Ugh- Still Undermedicated (and you guys called it)

[thyroidmom84]

So I have been feeling crappy for the last few months- headaches have come back, extra anxious, muscle cramps and most recently hives (yay, a new symptom). So I had been euthyroid for about 8 months and then I had bloodwork in September and it showed the following:

TSH 5.470 (range 0.450 - 4.500)

T4 Free Direct 1.58 (range 0.82 - 1.77)

Well my endo decides based on these results to increase my levo by only 56 mcg/week (I am on 112 mcg and she told me to take an extra half on Sundays only). Greygoose commented about how ridiculous this was but I didn’t know that at the time. So I was due to have my labs rechecked and I actually got her to change the orders to include Ferritin, Folate, Vitamin D and B12 and T3. She told me she sent the revised order to LabCorp but of course, they used the old orders so I only have new TSH and T4 to report (very frustrating, I should have asked them when I got there). Anyway here they are from yesterday:

TSH 5.060 (range 0.450 - 4.500)

T4 Free Direct 1.48 (range 0.82 - 1.77)

So I guess I am posting to get advice as to where to go from here. Obviously we need a real levo boost, but I also wanted to have a T3 conversation and guess that will need to wait now.

Quick Update: Just heard from her regarding the results, she is now bumping me up from 112 mcg to 137 mcg daily- which I have learned from you guys is the recommended increase for such a situation. Frustrated this was not done initially!

Thank you all in advance for any insight.

[Lalatoot]

Yes T3 will need to wait. You need to get your tsh down to 1 or lower and then get TSH, FT4 and FT3 measured in the same draw. Then we can compare your levels for conversion comments.

All is not lost though. In the meantime you need to get those vitamin levels checked and start supplementing where necessary. You need high in range vitamin levels for T3 meds.

Also be aware that T3 is not a magic wand. Like any change in meds, it messes with your hormone levels and can take some getting used to and some adjustments to find a happy level.

If you can find a good place on levo alone that would be so much simpler.

[thyroidmom84 in reply to Lalatoot]

Such great advice with a lot of info I didn’t know. I am genuinely hoping that an increase in T4 will do the trick but I have still been symptomatic when euthyroid so that is why I was considering T3. I will say, I definitely felt much better than I do right now. I know everyone’s sensitivities are different but I am surprised too feel so blah at only 5.

[SlowDragon Administrator]

If your endo seriously thought such a minuscule dose increase was going to lower TSH ....it's probably time to find a new doctor

Likely your vitamin levels are low too. So getting these tested and improving by supplementing too

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

[thyroidmom84 in reply to SlowDragon]

Amen to the new endo. I think we are switching insurance companies at work effective January 1st so once I know who the new company is, you had better believe I will be doctor shopping. So I am now adding an update to the original post- just got a reply from her regarding my new message and she is doing the 25 mcg daily increase so I am going from 112 mcg to 137. Very confused as to why this wasn’t done initially.

[Lalatoot in reply to thyroidmom84]

It wasn't done because that is the way some medics are. They will go along with their ideas but when you challenge them they back off a bit. I spoon feed the doctors with the arguments they should be using. But at 63 I have grey hair and seniority on my side.

[thyroidmom84 in reply to Lalatoot]

I love it! Is there any reason you can think of why she would have done such a slight initial increase? I am thinking of just flat out asking her because now I’m curious.

[Lalatoot in reply to thyroidmom84]

I can think of lots of words to describe what she was about but I might get in trouble if I print them here...***@!!@***

[LAHs]

You might want to consider having your own blood tests privately. I see you are in the US so try T.rue Health Labs - there are others but that is the only one I use. You must be feeling pretty awful with a TSH of ~5, you should not have to feel awful until January. You need to drag down that TSH asap. You can get a complete thyroid panel but that's a bit expensive, just get a TSH, FT4 and FT3 to begin with - (and another doc.) That 56mcg increase tells me she doesn't really know what she is doing, the following increase to 137mcg tells me that she had a conversation with a colleague. That's a step in the right direction but you need better direction than that. A TSH of ~5 is screaming hypothyroidism. For what this is worth, I would be in a coma with a TSH of 5 (my TSH is about .005 and I feel great).

[thyroidmom84 in reply to LAHs]

I totally agree about my endo’s poor dosing. And it’s good to know that I’m not unusual for feeling so bad at 5. You might not believe it but I was first diagnosed at a TSH of 17 and during my initial weeks of treatment my tsh got in the 140s!