Afraid will not be taken seriously

Your symptoms sound a lot like mine a couple of years ago. I had extreme joint and muscle pain, as in couldn’t get out of bed myself , couldn’t reach behind my back to hook my bra, couldn’t tie my shoes, couldn’t climb stairs, the list goes on. Basically spent 7-8 months in my recliner on a heating pad. Before this all started in earnest I was diagnosed with Sjogerns and osteoporosis and low Vit D. I chose not to
Take osteo drugs and instead worked with a functional medicine doctor to develop a regime of supplements to take as well as a correct diet. Since I could hardly move I didn’t do the exercises I should’ve been doing. Slowly, and I mean slowly, I began to get better. I am now back to my old self. I still have the dry eyes and mouth that come with SS. But the muscle and joint pain is gone, other than my arthritic joints. I never got a good diagnosis of what was going on with me. Lately I’ve seen a lot of YouTube videos and read a lot about Vitamin D deficiency. It sure sounds like what was happening to me. My beginning levels were 23 and now they are 70. I took 10,000 IUs daily for 3 months then dropped to 5000 IUs. I should’ve done the 10,000 IUs then tested my levels again.
I believe my levels were low because I have digestive issues and don’t digest my food properly. I have gallbladder problems and don’t eat a high fat diet.
If you supplement Vit D, you need Vit K2 as well. They work together.

I was (undiagnosed) gluten intolerant for decades, until I got H1N1 flu 14 years ago, which triggered celiac. There is a fairly easy "test" to see if one is intolerant to gluten or other foods. It is an elimination diet. For gluten, you basically avoid anything with gluten for at least 2 weeks and preferably longer; it it harder than it seems because most food contains it (wheats, rye, barley, spelt) and most restaurants and prepared foods are not safe from cross contamination. Oats are OK if they are certified GF, otherwise not safe due to crop rotation and processed in a plant with wheat. You then eat gluten and see if you have a reaction (GI problems, bloating and associated weight gain, skin rash, brain fog, or many others). Celiac is a malabsorption disease, so I also take D supplements. I also am hypothyroid (25 years) so take synthroid; my doctor doesn't believe me when I say I function best at TSH numbers close to 0.4. My TSH is around 3, so I still have a minor hypothyroid symptoms (normal free T3 and T4). Being an athelete I see the difference in my energy levels at larger TSH numbers. BTW, I have the HLA-DQ8 0302 haplotype. Around 40% of the population has HLA DQ2 or/and DQ8 so celiac only happens if the marker is triggered. What percentage of the population is gluten intolerant? Who knows because there is not a good test for it. I'm just glad that more people are avoiding gluten because it makes it easier for me. Doctors don't believe me either, and I'm a PhD research scientist. The nice thing about celiac and gluten intolerance if that they can be controlled by not eating something (thankfully not chocolate).

Often Vit. D levels are low when you live in areas without sunshine or during the winter months. Also, Vit. C is needed to absorb the Vit D……. It is suggested that you take Vit C and Vit D together to get the best absorption.
Kim

Agree Vitamin D, thyroid issues or Sjogren's may cause it. Sjogren's requires either positive blood or lip biopsy. It's systemic and progressive so new weird issues evolve then wax and wane. Vitamin D, iron, thyroid, protein levels and inflammation markers can be off in Sjogren's. Eyes, mouth, nerves, muscles, joints, skin and any other organ can be affected. It mimics Lupus and thyroid disease. Doctors can assume it's age, menopause, depression or exaggeration so it's late diagnosed. If Sjogren's, stress and inflammation are things to control. Plus monitor for lymph node swell or abnormal labs. I take C & D but too much of that may cause issues. I'd see a Rheumatologist and Endocrinologist if not already. If it's thyroid they won't treat unless it's way hi/low. Hope you get help soon.

Update: I went to the doctor and was actually heard. Done ana cascade testing, tsh, t4, t3, vit D, and thyriod antibodies. All came back normal except my tsh is elevated at 6.5. Doctor ordered ultrasound for my thyriod too, and all normal except little cyst on the left side, and said we don't need to do anything about it. I don't know where to go from there, she have referred me to a rheumatologist I will be seeing in July. I dont kmownofnam gaslighting myself or if it's all in my head at this point.

A Thyroid Stimulating hormone (TSH) of 6.5 is likely subclinical hypothyroid (normal range is about 0.4 to 5.5). Did they increase your levothyroxine (synthroid) to see if that decreases your symptoms? TSH is produced by the pituitary gland at the base of the brain and its use is to regulate thyroid hormones. Doctors tend to embrace T3 and T4 over TSH. When my TSH is around 3 my T3, T4, and free T3 and T4 levels are still normal range, even though I have hypothyroid symptoms of fatigue, GI problems, and weight gain. I take D3 because that is also low (partly I'm 69 and have celiac); I get enough sun. https://my.clevelandclinic.org/health/diseases/23544-subclinical-hypothyroidism https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5922674/ https://medlineplus.gov/lab-tests/tsh-thyroid-stimulating-hormone-test/#:~:text=The%20pituitary%20gland%20makes%20thyroid,your%20thyroid%20to%20work%20harder.

I am not on any thyriod medication and they haven't even discussed that or subclinical hypothyroidism with me, however I am aware of it. I am trying to see if I can improve it with diet but I know it helps with managing it not treating it. I am a female in my.mid 30s, so I don't know if that counts.

I'm 69, and I started synthroid 25 years ago (a girlfriend has been on Armour for decades). My hypothyroidism probably started years before that. Most hypothyroid meds replace the hormones that your slacker thyroid aren't producing enough of, as opposed to a lot of medicines that treat symptoms. I eat seafood for iodine, which hasn't made a difference in my TSH, T3, or T4 numbers, and a mostly FODMAP diet (I also have celiac). Exercise, avoiding stress, and weight are good for thyroid as well. After going on synthroid my hypothyroid symptoms went away; one still has to have bloodwork to ensure your numbers are within range. Women are more likely than men to have thyroid and autoimmune disorders, not sure why.

@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.

@aprilljeff …see previous response (I did not use your full name to ensure you received an email notification…left off a ‘f’).