Glad to hear that you are doing better. Just to clarify, TSH does not cause symptoms. It's primary use is to distinguish between primary and central hypothyroidism. When already taking thyroid meds, TSH is basically a useless test. Further treatment should be based on increasing your Free T3 as necessary to relieve symptoms, while maintaining your Free T4 at the middle of its range or slightly above. So just ignore TSH.
Also, I suggest that you accept your doctor's offer to reduce your Synthroid and add 5 mcg of T3. Then see how you are feeling and re-test in about 4-5 weeks. The reason I suggest this approach is that it is much easier to adjust FT3 and FT4 independently. When trying to use Armour and Synthroid, as you can see the doctor's alternative offer of 125 T4 and 1 grain of Armour would have given you a total of 164 mcg of T4 and 9 mcg of T3.
Since it has been some time since any info on Vitamin D, B12 and ferritin, I urge you to get those tested at next opportunity. Deficiencies in either can cause some symptoms, and also can affect how thyroid hormone is metabolized.
I have some new some new labs and treatment options from a new doctor:
FT4 1.66 0.82 - 1.77 ng/dL
TSH 3.630 0.450 - 4.500 uIU/mL
FT3 3.5 2.0 - 4.4 pg/mL
This is from 6 weeks on 137mcgs Synthroid only. The new doctor has given me two options: 1) Drop to 125mcgs Synthroid and add 5mcgs Cytomel and increase as needed, OR 2) Drop to 125mcgs Synthroid and add 1 grain of Armour.
I'm inclined to try the Armour option, just because the Cytomel didn't seem to do much for me. BUT, I know you said it didn't work last time because it was never increased.
What are your thoughts in the above new info? I've definitely put on some weight with that TSH level being so high.
Reverse T3 is not normally a concern since the body produces it as part of the conversion of T4; however, for the occasional situation where the patient's body is over producing RT3, that can cause hypothyroid symptoms by blocking the effect of Free T3.
Tissue thyroid levels are what is really important and those can be affected by a number of things Sometimes serum thyroid levels can vary significantly from tissue thyroid levels. Since there are few relatively direct measures of tissue thyroid levels, other than Resting Metabolic Rate and basal body temperature, it has been suggested that the best way to measure tissue thyroid levels is the ratio of Free T3 to Reverse T3. So it was suggested that it would be a good idea for you to test and rule that in or out as a concern.
Yes, they refused to run RT3 because it's a "useless" test. I tried to argue, but to no avail.
I am feeling better, but still not great. I know it'll take time. At least I have a little energy to work out now. That's new. Curious to drop down to 125mcgs and see how that does for me. Curious thing is, that was my original dose! I may end up going full circle.
Wish that TSH stayed lower though.
Can't be sure about the FT3 result We'll know more after your next set of tests.
You're right, it is guesswork without a Reverse T3 test. Did they refuse to run that?
The most important thing at this point is that you are feeling better.
Do you think the FT3 result is a fluke? Also, should I be concerned about the higher TSH?
I had a theory too -- could it be that my I was producing too much RT3 because of the high level of synthetic T4 in my system? Then when I reduced the T4, my body responded by making regular T3 again? I mean, it's all guesswork at this point. Wasn't able to get the RT3 tested unfortunately.
I am a bit surprised at your new test results. Not sure I'm convinced that your latest Free T3 result is representative, but assuming it is, how would we explain it? I guess that one could make the case that your TSH went up, which could stimulate more natural thyroid hormone production, so your Free T4 didn't change much. The fact that your Free T3 actually went up could possibly be the effect of increased TSH on conversion of T4 to T3.
At any rate, I think you could consider reducing further to 125 and then give that about 4 weeks and see how you are feeling before testing again. Until your symptoms are relieved I would consider increasing Free T3 more. If that can be accomplished by the T4 reduction, fine. If not, then in 4 weeks when you get re-tested, you can again go after adding the Cytomel.
As I continue to search for a new doctor, my current doc did allow me to drop down from 150mcg Synthroid to 137mcgs. She didn't allow me to take Cytomel however. After 3.5 weeks on this new dose, I just received my new labs back:
FT4 1.72 0.82-1.77 ng/dL
TSH 3.390 0.450-4.500 uIU/mL
FT3 3.6 2.0-4.4 pg/mL
I know 3.5 weeks is a little fast to get labs done, but wow -- my FT3 really came up nicely! I don't think it's ever been that high in the range. TSH also came up a lot, but I understand that that test is less important once on replacement.
I also feel quite a bit better. Not great, but better. Puffiness has gone down some. I have more definition. My veins are popping out more. Obviously my dose was too high. I'm just not sure WHY my body is responding this way.
Now the question is, what do I do from here? Stay at 137mcgs for a bit longer and retest? Drop down to 125mcgs? Is Cytomel not called for now with the higher FT3?
Thoughts?
Okay, armed with this info I will get the necessary tests done and find a doctor who will work with me. Thank you again for helping me through this. I've felt so lost. Even my family is sick of me, and think it's all in my head. I appreciate the support and info, truly. I'll update as I have more info.
If it were me, before changing anything I would get those tests done. Also, I would ask the doctor to reduce the T4 to 125 and ask for a prescription for 10 mcg of T3, and start on only 5 mcg for the first couple of weeks before adding the second 5 mcg. Of course, always split any dose of T3 and take half in the morning and half in the early afternoon. After a total of about four weeks it would be good to re-test and see what your levels are, to help determine further changes.
Okay. I'm going to ask my next doctor to reduce my T4, and add back Cytomel, or add some Desiccated.
Would you recommend I ask to decrease Synthroid to 137 or 125? Also, what dose to start on T3?
Thanks!
Yes, your Free T4 is higher than necessary. That is why I'd like to see your T4 med reduced and some T3 med added. Also would like to see new test results for Free T3, Free T4, Reverse T3 and ferritin. Those results should give us lots more insight.
Thanks gimel! I received the info.
One interesting side note -- my T3 has never gone above around 3.3, but I've been able to lose weight in the past. I've also had symptom relief in the past with T3 usually around 3.2. I'm just confused why things changed now. Could it really be that my T4 could too high at 1.74?
Just sent PM with info. To access the info, click on your name and go to your personal page. Then click on messages.
Yes, I would be very interested in getting the names of some doctors, both in the LA area, as well as in Salt Lake City, if possible. Thanks!
I have the names of several doctors in your general area, that were recommended by thyroid patients. Interested?
I was worried I would need to find a new doctor. A good thyroid doctor is so hard to find! I've been through at least four already. The most frustrating thing is that I'll have to stay on the Synthroid 150s until I can get a new doc and go through the whole new patient process again. Could take months, and meanwhile, I feel like crap. I guess that's what we go through with this disorder.
Here's another random thing that happened yesterday -- my doctor said to give sublingual B12 a try. So I did, and I immediately got a crippling headache, which was unlike any headache I've ever had. I still have it, but it seems to have gotten a little better. I looked it up, and I guess B12 can cause bad headaches for some people. Lesson learned. Didn't sleep at all last night.
Let me just throw in here that you can order RT3 and FT3 from an online lab. It won't change the fact that you probably need a new doctor, but it would at least let you know what you're dealing with and give you a better idea how to proceed.
It didn't work for you last time because your Free T3 level did not increase. Your TSH went down, which would decrease endogenous T3 and T4 and also give you less T3 from conversion of T4, with the end result, a lower Free T4 level and no change in Free T3 level. Since scientific studies have shown Free T3 to correlate best with hypo symptoms, in my opinion you need to increase your Free T3 level. Also, are you going to be able to get the Reverse T3 tested, along with Free T3 and Free T4 from the same blood draw? Also ferritin, if you don't have any recent results on that.
In general you may not see the desired effect of thyroid med dosages on your total serum Free T3 and Free T4 level until TSH is significantly decreased/suppressed. Think of it this way. Serum T3 and T4 levels are the total of both endogenous and exogenous sources of T3 and T4. Endogenous T3 and T4 are affected by TSH level. Many hypo patients find that their total serum T3 and T4 levels don't start rising adequately until TSH is significantly decreased or suppressed, and exogenous doses of thyroid med are essentially the sole source of thyroid hormone. This is difficult for many doctors to accept, since they have the "Immaculate TSH Belief" and think that their objective should only be to get a patient's TSH result within the so-called "normal" range. Those doctors also think that a suppressed TSH assures that a patient is hyper. That is wrong, and there are scientific studies to support that There are also members here with contrary experience. But that is what doctors are taught in med school and they cling to their belief in TSH, for which they can provide no scientific proof, if you asked for it. The main value of TSH is only in initial screening, to help identify primary from central hypothyroidism. After starting on thyroid medication, it is basically a useless test. Treatment should be based on clinical signs and symptoms first, and Free T3 and Free T4 second.
You can tell your doctor that looking back on your results with the 5 mcg of Cytomel, you see that your Free T3 did not increase, and your Free T4 actually decreased, so obviously that small dose would have no beneficial effect on your symptoms. And then ask for an increase in the Cytomel.
I don't really have great expectations for you doing that. I fully expect that your doctor will not change her mind. So, I also expect that you are going to need to find a good thyroid doctor that will treat clinically.
Had an appointment with my doctor today, and received my latest lab results:
TSH 1.9 (0.450 - 4.500)
FT4 1.74 (0.82 - 1.77)
FT3 3.2 (2.0-4.4)
My TSH has come down, but the other numbers haven't really changed. Also had testosterone done, which was all in the normal range.
My doctor really liked these numbers, and doesn't want to change anything. Yet I still don't feel well. She says that it must not be my thyroid. I asked about lowering and adding T3 again, to which she responded, "Didn't work for you last time -- why would it work now?"
I'm so lost, I'm not sure what to think or do next.
Yes, that would be my approach. No need for your Free T4 to be that high.
The Cytomel did not help last time apparently because your Free T4 went down and your Free T3 stayed the same and you stayed that way for 3 months instead of continuing to increase your Cytomel dosage to move your Free T3 into the high end of the range.
Okay, but you definitely think I should discuss a decrease in T4 with my doctor? My appointment is tomorrow.
I'm not completely against trying Cytomel again, it's just that I already tried the Synthroid 125 and 5mcgs Cytomel combo for several months, and it didn't seem to help. Even if the weight gain was unrelated, it did coincide. Granted, I probably should have gone higher on the Cytomel.
I know you probably have an aversion to Cytomel after your experience, but I don't think it was the cause for that. The reason I bring it up is that it would be much easier, as the first step, to reduce your T4 med by 25 mcg and add 5 mcg of T3 (Cytomel or other), and re-test in about 4 weeks. Then you could determine if you needed to reduce your T4 further, which I expect, or if you just needed to increase your T3 med by 5 mcg again. The target of course is to reduce your T4 to around the middle of its range and gradually increase your Free T3 as necessary to relieve symptoms. As you approach the upper part of the range for Free T3, it is a good idea to take it slowly and establish some stability and give time for symptoms to respond. This is something you need to discuss with your doctor and come to agreement. By the way, since T3 goes into effect in the blood so much faster than T4, and peaks about 3-4 hours after taking the dose, it is generally best to split any T3 med and take half in the morning and half in the early afternoon.
I'll look for my B12 test results. Couldn't find them when I first looked.
I'm waiting to hear back from my doctor regarding my last test results, and what to do -- but it seems to me that lowering my Synthroid to around 125mcgs and adding in 1/4 grain of Armour might be a good move to discuss.