Hashimoto's Disease

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.

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.

@fionalauren
If I was in your situation, I would want to improve thyroid function and bring down your TSH (your pituitary is working hard to make thyroid hormone). I would also want to improve your iron since oxygen is not being optimally carried throughout your body which causes widespread problems over time.

@fionalauren
Do you have heavy menstrual cycles and are you vegetarian or vegan? This can make it hard to bring up your iron levels. I had to have a d&c to remove 3 polyps causing extremely heavy periods and I had an IUD put in. I was iron deficient like you at the same time I was dealing with Hashimoto’s and hypothyroidism. They never treated my Hashimoto’s with any medication. Now I want to go check my TPO to see if I should be treated. 😉

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❣️

I developed the bulging eyes you can get with TEDs. I elected to have the surgery vs that 500,000-dollar biologic that works 80% of the time. The surgery has a success rate of 95% and Dr. Soparker , here in Houston, who is a PhD, MD, plastic surgeon invented the procedure.
Now the eye orbs have been pulled back into each space, and I look normal again. Medicare paid for the surgeries.