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9yo Hashimoto's on Levo w/wt gain
My 9yo daughter was diagnosed with Hashimoto's with the following bloodwork:
normal
T4 5.5 normal 4.1-12.1
T3 1.55 normal 0.64-1.68
abnormal
TSH 36.89 normal 0.19-4.47
TPO 1580 normal 0-18
Pediatrician sent us to Endo, who made us redo bloodwork 3 months later at a different lab before prescribing anything. The results were:
Free T4 .8 normal .90-1.67
TSH 27 normal .60-4.84
Endo started her on Levothyroxine, 37.5 mcg/day. Redid blood and the latest results were:
Free T4 1.14 normal .90-1.67
TSH 5.21 normal .60-4.84
Advised her to stay with same dosage and redo blood in 3 months.
However, since she started Levo she has gained 9 pounds!!!! That's 3 months ago. I have called him, but he had the nurse tell me that one doesn't have to do with the other.
I was upset that he didn't even get on the phone to ask if anything else has changed in her routine, etc. I had also called one other time (it was January and my next appt is in May so I didn't want to wait, but maybe I was bothering him?) to ask about the clicking sound in her joints and the general aches and pains she complains of, especially in her knees. Again, he had the nurse tell me one doesn't have to do with the other. He might be right, but I have read how Hashimoto's is linked to Rheumatoid Arthritis so I didn't want to ignore her complaints, and the clicking in her joints is very funky and bothers her because others can hear it.
The nurse addressed the weight gain by asking me if she was active...to which she was told YES! My daughter is involved in dance, gymnastics, ice skating, tennis, and recently we have added 4 nights a week/2.5 hours a night of cheer for a competition team. She was fitted for her uniform in December, but when it came in this week (Feb. 2nd), the skirt didn't fit because all the weight she has gained is in her midsection. I am so upset. I don't believe a child would gain that much weight in a few months without a reason. Could it be the Levothyroxine? I have read so many posts of adults having this weight gain problem. If the Endo doesn't want to believe the meds are at fault, what is my next step?
normal
T4 5.5 normal 4.1-12.1
T3 1.55 normal 0.64-1.68
abnormal
TSH 36.89 normal 0.19-4.47
TPO 1580 normal 0-18
Pediatrician sent us to Endo, who made us redo bloodwork 3 months later at a different lab before prescribing anything. The results were:
Free T4 .8 normal .90-1.67
TSH 27 normal .60-4.84
Endo started her on Levothyroxine, 37.5 mcg/day. Redid blood and the latest results were:
Free T4 1.14 normal .90-1.67
TSH 5.21 normal .60-4.84
Advised her to stay with same dosage and redo blood in 3 months.
However, since she started Levo she has gained 9 pounds!!!! That's 3 months ago. I have called him, but he had the nurse tell me that one doesn't have to do with the other.
I was upset that he didn't even get on the phone to ask if anything else has changed in her routine, etc. I had also called one other time (it was January and my next appt is in May so I didn't want to wait, but maybe I was bothering him?) to ask about the clicking sound in her joints and the general aches and pains she complains of, especially in her knees. Again, he had the nurse tell me one doesn't have to do with the other. He might be right, but I have read how Hashimoto's is linked to Rheumatoid Arthritis so I didn't want to ignore her complaints, and the clicking in her joints is very funky and bothers her because others can hear it.
The nurse addressed the weight gain by asking me if she was active...to which she was told YES! My daughter is involved in dance, gymnastics, ice skating, tennis, and recently we have added 4 nights a week/2.5 hours a night of cheer for a competition team. She was fitted for her uniform in December, but when it came in this week (Feb. 2nd), the skirt didn't fit because all the weight she has gained is in her midsection. I am so upset. I don't believe a child would gain that much weight in a few months without a reason. Could it be the Levothyroxine? I have read so many posts of adults having this weight gain problem. If the Endo doesn't want to believe the meds are at fault, what is my next step?
Be a mama bear, for your daughter's sake, sack this Dr and find a new one super quick. Your daughter urgently needs a significant increase in meds.
This is a terrible Dr. The correct approach (even if Dr only looks at TSH) is to give her a significant increase in meds.
Thyroid affects your daughter's growth and development.
I agree that this appears to be malpractice.
This is a terrible Dr. The correct approach (even if Dr only looks at TSH) is to give her a significant increase in meds.
Thyroid affects your daughter's growth and development.
I agree that this appears to be malpractice.
I think it's wrong for you to not tell the doctor he's fired and to stick with his diabetes patients from now on.
Get another endocrinologist. One that doesn't hide behind his nurses.
Get another endocrinologist. One that doesn't hide behind his nurses.
I don't understand his reluctance to increase her meds. Her FT4 is below range, and her TSH is 74.9. That's not just a "little" off.
No, it's not wrong of you to insist he adjust her meds...you're simply advocating for your daughter. There is just no way he could justify what he's doing. I can't even imagine a doctor allowing a patient's labs to get this far out of whack and not adjusting meds. I'd insist ASAP, and if he does nothing, I think you have to look for another doctor immediately.
If he doesn't want to increase her meds, I'd certainly make him explain why not. That TSH ought to make any doctor in the world increase meds.
No, it's not wrong of you to insist he adjust her meds...you're simply advocating for your daughter. There is just no way he could justify what he's doing. I can't even imagine a doctor allowing a patient's labs to get this far out of whack and not adjusting meds. I'd insist ASAP, and if he does nothing, I think you have to look for another doctor immediately.
If he doesn't want to increase her meds, I'd certainly make him explain why not. That TSH ought to make any doctor in the world increase meds.
I should edit that to say, is it wrong of me to insist that he do something other than take blood?!
I know I should insist, but when I ask any question he makes me feel like an idiot for asking....so I know he will have some excuse for not testing FT3 and not increasing her meds, etc that will make me seem like a pathetic loser for even suggesting it!
I know I should insist, but when I ask any question he makes me feel like an idiot for asking....so I know he will have some excuse for not testing FT3 and not increasing her meds, etc that will make me seem like a pathetic loser for even suggesting it!
Thank you for the endo names:)
In the meantime, I finally spoke to the doctor on 4/26. Conversation was brief. He acknowledged that her TSH was unusually high and her FT4 was too low.
He didn't want to adjust her meds, just wanted her to redo the bloodwork.
It's been 6 months now that she is on the same dosage. When do I need to insist that he do something other than take blood?
In the meantime, I finally spoke to the doctor on 4/26. Conversation was brief. He acknowledged that her TSH was unusually high and her FT4 was too low.
He didn't want to adjust her meds, just wanted her to redo the bloodwork.
It's been 6 months now that she is on the same dosage. When do I need to insist that he do something other than take blood?
Please let us know how you go with the Drs and hope your daughter can be properly treated.
New Jersey...and hour from NYC. I am willing to travel in any direction (NYC, Philly, etc.)
If you will please tell us your location, perhaps a member can recommend a good thyroid doctor based on personal experience.
I agree...negligence comes to mind. FT4 is below range, and TSH is very high. I can't imagine what the doctor is waiting for.
When I was diagnosed, my TSH was a little lower than your daughter's, and I felt pretty awful.
With Hashi's, damage to the thyroid is ongoing. So, until the thyroid is completely incapable of making thyroid hormones and we're on 100% replacement, meds increases have to keep up with the continuing failure of the thyroid.
I know you've waited a long time for this appointment, but I'm very much afraid this doctor is going to be a disappointment. Hopefully, he'll be more responsive in person.
When I was diagnosed, my TSH was a little lower than your daughter's, and I felt pretty awful.
With Hashi's, damage to the thyroid is ongoing. So, until the thyroid is completely incapable of making thyroid hormones and we're on 100% replacement, meds increases have to keep up with the continuing failure of the thyroid.
I know you've waited a long time for this appointment, but I'm very much afraid this doctor is going to be a disappointment. Hopefully, he'll be more responsive in person.
Hello,
In the current context TSH is also significant and important (aside from the FT4 being way too low) - your daughter needs an urgent increase in meds. She is clearly and obviously hypothyroid.
I am concerned that your Endo doesn;'t seem to thing this is an urgent concern.
I would hgope you can also get tested for FT3.
In any case she needs an increase in meds.
Let us know what happens next week. Hope you can get some action.
In the current context TSH is also significant and important (aside from the FT4 being way too low) - your daughter needs an urgent increase in meds. She is clearly and obviously hypothyroid.
I am concerned that your Endo doesn;'t seem to thing this is an urgent concern.
I would hgope you can also get tested for FT3.
In any case she needs an increase in meds.
Let us know what happens next week. Hope you can get some action.
UPDATE...
March labwork:
Free T4 0.66 (0.90-1.67) .......January was 0.8 with same range
TSH 74.90 (0.60-4.84).....January was 5.2 with same range
I cannot get her doctor on the phone!!! Left a week's worth of messages before finally getting a little 'nasty' on the voicemail. He finally returned my call, left a message, but no other information and that was 3 weeks ago. Honestly, after getting upset on his voice mail I started to think that I was overreacting...if something was not good on the labs, he would have made a point to call me, right?! (or so I thought) So I backed off and 2 weeks went by, never heard from him again, then called the office and left another voicemail asking for copies of the labwork to be sent to my house. I just received them and I see that her TSH went way up! I know that it doesn't mean much, but since he thinks it does and is treating her based on TSH levels I would think her most recent numbers would concern him!
I did call again after seeing her results and I guess I will have to wait until next week to see if he calls back:( I have an appt in May (waited 5 months to get on his schedule) so if nothing else he will have to address it then.
She continues to gain weight, have intense mood swings, lack of concentration, constipation, leg pain, you name it:(
March labwork:
Free T4 0.66 (0.90-1.67) .......January was 0.8 with same range
TSH 74.90 (0.60-4.84).....January was 5.2 with same range
I cannot get her doctor on the phone!!! Left a week's worth of messages before finally getting a little 'nasty' on the voicemail. He finally returned my call, left a message, but no other information and that was 3 weeks ago. Honestly, after getting upset on his voice mail I started to think that I was overreacting...if something was not good on the labs, he would have made a point to call me, right?! (or so I thought) So I backed off and 2 weeks went by, never heard from him again, then called the office and left another voicemail asking for copies of the labwork to be sent to my house. I just received them and I see that her TSH went way up! I know that it doesn't mean much, but since he thinks it does and is treating her based on TSH levels I would think her most recent numbers would concern him!
I did call again after seeing her results and I guess I will have to wait until next week to see if he calls back:( I have an appt in May (waited 5 months to get on his schedule) so if nothing else he will have to address it then.
She continues to gain weight, have intense mood swings, lack of concentration, constipation, leg pain, you name it:(
She needs her meds increased. She's being left hypo by her doctor. I'm sorry to tell this doctor that weight gain or inability to lose weight is one of the top three complaints from people who are hypo. When you're hypo, your metabolism slows, so you just don't burn calories as efficiently.
Many adults find they still have hypo symptoms until FT4 is around, or even a little higher than, 50% of range. Children run higher FT4 levels than adults.
As Sally pointed out, he should also be testing FT3. It's the test that correlates best with symptoms. Her doctor should be watching FT3 to make sure it's tracking FT4 up. Although I think her FT4 is still too low at this point to determine a conversion issue, FT3 should be tracked in case that becomes an evident issue down the road.
Many doctors think that TSH is the ultimate diagnostic. So, typically, if TSH is out of range, they will continue to increase meds until it is more optimal. I have no idea why her doctor is looking at above range TSH and not increasing her meds. If she eats healthy and is active, there's no reason she couldn't lose weight on levo.
You can try to educate this doctor, and you can try to insist that he increase her meds until she stops gaining weight, but if he doesn't even think weight gain is a symptom, you're probably going to be frustrated. You might have to shop for another doctor. There are doctors out there who recognize that not everyone is comfortable everywhere in the range...some of us have to be low in the range, some of us high, and it's ultimately symptoms that determine where we end up.
Many adults find they still have hypo symptoms until FT4 is around, or even a little higher than, 50% of range. Children run higher FT4 levels than adults.
As Sally pointed out, he should also be testing FT3. It's the test that correlates best with symptoms. Her doctor should be watching FT3 to make sure it's tracking FT4 up. Although I think her FT4 is still too low at this point to determine a conversion issue, FT3 should be tracked in case that becomes an evident issue down the road.
Many doctors think that TSH is the ultimate diagnostic. So, typically, if TSH is out of range, they will continue to increase meds until it is more optimal. I have no idea why her doctor is looking at above range TSH and not increasing her meds. If she eats healthy and is active, there's no reason she couldn't lose weight on levo.
You can try to educate this doctor, and you can try to insist that he increase her meds until she stops gaining weight, but if he doesn't even think weight gain is a symptom, you're probably going to be frustrated. You might have to shop for another doctor. There are doctors out there who recognize that not everyone is comfortable everywhere in the range...some of us have to be low in the range, some of us high, and it's ultimately symptoms that determine where we end up.
She sees a nutritionist since she was 5yo because of sensory processing disorder, so we keep a food diary etc and know exactly what she's eating...that's why I don't think its food related. The endo told me that she would not lose any weight on the Levo, but I didn't think she would gain weight either! Then again, he also said she wasn't gaining weight because of the hypo....so I left the office kind of confused about what I was taking the meds for, but I've done alot of research since then. I'm just confused as to how to help her if its not the diet and not the meds???
Also, next time she does blood work, please push for FT3 as well. FT3 has a strong correlation with how we feel. It should be at least mid range, but actually a bit higher is usually better.
I totally agree with Goolarra. Your daughter is still hypo and needs an increase in meds. Ideally TSH is in the range of 1 - 2. However, FT3 and FT4 are far more important for managing and adjusting medications dose and should always take precedence (along with how she is feeling) over just TSH.
I totally agree with Goolarra. Your daughter is still hypo and needs an increase in meds. Ideally TSH is in the range of 1 - 2. However, FT3 and FT4 are far more important for managing and adjusting medications dose and should always take precedence (along with how she is feeling) over just TSH.
I don't think it's the meds, either, nor is it the meds when adults have the same problem.
Your daughter is still hypo and needs a meds increase. Her FT4 is at 31% of range, and many of us remain symptomatic (weight gain) until FT4 is about 50% of range. Her TSH is clearly above range. Although TSH is of limited usefulness on adjusting meds, many with Hashi's find TSH has to be much lower in the range (e.g. less than 2.0).
Did the doctor explain why he wasn't increasing her meds with clearly hypo labs? Does she have other "classic" hypo symptoms? Hair loss? Depression? Fatigue/drowsiness? Constipation? Low BP and/or HR? Irritability?
Your daughter is still hypo and needs a meds increase. Her FT4 is at 31% of range, and many of us remain symptomatic (weight gain) until FT4 is about 50% of range. Her TSH is clearly above range. Although TSH is of limited usefulness on adjusting meds, many with Hashi's find TSH has to be much lower in the range (e.g. less than 2.0).
Did the doctor explain why he wasn't increasing her meds with clearly hypo labs? Does she have other "classic" hypo symptoms? Hair loss? Depression? Fatigue/drowsiness? Constipation? Low BP and/or HR? Irritability?
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