# New here: Just diagnosed with Hashis



## Tiff (Jan 27, 2010)

First of all, I want to say how thankful I am to have found this board! I've been lingering for a few days while researching thyroid diseases and am amazed at the knowledge here. I'd like to share my "story" and ask a couple of questions if I may.

After the birth of my son more than 10 years ago, I noticed a lump in my neck. My mom and grandmother both have hypothyroidism and suggested that I be checked. My levels were on the low end of the normal range. An ultrasound was done and was found to be clear. I was put on a low dose of levoxyl to reduce the size of my goiter. Shortly after, I became pregnant with my 2nd child. My thyroid levels were monitored and I was told that I didn't need to be on meds any more. After another 2 children and lots of bloodwork, I still had a goiter. I went back to the dr. faithfully and insisted that something wasn't right. Each time my bloodwork came back normal. I found a new dr....finally. About 18 months ago I had them draw blood to check my thyroid. Again...normal but was told that if I felt like there was something they were missing to follow my gut. So....last October I went back and asked them to do a full panel. Again the levels were normal but the dr. did notice that my thyroid was enlarged. He suggested an ultrasound and low and belhold they found that my thyroid was "grossly enlarged" and had 6 nodules, 2 of which were 1 inch in diameter. He referred me to an ENT dr. who performed a biopsy and a blood test for Hashimoto's.

I got the call today that the biopsy was negative but I definitely had Hashimoto's. He said that my antibody levels were the highest he had ever seen.....around 573. He is putting me on a low dose of levothyroxin (?) and wants to see me every 6 months.

Does this sound right? And what exactly does the 573 mean? What is normal?

Another concern I had was that I have been experiencing chest pains/feeling like my heart is going to beat out of my chest. I asked the ENT dr about it and he said that it had nothing to do with the Hashimoto's. This seems to be contrary to a lot of the things I've read online.

I would love to have your input. Thank you!

Tiff


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## Andros (Aug 26, 2009)

Tiff said:


> First of all, I want to say how thankful I am to have found this board! I've been lingering for a few days while researching thyroid diseases and am amazed at the knowledge here. I'd like to share my "story" and ask a couple of questions if I may.
> 
> After the birth of my son more than 10 years ago, I noticed a lump in my neck. My mom and grandmother both have hypothyroidism and suggested that I be checked. My levels were on the low end of the normal range. An ultrasound was done and was found to be clear. I was put on a low dose of levoxyl to reduce the size of my goiter. Shortly after, I became pregnant with my 2nd child. My thyroid levels were monitored and I was told that I didn't need to be on meds any more. After another 2 children and lots of bloodwork, I still had a goiter. I went back to the dr. faithfully and insisted that something wasn't right. Each time my bloodwork came back normal. I found a new dr....finally. About 18 months ago I had them draw blood to check my thyroid. Again...normal but was told that if I felt like there was something they were missing to follow my gut. So....last October I went back and asked them to do a full panel. Again the levels were normal but the dr. did notice that my thyroid was enlarged. He suggested an ultrasound and low and belhold they found that my thyroid was "grossly enlarged" and had 6 nodules, 2 of which were 1 inch in diameter. He referred me to an ENT dr. who performed a biopsy and a blood test for Hashimoto's.
> 
> ...


Hello, Tiff!! Welcome to the board. Only 2 things don't sound right to me. Now that you are on thyroxine replacement, you should be having labs every 8 weeks and your thyroxine replacement should be titrated (either up or down depending) and also, yes.................hypothyroid often causes arrhythmia of the heart. I am not saying that is what it is because I am not a doctor but it "seems" like it is. Once you are stable (euthyroid) on your thyroxine, that should stop.

573 is high for TPO but we all have seen much much higher. Hopefully they will come down with proper adjustement of your thyroxine replacement.


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## Tiff (Jan 27, 2010)

Thanks for the reply Andros. Do I need to contact my dr. and request more frequent labs?


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## Andros (Aug 26, 2009)

Tiff said:


> Thanks for the reply Andros. Do I need to contact my dr. and request more frequent labs?


Absolutely. The goal is to get you euthyroid (normal feeling great etc.) and that is unconscionable to not see you for 6 months. I kid you not. Ask anybody here.

The normal protocul is patient is to lab every 8 weeks, get meds titrated. This usually takes a year or more. Then when at last the patient is stable and feeling well, quarterly visits are fine.

By the way, how low is that dose of levothyroxine?


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## Tiff (Jan 27, 2010)

I haven't picked up the prescription yet this morning, but I think he said 50 mcg?


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## Andros (Aug 26, 2009)

Tiff said:


> I haven't picked up the prescription yet this morning, but I think he said 50 mcg?


That is the prescribed starting dose which is good but you cannot be expected to sustain on that for very long. I can guarantee you that.

So, let me know how you fare w/ this doctor and 8 weeks labs. You "may" have to find a doctor who is amenable to the 8 week lab and titration process.


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## Nosbunny (Jan 21, 2010)

Hi and welcome,i'm new too and it seems like a very good place.I would also ask for a saliva test if they haven't done that yet as its alot more accurate.I too have hashi's and the irregular heart beating just happened to me when i was without my medication for 6 days due to the lack of my medication being avaiable.its very scary i hope you start to feel better


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