Hashimoto's Disease

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?

Hi, thanks for this. I was put onto the lowest levothyroxine dose of 25mcg post surgery. my TSH at it’s highest was around 8, but it normalised over time without meds. I don’t know what it was pre surgery but will look into that. either way, I am now at TSH of 3.5 and am not functioning. I also have Hashimotos which may explain many of the symptoms as inflammation can cause havoc on the body. The levothyroxine was definitely not right for me and sent me to ER with feeling like I was having a heart attack - I have read of others having similar experience.I am very medicine sensitive. Unsure if I should try NP Thyroid which is a natural desiccated hormone combo T3 + T4, which endocrinologists do not prescribe. I have been advised by functional medicine doctors a compound T3 + T4 would be a better route but at this stage after a year of such terrifying symptoms and no seeming clear answer I do not trust any doctors.

@fionalauren
I hear you about having a hard time trusting doctors. I have had some really bad experiences.

I do believe they can go even lower on the levothyroxine level. There are 13 mcg capsules. https://www.goodrx.com/levothyroxine/dosage

One thing to keep in mind is that your heart may have been really struggling after surgery. There are times it can cause symptoms of hyperthyroidism and make heart race then switch to hypothyroidism. Your symptoms that made you go to the ER and feeling ill in the early stages of taking levothyroxine may not necessarily be only due to the medication. It took me months to stabilize on the right levothyroxine dosage. Your body may be very sensitive to the change in thyroid hormone levels (increases/drops) so stabilizing is important. I think you may want to try the levothyroxine again at a lower dose (13 mcg) and try to get your TSH below 2.0. You should also check your T3 and T4 levels in the past, in addition to TSH, and compare to what they are now. See if you have lab results for thyroid that go back to a time before you started to not feel well.
1. https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-how-the-thyroid-affects-the-heart/
2. https://www.health.harvard.edu/heart-health/thyroid-hormone-how-it-affects-your-heart
3. https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.118.036859
4. https://www.thyroid.org/patient-thyroid-information/ct-for-patients/november-2024/vol-17-issue-11-p-12-13/
5. https://thyroidresearchjournal.biomedcentral.com/articles/10.1186/s13044-025-00233-y
6. https://thesurgicalclinics.com/understanding-the-impact-of-thyroid-hormones-on-heart-health-what-patients-need-to-know/

thank you so much for taking the time to reply, and include those links.
It has now been a year post surgery and I am still very unwell, even with thyroid levels in 'normal' range. I just compared bloods from now to right before surgery. My TSH level then was actually low, which indicates hyperthyrodism I believe. From memory I was told I was subclinical hypo, as a hyper stage usually precedes hypo:
TSH 0.41 L
T4 15.7
T3 3.8.
I have an appointment today with an online thyroid MD and as had been suggested previously by functional medicine doctors I may try start on Armor Thyroid, so a combination T3 + T4. I don't believe the numbers are really indicative of how one feels but I know I feel awful and non stop dizzy. I hear you on the heart symptoms but they have been coming and going now for the past year. The levothyroxine definately exacerbated them to the point it felt like impending heart attack, so I am not willing to try that medication again. Surprised though you mention it can be taken at a lower dose, as I was told 25mcg was the lowest.

@fionalauren
I hear you about having a hard time trusting doctors. I have had some really bad experiences.

I do believe they can go even lower on the levothyroxine level. There are 13 mcg capsules. https://www.goodrx.com/levothyroxine/dosage

One thing to keep in mind is that your heart may have been really struggling after surgery. There are times it can cause symptoms of hyperthyroidism and make heart race then switch to hypothyroidism. Your symptoms that made you go to the ER and feeling ill in the early stages of taking levothyroxine may not necessarily be only due to the medication. It took me months to stabilize on the right levothyroxine dosage. Your body may be very sensitive to the change in thyroid hormone levels (increases/drops) so stabilizing is important. I think you may want to try the levothyroxine again at a lower dose (13 mcg) and try to get your TSH below 2.0. You should also check your T3 and T4 levels in the past, in addition to TSH, and compare to what they are now. See if you have lab results for thyroid that go back to a time before you started to not feel well.
1. https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-how-the-thyroid-affects-the-heart/
2. https://www.health.harvard.edu/heart-health/thyroid-hormone-how-it-affects-your-heart
3. https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.118.036859
4. https://www.thyroid.org/patient-thyroid-information/ct-for-patients/november-2024/vol-17-issue-11-p-12-13/
5. https://thyroidresearchjournal.biomedcentral.com/articles/10.1186/s13044-025-00233-y
6. https://thesurgicalclinics.com/understanding-the-impact-of-thyroid-hormones-on-heart-health-what-patients-need-to-know/

So I now have 3 different opinions from 3 different people on my symptoms.
Two are doctors, one is a thyroid expert.
Functional MD says my thyroid labs are all normal/great even though on the higher end, and that all my symptoms are from low iron. My iron is the best it's been for years though, so this doesn't make sense to me. My ferritin is 28, (it was 19 before surgery and never had symptoms like I do now) he wants it bw 50-100. He advised not to go on thyroid meds, that it will disrupt or suppress my natural thyroid function which is good atm.
Another online thyroid MD wants me to get my TSH to 1.5-2 and take Armor Thyroid, lowest 15mg dose. Third Thyroid expert says all symptoms are Hashimotos and wants me to go on LDN for antibodies. I had been on LDN last year briefly. But my antibodies at present are 389 which has greatly reduced from months prior where they were over 900, so this also makes no sense why I would feel worse when my iron is better and my antibodies are better.
None of them make sense. I realise many people say even if their thyroid labs are normal they don't feel great and feel better on thyroid meds. I don't know if I should try the Armor or not now. Why do none of the doctor seem to know how to deal with thyroid. Argh.