Hashimoto help, feeling defeated and desperate

@fritztraci

Welcome to Mayo Connect. I was diagnosed with Hashimoto's thyroiditis when I was 16. That was back in the 70s. I have been on thyroid hormone replacement since then. It does fluctuate, and occasionally I have to have my medications adjusted. I am not sure what testing was done initially to diagnose. For monitoring, my provider does a TSH blood test yearly.

You probably have already researched the subject. Here is information from Mayo: https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855

Is it your primary who is testing and monitoring, or have you seen an endocrinologist? Have they prescribed thyroid hormone replacement?

If you are not comfortable with your provider's treatment plan, have you considered a 2nd opinion?

I was diagnosed with Hasimoto's many years ago, I am 79. My endocrinologist treated my thyroid with radiation and put me on Synthroid. The dosage may change but I get TSH, T3, and T4 blood tests every 6 months. I didn't have any adverse effects from the radiation. I am a normal weight for my height.
Please see an endocrinologist and get a second opinion from an endocrinologist.
You don't need to feel this way. Many blessings!

fritztracy, Hashimoto's is often accompanied by other autoimmune systems. Have you had an ANA panel. Have you been tested for Celiac's disease as it is often seen with Hashimoto's.
Your doctor is wise about not treating with normal T4 and TSH. But the flushing, dry skin, depression and general ill feeling could be symptoms of other autoimmune complications. Hashimoto's and Graves are seen together in about 20% of patients. If you aren't seeing an endocrinologist (or rheumatologist) you might benefit. If you are seeing someone with this expertise, you might ask for more testing. Bless your health.

In addition to seeing an endocrinologist, you should consider seeing a functional medicine doctor, and if you can find a functional medicine doctor that is also an endocrinologist, that's even better. Functional medicine looks for the root cause of disease before throwing pills at you. I feel like I lucked out by finding a functional medicine practitioner who has a specialty in rheumatology to help me navigate GCA. Her second opinion is very helpful in providing info that my regular rheumatologist doesn't seem to have time to do. Functional medicine doctors do not take insurance, but in my opinion is so worth the cost and they provide info that allopathic doctors don't.

I was diagnosed with Hashimotos in 2018 and have been treated with Levothyroxine 50 mcg daily since. My TSH T3 and T4 are monitored yearly. Thankfully I have been symptom free.
You have not mentioned your age. A lot of the symptoms you mention can also be attributed to perimenopause which can last for years.
Sometimes it just takes the right doctor to ask the right questions and get to the root cause.
I hope you get answers soon.

Hi there! You need to find another MD or an NP who is ACTUALLY listening/ hearing you. The Clinician needs to be one who looks at the patient AND symptoms / clinical findings. I had the EXACT scenario 25 yrs ago. Thank God my friend is an NP who consulted with a Chief of Endocrinology who agreed putting me on Synthroid/ Levothyroxine. Within weeks I was on the mend and amazingly felt better. It took about 6-12 months to stabilize but I have been fabulous ever since. The other issue with thyroid diseases it has comorbidities which needs to be looked. Bottom line..get yourself a new MD and keep looking til you find one who is hearing you. I personally am tired of Clinicians going by lab data only. Which means they are inexperienced in the area and are not motivated to research your issue. Not addressing thyroid issues leads to more complex health issues down the line. Good luck and keep advocating for yourself!!

You need to see an Endocrinologist now!!!!

My daughter was seen by an endocrinologist at MD Anderson in Houston due to very similar symptoms. It was the best decision she could have made. Her thyroid levels usually remained within normal range in spite of Hashimoto's, but the goiter and growth of the thyroid gland, along with the inflammation, was making her ill. She waited longer than she should have to have her thyroid removed, it became a more complicated surgery and they found a small cancer developing. Many people don't know that places like MD Anderson treat certain conditions aside from cancer, and they are excellent at diagnosing and surgical treatment.

I’m going to try to help you with what has worked for me. I was diagnosed with Hashimoto’s and Hypothyroidism 3 years ago after a big surgery to remove 18” of my colon due to severe diverticulitis. That, thankfully, has healed. I was put on Thyroid medication, Synthroid 125 mcg and Cytomel 5 mcg and over time my levels came down, so I have eliminated the Cytomel and went down to 75 mcg in Synthroid where I’m feeling good at. I have my blood levels checked every 6 months to see if I need a medication adjustment and I’ve been staying here. I also, due to having Hashimoto’s, have eliminated eating gluten, dairy and soy products. They are inflammatory foods and I was blowing up like a balloon quickly. I also had a food sensitivity test done and am cautious about eating those foods as well which are also inflammatory: they’re called Nightshades and they include tomatoes, potatoes, eggplant, zucchini etc. I only eat them occasionally and feel ok when I do. I also take many supplements such as a multi-vitamin, biotin for my thinning hair which has grown back, D-3, Magnesium, Potassium and the list goes on. I should also tell you that I am currently suffering from Long Covid as well. It’s been a hellish 3 years! Lost both my taste and smell and still don’t have that back. I am working on it! By eliminating these foods, I believe you will loose that body bloat. Give it a try, it doesn’t cost a thing and I bet you’ll feel better.