Connect
Help, doctors have given up trying to figure out what’s wrong!
I’m 52, 18 years post menopausal. For about a year and a half to two years, I’ve been having issues and, at this point, all the doctors I’ve seen have either given up or focused on the one thing I know it isn’t.
I’ve had massive weight gain even though I don’t eat a lot and I eat healthy foods most of the time. I’ve also had issues with being tired all the time, my hair stopped growing for a time, my nails are brittle and I’m having trouble regulating my temperature (always running hot and cold). I’m also on medication for bipolar disorder. I’ve had GPs blame it on me overeating and eating the wrong foods and they don’t believe my husband or I when we tell them I don’t do either of those things. I had thyroid testing and my T4 came back low for normal standards (the lab my doctors use have a different set of numbers that are much lower, however). I explained to my GP that when my levels were .85-.9, I felt better. Now they’re at the low end, .6-.64 (normal by the lab they use) and I feel awful. He agreed to put me on levothyroxin and I was feeling a bit better for 6 months before I felt lousy again. He did bloodwork and found my TSH dropped and my T4 hasn’t gone higher. He told me to stop the med and retest in a month. My TSH went back to normal levels but my T4 dropped again. So I saw an endocrinologist. She tested a lot more than my GP and said they go by TSH, not T4. They did a cortisol test. Twice it came back low so they did the stimulation test and it came out normal. So they all say I’m fine, but nothing has changed and I can’t lose weight no matter what I do. I know it’s not my psych meds, I’ve been on them forever with no issues with these particular ones. So if I’m not eating too much or the wrong things and it’s not my meds… What is it?
Recently I’ve been getting more headaches than usual and they’re trying pretty bad. I know the endocrinologist stated that I had a traumatic brain injury from a car accident I had at 19 (I don’t think it was that bad, but she did). She didn’t think that messed up anything, so I don’t think that’s it.
At this point, I’ve gained so much that I don’t want to leave my house because I’m embarrassed by how I look. I’ve always been very thin and didn’t even gain much with two pregnancies. I’m so uncomfortable… Being so overweight hurts my joints so much as well as my feet. At night, when I lay down on the sofa to watch tv, I can’t lay comfortably because I can feel the fat inside gushing up into places and it hurts. I have a hard time laying down at night because it’s so painful, these inner fat rolls. Worse, thigh my legs don’t look heavier, I can’t kneel and rest back on my calves because it’s incredibly painful. It feels as if they’re swollen but they’re not.
I’m at a loss and I don’t know what to do anymore. My doctors and those I’ve gone to for second opinions have given up. All they want to do is prescribe a GLP1, but I don’t trust those and I don’t see what it would help as I don’t have a large appetite. They’re all focusing on my eating habits and that’s not the issue. I can’t even exercise anymore to try and lose weight that way because my feet and hips hurt so badly when I take a short walk because of the weight gain.
Does anyone have any ideas? I’m open to entertain any thought at this point.
Like
Helpful
HugInterested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.
Connect
@minnesota10 yes, my numbers were high if I remember right.
@kitsu73 Welcome to Mayo Clinic Connect! It is a very devastating thing to feel like “doctors have given up trying to figure out what’s wrong”. I don’t really think that is true but it does seem like your health situation is challenging and complicated. This is especially true when there might be more than thing involved. It gets difficult to sort it all out. One thing is for sure. You are not alone. Consider all the members that have responded here with similar experiences of their own. We members aren’t supposed to diagnose or prescribe but instead we offer our own stories to offer hope and encouragement.
This one’s mine. 50+ years of diabetes that resulted in complications of peripheral and autonomic neuropathy plus chronic kidney disease (CKD). I was also diagnosed with hyperthyroidism/ Graves’ disease about 25 years ago. I also have obstructive sleep apnea. How is this hopeful or encouraging? Well, the symptoms you describe in your original post reminded me of thyroid problems.
There are a lot of tests for thyroid function. Some of them are inversely related. Looking at test results, medication dosing and symptoms can present a complex, hard to figure out picture. My Dr diagnosed my hyperthyroidism / Graves Disease, treated it and told me it is common for the condition to flip to hypothyroidism in time. She continues to monitor me for that. My husband had thyroid cancer. His thyroid was removed and he requires Synthroid /Levothyroxine for the rest of his life. The levels have to be monitored and the dose adjusted from time to time. My daughter was diagnosed with hypothyroidism. She takes the same med as her dad and has found her levels must be monitored and the dose adjusted at times. We’ve all had similar symptoms to what you describe (weight gain, tired, hair thinning & loss, brittle nails (( I also have brittle bones)), difficulty regulating temperature, muscle & joint pain).
Many members described similar symptoms and attributed it to several things. Our family has similar issues. My husband and I both have sleep apnea. My husband and daughter have been diagnosed and treated for depression. My husband has found that sometimes psychotropic meds needs to be reevaluated, changed &/or the doses adjusted especially if they’ve been prescribed for a long time. I’ve found the same thing to be true of my diet. It is helpful to measure & record what you eat, have a fresh pair of eyes (dietician) review it and see if they can make helpful suggestions you haven’t thought of.
Again, these are things that I and my family experienced and did that proved helpful to us. Many of the members here described similar things. The most common idea was endocrinology. It sounded like you had some success with that. Could you try again? Ask about thyroid, diabetes, parathyroid, sleep apnea. Maybe it is time for a follow up with psychiatry to review your meds for bipolar. Maybe you can see a dietician to find out if there’s anything you haven’t considered that would be helpful. I’m not saying that you eat too much or eat unhealthy things. I’m saying that sometimes the body needs a change in the way one cares for it.
Oh, last but not least, I noticed your mention of GLP1 medication. My daughter started a GLP1 medication recommended by her provider team. Those meds have potential side effects (all meds do), but she has experienced some good results and seems satisfied with her choice to give it a try.
Can you review and consider the comments here? Would you be willing to share what if anything you’ve decided and let us know how you are doing?