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Discussion Starter · #1 ·
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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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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Discussion Starter · #3 ·
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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Discussion Starter · #4 ·
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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I suspect you may end up back at 100..... Just a feeling.
 

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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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Discussion Starter · #7 ·
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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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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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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Discussion Starter · #10 ·
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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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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Discussion Starter · #12 ·
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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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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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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Discussion Starter · #16 ·
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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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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Discussion Starter · #18 ·
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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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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Discussion Starter · #20 ·
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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