Hi All, i’m a total mess! I had total thyroidectomy August 2017 for multinodular nodules. Biopsy showed papillary carcinoma, so I had total thyroidectomy August 2017. It has been a struggle since surgery. The first two weeks after surgery, I felt the best in four years. The surgeon put me on Synthroid 125mcg and that was good. I had my follow up with endocrinologist and he adjusted my dose from 125mcg to 112 mcg because he claimed my tsh was too low at 0.02 (0.32-4.0) he didn’t do ft3 nor ft4. Since the decrease, I have not felt well again. After bumping into this site, I became smarter and went back to see him, he checked ft3 & ft4, results were very low ft3 2.6,(2.6-5.8) ft4 18 (9-19). I added rt3 to the requisition: the result was at the highest number ( can’t remember the exact number. He insisted rt3 was not important and that my results were normal. I argued with him for a long time and insisted that i was not converting. He tried to scare me regarding osteoporosis and low tsh, I would have none of his ignorance. He finally agreed to give me 5mcg cytomel along with the 112 of synthroid, that helped a little, but I was still feeling awful. I’m presently taking 100mcg Synthroid, 12.5 Cytomel. The fatigue have improved, I have swollen knees and ankles, shoulder and hip pain, rotating pains in thighs, severe pain in my heels, lost half my hair and eyebrows, weak legs and gained another 11pounds, most of which is around my abdomen. Over the past few days, I started having lower back pain as well. My diet is healthy, I have cut out dairy, added sugars, gluten.( I have chronic Lyme disease). He told me I have sub- clinical hyperthyroidism and wants to cut my Synthroid to 88mcg + 12.5 cytomel. Is there such thing as subclinical hyperthyroidism? I’m so frustrated and confused. Below are the latest blood work. ( February 11, 2019.)
Tsh:<0.01 (0.32-4.0). Ft3: 4.0 (2.6-5.8). Ft4:13 (9-19) Ferritin: 146 (5-272). RBC Folate 2417 (>1186). I take multivitamins with 400mcg folic acid. (I’m no longer taking this)
I would appreciate some advice/direction from all the knowledgeable members.
Thanks. Rosebud1955.
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Rosebud1955
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Most patients do well with a normal TSH and a high normal fT4 which brings fT3 to around mid-interval. This is the closest you can get to a healthy person when someone is treated with levothyroxine. However, this assumes the TSH is reflecting the fT3 and fT4 levels. In your case you have Tsh:<0.01 (0.32-4.0). Ft3: 4.0 (2.6-5.8). Ft4:13 (9-19) . i.e your fT3 and fT4 are both a little below average so your TSH should be above average, but it is not. Reverse T3 is of no use, we just don't understand enough about it to make sense of the numbers.
TSH can become abnormally low if the patient has a sustained period of high thyroid hormone levels. Perhaps this happened to you when you had the thyroid nodules? A recent study found that it can take six months (if ever) for the TSH to recover after high hormone levels, see Tsh:<0.01 (0.32-4.0). Ft3: 4.0 (2.6-5.8). Ft4:13 (9-19) .
The relevance of the above is that T4 to T3 conversion is stimulated by TSH, so if your TSH is abnormally low you will get reduced conversion, especially in tissues regulated by type-2 deiodinase such as the brain.
From a treatment point of view I would reduce your levothyroxine to 50 mcg and increase the Cytomel to 25 mcg, 12.5 at breakfast and bedtime. See how you go on this. This would equate to 125 mcg levothyroxine (Cytomel is 3x as potent as levothyroxine - see ncbi.nlm.nih.gov/pmc/articl... ).
VERY IMPORTANT. The biopsy showed papillarly carcinoma. I've not got much knowledge of thyroid cancer but I do know that in some cases it is important to suppress the TSH for a period of time to prevent any chance of the cancer coming back. Have you received advice on this? You should have been assessed as to whether you need TSH suppression. If this has not been discussed I suggest you raise it with the endocrinologist or surgeon and see what they say. If you are not impressed or convinced I suggest you seek out a second opinion from an expert. There are some patient support groups for people who have survived thyroid cancer.
Thanks for replying. I will follow up on your suggestions. The surgeon did tell me that my tsh needs to be suppressed to 1 or lower, he did not give a specific number. I will decrease the Synthroid to 75mcg to start and do a further increase in two weeks. I will push for blood work in six weeks. I value the suggestions from everyone on this forum, what a privilege to be able to tap into all this knowledge and support.
That sounds fine, as I understand it each cancer requires a different degree of TSH suppression. So in your case it looks like keeping TSH anywhere below 1.0 is fine. I've no expertise in this area so these are just general comments.
As endos go, this one is exceptionally useless! How can you be hyper when you don't even have a thyroid? It's not just that subclinical hyper (which is meaningless) doesn't exist, it's that your thyroid doesn't exist! Fire him and find someone with a brain!
Thanks for your input. You’re correct, I definitely will not be visiting this guy again. His scare tactics regarding osteoporosis did not scare me. When I pointed out that my ft3 & ft4 were not even optimal, he fumbled a bit and changed the topic. What an injustice to all the thyroid victims!!!!
Thanks to everyone for all the support offered to all of us sufferers.
Thanks for replying. Yes, I agree that I need an increase. Jimh111 suggested that I lower the Synthroid to 50mcg and increase the Cytomel to 25mcg in divided doses. What’s your take on that. Please see her reply.
I would appreciate your response as well. Not that I don’t trust other suggestions, but I like to see how others think as well.
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