Extremely high TSH, normal T4, No thyroid???

Posted by Capitalasper @capitalasper, Jun 6, 2022

Hi, I had my thyroid removed in 2016, including parathyroid because had Graves which would not stay in remission, and the meds wouldn't stay consistent for more than a month at a time.

My levothyroxine dose was the same for many years

Late in december 2018 I was diagnosed with Superior mesenteric artery syndrome and rushed into surgery early 2019 for a DDJ bypass.

For two years I felt perfectly fine, even better than i recall in childhood.

In Febuary 2021 I went to the ER for sudden severe stabbing abdominal pain and vomiting up bile. This was never explained or resolved. At this time, I began searching for potential answers everywhere, and have been in decline since then.

The only off shore leads I've gotten were a bullseye rash early in 2020 and later testing positive for band 39, and a very very faint positive for limited scleroderma. I was diagnosed with SIBO but 3 antibiotics have not seemed to eradicate it.

In April of 2021, I had a rerun of my thyroid hormones, and the TSH was just barely elevated at 6.44. My levothyroxine was raised in response.

I found the pain I was in the ER for was likely from the SIBO and severely adjusted my diet, removing all fruits, artificial sugars, and limiting all carbs to less than 50 per day, completely cutting out all starches like breads, crackers, potatoes, and rice, as well as products that contain them. This left me with less than 500 calories per day for the most part.

Today, after three days of severe heart palpitations, inflammation, and nausea with no appetite left to even try to eat much less drink anything, I went to a cardio urgent care. The tests they ran all came back normal, except for thyroid, which they only ran as a last ditch effort.

This time the result was 28.0, and I believe that is only because (at least based on the design of the chart) it doesnt seem to... measure any higher than that. T4 was normal at 1.17, no other values were taken.

I'm kind of searching for advice here, my endocrinologist no longer practices in this state, and the office didnt assign me anybody else (but if I'm honest, I dont think she would've been much help, when it was off the last time she was very adamant that I shouldnt even have to change the dose and I'm probably taking it with antacids that I had been prescribed (but never took))

I highly doubt I can possibly get in to a new endo in less than two months, is this even a bad reading? I cannot find any anecdotal information of people without a thyroid experiencing normal T4 and high TSH. If this is happening because of the abdominal surgery, I dont think increasing it infinitely is going to do any good, I'll wind up being unable to take it because of the lactose (intolerance ;_;)
Is there any non-oral forms of this medicine I can take??
(Also am I the first person on record to be extremely hypothyritic yet also severely underweight?? I think it is incredibly rude of this condition to not at the very least give me back some of the body fat the SMA took from me 😐)

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Hi, Why was your dose of Levothyroxine increased if your TSH was high at 6.44. That makes no sense as increasing the dose would only make you hyper. No wonder you are losing body fat. A reading of 28.0 is needing help with this immediately. I wish some
doctor's would listen to patients. Your concerns are genuine. Please keep us updated with your progress. I think all thyroid values should be kept up on every month for you starting now. I care and wish you the best. your friend, Doreen


I am sure thyroid med comes in sublingual. Dissolves under your tongue. I feel your dose needs to be checked 30 days after you start. My friend had her thyroid removed. She has lost 70 pounds. Her dose is 88mcg every other day and 100mcg on the day in between. Check into the under the tongue. That way you can keep it out of your stomach. I have had it that way before. The brand Synthroid works better for me than the generic Levothyroxine. It must be more accurate in the mcgs.. It used to be a $5.00 co-pay. Now it is $100 for a 90 day supply. I had to go with the generic. Be sure you take it on an empty stomach 1 hours before you have breakfast. No broccoli or coffee and a few other foods interfere with it too.


i had my thyroid removed in 2020. they found a microcarcinoma in the right lobe of the thyroid once they got the thyroid out. Dr claimed no cancer had spread outside of the thyroid. But 3 years later, my right side of my clavicle is much bigger then the left side. They did MRI and CT Scan and even an Xray and shows nothing other then degeneration. My thyroid levels have been good, to where they didn't have to change my meds for 2 years now. Now all of a sudden I had my blood work done three days ago as my endo dr checks every 6 months. Concerns are if I have no thyroid and my levels came back with TSH @ 7.380 and my T4 came back as 0.9 What is going on and should I be worried? Endo dr must have my results by now and did not get back to me on what is going on and if my dosage is too high or too low. Should I be worried about anything? Thanks


@sharibaby17 you sound a bit like my husband. Thyroid cancer was detected by biopsy and his thyroid was removed (2008). After that he has been on Synthroid or generic Levothyroxine. He has also had labs and scans to monitor. As you probably already know the thyroid stimulating hormone (TSH) is inversely related to your thyroid levels. Since you (and my husband) don’t have a thyroid, this comes from your medication. When the TSH is too high or low it usually means the thyroid medication dose needs to be adjusted. My husband has experienced this many times. The correct medication dose sometimes requires quite a bit of tinkering. I don’t think you need to worry just yet, but you could contact your endocrinologist to find out if s/he has had a chance to review your labs and if any changes in dose are needed. Has your endocrinologist gotten back to you?


My thyroid was destroyed with radiation because of my Graves’ disease. Now, 12 years later I have been having issues for the last year and a half with TSH/ free t4 levels. My TSH is high and free t4 is normal, free t3 is on the low end. After much investigation the endo finally tested the Graves autoantibodies again and they are super high. He states is is very unusual to have active Graves’ disease once the thyroid has been destroyed (or in your case removed) but here we are 🤷🏻‍♀️ I have also seemed to have developed an intolerance to Synthroid (can’t tolerate the side effects) so can’t take higher doses. I have just switched to natural desiccated thyroid starting today to see if I can tolerate it better. You may want to get tested for Graves’ disease autoantibodies again.

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