Help prep for endo appt tomorrow?

[Bttrfly62]

Ok guys- in order to get all of the relevant (and probably some irrelevant) info in this post, I feel a long one coming on. I apologize upfront.

I've posted a few questions over the last year or so, but I'll try to consolidate the info. I'm a 34 year old female. I have had Hashimoto's since the birth of my 1st child when I was 23. I was taking Levothyroxine for most of the last 11 years. I increased my levo 25mcgs during every pregnancy, and was not able to go back to the lower dosage post pregnancy (so after first child I was controlled for 2 years on 150, went up to 175 for the second child and for the 3rd child went up to 200). However, in the last year, they have not been able to control the levels (I yo-yo) So i'm going to post my levels for the past year- including medication and dosage (i've changed meds 3 times)

Please note Standard ranges for results below:
TSH: 0.36 - 3.74 m[IU]/L
FT4: 0.76 - 1.46 ng/dL
FT3: 2.3 - 4.2 pg/mL
TT3: 0.60 - 1.81

Test Results and medications below:
*5/12/15*
275 mcgs of Levothyroxine (was MISERABLE on this medication. constantly swollen and tired, regardless of the levels over the last 4 years)
TSH: 4.69 H
TT3: 1.04
FT4: 1.23
*8/03/2015*
175 mcgs of Synthroid + 5 mcg of Cytomel
TSH: 23.05 H
FT4: .86
*9/23/15*
200 mcgs Synthroid + 5 mcg of Cytomel
TSH: 3.61
FT4: 1.09
*11/05/2015*
No dosage change from above: 200 mcgs Synthroid + 5 mcg of Cytomel
TSH: 4.51 H
FT4: 1.05
*1/7/2016*
200 mcgs Tirosint + 5mcg of Cytomel
TSH: .75
FT4: 1.33
*3/31/16*
No change from dosage above 200 mcgs of Tirosint +5mcgs of Cytomel
TSH: .04 L
FT4: 1.58 H
FT3: 4.0
*6/16/16*
188 mcgs of Tirosint + 5 mcgs of Cytomel
TSH: 7.08 H
FT4: .94


*Please note that she does not regularly test my FT3 number and the only time it was tested, I was not told not to take my Cytomel prior to testing. This result may not even be accurate*

Only twice have my numbers been within range, and always on their way to too high or too low- with no med change. Even when in range, I felt exhausted. Starting in December (coinciding with my new med Tirosint), I started to struggle with weight when I had not before, without any changes to my eating habits. Even though I went hyper on Tirosint my symptoms more closely aligned with hypo (weight gain, exhaustion, brain fog, frequently cold, heavy prolonged menstruation. Frankly when I came back hyper in March, I was shocked. My weight struggle and exhaustion had hit a peak at that point. She said she was shocked and expected the exact opposite symptoms

Because my numbers aren't where she wants them again, she wants to go back to 200 mcg of Tirosint (not cheap!) and 5 of Cytomel. However, I just left that dosage in March because it made me hyper.  

So what I'm wondering is if one of you whizs can take a look that the numbers/meds above and see a pattern? Should I be looking at something other than the thyroid? (I was tested for celiac and blood test positive for celiac, but there was no damage to the intestines, so absorption should not be affected. I'm working to get my Vitamin D where it should be, too: (Standard Range: 13 - 29 ng/mL  My Level: 20 (In March) 50,000 D3 weekly for 2 months. Repeat testing last week, My Level: 29. Repeat previous script and retest)

I know these results are not as helpful because there is no usable FT3 level, but is that number the key? Is there no way to see a pattern or possible other cause without it? I'd like to go in tomorrow with a plan for testing and some idea of what I think might ultimately be causing this fluctuation. Gotta be your own advocate, right?! Any thoughts, or questions, are welcome!

Thanks in advance, and I apologize for the length of the post.

[gimel]

It is hard to discern very much from those test results because you are missing a very important test, Free T3, with one exception.  Obviously you have erratic results on TSH, but that test is pretty useless when already taking thyroid med.  So having a low TSH does not mean you have become hyper unless you have hyper symptoms due to excessive levels of Free T4 and Free T3, which was not the case in Jan. 2016.

The most important considerations are symptoms (of which you have many) and Free T4 and Free T3 levels.  Typically symptom relief requires Free T4 at the middle of its range, at minimum, and Free T3 high enough in its range to relieve symptoms.   Beyond that there are other factors that can cause tissue thyroid levels and effects to be different than what would be expected by just looking at the Free T4 and Free T3 levels.  Serum thyroid hormone levels can be different from tissue thyroid levels, dependent on the rate of transport into the cells.  Transport can be affected by a large number of things.  In addition, metabolism of thyroid hormone at the cellular level can be affected by several things.  Reportedly the best measure of tissue thyroid levels is the ratio of Free T3 to Reverse T3.  Reverse T3 is a mirror image molecule of T3, but is biologically inactive.  Excess levels can block the effect of Free T3 and cause hypothyroidism.  In addition, low or high cortisol or ferritin can adversely affect tissue thyroid effects (symptoms),

I don't want to create more questions than answers right now, so suffice to say that for tomorrow I would recommend that you request to be tested for Free T4, Free T3, Vitamin D, B12 ferritin, and morning serum cortisol.  If the doctor resists, just insist on it and don't take no for an answer.  Also, defer your morning thyroid med dose until after the blood draw, in order to avoid  false high test results.

A good thyroid doctor will treat a hypothyroid patient clinically by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.  So I would also ask the doctor if he is going to be willing to treat clinically, as described.  If not, then you will need to find a good thyroid doctor that will do so.

[flyingfool]

Yes the Free T3 levels are key.

The free T3 is the only molecule that is used at the cellular level. Which is the ONLY place that ultimately matters.  So you should DEMAND that the Free T3 ALWAYS be tested.

This is particularly true since you are on a T3 medication.  Albeit a very low dosage, but in my opinion giving someone a T3 medication without testing for it borders on malpractice.

Also by ALWAYS getting BOTH the Free T4 and Free T3 you can see what effect a dosage change of T4 medication does to your FT3 level.  This is the indication of your body's ability to convert the T4 into usable T3.

Think of FT4 as the gas level in your gas tank in your car.  It is important that it is there an available. But the engine actually only runs on the amount of fuel that gets to the engine. That is what Free T3 level represents.  

So yes you need the "storage" hormone of FT4 in your blood so that if your body needs some more thyroid, it can use that FT4 in storage and convert it into T3.  it is the Free T3 that is ultimately and ONLY used by your body's cells.

have you ever had your iron or Ferritin levels checked?  Ferritin is needed to metabolize the thyroid hormone.  Also have you been checked for vitamin B-12?  If that is below about 700 you might want to supplment B-12 as deficency can cause fatigue.

Cortisol can also throw things out of whack.  So maybe that is worth checking as well.

Hashi's is a progressive condition, so that the thyroid gland produces less and less hormone over time. So it is not surprising that increased doses over time has been necessary.

What was the reason for switching to Tirosint?  Did you have allergic reaction to the fillers in the other T4 medication or was the Dr concerned with absorption?

You can see that your FT4 levels went up after the switch so that absorption must have improved as it was the same 200 mcg dosage as before.  excpet for the alst test.  Which could be simply that your body finally recognized it was Hypo and converted some more of the FT4 into FT3.

This is exactly why it is so important to ALWAYS get the FT3 test as well. So you can see what is going on.  That is if conversion is occuring and if your body has enough FT3 available etc.  TSH is nearly a wrothless test.  TSH can vary by as much as 70% in a single day so at this point it is nearly worthless. But most Dr's will not stop testing for it.