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Help and don't let this happen to you
In the past couple years my Dr. Who is a GP. Has been reducing my eltroxin as my tsh continued to rise .i had a tsh of 7 when he started reducing my eltroxin. For 17 years had 3. Eltroxin Dailey and no other thyroid events . My meds for eltroxin were reduced from 3.-2.-1-0 and when I was taken off eltroxin all together my tsh was 84 and with my tsh at 84 he gave me a prescription for ptu . This is all opposite of how I should have been taken care of . I had a job that I loved as a canola refinery operator at the LDC plant in my home town . Within a week of being given the ptu and no eltroxin I was incapable of being at my work . And believe me the year of rising tsh had worn me down bad . The physical and mental changes are horrible memory troubles , muscle aches every where emotional new places for me a nightmare . Lost my health insurance (my wife's health coverage to )pension and after a while became a deadbeat dad due to no money and little energy to try to pay the bills . When I was a basket case from the ptu shutting down my already low thyroid my Dr gave me numerous notes stating I am under stress and need leave . At some point was sent a letter from LDC saying they decided I have quit my job . It's been so difficult . Sorry for writing a novel . My current issue is after a phone consult with a Endo was put back on eltroxin and given cytomel this brought my tsh down from 84 to 1.5. But my ft4is rising it is 33. And still rising anyone know why. . Am in Canada Saskatchewan waiting to see Endo for over a year . Sad that so many people die on waiting lists or have their illness advance a lot while waiting .i have stopped blindly believing Drs and have been taught a lot on this site and the web.
Thankyou for the well thought out and detailed information . I certainly needed thyroid 101 . Yes it does seem odd after reading your response and thinking back to symptoms and treatments . It is all making sense in a way I can be confident knowing what has happened . Thankyou to you and Dr. Mark Lupo . Decreasing my eltroxin as a treatment was the very reason why my tsh continued to rise ,and being taken off eltroxin and prescribed ptu was possibly the most incompetent treatment . Seems as though all I needed was to be put back on eltroxin at a increased dosage probably back to 300 mcg exactly where I was when my Dr. ,decided to decrease my eltroxin when my tsh was only at 7 The top of reference range (tsh) is 5.5 .Am curious about what damage this may have done ( other than walking a ragged mile ). Why the Cytomel is the source of what gives me some energy is possibly still due to not enough eltroxin . Today I broke up my Cytomel intake and after taking half feel same energy as taking all 12.5 at once as you told me thanks again .
COMMUNITY LEADER
Just a bit of Thyroid 101 and forgive me if I tell you things you already know, but it might help you understand a bit better, how the meds work.
When the thyroid is working properly, the pituitary scans for thyroid hormones and when they are low, the pituitary produces TSH to stimulate the thyroid into producing thyroid hormones. When it works, it works well, but when communication breaks down, we have a mess on our hands.
The thyroid produces 2 main hormones. Those are T4 and T3, but mostly T4 and very little T3. Approximately 95% of the T4 produced is bound by protein and can't be used; therefore, we look at the unbound (Free) portion to see how much there is for use. Free T4 can't be used directly. It's a storage hormone and must be converted to T3, prior to use. Most of the conversion is done in the liver, but some is also done in other organs, including the brain and pituitary gland.
Like T4, most of the T3 produced (either by the thyroid or conversion) is bound by protein and can't be used; therefore, we look at the unbound (Free) portion to determine what's available for the individual cells. Free T3 is the hormone that correlates best with symptoms.
When our thyroid doesn't work, we take the medication and try to keep things as close to the way our body would do it, if it could. Therefore, since the body naturally produces mostly T4, it's common for doctors to prescribe a T4 medication (your Eltroxin). This increases our FT4 levels, so that we have enough to be converted to T3, just like our thyroid would do. There are some of use who don't convert properly, therefore, we have to add a source of T3 in order to bring up our levels.
Rule of thumb is to keep FT4 at about mid range (with your range, that would be 14). Most of us feel best with FT3 in the upper half to upper third of its range. You don't have an FT3 result, so we don't know where your level is.
I can't imagine what prompted the endo to give you, both, eltroxin and cytomel at the same time; I'm sure he was reacting only to the high TSH and was in a hurry to bring it down. Apparently, he doesn't know that TSH neither causes, nor alleviates symptoms. Much better to adjust the FT3 and FT4 to alleviate symptoms.
It takes approximately 4-6 weeks for the Eltroxin (T4 med) to reach full potential in your blood, which then increases FT4 level and through conversion increases FT3 as well. It's customary to start at a relatively low dose of T4 med (25-50 mcg) and work up as needed, testing every 6-8 weeks until both FT4 and FT3 are stable and symptoms have been alleviated. Increases are usually done in 12-25 mcg increments to prevent going to too high a dose.
T3 med (cytomel) is a very fast acting med and is much more powerful than T4 med. Cytomel is, typically, only given if FT4 levels rise high and FT3 levels continue to lag behind. Cytomel, too, is given in very small amounts and increased in small increments. After you take cytomel, it peaks in your blood within 2-4 hours and is completely gone a few hours later; this is why we recommend taking it in split dosages. For instance, I take 10 mcg of generic cytomel/day. I take 5 mcg in the morning, with my T4 med, then around noon or 1:00, I take the other 5 mcg, so I have enough to stay with me all day.
In your case, I have to wonder if you even need the cytomel. The Eltroxin is driving up your FT4 and with the added cytomel, it would appear that very little needs to be converted to FT3 for us.
Yes, I'm guessing your thyroid is small, because of the antibody action. Mine has gotten so small my endo can no longer feel it.
When the thyroid is working properly, the pituitary scans for thyroid hormones and when they are low, the pituitary produces TSH to stimulate the thyroid into producing thyroid hormones. When it works, it works well, but when communication breaks down, we have a mess on our hands.
The thyroid produces 2 main hormones. Those are T4 and T3, but mostly T4 and very little T3. Approximately 95% of the T4 produced is bound by protein and can't be used; therefore, we look at the unbound (Free) portion to see how much there is for use. Free T4 can't be used directly. It's a storage hormone and must be converted to T3, prior to use. Most of the conversion is done in the liver, but some is also done in other organs, including the brain and pituitary gland.
Like T4, most of the T3 produced (either by the thyroid or conversion) is bound by protein and can't be used; therefore, we look at the unbound (Free) portion to determine what's available for the individual cells. Free T3 is the hormone that correlates best with symptoms.
When our thyroid doesn't work, we take the medication and try to keep things as close to the way our body would do it, if it could. Therefore, since the body naturally produces mostly T4, it's common for doctors to prescribe a T4 medication (your Eltroxin). This increases our FT4 levels, so that we have enough to be converted to T3, just like our thyroid would do. There are some of use who don't convert properly, therefore, we have to add a source of T3 in order to bring up our levels.
Rule of thumb is to keep FT4 at about mid range (with your range, that would be 14). Most of us feel best with FT3 in the upper half to upper third of its range. You don't have an FT3 result, so we don't know where your level is.
I can't imagine what prompted the endo to give you, both, eltroxin and cytomel at the same time; I'm sure he was reacting only to the high TSH and was in a hurry to bring it down. Apparently, he doesn't know that TSH neither causes, nor alleviates symptoms. Much better to adjust the FT3 and FT4 to alleviate symptoms.
It takes approximately 4-6 weeks for the Eltroxin (T4 med) to reach full potential in your blood, which then increases FT4 level and through conversion increases FT3 as well. It's customary to start at a relatively low dose of T4 med (25-50 mcg) and work up as needed, testing every 6-8 weeks until both FT4 and FT3 are stable and symptoms have been alleviated. Increases are usually done in 12-25 mcg increments to prevent going to too high a dose.
T3 med (cytomel) is a very fast acting med and is much more powerful than T4 med. Cytomel is, typically, only given if FT4 levels rise high and FT3 levels continue to lag behind. Cytomel, too, is given in very small amounts and increased in small increments. After you take cytomel, it peaks in your blood within 2-4 hours and is completely gone a few hours later; this is why we recommend taking it in split dosages. For instance, I take 10 mcg of generic cytomel/day. I take 5 mcg in the morning, with my T4 med, then around noon or 1:00, I take the other 5 mcg, so I have enough to stay with me all day.
In your case, I have to wonder if you even need the cytomel. The Eltroxin is driving up your FT4 and with the added cytomel, it would appear that very little needs to be converted to FT3 for us.
Yes, I'm guessing your thyroid is small, because of the antibody action. Mine has gotten so small my endo can no longer feel it.
Thank you very much , did not know about dividing cytomel and achieving duration of use . ( sorry I may have accidentally pressed report button while scrolling , had no cancel button so I closed and reopened forum without sending anything on report but not sure what may have happened.). My reference range for ft4 is 9.0-19.0. Current ft4 is 33. Also did not know eltroxin can increase ft4 . Did have a ultrasound performed but not interpreted from a Endo . My GP. Said thyroid ultrasound observation is my thyroid is undersized in proportion to my body .(I think maybe hashimotos devouring thyroid like I eat chicken wings at a buffett ! Hahaha) You are a fantastic help in my quest for the truth of one of life's many curve balls .Thankyou Barb . Dr. Mark Lupo has answered some questions if I could afford it would fly to Miami for appointment . Individuals like you and Dr. Lupo are awesome .
COMMUNITY LEADER
Are you taking the cytomel all at once, at the same time as you take the Eltroxin? Typically, a medication with T3, such as cytomel is split into multiple dosages throughout the day... usually 2, depending on the total dose - one first thing in the morning and the other around noon or early afternoon, but not after about 3:00 pm as it can interfere with sleep. T3 is a fast acting med and it only stays in your system for a few hours, so it you take it all at once, you get the whole effect all at once, then have nothing for later. Splitting the dose keeps the FT3 level stable throughout the day.
That's one observation. The other, is that obviously, your Eltroxin dosage is too high, since it's driving your FT4 way up. Some of that FT4 will be converted to FT3 and eventually, with the added cytomel, you will start having hyper symptoms. What's the reference range for the FT4? Ranges vary lab to lab and have to come from your own report.
In my opinion, any doctor prescribing a T3 medication and not testing Free T3 every time the order FT4 and TSH, is bordering on malpractice. Ask your endo to test the FT3 with the FT4 and TSH.
Hashimoto's is the most common cause of hypothyroidism in the developed world, so some doctors don't think it necessary to test for it and it won't change the treatment. However, if you get tested and have positive antibodies, you have a better idea of what will transpire as time goes on, because the antibodies are continually destroying thyroid tissue, so your dosages of thyroid hormones have to keep up with the destruction.
The 2 antibody tests you need are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb). You need them both because they are both markers for Hashimoto's and some of us have one or the other, some have both.
That's one observation. The other, is that obviously, your Eltroxin dosage is too high, since it's driving your FT4 way up. Some of that FT4 will be converted to FT3 and eventually, with the added cytomel, you will start having hyper symptoms. What's the reference range for the FT4? Ranges vary lab to lab and have to come from your own report.
In my opinion, any doctor prescribing a T3 medication and not testing Free T3 every time the order FT4 and TSH, is bordering on malpractice. Ask your endo to test the FT3 with the FT4 and TSH.
Hashimoto's is the most common cause of hypothyroidism in the developed world, so some doctors don't think it necessary to test for it and it won't change the treatment. However, if you get tested and have positive antibodies, you have a better idea of what will transpire as time goes on, because the antibodies are continually destroying thyroid tissue, so your dosages of thyroid hormones have to keep up with the destruction.
The 2 antibody tests you need are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb). You need them both because they are both markers for Hashimoto's and some of us have one or the other, some have both.
Presently taking 12.5 cytomel and 200 mcg eltroxin ft3 not being checked . No test for hashimotos . Thank you for responses .
COMMUNITY LEADER
I remember posting on your original thread, not too long ago. I'm very sorry for the treatment you've gotten. Your doctor is obviously not a thyroid doctor. You're right that it's so sad, people can't get the treatment they need.
TSH is not the best indicator of actual thyroid hormone status; however, with yours rising, as it was, your doctor should have known better.
It would appear that your dosage of Eltroxin (T4 medication) may be too high, if it's driving up your FT4 that much. Either that or you could have a conversion issue. FT4 has to be converted to FT3, which is the hormone actually used by the cells. Some of us don't convert adequately so we have to have a source of T3 added to our medication.
You said your doctor has added Cytomel, which "is" T3, so that leaves me with more questions. First off what are your actual dosages of Eltroxin and Cytomel? And have you been tested for Free T3? Any doctor prescribing a T3 medication, should also be testing Free T3 every time TSH and FT4 are tested, to make sure levels are stable.
I understand that in Canada, you are under the National Health rules and may not be able to obtain all the necessary testing.
Have you been tested for Hashimoto's Thyroiditis?
Sorry for so many questions, but your response could help us give some answers.
TSH is not the best indicator of actual thyroid hormone status; however, with yours rising, as it was, your doctor should have known better.
It would appear that your dosage of Eltroxin (T4 medication) may be too high, if it's driving up your FT4 that much. Either that or you could have a conversion issue. FT4 has to be converted to FT3, which is the hormone actually used by the cells. Some of us don't convert adequately so we have to have a source of T3 added to our medication.
You said your doctor has added Cytomel, which "is" T3, so that leaves me with more questions. First off what are your actual dosages of Eltroxin and Cytomel? And have you been tested for Free T3? Any doctor prescribing a T3 medication, should also be testing Free T3 every time TSH and FT4 are tested, to make sure levels are stable.
I understand that in Canada, you are under the National Health rules and may not be able to obtain all the necessary testing.
Have you been tested for Hashimoto's Thyroiditis?
Sorry for so many questions, but your response could help us give some answers.
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