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babbab
@babbab

Posts: 2
Joined: Dec 16, 2018

Low TSH - Bumped from doctor to doctor

Posted by @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.

REPLY

@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

Jump to this post

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.

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