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Old 01-31-2013, 06:27 PM   #1
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Question what about hashi's with TSI?

Hello all!

What do you guys know about the presence of some TSI but not out of range levels? Here is my most recent lab on 75mcg Tirosint:

TSH <0.1 L (0.3-4.8)
FT4 1.1 (0.8-1.5)
FT3 3.5 (2.0-4.4)
Thyroid peroxidase 1023 H (0-34)
Thyroid stim immunoglobulin 54% (0-139)

Diagnosed with Hashi's last June with TPO of 570. The TSI was drawn because of continued complaints by me of tachycardia, anxiety, and occasions of tremors. Also prior to being on 75mcg, I was on 88mcg and my labs on this were TSH <0.1 and FT4 of 1.8 (same range as above). All previous labs had been either hypo or euthyroid.

Any insight would be greatly appreciated!! Thanks so much!

 
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Old 02-02-2013, 04:28 PM   #2
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Re: what about hashi's with TSI?

Anybody? I saw the endo yesterday and he was not going to even mention the TSI results but I asked anyway and he said that people without thyroid disease should have no TSI but he stated that obviously my tpo is "winning" at this time. When I asked him if the TSI I have could play a part in my tachycardia and tremors he said maybe or it might just be flashes of stored t4 being released in bloodstream due to thyroid damage from the hash is.

Then he flipped focus on me and ordered a pituitary MRI because my tsh being suppressed does not correlate normally with my free t results. I have some understanding of central hypo but I just don't know if I really need the MRI because we know I have hashis he even said that is undeniable. I just think that he doesn't give thought that tsh can be all over the place and change rapidly especially with active hashis. What do you think? Do I need the MRI? Or should I wait and see if my tsh stays suppressed next blood draw?
Btw, my primary doc looked at these same values and said yes the tsh is maximally suppressed but that's ok because your t's are ok. So my two docs don't see it the same way either.

 
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Old 02-02-2013, 10:33 PM   #3
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Re: what about hashi's with TSI?

I've never had these particular issues, so I'm not the best source of information about them. But there have been others here, past and present, who do and are. Hopefully, one or more will weigh in here shortly.

The TSI antibodies can indeed play havoc, causing hyper symptoms and inaccurate TSH readings.

I think your endo's assessment is pretty good about most of it. Just my lay opinion, though, that he's probably jumping the gun on an MRI. Unless you have other non-thyroid hormonal issues, you probably don't have pituitary trouble. If it were me, I'd resist the MRI, at least for the time being.

Interestingly, some researchers theorize that autoimmune thyroid disease is just one disease, and that Graves' and Hashimoto's are just polar extremes of the same disease. They reason that one set of antibodies 'wins out' in the end, and the permanent result is one or the other. There have been board members here with both Hashi's and Graves' ABs, who flip-flopped from hyper to hypo for years until things settled down.
Again... I hope you'll hear from someone better versed on this than I.
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Last edited by midwest1; 02-02-2013 at 10:34 PM.

 
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Old 02-02-2013, 11:53 PM   #4
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Re: what about hashi's with TSI?

I have exactly the same thing. I have Hashi's and TSI antibodies. My TSI is in range but I still have them. I also have tachycardia, tremors, hot flashes etc. The reason they tested my TSI is because I got a mild case of thyroid eye disease when I was overmedicated with t3. It was horrifying!!! I am fine now, eyes look normal, but what a roller coaster! Anyway, what I have discovered after going to many doctors is that they just don't know enough about thyroid disease! I wish I could be more help to you, but I just take my Synthroid and Cytomel and hope I have a good day. If I eat right, get plenty of rest and exercise I feel normal. Hopefully, that helps a little!

 
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Old 02-03-2013, 06:13 AM   #5
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Re: what about hashi's with TSI?

Thank you both for your insight. I agree with you Midwest that the MRI is jumping the gun, as I do not have any other hormonal probs going on that we know of and I don't suspect any. If the wonky tsh and free t's continue then I am all for it.
Sandy-what a rollercoaster ride to have both, huh? I am just so sick of not knowing how I am going to feel one hour as opposed to the next. I think that I have had some mild Ted too in the past but my eyes were acting up in the very beginning when being diagnosed and I didn't know enough then to push the subject. I had so many other symptoms to report that the daily red eyes and extreme light sensitivity didn't get looked in to.
I am just wondering if I should push for tt since it is inevitable that I will end up with a dead thyroid and it could take years of this swinging around and being miserable. I mentioned this to the endo and his response was that he would not
advise that right now because too much inflammation with the hashis makes the
risk outweigh the benefits. I may seek a second opinion on that because I know there are others who have had a tt because of out of control hashis.

 
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Old 02-03-2013, 11:24 AM   #6
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Re: what about hashi's with TSI?

Quote:
Originally Posted by naturegal76 View Post
Thank you both for your insight. I agree with you Midwest that the MRI is jumping the gun, as I do not have any other hormonal probs going on that we know of and I don't suspect any. If the wonky tsh and free t's continue then I am all for it.
Sandy-what a rollercoaster ride to have both, huh? I am just so sick of not knowing how I am going to feel one hour as opposed to the next. I think that I have had some mild Ted too in the past but my eyes were acting up in the very beginning when being diagnosed and I didn't know enough then to push the subject. I had so many other symptoms to report that the daily red eyes and extreme light sensitivity didn't get looked in to.
I am just wondering if I should push for tt since it is inevitable that I will end up with a dead thyroid and it could take years of this swinging around and being miserable. I mentioned this to the endo and his response was that he would not
advise that right now because too much inflammation with the hashis makes the
risk outweigh the benefits. I may seek a second opinion on that because I know there are others who have had a tt because of out of control hashis.
I am not an MD BUT I have a lot of family members with this issue. I am a third generation confirmed autoimmune thyroid disease sufferer. My mom has it all four of her sisters have it, her mom, her grandma, and her great grandma had a grapefruit sized goiter at death ( We suspect thyroid issue there as well ). 60% of our family have both Hashimotos and Graves' disease. We however tend to have positive levels of both Hashimotos and graves antibodies.

What does this mean? I discuss it extensively in my thyroid care and concern thread series. In a nut shell you either have a tendency toward Hashimotos or graves dominant traits. As time goes by Hashimotos will win out. Why? It destroys the thyroid tissue eventually over time leaving nothing for the TSI and TRAb to stimulate into hyperactive production.

Living with both active graves and Hashimotos is best described as living in hypothyroid hyperthyroid turf war. Hashimotos activates and attacks the thyroid tissue when TG or TPO are trigger in the thyroid tissue to transport and synthesize thyroid hormone. The TPOAb and TgAb release attack and destroy the thyroid tissue preventing further synthesis and production for the destroyed tissue. So in the case of both antibodies... TSI and TRAb excite yu thyroid to over produce... The Hashimotos TGAb and TPOAb yell kamikaze attack your thyroid and cause an immediate dump and release of stored t4 from the destroyed thyroid tissue. End result hyperthyroid and hypothyroid roller coaster. You can have dramatic rises and falls in thyroid hormone that flux week to week or day to day.

When my TPOAb and TGAb levels combined were 10,000 and my TSI-TRAb levels were only 1000. I lived in thyroid hell. I would wake up hypothyroid and by lunch feel so hyper I wanted to crawl out of my skin. The only fix for me was medication suppression of my thyroid function. If it does not need to trigger TPO and TG to move and synthesize hormone the Hashimotos takes a slower attack tactic on the thyroid. The TSI levels dropped as well. Into the one hundreds, it has been seven years now on meds for me. I still get the occasional hyper spell for a brief period, but it is all manageable.

Two of my aunts and my mom had to have their thyroid a removed. They wished it had been done right off. No thyroid and the antibodies are almost out of the picture. As a whole after two aunts had to have repeat rais and finally surgically removal of the thyroid because the rais don't cure autoimmune thyroid disease.... We flat out refuse any suggestion of rai as a treatment for hyperthyroidism. We advocate medication first and then surgical removal of the offending gland.

It takes time. Slow adjustments. Constant blood work and monitoring of both ft3 and ft4 levels in addition to watching your thyroid autoimmune antibody levels. Now I check mine once a year. Early on I was checking them quarterly and man could they swing. They had to have their own band. Because I couldn't follow the beat of their own music.

I do not know if this helps. But you are not alone and if you have any specific questions yu want to ask me feel free!

Sincerely,
MG
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Old 02-03-2013, 12:35 PM   #7
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Re: what about hashi's with TSI?

So many thanks! Only fellow thyroid peeps truly know how miserable it can make us feel. So MG, when you say that what helped you is just letting the medication suppress your own thyroid thus making it inactive does that mean that your doctor lets you keep a suppressed tsh according to the range so long as your free t's are good? Because my endo said he would decrease my dose after my next labs in six weeks if that tsh doesn't come up. However, my free t's were at 42 and 62 percent. I am afraid a decrease would be bad news for me. I think he just verified to me that he is a tsh only watcher.

My primary doc stated that the suppressed tsh is fine since the free t's are okay. I think my primary doc is going to be my better ally. Again, I thank you guys for sharing. I will look over your thyroid care and concerns mgbrook.

 
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Old 02-03-2013, 03:51 PM   #8
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Re: what about hashi's with TSI?

Yes ma'am. My FTs sit in the 70% range and my TSH is rarely looked at anymore. My md thinks the test is a waste of blood in my case. Last TSH I had was 0.03. Even with low FTs in the 10% - negative 20% my TSH never got above 2.1. This is a family thing. My aunts post thyroidectomy never broke a TSH of 4. This is before supplementation. For some reason our family pituitary glands lie when it comes to TSH. I wish my scale would do that....

MG
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Old 02-06-2013, 08:46 AM   #9
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Re: what about hashi's with TSI?

Mg, did any of your doctors every suspect or check your for pituitary problems with a suppressed TSH and normal range FT's? That's my confusion right now. I understand the possibility of having both hashis and TSI messing with the TSH and causing inaccurate results, but I also read that with pit problems, you could see suppressed TSH and in range (normal) FTs.

 
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Old 02-06-2013, 10:13 AM   #10
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Re: what about hashi's with TSI?

Yes. I had an MRI done. It showed nothing. The thyroid antibodies are TSH suppressants. In addition if you have a conversion issue where you do not produce enough cortisol and as a result you have higher levels of t3 than t4 that results in an additional TSH suppression factor. The true indicators of thyroid health are your actual thyroid hormone levels and your resulting symptoms. The TSH is a remote indicator of thyroid health. It is like a teacher watching over a play ground full of kids. It is not going to catch everything. Especially when you throw in additional kids like TSI, TPOAb, TRAb, TGAb to run about and confuse things. It won't hurt to have an MRI. I had so many diagnostic tests to begin with cardiac stress tests, the POTS tilt test, adrenal stress test, MRI, spinal tap, eye exams and photos... And many more. What did it reveal?

My thyroid was bad with a single 9mm spherical nodule and they took so long to treat the thyroid that my adrenal gland cortisol production mechanism failed. So the endocrine system is a series of very complex feed back loops. The pituitary gland, thyroid, and adrenal glands are tightly linked. If one thing breaks in the chain it can have disasterous results. Unfortunately in the case of autoimmune thyroid issues, well our own immune system wages gorilla warfare on us. It is really hard to catch them in the act, because by e time you manifest symptoms, your bady may be transitioning to a different stat and not show it in the blood work.

I can not tell you to get an MRI or not. It is a long restful process. I fell asleep during mine. Another thing in my favor is an allergy to the iodine and cobalt injectable dyes. So that restricts some of the viewing possibilities with remote scans.

Have you looked up the causes of pituitary failure? If you are not at risk for those, you may want to press for an alternate route first.

I truly wish you the best of care.

Good luck.

Sincerely,
MG
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Old 02-12-2013, 05:15 PM   #11
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Re: what about hashi's with TSI?

You can have "not out of range" TSI and still have it affect your TSH, especially with Hashimoto's. Would cause your symptoms of sinus tach. I had the same problem. I went from my GP trying to treat me by raising my meds a little at a time to seeing an endo, who said that often, it is not good to raise meds a little at a time, rather increase significantly to keep TSH levels within normal range. This will help reduce your TSI. Your TSH is on the high side, which causes the hyper symptoms with your heart. Often it is beneficial to look at suppression therapy in order to get to a permanent hypo state and then regulate to one strength of replacement hormone. I didn't have to think twice about suppression. I have been symptom free for over a year now.

 
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Old 02-12-2013, 06:13 PM   #12
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Re: what about hashi's with TSI?

Quote:
Originally Posted by trisbee View Post
You can have "not out of range" TSI and still have it affect your TSH, especially with Hashimoto's. Would cause your symptoms of sinus tach. I had the same problem. I went from my GP trying to treat me by raising my meds a little at a time to seeing an endo, who said that often, it is not good to raise meds a little at a time, rather increase significantly to keep TSH levels within normal range. This will help reduce your TSI. Your TSH is on the high side, which causes the hyper symptoms with your heart. Often it is beneficial to look at suppression therapy in order to get to a permanent hypo state and then regulate to one strength of replacement hormone. I didn't have to think twice about suppression. I have been symptom free for over a year now.
im hearing two conflicting things. ive been told to increase slowly to 12.5 mcg each time instead of 25 mcg each time to be careful to not bypass the euthyroid state. how should we be upping our meds? with t4, must wait 6 weeks then up meds again. depending on what med you take of course, i take synthroid and barely just got to 50 mcg. but feeling so HYPO. i know, i could feel better! i do have tsi as well. 89% (<140%) what meds do you take, trisbee?

 
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Old 02-12-2013, 06:33 PM   #13
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Re: what about hashi's with TSI?

I am on 112mcg Synthroid. I had bad symptoms in the beginnig. ER several times with sinus tach. Left the ER wth diag of hypo. TSH was 13.41. Went straight to GP and he dismissed me but reluctantly prescribed levoghyroxine 25mcg. Over the next eight months my tsh was tested every six weeks but even with low levels he would only raise my dose to the next level. When i got tired of dealing with back and forth symptoms of hashi, i found an endo. My tsh was only 8.61 after haing my levo increased 4 times. I went to 112mcg brand and everything leveled out. Of course after not having metabolism for so long, i actally had not been tolerating having the hormone in my system, so i also take low dose beta blocker to slow my heart rate a little. This is common with hashi patients. It has drastically improved my quality of life considering where i was two yrs ago.

 
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Old 02-12-2013, 06:49 PM   #14
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Re: what about hashi's with TSI?

One important thing to remember is that with hashi, you have developed TPOs. You can get to euthyroid state, but chances are, you will be constantly fighting to stay there, because your immune system has already turned against your thyroid tissue. That cant be reversed. This is how my endo explained it to me and it made sense. Total supression and regulating quickly to one strength is most often the course of treatment that works.

 
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Old 02-12-2013, 07:17 PM   #15
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Re: what about hashi's with TSI?

Quote:
Originally Posted by trisbee View Post
One important thing to remember is that with hashi, you have developed TPOs. You can get to euthyroid state, but chances are, you will be constantly fighting to stay there, because your immune system has already turned against your thyroid tissue. That cant be reversed. This is how my endo explained it to me and it made sense. Total supression and regulating quickly to one strength is most often the course of treatment that works.
how do you achieve that? or how have you achieved that? My endo is clueless and I'm looking to find another doctor who's got a clue!\

-- crap, just saw your post above the last post!

Last edited by fresnogirl; 02-12-2013 at 07:18 PM. Reason: adding more thoughts

 
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