# Hashi's, or wild guess?



## ScaredAJ (Jun 3, 2011)

So after 6 years of hypothyroidism, a cancer scare, and countless tubes of blood, they finally tell me I have Hashimoto's.

I'm unsure how to take this news. I know the blood tests were never ran testing me for the antibodies. This diagnosis comes from the pathologist who did my FNA. Is that right?

Either way it's an educated guess or the FNA did more than just check for cancer cells.

I seen my PCP last evening and I informed her that I want my thyroid removed, that it causes pain in the nodes under my collarbone and she referred me to a General Surgeon. She also said that I should have a soft tissue scan of my thyroid. I think this is to check for other causes of the pain in my lymph nodes.

I have searched, and researched and can't find anything that makes sense. I don't understand what could be wrong with me, and Hashi just doesn't seem like the full picture. I guess only time will tell. I feel so helpless in my own skin.


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## lavender (Jul 13, 2010)

I know how scary and confusing this all is. I think that if your gut is telling you to have it out, then you should go with your gut. From my understanding, the only way to definitively diagnose Hashi's is by actually finding the cells suggestive of Hashi's, which may be what they found in the FNA. But even a FNA is not definitive. Having a pathologist look at your gland after surgery is the best way to know for sure if there has been cancer or nor. Antibody tests can tell us that something is wrong, but are not necessarily definitive either. Even after my surgery, my docs told me definitively Graves, possibly Hashi's.

Before you have someone take out your thyroid, make sure they are VERY experienced with thyroidectomy, as in they have done at least 500, and do at least 100 a year. Thyroid removal is very fine surgery and you want a skilled experienced hand in there near your vocal chords and parathyroids. If the general surgeon is not experienced with thyroid removal, I would ask him for a referral to someone who is.

Have you seen an endocrinologist? I think maybe a consult with one who specializes in thyroid cancer would be reasonable if you think it might help calm your fears. At the very least, I would want to see a surgeon who knows something about thyroid and lymph cancer.


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## Breeze123 (Jun 1, 2011)

I echo lavender's sentiments. Thyroid removal is very tricky. Perhaps you can find a good endo who can establish a plan of attack. I've had Hashi's for about 4 years. I was originally diagnosed as having Grave's, but my docs said that my Graves caused my thyroid to burn out, and I know have Hashi's. I had an ultrasound to confirm. Perhaps you can have an ultrasound to confirm instead of having them examine your thyroid after it is removed to determine whether you have Hashi's. Establishing a plan of attack is key.


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## lavender (Jul 13, 2010)

Actually, an ultrasound isn't going to give you any more info. Radioactive iodine uptake and scan is more accurate for diagnosing thyroid nodules, and FNA is usually used as follow up.

The reason I suggested a endo who specializes in thyroid cancer is to work with someone who can help come up with the best plan for removing the thyroid and dealing with any cancer, if it is found. I suspect that the lymph node pain is due to whatever is going on in the thyroid, but wouldn't want to bypass diagnosing an issue in the lymph nodes.

I think if someone's gut is telling them to have their thyroid out, going with that gut reaction is ALWAYS the best choice. If there's doubt, further testing makes sense.


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## Andros (Aug 26, 2009)

ScaredAJ said:


> So after 6 years of hypothyroidism, a cancer scare, and countless tubes of blood, they finally tell me I have Hashimoto's.
> 
> I'm unsure how to take this news. I know the blood tests were never ran testing me for the antibodies. This diagnosis comes from the pathologist who did my FNA. Is that right?
> 
> ...


FNA is the only affimative diagnosis of Hashimoto's. The pathologist identified Hurthle Cells specific to Hashimoto's.

However, that does not mean that they won't find cancer cells when they send your thyroid out to pathology. There are Hurthle Cells indigenous to cancer as well so I hope the pathologist knows his/her stuff.

Histologic diagnosis of Hashimoto's
http://emedicine.medscape.com/article/120937-diagnosis

Hashimoto's Hurthle cells
http://www.pathconsultddx.com/pathCon/diagnosis?pii=S1559-8675(06)71549-2

And those with Hashi's have a propensity towards cancer.
Graves' and Hashi's cancer
http://www.thyroidmanager.org/Chapter18/18-cancothr.htm

If I were in your shoes, I would have it out also. Tell me, why have they not done an FNA of one of your swollen Lymph nodes?

And I am going to comment, "If you feel there is something else, you are probably right!" It's your body and you have been wearing it for a long time. Listen to your instincts.


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## ScaredAJ (Jun 3, 2011)

Ah I see, that explains why the pathologist was the one that finally said Hashi's.

I tried to get an appt for the one endo we have in the area, and she can't see me for a consult until late September.

I know my body is telling me something, what I have no idea. My PCP was very understanding and said the treatment for Hashi's is thyroid medications and we are already doing that. She seems to think that if I want it out, it should come out. I think that if its going to cause me pain, it should go too.

My symptoms have all been very clear, and some quite scary, but I can't see Hashi being the full answer.

The room spun on me, my face went numb, as well as my tongue. Er said every CT scan was normal, go get checked for Bells Palsy. A few months later I got my DVT, and that all made sense at the time. They said Lupus Anti coagulant, I stayed on blood thinners for 2 years. After my son was born the Lupus anti coagulant was gone? Fine. Shortly after the fatigue hit and they found the goiter. I've been on levo since. I'm being treated for anxiety, major depressive disorder. They've done EKG's for my racing heart and pain that was in my chest under my left collar bone. I've pointed out swelling in my legs, unbearable pain in the winter and cold sets into my bones. When I get upset the pain under my collar bone gets worse, and you can see the swelling. my veins hurt sometimes too. My arm went numb for days and the neurologist tested me for carpel tunnel, nothing, numbness went away.

All of this happening periodically over 6 years Each symptom was treated like its own new issue. Never were any of them connected to the other. My doctors never put any lines together, and just treated what they could. I just want to know why this is happening to me, and if we can stop new things from happening.

I guess the next step to take is the CT which is next week. Soft tissue scan of the neck area. hopefully will catch anything they may have missed with the FNA, and ultrasosund.


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## Andros (Aug 26, 2009)

ScaredAJ said:


> Ah I see, that explains why the pathologist was the one that finally said Hashi's.
> 
> I tried to get an appt for the one endo we have in the area, and she can't see me for a consult until late September.
> 
> ...


Have you posted your labs results and ranges? Your most recent ones? I would like to see TSH, FREE T3 and FREE T4 if you have them and have you had TSI lab test?

I am not sure you are hypo.

Humor me, if you will.

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

Lupus anticoagulant...................hmmm; can't see that disappearing.

When was the last time they did Cardiolipin Ab?

Have you been tested for Lupus? Anti-DNA, C3, C4??

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

It is possible to have Hurthle Cells for Hashi's and be hyper at the same time.

I am so sorry; I truly am concerned and care a great deal about what is going on with you.


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## lavender (Jul 13, 2010)

It does sound like you have some hyperthyroid symptoms when you mention anxiety and heart palpitations, which makes me think of hashitoxocosis that others have referred to with high and low swings. I had antibodies for both Hashi's and Graves. I had symptoms for years before I got diagnosed because my thyroid tests generally looked normal, or sub-clinical.

But when you mention Lupus and other symptoms like the numb face and tongue, I wonder if you might have something going on besides just thyroid. Treating the thyroid may go a long way toward your overall health, but if something else is going on, it won't solve everything.

veins hurt.....could that be similar to what I felt in thyroid storm when it was like every cell in my body was on fire and I was screaming in pain when thy were trying to get an IV? Not sure, it could be something else entirely, but it sounds hauntingly familiar.


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## Andros (Aug 26, 2009)

lavender said:


> It does sound like you have some hyperthyroid symptoms when you mention anxiety and heart palpitations, which makes me think of hashitoxocosis that others have referred to with high and low swings. I had antibodies for both Hashi's and Graves. I had symptoms for years before I got diagnosed because my thyroid tests generally looked normal, or sub-clinical.
> 
> But when you mention Lupus and other symptoms like the numb face and tongue, I wonder if you might have something going on besides just thyroid. Treating the thyroid may go a long way toward your overall health, but if something else is going on, it won't solve everything.
> 
> veins hurt.....could that be similar to what I felt in thyroid storm when it was like every cell in my body was on fire and I was screaming in pain when thy were trying to get an IV? Not sure, it could be something else entirely, but it sounds hauntingly familiar.


Yep; I also had engorged painful veins w/advanced hyperthyroid. Ditto that.


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## ScaredAJ (Jun 3, 2011)

You ladies are great! I'll be back shortly with answers I have to see about getting some lab reports


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## lavender (Jul 13, 2010)

Andros said:


> Yep; I also had engorged painful veins w/advanced hyperthyroid. Ditto that.


Funny that sometimes we have the same symptoms and just describe it differently! I have to remember how bad that was to see that I am making progress, however slowly.

AJ, I would definitely want to check into hyperthyroid with those symptoms! Can't wait to see your labs. In case you haven't already started, I make sure to get every lab result from the doctor, and I put it in a folder. That way, I can keep it all together and have my own records.


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## ScaredAJ (Jun 3, 2011)

I called my Doctor and requested reports on all the testing I've had done since the start of last month. I will compile the list and post it for you. Maybe someone will have an idea of where I should turn my attention to. Oddly enough I have gotten more useful information from this board and support than I have from the medical community for 6 years!.

Sometimes I do wonder if I don't have hyper and hypo, but the blood tests always end in an increase of the levo. I also never asked questions and put a lot of blind faith in my health care team. I see now that was a mistake. Each Doctor treated their portion of my problems and never put their pieces of the puzzle on the table.

I have never been tested for Lupus or other auto immune disorders. I never asked. It wasn't until this last round of pain/symptoms that I insisted that something other than the glaring obvious was happening to me. I wanted to thank each of you for your replies and support. You have put hope into a situation I thought was hopeless.

I am tired of being tired and sleeping 18 hours straight is never good, and I can't let it keep happening. I seem to be slipping back into normal again, but its only a matter of time before I need 18 hours of sleep again, and every part of my body feels like I spent the week kick boxing bricks.


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## lavender (Jul 13, 2010)

Oh, I can so relate! Docs need to get better at working together and seeing the whole picture!

One positive thing about being a medical mystery is that I have learned a heck of a lot doing my own research. I keep wondering if I should take all this new knowledge and go become a patient advocate when I am finally feeling better!

I think it can be hard to get to the point where a doc is willing to test for Lupus and the like because they don't put the pieces together. My doc seldom asks for all my symptoms, she just wants to know the worst ones. Which is so ridiculous. She works at a university, and I love seeing interns because I tell them everything and make sure it at least gets in my chart! Even if she doesn't read it all, it's in there.

I have been wondering about possibly having Lupus myself, and it feels really difficult to go and ask a doc to do a bunch of tests. I'm scared of coming off as a hypochondriac, but at the same time I want to know if all these random bizarre reactions I have been having for years are related.

I can relate on the fatigue part. Yesterday, I had one appointment, then some friends came over. We made dinner. Thankfully they stayed to help me clean, and then I was ready to pass out. I could never imagine this would be my life before it happened.


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## ScaredAJ (Jun 3, 2011)

I know! I am afraid of sounding like a hypochondriac too. That's why I never questioned the doctors.

I don't think Lupus is what I have. I'm not sure what it is, but I've had enough. 
Time for some answers! I will be getting the labs today after I leave work. I'm actually thinking about getting the results for the sonogram and bio as well.


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## Andros (Aug 26, 2009)

ScaredAJ said:


> I called my Doctor and requested reports on all the testing I've had done since the start of last month. I will compile the list and post it for you. Maybe someone will have an idea of where I should turn my attention to. Oddly enough I have gotten more useful information from this board and support than I have from the medical community for 6 years!.
> 
> Sometimes I do wonder if I don't have hyper and hypo, but the blood tests always end in an increase of the levo. I also never asked questions and put a lot of blind faith in my health care team. I see now that was a mistake. Each Doctor treated their portion of my problems and never put their pieces of the puzzle on the table.
> 
> ...


Many of us have flipped between hypo and hyper for years. The end result is "usually" full-blown hyper though.

We will be glad to look at your "package"; bring it on. I love puzzles. LOL!!


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