Graves - Racing heart, but normal labs...

[skimordiegirl]

Hello,



Long story short I woke up with racing heart and immediately thought graves flare. My endo ordered the testing and confirmed it and so we increased my methimazole to 2.5 mgs every day instead of the 2.5 every other day that I had been on.



I continued feeling awful so I increased it to 2.5 mgs twice a day and let her know. She did another test and it showed I was in range, but said to stay on the methimazole twice a day 2.5. I still kept feeling awful... waking up in the middle of the night every hour with my heart racing, sweating and sometimes diarrhea. She eventually told me it wasn't my thyroid, but would do a neuro endocrine test and if it comes back negative to see a cardiologist because it isn't my thyroid. She still never called me a week later, so she is brushing me off and thinks I am crazy...



Here is a link to my most recent labs, I hope you can read them okay. The one that doesn't have a date on it is one of the ones I had done right before this flare (which by the way started after a sinus infection) and is from 06/30/14.



I started feeling better a few days ago however yesterday I woke up with a sore throat and now it's on fire this morning and I am having the racing heart and diarrhea again. I remember my endo mentioning on one of the appointments that she can't rule out thyroiditis, but she has never heard of it running along side graves. I am ALWAYS stable for months and months at a time, but it always seems when I check my posts or records my flares happen when I either get a sinus infection or a cold/flu. Can anyone confirm that?



I recently ordered thyrosoothe.... hoping it can help with the racing heart. I don't want to take the recommended dose, but a smaller amount if possible because I don't like taking much of anything unless I have to... I am just desperate for sleep as I take care of my 4 year old during the day.



One person on another board mentioned I was Hypo... but I don't understand that.. I feel lost and helpless... my Dr. is avoiding me and I have no other doctors in this area. I keep hearing things from other members about raising the T3Free, but I don't know how to do that and my current doctor will not do block and replace. I literally feel like this is going to lead to my demise or something.... it's an awful feeling.....



Thank you!

[Barb135]

There isn't anything you can do with Hashimoto's.  Your endo is right - with Hashimoto's, the body sees the thyroid as foreign and the antibodies attack it until it can no longer produce thyroid hormones, which does cause you to be hypo.

First line of treatment is a T4 thyroid replacement hormone, such as Synthroid, Levoxyl, generic Levothyroxine and if needed an added T3 med, such as cytomel.  Some doctors are willing to prescribe desiccated hormones that come from pigs, such as Armour or NatureThroid or the Canadian version called ERFA.  There's also Acella and Westhroid.  Many people consider desiccated hormones to be more "natural"; however, I don't because they come from pigs who produce much more T3 and less T4 than humans do...so that's not natural for us.

Since you have Graves, also and it appears that the Graves has been dominant, you may have to do a block and replace, which is where you block the thyroid from producing hormones, then replace them with the correct amount you need.

Do you know if you have thyroid nodules?  

So let's back up a little bit... You said you were taking 2.5 mg methimazole twice/day; are you still taking that?  Have you had a chance to talk to your doctor?  Is anyone explaining why your doctor isn't calling your back and why she hasn't order the neuro endrocrine testing?  

If she's going to ignore you, then, by all means, you really need to find a doctor who will do proper testing on you and will treat your condition the way it needs to be treated.

[skimordiegirl]

Also, here is the link to my actual lab work...... somehow I missed attaching the link. http://s1295.photobucket.com/user/Candi_Dandy/library/


I am wondering... if my TSH just keeps rising and I am feeling tired, and racing heart when I sleep and wake up.... could I be on too much ATD? Would dropping it a little possibly help with those symptoms?

[skimordiegirl]

Hi, Barb -

What does one do with Hashimotos? I asked my past two endos about that because of the high hashi antibodies and all they said was it just indicates that you will one day be hypo.

[skimordiegirl]

Thank you so much!

Okay it looks like the nurse said she only did the tsh which was 1.54 and then a T4Free which was 1.0.


Thank you for the selenium suggestion :)

[Barb135]

Yes, I've read those studies.  My own experience was that antibody levels did not begin to lower until my thyroid burned out, in spite of taking a daily 200 mcg dose of selenium, for the past several years.  I do find, however, that selenium appears to help with the conversion of FT4 to FT3.

[898_1]

Some controversial studies suggesting that adding selenium to daily diet can lower TPO antibodies.

[Barb135]

Your positive TSI does confirm Graves Disease; however, the elevated TPOab of 452 would be the basis for a diagnosis of Hashimoto's.  You don't have to have both TPOab and TgAb to have Hashimoto's; some of us have one or the other, some have both.

Can you find out if they did a Free T3 and Free T4, last week along with the TSH of 1.54?  If so, please post the results and reference ranges.  If they didn't do Free T3 and Free T4, you might want to think about finding a different doctor.  Any doctor who will neglect testing actual thyroid hormones in a Graves patient is not a good thyroid doctor.

There's nothing you can do to lower antibody counts, but getting and keeping your FT3 and FT4 under control, which will alleviate your symptoms will allow you to sleep at night.  I'm not familiar with thyrosoothe; there are some herbs that might help you sleep.

[skimordiegirl]

Hi! Thanks for writing back so quickly!

I was diagnosed with graves in 2000. They did an iodine thyroid scan and blood work. I was only 19 so I am not sure what all was tested. It took them a long time to figure it out though. I had graves eye disease by that time too.

My most recent (6/30/2014) TSI test was 332 (140% baseline)

Thyroid Peroxidase Antibodies 452 (1,000

Thyroglobulin Antibodies <1 (< or =1)

Thyrotropin Binding inhibit Immunoglobulin 23.6 (<=16.0 %)

Also I had another set of labs done last week and was only told my TSH, which was 1.54 (0.40 - 4.50)

Is there anything that can help lower the antibodies naturally. I was hoping something like the herbs in thyrosoothe would, but I don't know much about that. I just want to get a good nights sleep.

Thank you! :)

[Barb135]

Since you don't have a link to blood test results, I've copied in the results from another thread you posted with the same information, that did include these results.  It's best when you keep all your information in one thread.

"TSH 1.01 and t4, free 1.54. T3Free 3.3"  

What are the reference ranges for the Free T4 and Free T3?  Ranges vary from lab to lab and have to come from your own report.  

Again, since there's no link to the labs, can you please post whatever other labs you wanted us to see.  The best way to post labs is like this:
TSH   x.xx   (x.xx - x.xx )
FT 3    x.x   (x.xx - x.xx)
FT4     x.x   (x.xx - x.xx)
This way we have the parameter, result and ranges (in parenthesis) all together.  

On what basis were you diagnosed with Graves Disease?  Thyroid Stimulating Immunoglobulin (TSI) is the definitive test to diagnose Graves.

Have you been tested for Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb).   TPOab and TgAb are the antibody tests used to diagnose Hashimoto's Thyroiditis.  While Hashimoto's is most often associated with hypothyroidism, it often begins with hyperthyroidism in the early stages and can swing from hyper to hypo or simply alternat with periods of normal.

There are 2 possibilities... one is that you never had Graves Disease at all, but have had Hashimoto's all along, with the periods of hyper and the months of being stable between flares.  The other, while somewhat rare is that you have both, Graves and Hashimoto's, which is entirely possible - your endo should know that.

It's possible that you could be hypo as was suggested on the other board, because we've seen the rapid heart rate and other symptoms with hypo, but with your FT4 at 1.54 and FT3 at 3.3, I'd doubt it.  When you can post the other labs you have, along with whatever antibody tests you've had done, that will tell us a lot more and we can go from there.