Afraid will not be taken seriously

Is there any reason your Vitamin D level can’t be brought to normal? Did you have covid?

My vitamin D levels were very low before Covid as well. As soon as I stop taking the supplement, it drops again

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.

I think working towards a good Vitamin D level is a good idea too. I was deficient years ago, but got my levels up with capsules. After getting it up, even though it wasn’t technically low, when I later mentioned some muscle pain to my endocrinologist, she suggested that I increase my daily intake to 3000 units per day. Not long after that, my pain subsided. I continue to take that dose and my labs show I am in normal range. I was also deficient in B12 and take that supplement too.

My mom is also Vitamin D deficient. She was recently 14 on her blood test! She is taking 4000 units daily to get it up. She takes Vitamin B12 shots and will for life. She has neuropathy from low vitamin levels. She has pain in her feet and legs, muscle pain, bone and joint pain, severe fatigue, stomach upset, skin rash, and anxiety. We hope she will improve as her levels stabilize.

I hope your doctors are able to figure it out and help you feel better. It’s frustrating to have symptoms and not know why. I have something similar to that now. I just keep trying to rule things out until we figure it out. I don’t think my doctors judge me. I’m the patient. They are there to help me.

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.

Mine was 10 and the doctor said she wanted it to be at least 60. I take it daily but if I stop it drops drastically again. I will definitely update once I have my appointment with my doctor, I started Journaling all my symptoms since I am forgetful

Hi. A high tsh should be looked at to see if you are hypothyroid. Not a doctor but there was a time my tsh was clearly suppressed in the face of Normal T4 and T3 hormones. My endocrinologist at the time gave me meds for 6 months. These days I have nodules in my thyroid. Don’t know why yet. Point being have it looked into - I would.

I have seen rheumatologist for muscle and bone pains. He did extensive bloodwork that looks for different things, also a ANA test with a result that isn’t negative might have a reflex panel. It did for me. I had a low timer, speckled pattern so he tested me for SLE/negative for that. His opinion was sjogrens.

I’ve had positive ANA’s in the past, always the same titer.

What I recommend (which is what my guy tells me) is to give the doctor chief complaint then the symptoms you have. Let the doctor doctor you. I do the same thing. So, this relaxes me a bit. Give him your medical history.

If nobody has diagnosed or treated you, a gp/pcp should be the one to advise you to either see a specialist or he can do preliminary exam and tests and guide you.

I’m seeing pain management again. This time I will be more prepared and armed with questions.

We are our own best advocates.

I hope you feel better and get treatment and answers.

Did you have a lip biopsy?

I never had a lip biopsy. My dry mouth and eyes were treated so i figured why get it.

I’ve been on physician ordered D3 supplement for several years. Even with 50k iu a week I’m barely in the normal range now.