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Old 07-17-2012, 09:04 PM   #1
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Join Date: Jul 2012
Location: Minnesota
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Mollie1972 HB User
Question Secondary Hypothryoidism? Advice.

Hello,

I am new to the thyroid test analysis, etc. However, I am not new to having hypothyroid symptoms with my TSH levels ALWAYS being in the normal range. I currently am having significant symptoms that I have been wracking my brain trying to figure out the cause.

Little bit of a history of me.

I have always been overweight to some degree. However, at certain periods of time, I ballooned up without really a cause (other than being told I am lazy and eat too much- which is not the case but I have weight gain). The more I would diet the more I would work out ... no weight loss or I would gain.

I do have a history of infertility. In grad school, I would have messed up long non-ovulatory cycles. I attributed this to stress. After grad school, my cycles normalized and I do believe I was ovulating. However, no pregnancies.

Weight loss was so impossible for me even with strict rigid dieting and exercise I chose to do gastric bypass. I did well lost 140 pounds. Normalized my weight and kept it there for 3 years. Tried to achieve pregnancy... again nothing. Went to an reproductive endocrinologist. All my labs came back normal except a red flag came up with my TSH which came back as 2.55 and their lab top is 2.50. All that resulted from this test was my having to go in and have a nurse feel my thyroid, which she said was fine. Nothing more on this topic. My husbands numbers came back low.. not crazy low ... but low enough to suggest IUI. So we embarked upon this journey. I responded well to hyperstimulation and we ended up doing 5 cycles with a pregnancy, I miscarried at 7 weeks. Took a one month break, and did another cycle. I was pregnant again and this time it took. I have a beautiful baby girl who is now 20 months old. Woo Hoo!

During my pregnancy, I was sicker than a dog pretty much the whole way through. However, my symptoms were not pregnancy stuff (nausea, heartburn, typical stuff) I didn't have really any of the normal stuff. Instead, I couldn't get out of bed (literally), massive brain fog (could not complete tasks), was crabby and irritable, having episodes of feeling jittery and weak. My OB/GYN ran tests everything was normal and I should drink caffeine. My TSH was 1.67 and my Free T4 was .9 in a range of .7 to 2.2.

Now prior to becoming pregnant, I was diagnosed with a severe vitamin deficiency. My numbers were like 10 or so. So, I was given Megadoses of Vit. D. and a 2 month plan. Once the two months was up my numbers would drop and they would give me another 2 month round of Vit D. Well, when I got pregnant, the Bypass folks passed me off to my OB/GYN and do whatever they suggest. My OB/GYN ran a vitamin D test which was 119 out of 78 to like 98 or so. He ran a different test than what I am used to which is why it didn't flag in my head that my vitamin d was off yet again. Again, he stated all is normal drink more caffeine. So unfortunately, my Vitamin D levels were significantly low while I was pregnant.

I also ended up with hydronephosis of the left kidney and was in the hospital for 4 days on antibiotics.

I am sorry this is becoming a long book.

After I had my daughter I went back for my yearly with the bypass people and they again stated my vit d levels were off. Back to the band aid technique. Long story short I went to an Endocrinoligist and he diagnosed me with Secondary and some tertiary hyperparathyroidism. I have been seeing him for the last year. We have been working on normalizing my vit d levels and my PTH. Which, now I can say, I have normal Vit.D, PTH, and calcium. I have to take 50,000 IU of Vitamin D daily and that seems to do the trick. I felt better, not perfect, but so much better that I thought that was my problem while pregnant. Now I am not so sure.

My husband and I started to do fertility treatments again this past January. Oh I should mention I lost all my baby weight. I put on roughly 10 pounds while being on the fertility meds but I got back to my weight with the extra 10 pounds. It was kind of strange how my weight just stopped there but I got the majority off. So, whatever.

Anyway, we did treatments for four months with no success. During this time, I gain about 30 pounds with no real change in anything diet-wise, exercise-wise, etc. I also noticed that I have significant swelling. My face, eyelids, lips, hands, legs, ankles, feet are all swelled up pretty much everyday. In the morning it starts in my face and works its way down by the end of the day. I have been dieting since the end of April and have successfully gained 5 pounds in this time frame. My weight has been all over the place. I have approximately one week when the water comes off ... but then back up again.

Now, I am pretty much just up with water weight. I have tried diuretics, no luck or minimal. I have talked with my GP and he just pushed me off to my endocrinologist without running any sort of testing. I talked with my endocrinoligist and told him my symptoms and he added TSH to my Vit D and PTH labs. My TSH was 1.23... NORMAL. So, I called my endo person again. His nurse informed me that they don't deal with edema and your thyroid was fine so... I don't think he can help you. I could have cried. I said he doesn't test hormones?? Well he does and we can run some hormone tests... but I will have to talk with him. I couldn't believe what I was hearing. WHO DO I TALK TO THEN???

She called back about 45 minutes later and my endo put in an order for free T4 and 24 hour urine cortisol. My free T4 came back at .9 .8 to 2.2. is reference range. NORMAL again, right???

This all leads me to this board. I am finding that the relationship between TSH and T4 is really the key. Am I correct in thinking I could potentially have secondary Hypothyroidism?? I could go into more symptoms but I have always felt that I fit the bill for hypothyroidism but my TSH always came back normal.

I will talk with my Endo this Friday and I am fearing that he will tell me all is well.

Does anyone have any advice??

Mollie

 
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