Levothyroxine and chronic chapped lips/sinus problems?

[Rohai]

I have been taking Levothyroxine for my hypothyroidism for about 6 years now, usually having my dosage adjusted based on bloodwork every 3 to 6 months. For the first several years of treatment, my daily dosage of Levothyroxine seemed to steadily ramp up - I think at one point I was up to 250mcg a day.

However, the past two visits to get bloodwork done, the doctors have informed me that they are lowering my dosage but a substantial amount. I just had my prescription changed from 150mcg to 100mcg.

Around the same time the doctors noticed that I needed to cut back on my medication intake (about 4 months ago), I also noticed that I was having issues with chronic chapped lips and sinus congestion. I've been to an ENT, allergist and a dermatologist, all who seemed baffled by these ongoing symptoms. No matter how I try to treat my chapped lips or my congestion, there's been no change in my symptoms.

Considering the past few months have been the first time in my treatment that I've had my medication dosage lowered, is it possible that these symptoms are a reaction to having too much of the levothyroxine in my system?

[gimel]

I would guess that your doctor is changing your meds based on the FT4 level being above the range.  I agree with that.  In fact I went through much the same thing some time ago.  My FT4 was above range, but my FT3 was low in the range, and I still had hypo symptoms.  This unbalanced condition needs to be addressed by adding a source of T3 to your meds, while reducing your T4 only type med.  This can be achieved by adding either a T4/T3 combo type such as one of the natural, dessicated meds, or a synthetic T4/T3 such as Thyrolar.  Another option is to supplement your meds with a T3 only type med such as Cytomel.

The important thing is to start moving your FT3 toward the upper part of its range and slowly and carefully  keep adjusting FT3 and FT4 levels until symptoms are alleviated.

For myself, I went from 210 mcg of Synthroid daily to currently 100 mcg of Synthroid and i grain of Armour thyroid.  My FT3 is now 3.5 (range of 2.3 - 4.2)and my FT4 is 1.05 (range of .60 - 1.5).  I am still making minor adjustments, but already I feel the best ever.

[Rohai]

I received back info about my first FT3/FT4 test in over a month. I'm still trying to understand all the results, but this is what the lab worker informed me over the phone..

FT3 - 114 (Range 76 - 181)
FT4 - 2.2 (Range 0.8 - 1.8)

Am I interpreting it correctly in that is seems that my T3 is low and my T4 is high? Isn't that generally a bad thing when the correlation between the two results is inversely related?

My Doctor still wanted to move forward with decreasing my daily intake from 150 to 100mcg per day. I guess I'm most confused understanding how this is determined from my results? And I'm still unsure if reducing my meds is a step in the right direction??

[gimel]

TSH is inadequate as a diagnostic by which to determine medication.   TSH is a pituitary hormone that is affected by many variables, including the time of day when blood is drawn for the test.  Also, TSH does not correlate with hypo symptoms.  At best TSH is an indicator to be considered along with more important indicators, which are symptoms and the actual, biologically active thyroid hormones, free T3 and free T4.  

Along with thyroid antibodies tests to determine cause for hypothyroidism, FT3 and FT4 are most important tests.   FT3 is four times as active as FT4 and FT3 also correlates best with hypo symptoms.  So from this it is easy to conclude that the best way to treat a thyroid patient is to continually test and adjust FT3 and FT4 levels with whatever medication is required to alleviate symptoms, without being constrained by resultant TSH levels.  Frequently this requires that FT3 has to be increased into the upper part of its range and FT4 to at least midpoint of its range, in order to fully alleviate symptoms.  
If your doctor doesn't understand why FT3 and FT4 needs to be in the upper part of their ranges, tell him that their reference ranges have never been adjusted like was done for TSH, when suspect hypo and hyper patients' data was removed from the data base, and the ref. range shifted from .5 - 5.0 down to .3 - 3.0.  From my background in statistical analysis, I think similarly purging the data base would shift the ranges for FT3 would change from 2.3 - 4.2pg/ml up to 3.2 - 4.3, and for FT4 the range would shift from .60 - 1.50ng/dl up to 1.0 - 1.55.  In my opinion this is why we hear from so many patients with FT3 and FT4 within the low end of their ranges, yet they still have hypo symptoms.

Frequently when on thyroid meds, the TSH will be suppressed in order to alleviate symptoms.  Many patient's doctors want to reduce meds when they see TSH in the low end of the range or below, on the theory that means you are hyper.  How can you be hyper without hyper symptoms?  Actually you still have hypo symptoms.  

The most difficult part of getting treated effectively,  is finding a doctor that that will treat your symptoms in the above manner.  If you have no luck getting your current doctor to discuss and understand the above and treat your symptoms, then you will have to join the multitude of patients looking for a good thyroid doctor.

[Rohai]

Thanks for your comments. I was actually given radioactive iodine treatment back in 2004 - so I've been treating my hypothyroidism for about 6 years.  I did check back with my physician regarding my past lab results to see exactly which tests they were running, and it turns out that they have only been testing my TSH for a year and a half and NOT my T3/T4.

I went in this morning for some bloodwork test on my free T3/T4, hoping that the results from this test could possibly shed some light on these on going symptoms. As I mentioned in my initial post, the doctors have reduced my daily intake of levothyroxine over the past 6 months from 200mcg to 150mcg and now to 100mcg.

Is it possible that based on my T3/T4 results that I could find that the doctors decision to lower my medication based on my TSH levels alone was actually a step in the wrong direction??

I never really realized the harm in prescribing medication based on TSH readings alone, but reading through these forums has opened my eyes a bit and educated me that much more about my condition.

[gimel]

Your problems originated with Hashi's, but lately I think it is more associated with improper treatment.  First thing you need is to have your FT3 and FT4 levels checked.  Then you need to get the doctor to continue to test and adjust FT3 and FT4 levels with whatever meds are required to alleviate symptoms, without being constrained by TSH level.  Frequently this requires that the FT3 level is increased into the upper part of its range and FT4 to at least midpoint.  This will have to be done very gradually, since you mentioned tachycardia; however that problem can sometimes be associated with hypothyroidism  and also sometimes if your  medication is increased too quickly.  You are the one that will have to make those calls, just don't let the doctor rely only on TSH level. Slow and steady is best.

[Katfalls]

yes, in 1992. Had a goiter and very large nodule. Had it removed, now have another large nodule on the side that's left.

[gimel]

You mentioned Hashi's.  Were you also diagnosed with that?

[Katfalls]

I agree with you, however, the doctors I have had, my pcp and ent only test the TSH.
My tsh was .14 (.34 to 4.82). Since the dosage was lowered I could tell a difference in two days! the heart rate has calmed right down, feels even normal, although I had a bad four days after the thyroid needle biopsy. Of course, the ENT guy said the biopsy would not cause the hyper heart arrhythmia, but I know my body. So, I am looking for a new Dr. now to do the other tests, am considering going to a nurse practitioner I have heard about who can then refer me to who I need to see. I'm working on it!
I can't believe all the problems that Hashi's can cause, I dread going to the Dr. because everything I tell them they say it's just stress. Hah.

[gimel]

Was the diagnosis that you were hyper based on TSH only?  A low TSH doesn't mean that you are hyper, unless it is accompanied by hyper symptoms.  Tachycardia has been reported by patients that were hypo also.   Have you been tested for the actual biologically active thyroid hormones, free T3 and free T4?  Dosing a patient based on symptoms and the levels of Free T3 and Free T4 is far more effective than TSH.

[Katfalls]

I just had the same thing happen to me!!!! this is interesting. Due to tachycardia issues and several trips to heart Dr's etc they finally tested my thyroid and it was in a hyper state. I've been on synthroid for years and they lowered the dose from 100 to 88 . . .(I only have half of my thryoid left due to surgery and another nodule). Well about a week after the change my lips went crazy, hot, red, sore, painful cracks in the corners etc. I thought maybe some kind of yeast infection? I put yogurt on my lips and it took away the pain, rinsed mouth with cider/ soda. Tried all kinds of things, have started taking a B complex and that seems to be helping lots. So you might look into that. They are still not back to normal but feel tons better.

[6hashi]

Hello ,
I had peeling lip and sinusitis for so many years now , when I discovered that I have hashimoto ,  I  thought this will solve the problem , it didn't yet , which in certain manner indicates that I am still Hypo .

I would be glad to hear if treating the hypo stops the dry lip for some one !!
however, don't give up hope !

Thanks,

[gimel]

For myself,  having chapped lips and sinus problems has always seemed to be related more to being hypo. When I read the first part of your post, I immediately thought that here we again have a patient that is being medicated based on TSH level.  Is that the case?  Or has the doctor done additional thyroid testing?  If so, please post the results and reference ranges, in order for members to provide you the best response.