Hypothyroidism Support Group

I haven't had these mouth issues, but i have had all the others. I understand how you feel. I haven't been myself since I was diagnosed 7 years ago. I think my biggest problem has been i am tired all the time. I hope you find the answers you are looking for.

Like Mamaw4, I haven't had the mouth issues either. I have been diagnosed over 10 years ago so I'm not really sure what that could be. I would definitely get back to the doctor and if after your visit, you still are not feeling well, I would check around for another doctor/opinion.

Hi. I'm new too so I know what you are going through - as do a lot of other people from the sounds of it. The mouth problems that you described sound very similar to what I've had happen a few times. My mouth and tongue feel "swollen", almost as if I have a cold or sore throat and I get a lump in my throat that is irritating. It makes my speach "thick" and slow. I've noticed this happen when I am off my meds for a few days. It doesn't hurt, it's just irritating and I find myself clearing my throat a lot like I'm trying to get rid of something - but there is nothing there. Usually it goes away when I get back on my meds. It takes about 3 or 4 days but it does go. As far as tests, I don't know much about all of what is available yet. I know the T3 and T4 tests but other than that I have to wait till I go to the dr in November. I do know that I'm going to keep after them to find out exactly what is wrong with me and help me try to fix some of it! I'm tired of being tired all the time!!!

Thank you very much for everyones replies ... Pixy3, it was VERY reassuring to hear of someone else having the same mouth/tongue/speech problems ... I have also had a headache for the past 3-1/2 weeks ... anyone else get those? In any event thank you, again, everyone.

Boy, you sound like the queen of hypothyroid! I can tell you this much, I have been reading lots of thyroid books to try and solve my own problems, and the thick tongue thing was definitely in one of them...and I'm almost positive it was for hypothyroid....especially with the symptoms you have. It is not unusual at all to have "normal" numbers and yet have symptoms. The savvy doctors are smart enough to treat the symptoms and not stay totally true to numbers. Find one who does...you need to be on medication....forget the neurologist, he's not a thyroid guy....get an endocrinologist or an internist who knows a lot about thyroid. Don't be afraid to ask when you call around. Good luck!

Beckeroo

"Have had enlarged thyroid, off and on, for almost 7 years with varying degrees of symptoms: Low body temp; terrible periods (have now had a hysterectomy); extreme to moderate tiredness; weak muscles including mouth, tongue - which also feels thicker - (hence slower speech), arms legs; dry skin; brittle nails; lose hair at time when symptoms are worse than usual; eyes feel "tight" .. don't know how else to describe it"
EXACTLY! I had everyone of those symptoms! Have you had a CT scan of your thyroid? It is "normal" for patients with thyroid problems to experience the swelling, unswelling of the thyroid. THE EYE PROBLEM you describe! I started having that problem when I first noticed the "little" lump in my throat where the thyroid was. They did a CT scan, found I had nodules. They did a fine needle biopsy, found no cancer. Put me on some form of Synthroid (no doubt generic, with what I'm finding out now) and the "little" lump grew to 8cm! By the time they removed it five years later, this lump had grow down my collarbone and up to about 1/2 inch from my ear. My esophagus was in a C shape! I had seeked out several different doctors asking for help. One told me "well, if it bothers you, we can take it out, if it doesn't we can leave it in"! WHAT? By the time I found a doctor that was concerned enough to help me the surgeon says, "Why did they wait until this was SO BIG to want it removed?" Yeah, my question exactly! This caused other problems. The growth was so big that when my thyroid (I had previously had one side removed, so this removed the rest) was removed, my parathyroid glands were damaged which gave me a whole new set of problems. Please don't wait under seven years before finding a competent doctor that is willing to listen to you and give you some relief!

And by the way, all this time, I was being told that my levels were "normal"!

Thanks Beckeroo and Sam. I have a dr's appointment in December, so hopefully will get sent to an endocrinologist(?). Or should I go to an different specialist? I am in Ontario, so probably won't get into a specialist for a few months. Thanks again everyone.

I believe Endocrinologists normally handle thyroid problems, but that doesn't necessarily mean you'll get the help you need from one. Keep looking until you find the one who is right for you! And keep us posted, please!

I was diagnosed with Hashimoto's Thyroiditis when I was 25 (I'm 45 now). That is when the immune system attacks the thyroid like it is a foreign object and tries to kill it. I was losing hair, gaining wait, my skin was thick dry and scaly, my tongue was (and still is) enlarged, I had low body temp (from immune system fighting thyroid like it was an infection.), I also had a high white cell count in my urine which no dr. could ever account for. They would always tell my mother I must have an infection because I had a high white cell count but they couldn't find any infection. Duh. She asked our GP to check me for thyroid when I was 13 and he said, "she's just fat". My sister got diagnosed before me and I got my dr. to test me and he sent me straight to an endocrinologist.
My advice to you is have the dr. you are seeing do every thyroid test he can run and refer you to an endocrinologist. Even if the TSH and stuff come back normal, it could be something else to do with the endocrine system. It could also be the pituitary, although from what you describe it sounds like classic hypothyroid.
Bee