Aa
Stoopid Endos
More of a rant, really. I am still searching for an endocrinologist on the Westside of Los Angeles. I have been to 5, all of whom have insisted I lower my meds because of my low TSH, none of whom tested my FREEs properly ( hello, don't take your meds before the blood test or your T3 level will show too high, doi ) When they lower my meds, particularly T3, I immediately return to symptoms. My PCP has been treating me based on what I ask for and the FREE levels, but this makes her very nervous and she keeps bugging me to find an endo. I finally printed out the entire roster of providers in my area and started researching them online...Yelp and Vitals reviews, etc.
I finally found an endo near me, Board Certified, fabulous reviews, AND a woman who also deals with menopausal issues. Yaay ! So I called over to her practice at The John Wayne Cancer Center only to be told that she had retired in August. The man who answered the phone asked me what my issues are and said he is a doctor there but cannot see the retired doctor's patients. He made a recommendation of another endo in Santa Monica and then quizzed me some more about my problem. When I told him I was taking Cytomel, he said that went against what any doctor in LA would prescribe and against anything learned in medical school ! When I told him of the cessation of my symptoms with it plus T4, and the normalization of my metabolic labs, he said that was highly unusual. NOT. When i mentioned that my hair falls out every time the T3 is lowered, he said and I quote "I know people think hair loss is associated with thyroid but it isn't. That's a dermatological problem." I said it always grows back when the dose is raised and he said he'd never heard of such a thing ! He then said that if I'm doing so well, why do I need an endo ? Good question, except I still don't feel right even though I'm better than I was, still have super dry skin, edema, a rash and hair issues, plus I'm trying to follow my PCP's wishes. GRRRRRrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr. This guy just kept telling me I would NEVER find an endo in LA who would treat me for hypo if my TSH is low no matter what my FREE levels are, or who would treat me with T3. (Yes, the researchers say medical training is the problem, 17 years behind the research.) When I said my bone density had improved a little and the nodules on my thyroid shrank with treatment, he said that was highly unusual too. And when I said I have a rash that the dermatologist says is mucinocis, he said it's a dermatology problem, even though the dermatologist says it's an endocrinology problem.
I'm so discouraged. Oh, and when I mentioned that my rT3 test came back too high, he was quick to say nobody uses that test anymore, not the first time I've heard that. Yet the most advanced research I've read says I'm doing the right thing. I'm having new labs on Weds. after lowering my T4 slightly and raising my Cytomel. I suspect the FREE T3 will be a little high, it feels that way. Sigh.
Nobody has a good doctor in LA ? How is this possible ? And don't tell me to check Top Docs. Useless.The last guy I went to was listed, and he was terrible. My PCP was appalled that he didn't pay attention to symptoms or former experiences with adjustments to my meds. Like gaining 15 lbs. in 3 weeks.
Wits End.
I finally found an endo near me, Board Certified, fabulous reviews, AND a woman who also deals with menopausal issues. Yaay ! So I called over to her practice at The John Wayne Cancer Center only to be told that she had retired in August. The man who answered the phone asked me what my issues are and said he is a doctor there but cannot see the retired doctor's patients. He made a recommendation of another endo in Santa Monica and then quizzed me some more about my problem. When I told him I was taking Cytomel, he said that went against what any doctor in LA would prescribe and against anything learned in medical school ! When I told him of the cessation of my symptoms with it plus T4, and the normalization of my metabolic labs, he said that was highly unusual. NOT. When i mentioned that my hair falls out every time the T3 is lowered, he said and I quote "I know people think hair loss is associated with thyroid but it isn't. That's a dermatological problem." I said it always grows back when the dose is raised and he said he'd never heard of such a thing ! He then said that if I'm doing so well, why do I need an endo ? Good question, except I still don't feel right even though I'm better than I was, still have super dry skin, edema, a rash and hair issues, plus I'm trying to follow my PCP's wishes. GRRRRRrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr. This guy just kept telling me I would NEVER find an endo in LA who would treat me for hypo if my TSH is low no matter what my FREE levels are, or who would treat me with T3. (Yes, the researchers say medical training is the problem, 17 years behind the research.) When I said my bone density had improved a little and the nodules on my thyroid shrank with treatment, he said that was highly unusual too. And when I said I have a rash that the dermatologist says is mucinocis, he said it's a dermatology problem, even though the dermatologist says it's an endocrinology problem.
I'm so discouraged. Oh, and when I mentioned that my rT3 test came back too high, he was quick to say nobody uses that test anymore, not the first time I've heard that. Yet the most advanced research I've read says I'm doing the right thing. I'm having new labs on Weds. after lowering my T4 slightly and raising my Cytomel. I suspect the FREE T3 will be a little high, it feels that way. Sigh.
Nobody has a good doctor in LA ? How is this possible ? And don't tell me to check Top Docs. Useless.The last guy I went to was listed, and he was terrible. My PCP was appalled that he didn't pay attention to symptoms or former experiences with adjustments to my meds. Like gaining 15 lbs. in 3 weeks.
Wits End.
@ valdab: By all means be my guest and hijack ! The more we talk amongst ourselves the better.
I take 50 mcg Cytomel and 100 mcg levthyroxine, which is more than many take. I've been gradually increasing my dosage while measuring my FREE levels, so I've been on all kinds of dosages. Like you, no doctor had ever told me NOT to take the Cytomel before a draw, I had to read that for myself. Three endos lowered my Cytomel after incorrect labs and I also became quickly symptomatic. Grrrrrrrrrrrrrrr. I've tried taking my dose all at once and tried splitting it and didn't notice a difference, but many people find they have to split the dose or they feel too speedy and then crash. It's very individual. If you don't crash, why bother splitting it ? I think people who DO split say not to take it after 3 or 4 pm. Anybody else hear that ? I must have 3" (years worth) of useless labs because of doctor error re: the Cytomel before the draw. How is the average patient supposed to know if the doc doesn't tell you ?
@gimel: Yes, San Diego is too far to go to the doctor. It's at least 4 hours South, without traffic. And there's NEVER no traffic anymore in SO CAL. Thanks for trying :- )
@Barb: Yeah, the guy was a doctor, it rang through on his private line for some reason. I don't know why the endocrinologist I was trying to reach had her offices in the cancer center, but it's a part of the St. Johns Hospital complex in Santa Monica. Nightmare. I'll just keep trying.
Thanks for letting me vent and for the support. Also dealing with a broken elbow, torn ligament in my wrist and other skeletal FX following a trip and fall on a city sidewalk. Too many doctors, too little time, so I'm even grumpier than usual :- \
Here's to wellness. Strength united is stronger !
I take 50 mcg Cytomel and 100 mcg levthyroxine, which is more than many take. I've been gradually increasing my dosage while measuring my FREE levels, so I've been on all kinds of dosages. Like you, no doctor had ever told me NOT to take the Cytomel before a draw, I had to read that for myself. Three endos lowered my Cytomel after incorrect labs and I also became quickly symptomatic. Grrrrrrrrrrrrrrr. I've tried taking my dose all at once and tried splitting it and didn't notice a difference, but many people find they have to split the dose or they feel too speedy and then crash. It's very individual. If you don't crash, why bother splitting it ? I think people who DO split say not to take it after 3 or 4 pm. Anybody else hear that ? I must have 3" (years worth) of useless labs because of doctor error re: the Cytomel before the draw. How is the average patient supposed to know if the doc doesn't tell you ?
@gimel: Yes, San Diego is too far to go to the doctor. It's at least 4 hours South, without traffic. And there's NEVER no traffic anymore in SO CAL. Thanks for trying :- )
@Barb: Yeah, the guy was a doctor, it rang through on his private line for some reason. I don't know why the endocrinologist I was trying to reach had her offices in the cancer center, but it's a part of the St. Johns Hospital complex in Santa Monica. Nightmare. I'll just keep trying.
Thanks for letting me vent and for the support. Also dealing with a broken elbow, torn ligament in my wrist and other skeletal FX following a trip and fall on a city sidewalk. Too many doctors, too little time, so I'm even grumpier than usual :- \
Here's to wellness. Strength united is stronger !
You don't HAVE to split your dose if taking it in the morning works for you. Most people do becuase T3 is so fast-acting that they usually "crash" in the afternoon if they don't split it.
Yes, it's best to take your meds the day before as you normally do and then have blood drawn before you take your T3 the next morning. Due to the volatile nature of T3, it's hard to get an "average" reading like you can with T4. However, even though not taking your meds before the draw might skew the result slightly on the low side, it doesn't skew it nearly as much as recently having taken a dose of T3, i.e. it's much closer to reality.
Yes, it's best to take your meds the day before as you normally do and then have blood drawn before you take your T3 the next morning. Due to the volatile nature of T3, it's hard to get an "average" reading like you can with T4. However, even though not taking your meds before the draw might skew the result slightly on the low side, it doesn't skew it nearly as much as recently having taken a dose of T3, i.e. it's much closer to reality.
...my oversight may have something to do with my Endo never having suggested I split my dose or desist from taking my medication before any blood tests. All this info has come from this invaluable forum (and this PS chimes nicely with the title of this thread)
Thank you for the clarification. I can't believe I was so stupid - why did this not occur to me when I had my last test (I took my T3 about three hours before I had the blood test. I then acted on the correspondingly high T3 results and cut back my dose; I'm now feeling symptomatic again)
Could you confirm that the best scenario would be to split the T3 dose am and pm then have bloods drawn before the am dose? At the moment I take all my T3 in the morning; if I then get my bloods done before the am dose, would the results be skewed the other way? Or is it ok to mark the levels when the T3 is at it's lowest level in the body?
Apologies to artfemme for hijacking her thread!
Could you confirm that the best scenario would be to split the T3 dose am and pm then have bloods drawn before the am dose? At the moment I take all my T3 in the morning; if I then get my bloods done before the am dose, would the results be skewed the other way? Or is it ok to mark the levels when the T3 is at it's lowest level in the body?
Apologies to artfemme for hijacking her thread!
Just to elaborate a bit on gimel's comment...
If you take T4-only meds (generic levothyroxine, Synthroid, Levoxyl, etc.) you can take your meds or not before the blood draw. Of course, if your doctor specifically instructs you, you should follow his advice. The important thing is to be consistent and always or never take your meds before the draw. It's also important to have blood drawn at approximately the same time of day each time since levels vary intraday.
However, if you take meds with T3 in them (generic liothyronine, Cytomel, dessicated - like Armour, ERFA, etc.), then it's important to NOT take the T3 portion before the draw for the reason gimel states. With dessicated, it's impossible to separate the T4 component from the T3, so you have to forego the whole thing until after the draw.
If you take T4-only meds (generic levothyroxine, Synthroid, Levoxyl, etc.) you can take your meds or not before the blood draw. Of course, if your doctor specifically instructs you, you should follow his advice. The important thing is to be consistent and always or never take your meds before the draw. It's also important to have blood drawn at approximately the same time of day each time since levels vary intraday.
However, if you take meds with T3 in them (generic liothyronine, Cytomel, dessicated - like Armour, ERFA, etc.), then it's important to NOT take the T3 portion before the draw for the reason gimel states. With dessicated, it's impossible to separate the T4 component from the T3, so you have to forego the whole thing until after the draw.
T3 is very fast acting, T4 is not. That's why it is best to wait until after blood draw to take your daily dosage of meds with T3 in them.
Sorry to read of your ongoing frustrations. I hope you manage to find a sympathetic Endo soon. I definitely don't feel 'right' - can't decide if it's menopause or thyroid - or both - so I sympathise with your struggles.
One phrase jumped out at me - don't take your meds before a blood test.
I thought it took a while for the bloods to assimilate the meds - hence waiting 6 weeks for blood test when changing dose.
I ask because I took my meds a couple of hours before my last test and my T3 was about 25% higher than the top marker. I've got another test in a couple of weeks and I'd like to do the right thing this time!
One phrase jumped out at me - don't take your meds before a blood test.
I thought it took a while for the bloods to assimilate the meds - hence waiting 6 weeks for blood test when changing dose.
I ask because I took my meds a couple of hours before my last test and my T3 was about 25% higher than the top marker. I've got another test in a couple of weeks and I'd like to do the right thing this time!
COMMUNITY LEADER
Endo Mafia? Wow, another conspiracy theory!! LOL........
Don't mean to make light of your situation; I'm very sorry to hear about your experience. I agree with goolarra about what the guy who answered the phone said. He's answering the phone for heaven's sake; I've never heard of a doctor answering the phone for a place like the John Wayne Cancer Center. Maybe he can't see the retired doctor's patients, because she was an endo, and he's not?
I also agree that LA is a large city and hiding somewhere within, or near, it, is a good thyroid doctor. Remember, you don't necessarily have to have an endo; just someone who is knowledgeable about thyroid issues. That could be another pcp, an internal medicine doctor, a rheumy, etc.
I've found that many doctors don't really want to know your history and past symptoms; they seem to want to start from scratch and form their own opinion - at least the ones I've had, in the past, do that, with the exception of my current pcp and endo, but I got lucky.
I agree that you should make up a sheet of questions to fax or e-mail doctors; you could add a brief summary of what you've been dealing with, along with medications and see what you come up with.
Don't give up; you're bound to find the right doctor eventually.
Don't mean to make light of your situation; I'm very sorry to hear about your experience. I agree with goolarra about what the guy who answered the phone said. He's answering the phone for heaven's sake; I've never heard of a doctor answering the phone for a place like the John Wayne Cancer Center. Maybe he can't see the retired doctor's patients, because she was an endo, and he's not?
I also agree that LA is a large city and hiding somewhere within, or near, it, is a good thyroid doctor. Remember, you don't necessarily have to have an endo; just someone who is knowledgeable about thyroid issues. That could be another pcp, an internal medicine doctor, a rheumy, etc.
I've found that many doctors don't really want to know your history and past symptoms; they seem to want to start from scratch and form their own opinion - at least the ones I've had, in the past, do that, with the exception of my current pcp and endo, but I got lucky.
I agree that you should make up a sheet of questions to fax or e-mail doctors; you could add a brief summary of what you've been dealing with, along with medications and see what you come up with.
Don't give up; you're bound to find the right doctor eventually.
Great advice, thanks.
I was intending to ask those questions, just got blindsided. But I've seen 5 and talked to 9 so far, it's discouraging. Dr. Holtorf is just 45 minutes south. Wish I could afford it. I also typed up a "history and symptoms" list to hand the one I choose, so I don't have to talk about it over and over, and to be brief. Gave it to two...they just glanced at it and put it aside. I REALLY don't understand. There seems to be an Endo Mafia !
Thanks agian.
I was intending to ask those questions, just got blindsided. But I've seen 5 and talked to 9 so far, it's discouraging. Dr. Holtorf is just 45 minutes south. Wish I could afford it. I also typed up a "history and symptoms" list to hand the one I choose, so I don't have to talk about it over and over, and to be brief. Gave it to two...they just glanced at it and put it aside. I REALLY don't understand. There seems to be an Endo Mafia !
Thanks agian.
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Pre-interview these doctors. You can do it over the phone or via fax or online. Make up a questionnaire of the issues really important to you and find doctors that will use T3 meds, will treat clinically and know that TSH is a myth. I made up a multiple guess questionnaire (for conservation of their time) and sent it to all doctors in my insurance plan in my area. It netted a good one, and I only had four to choose from to begin with.