# What is going on with these Antibodies, and stuff?



## Monarcher (Feb 7, 2017)

Okay, so I'm going to toss these on here and then ask some questions. 
Ref. Ranges for TSH .4-4.5, FT4 .8-1.8, and FT3 2.3-4.2, unless otherwise noted.

1/9/16
TSH 4.6
FT4 .9
FT3 2.8 Synthroid started 25mcg
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2/3/16
TSH 3.52
FT4 1.1
FT3 3.0
TGA >1000 REF. <OR=1IU/mL
TPOAB >900 REF. <9 Iu/mL Nature-throid started 32.5 after having chest pain and PVC'S along with anxiety, agitation, and racing thoughts with Synthroid.
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7/20/16
TSH 4.28
FT4 1.1
FT3 3.3
TGA 997 REF. <OR=1IU/mL
TPOAB >900 REF. <9 Iu/mL
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9/18/16
TSH 1.63
FT4 .61 REF .61-1.24
FT3 N/A (hospital never published result !?!)
These labs were taken in ER visit Due to fainting, dizziness, chest pain, very high BP 148/118, & pvc's
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9/24/16
TSH 3.12
FT4 .72
FT3 3.5
THYROGLOBULIN 1.9 REF. 1.6-50 NG/mL
Anti-thyroglobulin Ab 1078 REF. <or=4
These labs taken at GP follow up a week after ER
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10/16/16 Switched to WP-THYROID 32.5
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1/24/17
TSH 3.33
FT4 1.0
FT3 3.6
TGA 911 REF. <or=1 iu/mL
TPOAB >900 REF. <9 IU/mL
TBII <6 REF. <16%
TSI 68 REF. <140%
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Okay so, I'm currently 37 y/o. when I was 20 y/o I was diagnosed with Graves'. Long story. Ended up "euthroid" however no antibodies were tested since initial diagnosis. Just tsh! Ended up having a lot of heart problems about 10 years ago (trigeminal pvc's regularly-irregular x20,000+/day.) Was scheduled to have an ablation procedure on sinus nodes but issue magically dissapeared. Was told I was euthroid and it was not my thyroid causing problems.

Started to decline. Fuzzy, depressed, no energy, joint pain, emotional. Again, "euthroid". One doc had me do an ultrasound- "hypervascularity indicative of history of Graves'disease." That was it. Nothing to see here- take an anti-depressant.

Lots of ups and downs since.

Discovered antibodies during pregnancy almost 3 years ago indicating hashi's.
Since son's birth- getting my levels right has been impossible. 3 mos postpartum I was EXTREMELY hyperthyroid- went off synthroid right away. 1 month later my tsh was 12.7.

I can't take synthroid AT ALL! My doctor just increased my dose of Nature-throid (was supposed to be wp-thyroid but pharmacy screwed up) to 48.75 on 1/25/17.

Now, I'm a slug. I'm soo exhausted. And I'm edgy and emotional. No heart issues though! My house is getting kinda messy. I'm having migraines every night. My vision slips out of focus because I'm staring off into space. Throat feels tight. My voice is scratchy. I can't find words. I can't keep a train of thought. I'm scared!! And I gotta be okay for my little guy.

I asked my doc about those TSI antibodies. She seems to think it's normal-ish? I asked about maybe having an ultrasound to get a clearer picture of what's going on. But she didn't respond to that.

I don't know what to do. I don't know who else to talk to, what other tests. But I'm REALLY struggling!!!any advice or insight guys?? You have no idea how much I appreciate it.
Thank you.

PS I am sorry about my typos and misspelled words. My brain isn't working.


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## joplin1975 (Jul 21, 2011)

Have you had a thyroid ultrasound?


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## Monarcher (Feb 7, 2017)

@joplin1975

I wrote my Doc once the results came in and asked what implications (if any) the antibodies had, and whether they were noteworthy considering my history of med intolerance, heart issues, and previous diagnosis of Graves. Also asked if an ultrasound may help to clarify the issues I'm having.

She said my results were in-range and normal, "Rarely antibodies can change and at times you can be making graves antibodies more than hashi's antibodies and then you would be hyperthyroid. And perhaps that is what happened to you in the past. But at the present it is consistent with Hashimoto's."

She never addressed my question about ultrasound.


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## joplin1975 (Jul 21, 2011)

Well, I don't think repeating antibodies testing at regular intervals really helps much. Once you have them, you have them and it all indicates some kind of autoimmune dysfuntion.

Having any kind of TSI makes stabilizing on meds damn near impossible.

I asked about the ultrasound because 1) everyone with an autoimmune condition should have a baseline ultrasound. It's also recommended that thyroid patients have follow up ultrasounds every so often to make sure things haven't changed. More importantly, 2) your thyroglobulin results really demand an ultrasound. If you have thyroid cancer, there's no point in fiddling with the meds until you have addressed that first.


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## Monarcher (Feb 7, 2017)

Oh super! Lol

My husband just was treated for Thyca. He had stage 3 due to one of the masses being 6cm.

I think after all these years, and all this drama - i just want it out! I know, I know it can be hard to feel "normal " again after thyroidectomy. But, i dont see much normal at this point anyway.

I just don't know how to ask for an ultrasound again without annoying my doctor. Maybe I shouldn't worry about that.

Just out of curiosity- would a partial thyroidectomy potentially help I wonder?


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## joplin1975 (Jul 21, 2011)

Doubtful. With your high antibodies, leaving half the thyroid in would mean there is still tissue and you'd still have antibodies.

Have you consulted with an ENT or other surgeon?


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## Monarcher (Feb 7, 2017)

I have not consulted with an ent surgeon. Would they even consider my issues without the input of an endocrinologist? Also, how would I approach the topic of- "So, my Endo thinks I'm fine but I think u should remove my thyroid."?

I can see whoever without a referral, thankfully. But I have no idea how/what I'm dealing with. Should I be posting over in hashitoxicosis? Is this something different? I donto understand what these Antibodies together mean.

I do think I should have an ultrasound or some kind of scan, but what will they potentially show docs?


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## joplin1975 (Jul 21, 2011)

It will show if there are any structural changes. If you have nodules and said nodules are over 2cms, surgeons can usually get clearance from insurance to do the surgery. And, any good surgeon wouldn't make a decision about surgery OR go into surgery without a neck ultrasound.

I would just find an ENT who has extensive experience with thyroids. Then tell him or her that you feel poorly, can't seem to stabilize on meds, and you would like their opinion on how to proceed.

Endos are pretty well-known for treating thyroid patients like crap. You need not come up with a long list of reasons you want a second opinion. After all, you will be paying them!


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## jenny v (May 6, 2012)

Agreed, I suffered for years with high antibodies and thyroid swings, but it wasn't until I saw an ENT that things started progressing. My endo would have kept my thyroid in until I was barely functional, if she had had her way. By the time the ENT removed it, it was just a mass of scar tissue from years of issues.

Do you have any issues like hoarseness, sore throats, coughing, choking, clearing your throat, etc.? Those would be something to mention if you decide to see an ENT.


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## Monarcher (Feb 7, 2017)

@Jennyv thanks. That's really helpful as far as getting it together for "what brings you here today?". I will try to get in with somebody.

I hate that we have to go through this crap to get help! I've been on this crazy train almost 20 years. Unreal. It's so beyond "advocating" for yourself.

I just dropped a note to an endocrinologist I saw for one visit before I relocated. She told me if my levels kept fluctuating, she would want me to have it taken out because of the difficulty with med management as well as long term health issues caused by the swings. She also did NOT want me to have RAI in that case, because my son is so young.

She was kind of upset by how my thyroid was managed during and after my pregnancy. Thankfully my little guy is healthy and strong.

I will travel back there to see her if I have to.

I'm sure you all know how it is. I can't tell you how many PCP's got it wrong, specialists who have gotten it wrongo etc. It's a nightmare. A never-ending flippin nightmare.

I'd like to one day be healthy enough to have a second child. Or at least consider it! I've lost enough over the years. Not trying to be woe-as-me, but seriously...

Thank you all so much for the feedback. It's helping me to plod along.


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## Monarcher (Feb 7, 2017)

UPDATE:

I emailed my current Endo's office. She called me back within the hour and wants to get me back on WP-THYROID. And do 2 doses of the 32.5mg, one in AM and one in PM. So, i guess 65mg total.

I was just upped from 32.5 to 48.75 of WP-THYROID when my symptoms got much worse this week. My pharmacy had filled it as Nature-throid... since they and my insurance think both are the same drug! My docs office said i should go ahead and start taking it since I was almost out of medicine.

Does anyone think the med switch is responsible for this (sudden exacerbation of symptoms)- if so, why? I don't understand it.

As usual, I'm terrified that my heart symptoms are gonna flare up. But I've got my beta blockers so...fingers crossed.

I asked her if she thought my hashi's antibodies are crazy high. She said "well, yeah- they can only test up to 900 so yes they are extremely high." I asked if she thought we should do ultrasound so we could get a better picture of what it's looking like in there. She went ahead and put in the order!!

I've had to be a squeaky wheel this week. I hate bugging all these docs. But I'm in a state.

Don't know what I'm hoping they find in there. Will they be able to tell if it's hashi's AND graves, or differentiate between the two? I hope I won't need an FNA. I've heard they suck.


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## jenny v (May 6, 2012)

The way to tell Hashi's or Graves is with blood tests, not an ultrasound (although an FNA can also tell). Have they ever run a TSI test on you? An ultrasound will show any structural issues such as swelling or nodules; if a nodule is over 1cm, they will typically do a biopsy.


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## Monarcher (Feb 7, 2017)

Yes, my TSI came back at 68 ref. <140%.TBII came back <6 ref <16%.


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## Lovlkn (Dec 20, 2009)

Inability to stabilize on thyroid medications can be reason enough to remove - I had 4.5 years of records to back this up.


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## jenny v (May 6, 2012)

Agreed. You've got antibodies for both Hashi's and Graves (even if those aren't "high" amounts), so it will probably be difficult to stabilize on meds with your thyroid. I was in a similar boat and had hyper and hypo swings for years while my endo tried to hang onto my thyroid. Your poor thyroid is pretty much constantly under attack from both sides.


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## Monarcher (Feb 7, 2017)

Okay, I see that my TSI antibodies are below 140%. Do most people truly have zero TSI antibodies?

Also, when my TSH dropped suddenly to 1.6- no change to medication- i ended up in ER due to blood pressure, fainting, PVC'S, chest pains etc. But, TSH of 1.6 see s like a good thing! Man I wish I could get my hands on the FT3 they ran...

That was a few months back... I wonder if the TSI would've been higher had i been tested a few weeks after the episode?

See, if the heart stuff happens again- I want to catch that TSI while it's up there! Do any of you guys know the best window of opportunity to do that? While acute? Within a few days/weeks etc? I want proof-in-hand!

Why? Because I don't want to be mismanaged because it's "rare", or "unlikely". When these heart episodes happen- it feels like I'm going to maybe die. And I am very worried that over time this is going to take its toll. I'm already down to 35-40% LV ejection fraction.

Thank you all for helping me out!


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## joplin1975 (Jul 21, 2011)

> Do most people truly have zero TSI antibodies?


Yes. People without thyroid dysfunction have 0% TSI. Many doctors won't acknowledge it, but that's the case. I'll see if I can find you a literature citation.

Trying to "catch" your antibodies at a particular level is going to be really, really tricky. I don't know how you'd do it, honestly...


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## graves84 (Oct 7, 2013)

I had a similar background-I was Graves and am now Hashi's. NDT does not agree with me either. I got severe high BP, palpitations and high pulse resting even with in range labs. That stuff is dangerous & nearly killed me. I'd get off it asap and get something better regulated.


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