positives were immediate change in skin and nails. The negatives are some new things like headaches and ichy skin around my private area as well as all the original feelings still there... some days worse than others and some moments of feeling really good. I hoped for immediate fix but now expecially after reading realize it will be slow and measured by my doctor.
Oddly, even though I can relate with mostly everything on these posts, I didn't see anyone experiencing the symptons prior to taking levo or any meds. Anyone?
Patiently awaiting,
angleslms
I've done a lot of reading through all these posts... found there are lots of similarities that I have been experiencing. My twist is that I have been experiencing most of these things "prior" to taking medications.
Short story... I went to see my family doc after my gyno suggested I go see him for just a "regular check up" where he'll take blood and run specific tests. He suggested I do this because I had complained for the third time that I am unable to take the calcium pills he recommends because I experience tremendous bone pain after taking them. My gyno said the calcium shouldn't do this... but indeed it did.
So I went to see my family doc. While in his office I explained everything... If I took calcium pills my bones would slowly begin to hurt but would stop after stopping taking it. However, after the third attempt of taking calcium pills, I continued even after feeling some bone pain and by weeks end, I could not get out of bed! I felt like I aged 20 years... I'm 43. This last time stopping the calcium, didn't stop the bone pain... it continued, some days worse than others. I also explained that even while on hormone replacement, I've additionally been experiencing increased hair loss, weak/brittle nails, extreme dry skin, trouble using my hands/pain in hands and fingers, change in skin/complection, always feeling tired and all of these things, especially the bone pain, were beginning to make me feel depressed. He consoled me, telling me that I'm too young for osteo and that I am generally in good health, young and active. He assured me that we would get to the bottom of it all. He didn't want to diagnose me until after first blood work...
Blood work came back with vitamin D level extrememly low... 6.9 (he said he wants me between 30 - 100). Also, my thyroid TSH level came back at 9.6 (he said it wasn't really bad but said he didn't like where it appears to be headed). So he called in a presciption for levothyroxin .25 mcg and 1000 iuc vitamin D "to start" and ordered me to schedule additional blood work 4 weeks later. Started taking vitamin D and levo every morning since Jan 15, 2012... near two weeks. After the first week, the positives were immediate change in skin and nails. The negatives are some new things like headaches and ichy skin around my private area as well as all the original feelings still there... some days worse than others and some moments of feeling really good. I hoped for immediate fix but now expecially after reading realize it will be slow and measured by my doctor.
Oddly, even though I can relate with mostly everything on these posts, I didn't see anyone experiencing the symptons prior to taking levo or any meds. Anyone?
Patiently awaiting,
angleslms
Maybe check your parathyroids.
I still have bone pains but I have been thyroid medicaion for 18 yrs so it could be from the medication.
I have also had low Vid D, in fact on presciption of 500000 iu now once a week with my daily 2000 iu daily.
But look into parathyroid for bone pain, but your TSH was high in my opinion. ...
I still have bone pains but I have been thyroid medicaion for 18 yrs so it could be from the medication.
I have also had low Vid D, in fact on presciption of 500000 iu now once a week with my daily 2000 iu daily.
But look into parathyroid for bone pain, but your TSH was high in my opinion. ...
i've had the weight gain in the mid section espeically and tingling in one of my finger tips. I haven't been diagnosed just yet but have been put on the levothyroxin and vitiman D by my doc's orders.
My assumption is that my doc may increase the doses BUT my inteligence tells me anything is possible at the point after he gets results of new blood work after taking this stuff at this level for 4 weeks....
My assumption is that my doc may increase the doses BUT my inteligence tells me anything is possible at the point after he gets results of new blood work after taking this stuff at this level for 4 weeks....
Any relationship between calcium and bone pain is way over my head. I did some searching to see if I could find anything. Following is a quote from the only site I saw where it discussed at all.
"Calcium is in fact an important ion involved in neurotransmission. It is not likely that a reduced intake would affect nerve pain. This is because the absorption of calcium depends in part on several factors; co-administration of vitamin D, adequate function of the parathyroid gland and related biochemical mechanisms, and the body's need for calcium. Also, if calcium is present at the end of a nerve fiber, it doesn't simply stimulate a nerve because it is there. There is a special channel present that opens calcium in order to stimulate a nerve. A chemical known as glutamate must first open that channel. So,simply ingesting more calcium is not likely enough to cause neuropathic pain. It is possible that you could have increased bone pain with the addition of calcium plus Fosamax, because you could be feeling (what is known as) bone remodeling. This is the activity that is occurring as calcium is replaced on the bone.
About suitable therapy; it depends of course on your gender. I'll assume you are female, since you mention Evista. If you have been diagnosed with osteoporosis, it is almost essential that you are taking Fosamax (alondronate). Studies have shown that this drug over time will actually increase the bone density. Each 5 years past menopause (without estrogen replacement) makes osteoporosis more difficult to treat, since the baseline bone density you can reach with treatment is reduced. Either estrogen replacement or Evista are good choices in prevention and progression of osteoporosis in postmenopausal women. Evista may also protect against uterine and breast cancer. If you don't have true osteoporosis, and you are headed in that direction (osteopenia), then estrogen (or Evista) therapy is more appropriate for prevention, than the addition of Fosamax. At the point of osteopenia, Fosamax may be used at reduced doses for prevention of the progression to osteoporosis.
Best of Health,
Jeffrey Fudin, PharmD
From your symptoms, and your very limited test results, I'm sure that you need increases in your thyroid meds, to achieve levels of the biologically active thyroid hormones, Free T3 and Free T4, adequate to relieve symptoms. Symptom relief is all important, not just test results, especially TSH. I say that because TSH is a pituitary hormone that is supposed to reflect the levels of thyroid hormones. In actuality TSH does not correlate well with either Free T3 or Free T4, much less with symptoms.
So each time you go in to the doctor, you should make sure they test you for Free T3 and Free T4. If the doctor resists and makes excuses that it is not necessary, just insist on it and don't take no for an answer. It is that important, because Free T3 largely regulates metabolism and many other body functions. Scientific studies have also shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate.
A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Again, symptom relief is all important, not just test results. You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance. The letter is sent to the PCP of the patient to help guide treatment.
http://hormonerestoration.com/files/ThyroidPMD.pdf
In the letter please take special note of this statement.
"TSH-based thyroidology is an unjustified faith in the infallibility of the hypothalamic-pituitary axis. One must instead base the diagnosis and dosing on symptoms first, and on the free T4 and free T3 levels second."
So when you see your doctor I suggest that you might want to give him a copy of the letter and say that you would like to be treated clinically, as described in the letter. If the doctor has a problem with clinical treatment and prescribing T3 meds, when necessary, then you need to find a good thyroid doctor that will do so.
One other point is that your Vitamin D is extremely low, which makes me wonder if the pain/calcium issue could be related to that in any way. At any rate, you really need to get your D up over the middle of the range. Don't hesitate to ask your doctor to increase your dosage. Also, I suggest that you request a full test panel for iron anemia, as well. From your symptoms, and your TSh, it would also be good to find out if Hashimoto's Thyroiditis is the cause of your hypothyroidism. Those tests are for the thyroid antibodies, TPO ab and TG ab.
"Calcium is in fact an important ion involved in neurotransmission. It is not likely that a reduced intake would affect nerve pain. This is because the absorption of calcium depends in part on several factors; co-administration of vitamin D, adequate function of the parathyroid gland and related biochemical mechanisms, and the body's need for calcium. Also, if calcium is present at the end of a nerve fiber, it doesn't simply stimulate a nerve because it is there. There is a special channel present that opens calcium in order to stimulate a nerve. A chemical known as glutamate must first open that channel. So,simply ingesting more calcium is not likely enough to cause neuropathic pain. It is possible that you could have increased bone pain with the addition of calcium plus Fosamax, because you could be feeling (what is known as) bone remodeling. This is the activity that is occurring as calcium is replaced on the bone.
About suitable therapy; it depends of course on your gender. I'll assume you are female, since you mention Evista. If you have been diagnosed with osteoporosis, it is almost essential that you are taking Fosamax (alondronate). Studies have shown that this drug over time will actually increase the bone density. Each 5 years past menopause (without estrogen replacement) makes osteoporosis more difficult to treat, since the baseline bone density you can reach with treatment is reduced. Either estrogen replacement or Evista are good choices in prevention and progression of osteoporosis in postmenopausal women. Evista may also protect against uterine and breast cancer. If you don't have true osteoporosis, and you are headed in that direction (osteopenia), then estrogen (or Evista) therapy is more appropriate for prevention, than the addition of Fosamax. At the point of osteopenia, Fosamax may be used at reduced doses for prevention of the progression to osteoporosis.
Best of Health,
Jeffrey Fudin, PharmD
From your symptoms, and your very limited test results, I'm sure that you need increases in your thyroid meds, to achieve levels of the biologically active thyroid hormones, Free T3 and Free T4, adequate to relieve symptoms. Symptom relief is all important, not just test results, especially TSH. I say that because TSH is a pituitary hormone that is supposed to reflect the levels of thyroid hormones. In actuality TSH does not correlate well with either Free T3 or Free T4, much less with symptoms.
So each time you go in to the doctor, you should make sure they test you for Free T3 and Free T4. If the doctor resists and makes excuses that it is not necessary, just insist on it and don't take no for an answer. It is that important, because Free T3 largely regulates metabolism and many other body functions. Scientific studies have also shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate.
A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Again, symptom relief is all important, not just test results. You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance. The letter is sent to the PCP of the patient to help guide treatment.
http://hormonerestoration.com/files/ThyroidPMD.pdf
In the letter please take special note of this statement.
"TSH-based thyroidology is an unjustified faith in the infallibility of the hypothalamic-pituitary axis. One must instead base the diagnosis and dosing on symptoms first, and on the free T4 and free T3 levels second."
So when you see your doctor I suggest that you might want to give him a copy of the letter and say that you would like to be treated clinically, as described in the letter. If the doctor has a problem with clinical treatment and prescribing T3 meds, when necessary, then you need to find a good thyroid doctor that will do so.
One other point is that your Vitamin D is extremely low, which makes me wonder if the pain/calcium issue could be related to that in any way. At any rate, you really need to get your D up over the middle of the range. Don't hesitate to ask your doctor to increase your dosage. Also, I suggest that you request a full test panel for iron anemia, as well. From your symptoms, and your TSh, it would also be good to find out if Hashimoto's Thyroiditis is the cause of your hypothyroidism. Those tests are for the thyroid antibodies, TPO ab and TG ab.
a lot of really good information. I am extremely new to this and it will take me several attempts to ingest all of it... all i know for sure is that my vitamin d is way too low and it appears based on medicine prescribed that i may have hypothyroidism. From what I've read, my low vitamin d level may be a contributor to whatever thyroid issue I actually have.
I plan on finding out for sure, but I THINK my doctor may have made mention to T3 or something that sounded like it. When I go back to see in beginning of February, I will make sure I understand more why he put me on the levothyroxin and what my free T3 and free T4 results where. I had many tests run, including iron to see if I was anemic... everything came back good except for my vitamin D and my doc's concern about my thyroid function.
I will keep posting and checking here... this is a great place to connect with others experiencing the same issues.
angelslms
I plan on finding out for sure, but I THINK my doctor may have made mention to T3 or something that sounded like it. When I go back to see in beginning of February, I will make sure I understand more why he put me on the levothyroxin and what my free T3 and free T4 results where. I had many tests run, including iron to see if I was anemic... everything came back good except for my vitamin D and my doc's concern about my thyroid function.
I will keep posting and checking here... this is a great place to connect with others experiencing the same issues.
angelslms
I started synthroid 25mcg beginning of Dec. After 2 days I got headaches, and had to take half and built up to 25mcg (my doc said to take one alternate days initially as he thought I was borderline hypo but allowed me meds because of my symptoms).
The specialist Dr Lupo on the Thyroid Nodules/Cancer forum said that increases take about 2 weeks for your body to adjust.. A friend of mine has been on synthroid for years and said it takes a couple of weeks for her to adjust to every increase. You sound like you're doing well and congrats on getting the diagnosis (I totally relate to the some days good, some days hypo symptomatic), but most of the time I think I'm winning. Good luck!
The specialist Dr Lupo on the Thyroid Nodules/Cancer forum said that increases take about 2 weeks for your body to adjust.. A friend of mine has been on synthroid for years and said it takes a couple of weeks for her to adjust to every increase. You sound like you're doing well and congrats on getting the diagnosis (I totally relate to the some days good, some days hypo symptomatic), but most of the time I think I'm winning. Good luck!
COMMUNITY LEADER
It actually takes approx 4-6 weeks for T4 med (levo, synthroid, etc) to reach full potential in the blood.
Most of the symptoms you are describing are those of being hypo and should start going a way, once you've been on the levo for a while.
I agree with gimel that you need to be sure to have the FT3 and FT4 tested every time you have blood work.
I also agree that should have parathyroids checked. Those are the glands that control calcium, whose job it is to control electrical impulses throughout the body. You might check out www.parathyroid.com, which gives very comprehensive information about parathyroid disease.
I'd also strongly suggest that you get vitamin B12 levels tested, if they weren't already. Vitamin B12 deficiency can cause tingling/numbness in the hands/feet, etc, plus it's another cause of almost debilitating fatigue.
Most of the symptoms you are describing are those of being hypo and should start going a way, once you've been on the levo for a while.
I agree with gimel that you need to be sure to have the FT3 and FT4 tested every time you have blood work.
I also agree that should have parathyroids checked. Those are the glands that control calcium, whose job it is to control electrical impulses throughout the body. You might check out www.parathyroid.com, which gives very comprehensive information about parathyroid disease.
I'd also strongly suggest that you get vitamin B12 levels tested, if they weren't already. Vitamin B12 deficiency can cause tingling/numbness in the hands/feet, etc, plus it's another cause of almost debilitating fatigue.
At 1000IU of vitamin D daily, you could take a long time, if ever, to get your vitamin D levels up to optimal range. The average person begins to store vitamin D at 40 ng/ml (100 nmol/L) and at 50 ng/ml (125 nmol/L) virtually everyone begins to store it for future use. I would be aiming for at least 50ng/mL. One study found 93% with unexplained bone and muscle pain with vitamin D deficiency so bone pain is a very common symptom of vitamin D deficiency.
"Mary Shomon: Why do you feel vitamin D is so important to thyroid sufferers?
Richard Shames, MD: This particular vitamin is so crucial to thyroid function that its status has now been elevated by researchers to co-hormone. We now know that the variability of thyroid to work or not work in your body is dependent upon the presence of Vitamin D, making it not just of benefit, but absolutely essential."
Why is Vitamin D So Important to Thyroid Patients? - About website
"Mary Shomon: Why do you feel vitamin D is so important to thyroid sufferers?
Richard Shames, MD: This particular vitamin is so crucial to thyroid function that its status has now been elevated by researchers to co-hormone. We now know that the variability of thyroid to work or not work in your body is dependent upon the presence of Vitamin D, making it not just of benefit, but absolutely essential."
Why is Vitamin D So Important to Thyroid Patients? - About website
My mother who suffers from a rare autoimmune disease also cannot take calcium. She suffers from osteopenia and needs supplementation but after two wks of taking calcium her joints will literally lock up. We have tried this a few times to make sure it was directly related. I do not know why this occurs in her and neither does her doctors. You are not alone in your battle, stay strong and positive.
"From what I've read, my low vitamin d level may be a contributor to whatever thyroid issue I actually have"
In addition - Did your Dr say that you have Hashimoto as a cause of low thyroid? Did you have the thyroid antibody tests for it?. Not all hypothyroid is Hashimotos' disease, good info to know, as its autoimmune.
A high quality magnesium such as mag glycinate or citrate (not oxide) best taken at night 4 hrs from thyroid med, can help with muscle pain nerve tingling, brain functions (foggy thinking), and digestion. Most people can actually feel the difference.
Many still have symptoms just taking a T4 type of thyroid med like synthroid (levothyroxine).
In addition - Did your Dr say that you have Hashimoto as a cause of low thyroid? Did you have the thyroid antibody tests for it?. Not all hypothyroid is Hashimotos' disease, good info to know, as its autoimmune.
A high quality magnesium such as mag glycinate or citrate (not oxide) best taken at night 4 hrs from thyroid med, can help with muscle pain nerve tingling, brain functions (foggy thinking), and digestion. Most people can actually feel the difference.
Many still have symptoms just taking a T4 type of thyroid med like synthroid (levothyroxine).
Wow, all the comments from everyone really does help... gives you ideas and areas to look into that I am not aware of just yet. Thanks to everyone for reply's...
No, my doc has not said i have Hasimoto. I have only seen him once and he did not want to diagnose me, yet. It is "my" assumption that my current thyroid productivity has been damaged by my loooooooooow vitamin d level in my body for God only knows how long. I may not have hashimoto however my thyroid is not 'norm'. Yes, I believe you don't have to have hashimoto to be hypo. And yes vitamin D is crucial in calcium absorbtion, barb135 is very right.
It is also my assumption that my doc may diagnose me once he gets back my 2nd set of blood work which I'm not due for until two more weeks or so. He may even send me to a specialist at that point as well... don't know. But again, too early for me and all assumption based.
Good news while I wait... headaches are no longer often occuring! Oddly, in the past two days, my appetite has seemed to become less than usual. Not sure if this is relative or not but either way I'm happy about it. I haven't been feeling the "I gotta eat something" feeling for the past two days.
Well, I must get back to work for now! Thanks for all the great info everyone!
No, my doc has not said i have Hasimoto. I have only seen him once and he did not want to diagnose me, yet. It is "my" assumption that my current thyroid productivity has been damaged by my loooooooooow vitamin d level in my body for God only knows how long. I may not have hashimoto however my thyroid is not 'norm'. Yes, I believe you don't have to have hashimoto to be hypo. And yes vitamin D is crucial in calcium absorbtion, barb135 is very right.
It is also my assumption that my doc may diagnose me once he gets back my 2nd set of blood work which I'm not due for until two more weeks or so. He may even send me to a specialist at that point as well... don't know. But again, too early for me and all assumption based.
Good news while I wait... headaches are no longer often occuring! Oddly, in the past two days, my appetite has seemed to become less than usual. Not sure if this is relative or not but either way I'm happy about it. I haven't been feeling the "I gotta eat something" feeling for the past two days.
Well, I must get back to work for now! Thanks for all the great info everyone!
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