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Normal increments for dose increases?

Sorry for posting so much here lately.. you all have just been very helpful so far. My dose was lowered down to 25 mcg of levo. because of low TSH (free t4 was still low and had no hyper symptoms, but that just what happened, and I was clueless then about lab interpretation). Well big surprise.. my TSH jumped up again to 6.77 so doctor increased to 37.5 mcg. Dr didn't want to go up to 50 because the TSH level when I had been on 50 was in the hyper range. After 37.5 mcg for 6 weeks, dr left a message for me today that my TSH is now 6.7. So virtually no imrovement from his perspective. Don't know the free T4, but will get a copy of the lab tomorrow. He increased my dose now to 50 mcg. and wants to see me in 6 weeks to "discuss all of this". My doses have been too low all along - even when TSH showed hyper, I was still very hypothyroid, so I'm very anxious to get the dose increased. 12.5 mcg seems so tiny though and I have to wait 6 more weeks.

I know I am very impatient, but the last increase was so small, I was having to cut pills in half to get the dose because they didn't even manufacture it at that amount! Is this normal? I am so tempted to take more than I was prescribed so I can feel better - I've accumulated a lot of extra pills from all the dose changes. I know that will just screw up the lab. I did "treat" myself yesterday morning after my blood test and take a whole pill instead of a half. It's hard to have access to medicine that will make me feel better, but not be allowed to take very much of it!! Grrr!!! >=(

Also, I think I'm now at the dose where I'm experiencing hypo symptoms still, but my mind is clear and quick enough to be very bothered and self-conscious of it. At 25 mcg I was late everywhere I went and oversleeping, gaining weight, and not very attuned to social cues and graces but I was too dazed and depressed to really care what anyone thought. I am so disconnected from people in general because of the personality changes and tiredness. I feel very lonely watching the world go on, and feeling like I'm not part of it. I havne't really socialized outside of family holidays since this summer. Outside of one close friend at work and my husband, my friends and family don't know about my thyroid problems. I like to keep health matters private, but I also feel like I owe everyone an explanation. Does this make any sense to anyone?  Sorry for rambling..
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Avatar universal
Isn't it amazing how much you have to fight for yourself!  What do people who don't have the capacity, the health or the youth do?  

I'm so happy to hear you got it cleared up and got your increase.  
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Avatar universal
Another update.. my husband called the dr's nurse yesterday and wanted to know what was going on. She said 1/2 a pill was wrong and I am to take a WHOLE pill!!!!! So dose IS being raised like I thought it was!
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Avatar universal
Don't just check with the pharmacy, call the doctor to make sure an error wasn't made when they entered the script.  Something's definitely awry.  You need an increase, and I'm betting an error was made.

Recently, I picked up a script for my husband.  The doctor had ordered 750 mg of an antibiotic to be taken three times a day for 10 days (30 pills, total).  The pharmacy had replaced the 750mg pills with a generic that only came in 250 mg pills, so he had to take 3 of those 3 times a day (3 pills X 3 times a day X 10 days = 90 pills).  When I picked up the script, they couldn't fill it all because they didn't have 270 pills.  Wait, does not compute!  However, I was in a hurry and didn't argue as long as I should have.  However, when I got home, I did the math and said "what?".  I called the pharmacy...nope they were right, 3 pills, three times a day for 30 days, that's 270.  Wait, 30 days?  No, no, no, that;'s not what the doctor had said.  I called the doctor, and it seems she'd put the "30" in the number of days field rather than in the total number of pills field.

Call the doctor, and don't get off the phone until they resolve this for you.  In your original post, your said this, "He increased my dose now to 50 mcg. and wants to see me in 6 weeks to "discuss all of this".  Somebody's made a mistake...  
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Avatar universal
The pharmacy confirmed that dr called in for a 60 day prescription which contained 30 pills. Half a 50 mcg pill to be taken once a day with water 1 hr before morning food. That's also what is stated on the bottle.

I feel a portion of my "symptoms" are from the depression and helplessness over thyroid treatment. I am committed to having a more positive attitude and trying to focus my life back on work and my husband instead of centering around my health problems like it has the past several months. I know this isn't going to fix the problem, but I've just given up on understand anything that's going on.
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Avatar universal
You are right.  A high TSH means you are Hypo and a very low TSH might indicate Hyper.

You should be confused with the lowering of the dosage. Even using such an unreliable indicator as TSH, you are so high with a TSH over 6 that you are VERY Hypo and need medicine.  Going from 6.67 to 6.6 is actually no change at all! variability in testing and testing tolerance is more than 0.07 accuracy.  And with it remaining over 3 would be indicative of being quite severely Hypo and in need of INCREASED dosage, not deceased.

Also you are so low, in fact I believe BELOW the bottom of the FT4 range that it is no wonder you feel like crap.  Another indication that you desperately need MORE T4

It makes no sense what so ever to have lowered your dosage.  Are you sure you are supposed to be half a 50 mc pill just once a day?  Or are you supposed to cut the 50 mcg pill and take it twice a day for the total 50mcg?  Or even take the 50 mcg pill twice a day?

Splitting T4 med and taking in two doses is almost useless due to the long half life of T4 in your system.

The reason why you may want to split a T4 medication is to save money.  Especially if you have a co-pay. Why pay say a $20 co-pay for 50 pills of the 25 mcg pills (50 doses), when you could pay the same $20 to get 100 doses by cutting a 50 mcg pill in half.

Also you really need to be tested for your Free T3 (FT3).

My opinion is that you needed to at least be increased from the 75mcg to 100 mcg.
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Avatar universal
Bad news.. the prescription is actually for HALF of a 50 mcg pill.. so my dose has be lowered. I am confused.. at the Nov lab (midday, not fasting, and had taken AM dose), TSH was 6.67 and free T4 was .66 so my dose was changed to 37.5 mcg. My lab this week (8am, fasting, no AM dose yet) showed TSH of 6.60 and free T4 of .67 and my dose was lowered to 25 mcg. If my dose was raised based on my last lab, and there was an improvement (am I mistaken that TSH needed to go down and ft4 needed to go up?) then why is it being lowered? Is he calculating an adjustment of the lab values because of the fact one lab was fasting and one wasn't?

I was under the impression my dose was being increased, which actually helped my symptoms for a day or two simply because of the optimism I had at potentially feeling better. When I left the pharmacy after having them confirm the dose, I burst into tears. I would rather not take any pills at all than take the 25s because that dose made me feel awful last time and I felt that it "tricked" my pituitary and thryoid glands to make WAY less hormones. I also don't get why I'm to cut a 50 in half instead of taking a whole 25 pill. Does cutting it in half cause some sort of benefit or alteration to the absorption or side effects experienced? Probably I'm not making any sense. I'm just utterly lost and confused. My husband is calling the doctor to discuss the treatment plan/goals/philosophy. I just can't deal with this or my life at all anymore. :(
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Avatar universal
Yes, when I took a whole pill yesterday it was 75mcg. I will stick to my prescribed amount (now 50 mcg) until my next lab so as to not mess things up.

My starting dose was 75 mcg - which the pharmacist commented on was somewhat high when I got it filled. My fasting blood sugar was consistently in the diabetic range, which my doctor thought was probably caused by low thyroid, so I think he wanted to start on a theraputic dose right away.  I am suspecting that may have "surprised" my TSH and made it just shut off for a couple months. I had also taken my morning dose the morning of my lab after being on the 75mcg, and then again on 50 mcg (which also showed a hyper TSH). I no longer take it before getting a lab, and my TSH has shown "hypo" values at every lab since then.

I am hoping to just make things work with this doctor for the time being as I said above. If he wants to dose based on TSH (which I PROMISE I will have a discussion with him about! lol) then I kind of just want to "play along" to get my necessary pills, and then move to greener pastures when possible.
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Avatar universal
Thanks! I am in Knoxville currently but moving to Nashville in several months. I have located a good thyroid doctor here. Trouble is, she's way across town and I am a CPA just getting into spring tax season so I am hesitant to start seeing her and then needed blood tests regularly since I am not allowed (or really able) to take time out of work until mid-April. My current dr is literally accross the street from my office, so getting a blood test takes all of 15 mins. He is a good doctor who listens to me, but clearly not experienced in thyroid issues. For now, I'm just happy my dose was increased. I have gathered some materials from very helpful members on here, plus via my own research, so during my appt in 6 weeks I will discuss with him my treatment approach and ask if it can be changed. It's very likely he will be on board, but also just as likely he will attribute my remaining symptoms to "clinical depression" or "bipolar" or whatever the trendy mental illness is right now as he did prior to be being diagnosed last year. Because dose changes take SO long to take effect and get re-tested, I'm thinking as long as I can keep moving in a positive direction (more synthroid) I will stick with him at least through tax season and possibly until I relocate to Nashville. I'm not sure any other doctor would be faster, but I'm just surprised at how tiny the dose increases are!! Especially since the last increase of the same amount did virtually no improvement (labs and symptoms both the same).
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Avatar universal
I know it takes a lot of patience, but I really think your doctor is doing the right thing by raising your dose slowly.  If you raise it too fast, you could 1) really become hyper, which is not fun or 2) your TSH could hit the dirt again, prompting your doctor to think you're hyper and to want to start lowering your dose again.

The rule of thumb for increases is 12.-5 to 25 mcg per change.  Retest and reevaluate symptoms after six weeks, adjust dose, repeat until you get it right!

37.5 to 75 is a HUGE increase (that IS what you meant by a whole pill, isn't it?).  It's doubling.  It's not going to hurt you to have done it for one day, but I don't think you want to do all that in one jump.  
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Avatar universal
You need a good thyroid doctor.  by that I mean one that will treat you clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not test results. Test results are valuable mainly during early diagnosis and afterward to track Free T3 and Free T4 as meds are revised toward symptom relief.  If you haven't read this before, you can get some good insight from this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance.  The letter is sent to the PCP of the patient to help guide treatment.

http://hormonerestoration.com/files/ThyroidPMD.pdf

What part of Tennessee are you in?  I ask only because I have been gathering a list of member recommended thyroid doctors and if lucky there could be one in your area.

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Avatar universal
Also, why do I feel ashamed like I'm some kind of drug seeker?? Synthroid doesn't make me high or anything - it just makes me less bad.
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