Thyroid Disease Forum banner
1 - 11 of 11 Posts

·
Registered
Joined
·
18 Posts
Discussion Starter · #1 ·
Hi everyone,

I really like this forum and have read a lot of interesting posts. I have read a great deal of some of the struggles that go along with getting a diagnosis and even more so, correct treatment. I have a plan, and I was hoping to get some feedback on whether or not this sounded like it was a good idea.

In a nutshell: Last January, and even before, I developed a sudden onset of symptoms. It basically looks like I went fishing online for "hypothyroidism symptoms" and just made a list. I can't handle the cold. I began gaining weight despite 4-6x a week at the gym, logging foods as I always and still do, etc. I've gained about 15 pounds or so over the course of the year and it is showing few signs of stopping. My hair appeared a tad thinner. I suddenly became extremely constipated to a near emergency level on multiple occasions. Despite being fatigued, I found myself unable to sleep. My blood pressure was a bit elevated for the first time ever. I went to the doctor, and my TSH was near 6. So I was put on Levythyroxine. This was all in January.

By late April, all the symptoms remained (except the constipation which was relieved by the Levy). After I was getting depressed enough to no longer care about life, I stopped the Levy... All symptoms remained, except my BP coincidentally leveled out. My BP has been elevated and low at various points in the year, usually each episode lasts weeks to months. My TSH has been a low as 2.64 (once, In March when I coincidentally did feel better overall) but is typically between 3.2 and 3.9. In prior years, my TSH was generally around 2.5 or 2.6. My dad suffered from hypothyroidism, so none of this is too shocking...

I've gotten the runaround with doctors. I had to "fire" my first primary care doctor as she only cared about the lab results. I have a new one now, and he seems to be real good and thorough. I've seen an endocrinologist, who immediately dismissed the thyroid being an issue seemingly only because I mentioned it and went towards an adrenal tumor or cushings. While my cortisol levels are elevated, I have tested negative for cushings. I've also read it's not unusual for cortisol to be elevated for those with hypothyroidism either. I'm basically right back at square one now after a year with a new primary care doctor.

My T4 is generally around 1.1 or 1.2. T3 has never been tested. On one test, during a time I felt well (I seem to always be doing relatively well when the major tests come around) my TPO was 13 and my thyroglubin was <1. This was also the only test where my TSH came back in the 2 range.

With that said, I seeing my primary care doctor on Feb 1. It was him that actually ordered a lot of these tests originally, and he's said he will work with me on finding out what the problem is. Would it be a crazy idea to see him and ask about thyroid treatment despite the endo not feeling it's necessary? I was not too fond of Levythyroxine. Perhaps a natural thyroid treatment? I do not know how much he will dive into this, but I know he'd at least be willing to listen... just wondering, at this point, what my next move should be because I've been stabbed so many times for blood work, I've had two 24 hour urine tests... everything, to me, still points toward my thyroid. I am still not myself now, a year later.... In the meantime, I'm limiting caffeine intake, and continuing to do everything I do as far as diet/gym... just to make sure everything is somewhat stable for when I see him and there's no other possible causes of these issues...
 

·
Super Moderator
Joined
·
6,662 Posts
Welcome to the Forum!

I suggest posting dates, lab results and ranges onto a word doc.

My TSH has been a low as 2.64 (once, In March when I coincidentally did feel better overall) but is typically between 3.2 and 3.9. In prior years, my TSH was generally around 2.5 or 2.6. My dad suffered from hypothyroidism, so none of this is too shocking...
You definitely have something going on. Optimal TSH is 1 or some think .000

My T4 is generally around 1.1 or 1.2. T3 has never been tested.
Do you have ranges for this test? I'm assuming you mean the Free T-4 or FT-4?

TPO was 13 and my thyroglubin was <1. This was also the only test where my TSH came back in the 2 range.
TPO is quite low here but it can change - how many times has it been tested?

I've had two 24 hour urine tests...
Was this for cortisol? You might consider 24 hour saliva testing for cortisol.

Have you ever had an ultrasound of your thyroid?

Do you eat any one food type in excess?

What supplements do you take?
 

·
Registered
Joined
·
18 Posts
Discussion Starter · #3 ·
Hi there. Thank you so much for responding. TPO has been tested only once, along with the thyroglubin. Yes, both 24 hour urine tests were for cortisol and they also checked metanphrines. I had excessive normetanephrines on both tests (4x too high on one, 2x too high on the other). The endocrinologist is convinced there are two reasons for this. 1) Drinking too much fluids, so I am urinating too much, causing higher values. 2) the antidepressant I am on, which I do know can cause false positives. I have done a saliva test of cortisol once, and it was a tested I purchased myself. It tested my levels at various times of the day and it showed my cortisol was lowest in the AM and highest in the PM/evening hours. This is all the test really tested for though. I purchased the test because my doctor at the time didn't believe there was really to do any cortisol testing.

I do not take any supplements. I do not eat any particular food in excess. Imaging of thyroid showed it to be normal in September.

After looking at tests, I did get a T3 test once as well which I forgot to mention. This was on August 31 of 2018. My T3 was 106 ng/dl. I attempted to upload a word doc with the variation in tests but it said I am not permitted to upload the file type, so I will just try to copy and paste the details below.

Date

TSH

T3

T4

2/11/2014

3.25

8/19/2014

2.65

6/24/2016

2.46

1/24/2018

5.35

1.2

3/2/2018

2.64

1.2

4/20/2018

3.88

1.2

8/31/2018

3.29

106 ng/dl

1.1

Jason
 

·
Registered
Joined
·
18 Posts
Discussion Starter · #4 ·
Ouch..that doesn't look very well. To answer your question about the variation of T4, I had four tests on it last year and the results were: 1.2, 1.2, 1.2, 1.1.
 

·
Super Moderator
Joined
·
6,662 Posts
What are the (ranges) ? Looks low to me but without your range its hard to comment
 

·
Registered
Joined
·
18 Posts
Discussion Starter · #6 ·
Hi there. The ranges of T4? It was always 1.1 or 1.2 on every test. So between 1.1-1.2. Hope that's what you are asking. :)
 

·
Super Moderator
Joined
·
6,662 Posts
No - what are the lab ranges? Usually found ( ) after the result. Every lab uses different ranges - usually due to manufacturer of test which has different ranges.
 

·
Registered
Joined
·
18 Posts
Discussion Starter · #8 ·
Oh I see what you are saying :) I also forgot to list my most recent thyroid check for November, which was .9 for my free t4 and 3.17 for my TSH.

So the lab "normal" range for T4 is listed as .8-1.8 The normal range listed for TSH is .4 - 4.5.
 

·
Super Moderator
Joined
·
6,662 Posts
(( 1.3-1.55)) is what I refer to as the "range within the range" which is 1/2-3/4 of the range. Your FT-4 should fall somewhere between those numbers to feel your best.

You need to be specific about whether your lab is a T4 or a FT-4 as the tests are completely different and it does matter. T4 or Total 4 is useless - FT-4 or Free T-4 is the test you want. That combined with FT-3 or Free T-3 will tell you the free and unbound thyroid hormone in your system at time of lab draw. Always take thyroid hormone replacement after your lab draw, be consistent on time of day you have the lab draw.
 

·
Registered
Joined
·
18 Posts
Discussion Starter · #10 ·
Well, I guess that's a good question regarding the test for T4. My labs from my original primary care doctor (the majority of the test results) just say "T4, Free". The other lab place described it as "Free T4".
 

·
Super Moderator
Joined
·
6,662 Posts
"T4, Free". The other lab place described it as "Free T4".
Same test - key word is 'Free"
 
1 - 11 of 11 Posts
Top