# First endo appointment - Part Un



## LMSchune (May 30, 2013)

I'm getting closer to finally seeing an endo for my 2+ year battle with my suspected thyroid issue, and when I finally do see her I'll be sure to post back here to get input.

Per this doctor she likes new patients to get fresh labwork done 1 week prior to their appointment. I went in today for my bloodwork and U/S, found out U/S will be on the day of my appointment. Fine, no biggie. When the tech was drawing my blood I asked specifically what tests would be done. I was told TSH (boo) and FT4 - one point for doctor. Asked what about antibodies, since that is what I am here for. Nope, not on the list - no point for doctor.

At my insistence the tech tried to find the nurse but both the nurse and doctor were with a patient, so she made a note on the order form and took a 3rd vial of blood. She said the doctor may choose to have the antibodies tested or may not, I'll have to wait and see next week. I'm debating whether I want to pay the $50 and have my TPOAb tested privately and bring that with me.

I still want all these tests done to rule out anything else:
Thyroid Stimulating Hormone Receptor Antibody (TRAb) - Graves
Thyrotropin-binding Inhibitory Immunoglobulin (TBII) - Graves
Thyroid Stimulating Immunoglobulin (TSI) - Graves
Antinuclear Antibodies (ANA)
B12
Ferritin
Iron
Vitamin D

So I hope doctor is in a listening mood. If there is one thing I can guarantee, it's that I am not walking out of that office without a prescription for thyroid replacement and all my questions will be answered to MY satisfaction. I'm done playing games and being ignored by the medical specialists.

I've been having a weird past few weeks - still mainly constipated with low energy/fatigue, hair loss seems to be ramping up, feel like I'm starting to get joint pains, stinging pain sometimes on the right side of my throat just below my ear, I can't talk for long periods of time or my voice goes completely, very odd stinging/bug bite sensations on my skin from the knees down, nagging headaches, and I swear my feet are slightly swollen/fluid filled in the AM.

Oddly enough, I had stomach cramping and FOUR BMs on Thursday, and what looked like bloody stools yesterday. I seriously hate my life right now.

ETA: Previous thread/history
http://thyroidboards.com/showthread.php?t=8540


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## joplin1975 (Jul 21, 2011)

Make sure you get TPO run as well.

(And, not to nitpick, but you might want to keep all your posts confined to one threads -- there are so many members here that this makes it easier for folks to follow along!)


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## bigfoot (May 13, 2011)

Good luck with the appointment! That's a good sign that this doc is ordering labs *before* meeting you. And your mindset sounds like you are prepared, too. I will say that the bloody stools give me pause for concern. Absolutely, positively bring that up. Doesn't really sound like a thyroid issue, but the doc should hear about it anyways.


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## LMSchune (May 30, 2013)

Well, I am diagnosed Hashimoto's Thyroiditis. And the doctor will NOT treat me.

This was the worst experience I've ever had. The review that I read, too late, was dead on. She was aggressive, militant, talked down to me, and I was in tears after I left the office.

According to her, any doctor who would treat me with my labs are quacks. When I disagreed that my labs are normal and tried to talk to her about optimal levels, she went on the attack and asked me if I trusted medicine, why did I get the tests done in the first place. I couldn't even broach the topic about my labs being borderline low, which they are and she is adament that they are not.

Also basically called me a liar about my fatigue claims, saying no one with fatigue would be as active as I am with my exercise. She also was very accusatory as to why I have not seen a neurologist, rheumatologist, etc. for my symptoms. I didn't even bother to tell her that 1. I couldn't because no GP would take me seriously, 2. I couldn't get a referral.

So after I was thoroughly insulted and degraded, she wants to do the FNA on my nodule. I asked how long it would take because I had meetings at 10am, and her response - "We could already have done the FNA in the time I've sat here arguing with you about this."

Long story short, did the FNA without ice or localized anesthetic, was left standing in the procedure room with no further explanations, fumbled my way out of the office and into the bathroom for a cry. And to make things worse, I tried to discreetly make my way to my office when two execs I directly report to see me. They were super nice about it, but it was so embarassing.

I'm left here until the FNA results come back. After that, I don't know what to do.

My labwork from her office:
*8/13/2013*
TSH 0.502 (0.350-5.50)
FT4 1.02 (0.60-1.76)

Previous labs:
4/24/2007
FT3 2.9 (2.5-3.9 pg/mL)
FT4 0.82 (0.61-1.12 ng/dL)
TSH 1.75 (0.49-4.67 uIU/mL)

12/14/2011
TSH 1.895 (0.550-4.780 uIU/mL)
Insulin resistance <2.0 (L) (2-32 uU/mL)

6/15/2012
TSH 1.690 (0.450-4.50 uIU/ml)
FT4 8.5 (4.5-120 ug/dL)
T3 Uptake 29 (24-39%)
FT4 Index 2.5 (1.2-4.9)

5/29/2013
TSH 1.5 (0.450-4.50 uIU/ml)
FT3 2.3 (2.0-4.4 pg/mL)
FT4 1.15 (0.82-1.77 ng/dL)

Why why why WHY WHY did I not get thyroid testing done in those 3 years when I lost weight, felt amazing, and loved life? I bet that would show what my optimal thyroid levels should be.


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## LMSchune (May 30, 2013)

Question for members - endo also said that if she was going to do anything, it would be to prescribe me selenium supplements for the Hashimoto's, as it may help to reduce the TPO antibodies.

And, almost forgot, the inevitable "Are you depressed" came up. That I firmly took a stand on and told her that I am not depressed and I will not take medication for depression. Depression is not my disease.


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## bigfoot (May 13, 2011)

Argh, so sorry to hear this! Just keep your head held high and keep on truckin'. The answers are absolutely out there. Many (heck, nearly all) of us have had these same sort of experiences, and while it is a major let-down, it also tends to strengthen your resolve and makes you even more focused on what needs to be done. The problem with fatigue is that it can be from darn near anything. Still, more than likely you have other signs and symptoms that should give some major clues. Maybe it's largely thyroid-related, and maybe it's not, but something is obviously amiss.

Your doctor should have treated you with respect, first and foremost -- no matter if you are right or wrong. How on earth did she diagnose you as having Hashimoto's without at least running thyroid antibody tests (Thyroglobulin and TPO)? She did the FNA, but unless she is a mind reader, how did she know what the results would be while you were sitting in the office? Or was the Hashi's diagnosis merely a way to get you out the door? And she has the hutzpah to call other doctors quacks? Wow.

Next step(s)? If it was me (and it's not), I would be seeking out a more out-of-the-box doctor ASAP, whether it be an MD, DO, anti-aging, or naturopath. Someone who will turn over a lot of stones and work with you to get you healthy, not lambaste you every time you show up for an appointment. One idea that works for some people is to call local pharmacies (and/or compounding pharmacies) and ask which doctors prescribe things like Armour, Nature-Throid, compounded T4 & T3 meds, etc. Another approach is to go right to the drug makers' websites (Forest Pharm. and RLC Labs), and contact local docs who are listed.

Folks can safely take up to 200 mg / day of selenium, and the current school of thought is yes, it helps reduce antibodies and aid conversion of T4->T3. Go with a quality brand if you can swing it; as with any supplements, you tend to get what you pay for. Also, try to keep your consumption of soy to a minimum, as it is a goitrogen, like broccoli, cauliflower, cabbage, etc. (Although cooked _should_ be okay.) If you want to jump on the gluten-free bandwagon, that might get you some results if you have Celiac disease or a bad gluten sensitivity (although keep eating gluten until you are tested, that is, if you want to be tested).

:hugs:


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## LMSchune (May 30, 2013)

bigfoot said:


> Your doctor should have treated you with respect, first and foremost -- no matter if you are right or wrong. How on earth did she diagnose you as having Hashimoto's without at least running thyroid antibody tests (Thyroglobulin and TPO)? She did the FNA, but unless she is a mind reader, how did she know what the results would be while you were sitting in the office? Or was the Hashi's diagnosis merely a way to get you out the door? And she has the hutzpah to call other doctors quacks? Wow.


I had the TPO antibodies done which came back very high positive, so I guess that is her criteria for dxing me Hashimoto's, which is fine. Funny though, I asked her about the presence of Hurthle cells in the FNA results and she "doesn't care about Hurthle cells, I'm only looking for cancer." Um, okay, guess she doesn't care about Hurthle cell carcinoma, etc.



bigfoot said:


> Next step(s)? If it was me (and it's not), I would be seeking out a more out-of-the-box doctor ASAP, whether it be an MD, DO, anti-aging, or naturopath. Someone who will turn over a lot of stones and work with you to get you healthy, not lambaste you every time you show up for an appointment. One idea that works for some people is to call local pharmacies (and/or compounding pharmacies) and ask which doctors prescribe things like Armour, Nature-Throid, compounded T4 & T3 meds, etc. Another approach is to go right to the drug makers' websites (Forest Pharm. and RLC Labs), and contact local docs who are listed.


I've looked into this, and there are no alternative doctors/professionals I'd really be comfortable seeing in my area. After the results of the FNA (which I'm not confident about), I may look into the Charlotte area. Or check out an endo I hear good things about in a competing health system. Will check into the pharmacy route.

I WISH I could go back to the DO who initially started me down this road, because she was fabulous. However I found out in a work meeting, unrelated, that she had left the health system and went to a neighboring system on a 1 year contract. Didn't get anything in the mail from her about it or where she's suggesting her patients go, etc. Otherwise, I'd ask her to treat me.



bigfoot said:


> Also, try to keep your consumption of soy to a minimum, as it is a goitrogen, like broccoli, cauliflower, cabbage, etc. (Although cooked _should_ be okay.) If you want to jump on the gluten-free bandwagon, that might get you some results if you have Celiac disease or a bad gluten sensitivity (although keep eating gluten until you are tested, that is, if you want to be tested).


I tried GF for a month at the beginning of my weight gain to see if I was gluten sensitive, but I didn't notice any change. I don't have any symptoms of gluten intolerance or Celiac disease, but if I can find independent testing that is affordable enough I may just do it to check it off my list.

Thanks :sad0047:


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## Velcro (Jul 26, 2013)

Arrrrggg. No one should have to put up with the disrespect you did. I'm sorry you were treated that way. I would run...not walk...as far away from her as possible! I know you are limited in your choices, but she's ridiculous and shouldn't be practicing period with that kind of attitude.


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## jenny v (May 6, 2012)

Fire that doctor immediately! No one should treat you like that, esp. not your doctor. That's just rude and disrespectful.

I just don't get why some doctors think they can just treat a patient like crap and talk down to them as if they were lower on the scale of humanity in some way. I know that they get their fair share of people making up symptoms in order to get drugs, but I think about 95% of us are there because we truly don't feel good and we're just trying to figure out why.


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## sjmjuly (Mar 23, 2012)

A common tale I am afraid,,,
I just waited 3 months to get an appt with one of the top endo's in my state only to sit and wait for 40 minutes to see the doctor and first had to tell my tale to an "endo student". When the doctor FINALLY showed up, he spent all of 10 minutes with me and I WAS THE ONE THAT TOLD HIM WHAT TO PRESCRIBE!!!!! AND HE DID!!! I told him that I can't take Synthroid but I heard of Triosint (sp?) and he said "ok try that". How messed up is that? I told him I was on Naturethroid (he hates it and won't prescribe it) won't run any test but TSH and Free T4. I go to a naturopath who I love and ONLY went to see this guy at my mother's request. BIG, FAT JOKE. Never again.
Find yourself a good naturopath. They seem to get it.


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## bigfoot (May 13, 2011)

On the plus side, with the Hashi's diagnosis, you at least have that feather in your cap to vouch for treatment.

hugs6


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## LMSchune (May 30, 2013)

Thanks all. I am trying to decide what I want to do re: my experience with the bad endo (BE). Given my position in the health system, I probably do have a good chance to get this complaint heard if I choose to complain internally. Or I could go through the SC medical board complaint process.

The endo that has very good patient reviews requires a physician referral which I would want to get from the general surgeon. I worry though that he will see me on the form and want to know why I am looking for a different endo, thus relaying all of it back to the BE _before _I get the FNA results. And I don't know how soon I could get in to be seen.

Another option would be to go back to the practice that my DO left, as there is a male DO there who I could see. I called and asked if he or his remaining partner ever treat thyroid patients or defer to an endocrinologist, and the nurse said they treat each case by the individual. So there's an option.

Oh vey. But thanks for the support everybody :sad0049:


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## hashimotocoaster (Mar 22, 2013)

So sorry about that. I recently had a similar experience--waited to see an endo for months only to have him glance at my TSH and tell me it's fine (not really), tell me I'm on the right medication (debatable), smile patronizingly, get aggressive when I questioned him, and walk out the door. I also left the place shell-shocked and in tears. Apparently this happens a lot.

It sounds to me, based on the brief description of your symptoms and the fact that you were diagnosed with Hashimoto's, that you may be rapid-cycling between hyper and hypo, which is probably skewing the hell out of your labs. Ain't it fun?

Good luck. Hope you find a better doctor.


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## bigfoot (May 13, 2011)

Like you said, you might wish to tread lightly if you are doctor-shopping at the moment. No point burning any bridges right now. The idea of going back to the previous DO's office sounds like a good one. At the least, he will likely listen to you and be open to referrals. You might even ask for a quick meet 'n' greet in person or on the phone. I did that once, and the doctor and I were both able to be honest with each other, which resulted in me looking elsewhere.

Frankly, I would try to schedule an appointment with that "good endo" anyway. And get on the cancellation list. It never hurts to have more irons in the fire. And I wouldn't allude to having seen anyone else right off the bat. Just get a copy of your labs and pertinent tests from the "bad endo" office and bring them with you to the new person. If the question comes up, I would plainly state that you wanted a second opinion, and didn't like how you were treated.

As far as the complaint, I'm torn on that. On one hand, you don't want someone else to fall into their clutches. On the other hand, you are in the middle of all of this. It's a tough call to make. I've been there, and I do somewhat regret not [edit] making a formal complaint, instead just making a personal stink about it.


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## LMSchune (May 30, 2013)

bigfoot said:


> Like you said, you might wish to tread lightly if you are doctor-shopping at the moment. No point burning any bridges right now. The idea of going back to the previous DO's office sounds like a good one. At the least, he will likely listen to you and be open to referrals. You might even ask for a quick meet 'n' greet in person or on the phone. I did that once, and the doctor and I were both able to be honest with each other, which resulted in me looking elsewhere.
> 
> Frankly, I would try to schedule an appointment with that "good endo" anyway. And get on the cancellation list. It never hurts to have more irons in the fire. And I wouldn't allude to having seen anyone else right off the bat. Just get a copy of your labs and pertinent tests from the "bad endo" office and bring them with you to the new person. If the question comes up, I would plainly state that you wanted a second opinion, and didn't like how you were treated.
> 
> As far as the complaint, I'm torn on that. On one hand, you don't want someone else to fall into their clutches. On the other hand, you are in the middle of all of this. It's a tough call to make. I've been there, and I do somewhat regret making a formal complaint, instead of just a personal stink about it.


Yep, yep. Totally agree.

I will check back with an update in a few days re: situation and FNA.

Thank you everyone. Now I'm going to try to focus on my work and keep my mind occupied. Got a new kitten over the weekend so dealing with that little demon should help


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## bigfoot (May 13, 2011)

Oh boy... that will keep you busy!

On a halfway-related side note, I don't know if you've seen "The Oatmeal" comics, but he also has a funny book titled "How to Tell if Your Cat is Plotting to Kill You". (Sorry, we can't relate, as we have a dog, LOL.)


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## LMSchune (May 30, 2013)

Update -

Nodule came back benign. From report:

*Interpretation
Thyroid, right, fine needle aspiration biopsy:
Satisfactory for evaluation
Benign
Polymorphous lymphocytes and scatted Hurthle cells, consistent with lymphocytic (Hashimotot's) thyroiditis (see comment)

Comment:
Risk of malignancy for lesions in this category 0-3%*

Now I'm wondering if I am cycling in hyper, given my latest 0.5 TSH test.


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## bigfoot (May 13, 2011)

Excellent!!

I will leave your question for the folks here knowledgable about biopsies and such.


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## Andros (Aug 26, 2009)

LMSchune said:


> Update -
> 
> Nodule came back benign. From report:
> 
> ...


This is wonderful about the clean slate and now you "do" have definitive diagnosis for Hashimoto's.

And yes; it is a topsy turvy ride. So difficult to monitor thyroxine med dosages.

Did you have FREE T3 test perchance?


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## LMSchune (May 30, 2013)

Andros said:


> This is wonderful about the clean slate and now you "do" have definitive diagnosis for Hashimoto's.
> 
> And yes; it is a topsy turvy ride. So difficult to monitor thyroxine med dosages.
> 
> *Did you have FREE T3 test perchance?*


Hah, I wish!

This endo was singing TSH's sweet praises to me. I'm lucky she checked the FT4 at all.


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## LMSchune (May 30, 2013)

:confused0031:I went ahead and called the general surgeon's office, and left a VM for the woman who normally handles referrals. That was Friday at 11am, and have not heard anything back yet.

Also went ahead and made an appointment a week from this Friday for the remaining DO at the GP office. I wanted to give myself plenty of time to get my FT4 and FT3 done again before I present my 'case.'

And I say 'case' in all seriousness; I feel like I'm a lawyer or a lobbyist who has to prep, research, practice, and beg just to get my particular argument heard; in this case, my argument for wanting to try meds.

What I have been doing, in case anyone wants to see, is using an excel spreadsheet to help track my lab results, % of range, targeted % range, etc. Maybe it will help a doctor visually see and 'get' what I'm trying to say. And not berate me, which would be a bonus.

:confused0031:


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## LMSchune (May 30, 2013)

Update:

I saw the DO, and he was wonderful. Listened to what I had to say, didn't push me about the awful endo experience, and agreed that while consistant, my thyroid levels looked low. It was so nice to finally hear an educated doctor that thinks each individual can have their own 'best' thyroid levels.

He wants to start me on 12.5 mcg Levothyroxine once a day, and then check labs in 3 months (I will likely check my own levels in 6 weeks). The tablets are actually 25 mcg so if I feel like I want to try that dosage, I can.

I'm very curious as to whether I will be able to find out if I am converting T4 to T3 properly. I am also going to make a decision on whether I want to try GF again along with meds, and also taking a break from alcohol. I am only a light drinker (glass of wine with dinner maybe 3 times a week) but I want to cut out anything that could possibly interfere with my absorption. Shouldn't be too had, as I haven't had a drink in a week.

Next step in the journey is about to be taken


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## jenny v (May 6, 2012)

That is excellent news! Sounds like you've found a doctor who is a keeper.


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## bigfoot (May 13, 2011)

Great news!! Sounds like you hit pay dirt with this DO. Honestly, I don't think a glass of wine here or there is a big deal (besides, resveratrol is a bonus). However, pounding back a six-pack every night while watching T.V. wouldn't be a good idea. Not to mention that beer is not gluten-free-friendly (although they do have a couple GF beers out now).

Your idea to check labs in about six weeks and re-evaluate at that point is a good idea. One way you can check for T4->T3 conversion is to run a Reverse T3 test. If it's high, it means your body is instead creating the inactive form of T3 from the T4, with no benefit to you. If it comes to something like that, one way to deal with it is by taking T3 meds, and another angle is addressing whatever inflammation or imbalance is causing the high Reverse T3. But I wouldn't worry too much about crossing that bridge right now. See where taking the levothyroxine gets you.


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