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Gained 10 lbs in 1 month on desiccated thyroid
I've had Hashomoto's for 8 years and 8-9 months ago my thyroid went out of whack. I experienced strange symptoms, such weight gain, palpitations and extreme sleepiness but at some point my weight went back to normal. Most of my symptoms went away when I was put on desiccated thyroid and I’ve been on this medication since September. I feel a lot better, but now I’m gaining weight again :(.
The thing is that my test results are pretty normal (except for the tg which is usually negative) and I really don’t get why I’m gaining weight. Over the past month I’ve worked out approx 6 hours per week and my workouts have been relatively intense. I generally eat less than 2000 calories per day. Heck, I’ve been consuming less calories than I was the last time I gained 10+ lbs and I've been putting on weight a lot faster. Based on this calculator: https://www.thecalculatorsite.com/health/bmr-calculator.php I'm supposed to be eating 2000+ calories per day to maintain my normal weight. Something’s definitely off.
Here are my most recent test results, from 2-3 weeks ago:
TSH: 0.05 L (0.3-4.0)
FT3: 3.6 (2.5-5.9), bottom 32%
FT4: 14 (9-19) , right at 50%
TPO: 380 H (<40)
TG: 130 H (<40) <- this antibody was negative in August
Has anyone experienced this? What did you do?
The thing is that my test results are pretty normal (except for the tg which is usually negative) and I really don’t get why I’m gaining weight. Over the past month I’ve worked out approx 6 hours per week and my workouts have been relatively intense. I generally eat less than 2000 calories per day. Heck, I’ve been consuming less calories than I was the last time I gained 10+ lbs and I've been putting on weight a lot faster. Based on this calculator: https://www.thecalculatorsite.com/health/bmr-calculator.php I'm supposed to be eating 2000+ calories per day to maintain my normal weight. Something’s definitely off.
Here are my most recent test results, from 2-3 weeks ago:
TSH: 0.05 L (0.3-4.0)
FT3: 3.6 (2.5-5.9), bottom 32%
FT4: 14 (9-19) , right at 50%
TPO: 380 H (<40)
TG: 130 H (<40) <- this antibody was negative in August
Has anyone experienced this? What did you do?
I recently had my thyroid levels checked.
TSH: 0.4 (0.3-4.3)
Free T4: 8.9L (9-19)
Free T3: 3.1 (2.9-5.6)
Symptoms:
Mild weight gain/moderately slow metabolism on a very healthy diet and with a lot of exercise
Sleepiness
Excessive sleep
Feeling cold all the time
Dry skin
Memory issues
The symptoms used to be a lot worse, so the medication is definitely working. But they're still there. My doctor just upped my dose from 90 mg to 105 mg desiccated thyroid (60 mg in the morning, 45 mg in the afternoon).
TSH: 0.4 (0.3-4.3)
Free T4: 8.9L (9-19)
Free T3: 3.1 (2.9-5.6)
Symptoms:
Mild weight gain/moderately slow metabolism on a very healthy diet and with a lot of exercise
Sleepiness
Excessive sleep
Feeling cold all the time
Dry skin
Memory issues
The symptoms used to be a lot worse, so the medication is definitely working. But they're still there. My doctor just upped my dose from 90 mg to 105 mg desiccated thyroid (60 mg in the morning, 45 mg in the afternoon).
If you feel that 10 is the highest increase you can tolerate, then stick with it; however, you might talk to the doctor about a shorter interval between dose increases. That might work for you.
Thought I had answered, but it didn't show up. Anyway I don't think you are on a "relatively high dose" The reason I say that is that although everyone is different in their requirement of thyroid hormone at which they feel normal, an average thyroid gland produces 94 - 110 mcg of T4 and 10 - 22 mcg of T3 daily. This is approximately equivalent to 2 - 3 grains of desiccated med (120 - 180 mg). When you take into consideration that absorption of the med is only about 85%, this means that to equal the daily average output of a thyroid gland, would take about 140 to 212 mg of desiccated med.
So it seems that you could handle a larger increase than 10 mg, since you will be testing only every 6-8 weeks, which at that rate will take a long time to reach your optimal level.
Be the way, don't pay any attention to your TSH level. As I mentioned previously, there is a difference between a suppressed TSH in the treated state versus a suppressed TSH in the untreated state. In the untreated state our bodies are used to a continuous low flow of thyroid hormone. When you take your daily thyroid med in only one or two doses, it tends to suppress the TSH for a full day. This is the reason for the quote above,"Hypothyroid symptom relief was associated with both a T4 dose giving TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range."
So it seems that you could handle a larger increase than 10 mg, since you will be testing only every 6-8 weeks, which at that rate will take a long time to reach your optimal level.
Be the way, don't pay any attention to your TSH level. As I mentioned previously, there is a difference between a suppressed TSH in the treated state versus a suppressed TSH in the untreated state. In the untreated state our bodies are used to a continuous low flow of thyroid hormone. When you take your daily thyroid med in only one or two doses, it tends to suppress the TSH for a full day. This is the reason for the quote above,"Hypothyroid symptom relief was associated with both a T4 dose giving TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range."
1 Comments
Thank you Gimel. I feel like a 15 mg increase is the maximum my body can handle at a time. It usually helps with my symptoms but often it also makes my heart race for the first few weeks. A 10 mg increase usually works better because it helps with my symptoms but it doesn't make my heart race.
Okay, so assuming your Vitamin D and iron supplements are high enough, that leaves the problem of hypothyroid symptoms, due to the inadequate levels of Free T3 and Free T3. That is not a relatively high dose you are taking. Of course everyone can have different thyroid hormone requirements; however, it is reported that the average thyroid gland produces 94 - 110 mcg of T4 and 10 - 22 mcg of T3 daily. That is equivalent to 2 - 3 grins of desiccated thyroid med, or 120 - 180 mg. Since only about 85% of thyroid med is absorbed, the equivalent amount of thyroid med is approx. 140 - 210 mg. Again this is only based on averages, but I think you can see you have a way to go yet. on dose increases.
Also be aware that TSH means nothing when taking significant doses of thyroid med. The dose cause a spike in T4 and T3 levels and thus tends to suppress TSH for most of the day. Dosage must be enough to relieve symptoms, without being influenced by TSH levels.
Also be aware that TSH means nothing when taking significant doses of thyroid med. The dose cause a spike in T4 and T3 levels and thus tends to suppress TSH for most of the day. Dosage must be enough to relieve symptoms, without being influenced by TSH levels.
1 Comments
Thank you Gimel. I'm a 120-pound girl. The average weight is 150-200 lbs right? Doesn't that mean I should be taking less than the average dose? I honestly don't know how this works.
I usually feel the effects of the medication when it's upped by 10-15 mg. The question is it going to work long term or only for a month or two? I really hope this dose works. I'm broke and I'm currently spending around $100 a month on medication and treatment. A higher dose would cost me even more, sigh.
My doctor upped my dose in spite of the low TSH. I don't think she pays attention to it too much.
I usually feel the effects of the medication when it's upped by 10-15 mg. The question is it going to work long term or only for a month or two? I really hope this dose works. I'm broke and I'm currently spending around $100 a month on medication and treatment. A higher dose would cost me even more, sigh.
My doctor upped my dose in spite of the low TSH. I don't think she pays attention to it too much.
I think your doctor is overly optimistic about the small increase in your dosage. Your FT4 was below range, and your FT3 is at the very bottom of its range. Before further discussion, did you take your thyroid med before the blood draw for those tests? Also, without looking back at prior messages, have you been tested for Vitamin D, B12 and ferritin?
1 Comments
The main reason why we're upping the meds relatively slowly is because I'm deathly afraid of going hyper (I was hyper in the past and had horrible symptoms, a lot worse than hypo). Also, I'm on a relatively high dose (and it's getting pretty expensive. I don't have insurance so I have to pay for it out of pocket).
I didn't take my medication before the blood draw (for over 24 hours). I haven't been tested but I'm taking iron and Vitamin D supplements and have been taking them for a while now. My B12 always comes back high-normal.
I didn't take my medication before the blood draw (for over 24 hours). I haven't been tested but I'm taking iron and Vitamin D supplements and have been taking them for a while now. My B12 always comes back high-normal.
I recently had my thyroid levels checked.
TSH: 0.25 (0.34-5.0)
FT4: 9 (12-22)
FT3: 3.4 (3.4-6)
Lots of hypo symptoms (severe memory issues, very dry/flaky skin, Hashimoto's face, slow metabolism, excessive sleep).
I'm on desiccated thyroid. My doctor just upped my dose from 80 mg to 90 mg (60 mg in the morning, 30 mg in the afternoon).
TSH: 0.25 (0.34-5.0)
FT4: 9 (12-22)
FT3: 3.4 (3.4-6)
Lots of hypo symptoms (severe memory issues, very dry/flaky skin, Hashimoto's face, slow metabolism, excessive sleep).
I'm on desiccated thyroid. My doctor just upped my dose from 80 mg to 90 mg (60 mg in the morning, 30 mg in the afternoon).
Hi Jenn. glad you are doing better. You do need to continue to increase your FT4 and FT3 to optimal levels. I know you are concerned about what you referred to as hyper symptoms, but I wondered what made you think it was hyper, instead of hypo symptoms?
1 Comments
I was hyper a long time ago before I was diagnosed with Hashimoto's (it was probably Hashitoxicosis). I didn't even suspect that I had thyroid issues until my doctor told me I did a while later. I had all the symptoms and they were very different from the symptoms I experienced when I was hypo (and from the ones I have now). I lost 10 lbs and couldn't gain weight, no matter how hard I tried. I was too skinny. My face looked different, it looked weird and pale. Lots of things made me anxious for no reason. I was depressed. It was horrible. My FT4 was borderline high. My TSH was essentially zero.
My current symptoms are more hypo, I don't feel hyper at all. I don't want to rush anything because upping the dose too fast could potentially make me hyper. My doctor thinks the dose that I'm currently on should be sufficient and that it's just that's it's going to take time until I'm symptom free and in the optimal range. I am progressively getting better. If this dose doesn't get my FT3 and FT4 to the optimal range in a few months and my symptoms stop improving she will up my dose.
My current symptoms are more hypo, I don't feel hyper at all. I don't want to rush anything because upping the dose too fast could potentially make me hyper. My doctor thinks the dose that I'm currently on should be sufficient and that it's just that's it's going to take time until I'm symptom free and in the optimal range. I am progressively getting better. If this dose doesn't get my FT3 and FT4 to the optimal range in a few months and my symptoms stop improving she will up my dose.
Are you currently taking Thyroid medication? If so what are you taking and what is your dose?
I assume that you ARE already on thyroid med.
Are you sure that the T4 levels and ranges are for FREE T4?
The numbers and range look more like what is normally seen for "total T4"
Regardless, You are BELOW or in the basement of BOTH results. And it is no surprise that you feel Hypo.
The Dr's are all wound up and ONLY focusing on TSH which is useless at this point.
The only suggestion I would have at the moment to discuss with your Dr is this. If your thyroid is suppressed which is what the TSH suggests. That is, your thyroid gland is producing little to nothing. With that truth. It would then mean that the Free T4 and Free T3 levels that you are living with are ONLY the result of the medication. And BOTH levels are extremely low or below range. And your symptoms are consistent with HYPO.
So you have 3 very important indicators that you are Hypo. BOTH blood level tests and most importantly your symptoms! These should WAY overpower the useless TSH test.
Put another way. You could ask your Dr's. If you removed the TSH test from the process. And you presented ONLY with the Hypo symptoms AND extremely low or BELOW range thyroid hormone levels. What would be their opinion of your condition, and based on that, would they recommend a dosage increase, or to continue letting you suffer hypo symptoms?
I assume that you ARE already on thyroid med.
Are you sure that the T4 levels and ranges are for FREE T4?
The numbers and range look more like what is normally seen for "total T4"
Regardless, You are BELOW or in the basement of BOTH results. And it is no surprise that you feel Hypo.
The Dr's are all wound up and ONLY focusing on TSH which is useless at this point.
The only suggestion I would have at the moment to discuss with your Dr is this. If your thyroid is suppressed which is what the TSH suggests. That is, your thyroid gland is producing little to nothing. With that truth. It would then mean that the Free T4 and Free T3 levels that you are living with are ONLY the result of the medication. And BOTH levels are extremely low or below range. And your symptoms are consistent with HYPO.
So you have 3 very important indicators that you are Hypo. BOTH blood level tests and most importantly your symptoms! These should WAY overpower the useless TSH test.
Put another way. You could ask your Dr's. If you removed the TSH test from the process. And you presented ONLY with the Hypo symptoms AND extremely low or BELOW range thyroid hormone levels. What would be their opinion of your condition, and based on that, would they recommend a dosage increase, or to continue letting you suffer hypo symptoms?
1 Comments
Thank you flyingfool. Yes. I'm on 75 mg desiccated thyroid (morning: 45mg, afternoon: 30 mg).
These are Canadian reference ranges for FT4. The labs here don't seem to use the same units as they do in the US (and possibly other countries?). I'm not sure why. Canada: pmol/L, US: ng/dL.
I've been on this dose for the past 6 months. My FT4 may be slightly below the low end of the reference range, but it's better than it was 5-6 ago. My FT3 is significantly higher than it was just a few months ago (it was low/very low normal). I also feel better than I did. My doctor says that my TSH is fine. She doesn't think it's too low. Her goal is to get my FT3 and FT4 to the middle of the reference range but she says it's going to take time. She doesn't want to rush it because she knows I'm deathly afraid of going hyper because of my past experiences.
My thyroid is finally stable after over a year of instability. At this point I just want to wait and see what happens because my symptoms are relatively mild and tolerable (which, they weren't before). Hopefully my levels will continue getting better and closer to the optimal ranges overtime.
These are Canadian reference ranges for FT4. The labs here don't seem to use the same units as they do in the US (and possibly other countries?). I'm not sure why. Canada: pmol/L, US: ng/dL.
I've been on this dose for the past 6 months. My FT4 may be slightly below the low end of the reference range, but it's better than it was 5-6 ago. My FT3 is significantly higher than it was just a few months ago (it was low/very low normal). I also feel better than I did. My doctor says that my TSH is fine. She doesn't think it's too low. Her goal is to get my FT3 and FT4 to the middle of the reference range but she says it's going to take time. She doesn't want to rush it because she knows I'm deathly afraid of going hyper because of my past experiences.
My thyroid is finally stable after over a year of instability. At this point I just want to wait and see what happens because my symptoms are relatively mild and tolerable (which, they weren't before). Hopefully my levels will continue getting better and closer to the optimal ranges overtime.
I recently had my thyroid levels checked.
TSH: 0.14 (0.34-5.0)
FT4: 11 (12-22)
FT3: 4 (3.5-6)
Sometimes I still experience some hypo symptoms, but overall I'm doing a lot better than before.
TSH: 0.14 (0.34-5.0)
FT4: 11 (12-22)
FT3: 4 (3.5-6)
Sometimes I still experience some hypo symptoms, but overall I'm doing a lot better than before.
I am somewhat surprised that you seem to be doing pretty well on that dose, which is not even an average daily replacement amount of thyroid med, as discussed previously by telus2. OF course, delaying your med dosage means that your levels are near their low for the day, but your FT4 is at bottom of the range, and your FT3 is only at 31% of its range. Even though everyone can have different levels at which they feel best, both of these levels are lower than many of us have found to be adequate to relieve hypo symptoms. The goal of treatment is to titrate your dosage so that your FT4 and FT3 levels are high enough to relieve hypo symptoms, but without going so far as to create hyper symptoms. Accordingly, I think you could benefit from a small increase in dosage, which I am sure will be a problem with your doctor, due to resultant low TSH. I have discussed all this in prior messages, but I am sending you a PM with further info. To access, click on your name and then from your personal page click on messages.
1 Comments
Thank you Gimel. My thyroid doctor said that for now I'm going to stay on the same dose, because it seems like I'm doing well on it and she thinks that my FT4 levels will probably increase slowly overtime. She also said that my TSH is normal but too low to up my dose because we don't want to do it too fast. We want to give the body time to adjust and if needed we'll up it more in the future. For now it seems stable and relatively symptom free.
I agree with my doctor. I wouldn't want to up my dose right now because I feel fine and I don't want to take unnecessary risks. She's retesting me in 3 months and if I experience symptoms before then I can always make an appointment with her to change my dose.
As far as my TSH goes, my other doctors are the main issue here, not my thyroid doctor. They like to follow the guidelines and we want to keep them happy. My current TSH seems fine, but if it drops any lower they'll probably bug me about it and refer me to a specialist and I really don't want to have to deal with that unless it's absolutely necessary.
I agree with my doctor. I wouldn't want to up my dose right now because I feel fine and I don't want to take unnecessary risks. She's retesting me in 3 months and if I experience symptoms before then I can always make an appointment with her to change my dose.
As far as my TSH goes, my other doctors are the main issue here, not my thyroid doctor. They like to follow the guidelines and we want to keep them happy. My current TSH seems fine, but if it drops any lower they'll probably bug me about it and refer me to a specialist and I really don't want to have to deal with that unless it's absolutely necessary.
Before discussing your latest results, we need to know if you delayed your morning dose of med until after the blood draw for those tests. If not, then what time did you take the med and what time was the blood draw. Even more important, feeling "pretty good" is not definitive enough. Do you have any symptoms at all?
1 Comments
Yes I delayed my morning dose. The last time I took my thyroid medication before the blood draw happened ~26 hours before.
I have relatively mild memory problems (compared to before, my friends used to think I have Alzheimer's -like memory).
Occasional Hashimoto's face.
I have relatively mild memory problems (compared to before, my friends used to think I have Alzheimer's -like memory).
Occasional Hashimoto's face.
Test results:
TSH: 0.29 (0.3-4.0)
Free T3: 3.6 (2.6-5.8)
Free T4: 9 (9-19)
I'm on desiccated thyroid (morning: 45 mg, afternoon 30 mg). My TSH and FT4 FT4 are borderline low. I feel pretty good so I don't know what this means.
TSH: 0.29 (0.3-4.0)
Free T3: 3.6 (2.6-5.8)
Free T4: 9 (9-19)
I'm on desiccated thyroid (morning: 45 mg, afternoon 30 mg). My TSH and FT4 FT4 are borderline low. I feel pretty good so I don't know what this means.
Hi Jenn, I'm in Canada too. On thyroid hormones since 1980's. But really got in to researching thyroid stuff when I got atrial fibrillation a few years ago. I'm just gonna give you a few comments.
It appears that your doctor(s) are making the classic mistake in the way they are using ERFA - that is, ERFA and other natural desiccated thyroid (NDT) products are known to suppress TSH. If TSH is suppressed, your natural thyroid gland will not produce any thyroid hormone, and therefore if you give someone ERFA, you must give them a dose that fully replaces the output of a normal thyroid gland. They do not know this because they did not learn about NDT at doctor school, they only learned about Synthtoid which does not suppress TSH like NDT does.
So here is some ammo for you when next you meet the doctor - a normal functioning natural thyroid gland produces 90 to 100 mcg of T4 every day and around 6 mcg of T3. The 60 mg ERFA that you are taking contains 38 mcg T4 plus 9 mcg T3. It is very easy to see that 60 ERFA is a very long way from a replacement dose and anyone receiving only 60 mg would obviously be hypothyroid.
I presume that you were taking synthroid or similar before starting ERFA. If you don't get anywhere with the doc on upping the ERFA, you might be better off in the short run to revert back to synthroid, somewhere in the 100 to 125 mcg range, while you figure out what to do next.
Re slow release. First, if you go that way, you still need more than what you are getting now. I don't believe that you will find commercially available slow release NDT. The NDT that is in tablets is known to pharmacies as "Thyroid" or "Thyroid USP" or "Desiccated Thyroid USP" (see WIKI). Compounding pharmacies can make "slow release" or "sustained release" capsules for you. Simply phone a local compounding pharmacy and ask them.
Another option is synthroid along with slow release T3. That is what I use. The pharmacy calls the T3 "SR Liothyronine". I went that way after reading the paper cited below; there is a ton of practical advice in this paper.
Hypothyroidism: Optimizing Therapy with Slow-Release Compounded Thyroid Replacement, by Martin Milner, ND., published in International Journal of Pharmaceutical Compounding, July/August 2005.
which can be found here:
http://www.townsendletter.com/FebMarch2007/hypothyroid0207.htm
It appears that your doctor(s) are making the classic mistake in the way they are using ERFA - that is, ERFA and other natural desiccated thyroid (NDT) products are known to suppress TSH. If TSH is suppressed, your natural thyroid gland will not produce any thyroid hormone, and therefore if you give someone ERFA, you must give them a dose that fully replaces the output of a normal thyroid gland. They do not know this because they did not learn about NDT at doctor school, they only learned about Synthtoid which does not suppress TSH like NDT does.
So here is some ammo for you when next you meet the doctor - a normal functioning natural thyroid gland produces 90 to 100 mcg of T4 every day and around 6 mcg of T3. The 60 mg ERFA that you are taking contains 38 mcg T4 plus 9 mcg T3. It is very easy to see that 60 ERFA is a very long way from a replacement dose and anyone receiving only 60 mg would obviously be hypothyroid.
I presume that you were taking synthroid or similar before starting ERFA. If you don't get anywhere with the doc on upping the ERFA, you might be better off in the short run to revert back to synthroid, somewhere in the 100 to 125 mcg range, while you figure out what to do next.
Re slow release. First, if you go that way, you still need more than what you are getting now. I don't believe that you will find commercially available slow release NDT. The NDT that is in tablets is known to pharmacies as "Thyroid" or "Thyroid USP" or "Desiccated Thyroid USP" (see WIKI). Compounding pharmacies can make "slow release" or "sustained release" capsules for you. Simply phone a local compounding pharmacy and ask them.
Another option is synthroid along with slow release T3. That is what I use. The pharmacy calls the T3 "SR Liothyronine". I went that way after reading the paper cited below; there is a ton of practical advice in this paper.
Hypothyroidism: Optimizing Therapy with Slow-Release Compounded Thyroid Replacement, by Martin Milner, ND., published in International Journal of Pharmaceutical Compounding, July/August 2005.
which can be found here:
http://www.townsendletter.com/FebMarch2007/hypothyroid0207.htm
1 Comments
I’ve never been on anything other than Erfa and compounded desiccated thyroid. A year ago I started having horrible palpitations that seemed to be associated with hormones and slow heart rate. They were so bad that they would wake me up at night and wouldn’t let me sleep. I went to various doctors and no one could figure out what was wrong with me.
They ran some tests and all the tests came back “normal” but my FT3 was very close to the bottom. My TSH was >3 and my FT4 was far from optimal. I had all the symptoms of hypothyroid and positive Hashimoto’s antibodies. I did some research and realized that the US and the UK would consider my test results borderline hypo and that my heart palpitations were probably related. I tried to go the MD route but it seemed complicated and it was taking forever. I ended up seeing an ND and doing a trial on desiccated thyroid. Within a month or two my heart PVCs were gone but I still had some hypo symptoms. My body seemed to be reacting very quickly to the point where my naturopath was concerned that I would go hyper. That’s why it’s being upped so slowly.
My naturopath mainly seems to care about my FT3 and FT4 levels and she definitely wants them higher than they are now. The problem is that my family doctor and most MDs I’ve seen are mostly concerned about my TSH level and they won’t do anything that goes against the guidelines. They don’t seem to trust NDs or desiccated thyroid and they really want me to me to see an endocrinologist. I can’t just ignore what they say because they’re the ones sending me for blood work every time my naturopath ups the dose (I can’t afford to pay for blood work out of pocket). How do I convince my doctors that there’s nothing wrong with having a very low TSH when you’re on desiccated thyroid?
They ran some tests and all the tests came back “normal” but my FT3 was very close to the bottom. My TSH was >3 and my FT4 was far from optimal. I had all the symptoms of hypothyroid and positive Hashimoto’s antibodies. I did some research and realized that the US and the UK would consider my test results borderline hypo and that my heart palpitations were probably related. I tried to go the MD route but it seemed complicated and it was taking forever. I ended up seeing an ND and doing a trial on desiccated thyroid. Within a month or two my heart PVCs were gone but I still had some hypo symptoms. My body seemed to be reacting very quickly to the point where my naturopath was concerned that I would go hyper. That’s why it’s being upped so slowly.
My naturopath mainly seems to care about my FT3 and FT4 levels and she definitely wants them higher than they are now. The problem is that my family doctor and most MDs I’ve seen are mostly concerned about my TSH level and they won’t do anything that goes against the guidelines. They don’t seem to trust NDs or desiccated thyroid and they really want me to me to see an endocrinologist. I can’t just ignore what they say because they’re the ones sending me for blood work every time my naturopath ups the dose (I can’t afford to pay for blood work out of pocket). How do I convince my doctors that there’s nothing wrong with having a very low TSH when you’re on desiccated thyroid?
Just sent you a PM with info. To access, just click on your name and then click on messages.
I don't know of any slow release NDT that is readily available. I will do some checking on that. You might be able to locate a compounding pharmacy that could take your NDT and add to it something that would slow the release. I doubt that it could be effective enough to provide continuous release throughout the whole day, but it could be better than current experience.
1 Comments
Thank you Gimel.
There was a study done that showed the effect on TSH levels, from splitting a significant dose of thyroid med into multiple doses. Normal, single doses of T4 med consistently suppressed TSH. By splitting the same dosage amount into 2 doses, it increased TSH levels, except at the higher dosages of 130 - 150 mcg of T4. By splitting the same dose into thirds, there was a further significant increase in TSH levels. So you might consider splitting your med into 3, or even 4 doses taken at different times of the day, to try and avoid the doctor's concern about suppression of TSH. Also you should keep pointing out to them that TSH is only a surrogate test for the actual thyroid hormones. It is your Free T4 and Free TT3 levels that are important.
You might also find useful this study that concluded: "Hypothyroid symptom relief was associated with both a T4 dose giving TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range."
https://www.ncbi.nlm.nih.gov/pubmed/29396968
There was also a study done with rats, which are good surrogates for test purposes: This study concluded that "Only a continuous infusion of T4 and T3 in the
same 6:1 ratio produced by the rat’s thyroid gland restored both serum and tissue levels of T4 and T3 to those of controls without suppressing the TSH." So here again it shows the suppressive effect is not there when there is continuous flow of thyroid hormone instead of a single dose.
You might also find useful this study that concluded: "Hypothyroid symptom relief was associated with both a T4 dose giving TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range."
https://www.ncbi.nlm.nih.gov/pubmed/29396968
There was also a study done with rats, which are good surrogates for test purposes: This study concluded that "Only a continuous infusion of T4 and T3 in the
same 6:1 ratio produced by the rat’s thyroid gland restored both serum and tissue levels of T4 and T3 to those of controls without suppressing the TSH." So here again it shows the suppressive effect is not there when there is continuous flow of thyroid hormone instead of a single dose.
1 Comments
Thank you Gimel. Are sustained release capsules available for NDT? Where and how can I get them? What brands? I feel like that would be a good way to have continuous flow of thyroid medication throughout the day.
Thyroid medication causes TSH to drop, and thus reduces output of natural thyroid hormone. Since serum thyroid levels are the sum of both natural thyroid hormone and any thyroid medication, only when TSH is suppressed below range, and no longer stimulating the thyroid gland, will further increases in thyroid med start to raise your FT4 and FT3 levels as needed to relieve hypothyroid symptoms.
You are not quite there yet, but note that taking significant thyroid med in only one or two doses daily, as compared to a continuous low flow of thyroid hormone in the untreated state, has been shown to cause suppression of TSH. A suppressed TSH when taking thyroid medication should never be diagnosed as hyperthyroidism, unless there are hyperthyroid symptoms due to excessive levels of FT4 and FT3.
As TSH becomes suppressed by the daily dose of thyroid med, the output of natural thyroid hormone is stopped, and the patient will thus need a full daily replacement amount of thyroid hormone from thyroid medication. Since the average normal secretion for euthyroid humans are 94-110 mcg of T4 and 10-22 mcg of T3 daily, that means the average person will need at least 2 grains (120 mg) of desiccated thyroid med, plus an additional amount to account for losses due to absorption being less than 100%. Also, everyone is different in their need for thyroid hormone. So you can see that you are a long way from being on an adequate dosage of medication. This is further evident from your symptoms.
You can find all this info in the paper you previously downloaded and gave to your doctor.
You are not quite there yet, but note that taking significant thyroid med in only one or two doses daily, as compared to a continuous low flow of thyroid hormone in the untreated state, has been shown to cause suppression of TSH. A suppressed TSH when taking thyroid medication should never be diagnosed as hyperthyroidism, unless there are hyperthyroid symptoms due to excessive levels of FT4 and FT3.
As TSH becomes suppressed by the daily dose of thyroid med, the output of natural thyroid hormone is stopped, and the patient will thus need a full daily replacement amount of thyroid hormone from thyroid medication. Since the average normal secretion for euthyroid humans are 94-110 mcg of T4 and 10-22 mcg of T3 daily, that means the average person will need at least 2 grains (120 mg) of desiccated thyroid med, plus an additional amount to account for losses due to absorption being less than 100%. Also, everyone is different in their need for thyroid hormone. So you can see that you are a long way from being on an adequate dosage of medication. This is further evident from your symptoms.
You can find all this info in the paper you previously downloaded and gave to your doctor.
1 Comments
Thank you Gimel. The thing is that my doctors here will probably never be ok with my TSH being completely suppressed (I live in Canada and they follow relatively strict guidelines here). Is there a way to get my FT3 and FT4 to acceptable levels (mid range-ish) without fully suppressing the TSH? (they're probably going to want it >0.5)
UPDATE:
I got my test results a few days ago and my FT4 is still too low. My FT3 is "normal" but it's still very low. I don't get it. My dose was recently upped to 60 mg desiccated thyroid. Why are my levels getting worse? Shouldn't they be getting better? I do feel better.
TSH 1.10 (0.3-5)
FT3 3.6 (3.4-5.9), bottom 8.6%
FT4 9 (12-20) L
I didn't take my medication the day I went in for blood work (I waited 27 hours).
Symptoms:
Nausea (this one's new but it's getting better)
Slow metabolism (I gain weight a lot faster than I used to, but it's significantly better than it was 2-3 months ago)
Mild to moderate memory problems, depending on the day (significantly better than 2-3 months ago)
Dry skin
I sleep slightly more than I used to.
I got my test results a few days ago and my FT4 is still too low. My FT3 is "normal" but it's still very low. I don't get it. My dose was recently upped to 60 mg desiccated thyroid. Why are my levels getting worse? Shouldn't they be getting better? I do feel better.
TSH 1.10 (0.3-5)
FT3 3.6 (3.4-5.9), bottom 8.6%
FT4 9 (12-20) L
I didn't take my medication the day I went in for blood work (I waited 27 hours).
Symptoms:
Nausea (this one's new but it's getting better)
Slow metabolism (I gain weight a lot faster than I used to, but it's significantly better than it was 2-3 months ago)
Mild to moderate memory problems, depending on the day (significantly better than 2-3 months ago)
Dry skin
I sleep slightly more than I used to.
4 Comments
which ndt are you taking? how long were you on the 60 mg dose before testing? from these labs it looks like you will need an increase. Do you have issues with hair loss?
I'm taking Erfa. I've been on 60 mg for about 6 weeks. I had issues with hair loss before, but it was pretty mild (I'm sure some people have it worse when they're hypo) and it's better now.
what did your dr suggest, did he suggest an increase in dose?
My dr increased my dose by 5 mg. We're doing it slowly because I'm deathly afraid of going hyper.
I recently had labs done. Here are the results:
TG: <20 (Ref < 40) Negative this time.
TPO: 770 H (Ref <40) This antibody always comes back high
TSH: 0.5 (ref 0.35-5.0) how is my TSH so low if my thyroid is failing? It should be 20.
FT3: 3.2 L (ref 3.4-6) that’ll explain the weight gain
FT4: 11 L (ref 12-22) that’ll explain the weight gain
Ferritin: 31 (ref 12-109) I’m taking a supplement
I’m on desiccated thyroid (30 mg). I didn’t take it the morning I did the labs (I waited for 26 hours).
My Tg came back negative this time. I’m glad it went back back down but is it normal for the Tg to fluctuate like this? It was positive a month ago.
My TPO basically doubled over the past month. Is this bad?
My FT3 and FT4 are officially too low for the first time ever (overt hypo). Now I know why I put on 10 lbs in 1 month. What’s interesting is that I feel relatively ok. Other than the weight gain and crawling metabolism, most of my hypo symptoms are nearly gone.
I think I finally figured out why I was still having symptoms when my FT3 was close to the middle of the reference range. Turns out that the lab changed the reference range. The low end was changed from 3.1 to 2.6 (most labs have it around 3.5!). I was having horrible symptoms at 3.5 so no, this new reference range doesn’t work Life Labs!
http://www.btf-thyroid.org/information/quick-guides/97-thyroid-function-tests
Based on the reference range they were using before my FT3 was at 16%. It’s better than the 12% I was at before but still significantly lower than the 30% I thought my levels were at. This time I went to a clinic that works with a different lab and surprise surprise my FT3 is really low again (this time it's out of range).
https://thyroidpatients.ca/2019/01/06/abbott-laboratories-reference-range-normalizes-lower-free-t3/
TG: <20 (Ref < 40) Negative this time.
TPO: 770 H (Ref <40) This antibody always comes back high
TSH: 0.5 (ref 0.35-5.0) how is my TSH so low if my thyroid is failing? It should be 20.
FT3: 3.2 L (ref 3.4-6) that’ll explain the weight gain
FT4: 11 L (ref 12-22) that’ll explain the weight gain
Ferritin: 31 (ref 12-109) I’m taking a supplement
I’m on desiccated thyroid (30 mg). I didn’t take it the morning I did the labs (I waited for 26 hours).
My Tg came back negative this time. I’m glad it went back back down but is it normal for the Tg to fluctuate like this? It was positive a month ago.
My TPO basically doubled over the past month. Is this bad?
My FT3 and FT4 are officially too low for the first time ever (overt hypo). Now I know why I put on 10 lbs in 1 month. What’s interesting is that I feel relatively ok. Other than the weight gain and crawling metabolism, most of my hypo symptoms are nearly gone.
I think I finally figured out why I was still having symptoms when my FT3 was close to the middle of the reference range. Turns out that the lab changed the reference range. The low end was changed from 3.1 to 2.6 (most labs have it around 3.5!). I was having horrible symptoms at 3.5 so no, this new reference range doesn’t work Life Labs!
http://www.btf-thyroid.org/information/quick-guides/97-thyroid-function-tests
Based on the reference range they were using before my FT3 was at 16%. It’s better than the 12% I was at before but still significantly lower than the 30% I thought my levels were at. This time I went to a clinic that works with a different lab and surprise surprise my FT3 is really low again (this time it's out of range).
https://thyroidpatients.ca/2019/01/06/abbott-laboratories-reference-range-normalizes-lower-free-t3/
3 Comments
are you going to increase your meds? what dose are going to do? and what med?
I'm on Desiccated Thyroid (30 mg every morning). I'm going to talk to my doctor and see what she says. I'm assuming she's going to up my dose.
I'm on 60 mg now (30 X 2)
Question: is it possible you are pregnant?
Also b12 needs to be at least 700 if not 900 for many to feel well. So the range in the usa is wide and the lower part of the range is ridiculously low. So what was your actual b12 level?
Based on you preciois lab reaults it may make sense to further supplement with synthetic T3to get your free T3 level up. If your most recent tests show a similar trend.
That would be my opinion anyhow.
Overtraining can precent T3 from
Entering the cells. Even if T3 is in the blood . Over trainig can also increase cortisol.
My mom recently went hatd core keto diet. She lost weight initially and then nothing. She INCREASED her fat intake and water. Increased calories and LOST weight!
Just proves that calorie counting simply is not as clear cut way or just doesn’t always work.
Also b12 needs to be at least 700 if not 900 for many to feel well. So the range in the usa is wide and the lower part of the range is ridiculously low. So what was your actual b12 level?
Based on you preciois lab reaults it may make sense to further supplement with synthetic T3to get your free T3 level up. If your most recent tests show a similar trend.
That would be my opinion anyhow.
Overtraining can precent T3 from
Entering the cells. Even if T3 is in the blood . Over trainig can also increase cortisol.
My mom recently went hatd core keto diet. She lost weight initially and then nothing. She INCREASED her fat intake and water. Increased calories and LOST weight!
Just proves that calorie counting simply is not as clear cut way or just doesn’t always work.
1 Comments
Thank you flyingfool. I'm definitely not pregnant. My B12 is always close to the high end of the reference range. I wish I could supplement with synthetic T3, but my current doctor is only authorized to prescribe desiccated thyroid. I would have to see an endocrinologist and get them on board to get a prescription for Cytomel (but convincing an endocrinologist to prescribe T3 is next to impossible).
I've been managing my weight by following a very healthy diet (relatively low calorie, packed with vitamins and nutrients). It kind of sucked at first (and sometimes it still does), but now I'm closer to my original weight and look healthier than I have in years.
I've been managing my weight by following a very healthy diet (relatively low calorie, packed with vitamins and nutrients). It kind of sucked at first (and sometimes it still does), but now I'm closer to my original weight and look healthier than I have in years.
Jenn1302 , do you have new results?
4 Comments
Not yet. I'm probably going to have them in a few days. I'll make sure to post them on here :)
Jenn did you get your labs?
can you please post what your results are, my antibodies went up too on ndt.
3 Comments
My thyroid doctor wants to wait a few weeks before I get my levels checked again because it's only been a few weeks. I will post them as I have them.
Jenn1302 , do you have new results?
*as soon as
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