# Pushed hyper, but still feel hypo



## kgriess (Jun 30, 2010)

It's been a year since I was initially diagnosed with subclinical hypothyroidism. They also initially found a nodule that was biopsied with inconclusive results and with 2 subsequent ultrasounds since they have found another nodule and no change in the one that was biopsied.

Meanwhile, because of the nodule and not knowing for sure if it is cancerous or not, my doctor wanted to push me to the hyper side of the spectrum so my thyroid isn't producing much and therefore stimulating the nodule to grow.

I went in to see him a couple of weeks ago because some of my hypo symptoms came back such as feeling tired, brain-fogged, irritable, having achy muscles (back and legs especially) and gaining back the weight I had lost.

Here were my labs (with lab normal ranges in parens):

TSH: .3 (.4 - 4.5)
FT4: 1.2 (.8 - 1.8)
FT3: 250 (230 - 420)

My endo didn't have the results when I was there, but based on my symptoms as described to him, he didn't act like he thought it was my thyroid and even asked me if I "obsess over my health."

Only when I don't feel good! (time for a new doc?)

The spacey/brain fog/irritability is the worst part and there's no rhyme or reason to it. Some days are OK, some days it's after lunch, some days it's early evening...

I'm currently talking generic synthroid 25mcg 2 days a week and 50mcg 5 days...so it's not a ton, but it's enough.

I was tested for iron last year and it wasn't low.

If you have any thoughts...I'd love to hear them.


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## Andros (Aug 26, 2009)

kgriess said:


> It's been a year since I was initially diagnosed with subclinical hypothyroidism. They also initially found a nodule that was biopsied with inconclusive results and with 2 subsequent ultrasounds since they have found another nodule and no change in the one that was biopsied.
> 
> Meanwhile, because of the nodule and not knowing for sure if it is cancerous or not, my doctor wanted to push me to the hyper side of the spectrum so my thyroid isn't producing much and therefore stimulating the nodule to grow.
> 
> ...


My thoughts are that you are horribly undermedicated.

Free T3 is way low! Mid-range of the range given is 325. Most of us need our FT3 at the 75% range of the range given. This is your active hormone.

FT4 is also below the 1.3 mid-range. FT4 is what converts to FT3.

It is most definitely time for a new doc. Your current doc does not understand lab results. At this point, getting your med right has little or nothing to do with where your TSH is at.

You doctor has you in a very very bad place and you cannot be feeling well at all. That is what the titration process is for. Each titration "usually" takes you to a level of different annoying symptoms "until" you reach the euthyroid state which is where you feel great.

This doctor is barely keeping you functional.

That is my humble opinion.


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## kgriess (Jun 30, 2010)

Thanks, Andros.

The generic synthroid I'm taking is T4, though, right? How do I increase my FT4 levels without lowering my TSH and how do I increase my FT3 levels? Do I need to take T3 in addition to T4?

I think it might be time for a whole new team of doctors...from my primary, to my specialists.

I really appreciate your response and dedication to this board!

I am not an advocate of generic drugs. They are not the same. This is the law. You cannot get a patent on a drug that is already patented. There has to be a variation to get a patent on the generic and a cohort has to show it can do the same thing. I don't believe it. I could go on but it would require chapters.

Okay, firstly the T4 has to be titrated (increased) in small increments every 8 weeks based on lab results and clinical evaluation. If at a certain point, the FREE T4 is building up but the FREE T3 is not, one may come to the conclusion that the patient is not converting well and consider adding T3 (Cytomel) to the mix. Or switching to a dessicated porcine product. (T4 and T3)

Right now, you don't even have enough T4. You really are undermedicated.

http://www.thyroid-info.com/articles/freet3woliner.htm


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## Andros (Aug 26, 2009)

kgriess said:


> Thanks, Andros.
> 
> The generic synthroid I'm taking is T4, though, right? How do I increase my FT4 levels without lowering my TSH and how do I increase my FT3 levels? Do I need to take T3 in addition to T4?
> 
> ...


I forgot to thank you for your very kind words. I love it if I can help someone; I truly do!


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## Lovlkn (Dec 20, 2009)

kgriess said:


> Thanks, Andros.
> 
> The generic synthroid I'm taking is T4, though, right? How do I increase my FT4 levels without lowering my TSH and how do I increase my FT3 levels? Do I need to take T3 in addition to T4?
> 
> ...


I agree with Andros that you are under medicated and closer to hypo. What antibodies tests have they run on you? You have barely any TSH so you most likely have more going on than just hypothyroidism and likely stimulating antibodies which is suppressing your TSH


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## lavender (Jul 13, 2010)

You look undermedicated to me. If T4 meds like synthroid work for you, your body will start to convert T4 into T3. If not, you may need to take something with T3 in it, which would either mean adding cytomel, which is synthetic T3, to your T4 therapy; or taking a medication that includes both T3 and T4, such as Armour, which is made from pig thyroid. Basically, it's trial and error. I tried synthroid out for a while until I was able to see from labs that my body was making no T3 whatsoever despite adequate T4 levels. Then I switched to Armour.


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## kgriess (Jun 30, 2010)

OK, you are all going to kill me for this, but I had my labs wrong. I wrote them down and used the ranges from a previous fax they had sent me since I always go to the same place and assumed they used the same lab each time.

It is the same lab, but here are the numbers:

TSH: 3.01 (.4 - 4.5)
FT4: 1.2 (.8 - 1.8)
FT3: 2.5 (2.3 - 4.2)

I think I misinterpreted the TSH in my head because in January when I was tested, it was at .39. He wanted it around .4 because of the nodules and wanting to keep me more "hyper". So, 3 months later, on the same dosage, I never expected it to go so far the opposite direction as it apparently went. No wonder I am feeling so HYPO!

Now my question is, why? Why did it do this? I had antibody tests initially a year ago and they were negative:

Thyroglobulin antibodies <20 (<20 IU/ml)
Thyroid Peroxidase Antibodies <10 (<35 IU/ml)

How could it swing this far? I am really perplexed. Since I started meds a year ago, it has always gone down.

I just talked to the doctor and he is saying there's variability in the tests and in your body from day to day. Since everything is in the normal range, he thinks there's something else wrong and told me to go see my primary doc to discuss with her. I asked about FT3 being in the lower end and he didn't act like it was an issue since they are all "normal" and you don't just look at one number. He also said that since I was "subclinical" that it points to something else since some folks aren't even treated for subclinical.

I just want to cry. I've never felt this way before and felt so much better initially after starting the meds. I just feel like this is such a big step backwards.


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## Andros (Aug 26, 2009)

kgriess said:


> OK, you are all going to kill me for this, but I had my labs wrong. I wrote them down and used the ranges from a previous fax they had sent me since I always go to the same place and assumed they used the same lab each time.
> 
> It is the same lab, but here are the numbers:
> 
> ...


LOL!! We don't kill off our posters!!

I thought something was wrong w/ the TSH and was going to inquire but thought better of it. I am not a TSH worshipper anyway.

Same opinion still stands. You would do well to find a doctor who understands how to titrate your meds and get your numbers down and up where they should be.

And you do have autoimmune. While the results are below range, they are still there. And antibodies can and will fluctuate wildly. Especially if you cannot find a doc to get your numbers right.

You want to shoot for TSH @ 1.0 or less and the FREES somewhere above the mid-range of the lab given by your range. About 75% in the range. That is what works for most of us with very few exceptions.


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## kgriess (Jun 30, 2010)

Thanks again, Andros.

This doctor is making me feel like I am losing my mind; like it can't possibly be my thyroid. He's convinced it's something else, obviously, so I guess I will find a new doc. I did make an appointment for a physical anyway, since I'm due, and then I can find out what other endos are available in their group. I'm on an HMO, unfortunately, so my doctor choices are not limitless.

On another note, I also have ulcerative colitis - diagnosed 4 years ago - and that is autoimmune. So, I would have guessed autoimmune as well with my thyroid since once you have one autoimmune disease, you tend to develop others, or so I'm told. I'm sure you know what I'm talking about.

I'm trying to hang in there, but I feel weepy today and achy. That's not in my head!!


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## Andros (Aug 26, 2009)

kgriess said:


> Thanks again, Andros.
> 
> This doctor is making me feel like I am losing my mind; like it can't possibly be my thyroid. He's convinced it's something else, obviously, so I guess I will find a new doc. I did make an appointment for a physical anyway, since I'm due, and then I can find out what other endos are available in their group. I'm on an HMO, unfortunately, so my doctor choices are not limitless.
> 
> ...


That something else happens to be that he "doesn't get it!" I don't say this in a mean spirit. What is, is and what ain't, ain't.

Yes; most of us do in fact have more than one thing going on; even if we don't know it yet. It is all so insideous.

I have paid out of pocket all my life for my health care and if you can find the funds to do so (provided you find a good doctor), try to budget it in. Make sure you tell them you are self-pay. They usually cut the fee a bit. We are not wealthy; we just responsibly put money aside for such emergencies.

You don't necessarily need an Endo. Any doc will do as long as he/she understands the "basics" and also that he/she wants to help you to wellness.


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## Lovlkn (Dec 20, 2009)

I agree that you don't need an endo to treat you -find a doctor willing to listen to your symptoms which are hypo and raise your meds a bit. I see a DO now vs an MD and have been finally properly medicated for 18 months now.

The tests you want run are a FT-4 a FT-3 and lastly a TSH and you should dose by your FT tests.


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## usmc4myson (Sep 26, 2010)

Kgriess,
I feel your frustration. I've been exactly where you are. For 12 years. I FINALLY found a good doctor and we are now in the process of figuring me out! I thought it would be great to see an endo down in center city Philly, at one of the premium universities. I thought he would be curious about why I continued to feel terrible when my levels were normal. I was wrong. When I tried to tell him that my temperatures were always very low, he asked me why I was even taking my temp so often! Made me feel like a hypochondriac. I sat there dazed and disappointed like you would not believe. I had to compose myself before I left his office, because I was in tears. Tears of feeling like nothing I said mattered to him. I highly urge you NOT to go to an endo. For the most part, they do not want to be bothered with the likes of you and I.

My new doctor is wonderful. I am pinching myself wondering if the goodness will wear off. I need to re-learn how to trust myself and my doctor. I have been brushed off and discounted for so many years, I am seriously not used to being listened to and cared about!

I found my new doctor by doing a google search of Integrative Medical doctors in PA. 
She is an MD who is board certified in Integrative Medicine. I was also given the suggestion to go to different pharmacies in my area and ask the pharmacist which local doctors are prescribing alternative meds like Armour. Those doctors will most likely treat YOU and not just your lab ranges. You might not need to switch to Armour, but just having a doctor who is open to treating you based on how you feel is extremely important. I was never tested for certain things, never offered any other med but synthroid, and was shipped off to see at least 10 specialists over the last 12 years...all the while I was surviving, not living. 12 years is gone. Please don't let yourself go down the same road. Take action NOW for your own sake. Don't give up until you find the right doctor for you. You should not be feeling the way you do, and yes, you can feel better with the right treatment!!! There is hope! Just grab onto it and do not let go until you are truly being cared for by your physician.

Keep us updated on your quest!

~Amy
(a 42 year old who has been there, but now sees a light at the end of the tunnel)


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