Increased My Meds 1 day out of each week?

[nejzx]

This is really confusing. I currently take 50mg daily of levothyroxine. My recent blood work was marked high, 5.75. So my doctor's office called with new instructions. I am to take the 50mg everyday, except on Sundays I am to take 100mg. Then in 6 weeks, I am to return for blood work.

Is this a normal way to dose and keep the numbers level?

Thanks, :)
N

[goolarra]

That sounds like a plan.  If you don't feel better in 6 weeks, sit down with her and have a chat.  You have a chronic condition that most likely is going to be with you for the rest of your life, so seeking out a specialist to manage it shouldn't be an affront to your PCP.  

Let me know how it goes...

[nejzx]

Well, she's rather believe my symptoms come from mild anxiety and everyday stresses, not the thyroid. The tiredness is fairly acute for me. Up in the morning, I fall asleep by 6PM every night. I'm in bed by 10PM as well. I gain weight and can't get it off as soon as the thyroid is an issue. More down days, which isn't normal for me. But I'm also having 3 periods a month and if the GYN rules out other issues, it could be the thyroid.

I'm pretty sure I need a referral from her. But I'm going to see how it goes in the next 6 weeks and if I still don't feel well, I will talk to her more. If she's unwilling, I'll see about a specialist.

I appreciate all your help :)

[goolarra]

I know that finding a good PCP isn't easy...you ought to try it in a town of 1,700!  

It will be interesting to see what your recent increase does to your symptoms.  Is your doctor amenable to treating by symptoms?  If the current increase isn't enough to relieve them, would she increase more, even if your TSH was then below 5.0?  Perhaps you can work with her.  It's interesting that she thought there was "not enough evidence" to change TSH reference range, but the AACE, with all its members, did.  My lab uses the older range as well, but my endo knows better.  At my last appointment, he said, "I advocate for the change to 0.3-3.0 every day."  I said, "Me, too."

Good luck with your increase.  I hope it relieves your symptoms.  If it doesn't (it's a very modest increase), I'd sit down and talk to her about that.  What's important is if she can keep you feeling good.  If she can't or won't because she treats by TSH alone, then don't hesitate to ask for a referral (are you sure you need one?).  There's no reason why you can't keep seeing her for everything else.

[nejzx]

No, this would be my second increase in all these years. I wasn't medication until 2007 and given a very low dose. I did fine on that until 2009 and so the dose went up to 50mg daily.

I have discussed with my doctor the older lab charts. There is apparently not enough evidence that changing the numbers is beneficial. So my hospital will not do it.

It is VERY difficult to find primary care doctors that know what they are doing, so I won't risk leaving my doctor. For my other medical needs, she does a fine job. Like I said, it's a hard place to be in as a patient. I think they are treating me as only 'mildly hypo', according to the TSH numbers. If they have tested T3 and Free T4, I wouldn't know by the results I can see. I will have to look closer at the lab slip when I have to go back for blood work.

I'm not sure she would sign a referral form for a thyroid specialist.

[flyingfool]

I would recommend you demand getting FREE (not "total") T3 and Free T4 tested. If the Dr. refuses find a new Dr!

It is almost impossible to accurately adjust medicine dosage based on TSH alone.  TSH is at best a screening tool.  Beyond that it is of very little relevance.

Unfortunately the common "standard of care" is to test TSH only.  I say unfortunately because that standard practice is commonly keeping people under medicated or untreated and feeling ill for no reason other than medical industry ignorance about Thyroid treatment.

[goolarra]

I have no idea what the significance of the "T1-" and "T2-" is at the beginning of the lines, but these are TSH tests only.

About 10 years ago, the American Academy of Clinical Endocrinologists (a prestigious group) recommended that TSH range be change to 0.3-3.0.  It was 0.5-5.0 prior to that.  Many labs and doctors have been slow to adopt the new range.  You lab uses the old range since only results above 5.0 are flagged as "high".  

Good thyroid doctors use the new range, and good thyroid doctors order FT3 and FT4 every time labs are ordered.  A good thyroid doctor will also determine if your hypo is caused by Hashi's.

Is this the first time you've had an increase in all these years?

[nejzx]

Here's what it looks like:
Group Name TSH
Normal Range 0.40-5.00
Name
Date
Result
T2-TSH 02/10/2012 5.75 (High)
T1-TSH 09/15/2011 4.80
T2-TSH 07/07/2011 4.78
T1-TSH 01/20/2011 3.38
T2-TSH 07/15/2010 2.45
T2-TSH 04/09/2010 2.72
T2-TSH 12/14/2009 6.12 (High)
T2-TSH 07/16/2008 2.71
T2-TSH 01/07/2008 2.75
T1-TSH 08/03/2007 5.15 (High)
T1-TSH 12/14/2006 4.02
T1-TSH 04/13/2005 3.64
T1-TSH 07/10/2003 3.99
T1-TSH 04/24/2002 3.84
T1-TSH 08/21/2001 3.20
T1-TSH 04/25/2001 4.26
T1-TSH 12/18/1999 3.93
T1-TSH 12/14/1998 2.88
T1-TSH 08/05/1998 2.56
T1-TSH 03/20/1997 3.67
T1-TSH 01/22/1997 5.50 (High)
TSH 09/26/1996 4.5
T1-TSH 05/10/1996 3.20
T2-TSH 02/01/1996 2.30
T2-TSH 12/08/1995 2.45
Thyroid Stimulating Hormone 09/25/1995 0.96
T1-TSH 07/19/1995 0.01 (Low)
T1-TSH 07/15/1993 2.80
Thyroid Stimulating Hormone 12/19/1991 1.34

[goolarra]

We hear of lots of doctors, some of them with stellar credentials, who are still not good thyroid doctors.  I appreciate, however, that it might be difficult to question her.  

Can you post your recent TSH history?  

Do you see "thyroxine" or "free thyroxine" on your lab report or any footnote that might tell what "T1" and "T2" indicate?  FT3 could also say "free triiodinine".

[nejzx]

Yes, the TSH has been rising. When I view the online lab results, it says either T1 or T2. I was diagnosed in 1995 as Hypo. I don't see anything with the FT's in the recent 2 years.

I go back in 6 weeks for blood work again. The doctor has never mentioned Hashi's. I've been with this doctor a very long time. She teaches at Harvard and follows the Mass General's guidelines. So it's difficult to suggest she is not diagnosing my thyroid correctly ... It's a tough place to be in.

[goolarra]

While there are thyroid hormones called "T2" and "T1", they are of very little importance and very rarely, if ever, tested for.  Did you mean that your TSH was rising a little every time you are tested?

It sounds like you are hypo and needed the increase.  When do you test again to evaluate this increase?  Do you have your current FT3 and FT4 levels?

Do you know if you have Hashi's?

[nejzx]

Hi and thank you for responding :)

They typically are testing the TSH T2 and T1. It apparently is the standard for the hospital I am seen at. They also use the older Lab levels.

I have been very tired and sluggish for the past few months. I've also gained weight as well. I had felt much better it seems when my level was closer to 3.0. The T2 has been gradually getting higher each time it's tested.

I think I will split it up as you suggested, on Sundays and Wednesdays. I am generally sensitive to medications so this would make the most sense.

Thanks so much for your help :)

[goolarra]

I should also have asked you if your doctor is testing FT3 and FT4 along with TSH.  It's FT3 and FT4 levels, much more than TSH, that should be used to determine meds changes.  

How are you feeling?

[goolarra]

It's not unusual to dose this way to achieve an "average " dose on  a weekly basis that the tablets do not come in.  In effect, you'll be on 57 mcg per day, and there is no tablet between 50 mcg and 62.5 (half a 125).  Your doctor probably wants to move slowly so you don't cross over into being hyper.

If you're not typically sensitive to meds in general or to thyroid meds increases, you should be fine with this.  If you're concerned, you could split your extra 50 mcg pill in two and take half on Sunday and half on Wednesday (or when you'll find it easiest to remember).