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4939681 tn?1361299299

Hashimoto related issues

I have been having "flare ups" (neck pain, horrible pain on either side of my thoracic spine, dry loose skin, joint pain, pain in the bottom of my feet, cold/heat intolerace and about a hundred other symptoms) for over a year now.  I get them twice a month (recent journal entries prove around ovulation and just before menstration).  My flare ups last for over a week, so that leaves me with approximately 5 days of feeling close to normal a month.  I was diagnosed with hyperthyroidism after my daughter was born 8 months ago and when my symptoms never went away once I was euthyroid, I was told that it was just postpartum thyroiditis and my symptoms must not be thyroid related.  Since then, I was diagnosed with Hashimoto's, but again, told that my thyroid levels were normal and I was in remission.  I can not take these flare ups anymore.  They are excruciating and my heartrate is so scary and all over the place during them (tachycardia one day, bradycardia the next).  I've read that even at normal thyroid levels a T3 supplement can help symptoms, but since I suffer from both hyperthyroid and hypothyroid symptoms, I'm scared to death to try it!  My calcium levels are always high (or high normal), but my PTH is "perfect" at 37.  What do I do to get some help?  I am so desperate!
Thanks for reading!
Carol
4 Responses
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Avatar universal
I don't really know where doctors get stuff they tell thyroid patients sometimes.  Like you being told that even though you had Hashimoto's Thyroiditis, your levels were okay and you were in remission.  Wrong.  With Hashi's the autoimmune system erroneously identifies the thyroid gland as "foreign" to the body and produces antibodies to attack until the gland is destroyed.  Along the way as natural thyroid hormone production is diminished, thyroid meds are required to offset the loss and prevent symptoms.

In addition, some Hashi's patients will have nodules form on their thyroid and these often leak thyroid hormone faster than normal, resulting in swings from hypo to hyper and back.  

Also, just because your thyroid hormone levels are within range does not mean that is adequate for you.  The ranges are far too broad, and patients are different as to what they need to feel good.  A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and free T4 as necessary to relieve symptoms, without being concerned about TSH levels.  Symptom relief should be all important, not just test results, and especially not TSH results.

If you haven't been tested for Free T3 and Free T4 (not the same as Total T3 and T4), then you should request those and if the doctor resists, then you should insist on it and don't take no for an answer.  Also, since hypo patients often find they are too low in the ranges for Vitamin D, B12 and ferritin, you should also request those.

If your current doctor is unwilling to treat you clinically as described above, then you are going to have to find a good thyroid doctor that will do so.
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Avatar universal
Also, meant to add that if you have continually tested as high in calcium, then know that the PTH test is frequently inconclusive.  I expect that you need to be tested further to see about the possibility of having parathyroid issues.  Again this points to the need for a different doctor.
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4939681 tn?1361299299
Thanks for your response!  The last time my free T3 was measured was when I was hyperthyroid 8 months ago.  Since then my doctors have always ordered free T4, TSH, and total T3.  It's weird!  The latest results are as follows T4 total = 7.4 (range 4.5-12.0), TSH 2.37 (range .40-4.50), PTH 37 (range 10-60), calcium 10.5 (range 8.6-10.2), ferritin 10 (range 10-154).  B 12, selenium, Vitamin D were all unremarkable.  

My greatest problem (though, I shouldn't complain) is that I live just outside DC and Baltimore, near the greatest hospitals in the world.  I actually was able to get into Hopkins (after a 3 month wait) and spoke to an endocrinologist there.  Though one 40 minute clinical meeting just isn't enough to cover how awful I feel or convince doctors that symptoms must be treated not based on blood results.  They are strictly "blood results are God" there.  I tried convincing them that my TPO being >1000 (now higher than the testing range) is key to why I feel so bad, but they were adamant that TPO levels meant nothing!!!!

So frustrated!!!!
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Avatar universal
Seems like you are well aware of the issues you have, so I'll only mention that ferritin needs to be well up in the range for best effects, so I think that you need to also get a full iron test panel, and address the low iron issue.  Likewise, Vitamin D and B12 need to be well up in their ranges as well.  

The best I have to offer is the name of a doctor in your area that was recommended by a fellow member as being a good thyroid doctor.  I am sending a Pm with a link.
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