Hashimoto help, feeling defeated and desperate

@lkirnbauer
Just noticed and read your reply. Though I don't think I have Hashimoto"s, (I haven"t tested.) I have been suffering from Long Covid episodes for the last 3 years.
My most recent was the worst so far. (3 months and counting). I had around 20 Symptoms. Covid researcher/Specialist, Suggested Colchicine 0.6mg per day, for 2 weeks, for inflammation. ( OFF prescription - It worked, but still had symptoms of covid). I also saw a cardiologist for 1 incident of AFIB?). Lost confidence with system after seeing cardiologist. ( bad experience- when dealing with all my other symptoms! )- to me).
Began my own research, looking at my symptoms. This took me to "depleted thyroid symptoms". I've been Taking Lugol's iodine 2%, for 6 weeks now. My covid symptoms, Personality disorders, GI tract problems ,muscle atrophy, FATIGUE, weight lose; etc etc... have all diminished to the point that I am feeling much better. I haven't felt this good in along time.

My question is, have you been dealing with long Covid for 3 years also? I'm asking because your reply sounds very similar with what I'm reading, and seeing in myself.? Long Covid has a lot of similar symptoms and affects various parts of the body. Personally, I don't feel the "Doctors", have all the answers - no disrespect!

@aikomike Yes, I’ve been dealing with Long Covid for over 3 years now (December 14, 2022). I haven’t had one doctor treat my Long Covid, they just inform me that I have it, but not one has done anything to help me! I’ve done my own research and have tried several different treatments on my own. So far, I’ve had 7 Stellate Ganglion Block injections which are injections into your parasympathetic nerves in your neck line area that are of Lidocaine. The 7th injections took my PTSD/Anxiety way down. I also did acupuncture, which I don’t think did much. I am currently having Green Violet Laser Light Therapy through my Chiropractor’s office and that has given me glimmers of smells, but nothing lasts. I am also wearing a 7 mg. Nicotine Patch as it’s suppose to take inflammation away and possibly give you more energy. I have found the latter with the patch. It’s not a lot of extra energy, but I feel I can get more things done during the day while wearing it and I don’t take it off at night. I have never experience a bad dream or nightmare from wearing it. I don’t dream at all! I also, besides having Long Covid, have Hashimoto’s and Hypothyroidism. I take medication for the Hypothyroidism, but I stopped eating gluten, dairy and soy products for the Hashimoto’s, due to them being inflammatory foods and the bloat has stopped. I have researched treatments on my own as not one single doctor has helped me with that at all! Doctors are failing us right now and so I’ve begun my own research. The Chief of Neuro and Infectious Disease at Northwestern Chicago was worthless. He told me I would NEVER regain my taste or smell. He didn’t even have anything to back that theory up! Worthless! I’ve learned that if we don’t care for ourselves in this regard, nobody else will! Wishing you all the best in your healing.

Re Hashimoto, of course there is something you can do for it. First, you need to see an endocrinologist. I have Hashimoto’s and it’s an autoimmune form of hypothyroidism. After bloodwork is done, you are started on thyroid medication. Small doses at a time with your T4 and TSH levels being tested roughly every 6 months until you are at a stable level. You will stop gaining weight, however it is up to you to lose the weight you have already gained. As to the diarrhea and cramping immediately after eating, please see a gastroenterologist. I have microscopic colitis and when it comes out of remission, that is what happens to me. However, there are many other causes as well, but a GI would be the best person to diagnose this problem.

@aikomike, have you thought of taking an herbal approach in dealing with Long covid? If you do make sure to let your doctor know.

Good Morning,
I have was diagnosed with Hashimoto’s several years ago, Recently I have been diagnosed with IGA Vasculitis so between the two there are days that I refer to as”not being able to get my feet underneath me” having such a lack of energy. I have also experienced the GI problems and not wanting to go for my morning walk after breakfast and coffee. It occurs after other meals but primarily breakfast.

It can definitely be a depressing a situation. I don’t mean to make this sound trite or belittling but sometimes there are things we must live with that cannot always be cured. What we can do is try to control all those things that we can:
Even if we don’t feel like it GET SOME EXERCISE there is research that definitely says the endorphins help us to feel better.
Write down what we eat. Often time the calories are higher than we think and the salt content is extremely high. DRINK water and keep your body hydrated.
Try to read something that gives us hope or inspiration in the morning or at some point in the day. We cannot go through these times alone and we need to lean on God for providing us with strength and courage.
Try to focus on one day at a time and even write down what was good in that day to help with our mind set.
If we find something that makes us feel better as far as a supplement or herb take it but perhaps talk to your pharmacist to know possible interactions with other medicines that you are taking.
Sometimes finding a new doctor that you can at least talk to and acknowledges our health issues can be beneficial.

There are so many people in this world struggling with horrific health issues and not all can be cured. I have struggled with Hasimoto’s , autoimmune issues for years and now recently IGA Vasculitis. We can ask why us but that doesn’t help and puts our minds in a defeating mind set. No doubt there are bad days ,weeks and years. Take it a day at a time and do EVERYTHING that we can that we can control to help our situations.

Auto immune issues are really a struggle and not cured but “handled”.
Believe me I almost never feel good but cherish the days that I do and know that those days are possible. Keep advocating for yourself, take with others and if possible find a group or individual that can help you with support. Also PRAY for strength, courage and patience to help you through the toughest days but we must be honest with what we are doing to help ourselves.

I have struggled with these issues for years. Know that it is possible even if there is no real “fix”. I know this may not be the response you might want to have heard but I can tell it can all help.

@ndough

I also have Hashimoto's - since 2012. Not on hormone replacement yet.

Do you still have high levels of TPO Ab Thyroid Peroxidase Antibody? My TPO is currently at 190 when normal limits are 0-34, which indicates that my body is still attacking my thyroid in autoimmune fashion.

@jahm

My symptoms are very similar. I have Hashimoto's since 2012. My thyroid hormones levels are low, but not critical enough to initiate hormone replacement. I gained some weight and lost some energy back in 2012, but nothing critical happened from Hashimoto's alone.

Then in 2022, I was diagnosed with Systemic Sclerosis or scleroderma. Extreme fatigue, inflammation, GI issues. Vasculitis is a big part of inflammation associated with SS, in addition to skin thickening and fibrosis. Multiple immunosuppressive therapies were tried, but none really worked. Humira was most helpful with joints and GI inflammation. Ibuprofen 200 mg coated tablet taken with food - makes it better for 3-4 hours. But need to be careful with NSAIDs and potential GI bleeds.

Do you have anything that worked prescribed for IGA Vasculitis?

@altabiznet My levels are fairly normal because I’m taking thyroid medication. Why are you not?

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.

@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!