I was diagnosed with Hashi's a little over 15 years ago, after several years of feeling extremely hypo and Family dr. not believing it. (Ran lots of t-7, t-4 t-3 level tests, but never antibodies until large nodule showed up).
I sometimes go up for a bit, not sure why, but I can tell it's happening. Heart palps, trouble sleeping, and I just cut back on my meds. I take 200mcg/day, so I usually drop to 150 for a few weeks and feel fine again. Then I work back up to my dose and all is well for at least 6 mos, sometimes 18mos.
Lately, I've been having odd symptoms, which is why I got onto this forum. A Little scared, as neck is a bit swollen and tender. When I swallow, it feels like I have a lump in my throat (like an emotionally-generated one?), for no reason. Not painful, just feels odd and cramped.
Also, lately, for about 4 months now, I've been having frequent periods, usually a 6 or 7 day period every 15-20 days. I'm turning 40 in March and I guess I just keep thinking, "must be menopause coming", but now the swollen neck as of yesterday.
One thing that stuck out to me in your letter is that you stop your meds when you get hyper-t. I've never done that and it sounds problematic. Is your doc telling you to do that? I've never stopped since I began synthetic thyroid hormones back in '91. Sometimes they go down, sometimes up, but I just physically fall apart if I go without them, even for a few days. (sleeping a lot, rapid weight gain, etc.) Once I went on vacation and forgot my thyroid, thought it was not a big deal, and went without for about 10 days. I gained 17 pounds and was sleeping 14 hours/day by the time I got home.
Anyway, I used to see a really terrific, brilliant endo in San Francisco (Dr.Blum, and her husband Dr. Pwell, a "thyroidologist"). But now live in Oregon and have less access to specialists. Thinking I may need to make the effort (3 hour drive to the city) and see the real deal. My family doc now thinks that having a tsh of 2 is okay, is "normal". But I know that my former SF doctor always said, "Our goal is to keep your tsh below 1"
I have been rolling up and down for a couple of years.
I say that just so you know you are not alone. I'm not going to go into details at this time other than to say I have also been on and off hormone replacement drugs depending on whether I am Hyper or Hypo.
I have been sitting in same roller coaster ride for last 2 years . But now i can tell with my symptoms where i am in Hyper or Hypo . Yes my doctor did stop my levoxyl when i turn to Hyper for a week so my TSH come back up . I am tired with this roller coaster ride .
I have had Hashimoto's for about 15 years as well and I noticed kind of a lump when swallowing - go see your doctor immediately! Everything I read about nodules on the thyroid suggested that with Hashimoto's they are common, I had mine tested and had a needle biopsy and it was atypical with dangerous cells. I just went in for a complete thyroidectomy. I was having some of the same symptoms you are describing. This isn't something you should mess around with. Get the best doctor and surgeon to talk with you and check it out. It is not your imagination that you have a lump when you swallow. I have had a goiter for over 10 years and this lump was noticed when I swallowed, so good luck!
Have had hasi for 5 years if not more & progressing up and down goiters fine needle aspirations hypo & hyer 125mg sinthroid no shrinkage of the thiriod or goiters thiriod is enlarging now putting pressure on my breathing. I decided that I'm off this ride from hell! No one has answers or a cure. I will have a total thiriod surgery June 6th 2013 if nothing is there nothing can grow bye bye fine needle bio's and 50$ co-pays to the endo & scans. I have a few friends who had cancer & they guarantee me that I will feel 100% better when I get this pos thiriod out. Don't believe these doctors assuming your health is great & fine based on numbers game. Listen to your body! Id rather **** out a watermelon on a daily basis than have this disease. This was a ride from hell Im getting off thank you! I hope that once this is out I can have a normal life with the occasional ups and down like everyone else not full blown mania or rosy sunglasses back and forth. So if I'm going to be on meds for the rest of my life I might as well take her out and not worry about cancer. Thats my advice but I wish I coul wait for medical advancement but sort of need to breathe without pressure.