At a total loss...and endo took me off Armour

[PiperAnne]

I would appreciate anyone with knowledge of this as I'm feeling pretty desperate right now.

I was diagnosed with Grave's and Grave's eyes 15 years ago and  I had radiation and an orbital decompression. I ended up on Armour and for 15 years had virtually no problems. After the birth of my daughter 4 years ago I began to have problems and getting sick often. I was diagnosed with Common Variable Immunodeficiency. During this time my thyroid has been extraordinarily difficult to regulate. I was told my long term prognosis was not good unless I received IVIG, AND my first round of IVIG WAS 2 weeks ago, which is basically a blood transfusion I receive monthly for healthy antibodies. My thyroid stimulating hormone (TSI) has been slightly elevated at 137 (should be below 130) since the birth of my daughter. At times I have been severely over medicated on Armour and Unithroid and recently  my meds were cut in half. Since my daughters birth I have had "symptoms of TED". My right eyelid has dropped and has edema/inflammation. My thyroid has not been within range in 4 years.

Fast forward this week: I was sent to a new endocrinologist who told me Armour sometimes can cause TED. She took me off the Armour and raised my Unithroid and put me on 5mcg of Cytomel. It's been a week and I feel really sick. Nauseous, headaches, joint pain, I'm exhausted, chest pain. I never cry, and try to take all this in stride, especially for my daughter's sake, as this is very difficult for her.  
But I can't get out of bed in the morning and I have been a crying fool which is embarrassing. In fact, I don't want to get out of bed, I feel so horrible. I have been on these meds a week only, but I can't go to the bathroom, I have GERD, and the ocular pain has not subsided at all. I have had chronic sinus infection with 2 very serious strains of bacteria, so I'm on long term Cipro. I'm supplementing with vitamins and was taken off wheat in an attempt to calm my TSI. Coincidentally, I had begun to feel a little better the first week after IVIG until switch in meds.

Two months ago my TSH was undetectable and I was on 25 mcg of Unithroid and 120 mgs of Armour.

I was changed to 50 mcg of Unithroid and 60 mg of Armour and these were my results a week ago, taken in the morning, had NOT taken meds yet.

TSH.  .032  
Free T4. 1.02  (.8 - 1.6)
Total T3    46   (80 - 120)

My new meds are 100 mcg Unithroid and 5 mcg Cytomel.

I am really lost on this and I don't have a lot of confidence that switching my meds was the answer. My T3 was in very low range when I was on all that Armour, now I'm on even less. I know the IVIG was most likely a shock to my system, but to couple it by completely changing my meds seems to have exasperated the situation.

Please help!

Piper

[PiperAnne]

Hello Barb,

I hope you don't mind me bringing you back to this conversation so many months later! When I first posted I was going through a very difficult time with my meds and doctors. You had mentioned being on Tyrosint, and coincidentally, a new doctor put me on. Tirosint in February. It has been awesome. The doctors tried Naturthroid and NP, but tirosint really seemed to make a difference. So much so that I asked my doctor to completely take me off Armour (I am on 60 mgs Armour and 50 mcg Tyrosint) and up my dose of tirosint and add cytomel. Well, that put him into a tailspin. He told me to just stop the Armour all together and stay with the 50mcg of Tirosint. I started laughing and said...that's like more than half my dose! I had rai...I have no thyroid, I could totally crash. So he agreed to put me 75 mcg Tirosint and 5 mcg of Cytomel. I think it is a good starting point, but he said to stay on this for 6 weeks. I don't want to feel horrible.  Here are my most current labs, I make wondering if you could guide me on this...he didn't seem to know what I was doing. Shouldn't I start slow with like 2.5 of cytomel and work my way up? I would like some advice as I have an appointment with him next week for a follow up visit.

TSH .16. (.3 - 4.2)
Free T3 2.6 (this was after I took my Armour unfortunately)
Free T4 1.0 (.9 -1.7)

Your thoughts would be appreciated since it sounds like we have had similiar responses to tirosint and T3.

Thanks,
Piper

[PiperAnne]

Thanks, that helps. I've been on Armour so long, I'm not used to how quickly cytomel tends to burn through itself. I didn't realize when people said "suppressed", they were speaking of literally being AT zero.  

Thank you, Amy

[ahmee]

TSH essentially means nothing at this stage in the game. I, and others on this board, have a TSH that is almost at 0, like yours. TSH tends to be suppressed with adequate treatment. It is Free T3 levels that have been shown to correlate best with symptoms, so if in the future you can get Free T3 tested instead of Total T3, it will be much more illuminating for us.

10 mcg cytomel is a lot less T3 than the 18mcg you were receiving from 120 mg Armour in the past, but close to the dose of 9 mcg you were receiving at 60 mg Armour plus 88 mcg Unithroid. Perhaps you could use more cytomel; even though your test was for Total T3, the result was so far under the range that it seems very likely your T3 levels are low, which could be encouraging your weight gain. Your Free T4 levels look good on paper, at approx 57% of range.

If you feel your body isn't adjusted to the cytomel yet though you can always wait a little longer to see if you tolerate it better. You can also try alternate methods of dosing, like 3x a day instead of two. Or, just tweak the times you take it currently. I find that taking my second dose an hour or so before the time I would start feeling tired helps me avoid any sort of afternoon crash.

[PiperAnne]

Thanks for your response. I'm so curious how quickly my doctor will raise my cytomel.  I've been on 10mcg, but I've packed on 10 lbs in one month. I've been the same weight since high school, and I'm 41 years old. It was like I woke up literally overnight and it happened. I know she is being cautious, but my old meds were 60 mg Armour and 88 mcg Unithroid.

Isn't 100mcg Unithroid and 10 mcg actually lower? To everyone out there, I have a few other diseases and even require monthly blood transfusions, but regulating a thyroid gland is arguably the most frustrating health issue I have ever encountered!  

[bedheadblonde]

I'm about to start Cytomel myself so I can't speak personally, but my understanding is Cytomel can pack a bit of a whollop for some, especially during the first couple weeks or so. However, if you're feeling fine with the 5mcg dose in the morning, and then not so hot after that next dose later on, it might be worth to experiment and just try half for your afternoon dose to see if that helps your heart rate and wired feeling over the holidays until your doctor comes back in. If you find that's better, I'd tell them you would rather be talking 2.5 of it for your later dose.

[PiperAnne]

Hey Everyone,

Happy holidays!  I spoke with my endocrinologists' nurse. She's said my doctor felt after so much time trying to regulate my thyroid on natural dessicated, it was time to pull me off and get more control switching me to cytomel and unithroid.  She said, if one number is low, you can add to that particular thyroid hormone without completing changing numbers across the board. So moved me to 100mcg of Unithroid and put me on 5mcg cytomel twice a day. I don't want to be a complainer, but the T3 in cytomel is not quite as "smooth" as natural. My pulse rate goes up to about 100 just sitting around!  I don't feel bad....I wake up great in the morning and after the first dose of 5 mcg...I get a lot done and feel normal. It's toward the afternoon, when I get tired, take second dose...and I'm tired but wired with a slightly racing heart. She said it was comparable to the amount in my Armour.

I understand this all takes time, I just want to be as comfortable as possible for the ride. My doctor is not in because of the holidays...I was wondering if I could just take 2.5 mcg in the afternoon or if I stay the course and my body will get used to it?  I've never used Cytomel, does your body react differently? If it's just something I have to get through for another couple weeks it's fine. If it's normal, then I can deal with it.

Thanks!

[PiperAnne]

Hey Ahmee,

I have been patiently waiting for my blood results! While my T4 has greatly improved, my TSH is very suppressed. My T3 is up a bit, but still in low range. These results are without taking meds prior to test. I would like to know your thoughts as my TSH being THAT suppressed seems too low.

TSH .0005
Free T4  1.36. (.91-1.7)
Total T3    64    (90-178)

I'm on 88mcg Unithroid and 60 mg Armour. Previously I was on 62.5 mcg Unithroid and 60 mg Armour.

Any thoughts would be well appreciated.

[ahmee]

That's great that your doctor was willing to work with you. NP is 38 mcg T4, 9 mcg T3, just like Naturethroid and Armour. They are all just different brands with different fillers. While it's true that T3 builds up in the blood rather quickly and you should feel the full effects within a week or two, you will want to wait the 4-6 weeks for the T4 to take its full effect. The idea is that your body may be able to convert some of the T4 to T3 as well, giving you a boost. Your next set of bloodwork should reveal a lot. So it's great that you have a doctor to work with who seems very knowledgeable!

As to not taking T3 meds before the test-- T3-containing meds create a temporary spike in T3 levels for several hours after you take them (which is why we split doses, to spread the spikes out a bit), and it's not very representative of your baseline levels to include that spike in your test results.

[PiperAnne]

My immunologist took your suggestion! She actually put me on 88 mcg of Unithroid and 60 mg of NP thyroid by Acella. I had never heard of it, I actually thought she would switch me to Naturethroid. I was excited she took the reigns in this. But the last couple days I'm not feeling any real boost. I'm curious, isn't NP similar enough to Armour that I would feel it. Or is it different enough that it may take time to adapt to? I'm sticking it out. When is the appropriate time to check my levels. She said I could get my free T4 and Free T3 done in 4 weeks. And we can decide at the time whether to up my NP.

Thanks!

[PiperAnne]

Great advice. Thank you. I'm just wondering, if you don't take your meds before your labs, won't your T3 always look lower than it really is for the rest of the day. I've been below range for the better of 3 years, but I never take meds before my appointments. I guess I'm trying to understand the logic of how best to optimize T3. And yes, I do understand that the best measure is how you feel, but once your feeling well, you should be able to nail down that number and I know for future reference.

Thanks!

[ahmee]

A good reminder as always. I am not a doctor! Just an opinionated fellow patient.

Iron should also be kept apart from thyroid meds by 4 hours.

[Barb135]

Ahmee is giving you some good advice, but you have to remember that we aren't doctors, so you'll need to discuss all this with your doctor.

Most people on a medication with a T3 component find that it does work best if the dosage is split into 2 or more.  We also find that many people on Armour have FT4 low in the range, because of the T3 in Armour.

You should also be careful to separate thyroid meds from supplements, particularly, calcium and magnesium because they inhibit absorption of thyroid medications.  Separation should be 3-4 hrs.

I would add that you should be sure your doctor is ordering Free T3 with every blood test.  If not specified as Free T3, FT3, T3 Free, etc (the term Free or F should be present), we assume it to be Total, which is obsolete and of little value.

[ahmee]

I take the first dose around 7:30am, and the second about 12:30 or 1pm. Everyone is a bit different, and you can go by how you feel throughout the day. The peak effects of the T3 last for 5-6 hours. You don't want to take it too late in the afternoon or you may have trouble falling asleep. Same for taking it right before bed, it might keep you up and you'd lose the peak effects during the day, when you'd want the energy from it the most. So best to take Armour or cytomel during the morning and early afternoon. The Unithroid you can take in the morning or before bed if you like, assuming your stomach is empty then (no food for 4 hours prior).

[PiperAnne]

Wow. That is amazing information for me. I'm actually trying to optimize this with my immunologist and with the amount of knowledge you have to offer will no doubt be useful. Because I have never split doses, in general is there a rule of thumb for when to take it during the day. At bedtime, before dinner?I'm a morning riser and typically take my meds between 6:30-7am. I'm not sure if that makes a difference as far as hours separating next time of dosage.

I am grateful for your time! Much appreciated!

[ahmee]

Yes, your Free T4 was quite low the whole time, in the bottom third of the range. I really think it could help to add additional T4 to your meds. Keep in mind it's important to wait 30 or more minutes if you can after taking the morning dose so the T4 is absorbed before you eat/drink or take other meds. It could be that since you are having these transfusions they are somehow affecting your ability to store hormone (T4); I really don't know about that.

I would start with the 60mg Armour + 25 mcg Unithroid in a.m., 60 mg Armour p.m.; then retest in 6 weeks and see how your levels are. I'd expect that after those 6 weeks your T4 would still be inadequate and you'd need to raise the Unithroid, but you'll have to wait and see how you do. If too much direct T3 from the Armour really is the problem, you will always have the option to cut back the Armour and add more Unithroid in its place; but I have a feeling that it may be the T3 spike that is causing your problems, and splitting the dose into two should help level out the delivery of hormone throughout the day. If you got away with taking the Armour once a day without crashing mid-day, you probably convert T4 to T3 to some extent, so you will probably see your T4 and T3 levels rise as you raise the Unithroid.

The rule of thumb for Free T3 levels is upper third of range, and that is without taking meds before the blood draw. And yes, T4 will not be effected either way.

[PiperAnne]

Actually both of your suggestions could work. I'm just trying to figure out if it's better to work from the T4 angle or split the Armour dose. You still think I need a small amount of unithroid...25 mcg?

[PiperAnne]

To be honest, I took Armour for 15 years and never had to split the dose! I was fine and energetic. Once my numbers tanked I continued to take it the same way until my internist mentioned splitting it. But that was in October, 2 years passed the problem. I think my Cvid interfered with how my thyroid was being absorbed and it just stopped working all of a sudden.

So you think 60 mgs morning and 60 mgs in the afternoon and then just wait 6 weeks, get it tested, and then add back the unithroid?

Should my T3 be in midrange even if I get a blood draw in the morning before taking meds? T4 is built up in the system, so I understand that should not be effected.

Thanks!

[ahmee]

Wait, let's back up a second-- you weren't splitting your dose! That can explain a lot. It's very important to split the dose in two!

I wrote the above advice on the basis of your feeling hyper taking 120 mg Armour + 25 mcg Unithroid. But if you weren't splitting your dose in two, no wonder your heart was pounding! Was it happening mostly in the morning? Gone by afternoon?

I was wondering why your lab values were less than hyper when you were experiencing hyper symptoms, but that could explain it. Perhaps you should return to the 120 mg Armour then, but split that into 1 grain upon rising, 1 grain early afternoon. You can take the entire dose of Unithroid upon waking with the first dose of Armour. Perhaps give your body 4-6 weeks to rest and readjust to this new style of dosing, then retest. You may feel a lot of relief just from the double dosing. But if your T4 still stays low, I would dose up the Unithroid thereafter in 12.5-25 mcg increments.

[ahmee]

Great, this is very helpful. I was under the impression that you were feeling good at 2 grains Armour + 25 mcg Unithroid, but it seems you were having hyper symptoms then, so we can conclude you were likely overmedicated. Was your heart rate high at the time of the 2/14/13 test? I'm trying to discern why your Unithroid dose was lowered then.

It's unfortunate that some tests are for Total T3 and the 10/3 test is Free T3 since that makes it harder to compare, but from that 10/3 test we can see you were at 75% of range for T3 and 29% of range for T4. It's interesting because those numbers don't look hyper; they look a bit hypo if anything (considering the T3 value is inflated due to taking meds 3 hrs prior). Heart palpitations can signal both hyper or hypo; a heart beat of upper 80s isn't actually considered abnormal going by the guidelines of 60-100 bpm. But since you've experienced hyper symptoms in the past with Graves I'm sure you recognize those symptoms when you experience them. It makes sense that perhaps that dose of Armour was just too much direct T3 for your body to handle, and not enough T4. This is why supplemental synthetic T4 can come in handy for those on Armour. You would want to lower your dose of Armour and add in more Unithroid. I think a higher dose of T4 is going to be very important for you since it has been very low this entire time.

Let's go back to what you were taking when you were having hyper symptoms (high heart rate):
120 mg Armour + 25 mcg of Unithroid = 101 mcg T4 + 18 mcg T3
Free T4 29% of range, Free T3 75% of range

But you feel hypo on just this:
100 mcg Unithroid (T4) and 5 mcg Cytomel (T3)

I can see now where your endo was going by giving you the above dose. But it stands to reason that you will need to take upwards of 100mcg T4 and a yet-undetermined amount of T3 that is perhaps more than 5 mcg, but less than 18 mcg. This might be easier to dose individually, by staying on the Unithroid and dosing up 12.5-25 mcg every 4-6 weeks and see how well your body converts the T4 into T3. So as a starting dose I would opt for 125 mcg Unithroid + 10 mcg cytomel. If you really want to stay on Armour, I suggest you back off a bit to 1 grain (60 mcg) plus 88 mcg Unithroid. This will bring your dose to 126 mcg T4 and 9 mcg T3. You will want to dose up T4 after that until you are in midrange, and then can substitute in additional Armour as needed. Retest every 4-6 weeks and be sure that Free T3 is tested. And of course, feel free to post future lab results in this thread if you like.

[PiperAnne]

My current labs which I posted first are 60 mg Armour and 62.5 of unithroid. I definitely felt hyper on 120 Armour and 50mcg of Unithroid. BUT... I was taking it all in the morning...not splitting dose.

[Barb135]

Is it safe to assume that your endo is trying to adjust your med level based on TSH?  If so, she is going to keep you on a roller coaster and you'll not feel well at all.

None of the labs you posted indicate hyper; the 10/3/13 ones came closest to indicating hyper.  I had heart palpitations and pounding heart beat when I was severely hypo.  My TSH has been < 0.01 for over 5 years and I've never been hyper, once.

Just to make sure I understand, am I correct that the latest labs, listed in your original are the latest and you were on 50 mcg unithroid and 60 mg Armour?

Ahmee is entirely correct to say that you need to insist on having FREE T3 done every time, since testing for Total T3 is obsolete and of little value.

[PiperAnne]

When I was on 2 grains I had major heart palpitations and my resting heart rate was in the high 80's. But it took awhile for me to realize it, I think I was used to my heart pounding. I have the last 4 tests, and I'm going to post them, it's mind boggling. I appreciate you looking at my numbers, thank you.

On Armour 60mg Unithroid 50mcg.          On Armour 90 mg Uni 50mcg
8/15/12                                                        10/17/12
TSH.     1.7 (.3-3.0)                                     TSH .56    (.3-3.0)
free T4  .66 (.6-1.66).                              Free t4  .8     (.6-1.6)
Total T3  62 (90-178)                               Total T3  67.   (90-178)    

On Armour 120 Uni 50mcg.                   On Armour 120 Uni 25mcg
2/14/13.                                                   10/3/13
TSH       .013. (.3-3.0).                            TSH undetectable
Free T4  1.16  (.93-1.7)                           FreeT4 1.15  (.93-1.7)
Total T3   117   (90-178)                          Free T3  4.2   (2.4-4.8)

For that lab test on Oct 2013 I had taken my meds 3 hours earlier, so it's not consistent with the other no medicated tests.  And I posted my last labs, and as you say I am very hypo.

[ahmee]

I think you should go back as well. However, 90 mg Armour is only 57 mcg T4, 13.5 mcg T3. That's not exactly "going back", that's going down.

The most important thing is, how were you feeling on the 2 grains Armour + 25mcg T4? And do you have any lab results from that time that you can post to compare to these last set of results? We want to be able to compare the levels of T3 and T4 in your blood as your dose changed. You said your TSH was low but as stated above, TSH is very often suppressed below "normal" levels when taking a med with T3 in it (ie, Armour). Thus it becomes irrelevant, and we need to reply on the actual hormone levels to gain insight into your situation. The lab results you posted at the top indicate you are quite hypothyroid at the moment.

The Armour + synthetic T4 is really not a strange combination at all. Simply put, the ratio of T3 to T4 is too high for some people, and those folks can use the extra T4 in the form of synthetic to bring them to the right levels. However, it is unclear if you were at the right level at all when you were on the Armour + Unithroid.

[PiperAnne]

Sorry ahmee, your name autocorrected incorrectly. I apologize.