# New here, hashi auto immune wreck



## MyOwnWorstEnemy (Jan 17, 2013)

I posted in the intro section, but I thought I'd post here too!

Hello everyone,
My name is Lauren and I'm 27. I have had hashimotos and resulting hypothyroidism for 4 years now. I take 100 mcg synthroid daily. I am also newly diagnosed with UCTD and have started plaquenil for that (but that's a different story). At my first visit with my rheumatologist, he drew my TPO antibody with his blood work, I haven't had this drawn since I was diagnosed (at least not by the endocrinologist). When I was diagnosed, my family practioner started me on synthroid and rechecked my TPO 4 weeks later and the medication lowered my TSH and TPO. I was then referred to the endo who has followed me since.

On a side note, after my pregnancies, it took some tweaking to get my thyroid just right. i had my family practioner drawmy thyroid labs (just because it was a shorter drive to go to her, abnormal ones were sent to the endo) after I had my babies and things went haywire. She always checked my TPO. what always happened was I needed to be decreased after my pregnancies because I went hyperthyroid from the higher dose that was required while I was pregnant. When I was hyperthyroid, my TPO antibodies were awesome, in the normal range!- just something I noticed (the higher dosage decreased antibodies).

Fast forward to my visit with the rheumatologist, I'd had extreme fatigue since a flare I had over the summer. My TPO turned out to be greater than 1300! Off the charts yet my TSH was only 1.7. Now, I am already on a hefty dose for my body weight, I'm 105 pounds and my endocrinologist had told me he didn't think I would ever require higher doses. It is hard to judge whether the fatigue was from the UCTD or the hashimotos. I ended up having just a TSH rechecked 3 months later and it had gone up to 2.2, still tired. I called to ask my doc if I could try 112 mcg and recheck in 6 weeks and he wouldn't!

My question is, I know the guidelines about thyroid disease and that TSH is recommended to be less than 2. I think I recall reading somewhere that when TPO antibodies are high, TSH should be around 1 (it would make sense since my TPO was very low when I was hyperthyroid), does anybody know anything about this? Again, it's hard to tell which disease the fatigue is caused from, but come on, I don't think going up from 100 to 112 mcg will kill me! I'm just looking for any extra energy I can get. Should I look for another endo? Am I completely wrong in my thinking? Any thoughts/comments are appreciated!


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## smelliebellie (Oct 14, 2012)

hi,

welcome to the forum even though its unfortunate you're here.

have you had your free t3 and free t4s checked? that can give an insight to your symptoms. free t3 and free t4s should be midrange if not higher for most. i realized this after reading some time on these boards. theres no need in rechecking your antibodies. once you have them, you have them. what your antibodies are doesnt change the course of treatment nor does it dictate symptoms. someone with HIGH tpo's can be symptomless. and someone with within normal range can have a plethora of symptoms. even though i am on synthroid myself, i suggest you check out the STTM website or even read the book. its given me some insight into treating hashi's. i plan on makin the switch to natural dessicated thyroid hormone depending what my labs show next week. nice to see people on here around the same age as me!


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## Lovlkn (Dec 20, 2009)

Welcome Lauren,

I recommend you begin requesting your Free T-4 and Free T-3 to be run - goal is mid to upper 3/4 range.

Begin asking your doctor to dose your thyroid replacement medication on how you feel and your Free's.

Thyroid disorder symptoms are very common to the UCTD symptoms. Until you stabilize your Free's it will be hard to distinguish.


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## MyOwnWorstEnemy (Jan 17, 2013)

Hi! Thanks for the reply!
I have had T4 levels checked and they too were in the normal range. I don't think I've ever had T3 checked except for when I was diagnosed, and I'm not sure what my endo would think if I asked, I hate to step on his toes.

I was a little confused because mt family practitioner seemed to be on this train of thought that with thyroid replacement, my TPO would go down along with my TSH, which it did, but then she passed me off to the endo who has this mind set that TPO antibodies go up and down with a mind of their own independently from the TSH. I'm not sure what to think because yes, my TPO did go down when I started synthroid, and they've always been really low when my medication was too high. At the same time, my TSH is within normal range yet my antibodies are sky high right now.

I guess the main point is, do high TPO not make you feel like crap? Or is it always an issue with falling T3, because if that did turn out to be normal then there is no solution to my fatigue. This is very frustrating because I've had hashi for 4 years and have been treated with T4 only (synthroid) with great success, no complaints of fatigue along the way until now.

I know my whole picture may not be ONLY thyroid to blame, but I really don't see the harm in keeping my TSH closer to 1, at 2.2 now I'm really borderline with having to be bumped up anyway, that is, if my doctor goes by the appropriate literature. I'm irritated, no my problem may not just be thyroid, but a little boost would help.

In all honesty, I've already bumped myself up the past couple of days and I'm already starting to feel better (if it keeps up this confirms my thought that it could be my thyroid/high TPO). I was only going to take one of my older doses a couple of weeks to try to get my antibodies down and then continue hats supposed to be my current dose. I know, I know self medicating is bad, but I've got some wiggle room with my TSH, I can take the scolding from my Dr ( if I tell him). Don't mess with a girl that doesn't feel good! :tongue0015:


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## Andros (Aug 26, 2009)

MyOwnWorstEnemy said:


> Hi! Thanks for the reply!
> I have had T4 levels checked and they too were in the normal range. I don't think I've ever had T3 checked except for when I was diagnosed, and I'm not sure what my endo would think if I asked, I hate to step on his toes.
> 
> I was a little confused because mt family practitioner seemed to be on this train of thought that with thyroid replacement, my TPO would go down along with my TSH, which it did, but then she passed me off to the endo who has this mind set that TPO antibodies go up and down with a mind of their own independently from the TSH. I'm not sure what to think because yes, my TPO did go down when I started synthroid, and they've always been really low when my medication was too high. At the same time, my TSH is within normal range yet my antibodies are sky high right now.
> ...


Please read this about the FREE T3 and FREE T4.

Dr. Mercola (FREES)
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

Also, please have your Ferritin checked.

Ferritin http://www.thewayup.com/newsletters/081504.htm
(should be 50 to 100; the closer to 100, the better)

Most of us do feel best w/TSH @ 1.0 or less and the Free T3 at about 75% of the range provided by your lab.


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## MyOwnWorstEnemy (Jan 17, 2013)

Thanks for the link! I completely agree with all the info., and I'm happy to see some support that my TSH of 2.2 is too high! I'm a little ****ed. I'm not sure if I need to continue the higher dose I put myself on and keep feeling better or go back to my 100 mcg dose, let myself steadily fall then have my dr decide its time to bump me up! I'm disappointed, I hate to go behind my endo's back but I really want to call my family practitioner and ask if she will bump me up. (She might say that the thyroid business is not her thing). The only other solution I see is to find a new endo, but how do you make a first impression walking in with demands? I want to be increased, I want my t4 and t3 monitored not just my TSH etc. anybody have any suggestions on how to tiptoe around this without being a "difficult" patient, or do I just need to be brave and demanding?

I'm also upset because in a way I feel like my endo is not bumping me up because my rheumatologist drew the labs, almost like its some kind of beef between the two of them about overstepping their boundaries. It's a long story but in a nutshell, when I flared over the summer, I had inflammation in the side of my neck that they decided to call carotidynia (I'm not sure if all my doctors agree). Anyway, I had gone to my endocrinologist thinking it was thyroiditis or something (I'd never had painful thyroiditis, but I was trying not to think too far out of the box). My doctor worked up the thyroid including ultrasound. Bloodwork revealed normal thyroid labs but elevated CRP and monocytes and was referred to an ENT because he did not think that was thyroiditis. I was on high dose steroids for this and this earned me my UCTD label, but it was a really exhausting process because I wasn't even referred to rheumy for this anyway (I actually was referred because anti-ccp showed up in some bloodwork- specific for RA, but then ended up having this flare while I was waiting for my appointment! So I was referred initially regarding possible arthritis, but then it turned out that he started testing me for lupus.) anyway, before they looked into this "neck inflammation" I had, my rheumy was saying my ANA was probably positive because of the hashis (never had a positive one with this before) and my endocrinologist completely disagreed with the rheumatologist.

Wow, I hope I didn't confuse anyone but do you see what I mean? I almost feel like my endo WILL NOT budge in the matter because he says the fatigue is not a thyroid problem. However, in all this autoimmune craziness I've just gone through, it doesn't change the fact that my thyroid is beginning to act up again also!

Another issue I think is that I am at the top of my dosage weight-wise. Too much thyroid can cause osteoporosis, and I'm already a small girl. My point is, I will do everything I can to prevent it, take ca, vit.D etc., but I don't want to cut short my young life feeling crappy now just to prevent POSSIBLE complications later that may not happen.

Ok that was long. Thanks to anyone who has made it this far! So you all think I should push this issue of being increased? Should I seek a second opinion?


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## CA-Lynn (Apr 29, 2010)

I had to wonder, too, if the endo wasn't a mite ticked off at the rheumy for running the labs.

[Hey, good rheumy! S/he saw the possibility and figured he'd get to the bottom of it.]

You need an endo who will work WITH you....not make you jump through hoops. May be wise to find a new one?


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## Andros (Aug 26, 2009)

MyOwnWorstEnemy said:


> Thanks for the link! I completely agree with all the info., and I'm happy to see some support that my TSH of 2.2 is too high! I'm a little ****ed. I'm not sure if I need to continue the higher dose I put myself on and keep feeling better or go back to my 100 mcg dose, let myself steadily fall then have my dr decide its time to bump me up! I'm disappointed, I hate to go behind my endo's back but I really want to call my family practitioner and ask if she will bump me up. (She might say that the thyroid business is not her thing). The only other solution I see is to find a new endo, but how do you make a first impression walking in with demands? I want to be increased, I want my t4 and t3 monitored not just my TSH etc. anybody have any suggestions on how to tiptoe around this without being a "difficult" patient, or do I just need to be brave and demanding?
> 
> I'm also upset because in a way I feel like my endo is not bumping me up because my rheumatologist drew the labs, almost like its some kind of beef between the two of them about overstepping their boundaries. It's a long story but in a nutshell, when I flared over the summer, I had inflammation in the side of my neck that they decided to call carotidynia (I'm not sure if all my doctors agree). Anyway, I had gone to my endocrinologist thinking it was thyroiditis or something (I'd never had painful thyroiditis, but I was trying not to think too far out of the box). My doctor worked up the thyroid including ultrasound. Bloodwork revealed normal thyroid labs but elevated CRP and monocytes and was referred to an ENT because he did not think that was thyroiditis. I was on high dose steroids for this and this earned me my UCTD label, but it was a really exhausting process because I wasn't even referred to rheumy for this anyway (I actually was referred because anti-ccp showed up in some bloodwork- specific for RA, but then ended up having this flare while I was waiting for my appointment! So I was referred initially regarding possible arthritis, but then it turned out that he started testing me for lupus.) anyway, before they looked into this "neck inflammation" I had, my rheumy was saying my ANA was probably positive because of the hashis (never had a positive one with this before) and my endocrinologist completely disagreed with the rheumatologist.
> 
> ...


Make sure you read that link about the FREES. If you ask for T4 and T3, you won't get the FREES. You must ask for FREE T3 and FREE T4.

Also, you are paying them to do a job. If they are not doing the job to your satisfaction, it would behoove you to find a doctor that will.


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## MyOwnWorstEnemy (Jan 17, 2013)

Thanks! I think that's a unamious vote so far that my request that my doctor go up was not so crazy. I'm so frustrated though, I can't believe after all that I've been through over the summer I now have to deal with getting another opinion, and then I have to face doctor searching-will they work with me and listen to my requests and take into consideration how I feel in addition to labwork. I really had wanted to put doctor visits behind me, but I guess I'll start calling on Monday. I hate to do it, he's the one who caught this "random incident" that happened over the summer but I want my TSH less than 2 dadgumit! I'm thinking I will stay on the higher dose for now? Hopefully my supply won't run out before I get an appointment with another doctor.


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## nvsmom (Sep 30, 2012)

Have you considered taking T3 in addition to your T4? I have a cyber friend that calls it her "rocket fuel" because it gives her that extra boost so she feels well. I haven't tried it yet myself (I'm trying to get my FT4 up and my TSH below a 2 first) but I'd like to try it if I have still have symptoms when my labs are better (my doctor says I'm normal because my TSH is below a 6  ).

Best wishes in figuring it all out... don't you wish treatmenst didn't move at such a sloooow pace?


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## surge (Aug 15, 2012)

I think your instincts to call your regular doctor are right. Just say you're having trouble with the endo (which is not uncommon. If you read around here, you'll see plenty of that). Lots of people here use DO's or their primary care physician to follow their thyroid and only check in with an endo on occasion. It's worth visiting with your primary about this. If she says no, at least she'll know you need another endo referral.

I don't know of a direct relationship between TPO and TSH (one goes down, the other does too). but of course they are related, and the more stable your tsh is, the more likely it is your TPO will drop.


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## MyOwnWorstEnemy (Jan 17, 2013)

Thanks surge! So here's "the plan" I'm going to continue this 125 mcg dosage I prescribed myself:rolleyes: and call for a labs only visit in4-6 weeks with my primary. If its too high ill request to go down to 112.

nVsmom! Hello again! I think we ran into each other a few times on thelupussite! I haven't ever considered T3 because I've had good success with treatment on synthroid. I'm finally starting to feel normal again after that flare, just this lingering fatigue. If I can get my thyroid low enough to mask the lack of energy (whichever disease its caused from) then ill be happy. It's a fine balance, I know, because hyperthyroidism can cause fatigue too. I'm really, really hoping just a quick thyroid adjustment will do the trick. If it doesn't, I may consider T3, I just don't want to go through the whole mess of changing meds, drawing levels every few weeks etc. if I don't have to!


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## surge (Aug 15, 2012)

I'm down with that plan. I hope you feel better soon.


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## Andros (Aug 26, 2009)

MyOwnWorstEnemy said:


> I posted in the intro section, but I thought I'd post here too!
> 
> Hello everyone,
> My name is Lauren and I'm 27. I have had hashimotos and resulting hypothyroidism for 4 years now. I take 100 mcg synthroid daily. I am also newly diagnosed with UCTD and have started plaquenil for that (but that's a different story). At my first visit with my rheumatologist, he drew my TPO antibody with his blood work, I haven't had this drawn since I was diagnosed (at least not by the endocrinologist). When I was diagnosed, my family practioner started me on synthroid and rechecked my TPO 4 weeks later and the medication lowered my TSH and TPO. I was then referred to the endo who has followed me since.
> ...


You may wish to read this stuff. Not sure you have UCTD.

Myopathy from hypo
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1010480/

peripheral neuropathy
http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

http://www.suite101.com/content/thyroid-disease-and-neuropathy-symptoms-a140669

You could also have tendonitis from taking "any" Quinalone (the list is extensive), Metformin or Glucophage and any Statin.
The above depletes CoQ10 big time causing tendonitis and even tendon rupture.

Also, consider artificial sweeteners and other food additives such as MSG.

Pain is no fun. Hope you find some of this helpful.


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## MyOwnWorstEnemy (Jan 17, 2013)

Thanks for the wealth of info. Andros. It's actually a little (a lot) more complicated though. His diagnosis of UCTD is correct. I test postive for RA (anti-ccp positive)-however don't have symptoms of arthritis in my hands and feet yet. I also have a positive ANA, homogenous. Thankfully I do not have problems with myositis nor peripheral neuropathy. My related to CTD include arthralgia in my knees and hips (I've been on plaq. for this which has improved greatly-I don't even have to take ibuprofen everyday).It has also helped a lot with skin manifestations. It has almost been a whole year that I have not had hives! I also have dry eyes and recurring conjunctivitis but I take restasis for that which helps a lot. The flare I had over the summer actually turned out to be an arteritis issue which required high dose steroids to reduce my inflammatory markers. Thankfully all the kinks have been worked out, I just have to fix the thyroid now!

The strange part is, I developed hypothyroidism just a few months after I was hospitalized with pancreatitis (at the time, the cause was unknown, but considering my medical history and hte events that followed, I think the doctors all agree it was autoimmune). It makes me wonder if the UCTD-(possible lupus) caused my TPO antibodies to increase causing the hypothyroidism. You might find this interesting...

http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=2879&zoneid=76

http://rheumatology.oxfordjournals.org/content/40/3/353.full


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## Andros (Aug 26, 2009)

MyOwnWorstEnemy said:


> Thanks for the wealth of info. Andros. It's actually a little (a lot) more complicated though. His diagnosis of UCTD is correct. I test postive for RA (anti-ccp positive)-however don't have symptoms of arthritis in my hands and feet yet. I also have a positive ANA, homogenous. Thankfully I do not have problems with myositis nor peripheral neuropathy. My related to CTD include arthralgia in my knees and hips (I've been on plaq. for this which has improved greatly-I don't even have to take ibuprofen everyday).It has also helped a lot with skin manifestations. It has almost been a whole year that I have not had hives! I also have dry eyes and recurring conjunctivitis but I take restasis for that which helps a lot. The flare I had over the summer actually turned out to be an arteritis issue which required high dose steroids to reduce my inflammatory markers. Thankfully all the kinks have been worked out, I just have to fix the thyroid now!
> 
> The strange part is, I developed hypothyroidism just a few months after I was hospitalized with pancreatitis (at the time, the cause was unknown, but considering my medical history and hte events that followed, I think the doctors all agree it was autoimmune). It makes me wonder if the UCTD-(possible lupus) caused my TPO antibodies to increase causing the hypothyroidism. You might find this interesting...
> 
> ...


I found these links so interesting and informational that I have "bookmarked" and have read both of them.

Thank you soooooooooooooooooooooo much!!!

Boy, you have been through heck and back; haven't you? To your advantage, you are informed and clearly proactive. This is what we strive to get across to our posters!!!


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## MyOwnWorstEnemy (Jan 17, 2013)

Yes, I have been proactive. I also hope to be helpful to those who might possibly face what I'm going through one day. I have been checked for possible lupus for years, my strange symptoms started a couple of years even before my hypothyroidism began. I never had a positive ANA until now, yet things kept happening to me (things requiring treatment, often times steroids). I was finally referred to rheumatology when the anti-ccp antibodies showed up in my bloodwork (earlier this year, but had no positive ANA at the time).

I saw my rheumy a month and a half after I had my flare, and had a positive ANA with his bloodwork (first one ever, and i have had hashis for 4 years). He was quick to say he wasn't convinced it was positive b/c of my thyroid disease-this scared the crap out of me knowing the flare I just went through. I had to go back to my ENT who basically had to write in his note that the issue he treated me for was CTD related and not b/c of my thyroid. Yeah, scarey. I did eventually give me the UCTD label though this Novemeber.

Everyone here knows that with having one autoimmune disease you're at higher risk for having another. I really didn't believe this when I was first diagnosed (well, I believed it, but thought it would still be rare to develop another one). when you know there is something wrong, be proactive! Don't let them say it's just your thyroid! I don't want to scare people, I know i had an extreme experience. However, autoimmune diseases like to have friends. Keep a watchful eye on your health.


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