Aa
Aa
A
A
A
Close
12432545 tn?1425304807

re: Finding a diagnosis to begin treatment:

I feel like I have no where else to turn and I need help.

I've had 4 endocrinologists (including one from Penn and one from Cooper, two highly respected local hospitals) dismiss me with a laugh - your TSH is fine, you are fine.  Eat less, exercise more = lose weight.  Try 3x as hard post partum. Oh and here are antidepressants - 12 kinds in 10 years with no success.  Never mind that my chief issue is fatigue.  (No apnea issue at play...12 hrs a night isn't enough, necessary naps, etc.)

All this despite my symptoms: extreme fatigue, "treatment resistant" depression/anxiety, unable to lose weight, random weight gain, despite healthful eating; constipation; dry brittle hair, skin, nails; menstrual changes; body temp average 97 degrees; exercise intolerance; consistently COLD, etc.  All of this worsened post pregnancy (I had a baby at 30 so age or pregnancy?).  I don't smoke, drink or eat much, let alone meat/eggs or drink soda or even diet drinks, nor many processed foods.

I have BEGGED for testing beyond TSH for for the past 3 years.  Non-insurance internist finally did my hormone panel in early 2015 and found this:

TSH 1.09 (lowest in 13 years per available bloodwork, but never higher than 2.5)
Total T4 5.6 range 4.5-12 mcg/dL
Free T4 Index (t7) 1.6 range 1.4-3.8
Free T4 .9 range .8-1.8 nj/dL
Free T3 2.9 range 2.3-4.2 pg/mL
Total T3 101 range 76-181 ng/dL
T3 uptake 29 range 22-35%
IGF I, LC/MS 207 range 53-331 ng/mL
Total Cortisol 6.5 (no range noted on Quest paperwork)  [Once had a 3.5 AM cortisol serum when range should have been 8-12 at that early time of day; dismissed by previous private practice endo as a fluke]
LDL Cholesterol in range at 118 (under 130 recommended)
Hemoglobin A1c 5.6
Hormone levels all look okay according to internist.

***Internist also ordered a thyroid ultrasound.  Found a 4 mm nodule without calcification on right plus enlarged 27 mm lymph node on left side.***

Internist ordered me to endocrinologist for nodule biopsy.  Endocrinologist consulted about nodule urged a wait and see - another ultrasound in two years - and told me flat out that I am not hypothyroid.  Also questioned the internist's qualifications.  Laughed at the blood tests she ordered for me, what she recommended as treatment, etc.  endocrinologist suggested, albeit in a concerned way, that I was doctor shopping to hear what I wanted to hear, and told me that pursuing thyroid hormone would lead to destroying my bones and my heart. My symptoms might just seem like they fit perfectly, etc.

My other issue is that the internist requires a year long $4k cash contract to treat - no insurance accepted.  She wants to enroll me in her weight loss clinic and mentioned hcg diet with injections...I'm not wild about the structure of her office and it's raising red flags.  I didn't go for weight loss (I am about 45 lbs overweight but still a size 12 with good stats - my overall health, stamina and mental health is more important to me right now) But so far she's been the only one to test T3 & T4 and actually say it's hypothyroidism.  Between my discomfort with that and the endocrinologist's certainty that I was not hypo...rock and hard place.  

So main questions:

1.  Do you believe I am hypothyroid based on my blood work?
2.  Do you think I should wait and see about the nodule on thyroid and enlarged lymph node?
Best Answer
649848 tn?1534633700
COMMUNITY LEADER
Yes, I think you're hypo and yes, I think you can probably wait and see about the nodule, but I think 2 yrs is too long - not more than 1 yr and probably  only 6 months...

Both your FT3 and FT4 are on the floor of the ranges, plus your symptoms are screaming hypo.  The internist is on the right track, but you're right to be leery of her practice, as it sounds like she's on a money making scheme that will surely keep you broke.  There are doctors out there that will treat you; you just have to find them.

Since we know that your FT levels are very low, indicating low thyroid hormone output, and you have a nodule, I'd recommend that you get antibody testing to determine if you have Hashimoto's Thyroiditis.  Hashimoto's is an autoimmune disease, in which, for some reason, the body sees the thyroid as foreign and produces antibodies to destroy it.  

The antibody tests you need are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb).  You need them both, as some of us have one or the other, some have both.  If you can't get a doctor to order them, we can tell you where to order them online without a doctor's order.

If you're positive for the antibodies, you can often get treatment, when you can't otherwise...  Nodules are common with Hashimoto's and thyroid destruction would explain the low FT levels.
2 Responses
Sort by: Helpful Oldest Newest
12432545 tn?1425304807
Barb, I could KISS you for your informative reply.  Thank you SO much.

1.  Antibodies did get tested by my primary doctor when I begged her to check them last year, I'm sorry I neglected to mention - both are below:

THYROID PEROXIDASE AND THYROGLOBULIN ANTIBODIES
THYROGLOBULIN ANTIBODIES <1    range: < or = 1 IU/mL

THYROID PEROXIDASE ANTIBODIES <1    range: <9 IU/mL

2.  I will check on the nodule again in 6 months to a year - I feel better about that course of action than 2 years, for sure.

3.  I agree with your assessment of the internist.  It's taken so long to find someone that would listen, it was a heartbreak to find out after two $300 appointments that she won't give me prescriptions for hypothyroid unless I sign a $4k contract with her!  

I will continue to look for a doctor that will help me based on affirmation that this isn't all in my head.  Thank you so much.  Megan
Helpful - 0
Have an Answer?

You are reading content posted in the Thyroid Disorders Community

Top Thyroid Answerers
649848 tn?1534633700
FL
Avatar universal
MI
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.