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    Being disabled is a full time job

    When I was six I was diagnosed with my first chronic illnesses: asthma. As I matured it grew worse. I was not one of those lucky children who "grew out" of their asthma. No I medicate and monitor daily just to be able to breathe. At 25 I was diagnosed with bipolar disorder, coupled with anxiety. Then it was hypothyroidism, PTSD, OCD. Then common variable immunodeficiency. High cholesterol despite a good diet. Anemia. Insomnia. The occasional migraine, though they're better than they used to be.

    Some days I'm grateful for modern medicine and the advances that have allowed me to have the treatments I do to keep me alive. Some days I despair. Why me? Why do I have to deal with all of this all the time? I'm disabled, I can only work part time. I can barely support myself. I spend more time at doctor's appointments than I do at work most weeks. I've found being disabled is a full time job in and of itself. I would give almost anything to live a "normal" life.

    So I guess I'm looking for words of support, commiseration , knowledge.

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    Community Voices

    What diets have helped for people with fibromyalgia?

    I'm just short of a fibromyalgia diagnosis as we are still ruling things out. I have IBS, high cholesterol and am looking into IC with a urologist soon. I have a history of trauma and am still struggling with C-PTSD but I'm working through self directed STAIR NT (Skills Training in Affect and Interpersonal Regulation with Narrative Therapy). I've done the low fodmap diet and I have lots of sensitivities, some worse than others. I saw a dietician and he said I should balance low fodmap, anti-inflammatory and heart healthy diets. That was all before I realised that some aspects of my diet are contributing to my urinary problems which, in turn, further disrupt my sleep. On top of that I'm just starting to read about the fructose intolerance, tryptophan, serotonin connection. I also recently read about the Hemoglobin A1C test and possible insulin resistance and I'm going to talk to my doctor about both of those things soon. I have recently started using compression stockings for my varicose veins in one leg and that's been helping somewhat with my lower leg fibro pain in both legs as well. All these things are swirling in my head and I know that exercise and stress reduction and sleep are very important too but I just can't help but think, how I am I supposed to eat? My apartment is a disgusting disaster, I try to manage to keep on top of my dishes and laundry and caring for my cat's but I can barely make myself regular meals. How am I supposed to explore and follow all these special diets? And I guess, more importantly, is it worth it? Not that I have much success avoiding sugar and salt etc with my stress eating, though when I do, it does help. Thank you in advance for any and all advice and sorry for the rant lol. Thank you to this group for existing for me to ask in the first place 💗

    10 people are talking about this
    Community Voices

    How do you make food when you're in too much pain to cook?

    Due to my current health crisis I'm unable to cook as much as I normally would. The soles of my feet throb in pain. So that's leaving me searching for pre packaged food. Other than most pre packaged foods being unhealthy I'm allergic to dairy and I'm gluten intolerant. Plus I have high cholesterol so I'm very careful about the saturated fat. Trying to find gluten free, dairy free, low saturated fat pre packaged food is quite the challenge. I've checked out Hungry Root but it is rather expensive. So any ideas of what I can do?

    #ChronicPain #Cooking #FoodAllergies #HighCholesterol #Anxiety

    8 people are talking about this
    Community Voices

    Feeling down and depresses

    I am feeling somewhat down and depressed plus anxious. I joined The Mighty a few days ago and I'm just now feeling more comfortable telling my story. In 2006 i was diagnosed with Leukocytoclastic vasculitis. I had purpura all over both legs and it was very painful. It took a few months but I recovered and was relatively healthy for several years. Then as soon as I hit 40 it was like my health fell off a cliff. I was extremely tired all the time, depressed, and had night sweats. My doctor repeatedly checked my hormone and thyroid levels but they kept coming back "normal". Then I went to an ENT to get my ears cleaned. During the exam he felt my throat and said my thyroid was enlarged. I had an ultrasound and my thyroid levels checked, again. Finally I was out of range and I started synthroid. I noticed over the next few months my symptoms got worse and my neck was getting bigger. I had another ultrasound and talked my doctor into increasing my dose. The ultrasound showed I had nodules on my thyroid so he sent me to a pathologist who I well known around me for only testing the thyroid. I had a fine needle biopsy which came back benign. However, he said he could tell by looking at my thyroid I had hashimotos and sent a note to my doctor to test my TPO. It came back way, way out of range at over 800. My doctor said I had hashimotos in the past. By this point though I had been doing my own research and new that wasn't correct. Plus I went to an endocrinologist who was concerned I not only had hashimotos but graves disease too given how large my thyroid was. The graves test came back inconclusive. Meanwhile, I was on a hormone rollercoaster plus I developed shingles. I wound up in the hospital a few times and was taken seriously once till shift change where the new doctor brushed me off and sent me home. My primary care doctor was not happy the hospital brushed me off because I had chest pain. I saw a cardiologist a few times, was taken off synthroid then back on because my thyroid levels were all over the place, then after about 6 months everything calmed down and I was stable. I ended up changing primary care doctors since I couldn't get the old doctor to believe I had hashimotos plus he wouldn't check my iron levels. The new doctor checked my iron at my first appointment and found my ferritin level was very low but never tried to figure out why. Fast forward a couple of years and I start having severe pelvic pain. After seeing 6 doctors in the span of 2 months I finally get diagnosed with adenomyosis and fibroids. Nothing was helping with the pain and I had a total hysterectomy only keeping my ovaries. I woke up from surgery and the pain I had been in daily for several months was gone. Then about 7 months later the thyroid pathologist told me my thyroid was getting so enlarged I should see a surgeon about getting it removed. The same week I severely sprained my ankle and lost my insurance. Two months later with new insurance and still dealing with the sprained ankle I went to a pain management specialist and he sent me the physical therapy. By this point it was December so the holidays interfered with starting therapy and my Achilles tendon quit working and I was on crutches. Meanwhile, I couldn't work because I worked in catering and had a heck of a time getting on disability. I ended up having to quit my 2nd job because I just couldn't walk and be on my feet as long as that job required. Over the next 6 months I faithfully went to therapy and doctor appointments. I wound up in a walking cast at one point, sprained my ankle again, and had the big toe on the same foot sprained after someone walked right into me and stepped very hard on my foot. This caused me to go on workers compensation because it happened at work. Meanwhile at the same time my landlord decided he didn't want to renew my lease so I had to fight him in court and look for a new apartment. Oh and my insurance decided I had enough physical therapy so they cut me off. This brings us to January 2020. My whole family got sick in January with what we now know was covid, we didn't then. While I was still recovering we moved. I was able to return the physical therapy for a brief period till lockdown in March. I had a few virtual appointments then I was discharged about a month later. In September I went to a new endocrinologist and she looked at my records, ordered a new ultrasound. She confirmed my thyroid was way to large to even figure out what was thyroid tissue and what was nodules. She sent me to a surgeon who immediately scheduled me for surgery for a total thyroidectomy. I recovered from that, my anxiety spiraled way out of control and my husband took me to the emergency room one day. That got me into the counseling and with a psychiatrist right away and I'm on medication. With my anxiety getting under control of course something else had to start. In October I started having what I think are vasculitis flares. I tell my doctor who prescribed gabapentin and also started me on a statin due to high cholesterol because genetics. I am allergic to dairy, have gluten intolerance and overall already eat fairly healthy. So I started both new medications and immediately break out in hives over Thanksgiving. I stop both new medications and the hives don't go away. So after 2 rounds of prednisone they finally go away. The doctor wanted to wait a few months before trying anything new again. Meanwhile, the pain my legs gets worse but mostly tolerable. Then one day in February I'm doing normal housework and halfway through the day I am in so much pain I can't walk. I'm laid up in bed for a week. I make an appointment with a rheumatologist who I saw last week. He was really thorough, nice, and clearly explained his thoughts. He doesn't think it's the vasculitis flaring up and runs A LOT of tests, 12 vials of blood and a cup of urine. He briefly mentioned fibromyalgia. When I Google fibromyalgia I do check a lot of boxes for it. He said expected all the test results to come back negative but they didn't. I did what I know you're not suppose to do but I Googled the test results that came back out of range and the only things I can speculate is maybe I do have fibromyalgia, the vasculitis is flaring, and I may have a mild case of a hereditary blood disorder that is in my family, my dad had it and several cousins have it. It's spherocytosis. The only reason I speculate on the fibromyalgia is the soles on my feet really hurt and that does not go with vasculitis. I'm currently learning that I can't push myself or I over do it and wind up in a lot of pain. My feet constantly throb. I am starting to pace myself. I see the rheumatologist the first week of May to go over the test results. So that's my story, sorry it's long.

    #Anxiety #hashimotos #Hypothyroid #Adenomyosis #Hysterectomy #HighCholesterol #Undiagnosed #Fibromyalgia #LeukocytoclasticVasculitis #ChronicPain #MultipleDisabilities #Spherocytosis #ChronicPain

    3 people are talking about this
    Community Voices

    In health purgatory

    I am 42 yrs old. I was 17 since I had weird symptoms periods and no periods. Extreme cramping, mood swings and No answers. Heavily fluctuating weight and no pregnancy even though I tried I was married then. I went to doctors and many years til I was in my mid twenties. Then moved to Florida had no health care. Then after Obama care passed finally able to get in 2016 health care. Well started doing the exams and test I needed. Found I had a goiter, cold nodules and starting to put pressure on trachea. So then six months find I have hashimoto's thyroiditis. Can't sleep or breathe well. Then in another six months goiter tripled three times size had to have surgery well my original surgeon retires so after him see second surgeon. Then surgery finally got scheduled I was 38 yrs old at this point. Had surgery and been having complications treating thyroid levels right because first endocrinologist didn't treat it right. Developed Chronic fatigue syndrome plus burning sensation in different parts of body due to TSH. Then after that was following up with my female health come to find out my complaints since 17 came to a head at 38. I found out I had Poly Cystic ovarian syndrome plus Adenomyosis. I wasn't crazy or exaggerating. When doctors for years said they couldn't find what was wrong. Well my insulin resistance and type 2 diabetes diagnosis and high cholesterol were all explained due to my Pcos. So my uterus was at a whopping 11.2cm big. Three times a normal uterus size. I wasn't menstruating and was 40 could barely do day to day duties. Walking, moving my hip and insides felt like they were gonna fall out incredible pain. Being a massage therapist I had to cut back hours and a day because my body couldn't. Went to a reproductive endocrinologist instead of a gynecologist because my gynecologist said they would have to slice me in half and tale uterus out. And I didn't want three months off. So I saw reproductive end and he heard my sordid story of how many years I been suffering and felt bad. He then referred me to next doctor a surgeon and I had my partial hysterectomy. Now after surgery got checked out and sent on my way all normal. Then started exhibiting high estrogen dominance and high testosterone both free and total. And here we are. Now I am in perimenopause and a third endocrinologist and still getting answers slowly. Not very happy but trying to lose weight and live life. #Hypothyroidism #PCOS #Perimenopause #CFS #Insomnia #BrainFog

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    Community Voices

    Other diagnoses that wreak havoc on BP2 #Diabetes bipolar

    <p>Other diagnoses that wreak havoc on BP2 <a class="tm-topic-link mighty-topic" title="Diabetes" href="/topic/diabetes/" data-id="5b23ce7700553f33fe99129c" data-name="Diabetes" aria-label="hashtag Diabetes">#Diabetes</a>  <a href="https://themighty.com/topic/bipolar-disorder/?label=bipolar" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce6600553f33fe98e465" data-name="bipolar" title="bipolar" target="_blank">bipolar</a></p>
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    Community Voices

    New to the community.

    I was diagnosed with CRPS, VSS and FMD between 2 and 3 years ago, in the last year I've been diagnosed with high blood pressure, high cholesterol, NAFLD. I'm trying my best to hold it together put on a brave face sadly the cracks are showing, I applied for PIP but they don't seem to think I'm disabled enough to warrent PIP support even though I've got more Zebras than I care for.

    Thanks for reading.

    #ChronicDepression
    #ComplexRegionalPainSyndrome #VisualSnowSyndrome #functionalmemorydisorder
    #NAFLD
    #hypercholesterolemia
    #Hypertension

    Community Voices

    Talk About It Tuesday: Heart Health & Diabetes

    <p>Talk About It Tuesday: Heart Health & <a href="https://themighty.com/topic/diabetes/?label=Diabetes" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7700553f33fe99129c" data-name="Diabetes" title="Diabetes" target="_blank">Diabetes</a></p>
    4 people are talking about this
    Community Voices

    Please help # tired all the time

    I wake up tired. After about 2-3 hours I got back to bed. Sometimes I sleep all day. And when I wake up, I’m still tired. I’ve told my doctor and she said “ oh you must have chronic fatigue syndrome. With no advice on what to do. I have multiple health issues. I’m over weight, high blood pressure, high cholesterol, chronic back pain. I was proud of myself because I quit smoking and I don’t drink alcohol. Any ideas?

    6 people are talking about this
    Community Voices

    Another New Possible Diagnosis #bipolarspectrum

    Hi all! I just joined this community and this is only my second time posting on The Mighty ever. So I deal with #Anxiety , #ChronicPain , #Fibromyalgia , #MajorDepressiveDisorder and #IrritableBowelSyndromeIBS as well as a few standard health issues like #HighCholesterol etc.

    I met with my PCP this week for my wellness exam. Pretty standard. Lately, one of my biggest challenges has been sleep. I was born with #Insomnia literally. But I have flares that are pretty awful at times, and right now is one of those times. I've also recently started a new additional medication for my #Depression that has been helping SO much! However, my sleep is not improving. I try the "good" sleep drugs and they only seem to work for a few weeks before stranding me back the way I am.

    My PCP mentioned that he thinks I might be on the #bipolarspectrum . Honestly, I'm not completely shocked. I've always thought I had some of the characteristics, but also knew I didn't fit the mold for Bipolar 1 or 2. I just didn't know there was a spectrum.

    Anyways... not drag on here... He said he's game to try #lithium for 6 weeks if I want to try it, after taking some time to think. That frightened me though because I know how powerful a drug lithium is.

    I guess what I'm looking for is some advice on how to proceed? Should I gamble and take the lithium offer to test it out? Have you taken lithium and can you give me some honest feedback about it?

    Thanks for reading this far!

    4 people are talking about this