Aa
latest labs are off, Dr. refuses to discuss anything but TSH
Hi everybody...
This is artfemme11. Somehow I can't log in under my "real" name, I've asked for new passwords and kept them in my email so I know they're right...those stupid numbers they send. I try to log in, no dice. They also say my username is taken, and of course it is because it's MINE. I finally decided to open another account through a different mailbox.Does anybody else have this problem,or know a way to communicate w/ admin.? I can't even get into my previous posts, yet MedHelp sends me emails regularly on other general topics. So frustrating.
Anyway, new Endo, new labs. Yet another frustrating experience of being told he only goes by the TSH.$th Endo, last one in my medical group. I asked him to help me get my Free T3 and T4 into the upper 1/3 of the range and told him I didn't care what my TSH was , if it's below "normal" it should be, according to my primary doctor, because I have nodules on both lobes, which shrank after she put me on the combination at my request. In other posts that gimel, goolara, barb, tamara etc. have responded to, I posted other labs and described how I did really well w/ cessation of all symptoms when I first went on T3+T4, but later took a dive that I now associate w/ going on generic T3 w/out changing dosage. I started to get what I thought were hyper symptoms: joint pain, dizzy, heart palpitaions, anxious. So my primary cut the T3 in 1/2 and I crashed. Deeply depressed, 15 lbs. gained in 3 weeks, brain fog and distraction, poor vision. I upped the T3 again and the depression, joint pain, fog, and blurry vision went away but I kept gaining weight. Then my Free T3 became too high, while the Free T4 stayed in the lower 1/3 of range.
I figured the ratio had to be off, so rather than my primary and I guessing, I went to this new Endo. I took in 10 years worth of labs that I'd charted, and a written description of all the symptoms ( every single one except constipation ) and a history of the multiple whiplash injuries and concussion I 'd had as well as the toxic exposure I had that I think finally pushed my thyroid over the edge. I wrote a complete family history which includes various kinds of auto immune manifestations including a sister w/ Hashimoto's. I described how my labs had changed for the better w/ meds....lower cholesterol, blood pressure,glucose and creatinine amongst them. I had been on every antidepressant known w/ bad reactions and no positive benefits. W/ addition of T3, depression went completely away in less than a week.I lost 15 lbs. in 3 weeks when I went on meds, and another 5 gradually over the next 4 months without changing diet or exercise . My hair (including pubic) and eyebrows grew back. All the antibody tests for Hashimoto's have come back negative. My cortisol levels are at the high level of range.
The Endo said my TSH was in normal range before I went on meds, and now it's below norm so I shouldn't be on meds. at all. The concept of nodule suppression seems foreign to him. He had no explanation for my symptoms, but said they could be caused by a number of things. When I asked what (several times) he said he doesn't know. The other 3 have said the same thing. I asked what the probability was that I had several ailments to cover the multitude oof symptoms, vs. hypothyroidism that covers them all. He seemed angered. I asked how he explained my symptoms going away w/ medication and he said he didn't know. I get the feeling w/ the Endos that they think I have Munchausen's disorder or that I'm looking up symptoms on the Internet and either somehow faking them or producing them psychsomatically.
Anyway..he reduced my meds to 50 mcg. T4 generic and 25 mcg. Cytomel. I insisted on the brand. When I said that that seemed like a strange ratio, he said "Well based on what you said, your body seems to like T3 better." !!! I didn't know what to do except do it until the next blood test. He wrote a letter to my primary saying he wanted to take me off meds altogether if my TSH remained supressed. She shook her head when she gave me a copy of the letter. So I got the latest labs from him back yesterday. He only did TSH and T3 the first time, though I asked him specifically for both Free's. I called him on it and he said he didn't believe the Free tests were of any value. So this time I forced him to do both. Here are the results:
TSH .422 (.450-4.500 )
T4 Free direct .66 ( ,82-1.77 )
T3 Free serum 3.6 ( 2.0-4.4 )
IGF-1 211 ( 75-212 )
He felt that the TSH was "acceptable", the Free T3 " a little too high", and that there was no meaning to the low Free T4. He said that we had an obvious difference in our opininons and that I should seek help elsewhere.What he said today was that I should " go to that doctor that wrote that book you like so much". That would be "The Thyroid Solution", which I took to his office and showed him that Dr. Aram is fully accredited and not some goofball off the Internet. When I said Dr. Aram is in Texas and I'm in Los Angeles he just shrugged. I sure do get the feeling these guys are threatened by the Internet.
Any thoughts, advice, or opininons? I see my primary tomorrow. I think these people are trying to kill me. Symptoms that have occurred since this newest med change are painfully dry skin, hair not curling as much and dryer, rash, foot cramps, night sweats, odoroous urine and even more weight gain and edema.BTW he says I don't have edema even though I got a neuroma from swollen feet and all the other doctors say they can see it, especially in my face and legs and feet. I gained almost 10 lbs. in the last 12 weeks since I've been seeing him and I'm back to the weight I was before I was treated at all...164. My lifetime body weight is 127-129, and as an older person I would expect to be about 10 lbs. heavier, which is what I was after I first went on meds.
Just one other thing that he says means nothing, but I think is particular to MY body....When I first started complaining that something was wrong with me and my symptoms weren't yet very bad, my TSH was .78. 2 years later it was 1.58. By that time I'd lost about 1/3 of my hair and the outer parts of my eyebrows, was depressed and having constant panic atacks. And I was finally diagnosed w/ a multi-nodular thyroid. So what if my TSH is just normally low? And if it doubled as I got worse, could that mean that 1.58 is hypo for me??? I'm frustrated and frightened and I have insomnia again. I had 2 panic attacks in the last month, for the first time inalmost 2 years.
Thanks for your concern, and if anyone has a good doctor in LA, I'd love a recommendation if we're allowed to do that.
This is artfemme11. Somehow I can't log in under my "real" name, I've asked for new passwords and kept them in my email so I know they're right...those stupid numbers they send. I try to log in, no dice. They also say my username is taken, and of course it is because it's MINE. I finally decided to open another account through a different mailbox.Does anybody else have this problem,or know a way to communicate w/ admin.? I can't even get into my previous posts, yet MedHelp sends me emails regularly on other general topics. So frustrating.
Anyway, new Endo, new labs. Yet another frustrating experience of being told he only goes by the TSH.$th Endo, last one in my medical group. I asked him to help me get my Free T3 and T4 into the upper 1/3 of the range and told him I didn't care what my TSH was , if it's below "normal" it should be, according to my primary doctor, because I have nodules on both lobes, which shrank after she put me on the combination at my request. In other posts that gimel, goolara, barb, tamara etc. have responded to, I posted other labs and described how I did really well w/ cessation of all symptoms when I first went on T3+T4, but later took a dive that I now associate w/ going on generic T3 w/out changing dosage. I started to get what I thought were hyper symptoms: joint pain, dizzy, heart palpitaions, anxious. So my primary cut the T3 in 1/2 and I crashed. Deeply depressed, 15 lbs. gained in 3 weeks, brain fog and distraction, poor vision. I upped the T3 again and the depression, joint pain, fog, and blurry vision went away but I kept gaining weight. Then my Free T3 became too high, while the Free T4 stayed in the lower 1/3 of range.
I figured the ratio had to be off, so rather than my primary and I guessing, I went to this new Endo. I took in 10 years worth of labs that I'd charted, and a written description of all the symptoms ( every single one except constipation ) and a history of the multiple whiplash injuries and concussion I 'd had as well as the toxic exposure I had that I think finally pushed my thyroid over the edge. I wrote a complete family history which includes various kinds of auto immune manifestations including a sister w/ Hashimoto's. I described how my labs had changed for the better w/ meds....lower cholesterol, blood pressure,glucose and creatinine amongst them. I had been on every antidepressant known w/ bad reactions and no positive benefits. W/ addition of T3, depression went completely away in less than a week.I lost 15 lbs. in 3 weeks when I went on meds, and another 5 gradually over the next 4 months without changing diet or exercise . My hair (including pubic) and eyebrows grew back. All the antibody tests for Hashimoto's have come back negative. My cortisol levels are at the high level of range.
The Endo said my TSH was in normal range before I went on meds, and now it's below norm so I shouldn't be on meds. at all. The concept of nodule suppression seems foreign to him. He had no explanation for my symptoms, but said they could be caused by a number of things. When I asked what (several times) he said he doesn't know. The other 3 have said the same thing. I asked what the probability was that I had several ailments to cover the multitude oof symptoms, vs. hypothyroidism that covers them all. He seemed angered. I asked how he explained my symptoms going away w/ medication and he said he didn't know. I get the feeling w/ the Endos that they think I have Munchausen's disorder or that I'm looking up symptoms on the Internet and either somehow faking them or producing them psychsomatically.
Anyway..he reduced my meds to 50 mcg. T4 generic and 25 mcg. Cytomel. I insisted on the brand. When I said that that seemed like a strange ratio, he said "Well based on what you said, your body seems to like T3 better." !!! I didn't know what to do except do it until the next blood test. He wrote a letter to my primary saying he wanted to take me off meds altogether if my TSH remained supressed. She shook her head when she gave me a copy of the letter. So I got the latest labs from him back yesterday. He only did TSH and T3 the first time, though I asked him specifically for both Free's. I called him on it and he said he didn't believe the Free tests were of any value. So this time I forced him to do both. Here are the results:
TSH .422 (.450-4.500 )
T4 Free direct .66 ( ,82-1.77 )
T3 Free serum 3.6 ( 2.0-4.4 )
IGF-1 211 ( 75-212 )
He felt that the TSH was "acceptable", the Free T3 " a little too high", and that there was no meaning to the low Free T4. He said that we had an obvious difference in our opininons and that I should seek help elsewhere.What he said today was that I should " go to that doctor that wrote that book you like so much". That would be "The Thyroid Solution", which I took to his office and showed him that Dr. Aram is fully accredited and not some goofball off the Internet. When I said Dr. Aram is in Texas and I'm in Los Angeles he just shrugged. I sure do get the feeling these guys are threatened by the Internet.
Any thoughts, advice, or opininons? I see my primary tomorrow. I think these people are trying to kill me. Symptoms that have occurred since this newest med change are painfully dry skin, hair not curling as much and dryer, rash, foot cramps, night sweats, odoroous urine and even more weight gain and edema.BTW he says I don't have edema even though I got a neuroma from swollen feet and all the other doctors say they can see it, especially in my face and legs and feet. I gained almost 10 lbs. in the last 12 weeks since I've been seeing him and I'm back to the weight I was before I was treated at all...164. My lifetime body weight is 127-129, and as an older person I would expect to be about 10 lbs. heavier, which is what I was after I first went on meds.
Just one other thing that he says means nothing, but I think is particular to MY body....When I first started complaining that something was wrong with me and my symptoms weren't yet very bad, my TSH was .78. 2 years later it was 1.58. By that time I'd lost about 1/3 of my hair and the outer parts of my eyebrows, was depressed and having constant panic atacks. And I was finally diagnosed w/ a multi-nodular thyroid. So what if my TSH is just normally low? And if it doubled as I got worse, could that mean that 1.58 is hypo for me??? I'm frustrated and frightened and I have insomnia again. I had 2 panic attacks in the last month, for the first time inalmost 2 years.
Thanks for your concern, and if anyone has a good doctor in LA, I'd love a recommendation if we're allowed to do that.
Hey Barb ! How are you doing ? You're just getting up and I'm yet to go to sleep. This insomnia from meds out of whack and a steroid injection in my S.I. joint is kicking my you know what. I don't really get a rush from taking the T3 all at once, and get busy and forget to take the later dose half the time, so taking it all at once is better than being erratic I think. I've heard that some people get a time release form compounded for them. Managed care will love to fight about that one, I bet.
This latest Endo was a pisser...Did talk to his office before I went to him and they assured me he would deal with the Free T concept. At the initial visit he implied that he'd work with me but it was a lie. And so it goes. I've gone through all 4 Endos in my group, including making them let me go to one at the Pituitary Center. All have blown me off, want me to go off meds completely, regardless of symptoms. So thank goodness for my PCP, even if I'm having to basically be my own doctor since thyroid problems are not her specialty.
This latest Endo was a pisser...Did talk to his office before I went to him and they assured me he would deal with the Free T concept. At the initial visit he implied that he'd work with me but it was a lie. And so it goes. I've gone through all 4 Endos in my group, including making them let me go to one at the Pituitary Center. All have blown me off, want me to go off meds completely, regardless of symptoms. So thank goodness for my PCP, even if I'm having to basically be my own doctor since thyroid problems are not her specialty.
Thanks mag, for the info and suggestions. I will try going to my local compounding pharmacy, the pharmacist there is very nice.. I use compounded progesterone cream and get it through CVS mail order, so perhaps I could do that with T3 as well and get time released.Does anyone else use that with success?
I tried Armour about a year and a half ago as I had been feeling very well on the combination and thought if I could take just the one pill it would be good. Stayed on it for several months, felt absolutely awful, depression came back as well as anxiety. Went away when I went back to T4 and T3. The Cytomel is going to be so expensive on Medicare, since they want you to take the generic and that's what threw me off this time, I think. Back on Cytomel now, but now the ratio is off. Think I have to lower the Cytomel if I'm going to up the T4. PCP changed it for me today to 75 mcg T4 and 15 mcg Cytomel. Hope it brings relief. Blessings!
I tried Armour about a year and a half ago as I had been feeling very well on the combination and thought if I could take just the one pill it would be good. Stayed on it for several months, felt absolutely awful, depression came back as well as anxiety. Went away when I went back to T4 and T3. The Cytomel is going to be so expensive on Medicare, since they want you to take the generic and that's what threw me off this time, I think. Back on Cytomel now, but now the ratio is off. Think I have to lower the Cytomel if I'm going to up the T4. PCP changed it for me today to 75 mcg T4 and 15 mcg Cytomel. Hope it brings relief. Blessings!
3.2 would be mid range for freet3. So I'd say at 3.6 you are about right.TFreet4 is too low and could use an increase in my opinion. TSH will be surpressed if you are getting t3 in medication so that is normal. My daughter is 10 and born without a thyroid gland. She is on desiccated ERFA thyroid from Canada and does fantastic on this . Have you ever considered giving desiccated a try since you feel your body needs the t3? U.S. desiccated has changed it's formula (fillers and binders) and it does not work as well for many now. Canadian desiccated is a good choice for many now and can be prescribed by your doctor. I would not use this endo. ever again if I were you. He will not get you well. LA is a big place. Try to get a referal from a compounding pharmacist in your area for a good "tyroid" doctor. Someone who he compounds thyroid medicine for and that believes in t3 when needed. This is how we found outr doctor. It will probably be a regular MD or DO who "gets it " though and not an endo. who usually down play thyroid and focus on dibetes more.. Good luck and God Bless and if need be, make the trip to Texas. LA has lots of flights to Houston. You're worth it!
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I completely agree that your FT4 is way too low and your FT3 is about perfect. I also agree that to increase the T4 med, you would decrease the cytomel.
For those of us on T3 med, it's not uncommon for the TSH to be low. Mine typically stays at < 0.01 and will not go up, short of taking all my med(s) away. My endo doesn't even look at that, so long as my FT's are good.
I don't necessarily agree that a dessicated med would be that great for you, at this point, because you can control your levels easier when you take the T4 and T3 separately. Some people do awesome on the dessicated; however, others don't tolerate them as well.
One thing I might suggest, is that, if you aren't already, you might split your dose of cytomel into 3 doses/day instead of one. If you take 5 mcg in the morning with your levo, 5 mcg between mid morning and lunch, then the other 5 in the afternoon. T3 med is fast acting, so it's into and out of your system relatively quickly; therefore, if you split your dose, you will keep your levels stable throughout the day. Of course, you would have to figure out the timing according to your own schedule, but I wouldn't recommend that you take the cytomel after about 3:00 PM because it might keep you from sleeping. Again, that would depend on your schedule though. I get up at 3:30 am and have to be in bed by 7:30 pm, so I could never take T3 med after about "noonish"