# Hashimotos with normal TSH



## Sazco (Jan 7, 2013)

Hi everyone. I have been sick for quite a few years and getting worse. I was unable to have my milk come in with either of my pregnancies, I got shingles during my second pregnancy, started getting ocular migraines, started getting my periods every 2 weeks and very heavy and then not again for 2 months, etc. My hair started falling out and I started becoming exhausted and gaining a lot of weight. I am also very very bloated. I have bad pain in the top of my feet and top of my hands as well as wrists and joints. My cholesterol skyrocketed in just 8 months. Due to these symptoms my doctor tested my levels as my Grandma and Mom are both hypo. My TSH came back at 3.5 which he said is normal. I told him that my mom had Hashimoto so he tested me for anitbodies and he said that the results came back and that they are very high and I have Hashimoto. He said he was surprised because my TSH levels were ok. He sent me to an Endo who tried to tell me I have PCOS and put me on Metformin. She would not treat Hashis because my levels were ok. She said all of my symptoms could be tied to my recent weight gain and basically told me to exercise. I would LOVE to have the energy to do daily chores much less exercise:/ LoL So that appointment was a huge upset for me. I looked it up online and do not feel that I have PCOS. I have 2 children and no excess facial hair. I finally got a referral to another Endo. The next closest one is 90 miles away. My appointment is next week (I have been waiting 5 months!) and I would love any info or advice before I go. I have been diagnosed for 8 months now and keep getting worse and worse. I literally have NO energy and I could just lay in bed all day. It is awful. I do not want to be shrugged off like at the previous appointment. My hands hurt so bad, my neck, my back. I am so tried of being in pain, exhausted, and feeling like a ditzy air head. I can barely remember what I am doing half of the time. It's so frustrating. I lose my words mid sentence and I am very forgetful. Thanks in advance!


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## sjmjuly (Mar 23, 2012)

My TSH was 3.5 too - which is in "range". I felt like total crap. Most doctors in my opinion don't know how to treat hashi's and they all try and put us all in the same box. A TSH of 3.5 is too high for hashi people. I feel best when mine is 1 or 2 at the most. Don't give up and DON'T listen to ANY doctor that only runs a TSH test. You need your Free's (T3 & T4) tested as well. I ended up going to a naturopath who did all the right tests and prescribed Naturethroid. Dosing is a little tricky, but I feel the best I have felt in years. 
Don't give up and educate yourself on the disease. Knowledge is power and find a doctor that will listen!


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## lexi731 (Dec 6, 2012)

My TSH was borderline when I was first tested but had high antibodies, like you. They put me on a low dose of medication to see if it helped but when I still felt terrible, my endocrinologist told me that he thought I had sleep apnea because I'm overweight. Well, I'm overweight because of my thyroid and there's no way I have sleep apnea because I had sinus surgery two years ago. After he blamed sleep apnea for my tiredness, weight gain, etc., I started looking for a new doctor. Anyone that tells you that you're wrong for feeling the way you do should be fired from treating you. They are not in your body and can't feel what you feel.


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## Jezahb (May 17, 2012)

Apparently I am far from alone in hating Endo's and there tendency to blame literally EVERY symptom on weight.

Anyways, in my personal experience TSH is not a great indicator of how hypo you are. Also, from what I have read Hashi's can make your TSH bounce around a lot in the beginning stages when your body first starts attacking it. I know for me, I started to lose hair and gain weight about a year before I was diagnosed because at that point my TSH was tested as 1.6, and then a year later it was 6.3. So one TSH test does not tell the entire story, I would ask this new doc to retest your TSH and your free's tested as well. If you do get put on medication, I personally suggest asking for Armour as from what I have seen Synthroid is a bit of a crap med for most since it doesn't supplement T3. I know it did nothing for me but lower my TSH and make me break out all over.

Good luck!


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## lexi731 (Dec 6, 2012)

Jezahb said:


> Apparently I am far from alone in hating Endo's and there tendency to blame literally EVERY symptom on weight.


Exactly! Every time they do this, I try to explain that I was not overweight before the thyroid started acting up, and I would REALLY like to go back to that, thankyouverymuch.


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## RandomUserAZ (Nov 21, 2012)

I had similar numbers to you. My TSH was 3.23 and my antibodies were over 600. That was enough to be diagnosed with probable Hashimotos.

My Endo said that medication was not required since my TSH was still 'in range', but gave me the option if I chose to, which I did. After 2 months, my TSH has already dropped down to 1.38.

I've also read that they've lowered the upper limit from 5.0 to 3.0, but not everyone agrees.


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## Andros (Aug 26, 2009)

Sazco said:


> Hi everyone. I have been sick for quite a few years and getting worse. I was unable to have my milk come in with either of my pregnancies, I got shingles during my second pregnancy, started getting ocular migraines, started getting my periods every 2 weeks and very heavy and then not again for 2 months, etc. My hair started falling out and I started becoming exhausted and gaining a lot of weight. I am also very very bloated. I have bad pain in the top of my feet and top of my hands as well as wrists and joints. My cholesterol skyrocketed in just 8 months. Due to these symptoms my doctor tested my levels as my Grandma and Mom are both hypo. My TSH came back at 3.5 which he said is normal. I told him that my mom had Hashimoto so he tested me for anitbodies and he said that the results came back and that they are very high and I have Hashimoto. He said he was surprised because my TSH levels were ok. He sent me to an Endo who tried to tell me I have PCOS and put me on Metformin. She would not treat Hashis because my levels were ok. She said all of my symptoms could be tied to my recent weight gain and basically told me to exercise. I would LOVE to have the energy to do daily chores much less exercise:/ LoL So that appointment was a huge upset for me. I looked it up online and do not feel that I have PCOS. I have 2 children and no excess facial hair. I finally got a referral to another Endo. The next closest one is 90 miles away. My appointment is next week (I have been waiting 5 months!) and I would love any info or advice before I go. I have been diagnosed for 8 months now and keep getting worse and worse. I literally have NO energy and I could just lay in bed all day. It is awful. I do not want to be shrugged off like at the previous appointment. My hands hurt so bad, my neck, my back. I am so tried of being in pain, exhausted, and feeling like a ditzy air head. I can barely remember what I am doing half of the time. It's so frustrating. I lose my words mid sentence and I am very forgetful. Thanks in advance!


Aside from the TPO, these other tests would be beneficial.

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

How high is your TPO? Also, your TSH is too high for me; that much I know. Something is going on and the key will be to find the right doctor to address that.


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## Sazco (Jan 7, 2013)

Thanks for your responses! I am not sure what my other levels were. I will try and find out at my appointment. I just want to feel like I am not half asleep all of the time. Nice to have this forum to read about other people's stories! Thanks again.


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## surge (Aug 15, 2012)

I too feel a slight bit of gurgling rage when I think of my endo saying, "well I don't think we can blame x on the thyroid. There can be a lot of reasons why women have heart palpitations/hair loss/high blood pressure/hand tremors/leg pain/etc.".

I wasn't overweight, so my endo really zeroed in on anxiety. Which I had plenty of because I felt like total crap all the time, it's true.

I'm sorry for your bad experience. For the new endo appointment. Ask for the tsh/ft3/ft4 test other people hear recommended. Invoke the word, "baseline" if need be. Even my endo who doesn't believe in using t3 for dosing believes in getting a baseline in the first several visits. Also ask how comfortable the new endo is in treating symptoms, not just numbers. If you're curious about bio-identical thyroid replacement, certainly ask about how s/he feels about prescribing armour/unithroid/naturthroid, etc.

Also ask why she thinks you have so many symptoms even though your tsh is technically normal and what is his/her general protocol in treating hashis? How do they typically proceed v. how has s/he treated patients in the past who didn't respond to T4-only approach? I'd definitely ask this last question if I was interviewing a new endo b/c in my experience and from a lot of what I've read, hashis acts differently in every body, and while a lot of people respond quickly and positively to a little t4 therapy, many will not be so lucky.


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## allowingtoo (Mar 31, 2012)

Have your B12 levels tested also to see if you are anemic. Metformin can affect B12 absorption and that can lead to anemia. (I really wish I could take Metformin along with my Topamax!! but I can't because of my liver. Combined, they are supposed to work really well for weight loss)

Are you depressed?

{{Raising hand}} I am one of those that feel better when my TSH numbers are in the 1 -2 range. It's really hard to convince my Dr (at first) to treat me that way though!


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## Andros (Aug 26, 2009)

Sazco said:


> Hi everyone. I have been sick for quite a few years and getting worse. I was unable to have my milk come in with either of my pregnancies, I got shingles during my second pregnancy, started getting ocular migraines, started getting my periods every 2 weeks and very heavy and then not again for 2 months, etc. My hair started falling out and I started becoming exhausted and gaining a lot of weight. I am also very very bloated. I have bad pain in the top of my feet and top of my hands as well as wrists and joints. My cholesterol skyrocketed in just 8 months. Due to these symptoms my doctor tested my levels as my Grandma and Mom are both hypo. My TSH came back at 3.5 which he said is normal. I told him that my mom had Hashimoto so he tested me for anitbodies and he said that the results came back and that they are very high and I have Hashimoto. He said he was surprised because my TSH levels were ok. He sent me to an Endo who tried to tell me I have PCOS and put me on Metformin. She would not treat Hashis because my levels were ok. She said all of my symptoms could be tied to my recent weight gain and basically told me to exercise. I would LOVE to have the energy to do daily chores much less exercise:/ LoL So that appointment was a huge upset for me. I looked it up online and do not feel that I have PCOS. I have 2 children and no excess facial hair. I finally got a referral to another Endo. The next closest one is 90 miles away. My appointment is next week (I have been waiting 5 months!) and I would love any info or advice before I go. I have been diagnosed for 8 months now and keep getting worse and worse. I literally have NO energy and I could just lay in bed all day. It is awful. I do not want to be shrugged off like at the previous appointment. My hands hurt so bad, my neck, my back. I am so tried of being in pain, exhausted, and feeling like a ditzy air head. I can barely remember what I am doing half of the time. It's so frustrating. I lose my words mid sentence and I am very forgetful. Thanks in advance!


Unfortunately, you need some antibodies' tests because TSH alone is not an indicator of what is really going on and by the way, I think your TSH is too high. It may be within the range but that does not mean it is at the right place for you.

Here is some info.................

TPO Ab
Mild to moderately elevated levels of thyroid antibodies may be found in a variety of thyroid and autoimmune disorders, such as thyroid cancer, Type 1 diabetes, rheumatoid arthritis, pernicious anemia, and autoimmune collagen vascular diseases. Significantly increased concentrations most frequently indicate thyroid autoimmune diseases such as Hashimoto thyroiditis and Graves disease.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

Dr. Mercola (FREES)
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.


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## Sazco (Jan 7, 2013)

Thanks for all of your replies. I had my appt with my new Dr today. My husband, kids, and I got a hotel for the weekend due to the snow. But I was not going to miss this appt even if we are in a blizzard! The Dr was AMAZING. She retested all of my levels. My antibodies are very high (higher than my last appt in October) and my TSH went up to 6 since my last appt also. So she prescribed me on 25 mcg of LEVOXYL. I hope I start feeling "alive" again soon!


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## piggley (Sep 15, 2012)

Sazco said:


> Thanks for all of your replies. I had my appt with my new Dr today. My husband, kids, and I got a hotel for the weekend due to the snow. But I was not going to miss this appt even if we are in a blizzard! The Dr was AMAZING. She retested all of my levels. My antibodies are very high (higher than my last appt in October) and my TSH went up to 6 since my last appt also. So she prescribed me on 25 mcg of LEVOXYL. I hope I start feeling "alive" again soon!


Wow great result Sazco, 
What a difference it makes when a Dr LISTENS! as opposed to treating us like raving hypochrondiacs..hope you feel better very soon.


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## Sazco (Jan 7, 2013)

piggley said:


> Wow great result Sazco,
> What a difference it makes when a Dr LISTENS! as opposed to treating us like raving hypochrondiacs..hope you feel better very soon.


Thank you! Yes this appointment was night and day from my 1st one. I was so nervous about how it was going to go and I feel a huge weight off of my shoulders.


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