# Q&A with an endocrinologist



## GOLGO13 (Jun 13, 2018)

This forum is not active enough so I'm going to post a few things here and there to get some discussion going. Google searches for this forum keep dropping down because it's not active. However, some of the forum regulars here have good historical knowledge and it would be a shame to lose it.

https://my.clevelandclinic.org/health/transcripts/1586_ask-a-thyroid-expert

The above link is an interesting Q&A from an endocrinologist (Jana Suman) who I have actually been to. However, I was pretty disappointed by that office visit. He was certainly not into doing T3 testing when I visited. He also wasn't the most personable person. But, his suggestion to me was probably correct and I wish I would have followed it. At the time I was having hyper symptoms pretty bad (strong anxiety, shaky hands, night sweats, heat on the back of my neck, etc). I was on 100 levo at the time. He suggested I take half a pill on Sundays and see how that goes. I wish I would have tried that at the time. Instead I ended up waiting and getting worse, then finally after seeing another endo I went to 88. Then I appeared to go too far the other way. And thus has been my journey with my TSH being weird.

My current endo is interesting. As you can see in the article, Jana is a fan of TSH 1-2.5. This is usually what I hear as an optimal TSH from endos and Functional doctors. Of course functional doctors are very much into FT4 and FT3 but they also look at TSH. Of course TSH can be a problem depending on your thyroid state (if you have a working one at all or not). So my current endo was not worried that my TSH was near 5 and said people feel better at different TSH levels. Sure, that's probably true. But I don't think a TSH of 5 is likely OK when you are on thyroid hormone. I will be giving this new brand name time to see how it goes though. I'm feeling about as close to normal now as I have been. But I know I'm not optimal.

In this series of questions he does talk to T3 and NDT a bit. He seemed more open to ideas in this line of questions then when I met with him. While you may not agree with everything said here...I think there is merit to understanding the thoughts behind endocrinologist's theories on thyroid treatment.

I know for myself, optimizing nutrients and my food has made a big difference. He points to that in a few areas here. I think that's something missing from most endocrinologists and PCPs when it comes to this issue. One thing I will say for the two Cleveland Clinic Endos I visited, they did talk to changing the diet away from processed foods and eating healthier. My current endo talks to exercise (though not much else). She did mention testing for gluten though I was already gluten free. So they know there are other factors to consider...what they may not realize is the reason those things may help is conversion of T4 to T3.

This is why I really want the following tests run every time: TSH, FT4, FT3, RT3. I'm working on increasing FT3 and hopefully reducing RT3. I do think these matter...but you can tell Endo's don't by their training. He even talks about humans not needing as much FT3 as animals. Now, that is interesting. I do think some people don't need as much FT3 as others. Most functional doctors want your FT3 in the upper range. But like TSH, I'm not sure everyone needs the same amount of FT3 as others. And that probably goes for FT4 levels also. Something to consider. I appear to be quite sensitive to dose changes. Whereas my sister said it doesn't make any difference for her.

There are many things that have to be looked at with this issue. It's not as simple as taking the thyroid hormone.


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## Lovlkn (Dec 20, 2009)

Golgo13,



> So my current endo was not worried that my TSH was near 5 and said people feel better at different TSH levels. Sure, that's probably true. But I don't think a TSH of 5 is likely OK when you are on thyroid hormone.


I would never continue to see a doctor who will only run TSH or dose by TSH. It can be a painfully frustrating search for a doctor willing to dose what medications you need as well as run the proper thyroid lab's to help monitor their effect.

I don't think anyone would feel very good with a TSH of 5 or even fairly good. If they were a good doc they would order further testing despite how the patient feels because it's just too high a TSH.



> This is why I really want the following tests run every time: TSH, FT4, FT3, RT3. I'm working on increasing FT3 and hopefully reducing RT3. I do think these matter...but you can tell Endo's don't by their training. He even talks about humans not needing as much FT3 as animals.


The training doctors get on thyroid must be minimal as the consistency of the majority not knowing how to properly test or treat their patients is alarming. No, I am not have a MD but I do live the disease everyday and therefore had to learn all I could about it - how to treat it and how others survive dealing with it. Having been on forums for over 15 years - it's easy to see the trends by reading about peoples experiences.



> Most functional doctors want your FT3 in the upper range. But like TSH, I'm not sure everyone needs the same amount of FT3 as others. And that probably goes for FT4 levels also. Something to consider. I appear to be quite sensitive to dose changes. Whereas my sister said it doesn't make any difference for her.


That is the truth and having seen one - I can attest to the truth in your first statement. I for one tend to feel best at 3/4 range for both FT-4 and FT-3 but find the "annual variations" to push me over into hyper too easily so I must try to keep myself somewhere close to but not quite 3/4 range. I've resorted to adjusting doses as low as 1/2 - 1/4 pill a week to help with my usual March hyper spike, every year. I have 2 sisters with Graves - one of which had her thyroid removed. She listens to her doctor - rather than her sister who has 15 years of journey under her belt - and her doctor so far has done a poor job of balancing her as she quickly went hyper post op - had a 2nd surgery to fetch some missed thyroid tissue and is now in dial in phase post TT. I hear very little so I guess some people just find a happy place - whether hypo or hyper and stick with it.

Not me - I like lab verification as how you feel can sometimes cause issues down the line without them as thyroid symptoms severely overlap.


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## GOLGO13 (Jun 13, 2018)

Thanks for your reply...they are always informative. I've got a scheduled appointment with a new endocrinologist in downtown Pittsburgh (the closest big city to me). She has a ton of positive reviews. So at the least I think she will be personable. So far I have not found the last 4 to be very friendly and that's important to me. Reviews also said she knew her stuff...so we shall see.

Hopefully she will also be more cool with me wanting FT4 and FT3 tests (and maybe RT3).

Somehow I am doing somewhat OK. I'm wondering if my next test will be better as I'm feeling a little better on the new medication. But I also know a few things are not quite right...so likely not correct yet.

I always feel like I'm on the fringe of OK, but any little stress or sickness pulls me into low thyroid quick. But going on more T4 medication makes me jittery and increased anxiety. My new endo was very hesitant to increase since I was having anxiety etc. She wanted to take it very slow, which I can appreciate.

As you already know I probably need a little T3 unless I can somehow fix it on my own (or the new meds work better)...so we'll see if the new doctor will be open to that. I'm surprised the doctors just assume you can convert well. I'm sure there are people that do, but there are likely a lot that don't.


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## Lovlkn (Dec 20, 2009)

> Current: 94 Synthroid Name Brand 6 days a week and 100 Sythroid one day a week TSH 4.829 uIU/mL (0.350 - 5.000 uIU/mL)| FT4 1.01 ng/dL (0.70 - 1.25 ng/dL)| 2.6 pg/mL(1.7 - 3.7 pg/mL)


When exactly did you begin this new dosage?

Scale of 1-10 how do you feel?

Your FT-4 range is the smallest I have ever seen. Below are the 1/2-3/4 ranges for both your FT-4 and FT-3

FT-4 (( .975-1.11))

FT-3 (( 2.7-3.2))

If it were me - I would try some selenium - maybe 200mg to see if it helps convert. Also remaining on the same dose for several months would be helpful to see if anything shifts with or without the Selenium. I did a short trial way back then got the offer for Cytomel so quit the selemium and went to Cytomel instead. I do recall FT-3 levels increasing slightly.


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## GOLGO13 (Jun 13, 2018)

I started the new dosage and brand name Synthroid Dec 26th. So it's pretty early in that process.

I'd say I'm at about 85% of what I used to be. Way better than I was last year when this all started.

I started having a brazil nut or two each day. Also taking a quality multivitamin, Vitamin D, a little bit of Magnesium Glycinate.

Now, compared to 94 Levo (which I was on for a few months), I do feel a bit better. Almost seems like T3 maybe on the rise. So we'll see how things progress.

I'm also working on increasing exercise, which I seem to be able to tolerate a bit better recently.

I find I'm just a bit fragile sometimes. Little by little I'm becoming more robust. But it doesn't take much stress to pull me back down a bit.

My blood pressure and heart rate have stabilized pretty good. So there are signs that things are on going in a good direction.


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## Lovlkn (Dec 20, 2009)

The question of what's "NORMAL" is hard to answer. I for one was sick for so long being hyper -then on anti thyroid med's being kept hypo for several years, then a few years post TT trying to find a good dose to be on - my "NORMAL" is not who or what I used to be but rather what I can tolerate now.

Thyroid disease isn't, something that usually " just happens" but rather something that develops over a long period of time - thus "NORMAL" is hard to pinpoint.

Age, weight, mental status etc all impacts our impression of NORMAL .


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## GOLGO13 (Jun 13, 2018)

Good points. I do believe I probably had this going on for many years not knowing it (possibly 10-15 years). But it really ramped up after a string of high stress situations and one traumatic situation. I think that all pushed it into gear and hit me pretty hard. I've worked my way back now, and I think I'm close to being OK.

At the least I am pretty functional now. I was getting a bit worried that I wouldn't be.


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