Hashimoto's Disease

My thyroid levels are normal but they checked for Hashimotos and my levels were off the charts. It’s supposed to be 100 or less. Mine is 1000. They said there is nothing they can do until my thyroid finally dies. Then they can give me medication. I don’t understand this logic. Have them do the blood test for Hoshimotos.

I have both hypothyroidism and Hashimoto disease. When first diagnosed in ‘23, my TPO levels were just over 100. TSH levels were around 200. T3and T4 were and always have always been normal, up to the last labs taken. There were nodules as well, confirmed by an ultrasound. At the time, I was going to a specialty clinic and the doctor prescribed Armor 30. It was not effective. I remained fatigued. For about a year, we tried different strengths; 60, which affected my heart and caused palpitations. Then I was put on 45, which was 90 split in half. Still no improvement with fatigue. Within that year, I was put on Levothyroxine 100 mcg, then 112. Still no change by late May. Apparently I was over medicated and the higher doses caused weight loss and that is when my TSH levels crashed to 0.01.
Currently, I am on 50 mcg, which showed normal labs; TSH 1.35, in December and my PCP felt no nodules during my last physical but since around early winter I have been getting fatigued and have decreased energy. I’ve about resigned to being stuck here, but am not happy. I would like to know if a “normal” TSH level, according to my doctor is actually too low for me and if it increased would I feel better. Also, what causes the fatigue, high TPO, or low TSH, or both since they affect the thyroid.

I have both hypothyroidism and Hashimoto disease. When first diagnosed in ‘23, my TPO levels were just over 100. TSH levels were around 200. T3and T4 were and always have always been normal, up to the last labs taken. There were nodules as well, confirmed by an ultrasound. At the time, I was going to a specialty clinic and the doctor prescribed Armor 30. It was not effective. I remained fatigued. For about a year, we tried different strengths; 60, which affected my heart and caused palpitations. Then I was put on 45, which was 90 split in half. Still no improvement with fatigue. Within that year, I was put on Levothyroxine 100 mcg, then 112. Still no change by late May. Apparently I was over medicated and the higher doses caused weight loss and that is when my TSH levels crashed to 0.01.
Currently, I am on 50 mcg, which showed normal labs; TSH 1.35, in December and my PCP felt no nodules during my last physical but since around early winter I have been getting fatigued and have decreased energy. I’ve about resigned to being stuck here, but am not happy. I would like to know if a “normal” TSH level, according to my doctor is actually too low for me and if it increased would I feel better. Also, what causes the fatigue, high TPO, or low TSH, or both since they affect the thyroid.

When I was prescribed Armour for Hypothyroidism, I developed heart and blood pressure fluctuations every 15 minutes that eventually hospitalized me. My physician decided that Armour was too hard to regulate and prescribed Levothyroxine instead. She retired soon after this. Within a year, I was diagnosed with psoriatic arthritis in my hands. I was prescribed immune suppressants and other heavy duty meds. I work in nursing facilities, so this was concerning as my exposure rate for everything was high. Eventually, the NP, not the Rheumatologist, agreed to test me for Hashimotos. My sister had been diagnosed, and I had repeatedly requested testing. I tested positive but was treated the same. I ran out of the levothyroxine near Christmas and decided to use up the left over Armour. The arthritis in my hands stopped hurting and stopped progressing within 2 weeks. I now take a compound prescribed through a functional medicine RNP under supervision of the physician at the group. It works, but has to be adjusted regularly. Both of my daughters have normal TSH and have been tested for and diagnosed with Hashimotos. Chronic fatigue, brain fog and painful feet were the symptoms we all experienced first. We all made the statement as we progressed with the disease that we felt like human slugs. This has become a generational war for us.

I have had hypothyroidism since 1991 and after having covid in 2020 it escalated to hashimotos and then Thyroid Eye Disease.... my thyroid meds have changed 15 or 20 times since 2020 and now I take two thyroid meds and get checked every 6 months... some of your symptoms will improve with some exercise and determination. Hang in there❣️

When I was prescribed Armour for Hypothyroidism, I developed heart and blood pressure fluctuations every 15 minutes that eventually hospitalized me. My physician decided that Armour was too hard to regulate and prescribed Levothyroxine instead. She retired soon after this. Within a year, I was diagnosed with psoriatic arthritis in my hands. I was prescribed immune suppressants and other heavy duty meds. I work in nursing facilities, so this was concerning as my exposure rate for everything was high. Eventually, the NP, not the Rheumatologist, agreed to test me for Hashimotos. My sister had been diagnosed, and I had repeatedly requested testing. I tested positive but was treated the same. I ran out of the levothyroxine near Christmas and decided to use up the left over Armour. The arthritis in my hands stopped hurting and stopped progressing within 2 weeks. I now take a compound prescribed through a functional medicine RNP under supervision of the physician at the group. It works, but has to be adjusted regularly. Both of my daughters have normal TSH and have been tested for and diagnosed with Hashimotos. Chronic fatigue, brain fog and painful feet were the symptoms we all experienced first. We all made the statement as we progressed with the disease that we felt like human slugs. This has become a generational war for us.

@suerte
I have Hashimoto’s and hypothyroidism. I had a large nodule on my right lobe and had it removed because it was suspicious (it ended up being benign but they did find a micro cancer).

Hashimoto’s is known to cause nodules. Did you have an ultrasound of your thyroid to check for nodules?

The way Hashimoto’s is diagnosed is not through TSH levels alone. It is diagnosed through TPO autoantibodies showing up in your bloodwork. Hypothyroidism is diagnosed through TSH (high) and T3/T4 levels.

I had “normal” TSH levels but did not feel normal. I did not feel well if my TSH went over 1.0 and the “normal” TSH range can go up to 5.0! When I had my lobectomy, my TSH started to go over 2, then 3 and then 4 before my levothyroxine was increased from 88 mcg to 100 mcg. I felt like a zombie and could not get out of bed because I was so weak and tired. What is “normal” for some is not normal for all. It is better to see historical TSH levels where you felt better and see what levels show when you started to feel lousy.

When I was prescribed Armour for Hypothyroidism, I developed heart and blood pressure fluctuations every 15 minutes that eventually hospitalized me. My physician decided that Armour was too hard to regulate and prescribed Levothyroxine instead. She retired soon after this. Within a year, I was diagnosed with psoriatic arthritis in my hands. I was prescribed immune suppressants and other heavy duty meds. I work in nursing facilities, so this was concerning as my exposure rate for everything was high. Eventually, the NP, not the Rheumatologist, agreed to test me for Hashimotos. My sister had been diagnosed, and I had repeatedly requested testing. I tested positive but was treated the same. I ran out of the levothyroxine near Christmas and decided to use up the left over Armour. The arthritis in my hands stopped hurting and stopped progressing within 2 weeks. I now take a compound prescribed through a functional medicine RNP under supervision of the physician at the group. It works, but has to be adjusted regularly. Both of my daughters have normal TSH and have been tested for and diagnosed with Hashimotos. Chronic fatigue, brain fog and painful feet were the symptoms we all experienced first. We all made the statement as we progressed with the disease that we felt like human slugs. This has become a generational war for us.

Hi! This sounds exactly like what I’ve been going through. I had a right hemithyroidectomy for a benign nodule a year ago and have been extremely sick since. I found out at the time of surgery I have Hashimotos, though I previously didnmt have symptoms. My TSH went above 8 post surgery. I went on levothyroxine for a few weeks and became very ill, then went off meds and my TSH naturally lowered over time. It’s now at 3.5 and my Hashimotos antibodies have interestingly also lowered, but I feel unwell constantly. I’m dizzy, have internal tremors, exhausted, vertigo, nausea, weak and achey. My year has been a right off with intense and terrifying symptoms with heart rate increasing out of nowhere, temp dysregulation among other things . I have been in EE 8 times, and seen multiple specialists due to so many symptoms. Did you experience any side effects from the levothyroxine? I feel that endocrinologists have no idea about treating symptoms and only defer to numbers. I have been told my symptoms are ‘unusual’ and that I am a complex and mysterious case. I feel like no doctor will be able to help me.

@fionalauren
I feel for you and know how you feel. Before surgery, I noticed difficulty swallowing and speaking which improved after surgery. Before surgery, my TSH was within normal range but after lobectomy, I started to feel like a zombie and could not get out of bed. I felt so sick and extremely exhausted. My TSH peaked about 4.5-5 and even though within the “normal” range, I felt anything but normal.

Do you know what your TSH level was when you felt better and before surgery? My TSH at or below 1.0 is my “normal.” I’m wondering if your negative reactions was not necessarily from levothyroxine and more due to the hypothyroidism post surgery. You may want to try levothyroxine again at lower dosage and gradually build up until your TSH lands within your “normal” range. They started me at 88 mcg after surgery and then increased to 100 mcg. What dosage did they prescribe for you after surgery?