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Hashimoto help, feeling defeated and desperate
Autoimmune Diseases | Last Active: 1 hour ago | Replies (28)Comment receiving replies
Hello,
My diagnosis of Hashimoto’s was over 8 years ago but my thyroid levels still remain in the normal however low ranges and my TPO was 163 two years ago. I do know that my Hashimoto’s definitely has “flare ups”. My voice becomes raspy, and I generally don’t feel good and am very tired even with good sleep. Now however with both Hashimoto’s and IGA Vasculitis I don’t know which one is flaring however because they are both autoimmune diseases the flares seem to cause similar symptoms although the joint aches and skin purpura are symptoms to the Vasculitis and it’s flare ups.
I am currently on 2000 mg of mycophenolate mofetil per day for the IGA Vasculitis and no med’s yet for the Hashimoto’s. I was started on Azathioprine but it elevated my liver enzymes significantly so that drug was terminated and I was then started on the mycophenolate. I have been on this for about 2 months and have had a CBC done every two weeks. I will have my 6 month check (since diagnosis ) at Mayo Clinic Rochester in mid January 2026.
I am not sure if the mycophenolate is working in terms of preventing the kidney damage (that will be assessed at Mayo) but my CBC’s are currently within the normal ranges other than a high platelet count.
I don’t feel as though the med’s are helping in terms of the joint pain and fatigue but I try to do other things to help with that. I am not able to take Ibuprofen or any NSAIDS as I currently have only one kidney. I try to eat well, exercise and get rest. I must admit that it certainly doesn’t help every day but I have learned to appreciate the good days and hope and pray for more.
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@jahm
I was on mycophenolate 1000 mg for a couple of months, a dose that my GI could tolerate. It was helping a little with scleroderma skin, but not with joints or inflammation.
Prior to that, I was on methotrexate IM, which is indicated for RA and scleroderma. It was helpful with inflammation in the joints, but it was making my skin flare ups worse. Some people do not have skin toxicity and are staying on methotrexate for years to reduce joint inflammation. It is a chemotherapy drug and may cause hair loss and low WBCs.
The drug that made the most difference in terms of elevating energy levels, was Humira IM. It is indicated for RA and Crohn's, TNF inhibitor. For some reason, it worked for me, particularly at its high loading dose of 80mg x 3. Made me feel like back to normal for 2 months. Then maintenance dose of 40 mg kept my response intact for a while, but later the energy levels reduced again. Or maybe I developed tolerance to the drug, as it is a biologic.
Actemra IM every 2 weeks, another biologic prescribed for RA and scleroderma, also worked well for the joints, but after a while caused hypertension and GI cramps. I was able to stay on it for 8 months and made a good progress with mobility and energy levels. Unfortunately, biologics have a tendency for toxicity build-up over time. Some doctors prescribe Actemra only once a month to reduce toxicities. It may still work at less frequent doses.
If you can tolerate mycophenolate at 2000mg, it may slow down disease progression over time. You still may see some effect on inflammation later on.
Thank you for sharing and all the best!