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Chasing My Health And Always Behind

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I discovered I had Celiac approximately 2 years ago. Prior to discovering the source of my constant suffering I was diagnosed with b12 def(requiring b12 shots every 3 wks) and hypothyroidism caused by an autoimmune condition. Those two conditions combined with Celiac allowed me to finally start to feel some true health. It was miserable to be 23, recently married, and having to completely change my life patterns, but after 6 looooong months of strict label reading I finally started to feel young and healthy!

Unfortunately, my triumph was not long lived. I explained to my husband that my complicated history with my reproductive system was likely to cause great difficulty in pregnancy. I never had any answers for my constant abnormal cycles, but I knew in my heart conception was going to be unlikely. A year of no pregnancy and my doctor said that for my health I either had to return to taking birth control or persue a fertility doctor. I was then diagnosed with PolyCystic Ovarian Syndrome. Six months of seeing the fertility doctor, she tells me my thyroid levels are so high off the charts (even after months of no thyro meds) they aren't even showing on some of the blood tests.

So off to the endocrinologist. When I was 16 my thyroid went up and down for a year, but settled back to normal. I had never obtained an answer for that time in my life. Seeing the doc she diagnoses me with Graves Disease. A HYPERthyroidism disease! I was hypothyroid for over 2 years and never received an explanation why my body changed.

Two weeks ago I was given radioactive iodine to kill my thyroid. The first few days after that treatment I felt FINE, but the past 10-11 days I have been feeling awful. My immune system is practically useless so I thought maybe my pneumonia from Christmas was back, but the doc says no (even though I cough everyday). I have extreme fatigue and dizziness. My throat hurts horribly near where my throat comes together when I swallow. I am very moody and weak. My endocrinologist says there is no way I am hypothyroid yet.

I just don't know what to do... I have been feeling down because my health is a constant battle. Every doctor looks at me like I'm melodrammatic, but I'm actually quite tolerant to the deluge of symptoms my body can throw my way. My primary doctor has stopped treating me with any of his ideas and only treats me with what I ask him to do. I know that perhaps I am a bit pushy on doctors because I research everything they do to me, but my journey (like many) to a Celiac diagnoses was like a bad Lifetime movie. My only friend with celiac keeps telling me its my adrenal glands, but I can't get my doctor to believe how desperate I feel- how on earth will I convince him to test my adrenals!!! I honestly feel as if my light is going out...

Please help!!!

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Hi Jocelyn,

Some questions before I can help you.

Are you truly gluten free? No gluten in your hand soap, hair/beauty products, living in a gluten free household? Where do you work? Have you checked the soap there, are you near a kitchen or bakery? Do you go to church? Checked the wafers? All of your symptoms tell me you may be getting gluten in somewhere.

How abut dairy? Have you done any sort of elimination diet for other food sensitivities?

What does your typical diet look like in a week?

And finally :hugs: This is a terrible thing to go through. If I were you I would look at going to a functional medicine Doctor. Mainstream Docs are useless in the area of true health. If they can't push a pill on you or do a surgery they throw their hands up, or worse actually do physical harm. :blink:

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I've been where you were & where you are now with your thyroid or now lack of! I'm both hyper & hypo, Grave'sDisease along with a thyroid eye problem besides Grave's...I take alot of synthroid137 three times a week & 150 the rest of week. And now my insurance will not pay for it so I have to go to generic...of course they only state 50 is gluten-free so I was or could never be sure if I was getting gluten. My number are under five so I must be okay with it. But I'm very sensitive to most things on this planet so I'm not sure how I'll do on generic which starts in a day....

My hair is very thin, I'm tired all the time, no energy,freezing most of the time,A-fib due to this thyroid bull too... can't lose weight, hungry constantly.....I've talked til I'm tired of telling docs I need something else. I was perfect when I was on cytomel but since I have A-Fib docs will not let me have it any more.. Heart doc says the thyroid condition is causing the A-Fib...A non-win situation...for me..

I wish I could offer some help or assurance but I don't have any except keep fighting the docs! I truly feel your anguish....I hope you find some relief...

blessings

mamaw

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Ok, here's the truth. I am not 100% gluten free. I EAT 100% gluten free and am very careful at home with any and all CC. However, I have an issue with eating out. Rewarding myself is the easiest way to feel, well, rewarded... and nothing does the trick like a coffee or french fries. I've cut out other bad things and these two are too hard to give up. I know that french fries (anything but the expensive all natural gluten-free ones) are bad in general and shouldn't be eaten especially when purchased at a fast food restaurant... SO yes I take risks. My lotions do not have gluten and my toothpaste is safe. I checked my dishsoap, but not my hand soap!! What was I thinking?! OK so that is something to look into. I work at an elementary school where there is constantly gluten, but nothing near me and nothing being baked. My husband eats gluten, but very rarely is it prepared at the house. You're completely right that I sound glutened, but my main and numero uno symptom is the horrible "shoot me now" pain and the frequent long trips to the bathroom and I have had almost none of that. I guess my body changes and I'm either over-sensitive right now or my symptoms are changing. I pray and hope and BEG that it's not dairy. I did that off and on before I was gluten-free and I just love my dairy!!

My typical diet is rice cereal for breakfast (eggs used to be my staple breakfast, but oddly since the radiation I have not been interested in eggs/steak/heavy cheses... to the point of nausea if I smell them? and no, not pregnant), salad with chicken for lunch or maybe a sandwich (with gluten-free lunchmeat and bread). Dinner varies... sometimes I will make chicken breast, green beans, and gluten-free noodles. Sometimes it's chili or hamburgers. I love broccoli and potatoes and onions so there is a lot of those with chicken in different variations. I eat some form of sweet pretty much everyday whether it's a sugared coffee drink or a handful of M&Ms or a dish of ice cream- sometimes I will have chips and salsa instead.

So oh my gosh Mamaw the thyroid struggles do not give me much hope. I am still praying that in a few weeks my levels will start to drop to hypo and I can start back on meds. I would really love to be pregnant in a year, but I feel that my body isn't done throwing me curveballs... and unfortunately I am usually right about what's coming with my health.

Thank you to both of you for the support and sharing. I really greatly appreciate it. Keep the hope alive and please send me any ANY suggestions you may have!!! I am surrounded by people who love me, but don't understand...

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If you are eating out frequently then you are probably getting hit. It may not be enough to set off problems in your intestine but it has been enough to set off the muscle pain and thyroid issues. Celiac is one manifestation of Gluten Intolerance. Hypo-thyroid, Muscle aches, Migraines, Depression etc...are others.

What hand soap do you use? Also is your husband brushing his teeth before kissing you? Washing his hands after eating his gluten?

It doesn't take much exposure to this poison to keep us sick that is for sure.

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