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Current/Past Med. changes according to TSH levels with bad results

I have been diagnosed several years ago with Hashimoto's Disease/Hypothyriodism w/goiter.  My levels are checked every 3 months or so and levels fairly inconsistant for about a year on 137mcg. Currently I am on 137mcg. Synthroid daily.  My May TSH levels was 0.888 and dr. decreased my meds. to 125mcg.Synthroid and within a week my feet and legs was swelling, my skin so dry on my hands I couldn't stand to put them under water(almost splitting open), extreme brain fog especially in am, fatigued all day long, cold all the time, moody, no libido, severe headaches at times in one centralized area, body joint pains, almost feeling like having the flu, just plain ole don't feel good.  While on 137mcg. feel better and most symptoms disappear but not all.  Still tired, just not as bad, dry skin but better, headaches, constipated, off and on brain fog, still cold,moody off and on.  Talked with dr. and they was strictly going by my blood levels, told them I was going back on my 137mcg. and I'd let them know if I was getting better and I did. Not great but better. Oct. TSH levels was0.254 and they called to say they was high and wanted me to decrease my dosage again and I said whoa it's not as high as last time and the change was not good for me, nurse suppose to get back with me after talking to dr. that was days ago still no word. Been doing research myself and saw the Synthyriod and Cytomel site and the read the responses from patients feeling wonderful. Should I push forward to get my dr. to look into this?
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Avatar universal
Do you live in the US? Here is a website of recommended thyroid doctors by state.


Honestly, if I had your doc, I would be looking for another. I had to beg my last endo to bump my Synthroid because I have hypo symptoms, but she was afraid to lower my almighty TSH!!!

FT4/FT3 levels should be considered before TSH - along with your symptoms! If you feel like doo doo and the doc ignores you and just focuses on TSH, time for a new doc!

I found a new endo off the website I gave you who believes in the importance of treating the patient, not the TSH. He is going to push my frees until I feel better, even if that means adding Cytomel.

This is your body. This is your life. DEMAND wellness!

:) Tamra
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Avatar universal
Thanks Tamra. I don't go to the endo. anymore and have started with my internist. Now that he and I have a understanding that I don't want his PA treating me or reading my labs, we are learning together. He does keep a close watch on me and has treated many with just hypothyriodism, but I'm his first Hashimoto's Disease, with a goiter and hypothyriodism. He takes my symptoms very seriously. I had to have a cat scan last year because my headache was so severe after 3 days I couldn't sit up. Wasn't a migraine, but both of my pupils was dialated differrently and it scared him, thought my brain might be hemoraging, called hosp. for emergency cat scan. $900.00 later I told him if I wasn't oozing blood from my ears, nose, mouth, lets don't assume that I need a 900.00 test! Yeah, no insurance! I'm poor! With a 17 yr. old boy and a 6 year boy that is Pervasive Developemental Delay/NOS and doesn't talk. Who is the most most beautiful child I've laid my eyes on and I don't say that because he is mine!!!! PDD-NOS via Hashimoto's. Had him at 39 yrs. old and before I was diagnosed. Lost 3 babies before him and 1 after him.  After last miscarriage is when they found enlarged thyriod.
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649848 tn?1534633700
Hashimoto's is treated exactly the same as hypothyroidism, only sometimes makes the hypo harder to control.  

You need to ask your doctor to have your FT3 and FT4 levels checked.  My TSH runs consistently low (0.02), but we go more by the FT and symptoms.  TSH is relatively unimportant to me at this point.  

Depending on what your FT levels are, then you might need to boost up your synthroid OR look into adding cytomel, but since cytomel is a T3 med and is 4 times stronger than the T4 med, you will need to be very sure it's called for and then make sure you go for the lowest dosage that works for you.  

But - first things first - and first thing is to get those tests done.  
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