A Few Questions...: I have two questions I need... - Thyroid UK

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A Few Questions...

I have two questions I need help with:

1- After your hypothyroidism was diagnosed and you were put on levothyroxine or T3 -- how long was it before you started to lose the weight you had gained? Did you have to work to get it off or did it just start falling off?

2- Do any of you get swollen, fluid filled legs? Today is such a bad day with that. Both legs, ankles and feet are holding water. Did that get better once you were medicated? Do you have to take a diuretic even after being put on thyroxine? What causes that??

Thanks so much for the info!

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If you're on enough of the right meds you shouldn't really need a diuretic unless you have other health issues. What are you taking at the moment?

I had terrible fluid retention on levo alone and a bit of t3 sorted it right out. Also sorted out constipation, which I can't help but think must be related as that fluid needs to go somewhere.

As an interim measure I found compression/flight socks v helpful. You can also try a leg massage if you have a helpful friend :-) though I only know for sure that this works on common and garden variety fluid retention. You will lie on your back and they will lace their hands together and treat your leg as if it was a big tube of toothpaste and they are squeezing it from the bottom up. They'll start at the toes (one leg at a time) and gently move their laced hands in a fluid motion up toward your heart, squeezing the leg gently (you'll need some cream or oil for this to work smoothly). It's brilliant and feels great but you'll have to have a go to know how it works for you.

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I'm not onanything -- yet. I posted about my situation in Need Your Expert Advice thread. I've had lots of symptoms and had two Drs run thyroid tests and say they're "normal". They keep attributing my symptoms to a month-long period of taking prednisone back in March thru April. When I look at the tests, I see low and dead low yet in-range levels of Free T4 (1.0 reference range 0.9 to 1.8) and TSH (0.458 reference range 0.4 to 4.2?). I had to write up my symptoms and send whatever blood work I had in order to get an appt with an endochronologist, but I finally have one for 12/15. I have since found out that my father's sister and her daughter both had their thyroids removed due to its overgrowth. I think there's also a history of thyroid issues with my mother's sister as well, but she is deceased and I have reached out to my cousin's for more info...

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I think this could be central hypothyroidism or some sort of pituitary issue but I don't know how your results would be affected by the prednisone. Endo should be able to shed some light I should think. Are you going to one of the endos on the TUK list?

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No, I'm actually in the U.S., New York City specifically. I'm praying that this specialist will actually try to get my results into the optimal ranges, even though my blood work is not "abnormal" or out of the reference ranges. I'm tired of being tired... And fat. With swollen legs, ankles and feet. That's definitely something I've never had before, and my legs just ACHE.

I'm wondering if the prednisone impacted my adrenal glands, but my pulmonologist (the Dr that put me on the pred) says whatever effect it had, should have ended 6 months ago...

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Ok, well in NYC you may have some more options and not just the dreaded GMC-approved @*!!0cks we put up with here.

If you get no joy from a conventional endo you might want to look at functional medicine. I know of someone in NJ if you want to message me. I also have a list of NJ docs who prescribe ldn and thus might be more flexible for treatment options (ie will treat symptoms and not just test results). I can't recommend any personally but if you need a plan b let me know.

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Yes, I am reading up on it since reading your post. I will be asking for full thyroid panel (TSH, Free T4, Free T3, Reverse T3, antibodies, and maybe even cortisol test). After that, I guess we'll see where I stand. Right now I'm taking one Free T4 test taken on 11/1, and looking at another TSH test from June... maybe it's wrong. I'm hoping this is not central or tertiary hypothyroid although it does sound identical. It's so scary!

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I'm actually in the U.S., specifically NYC. I didn't realize this group was only for U.K. when I joined...

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It absolutely isn't only for UK citizens or residents. We have members in many, many countries with the USA very well represented.

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Oh, good to know! Your members have been so knowledgeable and helpful -- and nice! Glad I'm not pushing myself in where I don't belong. 😊

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Have had a look at your last post. Is there any way you can see a different gp? There is no reason why you should be expected to endure abusive and toxic treatment from a professional. And when you find someone better and are safely out of that relationship I'd leave some colourful online reviews too.

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I asked my pulmonologist for a referral for a different GP (he was also shocked at the way I was treated) and he gave me a woman Dr - but she was not covered by my insurance plan. I think I may ask the Endo and see who she says would be good... I would love the info on NJ Dr, just in case of need for a Plan B. Thanks! I'll be messaging you! 😊

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