# My Dr Stinks and I'm venting



## jfoxwvu (Mar 5, 2011)

Hello, I'm a pharmacist who graduated from WVU in 2003 with my PharmD. I'm mainly here to complain haha! When I was a child I was treated with PTU for Graves disease and after 2 treatment periods of 1 year each (had 1 relapse in between) my thyroid finally normalized. I had it checked every year up until my high school/college years. In 2001 I had a physical and was put on synthroid 25mcg because my TSH was high. Over the years my dose was increased every so often and now I'm on levothyroxine 250mcg.
To be honest I haven't really felt as good as I did when I was in college but up until now I just thought it was part of getting old. I had a TSH done in Nov 2010 and it was 1.7 (I felt better then but still not 100%). I recently started feeling even more run down, cold a lot, slow healing, joint aches, can't concentrate, easily angered, I'm just tired. I went last week to get my thyroid checked and mentioned all this to my Dr and brought up possibly adding T3 and reducing my T4 dosage. He told me the body converts it all as it needs it and it's probably placebo effect making people feel better who take T3!!! I refrained from punching him and just ignored it and figured I'd wait for my labs...my TSH came back 2.85 and he said it was fine and wanted to start me on zoloft for depression. I said forget it. Oh yeah, he doesn't even bother testing T3 or T4 or anything else thyroid related. He did test B12 which was actually slightly high.
I guess my point is it's irritating that a Dr. would just treat by a lab value...but even then they aren't even looking at the change. A 60% increase in a narrow therapeutic window is a lot. Granted their "normal" is an old standard of 0.4-4.5. 
I just wanted to complain and make sure I wasn't blowing this out of proportion and sounding crazy. I'm looking for a new Dr, but getting an apt takes over a month and a half which makes the situation that much more frustrating!! Anyway, thanks for listening!


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## desrtbloom (May 23, 2010)

Venting is good! 

I'm glad you are changing to a new doctor. Definitely with thyroid disease you need a physician that listens and wants to work with you, not just prescribe drugs in hope that it helps. I hope that you can find a physician that helps you. It's so frustrating dealing with everything as it is and then if you have to battle with your doctor it just adds more stress and stress isn't a friend to thyroid issues.

Best of luck and feel free to vent anytime. 

Best Regards,
Patti


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## northernlite (Oct 28, 2010)

Vent away, many of us hear you and have experienced exactly what you are saying. You are neither blowing it out of proportion nor are you crazy!

I can only give you my limited experience. Diagnosed 11/2010 with TSH 8.44, normal FT4, very symptomatic. After 6 weeks on 50 mcg, TSH 2.02, 80% of symptoms gone BUT 20% still there, I was still battling with some afternoon fatigue, some joint pain, some shortness of breath and a much too early bedtime requirement! My doctor was satisfied because I was in range on both TSH and FT4. I was not and got an increase to 62.5. TSH fell to 0.82 and most symptoms are completely gone.

So at 2.02 I was not good enough. You are not crazy when you feel that 2.85 you are not good enough.

I think you thought of adding T3 is exactly what I would be doing if I was up at a 250 mcg dose and still having symptoms. You certainly need a look at your FT4 and FT3 to evaluate that.


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## Workaholic (Mar 1, 2011)

I can totally relate as well. I was also diagnosed at the end of 2010 and my Dr told me to "watch and wait". Meanwhile, I have almost every symptom including the beginning stages of eye involvement, which i TOLD my Dr about and she just told me my labs look fine. Her plan of treatment was to WAIT UNTIL MY THYROID FAILS and then give me replacement hormones.

I'm also in the process of looking for a new Doc. Please keep us posted! You are NOT alone!


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## Workaholic (Mar 1, 2011)

oh.. and I'm currently not on ANY Meds. Have to wait 3 weeks for my first appt with an endo. and my neck is itching like crazy at night and when I wake up.


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## Andros (Aug 26, 2009)

jfoxwvu said:


> Hello, I'm a pharmacist who graduated from WVU in 2003 with my PharmD. I'm mainly here to complain haha! When I was a child I was treated with PTU for Graves disease and after 2 treatment periods of 1 year each (had 1 relapse in between) my thyroid finally normalized. I had it checked every year up until my high school/college years. In 2001 I had a physical and was put on synthroid 25mcg because my TSH was high. Over the years my dose was increased every so often and now I'm on levothyroxine 250mcg.
> To be honest I haven't really felt as good as I did when I was in college but up until now I just thought it was part of getting old. I had a TSH done in Nov 2010 and it was 1.7 (I felt better then but still not 100%). I recently started feeling even more run down, cold a lot, slow healing, joint aches, can't concentrate, easily angered, I'm just tired. I went last week to get my thyroid checked and mentioned all this to my Dr and brought up possibly adding T3 and reducing my T4 dosage. He told me the body converts it all as it needs it and it's probably placebo effect making people feel better who take T3!!! I refrained from punching him and just ignored it and figured I'd wait for my labs...my TSH came back 2.85 and he said it was fine and wanted to start me on zoloft for depression. I said forget it. Oh yeah, he doesn't even bother testing T3 or T4 or anything else thyroid related. He did test B12 which was actually slightly high.
> I guess my point is it's irritating that a Dr. would just treat by a lab value...but even then they aren't even looking at the change. A 60% increase in a narrow therapeutic window is a lot. Granted their "normal" is an old standard of 0.4-4.5.
> I just wanted to complain and make sure I wasn't blowing this out of proportion and sounding crazy. I'm looking for a new Dr, but getting an apt takes over a month and a half which makes the situation that much more frustrating!! Anyway, thanks for listening!


You are not blowing this out of proportion. When a patient is on that high of a dose of thyroxine, one would have to wonder about conversion problems.

Free T3 is your active hormone. You know this. You have the degree in pharmacology!!

Listen to your inner doctor and find another doctor stat!

You can get your own labs @ HealthCheckUSA

http://www.healthcheckusa.com/ provided they are in your area.

TSH, FREE T4 and FREE T3; of course!

Really, you should have antibodies' testing at this point in time. It's been a long time since you have been hyper and it would be prudent to find out why you are now hypo.

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

Do you have a goiter? Are you male or female?

You could make the appt. and get on a "cancellation" list.

My philosophy is "Less is better!" Hold off on any panaceas for now if you can. I "think" you intend to do that; it sounds like it!










Treating based on TSH alone is a sign of a very bad doctor. Humble opinion here!


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## lavender (Jul 13, 2010)

I can totally relate, so vent away! I had my thyroid removed and felt worse and worse on synthroid, even though my T4 was at the top of the range. I could only get my doc to raise my dose when my TSH was 7. And then they told me I had anxiety and depression when my TSH was 3.5 and I was feeling terrible. I finally got my T3 tested, and it was at the bottom of the range. Since my doctor would not ever recognize that it was important, I had to fire both my endo and family doctor and then wait two months to get into someone new. It was all worth it. I have been on Armour, which has both T3 and T4 in it. My doctor runs TSH Free T3 and FreeT4, and I have been feeling better and better. I know that if I had stayed on T4 only, I would have ended up totally disabled and taking anti-depressants to numb the pain. Not the way I want to live! Good luck with your new doctor!


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## Lovlkn (Dec 20, 2009)

jfoxwvu,

And on top of all of it now your official medical record has history of depression, why? Because the doctor recommended you go onto Zoloft.

Run and find a doctor who is willing to treat you properly.

Insist on testing your FT-4 and FT-3, once I began Cytomel my health improved greatly.

A 250mcg dose of T-4 is pretty big -how do you take it? Empty stomach with a full glass of water?


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## lavender (Jul 13, 2010)

I have wondered if it is possible to get a diagnosis (like depression) taken off one's chart if one finds that the medication is unhelpful or finds that treating a different disease improves the symptoms that were improperly diagnosed.

Not sure if it's worth challenging a doc, I just know depression is a difficult diagnosis to shake and can have long term repercussions when applying for insurance. (I was actually not able to get insurance on a car loan because of a former diagnosis of depression).

I do know that when I got into the new doc, I brought her copies of all my lab work, but decided not to have my file transferred from the old doc and purposefully did not tell her of my prior diagnosis of depression and anxiety because I wanted her to take my symptoms seriously.

Regardless, I was a mental basked case when my thyroid levels were off, and EVERYTHING has improved with Armour and it's T3 magic.


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## jfoxwvu (Mar 5, 2011)

I've made three different appointments with three different Dr's and told them to put me on their list to call if someone cancels. Whichever one I get in with first I'll just cancel the other 2...unless they don't listen either then I'll just go to the next. It's irritating having to wait 2 months to see a Dr isn't it!! 
And I have signed up for my own labs as well. I believe I went through a different site, but the test has T4, T3, free T4 and free T3, TSH, reverse T3, and T3 uptake I believe. I'll probably be weak from all the blood loss HA! 
When I was young and being treated for Grave's my Dr. said I'd become hypo one day, the thyroid just kind of burns itself out. And I did have an ANA test not too long ago and I didn't test positive for lupus but was positive for Anti-centromere antibodies. Luckily, I have no symptoms of CREST or anything related to that and hopefully it stays that way!
And I take my levothyroxine in the AM as soon as I get up. If I forget I just try to fit in in the day an hour after I eat. I try to eat 6 small meals a day so having an empty stomach is tough.
And one of the reasons my Dr didn't want to try T-3 was because it would mess up my labs. Well, that's the whole point!! Haha.
I think the book "The thyroid solution" should be mandatory reading before a Dr can prescribe thyroid medicine.


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## McKenna (Jun 23, 2010)

> I think the book "The thyroid solution" should be mandatory reading before a Dr can prescribe thyroid medicine.


 By Rhida Arem?? That's my favorite thyroid book. Yes, it should be a mandatory read for docs.

Does the lab site offer antibody testing? I think those would help paint a clearer picture.


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## Andros (Aug 26, 2009)

jfoxwvu said:


> I've made three different appointments with three different Dr's and told them to put me on their list to call if someone cancels. Whichever one I get in with first I'll just cancel the other 2...unless they don't listen either then I'll just go to the next. It's irritating having to wait 2 months to see a Dr isn't it!!
> And I have signed up for my own labs as well. I believe I went through a different site, but the test has T4, T3, free T4 and free T3, TSH, reverse T3, and T3 uptake I believe. I'll probably be weak from all the blood loss HA!
> When I was young and being treated for Grave's my Dr. said I'd become hypo one day, the thyroid just kind of burns itself out. And I did have an ANA test not too long ago and I didn't test positive for lupus but was positive for Anti-centromere antibodies. Luckily, I have no symptoms of CREST or anything related to that and hopefully it stays that way!
> And I take my levothyroxine in the AM as soon as I get up. If I forget I just try to fit in in the day an hour after I eat. I try to eat 6 small meals a day so having an empty stomach is tough.
> ...


You are right; "That is the whole point!" I just had a doctor tell me that I could not walk everyday if I wasn't on Armour! (He was aghast that I was on Armour) Duh??? Geez; doc! You are right! I kept my mouth shut and the heck out of there and fast.

I had told him I feel good and was walking every day. He wanted to put me on Synthroid. Like I have never tried it. Yeah; right!


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## jfoxwvu (Mar 5, 2011)

Well, I had blood work done and my TSH was actually a little high this time. My new Dr. listened to what I had to say and agreed to give the T3/T4 combo a shot. My free T3 was on the low side of normal...reference range on is 2-4.4 ng/dl and I was 2.4, (total T3 was low but free is a better indicator). So I'll start it tomorrow and see how that goes. Thanks everyone for the support and I'll be sure to let you know if it helps or my dosage needs adjusted!


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## Andros (Aug 26, 2009)

jfoxwvu said:


> Well, I had blood work done and my TSH was actually a little high this time. My new Dr. listened to what I had to say and agreed to give the T3/T4 combo a shot. My free T3 was on the low side of normal...reference range on is 2-4.4 ng/dl and I was 2.4, (total T3 was low but free is a better indicator). So I'll start it tomorrow and see how that goes. Thanks everyone for the support and I'll be sure to let you know if it helps or my dosage needs adjusted!


There you go; you do need T3. What did the doc Rx and how much? I am soooooooooooooooooo happy for this for you. You are going feel so much better!


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## jfoxwvu (Mar 5, 2011)

Thanks Andros! The Dr. started me on 25mcg of T3 and 125mcg of T4...The Dr actually asked me what I wanted to do. Since I had a bunch of 125mcg tablets I decided that was good. The equivalent total dose is actually slightly less than what I was on (250mcg of T4 only). This combo would theoretically be equivalent to 225mcg daily of T4 alone. I figured start here and increase in case I'm more sensitive to T3 because T4 doesn't seem to do anything! I'm just going to go by how I feel instead of a stupid lab test (well, as long as my TSH isn't zero).


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## Andros (Aug 26, 2009)

jfoxwvu said:


> Thanks Andros! The Dr. started me on 25mcg of T3 and 125mcg of T4...The Dr actually asked me what I wanted to do. Since I had a bunch of 125mcg tablets I decided that was good. The equivalent total dose is actually slightly less than what I was on (250mcg of T4 only). This combo would theoretically be equivalent to 225mcg daily of T4 alone. I figured start here and increase in case I'm more sensitive to T3 because T4 doesn't seem to do anything! I'm just going to go by how I feel instead of a stupid lab test (well, as long as my TSH isn't zero).


That is a rather high dose. Is this Cytomel? Most of us start on 5 mcg..

For some reason everyone seems to think that T4 and T3 can be configured to be equivalent. I don't quite see that. Triiodothyroinine is in no way is the same chemical agent as Thyroxine.

Just one woman's very humble opinion.

This would be a very good topic for "pleasant" conversation. Let's toss the ball around on this one!

Anyway; be careful with this. Let us all know how you do!


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## jfoxwvu (Mar 5, 2011)

Yeah, it probably is pretty high. I was actually worried about that but my levothyroxine dose was pretty high already so we'll see. It is cytomel and I'm cutting a 25mcg in half to start out and see if I get hyper symptoms. If so I'll adjust slowly. 
In the pharmacy world T3 is considered 4 times as potent. So 25mcg cytomel = 100mg synthroid. But that's probably more of a ballpark.


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## Andros (Aug 26, 2009)

jfoxwvu said:


> Yeah, it probably is pretty high. I was actually worried about that but my levothyroxine dose was pretty high already so we'll see. It is cytomel and I'm cutting a 25mcg in half to start out and see if I get hyper symptoms. If so I'll adjust slowly.
> In the pharmacy world T3 is considered 4 times as potent. So 25mcg cytomel = 100mg synthroid. But that's probably more of a ballpark.


Well; that relieves my mind. 12.5 mcg. is better.

The thing is, Triiodothyronine is the "active" hormone. Very very potent!

When are you taking your first dose? I hope you let us track this with you and I wonder if you are going to keep a diary on this? Might be fun and interesting to do!


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