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Abusive Endo- I want to cry
I'm now looking for yet another Endo.
My old Dr. retired suddenly in 5/16. I was doing labs every 6 mos and set for another visit in June. I was feeling relatively regulated, though not perfect, and had been with her for 7 years. My B12 and D had been low and I was supplementing, still getting my numbers higher. I did not have thyroid antibodies. She believed me to have T3 conversion issues, so I searched for a new Endo who would let me continue on Cytomel. It took months to get in to the new recommended practice and I finally saw the new Dr. in Aug 2016. She was arrogant and rude, but if she knows what she's talking about I figured I could deal with a gruff bedside manner. She ordered blooswork and I saw her again in 11/16. She said I was on way too much T3 and she believed I had absorption issues, not conversion and did not believe in looking at Reverse T3. She did not like my labs.
TSH <0.01 (.40-4.5)
T3 free 7.2 (2.3-4.2)
T4 free .9 (.8-1.8)
She changed me from my current 50mcg Tirosint and 25mcg Cytomel AM & PM to 150mcg Tirosint only (no T3). She also sent me to a Gastroenterologist to look into absorption issues. They did blood work, stool testing and a colonoscopy and endoscopy and ruled out Celiac and all other absorption issues.
I saw the Endo again this morning after 8 weeks on the 125mcg Tirosint. I have been feeling awful. Losing hair, highly sensitive to cold, body temp 96.5 most evenings, dry itchy skin, brain fog, no energy hits like a bus by 2pm daily, brittle nails- I'm miserable. She was her normal gruff as she walked in and asked what the Gastro had found. I started to tell her (her office had all the findings in late December) and she cut me off and said "You are not my only patient- start back at the beginning with more details so I remember." She then cut me off as I spoke and told me I was speaking too fast. After I related how I was feeling she looked at me and said "I get you don't feel well, but you need to stop attacking me." I was so caught off guard. I had my mom with me- I'm in my 40s, but we were out at breakfast together and she's very experienced with thyroid issues herself and I thought having somebody else to hear and ask questions would be good. SO glad she heard how this doctor treated me! I replied "I'm sorry, I don't understand how I'm attacking you." Her response- "You wouldn't understand would you since I'm the doctor and you are not."
She asked me what I ate in a typical day and went on to say I felt bad because I was not eating enough protein. She thought I'm having glycemic issues and asked what I ate and when. When I gave a random day's example and she said my eating was to blame, specifically my snack of a banana and a few pretzels around 11. I said "I'm not understanding how a few carbs at 11 would make me feel so tired I can't stand up at 2 when I feel that way every day and there are many days my snack includes protein and that was not an issue before we took me off the Cytomel." I then got yelled at again- "You need to stop being aggressive and attacking me." I felt like crying. I'm the most soft spoken person. It was all I could do to not just walk right out! I said I would eat more protein and asked if she would add Cytomel back. She agreed to try a compounded T4/T3. I made a follow up appointment, but certainly won't be back. Hoping I can feel human again on the new med while I try to find and get in with a new doctor.
She said the lab messed up and did not do the free tests, so my labs after 8 weeks on the 150mcg Tirosint were useless. Here is what she gave me today:
TSH 0.015 (0.45-4.5)
T4 12.6 (4.5-12)
T3 130 (71-180)
My Gastro did order full blood work in late Dec. and these levels still need to come up:
D 43
B12 644
Ferritin 60 (was 109 at last testing 1/16)
I'm so upset! On top of feeling quite lousy I'm still in shock over how I was treated by this doctor today (there was much more beyond what I have shared!). I made an appointment with a highly regarded naturopathic doctor who is also a registered dietician to discuss my eating and how to supplement better to get my D, B2 and ferritin up. Her office is supposed to call me back with any recommended thyroid doctors or endos.
Mostly venting- but any thought's on my labs? I pick up the new Rx at the compounding pharmacy tomorrow, so I'm not even sure what she has prescribed other than she said T3/T4 combo. She did not like Armour for me.
My old Dr. retired suddenly in 5/16. I was doing labs every 6 mos and set for another visit in June. I was feeling relatively regulated, though not perfect, and had been with her for 7 years. My B12 and D had been low and I was supplementing, still getting my numbers higher. I did not have thyroid antibodies. She believed me to have T3 conversion issues, so I searched for a new Endo who would let me continue on Cytomel. It took months to get in to the new recommended practice and I finally saw the new Dr. in Aug 2016. She was arrogant and rude, but if she knows what she's talking about I figured I could deal with a gruff bedside manner. She ordered blooswork and I saw her again in 11/16. She said I was on way too much T3 and she believed I had absorption issues, not conversion and did not believe in looking at Reverse T3. She did not like my labs.
TSH <0.01 (.40-4.5)
T3 free 7.2 (2.3-4.2)
T4 free .9 (.8-1.8)
She changed me from my current 50mcg Tirosint and 25mcg Cytomel AM & PM to 150mcg Tirosint only (no T3). She also sent me to a Gastroenterologist to look into absorption issues. They did blood work, stool testing and a colonoscopy and endoscopy and ruled out Celiac and all other absorption issues.
I saw the Endo again this morning after 8 weeks on the 125mcg Tirosint. I have been feeling awful. Losing hair, highly sensitive to cold, body temp 96.5 most evenings, dry itchy skin, brain fog, no energy hits like a bus by 2pm daily, brittle nails- I'm miserable. She was her normal gruff as she walked in and asked what the Gastro had found. I started to tell her (her office had all the findings in late December) and she cut me off and said "You are not my only patient- start back at the beginning with more details so I remember." She then cut me off as I spoke and told me I was speaking too fast. After I related how I was feeling she looked at me and said "I get you don't feel well, but you need to stop attacking me." I was so caught off guard. I had my mom with me- I'm in my 40s, but we were out at breakfast together and she's very experienced with thyroid issues herself and I thought having somebody else to hear and ask questions would be good. SO glad she heard how this doctor treated me! I replied "I'm sorry, I don't understand how I'm attacking you." Her response- "You wouldn't understand would you since I'm the doctor and you are not."
She asked me what I ate in a typical day and went on to say I felt bad because I was not eating enough protein. She thought I'm having glycemic issues and asked what I ate and when. When I gave a random day's example and she said my eating was to blame, specifically my snack of a banana and a few pretzels around 11. I said "I'm not understanding how a few carbs at 11 would make me feel so tired I can't stand up at 2 when I feel that way every day and there are many days my snack includes protein and that was not an issue before we took me off the Cytomel." I then got yelled at again- "You need to stop being aggressive and attacking me." I felt like crying. I'm the most soft spoken person. It was all I could do to not just walk right out! I said I would eat more protein and asked if she would add Cytomel back. She agreed to try a compounded T4/T3. I made a follow up appointment, but certainly won't be back. Hoping I can feel human again on the new med while I try to find and get in with a new doctor.
She said the lab messed up and did not do the free tests, so my labs after 8 weeks on the 150mcg Tirosint were useless. Here is what she gave me today:
TSH 0.015 (0.45-4.5)
T4 12.6 (4.5-12)
T3 130 (71-180)
My Gastro did order full blood work in late Dec. and these levels still need to come up:
D 43
B12 644
Ferritin 60 (was 109 at last testing 1/16)
I'm so upset! On top of feeling quite lousy I'm still in shock over how I was treated by this doctor today (there was much more beyond what I have shared!). I made an appointment with a highly regarded naturopathic doctor who is also a registered dietician to discuss my eating and how to supplement better to get my D, B2 and ferritin up. Her office is supposed to call me back with any recommended thyroid doctors or endos.
Mostly venting- but any thought's on my labs? I pick up the new Rx at the compounding pharmacy tomorrow, so I'm not even sure what she has prescribed other than she said T3/T4 combo. She did not like Armour for me.
COMMUNITY LEADER
I agree that you should not have been taken completely off the cytomel - that's why I said in my original post that the T4 med could have been increased and the cytomel decreased, instead of just stopped. It's never a good idea to make huge changes, all at once with thyroid issues.
I also agree that the original dosage is usually not the final dosage, but this doctor seems to think she's so good, she's only going to have to do it once... Sorry about her luck!! :-)
The 57 mcg T4 and 13.5 mcg T3 is a long way off from what you were at before, so she took you from one extreme to another. It's going to take your body some time to adjust, then you'll need to retest and adjust our dosages.
It takes 4-6 weeks for the T4 dosage change to take full effect and you'll be coming down from 150 to 57 mcg and you'll be getting all your T3 at once, since it's with the T4 and you can't split it to keep your FT3 level stable through the day.
I was going to suggest that you talk to the pharmacist about possible doctors. They often know which ones prescribe what medications and can recommend the best ones. It's definitely worth giving the ones a call that were recommended and I'm glad you're feeling better about things today. I suggest you start calling asap. I'd set up an appointment with both and see which one you like the best. Some doctors even do "meet and greet" appointments that don't cost anything and they aren't treating you so you don't have to listen to what they say; you might check and see if either of them do that.
I also agree that the original dosage is usually not the final dosage, but this doctor seems to think she's so good, she's only going to have to do it once... Sorry about her luck!! :-)
The 57 mcg T4 and 13.5 mcg T3 is a long way off from what you were at before, so she took you from one extreme to another. It's going to take your body some time to adjust, then you'll need to retest and adjust our dosages.
It takes 4-6 weeks for the T4 dosage change to take full effect and you'll be coming down from 150 to 57 mcg and you'll be getting all your T3 at once, since it's with the T4 and you can't split it to keep your FT3 level stable through the day.
I was going to suggest that you talk to the pharmacist about possible doctors. They often know which ones prescribe what medications and can recommend the best ones. It's definitely worth giving the ones a call that were recommended and I'm glad you're feeling better about things today. I suggest you start calling asap. I'd set up an appointment with both and see which one you like the best. Some doctors even do "meet and greet" appointments that don't cost anything and they aren't treating you so you don't have to listen to what they say; you might check and see if either of them do that.
COMMUNITY LEADER
Wow, I'm pretty much in shock and kind of wondering if you've seen some of my doctors...lol I'm beginning to wonder if rudeness is becoming a universal problem among the medical profession, these days.
That said - I do have to say, I wouldn't have liked your first set of labs either, as your Free T3 was way too over range and your Free T4 was on the floor of the range, but she was probably only looking at TSH. However, instead of completely changing everything, my recommendation would have been to decrease the cytomel and increase the T4 med to get a better balance between the Free T4 and Free T3 and it could all have been done without being rude. :-) Even though Free T3 is the hormone that our body uses, directly, we still have to have an adequate amount of Free T4... You couldn't know whether you had a conversion issue or not, because you didn't have enough Free T4 to convert.
Typically, we aim to get Free T4 to mid range, then if Free T3 doesn't follow suit, we consider there to be a conversion issue.
I'm confused as to your current dosage of Tirosint... First you said "She changed me from my current 50mcg Tirosint and 25mcg Cytomel AM & PM to 150mcg Tirosint only (no T3)". Then later, you said "I saw the Endo again this morning after 8 weeks on the 125mcg Tirosint." Then later, you said "so my labs after 8 weeks on the 150mcg Tirosint were useless."
I don't mean to be nit-picky, but there's a big difference between 125 mcg and 150 mcg... From what I'm understanding, when you started seeing this doctor, you were taking 50 mcg T4 and 50 mcg cytomel (T3) - 25 mcg in the morning and 25 mcg in the afternoon; is that correct?
Since T3 is fast acting and doesn't stay in your system very long, then suddenly you're not getting so much, it would take some time for your body to adjust to not having it. However, according to your latest labs, your Total T3 is over mid range, so there's a good chance that your conversion may not be as bad as you think it is.
With your T4 at the very top of the range after the 8 weeks, I don't think you need that much T4 med, though. Are you going to be staying on the Tirosint, when you start taking the T4/T3 combo? If so, that will be way too much T4.
Your Ferritin is not too bad at 60. Optimal is about 70, so if you're supplementing, you don't have far to go.
For B-12, the best supplements are liquid or sublingual methylcolbalamin, because that's a "body ready" form that doesn't have to be converted in order to be used. Sublinguals are absorbed into the tiny blood vessels under your tongue, so they bypass the stomach in case there are absorption issues, otherwise liquids are better absorbed than pills. Most ranges for B-12 go to around 900-1100 and I, personally, find that I have to stay around that 1100 point in order to keep symptoms of deficiency from creeping in.
You don't have too far to go to get your vitamin D optimal, either... If you're supplementing daily and keep it up with 1000 - 2000 IU/day, you should be good, but you should retest in few months to make sure you're getting up where you need to be.
It's necessary to keep in mind that vitamin B-12 or vitamin D deficiencies can cause some hypothyroid like symptoms.
There are certainly a lot of worse things you could snack on than a banana and some pretzels. Some peanut butter or yogurt would be good. But there is such a thing as getting too much protein, too... my doctor did that to me and instead of losing weight I gained more, so don't let them push you into that trap, either. Typically, fruit should be limited to a single serving/day, for most of us, because of the sugar it contains, which is a simple a carb. I've learned that a small full fat yogurt does better than a piece of fruit, because the fat in the yogurt doesn't spike my blood glucose, which in turn doesn't spike my insulin, which in turn doesn't store my fat...lol
That said - I do have to say, I wouldn't have liked your first set of labs either, as your Free T3 was way too over range and your Free T4 was on the floor of the range, but she was probably only looking at TSH. However, instead of completely changing everything, my recommendation would have been to decrease the cytomel and increase the T4 med to get a better balance between the Free T4 and Free T3 and it could all have been done without being rude. :-) Even though Free T3 is the hormone that our body uses, directly, we still have to have an adequate amount of Free T4... You couldn't know whether you had a conversion issue or not, because you didn't have enough Free T4 to convert.
Typically, we aim to get Free T4 to mid range, then if Free T3 doesn't follow suit, we consider there to be a conversion issue.
I'm confused as to your current dosage of Tirosint... First you said "She changed me from my current 50mcg Tirosint and 25mcg Cytomel AM & PM to 150mcg Tirosint only (no T3)". Then later, you said "I saw the Endo again this morning after 8 weeks on the 125mcg Tirosint." Then later, you said "so my labs after 8 weeks on the 150mcg Tirosint were useless."
I don't mean to be nit-picky, but there's a big difference between 125 mcg and 150 mcg... From what I'm understanding, when you started seeing this doctor, you were taking 50 mcg T4 and 50 mcg cytomel (T3) - 25 mcg in the morning and 25 mcg in the afternoon; is that correct?
Since T3 is fast acting and doesn't stay in your system very long, then suddenly you're not getting so much, it would take some time for your body to adjust to not having it. However, according to your latest labs, your Total T3 is over mid range, so there's a good chance that your conversion may not be as bad as you think it is.
With your T4 at the very top of the range after the 8 weeks, I don't think you need that much T4 med, though. Are you going to be staying on the Tirosint, when you start taking the T4/T3 combo? If so, that will be way too much T4.
Your Ferritin is not too bad at 60. Optimal is about 70, so if you're supplementing, you don't have far to go.
For B-12, the best supplements are liquid or sublingual methylcolbalamin, because that's a "body ready" form that doesn't have to be converted in order to be used. Sublinguals are absorbed into the tiny blood vessels under your tongue, so they bypass the stomach in case there are absorption issues, otherwise liquids are better absorbed than pills. Most ranges for B-12 go to around 900-1100 and I, personally, find that I have to stay around that 1100 point in order to keep symptoms of deficiency from creeping in.
You don't have too far to go to get your vitamin D optimal, either... If you're supplementing daily and keep it up with 1000 - 2000 IU/day, you should be good, but you should retest in few months to make sure you're getting up where you need to be.
It's necessary to keep in mind that vitamin B-12 or vitamin D deficiencies can cause some hypothyroid like symptoms.
There are certainly a lot of worse things you could snack on than a banana and some pretzels. Some peanut butter or yogurt would be good. But there is such a thing as getting too much protein, too... my doctor did that to me and instead of losing weight I gained more, so don't let them push you into that trap, either. Typically, fruit should be limited to a single serving/day, for most of us, because of the sugar it contains, which is a simple a carb. I've learned that a small full fat yogurt does better than a piece of fruit, because the fat in the yogurt doesn't spike my blood glucose, which in turn doesn't spike my insulin, which in turn doesn't store my fat...lol
3 Comments
Thank you! Yes- typing error on my part. I was on 50 Tirosint and 50 (25/25) Cytomel when I first saw this Dr. In Nov. She put me on 150 Tirosint only. I will not be taking any Tirosint now, just the compounded T3/T4 I pick up this afternoon. I'll update with the dosage.
I had been on 50 Tirosint, 25 Cytomel am and 5 Cytomel pm for 6 months in 2015 and was still not feeling optimal. That's when old Dr upped evening cytomel from 5 to 25. I was on the 50 T4 and 50 (25/25) T3 for 11 months when this new Dr. said T3 was way too high and switched me to 150 T4 only. No wonder I've felt miserable these past 2 months!
My old Dr looked at reverse T3 and mine was high. This Dr said Reverse T3 is bogus and worthless.
This Dr. said my labs from last week were useless and gave her no info because they ran T3 and T4 and not Free T3 or Free T4, so she could not compare.
I currently alternate 5,000 IU and 10,000 IU of D, per my last Dr. I started at a level of 12 several years ago. Been hovering in the 30s. 43 is my highest, but old Dr said she wanted me minimum of 60.
I do a sublingual B12. Have for years.
I teach Pre K and have snack at a set time every day. I often have a small greek yogurt, or cheese and almonds. Every day varries. It just happens the first thing I told the Dr. was a banana and some pretzels and she jumped on that. When I tried to tell her I get that crashing low daily regardless of my snack she told me to stop attacking her.
My Mom has seen this Naturopathic Dr and said she is excellent. I have not seen her yet, just spoke with the nurse and set and appointment- 3 weeks out. I'll definitely be discussing all of this with her!
I had been on 50 Tirosint, 25 Cytomel am and 5 Cytomel pm for 6 months in 2015 and was still not feeling optimal. That's when old Dr upped evening cytomel from 5 to 25. I was on the 50 T4 and 50 (25/25) T3 for 11 months when this new Dr. said T3 was way too high and switched me to 150 T4 only. No wonder I've felt miserable these past 2 months!
My old Dr looked at reverse T3 and mine was high. This Dr said Reverse T3 is bogus and worthless.
This Dr. said my labs from last week were useless and gave her no info because they ran T3 and T4 and not Free T3 or Free T4, so she could not compare.
I currently alternate 5,000 IU and 10,000 IU of D, per my last Dr. I started at a level of 12 several years ago. Been hovering in the 30s. 43 is my highest, but old Dr said she wanted me minimum of 60.
I do a sublingual B12. Have for years.
I teach Pre K and have snack at a set time every day. I often have a small greek yogurt, or cheese and almonds. Every day varries. It just happens the first thing I told the Dr. was a banana and some pretzels and she jumped on that. When I tried to tell her I get that crashing low daily regardless of my snack she told me to stop attacking her.
My Mom has seen this Naturopathic Dr and said she is excellent. I have not seen her yet, just spoke with the nurse and set and appointment- 3 weeks out. I'll definitely be discussing all of this with her!
The only thing I agree with this doctor about was that your Free T3 was too high... perhaps it might have been better is you'd have split the 25 mcg of T3 in half, rather than simply adding another whole 25 mcg, but that's all water under the bridge now...
I certainly don't blame you for not going back to this doctor; I don't think any of us would want to do that.
Reverse T3 is not "bogus"... Free T4 is converted to, either, Free T3 or RT3; some say it's the body's way of preventing too much Free T3; since your RT3 was high, that could indicate that you already had too much Free T3, so your body was converting to RT3.
It will be interesting to see what the actual dosage of the T4/T3 combo the doctor prescribed... Please let us know when you pick it up...
An afternoon crash, if often related to adrenal issues.
I certainly don't blame you for not going back to this doctor; I don't think any of us would want to do that.
Reverse T3 is not "bogus"... Free T4 is converted to, either, Free T3 or RT3; some say it's the body's way of preventing too much Free T3; since your RT3 was high, that could indicate that you already had too much Free T3, so your body was converting to RT3.
It will be interesting to see what the actual dosage of the T4/T3 combo the doctor prescribed... Please let us know when you pick it up...
An afternoon crash, if often related to adrenal issues.
Just spoke with a very knowledgeable compounding pharmacist when I picked up the Rx. I have been given 1.5 grain 90MG or 57mcg T4 and 13.5 mcg T3. She asked what I had been on prior, and why the change to compounded. I filled her in a bit. She thought Tirosint and Cytomel were excellent, but the advantage to compounded is the ability to tweak incrementally and said the starting Rx is hardly the final for most of her clients. She said it was unusual for somebody who had been on Ctyomel, and especially the high dose I had been on, to be take off of it completely, cold turkey, and that can wreak havoc as it is a huge adjustment.
She gave me two names of endos who regularly send Rx's to be filled and who prescribe both T4 and T3 that she had very good opinions of.
Feeling more positive today.
She gave me two names of endos who regularly send Rx's to be filled and who prescribe both T4 and T3 that she had very good opinions of.
Feeling more positive today.
It is pathetic that the Endo switched your from Tyrosine plus T3 to Tyrosine only with no consideration of whether you converted T4 to T3 well. And then hd the gall to basically blame you and your dietary habits for the resultant symptoms. I mean it is basic problem solving that when new problems occur, you look for what changed that might have caused the problems. How could she overlook the huge change in meds and grasp for the possibility that it was something else entirely: your diet?
At any rate I would have nothing further to do with that doctor. You donned to find out from either the doctor or the pharmacy what amount of T4 and T3 she prescribed. When you have that info, perhaps we can help assess if it is likely to be enough.
Also, in addition to getting the Naturopathic doctor to fix your D, B12 and ferritin levels, I am surprised he didn't volunteer to help with your thyroid problem. Naturopathic doctors do that every day. I would find out about the mew med and consult with us about the adequacy, and then ask the Naturopath to treat you.
At any rate I would have nothing further to do with that doctor. You donned to find out from either the doctor or the pharmacy what amount of T4 and T3 she prescribed. When you have that info, perhaps we can help assess if it is likely to be enough.
Also, in addition to getting the Naturopathic doctor to fix your D, B12 and ferritin levels, I am surprised he didn't volunteer to help with your thyroid problem. Naturopathic doctors do that every day. I would find out about the mew med and consult with us about the adequacy, and then ask the Naturopath to treat you.
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