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Discussion Starter · #1 ·
I had my first appointment with my new (and 5th) Endocrinologist. So far I'm very happy with her. I believe some folks who are more alternative medicine focused may not fully like her, but I think she will be fine.

Pluses:

1) Willing to test FT4 FT3 (but sounded like she doesn't usually test FT3 but is willing to)

2) Has a pretty good bedside manner, though I could tell she was a bit iffy with me knowing I've dabbled in alternative ideas/treatments

3) Asked if I was eating brazil nuts, so knows Selenium is important

4) Has some clients that take T3 with their T4 medication (but was opposed to treatment with NDT meds). So this gives me the option to try T3. She cautioned that with my anxiety (which was obvious at the visit as doctors make me nervous...my BP was high, but I said that's because I'm here).

5) Generally seemed quite knowledgeable (better than previous Endos) on hashimoto's and Hypothyroidism. Knows they are two different things. Talked to a lot of points I agreed with.

Minuses (or neutral depending on opinion):

1) Follows the American Thyroid Association guidelines (I'm guessing there are not many Endos that don't). But she was pretty clear she goes by science based treatment. I appreciate that she is letting me know that upfront though.

2) Is against NDT meds, though I am personally not interested in these based on research. I think for me it would probably be too hard to dial those in and would rather add some T3.

3) Doesn't want to test antibodies since they are high...this is normal for endos, and antibodies are a controversial subject

4) Doesn't want to test for RT3. Said she doesn't feel it's a good test. Also normal for endos..and controversy on RT3. However, I do think RT3 does come into play for some people.

5) Could tell I was a bit into alternative medicine such as, change in diet, I had a few extensive tests which I'm sure she knew was not from a normal doctor, etc. She did make a point that she didn't agree with alternative medicine and was not going to go there. But I'm OK with that personally. First, it's not in her training. Second, some of it can be pretty debatable.

We are upping my medicine slightly to 100 3 days a week and 94 4 days. I have been feeling a bit better. But my numbers are still a bit low on the FT3 and seem to go down when I add more medicine. Endo's believe this is the body compensating..but I think it may be I just have something sub optimal. Does everyone feel good with FT3 in the higher range? Or does it depend on the person?

So I'm going to the functional medicine doctor Monday and I'm going to have her do tests I don't think my doctors will. I'd like to see a few things. Zinc, Copper, Iodine, selenium (not likely to supplement per se, just want to see), mercury and other heavy metals, etc. I have 14 fillings that have mercury in them, so that's a potential.

I'd like to rule everything out for my lowish T3. But adding T3 is at least an option now.

What do you all think? Do you ever go to Endocrinologists? I know they can be unpopular.
 

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Doesn't want to test for RT3. Said she doesn't feel it's a good test. Also normal for endos..and controversy on RT3. However, I do think RT3 does come into play for some people.
Do you live in a state where you can test on your own? Might be worth it -

So I'm going to the functional medicine doctor Monday
Why are you bothering with a Endo if you are also going to a Functional Medicine doc??

What do you all think? Do you ever go to Endocrinologists?
Saw 2 post TT and gave up - they are only concerned about TSH. I'd be dead if I kept seeing Endo's. Taking T3 hormone makes a huge difference if you are low.

Did you ask your endo for some T3 hormone? Do you plan to ask the functional doc? I said in an earlier post I fely you would benefit more from adding T3 hormone. Your FT-4 is already in decent range. Going above range will cause you to build up RT3
 

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Discussion Starter · #3 ·
my functional doc is not allowed to treat stuff...my state has rules on it. She's really more of a give supplements kind of doc, most of which I don't want. But she is willing to test anything and it seems like my insurance covers it mostly.

We are going to wait on the T3, but I'm guessing I'll be heading that way at some point. She expressed a little concern with my anxiety and taking T3. Probably because I was pretty nervous during the visit. I just get anxiety going to doctors.

We are just upping my Synthroid a very small amount and retesting. But yeah, I don't seem to be able to get my FT3 to raise. I still want to do some testing of things that are related to conversion. But if everything checks out, a small amount of T3 could be worth trying. She said she'd lower my synthroid a little.

How hard was it for you to dial in the combination? Of course not having a thyroid at all could make for a different situation.
 

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Discussion Starter · #4 ·
I may still look for a good functional doctor in a different state, but quite frankly I'm a bit wary of them and the costs are a bit high for many of them.

I've found some good ones online that do distance consulting, but again, the costs are a bit high. And many of them want you to do their protocol and won't be happy if you don't want to. Since I'm doing pretty good right now, I don't want to mess with things too much.

So getting some testing done will allow me to figure things out a bit on my own.

I will say she seemed fairly knowledgeable on this. I liked her more than the other 4 I tried out before her.
 

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Discussion Starter · #5 ·
On the T3 being low, she mentioned you body is trying to regulate it. I have heard this concept from other doctors including some functional doctors. But I know on patient run groups and this group, they tend to say you want your FT3 in the upper range. It's interesting and somewhat frustrating. So much conflicting information when it comes to this disease.

She said she doesn't usually run FT3 but was willing to run it since I asked. My guess is she mostly just runs it for the people she is prescribing T3 to. I think endocrinologists assume the conversion is going to take place. Previous endos either said "why would we test for T3" or your body will convert it unless you have a genetic problem. And I think by that she meant it would be below range since no one tested me to see if I have an issue with that.

So I think some testing will be interesting. And again, the functional doctor will run a full thyroid panel with RT3 which helps. I've only had that one RT3 test and it would be interesting to see where that is now.
 

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Discussion Starter · #6 ·
Not sure if I mentioned this, but when I eat oysters, crab, mussels I feel like I get a boost. Could just be a coincidence, but those have high levels of zinc and iodine. I wondered if that was a sign. Doesn't mean I would want to supplement iodine since I know it's a tricky thing.

I will say, when I added a multivitamin and focused on nutrition I really started to feel better. The multi has a small amount of iodine and zinc in it. Who knows.
 

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Selenium is suppose to help raise FT-3. I gave it a short trial prior to my Cytomel prescription. Taking 200mg selenium did raise my FT- 3 slightly but once I got the prescription for T3 hormone I quit selenium and took the hormone.
 

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I also want to mention - if your FT-4 gets
Closer to high range your anxiety will likely increase. I used to have anxiety prior to adding T3 but it resolves once my FT-4 and FT- 3 got into the 1/2-3/4 ranges.
 

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Discussion Starter · #9 ·
Without a doubt Lovlkn. If you look at my March and April 2018 timeframe in my signature, I had almost uncontrollable anxiety and lots of hyper symptoms.

Right now, anxiety isn't too bad, but I do have some bouts of jittery twitches. But I am feeling about as good as I have in a long time. And I have more energy. But I could foresee that going too far. So it will be interesting to see my next test results. Then I can discuss with the Endo whether I should try T3...unless my test results from my functional doctor shows something.
 

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You need to find a functional doctor who is a MD or DO - that way they can prescribe in your state.
 

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Discussion Starter · #11 ·
I don't believe my state has it. But I am very closet to Pennsylvania and Maryland, which may have it.
 

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I'm from PA, Philly area.

I'm treated By my PCP who is an MD.

I first was refered to the so called best Endo in the area.

He could have cared less about how I personally felt physically or mentally and focused on Lab work mostly TSH.

I was given synthetic t4 at first which made every physical and mental sign & symptom 10 x worse.

I was literally yelled at for asking about NDT and was told my ranges were within normal and I was cured.

Number one there is no cure for thyroid disease just treatment.

Any first year medical student knows this......

So I flipped out on this guy and fired him and found a new PCP who cares more about how I feel than all the blood tests & studies.

He let me try NDT which I've been taking for 5 years.

Most all symptoms are gone or at a minimum...

Everyone's different and everyone's ranges are different..

Or everyone's the same and I'm different......

All I know is I do better with treatment by the way I feel instead of just Labs.......
 

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Discussion Starter · #13 ·
Creepingdeath,

That's the one thing I didn't like about this new Endo. She said she was not into NDT and called it an old medicine that they used to use. I can't blame her too much as that's normally how Endos are trained. I also know people sometimes have a hard time dialing NDT in, so I can understand why Endos and PCPs may be hesitant to use it. However, the fact that she is open to using T3 is a huge plus. My PCP (who I do really like in general) wasn't comfortable with any T3, but she also isn't managing my Hypo.

I guess one plus is you know up front her approach. Since I was looking for a second opinion (actually 5th), she just let me know how she treats hashimotos and hypothyroidism. Actually, I kind of liked that she phrased it that way.

For me though, it's OK because I'm not interested in NDT at this point and would rather try taking some T3 with my T4.
 

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This Endo had me on T3 only for 4 months.

My TSH was never higher "179" and I felt no better. Actually I felt nothing.

The synthetic t4 did shrink my thyroid or "goiter" but did nothing for symptoms or just made them worse.

The t3 did nothing for the goiter or symptoms.

I came to the doctor because of the horrible painful symptoms. The goiter didn't really bother me.

Hope things turn out the way you want them to no matter the treatment.

But you'll never be the same no matter how close you get to the way you used to feel.

You're for now attached to a pill for the rest of your life.
 

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Discussion Starter · #15 ·
Very true...She was indicating the same thoughts on not being the same.

I do think some people get it worse than others. Both my parents have it, but never really did anything different in their lives. That being said, my dad now has type two diabetes and dementia. Although the dementia could be because he has been on Xanax for 20 years. Of course he was on Xanax because of anxiety caused by this. My mother seems to have done a bit better. Though she has a strait up allergy to dairy now. Both of them have been on the same dose of Levo for many years. So I guess further thyroid damage has not occurred.

My one sister has never been able to dial in the meds. Anxiety, depression, etc. I've got her into looking at further efforts and she now knows she has Hashimoto's.

My other sister seems to be doing better than most of us. She's been on the meds since she was 20ish. I know she has some anxiety though. She started on something like 75 and is now on 137...and her latest TSH (tested once a year) was 2.6...so she maybe going higher soon. She's obviously had further damage over the years. I'm not going to try and get her to look into alternative stuff since she's doing well and I don't want to mess with that. If she's interested I can talk to her more about it. But I'm starting to think ignorance is bliss. Though I'm hoping to slow down or stop further damage.

A cousin of mine is on NDT. She went through some issues with it. She was on WP, they had a shortage. Went on Nature Throid and did horrible (got hyper), then now is on NP thyroid and doing well. She goes to a nature path and is doing some alternative things like I am eating wise.

My problem is I didn't know they all had this. I knew my sister that is on the highest dose had a thyroid issue when she was trying to get pregnant. But never thought about anything else. It would have helped if I would have known everyone had this so I could have been tested many years ago before it got so bad. I believe I've had this going 18+ years. But with all the stress I had in a short timeframe and some trauma, it really ramped up and kicked my butt.

I think I'll get it dialed in enough to settle things down and be able to function good enough. And hopefully be able to not have too bad of health going forward.

My Dad is 77 and not really in great health. So if I try to do things better I hope to avoid that type of stuff.
 

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With a TPO that high I think it might be difficult to stabilize. Your autoimmunity is going crazy.

When is the last time you had an ultrasound?

Have you ever had Thyroglobulin run?
 

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Discussion Starter · #17 ·
That TPO was the original one when I was first diagnosed. The last reading was 181. I will be getting a full thyroid panel soon so it will be interesting to see where my TPO is now. So in 4-5 months it came down pretty significatly (Feb 2018 to July 2018). Hopefully the next test it's not too high...but I know it can go up and down fairly randomly.

Thyroglobulin has been negative both times it's been tested.
 

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Discussion Starter · #18 ·
I feel like I owe my new Endocrinologist a bit of an apology and also gratitude for sticking with treating me. I should have toned down the fact that I dabbled in alternative medicine and such. Still, I felt I was respectful during the visit...just very anxious because doctors make me on edge.

We'll see how things go with her. But I believe it's a lesson that we need to understand where they are coming from and how they treat this issue. If we want alternative medicine, we shouldn't be coming to them. I now understand why she was pretty upfront about her approach and being anti-alternative...and why she was very cautious with me since I had some full thyroid panels and was part of a patient run online group. I probably made her cringe quite a bit.

Still, I believe it was a good move for me to try a new endo...My last one was OK with my TSH being near 5 and didn't want to change anything.
 

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Doctors hate Dr Google - LOL

Need to not mention anything internet related as far as research.

Don;t expect them to figure out what you need to help you feel your best - it's up to YOU to do that - then simply "use" the doctor to get the medications YOU need.

I gave up a long time ago trying to find a doctor to "treat me" because of all those that would not or could not.

The reason I am on the proper amount of medication today and since 2009 is because I worked the medical system - going to several doctors at one time - paying cash for prescriptions and having several prescription doses available for refill at all times. I self lab'd and had doctor run labs - kept notes of doses and how I was feeling.

I don't want to sound radical but it was the only way because I kept running into the "low TSH" issue and doctors wanting to reduce my dosages. When one would refuse to dose anymore - I would find another.

What was most helpful during that process was showing up on a medication dose and asking for a prescription to tweak the dosage to get me to a better place. Maybe a few white lies as well ;-)
 

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Discussion Starter · #20 ·
I think a lot of them are not good when it comes to people who have had their Thyroid taken out.

These guidelines are what a lot of them go by: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4267409/

These guidelines are interesting, but raise a lot of questions that to me require further studies. I don't know if further studies were ever done.

I did find this area which talks to people without a thyroid (I think that's what they mean).

If there is a possibility of low T3 concentrations during LT4 therapy in the general population, and if the levels achieved are of concern, there may be another subpopulation for whom this theoretically is of even greater concern. This population would be patients with athyreosis. Those who are athyreotic as a result of thyroidectomy do not retain the ability to generate T3 from intrathyroidal sources, an ability that may be retained in patients with AITD who still have some endogenous function. The ability to assess whether athyreotic patients, in particular, benefit from combination therapy that includes T3 is precluded by the small number of such patients who have been studied. Although the presence of athyreotic patients has been suggested to account for the positive outcome from one study of combination therapy (387), a meta-analysis performed in 2006 (389) did not find an association between positive outcomes from combination therapy and the athyreotic state. Another population who might potentially benefit from combination therapy is those patients who have the specific DIO2 polymorphism DIO2-Thr92Ala (390), although low serum T3 levels have not been documented in this subpopulation, and abnormal D2 activity has not been confirmed in this population either. This topic is fully addressed in recommendation 13b
 
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