Need suggestions

[Acadianarose]

After reading many of these posts, it sounds like too many of us have the same problem.  This is my story:

About 2 ½ - 3 years, I suddenly had a huge amount of hair loss that lasted for several months.  I went to my doctor who asked if I had weight gain, joint muscle pain, constipation, etc.  I said that I did have all of those complaints and he thought I had a thyroid problem.  He tested only TSH which was normal.  So I took extra vitamins for my hair and just dealt with the rest of my complaints.

Last summer, out of the blue again, I had hair loss, extreme fatigue, severe joint pain, loss of muscle strength, in addition to the continued weight gain and constipation.  I also had a really sore throat for several months.  So I went to the doctor again, who ran TSH (1.1) and T4 (1.25).  Since those results were normal, he referred me to another doctor.  She tested for thyroid antibodies, which was negative.  She suggested trying a gluten free diet.  So I tried several other doctors.  

Also, I have always been very slim. I am 5’5” and my weight three years ago was 112 pounds.  Now I weigh 135 pounds.  

Finally, a doctor decided to do a thyroid ultrasound which showed an enlarged thyroid with two large nodules (maybe others.  You can’t really tell from the report).  The doctor ordered a biopsy which was negative.

So here I am thinking, okay at least now we know I have a thyroid issue and now I will get some treatment.  But the doctor is refusing to do anything since my blood work was normal.  I do not know what to do.  Even my husband is starting to think I am out of my mind.  

Any suggestions?

Thanks, Linda

[Barb135]

You should always have Free T3 tested each time you have TSH and Free T4, but Free T3 testing is even  more important when one is on a medication with a T3 component, such as Armour.  

Sometimes, doctors are "trainable" and will order tests requested by patients.  If yours won't, you should try to find another.  

And yes, there could be something going on, in addition to thyroid.

[Acadianarose]

Thanks everyone.

I have considered that there could be something else going on, especially because x-rays showed bilateral apical pleural thickening.  However, based on all of my complaints in addition to my body temperature of 96.4-97.2, I believe that rather than something else going on, it is a case of something more going on than just a thyroid issue.  

The doctor I am seeing now is an internist.  His is definitely not a thyroid expert.  But thyroid experts are few and far between here.  I am being referred to a Pulmonologist, so he may have more answers.  

However, I did convince my doctor to let me try a very low dose of Armour Thyroid to see if it helps.  Hopefully, it will be enough to see at least some improvement.  

[Barb135]

T3 Uptake is also considered to be an obsolete test and of little value.  The fact that your doctor is ordering obsolete tests, indicates that he might not be a good thyroid doctor.

I agree that you need to have the Free T3 and Free T4 tests done and verify which antibody test(s) were done. Also get Vitamin D and B12 tested.  

I don't recommend self medicating, especially with OTC products, since they aren't regulated and you don't really know what you're getting.  Additionally, in the U.S, OTC meds are not allowed to have any measurable thyroid hormones in them; all you're getting is ground up tissue minus the hormones.

[flyingfool]

Looks to me like the test were for "total" and not the better "free" hormone tests.

I'd recommend getting the free tests done for both FT4 and FT3 before really doing much.

It is hard to get many Dr's to look past TSH. And most Dr's believe that TSH like what you have is about perfect.  So the Dr is less likely to prescribe medication.

Have you checked your Vitamin D3 and Vit B-12?  They both can cause fatigue.

It is easy to blame the thyroid for everything so you have to consider the possibility that it is not thyroid related. But without the Free hormone tests it's hard to rule in or out.

I'm not overly convinced that dietary cholesterol has much affect on blood serum levels of cholesterol.  But it is odd that it has swung so dramatically?  Have your other symptoms changed in that same time frame?  In other words do they correspond with each other in timing?

[Acadianarose]

Red Star, I have come to that conclusion.  I am going to bring my doctor some information on Armour to see if he will at least let me try it.  If not, I am going the non-prescription route.  

I picked up some lab results that were done last week.  The T3 test that was done was a T3 uptake.  

T3 uptakte  31 (range 24-38)
T4 was 6.6 (range 4.9-11.7)
TSH was 1.133 (range 0.35-4.940)

Sed rate: 22 (range 0-15)

One really crazy result was my cholesterol test – In September 2012, my cholesterol was 173.  Now, it is 233!!  Up 60 points in 6 month?  My triglycerides are down from 130 to 88.  I eat very healthy, especially the past several months so the increased cholesterol was really shocking to me.  Since that is a sign of hypothyroidism, I am hoping my doctor will let me try the Armour.  

Thanks everyone for your help.  This is so disheartening.    

[Red_Star]

There is an non prescription product i found from Nutri Meds - Desiccated Porcine Thyroid Health Capsules.  I've never tried this product but in your situation (odds of finding a doctor to treat you is pretty low) i'd give it a try personally.  $29.95 for 90 tablets/capsules.

[Barb135]

An enlarged thyroid with multiple nodules is an indication of Hashimoto's Thyroiditis,  Do you know which antibody tests were done?  There are 2 of them that need to be done to confirm/rule out Hashimoto's; if only one of those tests was done, you could have been misdiagnosed.

It's not at all unusual for symptoms to show up, long before thyroid labs indicate an issue.  We've seen many members go through the same thing.  Finding a doctor who will treat by symptoms is not easy.

Was that T4 a Free T4 or was it total?  As flyingfool mentioned Total and Free are not the same things. If your lab report doesn't say "free" or FT4, then it's total, though the result looks like what we normally see for Free.

I don't see a Free T3 result.  You should try to get that checked.  Often FT4 can be normal, but FT3 is too low.

[flyingfool]

Are you sure the blood test for Thyroid were for FREE T4 and FREE T3?  If not then you need to get these tests done.

If you have the lab report please post those exact results along with the reference ranges.  If you do not have the report then call or if necessary write your Dr to get the report. The Dr's are required BY LAW to provide the results to you.

Being "in range" has NOTHING to do with having enough thyroid FOR YOU.  

If you've read a lot of posts here you probably have read that many people find they need to be WELL up in the ranges in order to feel well.  Being towards the bottom half is very suspect and MANY people will be symptomatic.

In fact the better rule of thumb when people are symptomatic and are within "normal" range is that they need to target closer to BOTH of the following;

1) Free T4 to be in the MIDDLE of the range (50%) or slightly higher

AND- that means in addition

2) Free T3 to be in the UPPER 1/3 of the range (66.7%)

Notice that these are Significantly higher than just at the bottom end or "somewhere" in range.

Also understand that the "total T4" and "Total T3" are significantly different tests than the "free" test.  The "total" tests are considered outdated and obsolete and of little value.

The Free hormone tests and counts the hormone that is actually available for your body to use.  Total counts both usable and unusable hormone. So it really doesn't tell you how much hormone is actually available.

Measuring "total" hormone is like measuring the amount of gasoline in your fuel tank when what you really want to know is how much gas is getting to the engine.  Do you need fuel in the tank to get gas to the engine, you bet. But the fuel in the tank tells you NOTHING about if there is a clog in the fuel line and your engine is not getting enough fuel.

The "free" test actually measures the fuel getting to the engine in this analogy.