# New to board...advice?



## surge (Aug 15, 2012)

Hi all. I'm Shelley. Two winters ago, I noticed thinning hair right at the hair line and gained some weight. My PCP said it was probably female balding but did order a tsh, and the number was slightly elevated, so they watched it until July, when it went up to 8 and I went on 50mcg levothyroxine. Things were great-- hair grew back, lost weight, could remember names-- until January when I bottomed out again and they raised my dose to 75mcg. In February, I felt great, but my TSH was still 4, and my doc said, if we were giving me thyroid meds, my TSH should be much, much lower, so she bumped me to 88mcg. By April, I was feeling slow and saw the same tell-tale hairloss at the front again. My tsh looked great, though, so we kept the same dosage and within 6 weeks, I was having spikes of feeling of hyper-- massive shedding, racing heart, weight loss. It's been kind of a nightmare ever since. I keep getting small rounds of shingles, have to take ambien to sleep. I would feel like I was really, really hyper, but my tests all pointed to hypo. I hated taking the meds every morning because they sure didn't feel like they helped and I was worried they were feeding the effects.

I was finally referred to an endo two weeks ago since my PCP thought I had hashis. The endo said part of my problem was the generic, so she put me on a low dose of Levoxyl (25mcg) with a plan to build up slowly over time and she ordered labs, which did show a whole lot of antibodies for Hashis (TAB number below)

My most recent labs: 
TSI 96% (range 110-, negative; 111+, positive)
TAB 1029.3 (0-9.0)
TSH 5.62 (.358-3.740)
T3, Free 2.60 (2.18-3.98)
T4, Free .92 (.76-1.46)

I do have several nodules on both sides of the thyroid, and we did do a baseline ultrasound. None of the nodules were very big.

This summer, I went off all meds for two weeks, before that, I'd been on 50mcg of generic (and the labs above are after being off the generic for 10 days).

I'm having, crazy, crazy hair loss-- with some hair regrowth. I suspect it'll fill back in, if it'll ever stop shedding. Some symptoms like leg pain and racing heart are mostly better after 10 days on 25mcg of levoxyl, but I just feel sad, overwhelmed, like I'm going to somehow do the wrong thing or waste my time being on the wrong med. Any tips or advice? My plan right now is slow-and-steady...just trying to give this med a chance to work, but there are so many bad synthetic T4 stories out there, it kind of adds to my anxiety.

I'd love to hear more about people with Hashis and what routines seemed to help OR what you wished you'd known earlier on in your journey...thanks for the board and thanks for any feedback you can offer.


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## joplin1975 (Jul 21, 2011)

The TSI is the really nasty one...

But both your free t3 and free t4 seem kinda low to me. I'll defer to the bloodwork experts, but I don't doubt you feel poorly.

Might you have a copy of the u/s report available to post?


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## Andros (Aug 26, 2009)

surge said:


> Hi all. I'm Shelley. Two winters ago, I noticed thinning hair right at the hair line and gained some weight. My PCP said it was probably female balding but did order a tsh, and the number was slightly elevated, so they watched it until July, when it went up to 8 and I went on 50mcg levothyroxine. Things were great-- hair grew back, lost weight, could remember names-- until January when I bottomed out again and they raised my dose to 75mcg. In February, I felt great, but my TSH was still 4, and my doc said, if we were giving me thyroid meds, my TSH should be much, much lower, so she bumped me to 88mcg. By April, I was feeling slow and saw the same tell-tale hairloss at the front again. My tsh looked great, though, so we kept the same dosage and within 6 weeks, I was having spikes of feeling of hyper-- massive shedding, racing heart, weight loss. It's been kind of a nightmare ever since. I keep getting small rounds of shingles, have to take ambien to sleep. I would feel like I was really, really hyper, but my tests all pointed to hypo. I hated taking the meds every morning because they sure didn't feel like they helped and I was worried they were feeding the effects.
> 
> I was finally referred to an endo two weeks ago since my PCP thought I had hashis. The endo said part of my problem was the generic, so she put me on a low dose of Levoxyl (25mcg) with a plan to build up slowly over time and she ordered labs, which did show a whole lot of antibodies for Hashis (TAB number below)
> 
> ...


You are having a hard hard row to hoe here. I am sorry.

My very first thought is that FNA of one of those nodules would be in order. Such high Thyroglobulin Ab could indicate cancer.

Thyroglobulin Ab and cancer
http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf

Second thought is your TSI is through the roof so "why" are you on any thyroxine replacement at all? Tch!

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

You probably also have antibodies that are blocking and or binding the receptor sites thus skewing the TSH, FT3 and FT4 results.

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

TBII (Thyrotrophin Binding Inhibiting Immunoglobulin)
http://www.ncbi.nlm.nih.gov/pubmed/1969138 (good test for TSHR)

Trab (Thyroglobulin antibody) TSH receptor antibody
http://jcem.endojournals.org/content/83/11/3781.full


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## surge (Aug 15, 2012)

Thanks for the feedback. This gives me some good follow-up questions to ask about TSI and biopsy, but all my nodules are very small so I think my endo feels like it would be too hard to actually get at 'em. I am confused about the TSI and what it means.

I do feel myself revving back up again-- loud heartbeat, massive shed, sleeplessness-- but I guess I thought this was part of Hashis? That there are times when you spike and times when you don't. I've never had a test come back and look hyper on the page. Even when I'm shaking/vibrating and so anxious it hurts to sit still. My tests all still look hypo.


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## joplin1975 (Jul 21, 2011)

Layman's terms...the TPO (TAB) means your thryoid is being attacked, but it doesn't say by what. While under attack, your thyroid slows down, so in comes the TSI (a stimulating hormone) to rev it back up again. So you are constantly cycling up and down and up and then down again.

If the nodules are too small to biopsy, you might inquire about a radioactive iodine uptake scan.


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## surge (Aug 15, 2012)

joplin1975 said:


> Layman's terms...the TPO (TAB) means your thryoid is being attacked, but it doesn't say by what. While under attack, your thyroid slows down, so in comes the TSI (a stimulating hormone) to rev it back up again. So you are constantly cycling up and down and up and then down again.
> 
> If the nodules are too small to biopsy, you might inquire about a radioactive iodine uptake scan.


So is this the 'typical' Hashi's cycle that most people talk about/experience?


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## joplin1975 (Jul 21, 2011)

Pretty much but your TSI and TPO numbers are really quite high...so it may be a little more than the "typical" cycle.


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## surge (Aug 15, 2012)

Okay, I just left a message for my endo's nurse about why I'm on Levoxyl if I have TSI in my system. It'll be good just to check in on that. I appreciate the tip.


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## Andros (Aug 26, 2009)

surge said:


> Thanks for the feedback. This gives me some good follow-up questions to ask about TSI and biopsy, but all my nodules are very small so I think my endo feels like it would be too hard to actually get at 'em. I am confused about the TSI and what it means.
> 
> I do feel myself revving back up again-- loud heartbeat, massive shed, sleeplessness-- but I guess I thought this was part of Hashis? That there are times when you spike and times when you don't. I've never had a test come back and look hyper on the page. Even when I'm shaking/vibrating and so anxious it hurts to sit still. My tests all still look hypo.


Because of those other antibodies. I hope you read the links I furnished. That should clear things up in your mind.


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## surge (Aug 15, 2012)

Hi, Andros. I did click through the links you provided. Thank you for the information. The TSI definition/explanation one was succinct and helped me with the message I left for my doc. The cancer one, I'll admit, I need a little more time and concentration to sift through. The other ones seem to point to the idea that I do also have Graves? I kind of thought that was the one bit of good news to come out of my crappy summer. At least I don't have Graves, too!. Ha. So it seems like in general what I should be asking for is more information on the structure of the thyroid itself-- more than the process-- and those nodules. A FNA to rule out cancer, in particular.

I don't have a copy of the u/s, but I can probably get one. This practice is great about giving me copies of everything...


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## joplin1975 (Jul 21, 2011)

For what it's worth, I don't think your endo is necessarily wrong for doing a trial of levoxyl. If you could tolerate it, it might calm stuff down enough that the antibodies simmer down. But, I think it's worth noting why it doesn't work...and it sounds like its headed that way.

There's criteria for Graves...I don't know the criteria, but you could look it up. My gut says you don't have it, but who knows. I had high TPO and high TSI and I was a disaster on synthroid. To quote my husband "it's like living with a meth addict." 

You do really need to rule out cancer, and the first steps to do that are to look at the structures of the nodules. You might want to ask to have your thyroglobulin drawn too, just for your information. Also, you might want to take a peek into the hashitoxocisis forum...I would bet some of the stories resonant with you.


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## Andros (Aug 26, 2009)

surge said:


> Okay, I just left a message for my endo's nurse about why I'm on Levoxyl if I have TSI in my system. It'll be good just to check in on that. I appreciate the tip.


Please let us know. Dang! Some things are just unbelievable.


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## Andros (Aug 26, 2009)

surge said:


> Hi, Andros. I did click through the links you provided. Thank you for the information. The TSI definition/explanation one was succinct and helped me with the message I left for my doc. The cancer one, I'll admit, I need a little more time and concentration to sift through. The other ones seem to point to the idea that I do also have Graves? I kind of thought that was the one bit of good news to come out of my crappy summer. At least I don't have Graves, too!. Ha. So it seems like in general what I should be asking for is more information on the structure of the thyroid itself-- more than the process-- and those nodules. A FNA to rule out cancer, in particular.
> 
> I don't have a copy of the u/s, but I can probably get one. This practice is great about giving me copies of everything...


Sooooooooooooooooooo glad this board can be a help to you!! And if you get those copies, I know we would like to see them.


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## surge (Aug 15, 2012)

I talked to the doc yesterday (mine was on vacation-- this was the one on call). His advice was basically your acknowledgement, Joplin, to 'try to tough it out' since my T4 and T3 are pretty good. I have bad days and good days and so I'm okay with the plan to see how I'm feeling. I have a lab slip waiting if I feel like I go into sustained hyper; they'll see where I'm at. 
Really, I tend to cycle very fast. I feel very low-- I went camping this past weekend and I was so miserably cold the whole time. My poor feet! Then I'll have a day of massive shedding, and then my heart rate will creep up and throat will feel constricted and then over the next couple of days, it backs off. I appreciate the feedback. I'm sticking with the baby dose of levoxyl for 5 weeks just to see. I felt bad off the meds and on the meds this summer and I did fine on the generic in the past. I'll check out the other forums too...


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