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Old 03-23-2012, 03:17 PM   #1
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High Free T4, normal TSH question

History of hyperthyroidism in my 20s, hypothyroidism starting in my late 30s. Have been on T4 (100 mcg Levoxyl) ever since. Last year, in addition to overwhelming fatigue and other symptoms, my hair started falling out - I have probably lost about a 1/3 of my hair at this point. Every time I brought up my symptoms and asked if it could be thyroid, my PCP ignored me. The last test he did (in August) showed a TSH of 2.1 (range .4- 4.0) and a Free T4 high at 1.4 (range is .6 - 1.1).

Out of desperation, thinking it was a peri-menopausal issue (I'm 49), I went to a GYN. She said ďnope, not hormonal but your TSH is on the high side for someone with hypothyroidism.Ē She increased my dose to 112 mcg of Levoxyl. Six weeks later my TSH hadnít budged (at 2.0 now - that's all she tested). So she ups my dose to 125 mcg. Within 2 weeks I started having panic attacks. Initially, I didn't make the connection between the thyroid medication and the anxiety issue because 2 weeks prior to starting the 125mcg I had a hysterectomy with ovary removal (not elective) and thought it might be related to the surgery and/or trying to get my estrogen replacement levels right. My GYN thought it might be a post-surgical reaction.

So for six weeks, I feel really, really good (high energy, no more cravings for sugar, appetite on the low side, great mood, hair loss stopped, better than I've felt in years) except for the panic attacks (almost always in the evenings). When my TSH was tested again at six weeks it had now dropped to .4 . She didn't test Free T4 or T3. The GYN writes me a note that this is great but by this point (8 weeks on 125mcg) I had started to feel like itís not so great as I now had racing thoughts and no appetite in addition to the anxiety. I was not surprised that my TSH has fallen almost below the normal range. This is exactly how I felt when I was diagnosed with hyperthyroidism in my 20s. Fortunately, I know what hyperthyroidism feels like and this seems to going in that direction.

So, I decided to drop back to the 112 mcg last week and all those symptoms went away plus I am now hungry all the time and feeling fatigued! Argh!!! I really think I need to be on a dose between the 112mcg and 125 mcg.

Here's my question: Why would my Free T4 be high but the TSH be mid-range? That seems out of the norm from what I've read. Interestingly, the Free T4 was on the first lab report but when my GYN ran the same report, out of the same lab system, there was no Free T4 test results listed.

I see my PCP next week. There is little chance he is going to be in agreement with the increased Levoxyl dose and I kind of doubt I will be able to get a referral to an endocrinologist (they don't take self-referrals in my town). My GYN seems willing to work with me on the thyroid issue but is obviously not an expert. I might be able to get a referral out of her. I was thinking about trying to alternate the 112mcg and 125 mcg and seeing how that makes me feel. If I feel good on that I would then continue to work with my GYN. If not, I will see if I can't either get a referral from my GYN or try find someone outside my town to work with on this issue. I feel like I'm very close to feeling good but have gone from under-medicated at 100-112mcg to over-medicated at 125mcg.

 
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Old 03-23-2012, 04:33 PM   #2
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Re: High Free T4, normal TSH question

Welcome!

Sorry for the reason you're here but, glad you found us.

Alternating the 112mg/125mg doses as you mentioned might be all you need to feel well. I would certainly go that route if your GYN is willing. I hope things are that simple.

If not, please check in with us again and we can give you additional information that will help you along the path to wellness.

If you haven't done so already, I suggest you read "Thyroid for Dummies". The endo-author confirms that the FreeT4 and FreeT3 tests are the best tests to evaluate thyroid function.

Perhaps you can use this information to convince your GYN to run these tests. Then you will know for sure if the new dosing regimen can be expected to meet your body's needs.

I wouldn't be in a rush to see an endo - they are often the worst at treating thyroid disease. It's more important to get the right labs and to have a doctor that is willing to work with you.
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Old 03-23-2012, 04:40 PM   #3
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Re: High Free T4, normal TSH question

Quote:
Originally Posted by MissJuneBug View Post
Here's my question: Why would my Free T4 be high but the TSH be mid-range?
I realized I forgot to answer this question.

Your GYN was onto something when she said your mid-range TSH was high.....it's high for someone taking Levoxyl.

People who are optimally medicated on meds like Levoxyl will have TSH 1.0 or lower.

Since your FreeT4 level was high and your TSH was higher than would be expected, there's a chance your FreeT3 level is too low.

This could explain the mixture of hyper/hypo symptoms you have.

A too-low FreeT3 level can be remedied by the addition of Cytomel (T3 med).

This once again brings us back to the need for both the FreeT4 and FreeT3 tests.
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Last edited by sammy64; 03-23-2012 at 04:41 PM.

 
Old 03-23-2012, 05:10 PM   #4
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Re: High Free T4, normal TSH question

Thanks Sammy. That helps a lot. I will definitely get the book.

I agree on the endo issue, which is why I haven't pushed it. The two groups who are in town have been here forever and are probably very conventional. I feel fortunate that my GYN is willing to work with me on this. I doubt though she prescribes much Cytomel. She had to look up the dosage for Levoxyl. I think she tends to use Synthroid.

 
Old 04-07-2012, 07:39 AM   #5
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Re: High Free T4, normal TSH question

I went into the dr last week due to weight loss. Thyroid tests showed normal TSH and high T-4. I was referred to an endocrinologist. The endocrinologist is repeating the tests to ensure there is not a laboratory error. I hear back Monday. If there is no lab error (which would be very unlikely to be an error) then I will be scheduled for an MRI to see if there is a tumor on my pituitary gland. He said that would be the most common cause, and thus the first to investigate and/or rule out.

 
Old 04-07-2012, 03:26 PM   #6
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Re: High Free T4, normal TSH question

Thanks for posting that. Please let us know if the MRI turns up anything.

 
Old 04-10-2012, 05:12 PM   #7
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Re: High Free T4, normal TSH question

So, yesterday I found out that the second test came back that my TSH and T4 levels were completely different than the first test (within normal range according to endo). But my Vitamin D was low so they told me to take Vitamin D and recheck in 2 months.

So, now I think I need a 3rd test?? Both tests were done by the exact same laboratory. My primary doctor told me I could just wait until May 3rd when I have an appointment with a different doctor for something else because they'll be doing bloodwork.

I'm so worried, though. I'm 5'8" tall and keep losing weight. I'm down to about 118 pounds, the last 10 or so pounds which I have lost in the last 3 months (the rest was gradual over a few years). I eat like a cow, typical daily intake:
- 2 egg omelette with cheese or fast food meal for breakfast
- snack: piece of cheese and crackers
- lunch: sandwich and chips or fries
- snack: chips or granola bar
- dinner: regular dinner
- snack: whatever, if I'm up late I might make a pizza an can easily eat close to a whole one if its a Totinos or a half one if its a Tombstone

Yes, I know I need to eat more fruits and veggies . For fluids I drink soda (way too much soda lol). Diet soda. And I love sweets, but I try not to eat too many since they're empty calories but usually I'll eat a cookie or candy or something sweet during the day.

I feel great. My energy level is fine. I have other symptoms of hyperthyroidism but all of them could also be attributable to other things because to be irritable anxious and insomnia is normal for me.

I should note they took my cholesterol test and wanted to frame it and I didn't realize I was supposed to fast b/c noone told me and I had fast food that morning: which I understand cholesterol tests to be a big indicator of weight loss as well.

In any event, my next appointment on May 3rd is not with an endocrinologist but he's a good doctor so hopefully he will be able to point me in a good direction and I can keep eating enough that I don't lose any critical muscle (you can see every bone in my body and I have no breast tissue or butt padding left).

I guess feeling healthy is most important as long as I can keep from losing more weight while they figure out what on earth is wrong with me.

Test 1:
- PCP said TSH was low & T4 was high
- Endo said TSH was normal and T4 was high
TSH tested at 0.63 in first test
Test 2:
- Endo said TSH was normal and T4 was normal

I'm a 40 year old female. Anyone else has thoughts shoot 'em my way please.

 
Old 04-11-2012, 10:37 AM   #8
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Re: High Free T4, normal TSH question

Quote:
Originally Posted by lizrang View Post
Test 1:
- PCP said TSH was low & T4 was high
- Endo said TSH was normal and T4 was high
TSH tested at 0.63 in first test
Test 2:
- Endo said TSH was normal and T4 was normal
Find out what the results were exactly (and reference ranges for them) and post them here for us to take a look and comment better - "high", "low" or "normal" doesn't say much in thyroid world

 
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