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Checkin In With My Fellow Potsy People :)


KLK1305
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Hi guys! I did not realize that it had been since January that I have posted anything! Gosh time just flys by doesn't it? I figured it would be good to do an update since last time I posted I had just returned home from my first appointment @ the University of Toledo.

My love of Toledo, Bev and Dr. Grubb are still as much as they were that first day (if not more now!) Since January I have been up there 2 more times, with my next appointment being tomorrow. They have been playing with my meds over these last few months. When I went up there I was only taking Zoloft & Florinef. Well at this very moment I am taking Welbutrin, Propanolol, Ritalin, & Provigil for short periods of time. Also add in there Axert, Percocet & few others I can't think of off the top of my head that I take when the symptoms appear. I am no longer bed ridden at this time (YAY) which is great. It's definitely nice to return to being able to get up and get around more and more on my own instead of relying each and everyday on my family. I am still having a few episodes a week but that is far better than having multiple ones a day. I of course still have frustrations & challenges everyday but I am ok with that :)I atleast can get out of the house, spend some time with friends outside of my house & feel somewhat normal.

I have a question and hope maybe someone has experienced some of the same. I have been having bloodwork constantly since February. I have always had a prominent goiter but since all the potsy/ncs/cfs has been flaring up it has been going up and down in size and at times has been affecting my ability to swallow. My first round of blood work showed that I was hyperthyroidism. But what makes no sense is all of my symptoms are that of hypo (weight gain, puffy face, fatigue, constipation, etc) My last round of work, my doctor decided to run anything and everything he can. Well my cholesterol is off the charts!!! There were so many LDL & HDL particle things on the test that I am so confused. All i know is I am in great excess of normal in all of them. After doing some research I have seen that severe cases of hypothyroidism (Hashimoto's) have extremely high cholesterol. Has anyone else had any thyroid/cholesterol issues? My diet is good. I try to exercise when I have the energy. It just doesn't make sense to me. Any comments, ideas are welcome & I thank you in advance :) I just have been trying to research and I have completely freaked myself out with trying to take cholesterol meds to lower it because I have found that people with NCS pass out more due to the veins dilating even more (which I definitely do not need)

I wish the best to all of you & hope that you are having more good than bad days. And if you are having nothing but bad days know that you are not alone. Just stay strong & keep your head up <3

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I have been on Armour thyroid for one year now. My cholesterol was high then, and had been creeping up for a few years. It will be interesting to see if it has gone down any. I was dumbfounded when I read the connection between hypothyroidism and cholesterol. I am happy you are feeling better!

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I have Hashimoto's. I was the opposite of you when I was diagnosed...my tests showed hypothyroidism, but I was losing weight, + had tachycardia and other symptoms (that turned out to be POTS-related probably). I have never had cholesterol problems, but yes there is a connection between hypothyroidism and high cholesterol--that can be reversed with thyroid treatment. I started to feel much better once I started on synthroid and my thyroid levels normalized. I have since that time found that if my TSH goes up, I tend to also get POTS-y.

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Krissy,

When I was diagnosed with Hashimoto's, I had a "normal" TSH, FT3, and FT4, but positive TPO (hypothyroidism) antibodies as well as TG (hyperthyroidism)antibodies, meaning that my previous periods of hyper symptoms alternating with hypo symptoms, were likely due to a sputtering thyroid, which can release excess thyroid hormone as it becomes more hypothyroid. Have you had your antibodies tested yet? If not, you should consider requesting the antibodies, which points to autoimmune thyroid disease. And yes, my cholesterol was high when first diagnosed with Hashi's and have now fallen into range with thyroid replacement and climbs again when my thyroid levels rise. I also get more ANS symptoms with higher TSH. I feel better with a TSH of 1.0 or lower.

Best wishes, Lyn

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I find I feel best with a TSH of 2 or a little lower. When I have gone to 1 I feel POTS-y and over 2.5 I don't feel quite right either. I think TSH of 2 is generally the goal for someone with thyroid disease even though there is a range of "normal" and each person is likely to have a different experience within this range.

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Thanks guys for all the responses :) I read them all on my way up to Toledo yesterday & was happy to find out this was more common than I thought. When I showed Dr. Grubb my last few blood work results he told me to not worry about it & that I just need to get in touch with an endocrinologist here at home to treat the hypothyroid (even though each test differs- one high, one normal, and two low). Said that more than likely treating just the thyroid will lower the cholesterol based on what he has seen with other patients. I am very happy to hear that cholesterol meds probably aren't going to be needed.

Sallysblooms- I am not aware of them checking my hormone levels. I will have to look into that.

Thanks songcanary! I'm glad to know I'm not the only one who was dumbfounded lol. And isn't Armour the one that is made up from animal??

MomtoGuliana I think that just shows that none of us have the typical symptoms of anything haha Like we don't need anything else more complicated.

Doozlygirl I am on the low end of the "normal range" for my TSH & T3. But my t4 is on the high end (atleast on this last round of bloodwork) But my antibodies are what have been flagged on every single one. This time my TPO is 49, with normal being 0-34. I have been high everytime except once and I believe it was in the teens. I was also flagged for low neutrophils and high lymphs (which always happens when my epstein barr is flared up) since it indicated something viral. And my b12 was really low so i need to start on shots they said.

Tammy do your doctors do anything beside just treat the thyroid, like cholesterol meds?

Alicia thats me. I am all over the place lol Story of my life with everything. I think that with a lot of us here there are things that we have but don't necessarily present the symptoms everyday.

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