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Afraid will not be taken seriously

Autoimmune Diseases | Last Active: 5 days ago | Replies (54)

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@emo

I don’t want it to sound like I’m dismissing your symptoms; I promise I’m not, but vitamin D deficiency can cause many of the symptoms you’re experiencing, and it could take a while to recover. It may help to at least rule that one thing out so that when you speak with a doctor there would be less of a question of it’s contributing to your symptoms.

Did your doctor put you on high dose vitamin D temporarily? I was vitamin D insufficiency, and had to take one high dose pill per week for a month until my level was normal, and now I need a regular supplement. I have darker skinned and live in the Midwest, so that explains my vitamin D insufficiency.

Were your doctors able to identify a possible explanation for why your vitamin D was so low? That would be a good question to ask if it’s not been addressed yet. I wonder if that might also be a clue—it could be a cause or a symptom of something else. For example, Celiac can cause vitamin D deficiency, and it’s rare, but possible to still have it with normal blood tests.

As a person with chronic pain, fatigue, and difficult to diagnose conditions, I can share that sometimes it doesn’t matter what you say and a provider who’s not open-minded or committed to helping you dig out of this could still be dismissive. I’ve found it’s most important to find a care team that believes you, is willing to help advocate for you, and consider options.

Now, I just try to be honest about what I’m experiencing. When I’m seeing a new provider, I send them a summary in my own words of my symptoms, the tests and treatments we’ve tried, and I highlight my goals and questions for them specifically. If I can, I get that letter to them before my appointment, and it’s even better if my PCP can contact them ahead of time.

It could be long COVID, but you’d want to work with your doctors to rule other explanations out. You mentioned you were diagnosed with IBS. It’s not fun, but did you do a full work-up to rule out other GI conditions as well? But since the vitamin D deficiency is the one thing you know for sure, I feel like I’d want to get that under control first. That way maybe things get a little better and you can tick that box off while you continue to investigate your symptoms.

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Replies to "I don’t want it to sound like I’m dismissing your symptoms; I promise I’m not, but..."

Thank you so much for your kind words. I actually took 50000 units once a week then took normal vitamin D supplments afterwards. Vitamin D did help with my mood specially in winter time but didn't improve any of the other systems. I didn't mention it but the reason I took the tests because I got extermly worried. Lately I have been having sudden onset of exterme fatigue and slurring in words, it started happening regularly that I finally noticed it.