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Hi Everyone, long read looking for insight

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Old 10-05-2017, 11:02 AM   #1
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ThinkPositive81 HB User
Hi Everyone, long read looking for insight

Hi everyone, so I've been on a hellish 10 year journey.

11 years ago I had my first high blood pressure reading, which scared me significantly since I was only 24.

Then I turned 25 and I had what the doctor thought was a really bad anxiety attack. I had come from work and was extremely tired that day laid down and fell into a deep sleep. That summer i had issues sleeping because I didn't have an air conditioner and that day I just had one installed. Suddenly I was awaken by my mother and when I jumped up my heart was racing faster than I'd ever experienced in my life and it wasn't slowing down so I had my father call for the first time in my life for an ambulance. They ran some tests and my bp was high again. Immediately they started me on a high blood pressure med. From there I had difficulty even walking up the stairs and was beginning to feel extremely tired to the point where I couldn't really do much. Then came the depression which resulted in a 10 mg dosage of Paxil. It helped slightly but my BP readings were still all over the place. Further testing was done and my ANA came back positive and they were suspecting Lupus ( two years earlier I had a terrible case of mono).

Anyhow my ANA would eventually return to normal levels but my symptoms of terrible anxiety, light sensitivity, extreme fatigue, depression progressed. I literally went from someone that was bench pressing 375 pounds to someone that could barely go for a short walk. Eventually there were days that I was somewhat functional but they were sporadic and had really damaged my confidence as I didn't know what to expect from my own body anymore. I went for a short walk in the sun once and my bp shot up to 189 over 118 and I was shaking while still on the bp med and the anti d. Eventually I saw a homeopathic doctor who was also a cardiologist who told me he saw early signs of thyroid disease, low t and vitamin d deficiency even though they were all in the lower end of normal. My ANA reading once again was positive at a 1:1250 and I tested positive for epstein barr. As far as lyme went I tested negative overall but he did note that I tested positive for one lyme specific band.

Moving forward I tried the natural approach coupled with my medication for over year and still things progressively went down hill. I started becoming shaky and losing weight and my doctors were talking to me like I was crazy. One doctor looked at my testosterone levels at the time and said they are in the normal range (was about 275) and threw my tests on the floor (for which his assistant had the common sense to say they were low for my age). Then my primary care physician says we just tested your thyroid levels they are normal I'm not re-testing them again and I am not sending you to an endocrinologist, he did however refer me to a neurologist.

Neurologist sees me, sees the tremor and re-tests my thyroid. Surprise surprise my thyroid apparently went from "completely normal" (which the tests did show) to completely HYPER thyroid and very bad at that. From there I'm referred to an endocrinologist FINALLY and they do all the retests. Apparently I had thyroiditis . It went from hyper for a few months to HYPO for a few months and then normal then back to HYPO , then Normal then back to HYPO and then normal permanently. Still my symptoms progressed. My primary care physician then does a complete 360 and tells me to cease taking the paxil 10 mg. A rheumatologist finally diagnosed me as having Lupus although I didn't test positive on the anti-dsdna i just tested equivocal however they said that coupled with the ANA and the symptoms confirmed it. I went to a second opinion that said they didn't know if I had lupus but that I definitely had some sort of mixed connective tissue disease.

Anyhow years have passed again and my testosterone which was always teetering on the lower side of normal is now out of range low across all ages. No signs of osteoporosis, no blockages, nothing else just low T and low vitamin D levels. My BP has also been all over the place as has my anxiety and I have difficulty standing in one place for even short periods as I feel unstable. No muscle disease apparently but I do have back issues like a bulging disc and I frequently feel the need to stretch my legs. I should also note that my sleep has increasingly become worse and that I was diagnosed with a mild to moderate sleep apnea caused by something with my throat. In addition I have 95% blockage in my nose due to a deviated septum and some sort of bone spur which apparently i could have had going back to the time I was 11. Also, I haven't been able to exercise in over 8 years as even after a small weight lifting session I would be so drained I'd be scared to walk back to my car from the lightheadedness.

At this point as you can expect I've become worn down from the symptoms and being around medical personal that are consistently puzzled and that are just ready to treat the symptoms and be very explicative as to what they think is going on in the big picture instead of trying to get me out of an office within 15 minutes.

Is there a possibility that a lot of these issues or all could be caused to many decades of poor sleep? When I think back now I don't recall having a good night sleep in over a decade and even then I would still feel semi unrefreshed.

BTW if you read all of that I greatly appreciate it

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Old 10-06-2017, 07:02 AM   #2
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Re: Hi Everyone, long read looking for insight

Are you being treated for the low D? Prescription strength D is the only way to get your levels up to where they should be and every symptom you have could be attributed to low D levels. It takes months to get those levels up even with prescription strength supplements.

Please talk to whomever you trust about this. A simple blood test every month can confirm if you are getting enough D and quite a few of your symptoms should disappear when you start elevating those levels.

I have MS- a cousin to Lupus. Many of my symptoms are similar to yours; however there is no blood test for MS, it is diagnosed by MRI and symptoms.

You dont sound like you have MS, but you do sound like you need to get those D levels straightened out.
RRMS- dx 05

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