Wife finally goes to Endo Tuesday!

[flyingfool]

Following test results & dosage of Levo T4 leading up to the endo appointment:

3/6/12 taking 125 mcg Levo primary symptom being very tired/fatigued

TSH 0.523 (0.465 -4.68)
FT4 1.06 (0.78-2.19) = 19.9% of range
FT3 3.26 (2.77-5.27) = 19.6% of range
TPOab 72 (0-35) would seem to indicate Hashi's
TGab 20 (0-40)

Under duress the PCP increased her levo to alternating between 125 mcg 1 day and 137 mcg the next for an average increase of 6 mcg = 131 mcg

5/4/12

TSH 0.201 (0.465 -4.68)
FT4 1.14 (0.78-2.19) = 25.5% of range
FT3 3.11 (2.77-5.27) = 13.6% of range  FT3 actually went down with increase in meds!

My wife's insistence stating that fatigue really was not improved resulted in PCP upping to taking 137 mcg every day.

6/28/12

TSH not listed on computer charting (0.465 -4.68)
FT4 1.16 (0.78-2.19) = 27.0% of range
FT3 3.32 (2.77-5.27) = 22.0% of range

Primary Symptom still fatigue.

I should also mention that back on 3/22/12 she had Ferritin tested at 32.5 (6.2-137.0) also her total cholesterol and triglycerides were also elevated although HDL & LDL were within their individual ranges.

The overall difference between the March and latest end of June lab results with the total addition of 12 mcg are:
FT4 is up 0.10 or an increase of 7.1% of the range from the March levels
FT3 is up 0.06 or an increase of 2.4% of the range from the March levels

I'd like other opinions of what thoughts we should bring with us to discuss with the Endo.  I will be going to the appointment with my wife.

My thoughts are that she is still VERY low in her ranges.  It seems that she does respond to T4 meds but it is very marginal although the dosage increases were also very small.  Her FT3 seem in all three tests above indicate that they are equivalent or BELOW the FT4 in terms of the percent of the range.  I'm six one and half dozen the other whether this may indicate a conversion issue.  The fact the FT3 range is never higher leads me to think that there may be a conversion issue (my wife also supplements with Selenium every day).  On the other hand with her being so low in the range of FT4 there simply may not be enough FT4 available to convert.

WAY back well more than a year ago I think she actually got her FT4 to a high of 44% of the range (FT3 were not tested back then and she has switched Dr's since then). At that time she was feeling about the least symptoms she has ever been since starting on medication.  But Hashi's has seemingly sent her well below this level even with increased dosages of Levo over that time to where she is now at only 27% of the range.

I really wonder if Armour or other NDT may make sense or some addition of T3 along with a bump in T4 dosage?

Thoughts/ideas?

[gimel]

There is variability in every measurement, due to the many variables involved.  For example, take a look at this procedure for running a Free T3 test and I think you will see that there are many opportunities for variability to be introduced, no matter how careful the test procedure is followed, and of course that affects the outcome.  Also remember, we are talking about picograms per milliliter, or as sometimes reported, picomoles per liter.

Method Description

The instrument used is a Beckman Coulter DxI 800. The Access Free triiodothyronine (T3) assay is a competitive-binding immunoenzymatic assay. A sample is added to a reaction vessel with an anti-T3 monoclonal antibody conjugated to alkaline phosphatase. During the incubation, free T3 in the sample reacts with the anti-T3 antibody. Particles coated with streptavidin and biotinylated T3 analog are then added to the mixture. Unoccupied binding sites on the anti-T3 antibody are bridged to the particle through the T3 analog. After incubation in a reaction vessel, materials bound to the solid phase are held in a magnetic field, while unbound materials are washed away. Chemiluminescent substrate Lumi-Phos 530 is added to the vessel and the light generated by the reaction is measured with a luminometer. The light production is inversely proportional to the concentration of free T3 in the sample. The amount of analyte in the sample is determined from a stored, multipoint calibration curve. (Beckman Coulter Assay Manual 2007)

[goolarra]

Where FT3 and FT4 are concerned, I don't think they're "counting molecules".  Though they DO actually count RBCs, those are CELLS...way bigger than molecules and way more complex.  

FT3 and FT4 are measures of WEIGHT...so many nanograms per deciliter or so many picograms per milliliter, etc.  The variations in results among labs has to do with the test kits the lab uses, their sensitivity and population variations.  Local population variations often have to be taken into account, for example, some of the elements of a CMP are affected by elevation.  I live at over 3,000'...do I want to be compared to someone at sea level?

[flyingfool]

I realize each thermometer reads slightly differently. But if I use 10 different termometers, I bet I get a pretty darned close result on each of them!

Why would laboratories be any different really.  Are the population variety between human beings in FL that dramatically different than MI or WI?  I don't think so.

If you count some item such as red blood cells or thyroid molecules.  How can counting be THAT much different that the testing has to have THAT much variation between labs.  Either the freaking molecule is present to count or it is not.  How can that vary so significantly?

If the range is so much wider than some other lab, then maybe a different lab should be used since they clearly have such a high standard deviation there process is not as controlled and thus their reliability or precision is less than desirable.

TSH doesn't seem to have that much range variation. It seems the low to high is about 10  times.  0.3- 3.0 or 0.4-4.0 or 0.5-5.0.  Granted many don't use the AACE range, but most of them are fairly consistently upper range being 10 times the lower range or pretty close.  Granted TSH is a different measurement than Free Thyroid.  But the point is one would reasonably think that the spread between upper and lower would be proportionally the same.  Makes one wonder if they don't just pick numbers out of the air.  Of if the lab tech who is counting the molecules just counts until they get tired and calls it good enough and writes down a number. In which case the Std Dev will be high and the lower and upper limits will be wider.  Versus a more diligent person or lab technique where the range would be narrower and the std dev. smaller.

[gimel]

You really don't want to use the "most common range".  You should use the ranges used by the lab that ran the tests for your wife.  The reason for this is that lab results on the same blood sample would vary from one lab to another, due to inherent test variability.  If the same lab ran the same blood test sample numerous times, the results would also vary, due to test repeatability.  

As I understand it, each lab establishes their reference ranges, based on their own data base of test results.  That is why we always ask for the reference range for each lab result posted by members, in order to compare the result against that specific lab's range.  

[flyingfool]

What is the "most common range" for Ft3 and FT4 that we normally see?  I've never written them  down.

But as Barb points out above with such a wide range then percentage of the range would also be skewed.

When I went with a healthceckusa the lab we paid out of pocket. If I used that range FT4 (0.82-1.77) she would now be at 36% of the range for FT4.   and for FT3 range of (2.0-4.4) she would test out at 55% of the range instead of 27% and 22% respectively.  Still low but not nearly so bad as the current lab range.

[flyingfool]

Well we met the endo yesterday.  The jury is still out!

The Endo wants my wife to get an ultrasound and some other tests.  Some of which for fatigue issues Which he is going to coordinate with her PCP to do these tests. Which we assume will be B6, B-12, Iron, Ferritin hemoglobin etc

He really spent a LOT of time with us. Well over an hour maybe close to 1.5 hours explaining things etc.

Some hopeful signs were he mentioned that many Dr's "chase TSH" and that is the wrong approach.  So that was hopeful.  However he also seemed to possibly think that my wife was if I recall his words exactly "slightly over medicated."  Which he could ONLY think based upon her TSH of 0.201.  

Another hopeful sign was a statement he made about optimizing the medication to her.

I tried at least twice to him that with her FT4 and FT3 only in the 22 to 25% of the range seemed quite low and that many people need them to be mid-range and upper 1/3.

At this point he is taking the conservative and slow approach. He didn't want to change any medication levels and re-test in at least 3 weeks along with the ultrasound.  The next appointment is November 5th which is a little further into the future than we would like.  He seems to want to really study things and wait for these additional labs to make any sort of decision about medication.

He did seem to have a theory that I have never heard before related to thyroid levels and receptors etc.  I also have not read any testimonials that would align with his theory.

The theory went like this.  He said that sure I could up your dosage and you'll feel good "for a little while" like a few weeks.  Then you'll be back were you are now.  His theory is that the body is trying to self regulate itself.  If there are a lot of receptors (empty parking spaces in a mall parking lot) then you up your thyroid level to fill up those spaces and you feel good. But then the body self regulates and produces less receptors (makes the parking lot smaller) and try to shed the excess thyroid.

I think that MAY occur if EVERYTHING is working 100% spot on.  But the reason we are seeing an Endo is because everything is NOT working 100%.  Thus the body is NOT self regulating itself properly.

All I know is what all you folks report and that seems to be until you relive symptoms by getting the FT's to mid range and upper half to upper 1/3 you feel well.  And if approached slowly to not throw yourself Hyper, there seems to be no rebound effect at all that would suggest that the body is "self regulating" and you and your labs would show an excess of Thyroid.

The results of her additional testing may be interesting.  It will be interesting to finally see what he may propose.  It is I suppose possible that my wife is just low on B-12 or something that would help the tiredness.

The last two increases in T4 has helped and my wife is by no means in horrible shape. But she also isn't 100% either.  

The weight gain and inability to lose weight is the other factor.  When my wife told him that strict weight watchers and 3 to 7 miles of brisk walking a day resulted in little weight loss after the first couple weeks and then like 6 weeks with ZERO loss.  He asked; "well did you feel better".  And I think was shocked when she told him no.  In fact she felt worse being more cranky, tired etc.

I'm not convinced that this endo won't do good. I don't have a problem with going slow and being conservative.  But I also get the distinct impression he is not likely to increase the meds much if at all even though  "I believe" she is pretty low in the range.  he said a couple of times he believes that she is "pretty close" to the right dosage.  He seems to think it is near the final tweaking stage.  I  hope he is right but I'm not so sure he is.

I also got the sense that he may try moving the meds one way or the other to see how the labs change.  And thus then have a better indication as to what her body is doing and how it is reacting and thus able to better decide what to do.  I don't have a big problem with this other than I sense that he may desire a CUT to her dosage.  And obviously I do not believe that would be the right direction to go!

Like I said the jury is still out. We're willing to give him a chance.  Partially because we don't have a lot of other options without switching HMO's and Dr's again.  Which we can do with my work until next year.  Actually we'd have to make a determination BEFORE her next appointment as switching providers is only done once a year in October.  And her appointment is not until November 5th!  We may try to get on a cancellation list.  But it seems no one cancels these appointments because they are so difficult to actually get.

[gimel]

For info, I also had carpal tunnel symptoms when I got back into being hypo for a while when Armour Thyroid was not available and I had to improvise on my meds.  At first I related it to spending too much time on the Thyroid Forum typing.  Fortunately Armour again became available, and after switching back to it, in a matter of days, the CTS was gone, and hasn't returned.  My conclusion was that the CTS was related to my Free T3 level being too low.

[goolarra]

I had CTS when hypo, and it is in one of those lists somewhere of hypo symptoms (isn't everything???).  CTS is actually pretty easy to diagnose.  

First off, numbness occurs when the wrist is flexed (palm turned down).  A slight extension of the wrist (palm turned up), which is the position the wrist brace keeps it in relieves the numbness.

Another telltale sign is the fingers involved.  In CTS the thumb through the middle finger go numb.  Sometimes, the whole ring finger goes numb, and sometimes it's just the side closest to the middle finger.  The little finger is not involved.

Anyway, I thought I'd never knit again, but I haven't had a problem since my meds were regulated.    

[flyingfool]

There was a thread on here a few weeks ago and several women in particular were all complaining about wrist and I think numbness all with low thyroid and when treated seemed to get better.  Maybe just a coincidence.

It seems like carpal tunnel also seems prevalent in Hypo people.  Or being low thyroid sets in place something that allows carpal tunnel to present itself.  Sort of indirect symptoms.

Very well may be totally unrelated.

With my wife's FT4 and FT3 both being about 25% or below in the range which as you point out are wide ranges leads me to believe that she has a long way to go for medication dosage.

I think I recall at one point, probably when she felt the best the best FT4 level was about 44% of the range.  Then of course over time Hashi's took effect and she has lost that and has not been able to get back up to any near that level.

[Barb135]

42 is not too young to be entering peri-menopause.

Tests taken in 2010 would no longer be relevant, as you know.  Yes, if she's taking a B12 supplement, her level should be higher, if she's absorbing the vitamin properly.

Not sure what to say about the wrists.  I doubt that's thyroid related, nor would that numbness and bending of wrist likely be related to a B12 issue.

[flyingfool]

My wife is currently 42 years old.

She is also currently having problems with numbness or hand falling asleep etc. She wears wrist supports while she sleeps.  It appears that however she sleeps she bends here wrists back and that somehow cuts circulation or nerves.  Not sure why this is happening really only in the last month or so.

She had 1 B-12 test done back in 12/29/10 which was 527 (230-1050).  But that was a long time ago.  So we really need to have the B-12 tested again.  Since that time she started taking B-12 supplements every day.

[Barb135]

Per your PM, I'm a bit late for the party and it looks like goolarra pretty much covered everything, thyroid.

One thing I did notice is the ranges for the FT3 and FT4; they're considerably broader than many/most we see and almost guarantee that nearly everyone is going to fall into the "normal" ranges. Makes it easy for the doctor, doesn't it?

The other thing is that, with the fatigue still being a major symptom, I really think your wife needs to pursue the vitamin B12 issue.  Vitamin B12 deficiency can cause the most debilitating fatigue imaginable and if left untreated, can cause nerve damage.  This is another of parameters that simply "being in range" is not good enough.  I have to keep my B12 level right at the top of the range, in order to feel well.  

Additionally, since the ferritin is relatively low in the range, she should ask for a full iron panel, to rule out iron deficiency anemia.

Not sure of her age, but she might also want to have the doctor check reproductive hormones, to see if she could be entering peri-menopause.  That can often cause weight gain/inability to lose.  Insulin resistance is another culprit for weight gain/inability to lose, since insulin is sometimes called the "fat storage hormone".

Totally agree with goolarra about the material you take to the doctor.

[goolarra]

As the old surgeon's expression goes, "It's better to be lucky than good."  Best of luck with the new doctor.

[flyingfool]

I never expected the Endo to read the information I bring per say. More as evidence of the research we've done.  I suppose you are right that I can pick one or two and have copies for him if he would like them.

I'm going into this with a positive but guarded attitude.  We all know finding a "good" thyroid Dr is not easy and is more of a luck of the draw sort of thing.  I'm just hoping that we may finally drawn the correct card out of the deck.

[goolarra]

"Serum ferritin and serum iron blood tests determine iron levels through different means. Your serum ferritin level is the amount of iron in your body, while serum iron measures the level of iron in your blood. Testing can be crucial, according to KidsHealth.org, as iron can build up to damaging levels in your body before symptoms appear.

Ferritin
• Iron is stored inside a protein called ferritin, which is found in many of your body's cells. By extracting a blood sample---not the actual protein---a serum ferritin test provides information about the iron level inside your body, according to the U.S. National Institutes of Health (NIH). A serum ferritin test can diagnose anemia, when you are iron-deficient, or hereditary hemochromatosis, which causes your body to store too much iron.

Iron
• Your doctor may order a serum iron test to determine if you have low iron or an iron deficiency. This test---which measures the exact iron level in your blood---can also diagnose hereditary hemochromatosis, according to KidsHealth.org."

I'm by no means a vitamin expert.  Hopefully, someone else will ring in.

My advice on the folder full of material you hope the new doctor will read:  Trim it down to the most important issues.  Once you've done that, trim it down again.  You'll only get so much of this guy's attention, so make it count where it really does count.

I know weight loss is a tough one.  I've fought my weight all my life, mostly successfully, so I totally appreciate the saying "slower than weight loss".  Many people who haven't had to battle the bulge all their lives really have no appreciation for how slow and quirky it really is.  For example, when you said "maybe eight pounds in the first few weeks", my reaction was "that's really good" (two lbs a week is max if the diet is healthy).  "...followed by ZERO loss fo the next 3 or 4 weeks..."  It happens.  We hit plateaus...she might have been a day away from dropping a couple of pounds all at once.  It's like thyroid meds...it's a long-term commitment.  My experience has always been that it's only difficult to keep motivated  until you start to feel better and your clothes start to get looser...after that, you have your motivation to continue.

[flyingfool]

Well the vitamin thing is a bit more difficult.  I'm at work and can only view the computer chart of the current HMO with the test results shown.  And it appears the computer chart doesn't even list every test done.  (Don't ask me why?) and I don't think we have access anymore to the old HMO computer lab results page.

But as I recall she was in range for D3 but with a huge range that doesn't say a lot. My wife also takes 4,000 IU's of D3 daily plus a multivitamin plus whatever she gets via food. Plus magnesium & selenium supplements.

I think she is also within range for Iron.  She also goes and gives blood fairly frequently and does not appear anemic on any test anywhere.  But again iron has a huge range.

I don't think we ever convinced a Dr to get a B-12 test done.  (again not sure if wife actually asked for the test or the Dr just didn't order it).  Maybe other people have better results of getting their spouse to do what you ask them to do!  LOL

The Ferritin level listed above I'm interested in what others have to say.  I don't know much about this.  But at only 20% of the range this seems like it could be raised.  How is Ferritin related to iron. They seem like they are the same thing but apparently not?

Her new Primary care Dr admits she doesn't know anything about T3 and only reluctantly added the two 6 mcg bumps in T4 to placate my wife as she was persistent in wanting an increase.  So I think she just did these 2 bumps and promptly provided a referral and get an Endo appointment.  The small bumps were just enough to oil the squeaky wheel until my wife could see the endo.

The endo she is seeing was recommended by a co-worker who is also Hypo. And when I called the endo's office I asked and the nurse believed they tested for both Free's and that is what we got to go into the appointment with yesterdays test results.  I also asked if he deals with Thyroid a lot or primarily diabetes.  The nurse says that he does more endocrinology work NOT related to diabetes.  He also does I think research at the University of Wisconsin as well as his practice The nurse says that the patients all rave about this Dr and says he is a bit of a "character" but everybody loves him and he really spends time with the patient.

I'm going to go in there with my wife with a whole folder of printed out stuff that I've accumulated over time. Trying to be loaded for bear but hope I won't have to use any ammo.  But I don't want to get my hopes up.

I hope this guy is great!  I also hope he indeed does do research. Because I'd love to offer him some suggested research and see if he couldn't FINALLY do a scientific work that would allow for a revamping of the FT4 and FT3 reference ranges!!!!! and to underemphasis TSH.  That would be a coup!


Oh yeah. The other main symptom other than fatigue is her being overweight and nearly complete inability to lose weight no matter how much exercise or dieting she does.  Strict weight watchers diet and walking up to 7 miles a day resulted in maybe 8 pounds lost in first few weeks followed by ZERO loss for the next 3 or 4 weeks at which point my wife gave up in disgust/frustration!

[goolarra]

As you said, the conversion issue is a bit of a toss up...on T4-only meds, until you get to 50% of range, any inference you make on conversion is shaky at best.  

Still, 137 mcg is getting up there as far as dose is concerned, especially if we're to assume that she still has some thyroid function since her labs are still decreasing even with increases in meds.  

If the doctor is amenable, why not try adding some T3 in (along with the increase in T4).  It can always be d/c'ed if it doesn't help...

I assume vitamins have all been tested...or are you a "do as I say, not as I do" kind of guy?  LOL