Low TSH - Bumped from doctor to doctor

Posted by babbab @babbab, Dec 15, 2018

I had a total thyroidectomy in July 2013. I have been on both Armour and a combination of Liothyronine and Levothyroxine for the last 6 1/2 years. I have seen at least 6 doctors to help me regulate my medication. I have been pushed around from doctor to doctor. The problem is that no matter how low the medication dosage goes down, my TSH is always abnormal; no doctor wants to deal with me. I need some help.

@babbab I can feel your frustration. I went through that before getting my diagnosis of non-alcoholic cirrhosis.
You say you have been to many doctors, so I presume at least one is an endocrinologist. Are you close at all to a city with a major medical center? I think that may be your last resort. I hope you can finally find an answer to your thyroid problems.
JK

@contentandwell

@babbab I can feel your frustration. I went through that before getting my diagnosis of non-alcoholic cirrhosis.
You say you have been to many doctors, so I presume at least one is an endocrinologist. Are you close at all to a city with a major medical center? I think that may be your last resort. I hope you can finally find an answer to your thyroid problems.
JK

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All but one of the doctors were in the Minneapolis/St. Paul area. 4 were endocrinologists, 1 bio-identical hormone doctor and my long time family GP. I guess it's really 7 doctors I've seen, because I just saw a functional doctor – she use to be a family GP and now adds a holistic/alternative point of view to her practice. All the other doctors just threw up their hands and said they could not help me. This last one wants me to reduce my dosage from time to time to try to get my TSH numbers to come up. I've never been above

Hi @babbab and Welcome to Connect! As @contentandwell said your frustration is evident and totally understandable.

I wanted to connect you with fellow members @jmk1 @macierubida @kellyann who have experience with thyroidectomy's and may be able to help you figure out what your next step will be.

It looked like your response was cut off. I believe you were about to mention what you TSH numbers have been. Is that correct?

I had my thyroid removed in September 2018 due to a multinodular goiter. When my surgeon removed it, it was completely inflamed but the inflammation did not show up in bloodwork nor scans. I take Eltroxin 0,1 mg every day.

At my first six week check up my TSH basal was 1.22 mlU/l. Because I was so tired, I went up in dosage to 0,1 every other day and then a little bit more every other day.

At my second control my TSH basal was at 0.04 so my surgeon brought me back down to just the 0,1 mg Eltroxin every day.

At my third six week control it moved to 0.34. Today I had blood work done and it is back at 0.04 mlU/L (ft4 is 16.0 pmol/l and ft3 is 4.13 pmol/l).

Does anyone have any idea as to why it would go so low? I see my surgeon this Thursday.

Hi @crenhov you may have noticed that I moved your post to this existing discussion on low TSH so that you can connect with others who have experience with this and thyroidectomies. Simply click VIEW & REPLY in your email notification to be brought to your post.

That must be confusing as to have your TSH be so low. i want to introduce you to @jmk1 @macierubida @kellyann and @babbab as they have experience with thyroidectomies or a low TSH and may be able to offer you support.

Back to you @crenhov, has the low TSH caused any side effects besides tiredness? Please let us know how your appointment goes Thursday!

I struggle with this too.

Get yourself a pillbox, Monday thru Sunday, to track your pills. Track your meds that way, dont forget a dose.

Put a calendar entry on your own calendar, for a tsh test. Every 120 days, contact the dr and request a tsh check. Manage this yourself.

This has helped me.

@babs1234

I was diagnosed with Thyroid disorder at age 11. By age 14 I had a goiter and bulging eyes. I had my first surgery at 17 partial gland was removed. In year 2001 the remaining gland has been removed. My TSH numbers has been great with medication taken on a daily bases. In the past 4 months my TSH has went down to most recent .014, my T3 Free is high 4.8, my T4. Free is also high 2.33. I don't understand what's going on. What would be the next step for me to take.

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Hello @babs1234, welcome to Connect. Thank you for sharing your health symptoms and posting your question. As most members on Connect have no medical background or training we are not able to give advice but we can share from our personal health experience. There is another discussion on Connect that may be helpful for you to join in here:

> Groups > Diabetes/Endocrine System > Low TSH – Bumped from doctor to doctor
https://connect.mayoclinic.org/discussion/low-tsh-bumped-from-doctor-to-doctor/

I'm tagging our moderator @ethanmcconkey to see if we should move your post to the above discussion and connect you with fellow members @jmk1 @macierubida @kellyann who have experience with thyroidectomy's and may be able to help you figure out what your next step will be.

Have you discussed with your doctor what the next step might be?

I was diagnosed with Thyroid disorder at age 11. By age 14 I had a goiter and bulging eyes. I had my first surgery at 17 partial gland was removed. In year 2001 the remaining gland has been removed. My TSH numbers has been great with medication taken on a daily bases. In the past 4 months my TSH has went down to most recent .014, my T3 Free is high 4.8, my T4. Free is also high 2.33. I don't understand what's going on. What would be the next step for me to take.

Hi @babs1234 I want to join @johnbishop in welcoming you to Connect. You may have noticed I moved your post to this existing discussion on TSH numbers in order for you to meet others who have experienced something similar.

That must be very confusing. While we wait for other members to respond, have these low numbers affected how you feel physically?

@johnbishop

Hello @babs1234, welcome to Connect. Thank you for sharing your health symptoms and posting your question. As most members on Connect have no medical background or training we are not able to give advice but we can share from our personal health experience. There is another discussion on Connect that may be helpful for you to join in here:

> Groups > Diabetes/Endocrine System > Low TSH – Bumped from doctor to doctor
https://connect.mayoclinic.org/discussion/low-tsh-bumped-from-doctor-to-doctor/

I'm tagging our moderator @ethanmcconkey to see if we should move your post to the above discussion and connect you with fellow members @jmk1 @macierubida @kellyann who have experience with thyroidectomy's and may be able to help you figure out what your next step will be.

Have you discussed with your doctor what the next step might be?

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No. Ive had two surgeries. Im always tried no energy. I cant remember things and its effecting my job. Im in management.

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