# Graves + thyroiditis? Never Graves at all?



## Steal_My_Skin (Mar 18, 2011)

Was diagnosed with Graves at the beginning of this year, and have been on methimazole ever since. I still have all of my thyroid (and then some, apparently).

I went back to doc earlier than scheduled because my neck has recently been swelling and it has become physically uncomfortable. I'm also noticing I have less energy than I used to, I now have muscle fatigue that's quite literally cramping my workouts, my headaches are coming back, and my voice is getting hoarse. Doc palpated my neck and said I now have a large, firm thyroid gland that is indicative of acute thyroiditis. He ran some blood tests and I'll have the results of those at the end of this week.

I did some reading and thyroiditis is some scary sh!t, but it sounds like (and doc says) it will run its course and go away without treatment. What's interesting is that the course of thyroiditis (depends what type, and I don't know the answer to that yet) is, you go hyPER, then hyPO, and then most people return to normal... all over the course of several weeks or months.

Here I am, 4 months into treatment for Graves, and doc says it looks like I've gone hyPO (and not because I'm being overmedicated, but because of the thyroiditis. Though the anti-thyroid meds aren't helping.) Has anyone here dealt with thyroiditis? Can it be co-morbid with Graves? Or did I never even have Graves at all?!


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## Andros (Aug 26, 2009)

Steal_My_Skin said:


> Was diagnosed with Graves at the beginning of this year, and have been on methimazole ever since. I still have all of my thyroid (and then some, apparently).
> 
> I went back to doc earlier than scheduled because my neck has recently been swelling and it has become physically uncomfortable. I'm also noticing I have less energy than I used to, I now have muscle fatigue that's quite literally cramping my workouts, my headaches are coming back, and my voice is getting hoarse. Doc palpated my neck and said I now have a large, firm thyroid gland that is indicative of acute thyroiditis. He ran some blood tests and I'll have the results of those at the end of this week.
> 
> ...


Thyroiditis and Hashimoto's are used interchangeably. The best terminology would be Hashimoto's Thyroiditis.

Here is info on that.
http://www.thyroidmanager.org/Chapter8/8-frame.htm

And I don't know if I explained the criteria for Graves' or not but here is info on that.
http://www.thyroidmanager.org/Chapter11/11-frame.htm

As per Dr. Robert Graves', the clinical (observation) criteria would be exophthalmos, goiter, pretibial myxedema and thyrotoxicosis.

Let us know what you think after having read all this information. Listen to your "inner doctor."


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## kdsjen (Apr 25, 2011)

I also was originally diagnosed with Graves (without meeting those criteria, just based on some symptoms and labs) but switched from my PCP to an endocrinologist before treatment. Based on my antibodies, my endo thinks it's early Hashimotos instead and I'm just riding out the slightly hyper stage (on nothing but beta blockers) and waiting to see what happens. 
Were you ever tested for antibodies or have an u/s? 
You story sounds kind of similar so I'm interested to see what the "experts" have to say! I do have to say that I was a little relieved (if I can even say that) to be looking at a hypo rather than hyper future. I just hope it all ends up straightforward.. for both of us!


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## Andros (Aug 26, 2009)

kdsjen said:


> I also was originally diagnosed with Graves (without meeting those criteria, just based on some symptoms and labs) but switched from my PCP to an endocrinologist before treatment. Based on my antibodies, my endo thinks it's early Hashimotos instead and I'm just riding out the slightly hyper stage (on nothing but beta blockers) and waiting to see what happens.
> Were you ever tested for antibodies or have an u/s?
> You story sounds kind of similar so I'm interested to see what the "experts" have to say! I do have to say that I was a little relieved (if I can even say that) to be looking at a hypo rather than hyper future. I just hope it all ends up straightforward.. for both of us!


I was in very advanced stages and was only diagnosed after having almost died from a thyroid storm.

In my case, at that point in time, I presented w/the clinical criteria I mentioned.

Many say that Hashi's and Graves' really are sisters in the hood and that Hashimoto's patients can present with the 4 clinical criteria at which point it is dubbed Graves'.

After all this happend, I finally got medical intervention and was tested for some antibodies. That was back in the day and now they have identified many more antibodies and autoantibodies (binding, blocking and stimulating) indigenous to the thyroid.

Here is just a sampling.

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

TSI (thyroid stimulating immunoglobulin),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/

Never had a sonogram. Eventually had RAIU (radioactive uptake.) Now, Hashimoto's "typically" presents with high titers of TPO (antimicrosomal) and a grape-like cluster of nodules but do bear in mind that this too is only suggestive and the true test for Hashimoto's would be FNA where the pathologist would look for and identify Hurthle Cells indigenous to Hashimoto's.


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## Steal_My_Skin (Mar 18, 2011)

In this case, my doctor is not using Hashimoto's and thyroiditis interchangeably. He says I have ACUTE Thyroiditis. It is ridiculously rare, and I'm struggling to find good info to show you. But it differs from Hashimoto's in that Hashi's is chronic.

My TSH hit 100. I've been taken off my methimazole, and I'm waiting to hopefully get back to normal... I just don't know if normal means NORMAL, of if normal means Graves.

Some idea of what I'm facing:
http://en.wikipedia.org/wiki/Acute_thyroiditis

Page 2 of this PDF describes forms of thyroiditis that are not Hashimoto's:
http://www.thyroid.org/patients/brochures/Thyroiditis.pdf


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## Andros (Aug 26, 2009)

Steal_My_Skin said:


> In this case, my doctor is not using Hashimoto's and thyroiditis interchangeably. He says I have ACUTE Thyroiditis. It is ridiculously rare, and I'm struggling to find good info to show you. But it differs from Hashimoto's in that Hashi's is chronic.
> 
> My TSH hit 100. I've been taken off my methimazole, and I'm waiting to hopefully get back to normal... I just don't know if normal means NORMAL, of if normal means Graves.
> 
> ...


Now I got it. This is called Riedel's, I believe. I hope you will be interested in reading the entire pathology page. I have had this link bookmarked for quite a few years.
http://www.histopathology-india.net/riedel's_thyroiditis.htm

Acute (suppurative) thyroiditis is a rare, infectious thyroid disorder caused by bacteria and other microbes. The rare, invasive fibrous thyroiditis (Riedel's thyroiditis) presents with a slowly enlarging anterior neck mass that is sometimes confused with a malignancy. (Am Fam Physician 2000;61:1047-52,
http://www.aafp.org/afp/20000215/1047.html

Please let me know if we are now on the same page and also are you going to have biopsy to confirm?

I am going to your links now.

Hugs,


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## Steal_My_Skin (Mar 18, 2011)

Doc repeatedly said "acute thyroiditis." I'm still waiting to see my labs and I have follow up labs in a couple weeks. He didn't refer to any of the other types of thyroiditis during our appointment.

I think acute or subacute sound the most plausible based on the labs I've seen and the course of this (and I'm hoping it's just one of those). Before I got diagnosed with Graves', I had spent three months vomiting and weak. Why this was happening has never been fully explained, but I saw a GP in that state, before the endocrinologist, and she suspected acute thyroiditis because I seemed to be following the course of "crazy sick --> hyperthyroid," and now "hyper --> hypo." I just want resolution. Without weight gain. This roller coaster ride sucks.


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## Steal_My_Skin (Mar 18, 2011)

Follow up for anyone who may be interested (not because I expect any help at this point, but in hopes of helping someone else... because I know how awful it feels when you can't find anyone else experiencing what you are going through).

Got my labs. TSH was over 100 (ref range 0.34-5.6). FT4 was 0.11 (ref range 0.58-1.64). Just as doc figured, I have gone hypo, apparently due to acute thyroiditis. He believes the thyroiditis was caused by a virus. He hasn't done any further testing, and I don't know that further tests could even reveal at this point. Doc will check my levels again in a few weeks. For now, doc has me off methimazole in hopes that I level out. First few days off methimazole were bad, but I'm now having more energy, less neck swelling, and less neck pain.

Labs also revealed high Alk. phosphatase (169, ref range: 42-98), and high creatine kinase (229, ref range: 26-140). The creatine kinase is basically evidence of my FT4 getting so low that my muscles were suffering. This explains why walking became excruciating.

Doc still thinks I have Graves' underlying this whole thing. However, my labs show that I have never been tested for antibodies... is TSH and FT4 enough to diagnose Graves'? We'll see what happens in the coming weeks.


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## Steal_My_Skin (Mar 18, 2011)

It's been a while, and I've been away because I have been doing great!!

Doc diagnosed me with Graves in January and put on methimazole. Then in April I went hypo from acute thyroiditis. Stopped taking the methimazole in April, and I've had two or three follow-ups since then. Got my latest follow-up labs earlier this month, and my TSH is roughly 1.30, with a reference range of about 0.5 - 4.5 (I don't have the docs in front of me). I've been off methimazole since April, and I still have my entire thyroid.

I am still not holding my breath on this, but it looks great! I'm still lingering in the shadows. PM me if you want to talk about ACUTE thyroiditis or Graves.


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