# New lab results...sort of good?



## GOLGO13 (Jun 13, 2018)

I've been on 94 levo for a few months now and I've felt the best I have since getting diagnosed. However, certainly not quite perfect. I've also been focusing on my nutrition.

Still, my numbers look like they are still a bit out of range. My history is in my signature.

Currently on 94 (half 88 and half 100) Best I have felt so far... TSH 3.671 uIU/mL (0.350 - 5.000)| Free T4 1.14 ng/dL (0.70 - 1.25)| Free T3 2.2 pg/ml (1.7-3.7)


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## WhatHappened (Nov 12, 2015)

I'm wondering if something else was in play somehow, significant weight gain or loss or some other factor that change or inconsistent pill routine or, or, or.... Your FT4 looks dialed in, FT3 not bad but your TSH seems high on 94 especially considering your TSH was sooo low on 100.

They started you on 100? How long were you on it? Wondering if you felt terrible because your body was still healing and TPO was still high? You don't happen to have the Ft4 from then?


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## GOLGO13 (Jun 13, 2018)

On march 23 my TSH was 1.0 and my FT4 was 1.65 (.82-1.77) At that time I was starting to get hyper symptoms...but I also had changed my diet and had lost some weight.

By the next visit april 6 my TSH was .727 and no FT4 was taken. At that time I really felt bad. Anxiety was crazy, hands shaking, all hyper symptoms except my heart rate was lowish. But my weight had come down. I don't think my diet was good at this time. I was low calorie without knowing it.

I think Later in april I switched to 88. This relieved my hyper symptoms but I started to get a lot of fatigue. I could tell it also was not correct.

My thoughts now are switching to the non-generic synthroid or Tirosint (supposedly hypoallergenic). See if that helps with my FT3 numbers.

I look at the FT3 and it seems pretty low


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## GOLGO13 (Jun 13, 2018)

Sorry...started on Levo 100 Jan 25 2018...switched to Levo 88 April. Been on 94 for about 2 months now.

I believe my inflammation was super high when I was on 100 and even 88. I had a lot of ER visits which were either inflammation or anxiety. Going Gluten free, dairy free, soy free, corn free seemed to help. I'm mostly not eating processed foods or processed sugars. This is why I was low calorie for a bit. Hard to get calories in that situation. That or the medicine started to help. I know dairy seems to cause be digestive issues. I tried reintroducing it and it failed.

Currently I feel inflammation is pretty low, diet is better, energy is much better but still not what I used to be. Maybe I'm 75-80 percent what I was 2 years ago.

I still would like to try other similar meds before broaching using T3 in addition to T4 meds


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## WhatHappened (Nov 12, 2015)

I suspect you may end up back at 100..... Just a feeling.


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## Lovlkn (Dec 20, 2009)

Your goal is minimum 1/2 of range for both FT-4 and FT-3 labs - closer to 3/4 of range.

For your lab range that means

FT-4 (( 1.295 - 1.5325))

FT-3 (( 3.2-3.7))

Do not rely on TSH for dosing - it can lag us to 6 weeks and does not reflect the free and unbound thyroid hormone in your system at time of lab draw.

Do you lab prior to taking your replacement hormone? It's a good idea to have a system when drawing labs - same time and without thyroid hormone prior to draw is a good rule.


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## GOLGO13 (Jun 13, 2018)

This was a new Endocrinologist and she took it after our session. It was about 3pm I think. So not before taking.

I've asked to be switched to the non-generic Synthroid to give that a shot. A lot of people I know have told me that helped them. But that doesn't mean it will work for me.

Wierd situation recently. I asked if I could just take 50 levo and my split 88 to make 94 rather than splitting 100 and 88 and taking half of each. She agreed and got me some 50s. Well, after 3 days of taking the 50 plus 44 I was a mess. I went back to splitting the 100s. I'm thinking the 100s from CVS must be stronger or the 50s are weaker or both. Either way, so frustrating.

So has anyone here switched between Levothyroxine and Synthroid? Did you keep the same number?


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## Lovlkn (Dec 20, 2009)

I've only ever been on Unithroid brand.

I have noticed a difference in labs since switching brand Cytomel to generic Lilothyronine. Stability is an issue for me - but I am getting older and my diet has changed so could be that as well.


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## creepingdeath (Apr 6, 2014)

My experience is it takes time for a dose to work. Months to even years. You have to be patient and suck up the madness....
Most people new to this want that quick fix and from what I remember about how I felt when this all first started, "I don't blame you"....
As for ever feeling like you used too.....I doubt you ever will.
Yea, after seven years adjusting doses ,changing doctors and going through almost every thyroid hormone out there I feel a lot better but not the way I was before.
Thyroid disease for me has changed me....forever.
Changed the way I take care of myself, The way I now take charge of my health concerning any health professionals.

"I'm the boss and they work for me".....

GOOD LUCK , take care and hang in there.
"It does eventually get better".....


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## GOLGO13 (Jun 13, 2018)

Small update. I was given 88 synthroid brand name and took it for around 8 days. I'm guessing they did 88 either because they thought it would absorb better (I think it did slightly), or the insurance wouldn't allow 94 via splitting pills. Well, after 8 days my heart-rate average (I track it during my sleep) kept dipping and I was feeling low. So I had to go back to 94 levo. They ordered 50s of the name brand that I could pair with splitting my 88s, but so far (and it's been awhile) that's not been approved. So I've been on the 94 levo again since Oct 12. My heartrate jumped right back up to normal after a few days.

I think this set me back a little, but I'm not doing too bad.

I think some people may find it interesting how quickly this stuff impacts me...even small dosage changes. My sister said dosage changes don't make too big a difference for her. But for me I can tell almost daily. I also have to make sure I take it consistently and correctly for these reasons. There was a time I was taking 100s certain days and 88 certain days to get to 91ish for the week. When I took 100 I felt hyper and 88 I felt low. I was glad when I finally got on a consistent 94. Though I think it's probably the slightest be too low. My last TSH was around 3.5. I have to say though, before I took the 88 I felt the best I had since all this started. But I feel like the brand name felt more correct for my body despite not being enough.

So not sure if I'll be able to try the 94 brandname or not. At least I know 94 levo generally works for me.


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## Lovlkn (Dec 20, 2009)

I do not believe switching brands will address your underlying issue - conversion.

It looks to me like you are a candidate for some T3 hormone - lilothyronine or brand Cytomel. 5mcg might be all you need. I personally would split a 5mcg pill and take 1/2 upon waking and the other 1/2 around 1


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## GOLGO13 (Jun 13, 2018)

I'm still a bit afraid of the T3 stuff. It could be what I need, but I'd like to see if my nutrition work is helping.

I'd probably have to go to my pharmacy to find a doctor who prescribes it. So far, I've not found a doctor who even wants to test FT3. I'm going to have to force my Endo to do it...but at least she did on my initial visit.

I will say the brand name stuff did feel a bit different. Not sure it's going to work and it is quite expensive. But I'd still like to give it a try at some point.

I've seen some articles that claim people had better conversion on the name brand.


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## Lovlkn (Dec 20, 2009)

> I've seen some articles that claim people had better conversion on the name brand.


Please share - I have never heard of anyone making that claim


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## GOLGO13 (Jun 13, 2018)

https://www.restartmed.com/synthroid-vs-levothyroxine/


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## Lovlkn (Dec 20, 2009)

No doubt that fillers are different in T4 formulations - that is why it's suggested to retest 6 weeks after changing brands of T4 hormone. This is why consistency of ingesting your thyroid hormone is important. Some people require more or less hormone if taking a particular brand/generic

All I can say is - if you are having difficulty with one "brand" of T4 then try another, but unless you remain on it for at least 6 weeks - then retest, there is no way to determine why you are having issues.

I for one have been on generic Unithroid - never have an issue and although I do have some minor changes in my thyroid hormone levels when tested - I feel this is simply part of life and my body using more or less as needed. Since our body cannot adjust thyroid hormone output because of the measured and consistent ingestion of thyroid hormone - I do occasionally fall into a hyper state.

For me personally - I notice more of an impact from using generic lilothyronine ( Cytomel) but am not willing to pay the huge price of generic Cytomel any longer.

Having just experienced racing heart - for the 2nd time in 6 months - I simply stopped all thyroid hormone for 1 day - but had labs prior to stopping for confirmation it was my thyroid hormone causing the issue. The rapid heart rate subsided within 12 hours after stopping all thyroid meds which pretty much confirms to me what happened was a slight over medication. Will know for sure today when my lab results arrive. The first time it happened I had just had labs and was at 3/4 range for both FT-4 and FT-3 which for me apparently is running a bit "hot" on the hormone.


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## GOLGO13 (Jun 13, 2018)

I think that's my worry with trying T3 at this point. I've been extremely sensitive to small dosage changes of T4. So much so that even two different types of 94 equivalent didn't seem to work the same. Maybe my current dose is working because I'm taking two split pills? Who knows. Maybe the way my gut processes them is better because they are already split a little.

I do know that 94 levo is the best I have felt. I have more energy, my anxiety has chilled mostly, and I'm in a better mood. Though I have also focused on getting enough calories, taking a high quality multi-vitamin, and taking 5K vitamin D.

Earlier I changed my diet to no gluten, dairy, soy, corn, and low sugar (mostly natural sugars from fruit). That seemed to calm things down quite a bit...And I'm finally having good stools which I have not had in years. Now, maybe some of that change could be attributed to getting the thyroid working better. So I can't say all that was the cause. But either way, I am doing way better now than I had been.

I was really in rough shape for a bit there. I'm glad I made it through that time frame and didn't have to stop working. My work people were very understanding and gave me quite a bit of leeway. I used up almost all of my paid time off going to doctors and appointments. Luckily I had a good amount saved up.

Now I think it's just going to be a wait and see if my test numbers get into more optimal ranges. Still, I think feeling good is almost more important than what my test numbers are. I just hope I can convince my doctors to do at the least TSH, FT4 and FT3. I've been very annoyed with Endocrinologists...I have been to 4 of them and I have found them to be hard to deal with. My current one has been the best one so far, but she's not very responsive to questions. I think I actually trust my primary care doctor more. I really lucked out with her...and the office is walking distance from where I live.

I really don't want to have to pay 75 bucks every time to go to a functional medicine doctor who will order the whole thyroid panel. I would if she was giving better advice, but she just wanted to sell me a ton of supplements (not really normal ones) and didn't even test to see if I had the issues those supplements were supposed to address.

Why is TSH the only test they do? Quite frankly I think it's really dangerous to go off of that. There are so many things that can mess up that test. Why wouldn't you want to back it up with FT4 and FT3? I guess it's just not in their training. As common as these issues are, why does it seem not too many doctors are on top of this issue? I know it's a complex issue, but still.


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## Lovlkn (Dec 20, 2009)

SO - the "word" is that the levothyroxine manufacturers are using a stronger formulation of T4 hormone. This is the chatter in the thyroid forum world and from a few friends having similar experiences with hyper bouts.

I for one have experienced 2 episodes since July when I refilled a prescription for Unithroid but it's not just Unithroid. Never in the last 15 years has my FT-4 been as high as it's been the last 5 months thus causing 2 separate hyper spikes. I didn't get to test labs the first time but did Monday and my FT-4 was above 3/4 range - taking the exact dose I have been on for years. I figured it was my T3 hormone but my FT-3 was below 3/4 range so it for sure was the elevated FT-4.

Just a heads up and reason enough to test every 3 months if you are adjusting doses. I would be happy with 1x per year dosing but this newest twist will have me doing private pay FT-4 and FT-3 labs between 6 month visits


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## GOLGO13 (Jun 13, 2018)

Well, my latest TSH today was 4.98. Blah. I know you guys are not fans of TSH. And of course the endo didn't order FT4 and FT3 like I wanted.

I will say I've been feeling pretty good lately, but I know I'm running out of energy earlier than I should. And I know I'm not quite right. My anxiety is down a bit though.

I finally have received the 50 name brand so I can split the 88 to make 94. But I have a feeling we'll be moving up to the 100 soon. To be fair, when i was having trouble on the 100 levo I was in poor health in general. My vitamin D was 20, my calorie intake was 1400ish, and I had lost a lot of weight in a short timeframe.

So we'll see what the endo says. I am switching to the name brand right away, but I think she'll want to try 100 again. Of course we could try 100 some of the week and 94 other times at first. I'm super sensitive to dosage changes it appears.


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## Lovlkn (Dec 20, 2009)

WOW! TSH is really high - poor thing - I would be stapled to the floor with a TSH like that.

You really need to insist they run the FT's or find a different doctor.


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## GOLGO13 (Jun 13, 2018)

I've actually not been horrible, but I do have a few symptoms which I'm sure are related. I have some numbness in my right foot toes and right hand fingers that come and go. When i would get up out of bed after sleeping, it sounded like I was at the ocean. Also I notice recently that my energy level is a bit low. Such as, getting soreness in my back (left side) after walking for 15 minutes (and that numbness in my toes). When I was on 88, that soreness in my left side of my back would come within a few minutes of walking. So it's an improvement.

I am unhappy about the FT numbers. I have an appt with her Jan 7 so I will talk about that. I know she won't do antibodies, RT3, etc. She did the FT4 and FT3 on my first visit. But obviously she's a TSH only type.

One thing I was pondering was some missing nutrient. I've felt much better since I've tried getting good nutrients (especially the ones which support thyroid functions). One nightI had a whole bag of mussels. That's about 60 of them and they were of good size. I felt amazing that night. That is 4000% B12, 1000% maganese. %600 selenium, 100% zinc, 300% iron, etc. So that maybe a sign of something. I know selenium is important and I am not taking my brazil nuts everyday. I do eat a lot of eggs which helps.

Hopefully the name brand does better. I'll be starting that soon. I may wait until after christmas so I don't have any issues during that timeframe.

I was very disappointed with that test, but I also knew I was likely low on stuff.


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## Lovlkn (Dec 20, 2009)

You can order your own labs and it would be cheaper than going to a doctor - and you would know for sure.

D0 you live in a state where you can order your own labs?


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## GOLGO13 (Jun 13, 2018)

I'll have to check. I'm in West Virginia


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## Lovlkn (Dec 20, 2009)

Have you ever had your B-12, Ferritin or D tested?


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## GOLGO13 (Jun 13, 2018)

Yes. My D level was 20 many months ago, but I have it up to 50-60 now.

Ferritin was interesting...but the doctor didn't have a problem with it. To me it doesn't look optimal.

84 ng/mL Range: 20 - 300 ng/mL

TOTAL IRON BINDING CAPACITY 346 ug/dL Range: 260 - 400 ug/dL

IRON (TRANSFERRIN) SATURATION 21 % Range: 16 - 50 %

IRON 73 ug/dL Range: 55 - 175 ug/dL

TRANSFERRIN 247 mg/dL Range: 180 - 360 mg/dL

Vitamin B12 Range: 232-1245 My value: 726​​
Folate (Folic Acid), Serum >3.0 My Value: 9.8​


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## GOLGO13 (Jun 13, 2018)

I'm on my first day of 94 equivalent (whole 50 pill and half an 88 pill) name brand Synthroid. Felt a little weird today and my palms were dry after taking the medicine today (I notice this often...palms look white/dry in the skin). Currently at night that dry/whiteness has gone away.

But energy level was fine and pulse seems to be up. Energy wasn't perfect, but better than normal I think. I track my pulse at night, and can tell when I don't have enough thyroid medicine. If I don't have enough, my pulse dips below 50 while sleeping. If I have enough, it stays between 50 and 65. When I was on 88 it would dip below 50. Interestingly, when I had lots of hyper symptoms on 100 levo, the only thing I didn't have was a high pulse. But I had tremors, had terrible anxiety, was having hot flashes, some night sweats, diarrhea, felt hot (especially back of my neck), etc. Since 100 isn't far from 94, it seems a bit weird. But I also wasn't in good health back then.

After going dairy, gluten,soy, corn, and processed sugar (mostly) free, everything seemed to calm down a bit. Though I was also adjusting medicine (and still am). So it's not really possible to make a for sure correlation. But since it's working I will keep with it. My stools are finally good (after many years of bad stools). I used to always be gassy, and now I am not as often. So things have turned around on many fronts.

I seem to react to adjustments in T4 medicine very quickly. When I was taking 88 on some days and 100 on other days, I felt hypo on 88 days and hyper on 100 days. I'm obviously very sensitive. Not sure if that speaks to anything...maybe some sort of deficiency or issue somewhere in parts that deal with thyroid.


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## Lovlkn (Dec 20, 2009)

You certainly are "in tune" with your body which is a good thing.

I can tell alot by watching my heart rate as well. You might consider adding blood pressure to your tracking mix. I've found my blood pressure has risen since my thyroid was removed. I'm an oddball and run an incredibly low blood pressure with high heart rate.

I'm dealing with a recent bout of hyperthyroid - high heart rate, anxiety - intense moods. I ended up cutting my T4 hormone down 1/2 a 125mcg pill weekly. I'm approaching week 4 and feel pretty good - although 4-6 days ago I was having alot of anxiety. Symptoms can and do overlap so be aware of that. Anxiety is gone, heart rate and BP are normal. Doctors appt 1/10/19 so hoping I can remain on this dose.

I personally think something is up with T4 ( Unithroid) and possibly other T4 hormone manufacturers. In 15 years on replacement hormone, I have never had this issue.


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## GOLGO13 (Jun 13, 2018)

I think it would be harder without a thyroid so I feel for you. I hope that gets figured out soon! I find the hyper symptoms to be worse than the hypo ones. Both are totally not cool.

I'm hoping the name brand synthroid will be more consistent now and into the future. It's quite a bit more expensive for me, but I'm not worried about cost if it works.

So far I'm not sure how well it's working. I'm only into day 3 though. I do know the pills are not easy to split, which means I'm not likely getting exactly 94 every day. That probably wouldn't be a problem for most people, but I seem to be sensitive to daily changes.

The first two days I felt like I had more energy, but felt a bit weird. Today I was low on energy (though feel good now). I think it will take a month or two to get things settled.


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## GOLGO13 (Jun 13, 2018)

So Synthroid is definitely different than Levothryoxine. But for me the difference isn't huge. The first two days I felt a bit weird. But I believe my body has gotten used to it. It appears to be slightly stronger, but just a little bit.

My Endocrinologist agreed to do FT4 and FT3 one more time, but she doesn't want to. She is a TSH only person (big surprise).

She also said something that makes me a little mad. Said my FT3 is fine and I have no problems there. "you have to be born with a problem with T3" she said and I don't seem to have an issue. However, if the FT3 is correct, it certainly seems to be on the lower side of things. Maybe it will come around. I hope the number looks better on Sythroid, but probably won't.

However, based on how I'm doing (better), I agree with her current strategy. I'm taking 94 6 days a week and 100 one day a week. We'll retest after 6-8 weeks (think I will do closer to 8), then if the TSH is around 3ish and I'm feeling better, we'll leave it alone. If it's still higher than 3 we'll move to two 100's a week.

I still think 100 is going to be too much for me. But if we get up to that fair enough.

My anxiety is way down right now, heart rate seems pretty stable. Still having some hypo symptoms (cold intolerance, some ringing in my ears, energy runs out early). But in general I'm in a much better place than I was a few months ago (and way way better than earlier 2018).


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## Lovlkn (Dec 20, 2009)

> My Endocrinologist agreed to do FT4 and FT3 one more time, but she doesn't want to. She is a TSH only person (big surprise).
> 
> She also said something that makes me a little mad. Said my FT3 is fine and I have no problems there. "you have to be born with a problem with T3" she said and I don't seem to have an issue. However, if the FT3 is correct, it certainly seems to be on the lower side of things.


You really need to find a doctor willing to test FT-4 and FT-3 at every lab. Because you are on replacement hormone they can do it based on insurance requirements. I've had it done everytime for almost 15 years now and would be lost without having both run.

A TSH of 3 is going to have hjypo FT-4 and FT-3 bit if you feel good there then stay there. I think over time you may realize you need more hormone. Optimal Ferritin helps when adding thyroid hormone and yours is a tad low - plus if you have a monthly cycle it only falls lower right after your cycle so it's important to know where in your cycle the lab is drawn.

As far as her T3 comment - YIKES!!! T4 hormone naturally converts to FT-3 hormone. Maybe she was referring to the natural conversion process meaning if you never had an issue in the past you won;t have an issue now - however, now you are on synthetic because your thyroid isn't working properly so the game is entirely changed. Alot of people do not convert synthetic thyroid hormone properly - me included.

Can you post your actual FT labs they just run please with ranges?


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## GOLGO13 (Jun 13, 2018)

Free T4: 1.14 ng/DL (.70 to 1.25)

Free T3: 2.2 pg/DL (1.7 to 3.7)

What is interesting is the more thyroid medicine I'm on the lower the FT3 seems to be getting.

However, this was on on Levo and I just switched to Sythroid. I know that shouldn't make a difference, but I want to see if it does.

Overall I am feeling pretty good lately, so I think I may have gotten any deficiencies addressed. Now it's just getting the thyroid hormones going better.

I think she seemed to be dismissive of people having T3 conversion issues. She must get a lot of people in her office claiming they have an issue with that. Just by the way she talked about it you could tell it was an annoyance to her. I got the same information from the other 4 endocrinologists I have seen. Many of them wouldn't even run the FT3 test. Since they dose based on TSH only that shouldn't be too surprising.

My thought is my best bet is to ask CVS who prescribes Cytomel and look them up. They would likely be a doctor willing to test T3 and be a bit more all inclusive on the testing.

I believe Endocrinologists are trained this way and that's what they do. Are they wrong? Hard to say, but it does seem to be a bit short sighted. I mean, if people like you have problems with TSH testing, then yes...it's very wrong. Or if the person was taking a supplement that interfered with the test (Biotin), then it's very wrong. I just don't understand why they wouldn't want (at least) backup for the TSH test. The FT4 and FT3 would at least provide some backup in case the TSH was weird.

For instance, if the TSH said .001 but the person felt good and their FT4 and FT3 are normal, then that would mean lowering their medication wouldn't be wise. Same thing the other way.

My first doctor said he wanted to get people to a TSH of .5. I was close to that but having lots of hyper symptoms (tremors, weight loss, diarrhea, night sweats, heat intolerance, etc). He didn't want to change it up because of the TSH number. I know some people do better at 2 and some do better at .5. So each person is unique. And maybe that's an indicator the test is debatable. Of course someone may have a problem with that area of their brain (like a tumor). Why don't they check for pituitary tumors just make sure that's not an issue?

My FT3 numbers continue to drop if you look at my signature. Despite more hormone being introduced. Quite possible it's being converted to RT3 instead. Probably because my body doesn't like it or stress was causing it to become RT3. Of course I'm guessing if I mentioned RT3 they would freak out.

All this being said, I agree with us slowing moving up my dosage (giving the name brand a shot). Taking 94 6 days and 100 one day for now. Test. If it's above 3 move to 2 days of 100 and 5 days of 94. Test. Adjust if needed.

And at least she was able to get me name brand. So it's not all bad. But as far as testing and investigating why I am not doing as well on this stuff, she's not the right person. My PCP is very good, but I'm sure she's a bit iffy about all the testing I've been asking for. She knows I have anxiety and am a bit of a hypochondriac (or I seem that way since I'm trying to ensure everything is correct so my treatment can go well). She's been the best doctor I have come across. But she's not likely a thyroid expert. Although she said she has treated people with this and never had to refer them to an endocrinologist. I almost wish I could just have her treat it and see if she would run all the tests.

Finding a decent functional or integrative doctor who isn't out to sell supplements or do hokey treatments is probably the best thing. But so far I haven't found that. And on the normal doctor route these folks are as good as I have found. So for now I will stick with it. But I will probably need to find someone willing to look at T3 numbers and if necessary prescribe Cytomel if I can't get sythroid to work right.

I always feel I ride a wave of being almost correct, but not quite. And if I add more hormone, my body starts to not like it. I have nervous twitches in the morning (after taking the meds) and feel low in the evening. Small changes in the medicine affect me very quickly (within days). Going from 94 to 88, my heart rate drops and my energy drops out quickly.

All this being said, when I was last on 100, I wasn't in a good state of health and it was the beginning of my situation. So it's possible I've gotten my body back in a place where 100 will be fine. I believe she thinks I'll be on 100 eventually. But I agree with her to slowly work our way there vice going strait to it again.

Thanks for all your help on this. It's good to talk to people with the issue. People who don't just think everything is in your head. Not having support with this issue is very difficult.


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## Lovlkn (Dec 20, 2009)

> Free T4: 1.14 ng/DL (.70 to 1.25)
> 
> Free T3: 2.2 pg/DL (1.7 to 3.7)


Your FT-4 is at 3/4 of range while your FT-3 is just below 1/2 range - which as you know points toward improper conversion.

If it were me - I would add Cytomel 5mcg split the pill and take 6 hours apart.

You need to be careful not to let your FT-4 push over 3/4 range as you will begin to have hyper symptoms. Because you switched brands - it's likely you will have movement in your FT-4 level.

To make it even more interesting... once your FT-4 pushes up over 3/4 and possibly the top of range your body will begin building reverse T3 which has it's own issues.


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## GOLGO13 (Jun 13, 2018)

All of what you said is very true. I'll have to wait on the adding T3 for now. I really need to get a different endocrinologist or someone who would supply that.

But I think you nailed it with FT4. I think it will be very interesting to see my FT4 and FT3 on the new medicine. Which is why it really surprises me she didn't want to run them.

When I was just starting to feel hyper (on 100 levo) these were my numbers on march 23 last year. Mind you I wasn't in the best shape at the time: TSH 1.02 (range .5-4.5)....FT4 1.65 (range .82 to 1.77). While I asked for FT3 they ended up running total which was 90 (range 71-180). The next time the TSH was .68 and I felt really bad. Mind you it may have been mild hyper symptoms in reality...but for me it was pretty tough. My anxiety was crazy high at that time. It was really hard to function.

So I think what you are saying is spot on. My RT3 ratio was pretty bad last time it was checked. But the number was at least in range. So I ride the wave of enough T4 to be functional, but not too much or I get hyper. But still not a ton of FT3 which would make me feel better.


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## GOLGO13 (Jun 13, 2018)

I talked to my primary care about her thoughts on T3 medicine. She was also not for it. She mentioned suppressed TSH and being worried about that long term.

I am very sensitive to the T4 medicine, so I'm not sure if it's a good idea. But I think if I can't get the name brand to work, I'll probably take further steps at a later time. She is a very good doctor in my opinion though in general.

People can do well on T4 medicine, but I'm not sure I'm one of them.

All this being said, I believe I was in bad shape when I was on 100 levo. So I'm not sure I was able to give it a real fair trial. It appears I will be slowly working my way up to it. Right now I'm 94 6 times a week and 100 once a week. I am doing OK, but likely still a bit low. I am as good as I have been so far in general...but still low in my opinion (lowish energy, cold intolerance, getting poor stools again, wooshing in my ears when getting up from sleeping, etc).

So my guess is my next test will show 4.5 TSH and sort of OK FT4 and low FT3.

After that I'm guessing I'll be on 100 twice a week and 94 5 days a week. Then I'll be 3.0 TSH (hopefully). And we'll do this dance for the next 6 months until it gets to around 2.

The good news is my anxiety is very low now. And I have more energy in general (but not as much as I should have).


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## Lovlkn (Dec 20, 2009)

GOLGO 13



> .FT4 1.65 (range .82 to 1.77). While I asked for FT3 they ended up running total which was 90 (range 71-180)


Your FT-4 is above 3/4 range The double (( )) is showing 1/2-3/4 of the actual range. ((1.295 - 1.5325))

You are now likely building Reverse T3 which has it's own issues.

Endo's really only focus on TSH. You are lucky you got the labs you did.

The lab's that do the tests have extra blood so when you get the results if you don't have the test you wanted - Call your doc's nurse and ask her to run. Because you have a diagnosed thyroid disorder the insurance companies will pay for it.

I've did this last week - first mistake from my doc not running the FT-3 labs in 10 years. Nurse took care of it.



> She mentioned suppressed TSH and being worried about that long term.


That is why you need to find a new doctor - Your current doctor is dosing you based on TSH - even though they run the additional labs they are dosing by TSH.



> I talked to my primary care about her thoughts on T3 medicine. She was also not for it. She mentioned suppressed TSH and being worried about that long term.


Having optimal FT-4 and FT-3 labs and a low TSH isn't going to be an issue and unfortunately this doctor will never "get it". I have had 4 DEXA scans since my Thyroid was removed - I run TSH of .0008 range - taking a good calcium supplement, having proper Vitamin D and Magnesium levels and doing weight bearing exercise keeps all in check. My bones took an early hit with being hyperthyroid for 7 years prior to my thyroid removal. I am osteopenia and am maintaining not decreasing. Age is the worst thing for bones - not low TSH or so my doctor keeps telling me.

Maybe try a Functional medical doc to at least get you on T3 hormone. Lowering your levothyroxine and adding 5mcg of T3 hormone is what you need to focus on obtaining.

Keep looking until you find a doc willing to work with you. While a functional doc office visit isn't covered by insurance the lab work is.



> So my guess is my next test will show 4.5 TSH and sort of OK FT4 and low FT3.


If that's the case - you will have perfect labs to give to your new doc. Make sure your doc runs the FT-3. I always confirm with the nurse, doc and the lab when they draw. If you ask enough they will eventually comply with your request and if they don't then find a new doc.


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## GOLGO13 (Jun 13, 2018)

I've been having trouble finding a good functional doctor. So far both of the ones I went to were pretty much scams. One was a total scam which was going to cost me about $5000 over 4 months...and wanted to do hokey treatments and $800 worth of supplements. I ran away quick.

The second one was much better, but still was pushing supplements which didn't agree with me. Never did any testing to see if I really needed those supplements. She did get me full testing which I appreciated. I could tell she didn't fully understand my labs and she wasn't going to be doing any managing of my thyroid. In fact, I don't think she was allowed to. I'd have to go to the city near me in order to find someone (it's about 1.5 hours away). That or go where my cousin goes (which is 2.5 hours). However, I don't want to spend the money out of pocket right now. I spent too much money on that this year and need to take some time off of it.

My PCP mentioned above is not managing my thyroid...though she does manage it for other patients. She is good for other issues though, so I am OK having her as my PCP. Of course her training will be the common thyroid protocol as it is with most Endocrinologists. All 4 endos I've been to are completely the same TSH only testers. Personally I'm not exactly sure who to trust with this stuff. I think there are a lot of debatable thoughts on all sides of this. I've researched just about everything I can on this and it's full of conflicting information.

Currently my Endocrinologist is managing and we are slowing increasing the synthroid to see what happens this time as we approach 100. I think it's worth giving the name brand a chance before I head toward the T3. But it's looking like ultimately I'll be heading there. I am currently as good as I have been right now.

Any thoughts between adding T3 to the T4 medicine as compared to NDT? My sister has been on Levo for 10 years and has never been right. I suggested she consider NDT or adding T3 to her current stuff.

My cousin is on NDT and seems to be doing well. But she ran into issues when one she was on (WP) ran into a shortage. The new one she went on (NP Thyroid) caused bad hyper symptoms. She is on Nature Thyroid now and seems to be doing well.

I'll post my test results when I get them in a few weeks.

I may try to go to the CVS and ask who prescribes Cytomel or NDT and look them up to see what kind of doctor they are. That could be a good way to find a doctor that looks beyond TSH.

I really really do appreciate all your help on this. While I think you are correct on what is going on with the T4 medicine. I'm trying to be patient and try the name brand before going to the T3...which will put me onto another doctor search...getting tired of that for sure.


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## Lovlkn (Dec 20, 2009)

> I may try to go to the CVS and ask who prescribes Cytomel or NDT and look them up to see what kind of doctor they are.


I've not had luck with pharmacies talking about what doctors prescribe certain drugs. Please post if they do - I'd be surprised

All you can do is keep trying new doctors - eventually you will find one. It took me 3 endo's ( many just 1 visit) and 2 GP's before I found the DO that has treated me the last 10 years. The Functional I saw did bill my insurance for $11,000 for tests , which they paid close to $9,000. I only paid a few hundred $. He ran some BS genetic testing which I did not expect to tell me all the drugs my body would interact poorly with - considering I only take thyroid hormone I didn't understand why other than a fraudulent angle. He sure did understand thyroid though - his knowledge was impressive - which as we all know with most doctors is rare.


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## GOLGO13 (Jun 13, 2018)

Quite rare it seems. Though I had a really good one via a service of my insurance called teledoc. You basically call a doctor for $5 and get advice. Unfortunately he was in Kansas and not close to me. I went through my issues and he says "you need to get a full thyroid panel including RT3 etc." I'm thinking I need to find this guy. He was primarily a ER doctor.

I wish I could email Endos and get their thoughts on treatment. Rather than keep going to visits and being disappointed.


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## GOLGO13 (Jun 13, 2018)

New labs pretty much same.

TSH
Your Value
4.829 uIU/mL
Standard Range
0.350 - 5.000 uIU/mL

THYROXINE (T4), FREE
Your Value
1.01 ng/dL
Standard Range
0.70 - 1.25 ng/dL

T3 FREE
Your Value
2.6 pg/mL
Standard Range
1.7 - 3.7 pg/mL

Looks like t3 free is up a little. Guessing they will want me to try 100 again. Hopefully not the same symptoms this time...or have me do 100 half time.

Doubtful I can get them to do a little t3. Probably the perfect time to try it since my levels are low


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## Pamzilla13 (Sep 9, 2013)

I would suggest looking up doctors in your area that prescribe bio-identical hormones...such as bio-identical progesterone. Even though you may not need bio-identical sex hormones, I find that these doctors are on top of thyroid conditions and run tests such as FT3 and FT4 regularly and they don't focus on TSH.

Key words to search for are Bio-identical hormones, ageless and wellness, natural hormones...

I'm located in Florida and know some doctors that take insurance...if thats where you are...


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## GOLGO13 (Jun 13, 2018)

Surprisingly, she said I should keep things where they are (because things are steady). I asked if I could try 100 twice a week vice once a week

I really wish I had my RT3 numbers. Maybe I'll try to get a full panel test myself somehow.

She even talked about my FT4 and FT3 numbers despite the fact that I almost had to force her to take them. Saying FT4 was about the same and FT3 went up.

We'll see if she responds. So far she's been not good about responding via the website.

I'm still thinking I need another new doctor....I'll probably do that in a few months.

Blah.


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## GOLGO13 (Jun 13, 2018)

Now she agreed to try 100 twice a week and retest. However it's back to TSH only. I'll have to find a way to get full testing outside my doctors.


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## Lovlkn (Dec 20, 2009)

GOLGO13 said:


> Now she agreed to try 100 twice a week and retest. However it's back to TSH only. I'll have to find a way to get full testing outside my doctors.


I take it you are in a state where you cannot order your own lab's?

Working with a doctor that only tests TSH it will be impossible for you to receive the proper med's.


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