Afraid will not be taken seriously

Posted by apriljeff @apriljeff, Feb 25 2:41pm

I have been having an array of symptoms for the last 5 years. Most my lab works were normal except exterem vitamin D deficiency. On a whim I did a full panel testing for celiac and autoimmune disease due to being a carries of HLADQ 2.5. all results were normal exacted my Ana Was 1:160 homogeneous and high cerianine level (3rd year in a row). I don't know how I can discuss this with doctor and taken seriously to see what's going on. Some of the symptoms are: fatigue, hair loss, joint pain, neck pain, IBS (diagnosed) and others. Is there an advise on what to ask my doctor? Should ask to look into my thyriod? For the past 3 years as well high Tsh but normal t3 and t4. I don't know what to do to be taken seriously aside from prescribing vitamin d everytime.

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@dlydailyhope

@apriljef, you really need to get a doctor who will listen to your symptoms and prescribe thyroid medication for you. Your TSH 6.5 is above normal range for TSH. Did you have thyroid autoantibodies show up in bloodwork?

I had not been diagnosed and treated for a long time for Hashimoto’s, thyroid nodule, hypothyroidism (after lobectomy which also found micro cancer). Thyroid problems can affect fertility and getting pregnant as well as all organs so it is important to address sooner rather than later. I do not feel well if my TSH is above 2.0 and feel much better at 0.3-0.4 TSH. Doctors need to listen to your symptoms because what is “normal” TSH for some may make someone else feel like a zombie that wants to lay in bed or in the couch all day. After my lobectomy, my TSH went over 4.0 and I just wanted to be buried at that point. It took a while for my TSH to come down after they started me on 88 mcg levothyroxine and then later increased me to 100 mcg. Keep advocating for yourself, your health and your quality of life! It is a matter of being proactive to prevent the negative impacts of a thyroid dysfunction.

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Thank you, I am really trying to figure it out. Tpo was negative as well as the ultrasounds showed nothing except a small cyst.

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@apriljeff

Thank you, I am really trying to figure it out. Tpo was negative as well as the ultrasounds showed nothing except a small cyst.

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@apriljeff
It would be good to learn more about what causes your body to work extra hard to create thyroid hormone which is elevating your TSH.

https://www.mayoclinic.org/diseases-conditions/hypothyroidism/diagnosis-treatment/drc-20350289
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@apriljeff

Thank you, I am really trying to figure it out. Tpo was negative as well as the ultrasounds showed nothing except a small cyst.

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Very important to keep your vitamin D levels normal.
Low D levels are associated with autoimmune diseases and high dose D doses can be helpful.
10 minutes of sunlight midday on 50% of exposed skin can stimulate natural production.
With some forms of IBD or microscopic colitis deficiency may be attributed to malabsorption.
The rheumatologist may suggest
a Dexascan for your bone density.

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I have 2 autoimmune conditions. I can only speak from experience. My doctors are engaged and they care, but there just isn’t anything they can do. Whenever they look, they find something. It’s to the point where I just don’t want them to look anymore 😂 If it is autoimmune, and not inflammation caused by an infection or cancer, there’s no cure and you won’t get better. If it’s an infection you’ll have a fever, a pustule, open sores or something like that. If it’s cancer your white blood cell count will be elevated. Mine always is. The symptoms you describe sound like you should try taking dietary measures first. Increase your b vitamins to help with hair growth (eat more fish). Spend more time outside in the sun, since sitting in the dark increases fatigue and decreases d vitamins. Joint pain can be caused by lack of exercise, because your body needs to move. I try to do some kind of workout or yoga daily. Sometimes -even for me- the simple solutions are the best ones. My husband had all of your described symptoms when I met him. He was extremely pale, played a lot of video games, had a lot of bread in his diet and not much else, only ate once a day, and didn’t spend much time outside. Acting sick can make you sick. I had to drag him out in the sun. Doctors can’t really know your lifestyle unfortunately in the like, 10 seconds they give you to explain the problem. You are your own best physician in that way.

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Fresh air and sunshine are great, but remember the sunscreen. I had a basal cell carcinoma removed a few years ago (Moh’s) and now I’m very conscious about it.

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@seniormed

Very important to keep your vitamin D levels normal.
Low D levels are associated with autoimmune diseases and high dose D doses can be helpful.
10 minutes of sunlight midday on 50% of exposed skin can stimulate natural production.
With some forms of IBD or microscopic colitis deficiency may be attributed to malabsorption.
The rheumatologist may suggest
a Dexascan for your bone density.

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I have collagenous form of microscopic colitis, took budesonide, a colon-specific steroid, for about 3-4 months - although initial relief from hellish diarrhea came in 3-4 days.

Vitamin D wasn’t recommended to me in response to that diagnosis but I have been taking it since I was tested and my level was 13.

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@lavendercottage

I have 2 autoimmune conditions. I can only speak from experience. My doctors are engaged and they care, but there just isn’t anything they can do. Whenever they look, they find something. It’s to the point where I just don’t want them to look anymore 😂 If it is autoimmune, and not inflammation caused by an infection or cancer, there’s no cure and you won’t get better. If it’s an infection you’ll have a fever, a pustule, open sores or something like that. If it’s cancer your white blood cell count will be elevated. Mine always is. The symptoms you describe sound like you should try taking dietary measures first. Increase your b vitamins to help with hair growth (eat more fish). Spend more time outside in the sun, since sitting in the dark increases fatigue and decreases d vitamins. Joint pain can be caused by lack of exercise, because your body needs to move. I try to do some kind of workout or yoga daily. Sometimes -even for me- the simple solutions are the best ones. My husband had all of your described symptoms when I met him. He was extremely pale, played a lot of video games, had a lot of bread in his diet and not much else, only ate once a day, and didn’t spend much time outside. Acting sick can make you sick. I had to drag him out in the sun. Doctors can’t really know your lifestyle unfortunately in the like, 10 seconds they give you to explain the problem. You are your own best physician in that way.

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That's what am planning to do. I think I reached a point of it is what it is. I have gone gultin free starting this week, I take vitamin D daily, I am being more aware of my physical activity, and I have yoga and meditation next to manage my stress. At this point since all my other tests are normal, it's watch and wait while being proactive with my health. I have been eyeing going to integrative medicine doctor (he is also an Md) buy sitting on it for now since it's really expensive. Am always open for any suggestions

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@celia16

Fresh air and sunshine are great, but remember the sunscreen. I had a basal cell carcinoma removed a few years ago (Moh’s) and now I’m very conscious about it.

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I wear sunscreen religiously even though I dont get sunburned

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@seniormed

Very important to keep your vitamin D levels normal.
Low D levels are associated with autoimmune diseases and high dose D doses can be helpful.
10 minutes of sunlight midday on 50% of exposed skin can stimulate natural production.
With some forms of IBD or microscopic colitis deficiency may be attributed to malabsorption.
The rheumatologist may suggest
a Dexascan for your bone density.

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I highly doubt he is going to do anything. On the health application I saw his response to me doctor that he doesn't need to see me since I have all others are negative. I guess he will be in for supervise in July since am already scheduled with him

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