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Hypothyroid for years... New Dx Graves??

I recently had my second child this past June (4 months ago). I have been hypothyroid for the past 8 years and have been on the same dosage of levothyroxine (50mcg), the entire time. Even throughout my pregnancy. My levels have been great since being on my meds.

After having my daughter I decided to have my levels checked as I just didn't feel good and wanted to eliminate that as a possible cause. MY TSH came back 0.02 and my T3 and T4 were within normal range. I then went to an endocrinologist as my primary care doctor had been the one to diagnose me and treat me all these years. I figured it was time to see a specialist.

This doctor (Endo) saw me and told me to immediately stop taking my levothyroxine and he wanted to run a bunch of blood work in 3 weeks. 3 weeks go by and I get my blood drawn. I see him back at his office to get my results and he tells me he is 300% sure I have Graves disease because my TSI was 394.

I was surprised he was so quick to diagnose and not check my levels in a few weeks, once the T4 meds were completely out of my system plus I am 4 months postpartum and feel like my hormones are all out of whack because of that as well!

On a side note, my primary had advised me to take Lecithin 1200mg 3 times a day for a week to treat a mastitis infection then continue taking 1200mg once a day as a preventative. The only reason I mention this is because, little did I know, soy affects your thyroid and Lecithin (at least the kind I was taking) is made from soy.

Is it possible I could not have Graves and that my blood work was affected my postpartum hormones and taking the soya Lecithin?

I am currently looking for a second opinion.
3 Responses
649848 tn?1534633700
I think you're right to get a second opinion... TSI results aren't just a raw number, such as your 394...TSI is a percentage.  If the result was 394%, then I'd say yes, you probably have Graves Disease and it's entirely possible you could have; however, I'd certainly want thyroid levels tested again and not just the TSI.

Since you were on Levothyroxine for 8 years, we'd assume that you were hypothyroid, so we'll start there... were you ever tested for antibodies to determine what caused you to be hypo in the first place?  Hashimoto's is the # 1 cause of hypothyroidism in the developed world.  There are 2 antibody tests that determine Hashimoto's.  Those are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb).  You need to have them both, because some of us have one or the other, some have both...

Some people, actually, have, both, Hashimoto's and Graves at the same time, with one or the other being dominant at any given time.

All of that said, just because your TSH went down to 0.02, does not mean you were even hyper, unless your actual thyroid hormone levels were too high and you had symptoms of being over medicated... You said your T4 and T3 were within the normal range... Were those Free T4 and Free T3?  They aren't the same as Total T4 and Total T3 and don't provide the same information... If you have those lab results, it would be great if you could post them, here so we could see them.  Also, be sure to include reference ranges, as those vary from lab to lab and have to come from your own report.

Also, please tell us what your symptoms are, as some symptoms can apply to, both, hyper and hypo...
As far as I know my old pcp never did extensive testing. Only my T3, T4 and TSH and not sure if it was total or free when she diagnosed me 8 years ago. I believe she probably misdiagnosed me which is why I no longer see her.
Here are my results:

6.7.     6.1-8.1 (g/dL)  
4.0.     3.6-5.1 (g/dL)  
2.7.     1.9-3.7 (g/dL (calc))  
1.5.     1.0-2.5 ((calc))  
0.4.     0.2-1.2 (mg/dL)  
0.1.      or = 20 Years 0.40-4.50
Pregnancy Ranges
First trimester 0.26-2.66
Second trimester 0.55-2.73
Third trimester 0.43-2.91

>900    <9 (IU/mL)  
394 H   <140 (% baseline)  

255     210-440 (pg/dL)  
111     76-181 (ng/dL)  
6.5     4.5-12.0 (mcg/dL)  
T4, FREE    
1.0     0.8-1.8 (ng/dL)  

Here are my symptoms:

Heart palpitations
Racing heart
Dry skin- hands feet lower legs
Peeling skin on hands and feet
Leg hair grows slow
Weight gain
Frequent urination
Frequent bm
Dry eyes
Increased appetite
Mood swings
Brain fog
Flushed red face several occasions
Hip and other joint pain
Lifted and peeling finger nails
General feeling unwell
Non existent sex drive

649848 tn?1534633700
Your TPOab (Thyroid Peroxidase Antibodies) is positive for Hashimoto's and your TSI is positive for Graves Disease, indicating that you have both.

When were these labs done?  The Free T3 and Free T4, both indicate hypothyroidism, not hyper... Likewise, most of your symptoms indicate hypo, as well.  

The only symptoms that, typically, go with being hyper are the heart palpitations, racing heart rate, sweating and frequent bm's, but many of us have those when hypo, as well.  I had them all, except the bm's, when I was terribly hypo.  I even had/have very low TSH and have had to fight doctors for years because they insist I'm hyper, when I'm not.

Are you currently, on any thyroid medication at all?
Interesting! The Endocrinologist took me off my levothyroxine cold turkey 9/10/16. These labs were done a little shy of 3 weeks after stopping the levothyroxine. Currently I don't take anything for my thyroid.

I currently take the following:

Lactation Blend Suppliment
Sunflower Lecithin
Probiotic 10 billion CFU
Prenatal and Breasfeeding multivitamin

I forgot one thing I noticed also is these tiny red dots on my thighs that weren't there until after I gave birth. I'm not sure if that is related to my thyroid.

Is it possible I don't have Graves? Curious if it was too soon to tell after having a baby with the crazy hormones, plus my levothyroxine wasn't completely out of my system and I was also taking high doses of Soy based Lecithin at the time of the blood draw.

649848 tn?1534633700
Typically, we recommend that Free T4 be about mid range and Free T3 to be in the upper half to upper third of its range... that's where most of us find that we have the least hypo symptoms;  both your Free T4 and Free T3 are only at 20% of their respective ranges, which are far below the recommended levels.  

I'd say you do have Graves Disease, because one doesn't have TSI as high as yours unless they do have Graves, but that doesn't mean you're are or were hyper...  You are only hyper if your actual thyroid hormone levels are high in the range or over range and yours most certainly aren't, not to mention that most of your symptoms are those of being hypo, not hyper.

When you have, both, Hashimoto's and Graves, either one can be dominant and it appears that for you, Hashimoto's is dominant.

Soy is a goitrogen and goitrogens can block/inhibit production/absorption of thyroid hormones.  And yes, the fact that you just had a baby could have had something to do with your hormones being out of kilter.  You should ask to be tested again, and make sure they test Free T4 and Free T3, not just TSH.

It should be remembered that TSH is only a messenger hormone and does not always correlate with actual thyroid hormones.  This is a fact that many doctors seem to forget quite often.  It's also important to note that many endocrinologists specialize in diabetes and are not good thyroid doctors.

The little red dots on your thighs are most likely, what's called Petechiae.  They're just little red blood spots, caused from bleeding under the skin.  They can be caused by a number of things, including prolonged straining (such as that from vomiting, crying coughing, childbirth), certain medications, some infectious diseases, other medical conditions, diseases, injuries, etc.   Since you had a baby just before yours showed up, yours could be caused from that and may be nothing serious, but you should talk to your doctor to be sure.  
If you have both Hashimotos and Graves, how is that treated? Barb, I can't thank you enough for all of your help!
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