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Old 09-04-2005, 07:43 PM   #1
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High thyroid peroxidase level...not sure what to do?

Iíve never posted anything on a board before, but I could really use some advice. I need to give some background info first, so apologies (in advance) for the long post.

For approx. 20+ years Iíve experienced the following symptoms (off and on) in various degrees:

Palpitations
Tachycardia
Chest pain
Inability to tolerate heat AND cold
Inability to sweat
Panic attacks
Anxiety
Chronic low grade depression
Dizziness
Feeling cold in the evening but hot during the night
Cold nose
Stomach aches
Teeth chattering, body shakesÖto name a few.

Initially, I was diagnosed with Mitral Valve Prolapse (MVP). After doing some research on my own, I felt I had MVP SYNDROME, which has more to do with an imbalance in the autonomic nervous system (dysautonomia). I have never really had a doctor actually diagnose that, but my current cardiologist, while she doesnít feel I have MVP, does acknowledge that my nervous system seems to be out of whack (along with the fact, the while my valve doesnít prolapse in the clinical sense, it does still flatten some). I know Iíve had thyroid tests done over the years as I thought I might be hyperthyroid, but was always told it was Ďnormal.í

A couple years ago and 6 months after the birth of my 4th child (a pregnancy in which I developed preeclampsia and never had with my other pregnancies), I noticed my face seemed puffy. I asked to have my TSH tested and it came back at 10.8. The endocrinologist I was referred to said I had postpartum thyroiditis. She wasnít going to treat me at all since itís supposed to normally resolve at about a year postpartum, but because my blood pressure was slightly elevated, she prescribed .25mcg of Synthroid/day. By 6 weeks the TSH was at 2.8. I think it got even a bit lower (into the 1ís) at some point. I noticed while taking the synthroid that my heart symptoms seemed to be better. For example, normally my heart kind of races (about 120 bpm) when Iím in the shower, but it had quit happening. And I just generally felt better. Six months later though (and 2 weeks after I had a miscarriage), I woke up having one on my Ďepisodesí (teeth chattering, really bad body shakes, panicky feeling, and a stomach ache). I thought that maybe I had gone back to being Ďnormalí and was getting too much of the thyroid medicine. My endo dr. was out of town and the internal medicine doctor I saw did a TSH which came back at 4.8 (surprising to me, I would have thought it would have been really low), and took me off the Synthroid. Within about 3 months, I was back to my usual Ďout of whackí self. TSH tests since then have been in the 3.2, 3.8, 3.7 range (from Sept04 to Jan05).

Earlier this year, my cardio dr. referred me to another dr. that specializes in alternative treatment of the thyroid (symptom-based vs. blood tests). It took me four months to get into to see her. About a month before I got in to see her, I developed hives (off and on for about 2 weeks). This doctor said she felt that all of my symptoms were due to being hypothyroid and started me on .25mcg of Levoxyl/day (she didnít do any blood work). I started to feel weird side effects by the 2nd day and then started having hot flashes (that lasted a couple of hours). I stopped the medicine after Day 5. The doctor felt that I was absorbing too much of the medicine so she told me to Ĺ the dose and take with food. After 2 days, I started on the medicine again, but on Day 3 had another bad episode. I canít really explain it all, but it kind of felt like my body was trying to sweat (which I donít do) and just not feeling good. So I stopped the medicine again. Now, sheís ordered .01mcg tablets from a compounding pharmacy for me to try. Iím supposed to start there and increase every two weeks until we get the right dose. I havenít started this yet.

After I saw her and before I started any medicine, I also saw an allergist (who also confirmed that thyroid problems can cause hives). She, in comparison to the other dr., did a ton of blood work, testing everything. The TSH came back at 2.9, the FT3 and T4 were also in the normal range, along with all of the other tests except the thyroid antibody panel. The lab goofed up and didnít do it, so I had to go back and do it this past week (7-8 days after I had stopped taking any Levoxyl). This time though, my thyroid peroxidase came back at 125 (they said it should be under 35). They want me to see an endo dr. again.

So, all that... to get to these questions:

1) Could the Levoxyl have skewed or affected the thyroid antibody test in any way?
2) If no, and the antibody test is suggesting Hashimotoís, for example, why didnít I feel better taking the Levoxyl?
3) Does anyone know anything about compounding pharmacies? Are they safe? And if they are making this medicine, is it really the same as Levoxyl?
4) Did anyone have trouble finding the right medicine or dose? I didnít have any issues with Synthroid last year.
5) Iím not sure if I should try to go see an endo dr. (now that I actually have an abnormal lab result) to see what it means or what else might be going on, or should I just continue to see this other alternative medicine doctor thatís currently trying to treat me?

Iím not a big medicine person and it seems like this shouldnít be so hard? Is it the thyroid, the MVP syndrome, both??

I appreciate any thoughts you might have.

 
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Old 09-05-2005, 04:47 AM   #2
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Re: High thyroid peroxidase level...not sure what to do?

I have Hashi's and similar to you, I've had tons of trouble taking meds. Whenever I tried starting the meds my heart would beat like crazy and I was getting hot flashes and then freezing. Now, I've just given up on the meds all together. Hashi's is VERY hard to regulate with meds cause its ever-changing. When those antibodies are raging you feel yucky and then it calms down and you feel better. I've been messed up for 2.5 years now with no end in sight. I know some people get relief from meds but for me, my numbers were too close to normal to take meds I guess. My antibodies however were greater than 1200 and greater than 2500, so they were really raging.

My personal opinion with Hashi's is the only way to get fixed is to remove the gland completely and take hormones you can control OR wait 10 years until your Thyroid turns cancerous or dies on its own, which will usually be the ultimate plight of the gland - maybe not the cancer, but it will most likely die off eventually.

One thing that has helped me find some "peace" is a little test called TBG, which is Thyroid Binding Globulin. TBG is the main protein made by your liver that transports thyroid hormone through your system. My TBG score was abnormally high, which is a really odd case becasue that number does not fluctuate much. My Endo attributed the high TBG with hereditary, saying that its just the way it is in some people. What that means for me, however is that I have a tendency to transport a lot of hormone, even when its low. If I take additional hormone like Synthroid, my body seems to use every last ounce of it and turns me hyper. Hashi's is a real pain.

 
Old 09-05-2005, 06:55 AM   #3
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keke18 HB User
Re: High thyroid peroxidase level...not sure what to do?

It sounds like I probably should go see an endo dr. (possibly for the other test you mention). And it sounds like I don't have too much to look forward to. I was up most of the night last night.....

You say you feel bad when the antibodies are raging. Do you have the hyper or hypo symptoms or both?

 
Old 09-05-2005, 09:50 AM   #4
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Re: High thyroid peroxidase level...not sure what to do?

I get both in cycles. Sometime my hearts pounding at 112 bpm while resting and other times I get slow, bloated and fat and can barely keep my eyes open. Its up and down for me all the time. Its like a big sine wave for me. I go normal, hypo, normal, hyper, normal back to hypo and it seems to repeat every few weeks, sometimes days. Every once in a while I get a really nice break of like 17 days of perfect normalness and then it starts over again, typically with a little pain and swelling in my thyroid...for me that is the sign I am at the beginning of a new cycle. I think I am at a point now that enough of my gland has been killed by now because thankfully, I do not get nearly as hyper as I did about 1.5 years ago. At that time I was getting panic attacks daily....even had a trip to the ER last August with 179/120 blood pressure and 135 BPM pulse....it was horrible....lasted like 7 days...was one of the scariest episodes of my life. I'll take hypo over hyper any day but they both totally stink.

 
Old 09-05-2005, 09:51 AM   #5
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Re: High thyroid peroxidase level...not sure what to do?

Edited to try to remove the multiple posts.

Last edited by nastyhashi; 09-06-2005 at 04:58 AM.

 
Old 09-05-2005, 09:51 AM   #6
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Re: High thyroid peroxidase level...not sure what to do?

Edited to try to remove the multiple posts.

Last edited by nastyhashi; 09-06-2005 at 04:58 AM.

 
Old 09-05-2005, 09:51 AM   #7
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Re: High thyroid peroxidase level...not sure what to do?

Edited to try to remove the multiple posts.

Last edited by nastyhashi; 09-06-2005 at 04:57 AM.

 
Old 09-05-2005, 09:51 AM   #8
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Re: High thyroid peroxidase level...not sure what to do?

Edited to try to remove the multiple posts.

Last edited by nastyhashi; 09-06-2005 at 04:57 AM.

 
Old 09-05-2005, 09:51 AM   #9
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Re: High thyroid peroxidase level...not sure what to do?

Edited to try to remove the multiple posts.

Last edited by nastyhashi; 09-06-2005 at 04:57 AM.

 
Old 09-05-2005, 06:32 PM   #10
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Re: High thyroid peroxidase level...not sure what to do?

Keke,
I too had been dealing with hashis for about a year and a half. The thyroid meds will do NOTHING for high antibodies. You can try taking 200mgs of selenium for those, it has been shown to help destroy them.

Just like nasty said, it is pretty much impossible to regulate hashi's. My labs were always perfect except for the antibodies. I ended up having mine out about a month ago and have never felt better. Do you have nodules? Have you had anyone ever look at your thryoid?

Meds fix nothing with hashi's because your thyroid is dying and sputtering into cycles.

Best of luck,
Karen

 
Old 09-05-2005, 07:11 PM   #11
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Meep HB UserMeep HB UserMeep HB User
Re: High thyroid peroxidase level...not sure what to do?

Quote:
1) Could the Levoxyl have skewed or affected the thyroid antibody test in any way?
2) If no, and the antibody test is suggesting Hashimotoís, for example, why didnít I feel better taking the Levoxyl?
3) Does anyone know anything about compounding pharmacies? Are they safe? And if they are making this medicine, is it really the same as Levoxyl?
4) Did anyone have trouble finding the right medicine or dose? I didnít have any issues with Synthroid last year.
5) Iím not sure if I should try to go see an endo dr. (now that I actually have an abnormal lab result) to see what it means or what else might be going on, or should I just continue to see this other alternative medicine doctor thatís currently trying to treat me
1) Not likely. If anything, Levoxyl MIGHT have lowered it some by shrinking the amount of thyroid tissue there is to attack, but, again, this is not likely.

2) Antibodies alone can be responsible for symptoms, even in the presence of "normal" (normal is a dirty word) lab results.

3) Compounding pharmacies are safe and are the only option when precise custom dosing is needed or you need hypoallergenic thyroxine pills in a dose other than 50mcg

4) It took me well over 2 years to get my dose just right, but it was worth the wait and effort involved--patience pays off!

5) Most people actually have better luck with an alternative practitioner, BUT your mileage may vary due to driving style and road conditions. You can't just take thyroid meds and expect to suddenly be all better, so regardless of who you choose to see, give them a chance to work their magic, because it DOES take time and is not an overnight process.
__________________
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I am not a doctor, nor have I ever played one on TV...

Last edited by Meep; 09-05-2005 at 07:14 PM.

 
Old 09-06-2005, 09:46 AM   #12
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keke18 HB User
Re: High thyroid peroxidase level...not sure what to do?

Thanks Meep, Kant, and Nashtyhashi!

I guess I did get excited once everything was pointing to the thryoid and I was hoping it would just be an easy matter of taking some meds (which I don't like to do anyway). I'm not sure about the scope of the alternative dr. She's actually a GYN dr., but she does seem very willing to help. When I went to see her she didn't know about the antibodies, so not sure if she'd do anything different. So, I might go see the endo dr. just to get a 2nd opinion. Then I can always go with what I feel more comfortable with. I've had bad experiences with Drs. before in the past and KNOW that you have to be your own advocate.

Thanks again.

 
Old 10-05-2005, 11:59 PM   #13
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KCThy HB User
Re: High thyroid peroxidase level...not sure what to do?

Nasti,
just curious, have you been to see a surgeon?

 
Old 10-06-2005, 07:05 AM   #14
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merrillin HB User
Re: High thyroid peroxidase level...not sure what to do?

Keke,
How are you doing in your effort to find out what to do? I have read and heard of so many people with hashi's that cannot take meds and I think ( my humble opinion) it is because we swing into hyper and hypo. I, myself had just about all hyper symptoms with hashi's, just one or two hypo symptoms so I didn't take meds til right before my thyroidectomy. I don't know, if it is like my case or nasty's sometimes there is nothing you can do for it, it is so bad it just has to come out. The thyroid meds do nothing for hashi's and dr's who believe they do are so ignorant of the condition.


Nasty...............what are you doing these days about your mess?

Karen

 
Old 10-06-2005, 09:11 AM   #15
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keke18 HB User
Re: High thyroid peroxidase level...not sure what to do?

Hi all, thanks for the responses. My latest test results (done by the endo doc) are in a different post. Essentially they were the same as before....thyroid antibodies and a TSH hovering around 3. I haven't ever been to see a surgeon. This latest dr. thinks I might be in the early stages of Hashi's and wants me to start Synthroid (25 mcg). She said she didn't feel any nodules, although I remember about 10 years ago a doctor telling me he felt a small one and told me to watch for growth. Maybe it went away.

I did feel a lot better before on Synthroid when I had the postpartum hypothyroiditis, but felt really bad when I just tried the Levoxyl recently. I was definitely having a lot of hypo symptoms after my youngest was born - my face was even puffy. Now, I would say I alternate between the hyper and hypo (with the hypo symptoms definitely being preferable and not having the hyper symptoms as often).

But, what I really donítí understand is why if someone has Hashiís the symptoms fluctuate?

Iím afraid to take the SynthroidÖ.

 
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