get YOUR doc to order the labs, that way your insurance pays for that part. Then one appt will reset your prescription levels and you can ask how oftent hey want to see you, etc. IMHO, 100-200 two or three times a year is better than killing yourself and/or feeling crappy self-medicating because your doctor isn't knowledgeable enough in this area. Also, once the other doc writes you a script for something, you can then (usually) get your insurance to cover the prescription and get your insurance doc to continue it.

(ok, so I'm probably exaggerating about the killing yourself part. )

one further thought - the not spiking your T3 thing is probably totally over-ridden by taking as much as you are taking. The amount you're on will make it so your T3 is *always* spiked.

I believe Nat has said that the T3-osteoporosis link has been disproven. Perhaps she'll say more when she gets here.

Rachel, I don't know where to begin.


I don't know where you read that, but it's just not true, Rachel. Yes, it metabolises quickly, but when you take in any exogenous hormone its taken in as a FREE hormone, it takes a good 8 hours for the binding proteins to gobble it up. So you want to test after 8 hours because you want to know how much is not being bound, after binding would happen. This is your body's way of showing you how much it thinks it needs. In your case it was getting FAR too much. I thought your dose was high when you initally posted it, but I assumed that was the doctor's doing.


Large amounts of T3, period, are bad - they are akin to being hyper, which we know is just as unhealthy as being hypo. This 3 hours later rule is very inacurate. T3 has a half life of 48 hours, which means 48 hours after you take it 1/2 of it will still be in your system, and 48 hours after that 1/2 of that will be in your system, and so on. While it degrades faster than T4, it's still going to be there in pretty big amounts. You were adding in more after 3 hours, your FTs would have been sky high. That FT3 reading isn't a 'real' reading, it's not THAT high, but it's high.


I agree. The ratio of T4:T3 in a functioning thyroid gland is 80:20, 80% is T4 and 20% is T3, or there abouts. If you're taking 112mcgs of levoxyl, then you'd be on no more than 22mcgs of T3. Even that might be too much. I suspect that some of your hypot symptoms are really hyper symptoms.

Here's a list of hyper symptoms:
Palpitations
Heat intolerance
Nervousness
Insomnia
Breathlessness
Increased bowel movements
Light or absent menstrual periods
Fatigue

Here's a list of hyper signs:
Fast heart rate
Trembling hands
Weight loss
Muscle weakness
Warm moist skin
Hair loss
Staring gaze


Higher doses are usually warranted with cancer, you want the TSH supressed, but other than that the amount of T3 is based on your individual needs. Some do well with just 5mcgs, other need 25mcgs.


Not everyone feels the lag of energy taking their T3 once a day, I don't think you can just cut the T3 out completely - I would taper it off slowly. Omit two of your doses and split the other one, so you're getting 12.5mcgs 1x a day. And of course, get in to see another doctor ASAP. You need to wait at least 10 days on a much lower dose and have your labs run again, and this time no meds w/in 8 hours of your blood draw.


You can buy a pill splitter at Wal-mart for 4$, it does a very good job of splitting into quarters, Rachel. I'd go out and get one right now!


No, it takes a full 10 days before it's all gone. Usually 7-8 half lives.

Re osteoporosis, it's an issue if you're undermedicated and overmedicated, but it's correctable by fixing the dose. Too much thyroid is just as dangerous in the long term as too little. You're not 'killing' yourself, but you are jeopardizing your health, and you might be making some of these "hypoT" symptoms worse with this high level of T3; your body just can't handle it.

Ha-ha...some days I do feel as if I'm slowly dying. My doc says I'll probably never be back to normal again and I just need to accept that. That is NOT acceptable to me. I remember when they talked me into RAI and spoke of the benefits over taking PTU. They made it seem so easy and once I swallow the pill all will be well..I am frusterated cuz now that I've done that I am no longer myself and they do not seem to care. You girls have given me some hope that I will be back to myself again.

I suspect the high T3 is why you're also losing weight like you are. It's a very common hyper symptom, Rachel

Nat,
Thanks for clearing things up regarding T3 and testing. I guess I will continue with my T3...taking 12.5 once a day...and see what happens. I am going to call the Doc that Friday recommended. I am getting tired of self-medicating but in the process I've learned alot about Thyroid Disease. At the start of all this I knew pretty much nothing and blindly trusted my doctors. I stupidly thought that thyroid was "no big deal" and was easily corrected. Well now I have learned my lesson. Do the reasearch berforehand!

Good news, Rachel - I was more than a little worried about you

I was losing the weight long before T3 came into play. I was losing alot when my TSH was 11.7, more than 6 months ago. I weigh a little more than I did back then and I didnt lose anything while taking T3..another reason I didnt realize the dose was too high.

Also..I already use a pill splitter but just cutting the pills in half is a chore. Sometimes they crumble a bit and I lose small amounts of the pill (crumbs). I'll try to split into 4's but I figure I'll lose even more of the pill...not that that would be such a bad thing at this point.

With the pill splitter, don't crush the blade all the way through the pill. Try applying slow, even, firm pressure just until it breaks on its own. This reduces the crumbling.

Rachel, are you on any medications like Prednisone? I know that one is horrible for making faces swell.

Friday, thanks for the tip...I will try that.

Nancy, the only medication I'm on other than thyroid meds is Norco (a pain pill). The swelling started long before I began taking it. I did try Prednisone for eye problems following RAI but it was only for one week and that was almost 2 years ago. The swelling actually was minimal until 1 year ago when I increased Levothroid from 50 to 75. Four days after the increase my face really swelled up. Originally I had thought I was allergic to the Levothroid and tried taking dye free pills...no difference. Then I tried Armour (an extremely small dose) but the swelling has never left. It was definately a reaction to the increase in meds. I read that 75 Levothroid is a small dose for most people but it is just enough to bring down the TSH to "normal" levels. If the dose reduces TSH but is not enough no compensate for the thyroid glands reduced release of T4 and T3, metabolism slows further. This can actually lead to worse symptoms of HYPO after increasing T4. The dose may be enough to bring TSH down but at the cellular level it is not enough to relieve symptoms. I think this would not apply however if one does not have a functioning thyroid. This is why I wondered if my thyroid may still be functioning after RAI...my fluid retention and facial swelling was definately caused by the increase in Levothroid. I remained on that dose for 6 months all the while getting worse. During that time my TSH results were 3.1, 1.3, .9, and 4.2. If my thyroid is completely gone then I am thinking I may not be converting well

You might be having a reaction not to the dyes but to the fillers / binders in the levothroid, Rachel. You'd still feel the effects because it stays in your system for a while. You might find you do better on Unithroid, which is more hypoalergenic. It might be worth a shot.

Nat

Thanks Nat. I've never heard of that brand but I'll ask my doc about it. Swelling aside I know that 75 was too low for me even though the labs were normal. I was feeling miserable on that dose and would'nt have been able to even chat on this forum. I was completely unable to retain info and my memory was horrible...I had brain fog. Since my doc was not willing to increase I thought I'd go back to 50 since I felt better while on that dose. It didnt work obviously and I just got more tired..my TSH was 11.7 in Oct. Since then I've slowly increased to where I'm at now. I dont have brain fog anymore and the T3 seems to have lifted my depression, which Prozac did not do. If I was having a reaction to the fillers/binders wouldn't I have experienced the swelling prior to going on 75? After RAI I was started on 75 levoxl, then increased to .1 Levothroid, went hyper, new doctor then put me on 25 (which I think was a huge mistake on her part), then 50 and at 75 I swelled up. wouldn't the fillers/bindres ben the same for all doses though?

When you say 75 levoxyl, do you mean a generic? Did you switch brands from levoxyl to levothyroid?

There might be a 'dose' wherein you feel the effects more, it might not be a reaction - but switching to something hypoalergenic might make a difference.

You might also do better on natural desiccatd thyroid like Armour or Naturthryoid (another hypoallergenic one), esepcially since you've had your own thyroid nuked.