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(long post) Switched to NP thyroid from Levo
I am new to this community and this is the first time I've posted, there seems to be very good information here so I am hoping to get some good insight. I was hyperthyroid originally and I had RAI treatment about 4 years ago due to a very enlarged goiter (my understanding was caused by Graves disease).
It reversed to hypothyroid and I have been on levothyroxine since the RAI and my primary physician is who has been managing my medication, and by managing it, I mean he was going by my TSH levels and free thyroxine index and hasn't adjusted my dosage in quite sometime now. He always says the tests are "normal". I was never explained or given any information as to what I should or should not eat, I was just told I would have to take thyroid hormones the rest of my life. I kept gaining weight and slowly felt myself losing energy almost to the point where i've gone to bed as soon as I get home from work. I have discussed my weight and symptoms with my PCP numerous times, he’s put me on phentermine & Qsymia for weight loss, neither worked, even walking 2-3 miles a day up and down a bridge and eating low carb, high protein, that didn't help, maybe just prevented me from gaining more. Also I complained about depression which I have never had in my life so now I'm on an anti-depressant. Getting really fed up with not being able to lose weight and talking to my doctors has been no help. I feel like the pillsbury dough girl or an oversized marshmallow! I don't even want to go out because people ask me if I'm pregnant or when I'm due!! It's awful!
I talked to my OB-gyn back in June about how I was feeling and requested to have my hormone levels checked for hormonal imbalance (pre-menopause) because I began suffering from night sweats, hot flashes, memory loss, etc which seemed to me was just me getting older and just seemed to just get worse. My ob-gyn said I probably wouldn’t have any hormonal balance show up on the tests and that my diet was to blame and gave me a recipe for a daily smoothie. One of the ingredients being kelp or spinach (which I find out is not good for hypothyroidism), so of course I started making them to replace my breakfast. Obviously didn't help my situation. I feel like no one will help me!
I recently accidentally ran across hypothyroidmom.com on facebook after reading a very interesting article and discovered so much information that would've really been useful to have known all this time! I couldn’t believe that all these issues were probably due to my thyroid being sluggish! I trusted my doctor to be looking out for me! Last time I went to him, I complained about the pain in my lower back hurting, I’ve never had any injuries but when I get up from sitting I am so stiff and my lower back and hips hurt so bad as well as my ankles. When I walk at a good pace, my lower back feels like it's going to just break in half and it's pretty painful. So after gathering all this information, I requested a referral to see an endocrinologist, the few endo’s we have that accepts my insurance all required a doctor to doctor referral (even tho my insurance doesn’t require a referral) so after pulling some teeth my PCP reluctantly gave me one however out of the handful of options, the soonest I could get in for is Nov 30th so I decided since I was anxious to try Armour Thyroid based on the positive results others have had with it, made an appointment with my PCP to discuss changing the medicine in the meantime until I can see the endo.
I pulled up all my labwork results for the past 2 years and tried to understand them (which really I couldn’t) and requested a full thyroid panel blood test which ultimately only tested metabolic Panel w/eGFR, T4 free, lipid panel & T3 free. He did not test for negative T3, (or I don’t recognize it in my lab results)
So when I saw him this past Friday I went in explaining what my symptoms are which I had my list ready so I didn’t leave anything out. He determined that because my labs were “normal” there could be other causes for my issues and sent me for an xray for my back (still waiting on results). I asked if I could try Armour Thyroid and he seemed to try very hard to change my mind, including stating that most people don’t do well on it and that he can up my levothyroxine dose. I asked him if I could give the armour thyroid a try, so reluctantly he provided me the prescription for NP thyroid, not sure if that's what he prescribed or if they consider it the
generic version" I can't really find the answer out to that. Also asked him for full thyroid panel of bloodwork and he says it’s only necessary to check the TSH levels and those are fine *sigh* It's not like it is an inconvenience for him to request the labwork, and it doesn't cost him anything!
So trying to figure out a pattern to my labs I really couldn’t understand them. I started the NP Saturday (i decided to set an alarm to take it at 3am just to ensure it has plenty of time to work on an empty stomach for 4 hours before and after I take the RX. The first couple days on it I was so tired I couldn’t keep my eyes open, I had a bit of drowsy today but not as bad. I’m not sure if anyone can help me really understand my results, but thought I would post them in case anyone can add feedback? It seems as though as my free thyroxine index goes down the worse I feel but my TSH levels are all over the place.
8/19/2013 TSH, serum 0.065 u[iU]/mL (*0.270-4.200)
8/19/2013 free thyroxine index 1.46 ng/ dl (*0.76-1.70)
6/12/2014 TSH, serum 0.247 u[iU]/mL (*0.270-4.200)
6/12/2014 free thyroxine index 1.77 ng/ dl (*0.76-1.70)
7/18/2014 TSH, serum 0.448 u[iU]/mL (*0.270-4.200)
7/18/2014 free thyroxine index 1.19 ng/ dl (0.76-1.70)
12/23/2014 TSH, serum 2.510 u[iU]/mL (*0.270-4.200)
12/23/2014 free thyroxine index 0.92 ng/ dl (*0.76-1.70)
05/15/2015 TSH, serum 2.300 u[iU]/mL (*0.270-4.200)
05/15/2015 free thyroxine index 0.98 ng/ dl (*0.76-1.70)
08/28/2015 T3 Free 2.2 pg/mL (*2.3-4.2)
08/28/2015 TSH, serum 1.960 u[iU]/mL (*0.270-4.200)
08/28/2015 free thyroxine index 0.99 ng/ dl (*0.76-1.70)
So now that I know I shouldn't have any SOY and that it's recommended to stay close to a gluten free diet I have made the adjustments and hoping with the combination of knowing what foods to avoid, which ones are healthy and taking NP thyroid I can begin to lose some of this weight but is there anything out there that can help increase my energy levels and help with my back and leg pain? Any supplements or exercises? Any help will be greatly appreciated. I've also run across conflicting information on if I should supplement iodine.
Sorry for the long post I just figured it would be best to provide all the information for a clear picture, since my doctor won't listen I'm hoping to find relief until I can see the endo end of November.
It reversed to hypothyroid and I have been on levothyroxine since the RAI and my primary physician is who has been managing my medication, and by managing it, I mean he was going by my TSH levels and free thyroxine index and hasn't adjusted my dosage in quite sometime now. He always says the tests are "normal". I was never explained or given any information as to what I should or should not eat, I was just told I would have to take thyroid hormones the rest of my life. I kept gaining weight and slowly felt myself losing energy almost to the point where i've gone to bed as soon as I get home from work. I have discussed my weight and symptoms with my PCP numerous times, he’s put me on phentermine & Qsymia for weight loss, neither worked, even walking 2-3 miles a day up and down a bridge and eating low carb, high protein, that didn't help, maybe just prevented me from gaining more. Also I complained about depression which I have never had in my life so now I'm on an anti-depressant. Getting really fed up with not being able to lose weight and talking to my doctors has been no help. I feel like the pillsbury dough girl or an oversized marshmallow! I don't even want to go out because people ask me if I'm pregnant or when I'm due!! It's awful!
I talked to my OB-gyn back in June about how I was feeling and requested to have my hormone levels checked for hormonal imbalance (pre-menopause) because I began suffering from night sweats, hot flashes, memory loss, etc which seemed to me was just me getting older and just seemed to just get worse. My ob-gyn said I probably wouldn’t have any hormonal balance show up on the tests and that my diet was to blame and gave me a recipe for a daily smoothie. One of the ingredients being kelp or spinach (which I find out is not good for hypothyroidism), so of course I started making them to replace my breakfast. Obviously didn't help my situation. I feel like no one will help me!
I recently accidentally ran across hypothyroidmom.com on facebook after reading a very interesting article and discovered so much information that would've really been useful to have known all this time! I couldn’t believe that all these issues were probably due to my thyroid being sluggish! I trusted my doctor to be looking out for me! Last time I went to him, I complained about the pain in my lower back hurting, I’ve never had any injuries but when I get up from sitting I am so stiff and my lower back and hips hurt so bad as well as my ankles. When I walk at a good pace, my lower back feels like it's going to just break in half and it's pretty painful. So after gathering all this information, I requested a referral to see an endocrinologist, the few endo’s we have that accepts my insurance all required a doctor to doctor referral (even tho my insurance doesn’t require a referral) so after pulling some teeth my PCP reluctantly gave me one however out of the handful of options, the soonest I could get in for is Nov 30th so I decided since I was anxious to try Armour Thyroid based on the positive results others have had with it, made an appointment with my PCP to discuss changing the medicine in the meantime until I can see the endo.
I pulled up all my labwork results for the past 2 years and tried to understand them (which really I couldn’t) and requested a full thyroid panel blood test which ultimately only tested metabolic Panel w/eGFR, T4 free, lipid panel & T3 free. He did not test for negative T3, (or I don’t recognize it in my lab results)
So when I saw him this past Friday I went in explaining what my symptoms are which I had my list ready so I didn’t leave anything out. He determined that because my labs were “normal” there could be other causes for my issues and sent me for an xray for my back (still waiting on results). I asked if I could try Armour Thyroid and he seemed to try very hard to change my mind, including stating that most people don’t do well on it and that he can up my levothyroxine dose. I asked him if I could give the armour thyroid a try, so reluctantly he provided me the prescription for NP thyroid, not sure if that's what he prescribed or if they consider it the
generic version" I can't really find the answer out to that. Also asked him for full thyroid panel of bloodwork and he says it’s only necessary to check the TSH levels and those are fine *sigh* It's not like it is an inconvenience for him to request the labwork, and it doesn't cost him anything!
So trying to figure out a pattern to my labs I really couldn’t understand them. I started the NP Saturday (i decided to set an alarm to take it at 3am just to ensure it has plenty of time to work on an empty stomach for 4 hours before and after I take the RX. The first couple days on it I was so tired I couldn’t keep my eyes open, I had a bit of drowsy today but not as bad. I’m not sure if anyone can help me really understand my results, but thought I would post them in case anyone can add feedback? It seems as though as my free thyroxine index goes down the worse I feel but my TSH levels are all over the place.
8/19/2013 TSH, serum 0.065 u[iU]/mL (*0.270-4.200)
8/19/2013 free thyroxine index 1.46 ng/ dl (*0.76-1.70)
6/12/2014 TSH, serum 0.247 u[iU]/mL (*0.270-4.200)
6/12/2014 free thyroxine index 1.77 ng/ dl (*0.76-1.70)
7/18/2014 TSH, serum 0.448 u[iU]/mL (*0.270-4.200)
7/18/2014 free thyroxine index 1.19 ng/ dl (0.76-1.70)
12/23/2014 TSH, serum 2.510 u[iU]/mL (*0.270-4.200)
12/23/2014 free thyroxine index 0.92 ng/ dl (*0.76-1.70)
05/15/2015 TSH, serum 2.300 u[iU]/mL (*0.270-4.200)
05/15/2015 free thyroxine index 0.98 ng/ dl (*0.76-1.70)
08/28/2015 T3 Free 2.2 pg/mL (*2.3-4.2)
08/28/2015 TSH, serum 1.960 u[iU]/mL (*0.270-4.200)
08/28/2015 free thyroxine index 0.99 ng/ dl (*0.76-1.70)
So now that I know I shouldn't have any SOY and that it's recommended to stay close to a gluten free diet I have made the adjustments and hoping with the combination of knowing what foods to avoid, which ones are healthy and taking NP thyroid I can begin to lose some of this weight but is there anything out there that can help increase my energy levels and help with my back and leg pain? Any supplements or exercises? Any help will be greatly appreciated. I've also run across conflicting information on if I should supplement iodine.
Sorry for the long post I just figured it would be best to provide all the information for a clear picture, since my doctor won't listen I'm hoping to find relief until I can see the endo end of November.
Best Answer
I sent you a PM with info. To access, just click on your name and then from your personal page click on messages.
Hello gimel, I also live in Melbourne and am really frustrated with the treatment I'm receiving from my endo dr, could you please PM me with info on a recommendation for someone who will work with me on improving my symptoms
Thank You
Thank You
I just sent you a PM with info. To access, just click on your name and then from your personal page, click on messages.
Hello,
I, too, live in Brevard County and have actually done OK on just synthroid for many years, but since last year, things are just not right - weight gain, tired all the time, heart palpitations, etc. - feel like I've aged about 10 years in the past 18 months. Also, feel like my balance is off.
I would LOVE the name of the doctor that is in Melbourne that works with hypothyroid patients. I'm out of the country right now, but have a place near me in Merritt Island that will do the T3 and T4 tests without a doctor's order and will do those as soon as I get home.
I, too, live in Brevard County and have actually done OK on just synthroid for many years, but since last year, things are just not right - weight gain, tired all the time, heart palpitations, etc. - feel like I've aged about 10 years in the past 18 months. Also, feel like my balance is off.
I would LOVE the name of the doctor that is in Melbourne that works with hypothyroid patients. I'm out of the country right now, but have a place near me in Merritt Island that will do the T3 and T4 tests without a doctor's order and will do those as soon as I get home.
If you are interested I have the name of a doctor in Melbourne that has been recommended by thyroid patients.
That's what I thought too, I figured if my levo dose was too low to begin with then the conversion is going to be similar. I live in Brevard County and there is really not many doctors here so it's really hard to get in. You have no idea how helpful your information has been for me. I wrote down everything so that I can take it with me to my doctor appointment. I called today to switch my PCP to a doctor that was referred by a friend of mine who states she really listens to what you tell her and wants the best care for her patients so I see her on Oct 13th. Gives me a little hope. I will request a complete lab panel to be done with all recommended tests. I'm sure she will increase the dose as required once she reviews the appropriate tests. Thank you.
As I suspected, your original dosage is not nearly enough for a hypo patient who has no thyroid gland function after RAI. In addition, the switch to NP 60 is not an equivalent amount of med. Conversion charts show that it is, but in reality one grain of NP is more like 70 mcg of T4 med. So you got shortchanged there also.
Just in case we could recommend a doctor in your area, where are you located?
Just in case we could recommend a doctor in your area, where are you located?
2 Comments
Can you recommend someone in the Denver, CO metro area that will listen to how I feel versus going off of TSH. They don't care how I feel and I have really been struggling with weight loss. I cut out all sugar, grains and dairy and still not even 1/2 an oz of weight loss. please help I am at my wits end after RAI.
I just sent you a PM with some info. To access, just click on your name and then from your personal page click on messages.
Thank you Red Star,I will grab iodine supplements this weekend, I just started taking B-12 and will see where my other levels are and supplement as needed. Will try to have all this tested in the next 2 weeks
Thank you for the info, I an planning on switching my doctor and trying to get the proper tests run. I was on levothyroxine 100mcg and he put me on NP 60. It helps to know what I am looking for and what to request now! Glad I found this site too!
You don't have to eliminate goitrogen from your diet but just eat them in moderation. Iodine is essential in the diet and not just for thyroid hormone production so make sure you are taking at least the RDA for iodine. You might find you feel better eating gluten free. Just make sure you avoid the high added sugar gluten free products. From your symptoms and labs it's clear you need a good tweak in your medication. I know it's frustrating but it does get better. :)
Your doctor seems clueless about testing and treating hypothyroidism. When already taking thyroid meds, TSH is basically a wasted test. It means nothing. Hypo patients taking thyroid med often find that their TSH becomes suppressed before thyroid hormone levels become high enough to relieve symptoms. Also, the Free Thyroxine Index is outdated and superseded by Free T4. The doctor should be testing both of the biologically active thyroid hormones, Free T4 and Free T3 every time you go for tests. Scientific studies have shown that Free T3 actually correlates best with hypo symptoms while Free T4 and TSH did not correlate at all. I expect that your symptoms are mainly due to low levels of Free T4 and Free T3.
So when you get tested for Free T4 and Free T3 you want to continue to increase your NP Thyroid as needed to get your Free T4 to the middle of the range and your Free T3 into the upper third of the range, or as necessary to relieve symptoms. Along with that you should test for Vitamin D, B12 and ferritin and supplement as needed to optimize those. D should be about 55-60, B12 in the very upper end of its range and ferritin should be about 70 minimum.
To try and help understand what to expect from your NP Thyroid, what is your daily dose? Also, what was the daily dose of Levo when you made the switch? When did you start on the NP Thyroid?
So when you get tested for Free T4 and Free T3 you want to continue to increase your NP Thyroid as needed to get your Free T4 to the middle of the range and your Free T3 into the upper third of the range, or as necessary to relieve symptoms. Along with that you should test for Vitamin D, B12 and ferritin and supplement as needed to optimize those. D should be about 55-60, B12 in the very upper end of its range and ferritin should be about 70 minimum.
To try and help understand what to expect from your NP Thyroid, what is your daily dose? Also, what was the daily dose of Levo when you made the switch? When did you start on the NP Thyroid?
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