# Newbie Hashimotos Post



## karenhj (Oct 21, 2012)

Hi, I am new to the board. Long story short (I'll try). Have had elevated thyroglobulin for years. Endo has done two ultrasounds - nodules had not changed. I can't remember if the last ultrasound was 2010 or 2011. I'll have to check. Have had HR issues off and on for 3 years too. Went to ER last week feeling faint, dizzy, chest tightness. Echo/chest x-ray was fine. Rate issues, but that's it. Cardiologist wants me to wear a holter monitor just for my peace of mind I think. TSH in hospital was 6. I have been going to an integrative medicine doctor. Been tested (will list results) and now she wants me to build up adrenals before starting thyroid meds. I feel like crap - anxiety, depression, muscle aches, burning, jaw, teeth, neck pain, headache, feel like a cat on a hot tin roof.

Meds - metoprolol - 25 mg., xanax - .25-.5 mg. as needed
Labs - 7/31/12
Thyroglobulin - 2499 (down from 2916 3/12)
TPO - 693 (down from 1000 3/12)
FT3 - 2.9 (2.3-4.2)
FT4 - 1.03 (0.89-1.76)
TSI - 91 (<140)


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## Andros (Aug 26, 2009)

karenhj said:


> Hi, I am new to the board. Long story short (I'll try). Have had elevated thyroglobulin for years. Endo has done two ultrasounds - nodules had not changed. I can't remember if the last ultrasound was 2010 or 2011. I'll have to check. Have had HR issues off and on for 3 years too. Went to ER last week feeling faint, dizzy, chest tightness. Echo/chest x-ray was fine. Rate issues, but that's it. Cardiologist wants me to wear a holter monitor just for my peace of mind I think. TSH in hospital was 6. I have been going to an integrative medicine doctor. Been tested (will list results) and now she wants me to build up adrenals before starting thyroid meds. I feel like crap - anxiety, depression, muscle aches, burning, jaw, teeth, neck pain, headache, feel like a cat on a hot tin roof.
> 
> Meds - metoprolol - 25 mg., xanax - .25-.5 mg. as needed
> Labs - 7/31/12
> ...


Egads!!! Best get another ultra-sound no matter when the last one was!!!

Not to mention that you have TSI which means you are possibly hyperthyroid.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

I really think you might have Graves' Disease.

TPO
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

See if your doc will run this test. This is the antibody to TSI.

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583

If you are having palps/arrhythmia, perhaps you should be on a beta-blocker?

Sometimes the above antibodies mess around w/the numbers on TSH, FT3 and FT4 causing them to not reflect what is really going on inside your body.

I am truly worried about such high Thryoglobulin Ab and TPO.

cancer TPO and thyroglobulin
http://onlinelibrary.wiley.com/doi/10.1111/j.1699-0463.1994.tb04888.x/abstract
http://www.wikigenes.org/e/gene/e/7173.html

Understanding Thyroglobulin Ab.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html

Thyroglobulin Ab and cancer
http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf

The antibodies are what are doing a number on you; I know you feel really really ill. First hand experience!


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## karenhj (Oct 21, 2012)

Thanks for the tips. Yes, see my first post - med list. I am on a beta blocker. Regarding the TSI - per the lab I had it done at it said less than 140 was normal. Thyroglobulin has been high for 3 years. These recent additional tests I had done in July I requested because I had been reading some material. I added on the TPO, TSI, RT3 (forgot to mention that one - 269 -90-350 is the range). I also had B12 and serum ferritin and D levels checked. D was low, but the other two were low normal. I am in the process of making another appointment with yet another doctor. Spoke to them earlier today.


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## Andros (Aug 26, 2009)

karenhj said:


> Thanks for the tips. Yes, see my first post - med list. I am on a beta blocker. Regarding the TSI - per the lab I had it done at it said less than 140 was normal. Thyroglobulin has been high for 3 years. These recent additional tests I had done in July I requested because I had been reading some material. I added on the TPO, TSI, RT3 (forgot to mention that one - 269 -90-350 is the range). I also had B12 and serum ferritin and D levels checked. D was low, but the other two were low normal. I am in the process of making another appointment with yet another doctor. Spoke to them earlier today.


Not normal.....................sorry; you simply are not supposed to have TSI and TPO Ab. Hope you read the links I enclosed.

And you should get a Thyroglobulin only test. Not Ab. Something is afoot here.

Also, read this please!

Substances not found in normal serum
http://www.thyroidmanager.org/Chapter6/Ch-6-6.htm

D will be low....................you will find this interesting.

Vitamin D
http://www.eurekalert.org/pub_releases/2009-04/arf-vdm040809.php

In your case, I would press for RAIU (radioactive uptake scan.)


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## karenhj (Oct 21, 2012)

Yes, thanks. I am in the process of seeing yet another doctor. We'll see what bag of tricks this new one will have up their sleeve. I've had 2 internists and 1 endocrinologist so far, not to mention the cardiologist, and one endo consult last time when I was in the hospital. All they ran was the TSH then and it was 10. Of course, I see from other posts, people had numerous consults before they found the right one. All I know is that I am sick and tired of being sick and tired. I will definitely push for another ultrasound this time. Oh, I found out I had one last year, but nonetheless, it's time for another one. I don't have insurance, so I will have to plan ahead on paying.


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## surge (Aug 15, 2012)

Hi, Karen. Sorry you're having such a struggle. Your numbers aren't too different from mine and your heart issues are a lot like mine (I saw more detailed view in the your reply to Karin on anxiety). I did wear a holter for 24 hours and it was really useful for me to have the thing.

First, it was good for me to see that I'm not crazy. My heart rate really does go up oddly over night.

Second, I carry the printout from the holter with me. I showed my endo, who is a little skeptical about my issues. She thinks it's not thyroid related, but with this print out and print outs that show that really, everything else is my body is normal except these totally whacked out thyroid numbers, she was relieved and actually then immediately recommended surgery. Not exactly what I thought would happen.

So then I took all my printouts to a surgeon. and I am having my thyroid removed in November. The only other solution anyone can think of is to try to take more levoxyl to eventually tame the thyroid but I can barely handle the heart palps and diarrhea, nausea, as is and I'm on a tiny dose.

All of this is to say that the holter might be a good idea for you. It's a relatively inexpensive test, but it is mostly useful for confirmation, not for diagnosis (except negative diagnosis. This shows I don't have arrhythmia which was a concern for my endo).


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## Andros (Aug 26, 2009)

karenhj said:


> Yes, thanks. I am in the process of seeing yet another doctor. We'll see what bag of tricks this new one will have up their sleeve. I've had 2 internists and 1 endocrinologist so far, not to mention the cardiologist, and one endo consult last time when I was in the hospital. All they ran was the TSH then and it was 10. Of course, I see from other posts, people had numerous consults before they found the right one. All I know is that I am sick and tired of being sick and tired. I will definitely push for another ultrasound this time. Oh, I found out I had one last year, but nonetheless, it's time for another one. I don't have insurance, so I will have to plan ahead on paying.


Wow; so many of us are in the no insurance mode. People are in crisis regarding medical care.

One step at a time; do what you can, when you can.


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## karenhj (Oct 21, 2012)

Shelley,
What is the reason you are getting your thyroid out? Do you have nodules or are they just removing it for some other reason?


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## karenhj (Oct 21, 2012)

So the endo won't see me because they don't take "self-pay" patients. Go figure. It is probably best anyway. I got my internist to do a script for the ultrasound, so I don't really need to see the endo, which most of them I don't trust anyway. I think this journey will be a combination of eastern and western medicine most likely no matter what comes about. I don't totally trust some allopathic doctors. Big Pharma runs them anyway.
Will post again later when I have more to update.


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## karenhj (Oct 21, 2012)

Well, still feeling lousy. Finally got the prescription for the ultrasound and will schedule it for after Thanksgiving. I have the full aching feeling in my thyroid area, burning muscles, aching joints, anxiety, alternating diarrhea with normal BM, depression, weakness, stomach pain/burning, cramping, constant headache, etc. With all that I read, I don't know which way to go. I'm stuck. I'm scared to take meds, scared not to take meds, etc. Constantly worried and scared. I try to keep going, get out of the house, do interesting things, etc. to get my mind off things. Just don't know which way to turn. Sorry to vent. Just tired of this.


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## Andros (Aug 26, 2009)

karenhj said:


> Well, still feeling lousy. Finally got the prescription for the ultrasound and will schedule it for after Thanksgiving. I have the full aching feeling in my thyroid area, burning muscles, aching joints, anxiety, alternating diarrhea with normal BM, depression, weakness, stomach pain/burning, cramping, constant headache, etc. With all that I read, I don't know which way to go. I'm stuck. I'm scared to take meds, scared not to take meds, etc. Constantly worried and scared. I try to keep going, get out of the house, do interesting things, etc. to get my mind off things. Just don't know which way to turn. Sorry to vent. Just tired of this.


It would be good to get the ultra-sound first and foremost before taking any meds. I am glad you are able to do this.

One day at a time, one step at a time.

Keeping you in my thoughts and prayers.


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## surge (Aug 15, 2012)

Hi, Karen. I empathize. I'm so sorry you're having such a hard time. I do think your body is at war with its self. You're probably going hypo-- that's what the headaches can indicate and fatigue, but it's complicated by the TSI which also brings in some hyper symptoms.

You mentioned in the past that you're low normal on iron and B, as well as low on D. It helped me, to a limited degree, to work on my D. I started taking Floradix (thanks to Andros' suggestion) and it's expensive but liquid, so it doesn't constipate and is easily absorbed. It also supplements B-vitamins (perk!). Maybe get the smaller bottle and try it for a month to see if you feel some improvements as far as aches and the heart...

I had my thyroid out a week ago. I could not get to a balanced place and couldn't tolerate higher levo doses. My bp was up and my heart rate was up. Immediately after surgery, my bp was going back down to normal. I've had a week of crazy heart rate and palps, but it's tapering back down to normal for longer stretches of time now. Ahh. I'm not sure surgery fixed anything, but my thyroid was a mess and had my lymph nodes were swollen as well.


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## piggley (Sep 15, 2012)

karenhj said:


> So the endo won't see me because they don't take "self-pay" patients. Go figure. It is probably best anyway. I got my internist to do a script for the ultrasound, so I don't really need to see the endo, which most of them I don't trust anyway. I think this journey will be a combination of eastern and western medicine most likely no matter what comes about. I don't totally trust some allopathic doctors. Big Pharma runs them anyway.
> Will post again later when I have more to update.


Karen, agree with you 100%.--
I wish i felt safe and in good hands, but long and bitter experience has removed that illusion,
I wish conventional and alternative medicine would come together - we need both, but Big Pharma stands in that doorway.
Good luck, hope all goes well and you feel better very soon.


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## karenhj (Oct 21, 2012)

Thanks Andros, Piggley and Surge for the advice/comments. I appreciate your concern. Hopefully there will be light at the end of the tunnel sooner rather than later. Just have to keep plugging along and be persistent. I'll let you know what the ultrasound shows and if I can determine anything from there to move forward with.


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## greatdanes (Sep 25, 2010)

karenhj said:


> Thanks Andros, Piggley and Surge for the advice/comments. I appreciate your concern. Hopefully there will be light at the end of the tunnel sooner rather than later. Just have to keep plugging along and be persistent. I'll let you know what the ultrasound shows and if I can determine anything from there to move forward with.


My labs were VERY similar to yours except my TSI was 99, and b/c like you, the reference range made it look like that was normal when in fact it wasn't. I actually felt fine during that time, I was only tested b/c my gyno noticed that my neck looked 'puffy'.. The only odd thing I recall is being more paranoid than usual. I went 2 yrs then I went hyper and my pulse was dangerously high. I dx myself as having both graves and hashi's. You will feel fine again eventually. Your b12 should be at least 500. Ignore their levels of 'normal'. If you do the research, you'll find that their ranges are off, just like with thyroid ranges.


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## Andros (Aug 26, 2009)

karenhj said:


> Thanks Andros, Piggley and Surge for the advice/comments. I appreciate your concern. Hopefully there will be light at the end of the tunnel sooner rather than later. Just have to keep plugging along and be persistent. I'll let you know what the ultrasound shows and if I can determine anything from there to move forward with.


Glad to hear that things are still in motion. Yes; we must hear from you about the ultra-sound.


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