Aa
thyroid roller coaster
let me start by giving a brief (if thats possible) history. i was diagnosed as hypothyroid at age 10 with TSH level of 64.6. it runs VERY strongly in my family history (4 great aunts, grandmother, 1 aunt and 2 uncles all on my fathers side of the family as well as my younger sister who was diagnosed at age 2) so when i started to show symptoms my mom insisted that my pediatrician check my levels, and no one was really surprised at the results. i am now 22 years old and have been on TH for 12 years. 3 years after my diagnosis we STILL couldnt get my levels anywhere near the normal range, so i was reverred to an endo. (at age 13) at this point i was on synthroid 175mcg with tsh levels of 38.7 at my first visit with him. he immediately insisted that we reduce my dosage because a dosage that high for my size at the time was "dangerously high and put me at risk for osteoporosis by the time im 30." he reduced my meds to 125mcg and 4 weeks later my levels had skyrocketed back up to 91.5 so, of course, he gradually increased my dosage "against his better judgement"... This pattern continued for the last 9 years. the slightly increase my dosage, check in a month, the levels go down slightly, then a month later, theyre up even higher. as of right now (at age 22) i am on synthroid 250 mcg and we have yet to get my levels anywhere NEAR the "normal" range. the lowest theyve ever been is 19.2 and i was jumping for joy the day i got those lab results, even though my doctor was far from satisfied. On my most recent lab results my TSH was 44.6. At this point i feel like somewhere in the 40's is doomed to be my "normal" range. while i do still show many symptoms of being hypo (dry skin and hair, fatigue,etc.) i've become so used to living with them that i honestly dont know what it feels like for my levels to be "normal." my doctor seems baffled by my bloodwork. i am barely, by general standards, "overweight" i'm 5'8" and 158lbs. my doctor is concerned that increasing my meds every few months will never get my levels adjusted, and after beinf on this roller coaster for 12 years, im beginning to think he's right. at first we always assumed that puberty played the biggest part in my levels being so crazy, but i'm pretty sure we cant blae puberty anymore. im concerned that this will only get worse as i get older. i take my meds regularly, every day, first thing in the morning about 45 min. before i eat anything. i have always taken my meds very seriously, i was never the irresponsible kid that "forgot" like i was accused of by quite a few doctors as i was growing up. my husband and i recently decided that we want to try and get pregnant. i have had 2 previous miscarriages that my OB concluded must have been a result of my poor thyroid. after a full battary of blood tests this was the only thing that came back abnormal after both miscarriages. i am terrified to try and get pregnant again if my thyroid is going to put my baby at risk, and there seems to be no end in sight as far as getting my TSH levels into a normal range. at this point i just dont know what to do. and my doctor doesnt seem to have any ideas left either. if anyone has been in a similar situation or knows of any new ideas, please let me know.
Hee hee, it's ok, we all have bad days with our postings and typos!
Funny how different doctors have different ideas. I guess they are only human and have their own ideas as well on how to treat and not to treat.
I reckon Tirosent may be a good thing for you. The fact that any of the T4 medications are powdered and compressed into a tiny pill can have an effect on those who can't absorb it easily. Tirosent is in a capsule and dissolves easier in the tummy.
Push for that!
Oh and Yeah....thanks for the sentiment! I am still looking at marrying some US bloke just to get some Tirosent,.....hope he understands! (Just kidding!)
Funny how different doctors have different ideas. I guess they are only human and have their own ideas as well on how to treat and not to treat.
I reckon Tirosent may be a good thing for you. The fact that any of the T4 medications are powdered and compressed into a tiny pill can have an effect on those who can't absorb it easily. Tirosent is in a capsule and dissolves easier in the tummy.
Push for that!
Oh and Yeah....thanks for the sentiment! I am still looking at marrying some US bloke just to get some Tirosent,.....hope he understands! (Just kidding!)
i apologize everyone, for the ridiculous amount of typos in EVERYTHING i just typed. its been a long night!
i missed a question.
i have been on levothyroxin for 4 years, before that i was on unithroid, name brand synthroid before that and before that levoxyl. so yes, i have been on other other meds, the hiest they were ever able to get my FT3 and FT4 seemed to respond fastest to the unithroid, but my then Dr. (not the same one i'm seeing now) changed it because my TSH levels were still in the 60's i have requested to my current doctor to go back to unithroid, but im still relatively new to him, so he wants to "see how things work out continuing the levothyroxine before changing anything. also, its irrelevant, but with my husband being in the army, we move around alot (3 ties in the last 2 years) so with every move comes a new doctor in a new town who, even with my medical records in front of him, always wants to just "see how things go" until im not "new" anymore. which, as im sure you can imagine, makes all of this that much more aggravating.
i have been on levothyroxin for 4 years, before that i was on unithroid, name brand synthroid before that and before that levoxyl. so yes, i have been on other other meds, the hiest they were ever able to get my FT3 and FT4 seemed to respond fastest to the unithroid, but my then Dr. (not the same one i'm seeing now) changed it because my TSH levels were still in the 60's i have requested to my current doctor to go back to unithroid, but im still relatively new to him, so he wants to "see how things work out continuing the levothyroxine before changing anything. also, its irrelevant, but with my husband being in the army, we move around alot (3 ties in the last 2 years) so with every move comes a new doctor in a new town who, even with my medical records in front of him, always wants to just "see how things go" until im not "new" anymore. which, as im sure you can imagine, makes all of this that much more aggravating.
forgot to update everyone on my latest lab results (from last monday) showed my FT4 at 0.1 and my FT3 at 1.2 (both the highest they've ever been. and my TSH still at 46
hi everyone, sorry it has taken me so long to get back on here, went out of town for a while for the holidays. just to answer/update everyone:
i saw my doctor last mon. and had him check (again) for antibodies and, (big shock) i tested positive this time. while that doesnt do too much to answer any questions, its verified, so there we go.
gimel, after 12 years of dealing with all of this, i haven never, until now, heard anyone talk about RT4, but i will absolutely be looking into that with my Dr. when i go back on the 25th.
i dont take any medications other than my levo. and a multivitamin, so that shouldnt interfere. concerning my diet, i dont know of ny foods that would be detrimental, bu i AM allergic to iodine, which is, as we all know, a vital nutrient to your thyroid. so while im not eating anything to interfere, im also not eating alot of the things i need, but i dont have much choice in this.
to goolara- haha, yes, those ARE my levels, and YES im still typing. ive never (in the 12 years since i was diagnosed) had ANY symptoms more severe than those listed. i feel fine. (of course ive always wondered if my "normal" is drastically different than everyone else's) thats another one of the MANY things that has always baffled every doctor ive seen, apparently i dont look or feel like im supposed to given the condition, but i cant say im too upset about this. and i will absolutely be asking my Dr about Tirosint.
Barb- yes, my b12 levels have always been "normal" (i dont remember any exact numbers, sorry, i dont usually note the things that arent unusual)
and lastly, redheadaussie- i really hate to know someone else is dealing with the same issues that i am, i wouldnt wish it on my worst enemy, but i am REALLY glad to know im not the only one!
i saw my doctor last mon. and had him check (again) for antibodies and, (big shock) i tested positive this time. while that doesnt do too much to answer any questions, its verified, so there we go.
gimel, after 12 years of dealing with all of this, i haven never, until now, heard anyone talk about RT4, but i will absolutely be looking into that with my Dr. when i go back on the 25th.
i dont take any medications other than my levo. and a multivitamin, so that shouldnt interfere. concerning my diet, i dont know of ny foods that would be detrimental, bu i AM allergic to iodine, which is, as we all know, a vital nutrient to your thyroid. so while im not eating anything to interfere, im also not eating alot of the things i need, but i dont have much choice in this.
to goolara- haha, yes, those ARE my levels, and YES im still typing. ive never (in the 12 years since i was diagnosed) had ANY symptoms more severe than those listed. i feel fine. (of course ive always wondered if my "normal" is drastically different than everyone else's) thats another one of the MANY things that has always baffled every doctor ive seen, apparently i dont look or feel like im supposed to given the condition, but i cant say im too upset about this. and i will absolutely be asking my Dr about Tirosint.
Barb- yes, my b12 levels have always been "normal" (i dont remember any exact numbers, sorry, i dont usually note the things that arent unusual)
and lastly, redheadaussie- i really hate to know someone else is dealing with the same issues that i am, i wouldnt wish it on my worst enemy, but i am REALLY glad to know im not the only one!
Well, I searched for possible reasons for the low FT4 and FT3 until I ran out of patience. In desperation to try to find something useful, I finally decided to try a long shot. I found an email address for a doctor that is a highly regarded thyroid doctor and sent an email explaining your situation and pleading for any direction that he could provide. To my amazement I got a pretty fast response quoted below.
"A person on levothyroxine should have a free T4 in the upper third of the reference range. (see p. 36, NACB: Laboratory Support for the Diagnosis and Monitoring of Thyroid Disease) For many persons it even needs to be above the FT4 ref. range. They need high FT4 levels to drive sufficient FT3 production.
I don't know what lab's ranges are involved, but LabCorp's range for FT4 is 0.82-1.77ng/dl, and for free T3 are 2.0-4.4 pg/ml. If her lab's ranges are similar, perhaps you have misstated her FT4 and it should be 0.6ng/dL. If her lab's ranges are similar to LabCorps, then she is being undertreated. She needs to be given enough levothyroxine to raise her FT4 to at least 1.5ng/dL. This should raise her FT3 to at least 3pg/ml.
The dose is irrelevant. Maybe she absorbs oral T4 poorly or she metabolizes it rapidly. It doesn't matter. She needs to be given whatever amount of oral levothyroxine it takes to 1.) eliminate signs and symptoms of hypothyroidism and probably 2.) to restore her FT4 and FT3 levels to around the numbers I've mentioned--or to a similar level within the laboratory's reference range. This amount of levothyroxine will no doubt normalize her TSH. The doctor should have no problem with prescribing enough levothyroxine to at least "normalize" her TSH." However the NACB guidelines are also clear on the TSH goal of levothyroxine therapy--the patient usually needs to be given enough levothyroxine to lower the TSH into the lower part of the range (from 0.5 to 2.0 miU/L).
___________________________
Take particular notice of the statements, "The dose is irrelevant. Maybe she absorbs oral T4 poorly or she metabolizes it rapidly. It doesn't matter." And also, "She needs to be given whatever amount of oral levothyroxine it takes to 1.) eliminate signs and symptoms of hypothyroidism and probably 2.) to restore her FT4 and FT3 levels to around the numbers I've mentioned--or to a similar level within the laboratory's reference range". With your high dose already, this approach did not occur to me as an alternative. Now with this knowledge, I think it is something you need to work out with a doctor.
"A person on levothyroxine should have a free T4 in the upper third of the reference range. (see p. 36, NACB: Laboratory Support for the Diagnosis and Monitoring of Thyroid Disease) For many persons it even needs to be above the FT4 ref. range. They need high FT4 levels to drive sufficient FT3 production.
I don't know what lab's ranges are involved, but LabCorp's range for FT4 is 0.82-1.77ng/dl, and for free T3 are 2.0-4.4 pg/ml. If her lab's ranges are similar, perhaps you have misstated her FT4 and it should be 0.6ng/dL. If her lab's ranges are similar to LabCorps, then she is being undertreated. She needs to be given enough levothyroxine to raise her FT4 to at least 1.5ng/dL. This should raise her FT3 to at least 3pg/ml.
The dose is irrelevant. Maybe she absorbs oral T4 poorly or she metabolizes it rapidly. It doesn't matter. She needs to be given whatever amount of oral levothyroxine it takes to 1.) eliminate signs and symptoms of hypothyroidism and probably 2.) to restore her FT4 and FT3 levels to around the numbers I've mentioned--or to a similar level within the laboratory's reference range. This amount of levothyroxine will no doubt normalize her TSH. The doctor should have no problem with prescribing enough levothyroxine to at least "normalize" her TSH." However the NACB guidelines are also clear on the TSH goal of levothyroxine therapy--the patient usually needs to be given enough levothyroxine to lower the TSH into the lower part of the range (from 0.5 to 2.0 miU/L).
___________________________
Take particular notice of the statements, "The dose is irrelevant. Maybe she absorbs oral T4 poorly or she metabolizes it rapidly. It doesn't matter." And also, "She needs to be given whatever amount of oral levothyroxine it takes to 1.) eliminate signs and symptoms of hypothyroidism and probably 2.) to restore her FT4 and FT3 levels to around the numbers I've mentioned--or to a similar level within the laboratory's reference range". With your high dose already, this approach did not occur to me as an alternative. Now with this knowledge, I think it is something you need to work out with a doctor.
I agree that RT3, though probably a long shot, is worth checking out.
Have you ever tried taking your meds sublingually? That way, they are absorbed directly into your bloodstream from beneath your tongue, bypassing your gut and any issues that you might have there inhibiting absorption.
When I last saw my endo, we were discussing Tirosint. He expressed an interest in it for his patients who take their meds sublingually. It might be something to ask your doctor to consider.
Have you ever tried taking your meds sublingually? That way, they are absorbed directly into your bloodstream from beneath your tongue, bypassing your gut and any issues that you might have there inhibiting absorption.
When I last saw my endo, we were discussing Tirosint. He expressed an interest in it for his patients who take their meds sublingually. It might be something to ask your doctor to consider.
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I'm rather at a loss, here too. The RT3 idea is worth checking out.
I do agree with the others; that we are not born with those antibodies and that Hashi's can develop over time.
Have you ever tried a med, other than synthroid? Most meds have fillers, that not all patients can tolerate. There's a new med that came out in May, called Tirosint, that's a gelcap. The absorption rate is supposed to be much higher than with pill type med(s). I started taking it in August and my FT levels are the highest I've been able to get them. Might be worth a try.
In addition, I wonder if it would help for you to add a small dose of cytomel, which is a T3 only med.
Have your vitamin B12 levels been tested?
I do agree with the others; that we are not born with those antibodies and that Hashi's can develop over time.
Have you ever tried a med, other than synthroid? Most meds have fillers, that not all patients can tolerate. There's a new med that came out in May, called Tirosint, that's a gelcap. The absorption rate is supposed to be much higher than with pill type med(s). I started taking it in August and my FT levels are the highest I've been able to get them. Might be worth a try.
In addition, I wonder if it would help for you to add a small dose of cytomel, which is a T3 only med.
Have your vitamin B12 levels been tested?
ive been suffering for three years with graves disease and thyroid disease im on a tab call calcitrol it is to help me absorb my medications had a complete thyroid ectomy and removal of a parathyroid gland .the other three do no longer work and because they do not work i do not store my meds and things like calcium ppotasium etc lots of stuff the calcitrol after a long battle trying to find something helps my body absorb the meds ,talk to your doc and see what they say it is working wonders for me ,i will be on them for the rest of my life ,might not have any of this trouble if i didnt let them cut my throat who knows all i nknow is having thyroid problems for me is a nightmare i hope u have more sucess
I have Hashimoto's and none of my parent's, or grandparent's have it. I have one sister with it, but has it very mildly. I am one of 7 children and two of us have Hashi, one has Grave's and the rest are so called happy little vegemites! (I'm an Aussie!) I hate to disagree with your clever doctor but it is not something you are born with nor always genetic. I would say mine developed as I was pregnant with horrendous morning sickness. I believe that was a sign of future problems.
As gimel says, Reverse T3 is also a reason why you may not be utilising your medications.I have a high RT3 yet again my doctors here in the Land of Oz fail to connect that problem.
I too go up doses and after about 6 weeks can see a massive drop on TSH but then in a month or so up she goes back to those low numbers. ( I was 0.06 then shot up to 11.9 then dipped back to 1.79 all on a miniscule dose change of 3mcgs daily!!!!) At present I can feel them going back to the double figures again and it has been 6 weeks since the last test) I have like you got to the point of total frustration. My doctor assumed that I was not complying either, but then accused me of over dosing when my TSH goes to 0.06! Grrrrrr.
So you and I have the same sort of issues!
As gimel says, Reverse T3 is also a reason why you may not be utilising your medications.I have a high RT3 yet again my doctors here in the Land of Oz fail to connect that problem.
I too go up doses and after about 6 weeks can see a massive drop on TSH but then in a month or so up she goes back to those low numbers. ( I was 0.06 then shot up to 11.9 then dipped back to 1.79 all on a miniscule dose change of 3mcgs daily!!!!) At present I can feel them going back to the double figures again and it has been 6 weeks since the last test) I have like you got to the point of total frustration. My doctor assumed that I was not complying either, but then accused me of over dosing when my TSH goes to 0.06! Grrrrrr.
So you and I have the same sort of issues!
I have to say I'm astounded as well...not by your TSH (mine runs around 20 more or less all the time), but by your FT3 and FT4 levels and the fact that you are still typing! Let me verify...your FT3 is curently 0.8 with a range of 2-4, and your FT4 is 0.06 with a range of 0.7-1.7. Correct?
How do you feel? You mention a few minor symptoms. Do you have others?
BTW, Hashi's is not proven to be genetic although it is thought to run in families, and it can develop over time. We are not born with our antibodies.
How do you feel? You mention a few minor symptoms. Do you have others?
BTW, Hashi's is not proven to be genetic although it is thought to run in families, and it can develop over time. We are not born with our antibodies.
I have to confess to having no idea at this point. I hope that other members will respond also. Meantime I am going to throw out all kinds of wild thoughts/ suggestions just to establish more facts and get some ideas going. And I am also going to dive into the "net and see if I can find out anything that relates to your case.
So here is my first dumb question. Have you ever been tested for reverse T3? The dumb thought there is could it be possible that you convert T4 to RT3 so well, that nothing else is left. Dumb thought, huh?
Second dumb question, do you take any other meds that might interfere with absorption of the Synthroid?
Third dumb question. Do you eat a lot of foods that are detrimental to absorption of Synthroid?
So here is my first dumb question. Have you ever been tested for reverse T3? The dumb thought there is could it be possible that you convert T4 to RT3 so well, that nothing else is left. Dumb thought, huh?
Second dumb question, do you take any other meds that might interfere with absorption of the Synthroid?
Third dumb question. Do you eat a lot of foods that are detrimental to absorption of Synthroid?
also, according to my Dr. the normal range for free T3 id 2.0 to 4.0 but i've read that some say its 2.3 to 4.3 and the free T4 is .7-1.7
that is EXACTLY the reason that my Dr sees no real hope in continuing to increase my meds. even with the high dosages there seems to be no evidence of me actually absorbing any of it. as i said earlier, i was accused by a few different doctors when i was younger of not taking my medicine (i cant say i blame them). now that im older Dr's are finally realizing that there is a problem beyond what they can see. i feel like it should have been recognized sooner, but they always assumed i was just an irresponsible kid. ive had tons of bloodwork done to test for anything that could me "intercepting" my TH in any way. but aside from my thyroid problems itsself they've never found ANYTHING abnormal in my bloodwork. we have no idea why my body just simply doesnt react to the meds at all.
I disagree with your doctor about the Hashi's, but regardless, it seems that your problem is that the high dose of thyroid meds you are taking doesn't show up in the tests, therefore not having the desired effect.
Those numbers are astonishing. What were the lab's reference ranges for the FT3 and FT4?
I have to say that I'm dumbfounded to this point with those numbers. I know that one of our members has a pituitary related problem that results in high TSH, even when her FT3 and FT4 are adequate to relieve symptoms. For that and many other reasons, I don't personally pay any attention to my TSH any more. It has been about .05 for over 25 years, in order to get my FT3 and FT4 levels high enough to relieve symptoms.
But your test results show very low levels of FT3 and FT4, even with a high dosage of Synthroid. Where is it all going???? Has the doctor ever had any idea about why you are not reflecting the high dosage of Synthroid in your FT3 and FT4 test results?
Do you have any test results for FT3 and FT4 from the time when you were feeling your best?
I have to say that I'm dumbfounded to this point with those numbers. I know that one of our members has a pituitary related problem that results in high TSH, even when her FT3 and FT4 are adequate to relieve symptoms. For that and many other reasons, I don't personally pay any attention to my TSH any more. It has been about .05 for over 25 years, in order to get my FT3 and FT4 levels high enough to relieve symptoms.
But your test results show very low levels of FT3 and FT4, even with a high dosage of Synthroid. Where is it all going???? Has the doctor ever had any idea about why you are not reflecting the high dosage of Synthroid in your FT3 and FT4 test results?
Do you have any test results for FT3 and FT4 from the time when you were feeling your best?
i was tested for the thyroid antibodies when i was around age 15 (after my younger sister tested positive) and was negative. i havent been re-tested since them because my Dr. said that theyre either present or not. that hashimotos is genetic and doesnt develope over time. should i request to have them checked again?
yes, sorry i should have included those as well. every time i have my bloodwork done they always run a TSH, free T3 and free T4 both are always low (indicitave of hypothyroidism) bet never as drastically low as my TSH. my free T3 has ranged from 0.05 to 1.1. (currently at 0.8) and the free T4 has ranged from 0.02 to 0.09 (currently at 0.06)
Hi, I am having trouble on my thyroid medication as well. I go hyper on low doses and hypo on higher doses. I know full well I have trouble converting the medication into usable Free T3 (which you should get tested as well as Free T4 and thyroid antibodies) It may be that you need some T3 supplement to help you if yours is low.
Not being able to become pregnant and having the miscarriages is a sign of hypothyroidism.
I wouldn't be blaming your puberty on any of your woes. Probably more the fact you aren't converting properly. OR you may have antibodies which can interfere with the T4 (your medication) being used properly in the body. Go get the tests done and we can see what is happening.
Not being able to become pregnant and having the miscarriages is a sign of hypothyroidism.
I wouldn't be blaming your puberty on any of your woes. Probably more the fact you aren't converting properly. OR you may have antibodies which can interfere with the T4 (your medication) being used properly in the body. Go get the tests done and we can see what is happening.
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