# Hashimoto's sufferer, need help



## ELPsteel (Jul 10, 2011)

Hi all - my story is kinda complex but I'll try to make it as concise as possible. I'm 25 years old, and male.

One week in January I started to feel...uneasy. I didn't know what was going on, but something felt kind of off. That weekend I had a panic attack, and the night after that I was unable to sleep at my house. Things started to get really bad, I actually had to stay at my parents' house. I was feeling terrible chest symptoms: tightness, unable to breathe normally, and a general feeling of dread. My weight dropped from an already skinny 125 to 115 pounds in less than 2 weeks. Worse still, my thoughts were uncontrollable, all I could think of were my loved ones leaving me or dying in an accident. I was completely debilitated in bed crying for days. The doc put me on a sleeping pill and scheduled me for an endo appointment.

My tests revealed low TSH and high T3/T4. I didn't know Graves/Hashi's tests were done at the time so I didn't ask about them. The endo thought it was thyroiditis that would resolve itself, put me on beta blockers, and told me to come back in a few weeks. When I came back, it had only gotten worse. He changed his opinion, he thought I had Graves. He put me on Methimazole to suppress my thyroid function.

Things calmed down SLIGHTLY after starting Methimazole, but not enough. I was still having rather severe emotional problems. A small incident happened with my girlfriend, and after that I couldn't stop obsessive thoughts that I had to break up with her (I still have them but haven't done it). When I came back to the endo the numbers had improved but I was still not euthyroid. He doubled my Methimazole dosage and told me to come back in a month.

I started to feel a little better, I successfully weaned off beta blockers and decided to come off my sleeping pill. The week I did that, I experienced a nightmare hell situation. A few days into being zolpidem-free I experienced incredibly strong depression and anxiety, like 15 out of ten scale. It was so nightmarish I was sure that I would end up committing suicide. I saw the endo for an emergency appointment and my TSH had skyrocketed to 82! Turns out I actually have Hashimoto's, not Graves. I test positive for Hashi's antibodies. The endo tells me he thinks it was temporary thyroiditis after all, and that the medicine was making me extremely hypo. He took me off the medicine. That was close to a month ago.

I started to feel better after getting off the Methimazole (unfortunately I had to reinstate the sleeping pill due to the nightmare anxiety). I had another endo appointment a couple of weeks ago and I tested euthyroid. Still, things didn't feel back to normal but I figured it would take some time.

2 weeks ago, my family was getting ready for a cruise vacation. You'd think I'd be excited, right? Wrong. For some reason, I started experiencing a pounding heart, and having absolutely uncontrollable, racing, repulsive obsessive thoughts that I don't even want to discuss here. I felt like I was in someone else's body, living in some kind of weird dream world. I called my endo the day before we left but of course that's too late, I couldn't even talk to him. I left a message with his secretary. When I got on the ship, things just got worse. I actually spent a significant amount of time in the cabin crying, feeling out of control. My weight plummeted to a measly 111 pounds - keep in mind I'm 5'9" tall! And I was eating meat every night and lifting every day.

I just got back home today, and found a message from my endo on my phone. He basically said that given my last panel, he doesn't think it's my thyroid but he said if I have continued symptoms I can get more bloodwork done, which I'm going to do monday. But if the numbers come back normal, I'm basically going to have to go on psychiatric drugs because the endo won't do anything else.

I've been seeing a therapist to help me deal with the anxiety/depression during the past 6 months, but I really don't want to take drugs. I had NO problems in my life before this condition hit me. I feel like I can't have an anxiety disorder for that reason, and even if I did you'd think that 6 months of psychotherapy would help with that!

Is there any explanation for how I feel, if my TSH/frees are normal? I can't stop the obsessive thoughts, they are just crushing me. They make me feel like I can never be the same again, that something in my mind is fundamentally changed, broken. Even when I'm feeling ok, I'm still anxious because I know it's just a momentary eye of the hurricane, and that in an hour or so I will be feeling crazy again. I'm a pianist who performs and gives private lessons, and this is really starting to interfere with my ability to do what I love. In fact, I don't even really feel love anymore, I'm emotionally flatlined and in a mental fog. My relationship seems doomed - I have a beautiful amazing girlfriend who loves me - we've been together for 3 years! - and I can't seem to be attracted to her anymore because of how I feel emotionally. Everything in my life is absolutely going down the tubes. I'm sorry if that sounds melodramatic, but that's how I feel.

If my labs are normal, what can be done to help combat this darkness? Thanks all


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## McKenna (Jun 23, 2010)

Welcome and sorry to hear of your troubles.

Do you have all your labs and ranges that you can post? It would be helpful to see them, especially the most recent one. Did you have a TSI level? Your TSH was up to 82?! Wow! Movement of thyroid numbers can cause a lot of symptoms too, and it seems like you were swinging hyper to hypo pretty fast.

Thyroid issues can cause a lot of mental and emotional problems that can take a while to sort out. But, you mention prescription sleep aids, which do cause dependency and can be a nightmare to come off of if you go too fast.

Here is a thread where there was a recent discussion on mental issues from thyroid:
http://www.thyroidboards.com/showthread.php?t=3448
HTH!


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## Andros (Aug 26, 2009)

ELPsteel said:


> Hi all - my story is kinda complex but I'll try to make it as concise as possible. I'm 25 years old, and male.
> 
> One week in January I started to feel...uneasy. I didn't know what was going on, but something felt kind of off. That weekend I had a panic attack, and the night after that I was unable to sleep at my house. Things started to get really bad, I actually had to stay at my parents' house. I was feeling terrible chest symptoms: tightness, unable to breathe normally, and a general feeling of dread. My weight dropped from an already skinny 125 to 115 pounds in less than 2 weeks. Worse still, my thoughts were uncontrollable, all I could think of were my loved ones leaving me or dying in an accident. I was completely debilitated in bed crying for days. The doc put me on a sleeping pill and scheduled me for an endo appointment.
> 
> ...


OMG!!! I don't think your case is being handled properly at all! I know you are ill but I have to ask you to get copies of your most recent labs and post the results and the ranges here. We need the ranges as they differ from lab to lab.

I think you are hyperthyroid and flip flopping which is not at all unusual because there are binding, blocking and stimulating antibodies involved.

This test is very very important and I urge you to get it forthwith.

Please read carefully; there should be NO TSI in the healthy patient.

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

Here is info on blocking antibodies which will skew the thyroid panel big time because they attack the receptor sites.

blocking antibodies
http://www.suite101.com/lesson.cfm/19330/2899/4

Here is a battery of tests that are strongly recommended and by the way, as far as I know, only FNA (fine needle aspiration of a nodule) is conclusive for Hashimoto's "if" there are Hurthle Cells present indigenous to Hashi's.

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/

I am going to presume (and I should not do this) that your TPO (antimicrosomal) came back high and it is true that it is often high in Hashi's (Thyroiditis used interchangeably with Hashi's) but TPO is only "suggestive" of many things one of which is cancer.

TPO
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm

It would seem that because you are male, that ups the risk of cancer so I also urge you to get RAIU (radioactive uptake) which would be the best choice or a sonogram as the least best choice.

Do you have swollen lymph nodes in the clavicle/ neck area?

Here is psychiatric info to put your mind at ease. I too was psychotic from untreated/undiagnosed Graves' so I know all about this scenario.

Graves', neuropsychiatric
http://www.ngdf.org/cms/modules/files/uploads/7699.PDF

http://www.psycheducation.org/thyroid/introduction.htm

Please get a trusted family member to read through this stuff with you. You may need someone to advocate for you because you really really are out of sorts and that makes it difficult to concentrate and express yourself.

You are in my prayers. I hope we somehow can help you. This is a sin.


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## ELPsteel (Jul 10, 2011)

Thanks for all the helpful info! I actually did have an uptake scan done when I first went in, it revealed slightly increased blood flow to the thyroid but nothing else.

If TSI is found in the blood, then what does the patient have to do in order to combat that? I had all these tests done initially. The endo didn't have them repeated because he said we already know they're there, so we should just monitor TSH and frees. He didn't mention treatment that is dependent on TSI or TSO levels.

Thanks


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## Andros (Aug 26, 2009)

ELPsteel said:


> Thanks for all the helpful info! I actually did have an uptake scan done when I first went in, it revealed slightly increased blood flow to the thyroid but nothing else.
> 
> If TSI is found in the blood, then what does the patient have to do in order to combat that? I had all these tests done initially. The endo didn't have them repeated because he said we already know they're there, so we should just monitor TSH and frees. He didn't mention treatment that is dependent on TSI or TSO levels.
> 
> Thanks


Did you ask the doctor about the increased blood supply? In my mind, that means vascular invasion.

With TSI, one has to find the right dose of anti-thyroid med for the patient so that the patient does not go hypothyroid as you did.
http://jcem.endojournals.org/content/48/4/572.short

How much Methimazole were you taking and how many times a day and for how long? Were you getting labs about every 4 weeks?

And, do you have swollen lymph glands? Also, do you have a goiter?


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## ELPsteel (Jul 10, 2011)

I do not have swollen lymph glands or a goiter.

He said the increased blood flow is common in patients with overactive thyroid.

As far as dosage, I was on 5 mg of methimazole (1 pill each night). After 4 weeks, my levels were still not quite euthyroid, I was still slightly hyper (he described it as "subclinical" but I was actually still symptomatic). So he decided to double the dose to 10 mg (still one pill each night). I was actually feeling relatively ok after about 2 weeks or so, but soon after things just went to hell. That's when my TSH zoomed up to 82. He took me off medicine completely and my last labs came back completely in normal range, that was about 2 1/2 weeks ago (about 5 days before I started experiencing symptoms again).


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## Andros (Aug 26, 2009)

ELPsteel said:


> I do not have swollen lymph glands or a goiter.
> 
> He said the increased blood flow is common in patients with overactive thyroid.
> 
> As far as dosage, I was on 5 mg of methimazole (1 pill each night). After 4 weeks, my levels were still not quite euthyroid, I was still slightly hyper (he described it as "subclinical" but I was actually still symptomatic). So he decided to double the dose to 10 mg (still one pill each night). I was actually feeling relatively ok after about 2 weeks or so, but soon after things just went to hell. That's when my TSH zoomed up to 82. He took me off medicine completely and my last labs came back completely in normal range, that was about 2 1/2 weeks ago (about 5 days before I started experiencing symptoms again).


Thank you for the info! Okay, so now you are on nothing. Is that correct? When are you to go in for labs again?

Out of curiosity, can you please post your last lab results with the ranges included?

I would like to know what labs were run and I would like to see where everything is in the range.


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## ELPsteel (Jul 10, 2011)

Last results:

TSH: 2.230, range of .450-4.50
Free T3: 3.3, range of 2.3-4.2
T3: 98, range of 55-170
Free t4: 1.26, range of .89-1.76
T4: 9.4, range of 4.2-13.0

All appeared to be normal. I'll be going in for more labs tomorrow hopefully. I'm trying to get TPI and TPO panels added at the very least.


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## Andros (Aug 26, 2009)

ELPsteel said:


> Last results:
> 
> TSH: 2.230, range of .450-4.50
> Free T3: 3.3, range of 2.3-4.2
> ...


Interesting and I thank you for posting all of this.

It looks like you are most certainly calmed down and leaning towards hypo.

I hope you can get the TSI (thyroid stimulating immunoglobulin)and the TPO (antimicrosomal) lab tests. That would be a good thing. Very good.

Good luck tomorrow!


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## ELPsteel (Jul 10, 2011)

Yeah, the numbers certainly look normal don't they? I just don't understand why I feel so unlike myself...


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## ELPsteel (Jul 10, 2011)

Ugh, talked to my endo's office today. He's on vacation but will be back wednesday, however the other physicians in the office looked at my charts and basically refused to add TSI, TPO and ANA tests because they deemed it not necessary based on my charts. They told me I can wait until Wednesday to talk to my endo. This is very frustrating, as it postpones everything further - I was going to get my blood drawn today for some immediate results. I don't understand the problem with simply adding a few panels to a lab I'm already getting anyway.

But rather than rush into things and get my blood drawn without the proper tests, I'm just going to wait to talk to him. Unfortunately he might not even want to add these tests. We'll see.


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## ELPsteel (Jul 10, 2011)

Endo finally talked to me today. He said I don't need TSI or TPO, since I've already been tested months ago. My TSI is within normal, while my TPO is high, which I knew already. He said that the TPO can go down, but it will most likely stay where it is, meaning that I can go hypo in 10 years or so and need yearly tests. He also doesn't think that my symptoms are thyroid related because I just had tests done a few weeks ago and they were normal.

So I'm just going anyway to get TSH and my frees. If they come back normal, I'm probably going to have to see a psychiatrist =/


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## Andros (Aug 26, 2009)

ELPsteel said:


> Endo finally talked to me today. He said I don't need TSI or TPO, since I've already been tested months ago. My TSI is within normal, while my TPO is high, which I knew already. He said that the TPO can go down, but it will most likely stay where it is, meaning that I can go hypo in 10 years or so and need yearly tests. He also doesn't think that my symptoms are thyroid related because I just had tests done a few weeks ago and they were normal.
> 
> So I'm just going anyway to get TSH and my frees. If they come back normal, I'm probably going to have to see a psychiatrist =/


If I were in your shoes, I think I would find a new doctor STAT. And you don't need an endo. What you need is a doctor who cares about getting you well.

You have TPO, you have TSI.....................................that is "autoimmune" and I don't care what anybody says. TSI (thyroid stimulating immunoglobulin) is indigenous to the thyroid. TPO (antimicrosomal antibodies) are suggestive of many disorders, thyroid being one of them and most usually at the list (Thyroid Peroxidase (TPO) Antibody. What could be plainer?


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