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EndocrineWeb Community Advice

From Graves to Addison's to papillary thyroid cancer

From: servingHim - 5 years 39 weeks ago

I was diagnosed with Graves Disease 20 years ago, then it went into remission a year later. Then I had an adrenal crisis and was diagnosed with Addison's Disease 15 years ago. This past year I has a thyroid goiter biopsied, and it was papillary cancer. After my total thyroidectomy I am having trouble with TSH level that is getting more and more hypo by the month. Last labs TSH was 10.9. My doctor wants to increase my Synthroid at a very slow rate, partly because of my Addison's Disease. My vitamin d is 23, has been on the decline. I am sluggish, cold,... hypothyroid symptoms. My DEHA level is extremely low, too. Is there anyone who has had a similar experience?

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Finally, someone else has pretty much the exact same problems/symptoms as I do...nice to know I'm not crazy! I had a total thyroidectomy almost 2 years ago, and it has been a rollercoaster since. My aunt, mother and myself all were diagnosed with papillary carcinoma within 3 months of each other, but I had Hashimoto thyroiditis as well. They started me on a lower dose of Levoxyl, but had to increase it several times, and my endocrinologist said when a patient is on birth control they tend to need a higher dosage. Well, I stopped my birth control for only about two months and I ended up on the lowest dose yet of my Levoxyl. Now that I am back on it, my TSH keeps changing...very high levels meaning my medicine needs to be raised yet again, and I am tested every month. I am positively frozen all of the time, hair is falling out, can't go to the bathroom, palpitations and extremely tired. I even have to see a dermatologist now and I never had to before. I know they say it's harder for some people to get their medicine in check, but this is rediculous. Funny thing is within a week of changing my med I feel better, but by the end of the month I revert right back to where I was. Hopefully everything will get straightened out sooner than later. I wish you the best and good luck with your meds :)

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I had a total thyroidectomy 5 months ago. I was diagnosed with a multi nodular goitre 10 years ago but as my thyroid function was still good and 2 biopsies over the years were negative, there was no need to perform surgery. Until this year. After my surgery, I was diagnosed with paplilary carcinoma. I am going crazy. I to have blood tests every 5 weeks and my medication has had to be increased each time I see my endocrinologist. I was 63 kilos before my operation and am now 68. I am very fit and exercise every day, but all this has gone down the toilet. I am always tired, irritable and depressed due to fear and the negative changes I have seen my body go through. Everything I hear and read tells me everything I don't want to hear. I do not like what I am going through. I am finding that I am more accepting of the diagnosis than I am of the changes I am experiencing. At the moment I see no light at the end of the tunnel.

lizzie.

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Please don't think that way; there is always light at the end of the tunnel, it just may be very dim. It will only get better from here on out, although it is extremely painstaking to get the medicine right. I'm having a heck of a time trying to find the right dosage, but I know once we get it right everything should come together. I just can't tolerate the chronic fatigue I feel; it seems there aren't enough hours in the day to sleep! My aunt had to have 2 bouts of radiation for her papillary carcinoma, and although she wasn't thrilled with it she's elated she did it. I hope all goes well for you and for anyone going through this, because I can honestly say it is very disheartening to be able to do pretty much nothing to help yourself until this medicine is just right. God Bless

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Thankyou for your kind words Hummingbird ! I think part of the problem also lies with the fact that we are still required to function somewhat normally on a day to day basis and that people cannot really grasp what or how we are feeling. I look completely normal and in fact people say I look well but no one could begin to understand how I feel physically. It's refreshing to be able to converse with people who understand as they are in the same boat. Thanks again.

lizzie.

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