Latest labs-thinking possible conversion problem.

[bedheadblonde]

So my last post I asked about getting labs done at just after 4 weeks t see what they'd show on a slight bump in dosing my levo, I got the okay to go ahead a get it, and they were:

TSH-2.97(.45-4.5)
FT4-1.7 (.9-1.8)
TT3-68 (60-180)

Now compared to early November, the TSH has improved, (was 6.9 or so)but my T3 has not budged,(in fact it went lower) and with my Ft4 raised a tad, I think I do have a problem with converting. My appointment is Monday, so I'm going to ask about adding Cytomel-just a touch-to see if that improves my symptoms any (since I'm still cold, dizzy, losing hair, etc.) but I'm not sure if I'll stay on the alternating dose or just drop back to 88mcg and add in the Cytomel. I think things are finally falling into place for me, now that I see my TT3 is staying woefully low these past few months. (I'm also going to ask about FT3 and vitamin tests.)

[bedheadblonde]

Had a really terrible dizzy spell last night that lasted about an hour-almost felt like I was ready to faint and had to lie down for an hour before it passed. BP and pulse were okay during this time, so I'm not sure what that was all about. Still doing the quarter of 5mcg twice a day. Just wondering if it's raising my FT4, and I'm finally starting to feel it? (I mean it's been just over a week since I started it, but it was right up towards the top of the range.) Today I feel my 'normal' dizziness, ie; feeling a little off kilter when I walk too long, but not like I did last night. I remember feeling that way when I was too over medicated/before my Graves was diagnosed. Frustrating, but hanging in there.

[goolarra]

Well, you have a couple of suspects in the lineup for the sweats.  Give it a little time and see what happens.

Hope you can get out to get your blood drawn.  I see pictures on the news, and it isn't pretty.  

[bedheadblonde]

You figure it's only been about a week since I bumped down to 88mcg-and have only been on Cytomel about 6 days now. Night sweats occasionally happened before I even got on this new regimen, which I just figured was a symptom of hypothyroidism. Today I wasn't sweaty at all upon waking. I also did start a new low dose estrogen birth control a few days back, and I take it right before bed, so it could be just a bunch of hormones overloading me right now, heh. The Cytomel has been going okay so far-don't feel as tremory and have more energy and periods of less dizziness and brain fog, but oddly I still feel cold, even right after taking it, but that might mean a signal to start trying the actual 2.5 dose twice a day instead of the quarter twice a day like I have been.(or even trying 2.5 in the a.m. and then a quarter in the afternoon.) Just trying to go slow and steady as to not push me over into hyper land since my FT4 was right at the top. I'm getting a FT3 lab drawn asap to get a baseline and see where I'm at and make sure it's not actually high (even though I'd be really surprised looking at the TT3's I've been having) Just have to figure out a day to do so since the weather looks pretty terrible these next few days, but hoping it holds out long enough to get me to the lab! Also getting ferritin done since my basic iron labs were a bit low, want to see where that is at. Since its a holiday, I haven't heard back from my endos office about doing the stress hormone tests yet like it was mentioned, but I'm going to light a fire under their keesters-I do want to make sure those are alright.

[goolarra]

Odd...of course, your FT3 level is going up, so that might be what's happening.  However, levels usually peak about three hours after taking T3, so you'd think FT3 level would be pretty low in the morning before taking it.

Can you think of anything else that might be causing this?

[bedheadblonde]

Huh. Oddly enough, I slept in these past two mornings (got up to take just the levo and fell back asleep) and seem to be sweating before I get the cytomel in me?

[bedheadblonde]

Thanks, goolarra. I think I'll definitely try adding the second dose just a bit sooner to see if that helps avoid that crash. I've heard of some people splitting their dose into three, not sure if I'm ready to try that quite yet or not, but I'll keep it in mind as the weeks go on. I have been taking the first dose with a little food, I might  try taking the morning dose on an empty stomach if I'm not noticing a big difference as the weeks continue to see if that makes any sort of difference as well. I do know right now its just a waiting game as T4 drops down, and I'm not about to go off my schedule too much to skew how I feel-I want to remain consistent as much as I can just to make sure I know how I feel with this stuff.

Oddly enough, today I didn't really sweat after that first dose, hopefully it's just a temporary thing as my body adjusts to it. I'll keep track of it to see if I continue to do so, and let them know if I do.

[goolarra]

You can definitely play with the timing of the second dose.  You can try taking it a little earlier to avoid the symptoms you've been having just before.

You do have two things that need to balance out.  T3 will have a much more immediate effect than cutting back on T4.  That's why it's often best to work your T3 dose up slowly (which you are doing).  I'd give that some time.

A few hyper symptoms (like sweating) when you first start T3 aren't unusual.  However, if that persists, talk to your doctor about it.

[bedheadblonde]

Alright so day 3 of doing 1/4 of 5mcg at around 8 am and another 1/4 around 2 :

The morning dose I take 2 hours after my levo, and after I've ate a little something. I still feel dizzy (I wasn't expecting to instantly not be) but it seems my palps and shakes ease up, and my bp does great...for a while. An hour or so before I take the second dose, I suddenly feel terrible-dizzier than usual, shaky, my heart will race, and my bp goes way up. Taking my second dose eases this a bit, but not a whole lot. This normal as my body gets used to the drug? Or should I try taking my second dose a bit earlier before this feeling hits? Just a matter of waiting as my levo balances out since I was bumped down to 88mcg at the same time? My FT4 was on the high end of the range, so I'm not sure if it's kind of freaking my body out.

Also, normal to sweat so at first?  In the a.m. when I'm not feeling so terrible,  I noticed a lot of sweating, but not really being hot. Just sweat!

[bedheadblonde]

My problem is I don't know if my dizziness (my main complaint) is from the low iron or my thyroid. I guess I'm going to have to see what the T3 does to determine, and in the meanwhile, increase my iron intake.

[gimel]

From what I have read, the recommended level for women is around 70-80.

[bedheadblonde]

Yeah, some say 70 is about where you should be at a minimum.

[goolarra]

Your iron is probably more than a bit low.  I believe the recommended level for women actually starts around 70, but don't take my work for that.  I'm sure you can find that number online pretty easily.  

[bedheadblonde]

My iron labs came back-didn't see ferritin (of course) but my Iron and Iron saturation is a bit low-Iron was 49 out of a range of 50-170, Iron saturation was 16 out of a range of 15-55. TIBC is 315 out of a range of 250-450. Looks like I need to work on raising both Vitamin D and Iron-I admittedly haven't been consistent in taking my iron pills. Wondering if I should switch to a liquid for better absorption? I've tried that Floridix in the past and actually like the taste, but again: wasn't consistent in taking it every night like I should of been.  I already picked up some higher liquid Vitamin D to take since I'm consistent on taking D3 gel caps, but I think a bit more would help.

[goolarra]

TT3 is considered an obsolete test.  It's been replaced by FT3, which offers much more useful information.

FT3, FT4 and TSH are absolutely essential every time thyroid labs are drawn.  If you have already tested positive for antibodies, further testing is redundant.  Once we have antibodies, we have them for life, unless the thyroid is removed.  Swings in antibody levels, even big swings, are insignificant.

[VitaminB12]

Thank you for your post. I'm curious about TT3. I've never had that tested. It seems that doctors are often not willing to do all thyroid tests at once. They seem to pick and choose. So how can they get the big picture? Sometimes my doctor would only test TSH. Lately he has added Free T4 and even more recently Free T3. I haven't had antibody testing for a couple of years so I think they are overdue.

In addition to having Vitamin B12 and D tested I would also suggest you might also wish to consider iron (ferritin) and potassium level checks.

I've got two posts on this forum about hypothyroidism.

[goolarra]

Your B-12 looks good.  Vitamin D is on the low side, as you say.  D is also necessary for the transport of thyroid hormones into the nucleus of cells, so you want to work on that.    Many of us find D has to be well up into the range.

Merry Christmas!

[bedheadblonde]

Pharmacy had to order it yesterday, it's in today, so I'll begin it tomorrow. I'll keep an eye on my symptoms and how they go while taking it, and in the meantime, look into a doctor here that tends to run many tests for thyroid and saliva hormones and all that good stuff the endos here won't do. My Vitamin B-12 came back as 814 in a range of 200-1000, so I doubt I have a B-12 problem like they thought, though my Vitamin D test came back as 40 in a range of 30-80, so upping my dose of it might help my achy muscles I get occasionally. I'm grabbing a liquid form of it to see if that absorbs better. (though my D levels in the past were right at 30, so it is honestly an improvement.) Still waiting on the other tests to come back, then I'll see if he wants to do some stress hormone tests like he was thinking. Not against them just to be sure, but yeah, my thyroid labs seem to be a huge red flag here, I agree.

[goolarra]

I didn't realize it was the same CNP that you saw; I thought you'd seen someone else in the office.  How much of a red flag do they need?  FT4 near top of range, TT3 on the floor...it doesn't take a rocket scientist...  

It might be worth it to shop for another doctor, then, while you can do it at your leisure.  At least you're getting T3 in the meantime.

Have you started it yet?

[bedheadblonde]

That is who I saw today, is the best part. He mentioned the last time he thought I wasn't converting well, and then today he blindsided me with this. I mean, I'm thankful they're going to let me try it, but I'm more confused than anything on why he would go from "sounds like you're not converting, let's alternate your T4 dose to see if that helps" to trying it, not feeling better, seeing those labs, and now a, "I don't think it is a problem but we can try it, but I think there's something we're missing and it's not thyroid," even though my FT4 and TT3 are at way different ends, here. Again, I'm glad to rule out everything and anything, but I feel like I've been through this vicious loop of tests and scares and people referring me for MS or Parkinson's testing to brain tumors and the whole like, and not a thing was found. It just bums me out that the CNP doesn't want to look at free's unless they're way out of range.

[goolarra]

That is a slap in the face; I agree with you.  However, I also tend to agree with flyingfool...you're getting the meds you want.  So, as long as they look at your TSH, and you look at your FT3/4, and both come to the same conclusions, you might hang onto them for a while.

You mentioned that the CNP you usually see had thought you might not convert well.  Apparently, s/he is looking at FT3???  Perhaps you could make your appointments with her from now on?

[bedheadblonde]

You're correct in that at least they are open to using Cytomel-I know a lot of people struggle to find someone who will prescribe it to them. I don't expect a huge change with 2.5, but they wanted to monitor me since I am one of those that can be sensitive to medications. Starting low and slow for now. I'll keep in mind about the T4 dose needing time to adjust!

[flyingfool]

Well before you go Dr shopping.  You have it pretty good.  You are getting medication and they are open to using T3 medication.  That is better than most people get.

If you are able to continue to persevere and they seem to follow your symptoms and your lead about medication dosages, I may be inclined to leave sleeping dogs lie at least a little longer.

They are still sold on the idea of "reference range endocrinology".  That is, if it is in range it's good enough.

If you simply keep demanding that they use the useful tests of Free T4 and Free T3 and forget the outdated Total T3 tests then that will be a huge win.

I suspect that you may notice a difference as I think you are correct that it may be a conversion problem.  Don't expect major changes with a small 2.5 mcg dose. But it is still better than nothing and it is good to start low dosages as some people are really sensitive to T3 medication.

Also know that it will take several weeks for the T4 medication reduction in dosage to take effect and it only takes hours for the T3 meds to get into your system.  So just don't be too quick to make determinations on how you feel as it will take time to settle out.

Be honest but with the this change, the Dr will be curious as to h ow you feel.  If you tell them that you feel nothing, they will probably say "see told you so" and maybe remove the T3.  So if you feel better then make sure you tell them that and reinforce that you are now on the right track.  And this would then make it a bit easier for the Dr to increase your T3 medication again.  

Just my thoughts.

[bedheadblonde]

Welp. I got the okay to back down to 88mcg and try out 2.5 Cytomel to start with, but today was very disheartening-I usually like these guys, and I do want to make sure it's not something else causing the dizziness, coldness, fatigue, hair loss, brain fog, occasional palps and tremors, etc. but I got told that I need to "stop focusing on the T4 and T3, they really don't matter if they're in range." I got vitamin tests done and also a couple things I forgot, he may look into adrenal/cortisol tests as long as my vitamin tests come back fine, and don't get me wrong, I want to rule out everything else. But to tell me T4 and T3 (free, I mean, of course) don't matter? Yeah, I was just angry. I've been through enough trying to convince people I was overactive for so long, and they realize my thyroid is a sneaky one (as in it took the uptake and scans to show how badly overactive it was and not the labs they drew) so I'm just so discouraged I'm getting this thrown at me. I think 2014 is the year I go doctor shopping.

[bedheadblonde]

They've done FT3 in the past, so I don't get why they just don't always do it-I'll bring it up, perhaps it's something I have to specifically request for now? Very weird, bt I'll ask to see. I wasn't completely sure I had a conversion problem since my T3 raised in the past, but that was when I was completely over-medicated, so I think now that I'm somewhat in the ballpark, adding just a small touch of Cytomel will help. And scaling back on the T4 med, too, seeing as you're right-I'm very close to going over the range. Luckily, the CNP I usually see at the endocrine office had brought that up before that he thought perhaps I wasn't converting correctly and they're fine with handing out Cytomel, so hopefully Ill be able to get on track soon.