Afraid will not be taken seriously

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.

Some advice. Don't worry that You will not be taken seriously. You will be right. Dump your situation on your doc. It will help you find the right words if you ever do find a doc who cares enough to work for his pay. My genetics and other tests say I have a bunch of cancers, nerve issues and soft tissue issues for which I have seen about 30 so-called specialists. I have no more hope of finding anyone to help me; so I just do the best I can, and wait patiently to die. My wife has serious Alzheimer's, and most of the time can not remember my name (65 years married) or the names of our 4 kids or any of our 30 great grandchildren)gets the same response. "Come back in a couple years and we will see whether anything has progressed." I got the same story from several of the major clinics. Phooey. oldkarl

As a health professional and a patient who is currently experiencing this, it maddens and saddens me. I have an autoimmune disease on chronic high-dose steroids (immunosuppressed). In 2020, I developed external nodules on my Left forearm. Notified my specialists that I had "monsters growing inside of me". No one listened until 6 mos. later my Ortho said he would not operate on my knee until I identified. Of course, it became an emergent issue and with the help of a prior co-worker, I got an appt with Infectious Disease at my place of employment which is an Academic Medical Center. He sent me to Derm for a biopsy. The specimen was slow to grow enough to identify at the species level so was sent to Univ. of Washington for identification by its DNA. In the meantime, I asked my ID MD if imaging was needed to see if this organism was anywhere else, but he denied it. After 6 weeks, it came back as Non-tuberculin Mycobacterium Chelonae, disseminated disease. I was placed on double STRONG antibiotics for 14 mos. ID declared my infection resolved and declined imaging once again stating there is not imaging that can capture this infection.

Fast forward to this past October, I started to have pain in my left hip and outer thigh area when lying on my side. I still had discomfort with meds and a heating pad, so I decided to see if pressure from rubbing would help. Low and behold, I discovered nodules. Over the next couple of weeks, I gradually felt more and a large mass/cyst on my left inner thigh. Reached out to my ID and he essentially said that is nothing for him to handle because you can't get the infection I had again and that those nodules are most likely lipomas. Due to my infection risk, my Rheum sent me to ED and I was admitted When discharged, I was to follow up with my ID who still said that I had no infection for him to treat and that my nodules were essentially imaginary.

After ID sent me to every specialist who I knew would not biopsy and or treat my nodules or cyst, I now have them throughout both of my upper legs. When expressing concern about the increased # of nodules via EHR messaging, he replied that I was obese, overly anxious about insignificant clinical symptoms and have nodules that only I can feel... and he has yet to even lay hands on me to even evaluate for these nodules!!!

Needless to say, I am awaiting an appointment to be evaluated and treated as applicable at Vanderbilt... If this happens to patients with medical knowledge, I'm certain it happens more often to those who do NOT and this hurts my heart. They are sent home from the hospital or clinic with significant health risks of which they are clueless. Thankfully I am in Nursing Informatics now, as I could not be involved with such patient management decisions.

I apologize for the lengthiness and pray that you all do NOT have this type of experience!

Best Regards.

Beth

As a health professional and a patient who is currently experiencing this, it maddens and saddens me. I have an autoimmune disease on chronic high-dose steroids (immunosuppressed). In 2020, I developed external nodules on my Left forearm. Notified my specialists that I had "monsters growing inside of me". No one listened until 6 mos. later my Ortho said he would not operate on my knee until I identified. Of course, it became an emergent issue and with the help of a prior co-worker, I got an appt with Infectious Disease at my place of employment which is an Academic Medical Center. He sent me to Derm for a biopsy. The specimen was slow to grow enough to identify at the species level so was sent to Univ. of Washington for identification by its DNA. In the meantime, I asked my ID MD if imaging was needed to see if this organism was anywhere else, but he denied it. After 6 weeks, it came back as Non-tuberculin Mycobacterium Chelonae, disseminated disease. I was placed on double STRONG antibiotics for 14 mos. ID declared my infection resolved and declined imaging once again stating there is not imaging that can capture this infection.

Fast forward to this past October, I started to have pain in my left hip and outer thigh area when lying on my side. I still had discomfort with meds and a heating pad, so I decided to see if pressure from rubbing would help. Low and behold, I discovered nodules. Over the next couple of weeks, I gradually felt more and a large mass/cyst on my left inner thigh. Reached out to my ID and he essentially said that is nothing for him to handle because you can't get the infection I had again and that those nodules are most likely lipomas. Due to my infection risk, my Rheum sent me to ED and I was admitted When discharged, I was to follow up with my ID who still said that I had no infection for him to treat and that my nodules were essentially imaginary.

After ID sent me to every specialist who I knew would not biopsy and or treat my nodules or cyst, I now have them throughout both of my upper legs. When expressing concern about the increased # of nodules via EHR messaging, he replied that I was obese, overly anxious about insignificant clinical symptoms and have nodules that only I can feel... and he has yet to even lay hands on me to even evaluate for these nodules!!!

Needless to say, I am awaiting an appointment to be evaluated and treated as applicable at Vanderbilt... If this happens to patients with medical knowledge, I'm certain it happens more often to those who do NOT and this hurts my heart. They are sent home from the hospital or clinic with significant health risks of which they are clueless. Thankfully I am in Nursing Informatics now, as I could not be involved with such patient management decisions.

I apologize for the lengthiness and pray that you all do NOT have this type of experience!

Best Regards.

Beth

@beth71 - Thank you for sharing this. How absolutely maddening!

I am not so experienced in this kind of situation as you are, but my first reaction was - change your primary care doctor (is that the "ID"?) !!

Maybe not an option for some reason/s, but as you described and must have experienced it, the "gaslighting" coming off, at a minimum, as a lack of professional concern and medical attention, is greatly troubling, but as we hear from many others here, not uncommon.

Every patient needs to be as well-informed as they can be, yet it is on the professional/s to use all available knowledge and latest developments to the benefit of patients. I don't understand how this practice is tolerated across the board in the medical profession. If it is due to some kind of 'unrelenting, unreasonable pressure' from the monolithic insurance industry, then who is responsible for enabling and perpetuating that, to the "dis-ease" of compromised patients? How can there not be accountability?

Not intending to start a separate discussion on the insurance industry here, but if that is the source of the problem, as big as it is, where is the push and action toward reform? (Rhetorical Q, for now. 🙋‍♀️)

You are correct in that insurance causes some medical care restrictions, but unfortunately, this is an arrogant Infectious Disease MD who says he only treats diagnosed infections. The kicker is I did not have a diagnosis before I went to him the first time. He is adamant that it is not a reinfection and that he more than adequately treated me, but I and he has no clue beyond visual inspection of my forearm. That is scary since my disease can affect numerous organs/systems since it is Extra-Pulmonary, making it more of a diamond in the rough. These infections are rare and most affect the lungs, making mine more rare than rare 😒.

Had an Ultrasound of my upper legs yesterday. Radiologist gave measurements and gave fat necrosis as a possibility but no definitive diagnosis. That only occurs from trauma, surgery or some kind of injury… if not from these, pancreatic issues are the root cause like pancreatitis or pancreatic cancer. I have a pancreatic dysfunction with hyperinsulinism. Have found research related to fat necrosis and missed insulinomas. A biopsy is needed to determine if this is an infection or endocrine issue…

Either way, prayers for answers with appropriate treatment are needed. My medical challenges have taken me on a very long journey….

Beth