This is topic Question about Thyroid in forum Medical Questions at LymeNet Flash.

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Posted by Nicole_Denise (Member # 20620) on :
I have heard that the "basic" thyroid test doesn't always catch all thyroid problems.

I had a lot of symptoms of a thyroid problem, and went and got whatever the most basic blood test is.

It came back normal- but my symptoms have gotten worse. I now have difficulty swallowing, and it feels like I have a lump in my throat.

I would be tempted to push for another test- but the doctor didn't even want to do the first.

When I mentioned my nerve symptoms, her wrote me off as "stressed".

Is it worth it to fight with him over getting a better thyroid test?
Posted by Leelee (Member # 19112) on :
My thyroid values are normal as well, but I have throat problems such as a gummy lump feeling, sometimes a hard knot feeling, trouble swallowing, etc.

I chalk mine all up to Lyme. [Frown]
Posted by Pinelady (Member # 18524) on :
Yes it is worth it.

I would ask for a ultrasound to determine if

something is getting large enough to warrant

attention. Many goiters are preventable even if

hormone levels are normal. But I did not know

that until mine had got so large I had to have it

removed to breathe. But you have to have a good

doc that knows this too. It may also be some other

abnormality that requires attention.
Posted by Lymeorsomething (Member # 16359) on :
You can also order most blood tests online if you pay up front....another option... (ohhh, but i'm not sure about canada in this case).....

You don't need a MD for everything...

If you have lyme, it may be easier to try to resolve infectious issues first and worry about hormones later...
Posted by Fran_40 (Member # 20176) on :
Hi Nicole_Denise,
I would do as Pine Lady suggested and ask for an ultrasound of your thyroid. I have a "cold nodule" on my thyroid, and my blood levels are still within range.

The only reason I knew I had this was because my hormone levels went a little whacky at one time, and they thought I had hyperthyroid, but not the case.

I think it can be hard to detect in the blood. Testings just aren't that accurate.

So, yes keep pushing for testing, and change your Dr. as he doesn't seem very helpful to you.

Remember, we are our best advocate!

This is my opinion. Best of luck with this! Fran
Posted by Nicole_Denise (Member # 20620) on :

I am trying to change my doctor, but I won't be able to get into my new one until September.

But I can try a drop-in clinic. I just didn't want to unless it really was worth it, as the waiting time in the clinic is huge.

Ugh. I think I spend more time at the doctor's office than I do at home!
Posted by Lymeorsomething (Member # 16359) on :
Actually blood testing is generally fine for just can't rely on TSH alone....have to look at total T3 and T4 as well as free....
Posted by n.northernlights (Member # 17934) on :
About ordering tests youself: has a thyroid panel, TSH ft4 ft3 . They also have the old one with t3 uptake, which is an obolete name as it only measyres ft4 kinda backwards, do not choose that one.
Wwhat to look for: normal TSH is very close to 1, and ft4 and ft3 should be around mid-range in normal people. Should be in the upper half when people are taking thyroid hormones.

Often people have symptoms when TSH is above 2 to 2,5. In Germany some labs have lowerd the upper end of the reference range to 2,12, some to 2,5. One lab at least in the U.S. has also lowered the range to 2,5.

But many labs in the U.S. still have 5 or6 as the upper end. Many many people are quite ill at that level. Should be close to 1.
Posted by Pinelady (Member # 18524) on :
Blood testing for function is fine. But you can have a huge thyroid causing symptoms like you

describe and it will be missed if hormone levels are normal and if you don't have a good endo. I

had 2 prior to finding the best. He told me if I had seen him a lot sooner I would not have to be

having surgery to remove one so large. 9x7 and 9x4 on US. Surgeon said it was one of the largest he

had ever done. Endo told me if I had taken meds. it would have prevented it from growing. So if it

is a goiter you can catch it before that happens. Funny though I had many US's and biopsy before I

found one that knew this. Symptoms should not be ignored as some cancers are incidentally found this way.
Posted by mmbl (Member # 20642) on :
I have Graves Disease which its main symptom is the affects on the thyroid. The other posters are correct about the entire thyroid panel, T3 and T4 and TSH. Because even some of the panels can be normal when there is a problem, all need to be tested. Ask you doc for a full panel, or seek another doc or see an endocrinologist. Good luck!
Posted by Lemon-Lyme (Member # 19229) on :
Get tested for TSH, free T3, free T4, and thyroid antibodies. If TSH >2.5, T3/T4 is near the bottom of range, or antibodies are high, ask for thyroid ultrasound.
Posted by coltman (Member # 21272) on :

Get tested for TSH, free T3, free T4, and thyroid antibodies. If TSH >2.5, T3/T4 is near the bottom of range, or antibodies are high, ask for thyroid ultrasound.

What exactly does it mean? My tsh is not above 2.5 (its 2.3 or so ) but my pcp who ran said its very close to the abnormal range. I have whole slew or endocrine problem ( low cortisol, low testosterone) and lately they actually went into severly abnormal range

Normal endo would probably treat them - except I don't trust them anymore , they did nothing but dismissing me when my labs were borderline , but symptoms were still there .
Posted by n.northernlights (Member # 17934) on :
yes, your TSH is close to abnormal.
Was the blood drawn in the morning, or afternoon? Afternoon numbers can be half the morning numbers...I had that. I was quite hypo when my TSH was 2,5. But then my ft4 was at the bottom of the range. Doctor dismissed there could be anything wrong with thyroid.
On the thyroid forums, they say go to the pharmacy ans ask which doctor prescribes Thyroid USP like Armour Thyroid, as those doctors tend to look more at the whole picture and not just numbers. Also, a D.O is trained to look at the whole picture.
These doctors are not endocrinologists. The later only look at numbers...
TSH is a pituitary hormone
ft4 is the prohormone, important to look at
ft3 is the actual hormone

In lyme, the thyroid hormones may not be working because the cells have resistance because of infection and cytokines. So your numbers might not be showing how you feel.

Posted by sutherngrl (Member # 16270) on :
My T4 is within normal range, but very high normal. 10 something and below is normal(can't remember exact number) and mine is 10 something just within normal. This would indicate hyperthyroidism. However, every doctor says its normal.

I have lost weight, down to 105 lbs from 128 and I have horrible anxiety that I can't explain and severe fatigue that hasn't improved after 14 months of Lyme treatment. Also my throat always feels like its closing up, don't know if that is related or not.

After reading this thread, I wonder if I need to be on something for my thyroid. I am going to mention this to my LLMD next month.
Posted by Lymeorsomething (Member # 16359) on :
It's not always the thyroid either. Lyme screws with the entire HPA axis. If your cortisol tanked, adding more thyroid meds may just make you feel worse.

With hormones, always look at the big picture. Ultimately, if toxins are monkeying with receptors adding in hormones may do little to nothing until the infection/s is addressed and cleared...

It may be better to play the waiting game if your numbers are not severely off the charts bad...

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