Hi Everyone! I'm new on this board, and newly diagnosed as hypothyroid (TSH at 11.76). Main challenges are extreme fatigue and dizziness (and being cold, but that isn't nearly as hard to deal with). I also have had panic attacks for the last 5 years. I'm having trouble taking the medication -- tried tiny (1/8 tablet of 25mcg Armour then Synthroid) bits and had the hyper reaction problem. Now on specially made 6mcg T4, time release. Not sure it's doing anything. Perhaps too low. My body is very sensitive to meds. Wondering if anyone out there has info/advice for the dizziness especially. It is kind of lightheadness with a sensitivity to motion (like when I walk). I've been dealing with this for 6 months and now, finally diagnosed, I am looking forward to getting my life back. I had to stop working it was so bad and I've been stuck in the house. Any thoughts would be greatly appreciated, things that have worked for you I could try and so forth. Thank you so much. I send everyone much healing.
Your extreme sensitivity to the thyroid meds suggests one of two possibilities to me:
- you are actually HYPERthyroid. In rare cases this could happen with an elevated tSH if the TSH is being prodused inappropriately, like say by a tumor or something. What are your free T4 and free T3 levels? Do they confirm hypothyroidism? Or are they elevated?
- there seem to be some rare people out there who do poorly with any T4 but do well on T3 only. That might be something to try next. Obviously a tiny dose to start.
Also - people with adrenal failure do not tolerate replacement thyroid hormone until their adrenal failure is addressed - should be checked too.
Thank you for your reply. My doctor said that the hypothyroidism was caused by the constant stress that the anxiety/panic attacks cause(d), so I would say that my adrenals are "fatgued" or trying to recover, but she seemed to think that the meds would help anyway --?
The results were:
TSH; 11.76 mIU/L
T4, Free; 8.0 ug/dL (normal range listed: 4.5-12.0)
T3, Uptake; 29.2 percent (normal range listed 27.8-40.7)
T4, Free, calculated; 2.34 units (normal range listed 1.53-3.85)
In case that is of help. I'm just confused.
Also, since starting to take the medication, I seem to have developed other symptoms, like sore throat, ear pain (both checked out and nothing was found), and nausea. It's strange. It's like it's making it worse.
WOW. you explained the dizzy sensation just as i do - "motion sensitivity". worse when i'm moving around than when i'm sitting. mine comes and goes.
you and i also share the medication intolerance. i started off on the "usual" starting dose and had terrible tachycardia and anxiety. dropped it and started back on at 6.25mcg, and increased by 6.25mcg every 4 weeks (after seeing bloodwork levels).
with me i just had to ride it out and start slowly though i knew it was too low a dose to qualify as 'maintenance' for my hypothyroidism (hashimoto's). you may find yourself in the same boat. its been a long 6 months for me as well! i'm still having symptoms but not as badly and i hope to be feeling better soon.
my advice is to hang in there and research this disease.
Oh wow! Thank you!!!!! It is so helpful to know I am not alone! My doctor kept telling me I might have Meniere's disease because of the dizziness but I researched it and that causes a "spinning" dizziness, not at all what I have, and I kept sticking to my hunch that it is the thyroid despite everyone doubting me -- went to an ENT specialist and she gave me OK to wait a couple of months before doing all the tests to rule it out (can't take any more tests right now,especially ones that make you dizzy on purpose) -- it is so nice to know there is someone else out there who has felt this. And the medication intolerance too (I got the full blown heart racing, speedy thing too with the tiny amount) -- I am not sure I possess your patience -- I am going to try to slowly go up to 12mcg if my doctor gives me the OK over the next two weeks. Did you ever find anything that helped with the dizziness? I haven't, except that it gets worse when I am cold (the back of my head gets "tight" and, oddly, it helps if I add heat to it via a hair dryer!). I am SO glad you are feeling better and thank you for giving me hope.
when i complained about this motion sensitivity my doc asked me if i was pregnant, when i said no, he suggested i take dramamine. he said its probably an inner ear problem not related to my hypothyroidism. i beg to differ. i know its because i'm not at optimum levels yet and i just have to be patient. i never had this problem before - i've always been the crazy lady who goes on all the thrill rides and never gets dizzy. and i'm NOT taking dramamine! thats all i need - to be sleepy on top of already being sleepy! jeepers. i'd sleep all day long! yeah, and like you said its not the spinning kind of dizzy. when i try to explain it, its like how you'd feel on a boat kind of. swaying motion sort of.
i'm betting you're right that yours is from being hypothyroid too. doesnt hurt to get ENT tested though if you can. i'm going to complain to my primary care doc tomorrow just for the heck of it and see what she says.
my other concern was that the cause might be a side effect from the levothyroxine but so far everyone says that cant be it. i havent found anything helps with it except to move more slowly and/or move less, and just plain try to ignore it, which is very difficult. i have suffered very tight muscles -trapezoids i think - the upper back between the shoulders along the back of the neck. heat and massage in this area seems to be of comfort. though i'm not sure it helps decrease the motion sensitivity, its a comforting thing for my body and mind. you mentioned the back of your head gets tight and direct heat helps. interesting similarity, isnt it?
believe me, i'm impatient by nature. my patience was mostly supported by my extreme fear of re-experiencing the tachycardia events. i went to the ER twice i was so scared.
we're very alike with these sypmtoms. i wonder - do you also get twitches in your muscles ocassionally? do you have the 'tight throat' or 'lump in throat' sensation too?
I did not see a Free T3 test result... Am i missing something or is you doctor ignorant. I suspect the later. I f you body is not converting much at all you TSh will remain high. You need the Free T3 test. you might need ONLY T3.. Synthroid is only T4...Armour is T3 and T4. Cytomel is only T3. Also, I think you need an intracellular magnesium test. It must be intracellular, not just the serum test.. which which will only tell you if you're near death.
that dizziness sounds like what I get when I'm adjusting to a higher dose - I get it mostly when I'm walking around and it's kind of like seeing things in a detached way and just feel a bit spacey?
Just thought I'd share a similar type of occurence even though I'm not on meds yet.
This past winter for a few months or so I would also get the dizziness/motion at different times, didn't realize at that time what was going on ... however, after most of the dizziness calmed down for those few months, I then started having the severe ringing in my ears and still have now ... and what's crazy is it's mostly in my left ear in which I losted my hearing in after having a hysterectomy 2 yrs ago, crazy! ... the "ringing" is soooo loud. (Now, after researching the thyroid I'm finding out that tinnitus is one of the many symptoms and what's incredible is in one of the thyroid books I was looking through in the bookstore yesterday actually had hearing loss mentioned ... as I've been looking for a good few yrs why I lost my hearing in my left ear, possibly it's my thyroid but then again not sure).
Anyway, just thought I'd share a few things I'd do to try and calm down the dizziness/motion and hopefully it might help you and others as well.
As soon as I felt dizzy, I'd close my eyes immediately and keep them closed for a few seconds to a few minutes then open them up very very slowly. Also, in which I still do now, when watching TV or anything that has severe movement from amusement parks, helicopters flying through the mountains, and you feel like you're moving way up above ... and I mean anything else that has motion and there's alot on TV and outside that does ... what I do is immediately turn away and sometimes close my eyes, unless you're driving and all you can do is at least try and focus on another subject. Also, in whatever you do, from moving your head in any direction, from getting up and down from a sitting position and lying down position and other types of positions such as doing gardening, etc. ... only move your head very slowly ... and any feeling of dizziness/motion remember to close your eyes immediately if you can. I hope this helps as it has helped me and still does at least 75-95% of the time. Bye for now and hope you start to feel better soon, Marty
P.S. There's many reasons why this happens, from vertigo, meds, inner ear, thyroid, etc. but mainly it will calm down in time.
Oh my gosh --- I could have written this myself ..... you sound exactly like me !!! Sorry you are suffering as well.
I have tried, over the past year - twice to take first Synthroid, then Armour - the same results. I have Hashi's hypo.
I have a tachycardia to begin with - and the meds just sent me over the edge. It began 5 years ago, slwoly, ---- and just remains. I take a small dose of beta blocker in the morning - maybe this would be of help to you ???
In all of the research I have been doing, anxiety/panic is much more common in hypothyroid than most doctor's realize. Lack of T4 results in the brain having a much decreased amount of GABA, an anti-anxiety hormone, in the brain ...... which results in chronic anxiety, which can lead to panic.
If you can get your hands on a book by Dr. Ridha Arem - "The Thyrtoid Solution" - this is a bible for thyroid sufferers. He describes, in length, what hypo can do to a person not only phisically, but mentally ...... and all of the anxiety panic is wonderfully addressed. I bought my copy at Barnes and Noble I think ....... This book has taught me so much. It is NOT our fault !!!
I have to keep in mind that the symptoms of hypo and hyper can overlap .... and that each of us is different - we are NOT textbooks !!!
The motion sensitivity that you describe I also could have written ... many times I am holding onto walls, furniture, etc .... I am spending so much time lying back in the recliner .... literally feeling as if I am dying at times.
I see my internist again tomorrow, and this time will insist on a Free T4 and a Free t3 - NOT just a TSH ..... I can't live like this anymore !!!!
How are your mornings ????? I feel just awful - shakey hands, palpitations, dizzy up the wazoo, muscles in my shoulders and neck so tight that I am getting God awful headaches every darn day. It has now reached as far as my jaw - giving me awful TMJ/jaw type pain ....... all muscular. NEVER had this before.
I know myself - and I KNOW that this is NOT just "a little anxiety". The thyroid can mess up every cell in our bodies. For each of us, symptoms can be different.
I could cry reading your post !!! Really !!! We could almost be twins.
Maybe an increase in anti-anxiety meds, like Xanax, and a small dose of beta blocker would help to get you through this awful rough spell, even if you would have to be on them for quite some time. Quality of life is so important ???
Please keep in touch ..... I can't believe this post
I will post under this thread tomorrow after I see my internist ...... thanks so much for posting your question ..... it has helped me !!!!
Wow. There are quite a few of us in the same boat! I already feel hyper to begin with-hot alll the time, insomnia,etc. My labs show hypo with a higher tsh and a lower t4. I too have no tolerance for thyroid meds. I once worked up to 50 mcgs. but had all the hyper symptoms, along with a new problem with my throat-it was getting "stiff" like when I swallowed. It was very irritating. I am currently not on any meds.
I had a doctor(one of those wholistic md's) do the saliva cortisol tests on me. My 8 a.m. cortisol showed low so he gave me cortisol 5 mg. I then went to an endo and asked to have the stimulation test to test if I really did have weak adrenals. Everything came out that I did NOT have weak adrenals by any means, and in fact my stimulated cortisol levels went in the high range.
I too stay home all the time as I can not walk through stores or anything without getting lightheaded and need to sit. It's extremely frustrating. Well, a couple of days ago I felt sooo low and weak, I took a 2.5 mg cortef(I always start low dose of anything!). An hour later I was hotter than my normal being hot, and it felt like I had taken a sleeping pill! I thought it would wake my mind and body up. I was wrong. The next morning I woke up really hot and heart racing to 120 with strong palps. and b/p at 180/?? I had my son take me to the emergency room( first time ever!), but a small town hospital. The doctor kept apologizing about not being able to get results for a few days. I will get my tsh, t4 and cortisol today or tomorrow.
From my reaction to the cortef, I feel like I may have to pursue the adrenal thing further, but check into cushing's disease-too much cortisol. I was amazed at how I got hotter, and never before understood why I was always hot.That may have been a clue! I did have a 24-hour urine done last week to check for cortisol and a pheochromocytoma metabolite work-up- won't know those results til later this week.
So after all this, I wanted to say to you that it's possible we may have more than just thyroid going on. I was wondering if elevated cortisol levels could make taking thyroid unbearable. I hope I can find out if there is a connection for me.
Karen ..... I am homebound as well ...... my big outings are to the doctor - trying to find answers. Grocery stores, etc are too much - the wooziness, lightheadedness ....... it's like sensory overload. I just have to be home and rest ....... how pathetic ???
The anxiety is almost crippling .... and the dizziness is awful. But it isn't normal anxiety, if that makes any sense ???? Seems to come from deep inside ........ yuck.
The tachycardia and palps are driving me insame ...... and so far my internist just shrugs and looks at me ....... I don't think he has ever had a thyroid patient be so "difficult" !!
I am NOT trying to be difficult - but I know my body .......... and I KNOW there is something going on.
I am going to ask for a 24 hour urine for cortosol as well ...... can't hurt - maybe it will answer some more questions.
Hugs to you ...... know you are not alone !!! This is God awful, isn't it ???
Nancy- definitely get tested for the 24 hour UFC(urinary free cortisol). Do you have any symptoms of cushing's-overweight, a belly, redfaced, higher b/p, abdominal stretch marks, hair on face, insomnia? I am about 40 lbs. overweight without stretch marks right now, but I do have the facial hair thing going on! And all new-onset higher b/p, tachycardia. You get to the point where you want a lab to just go wild and jump out screaming "here's the problem!". It gets so depressing when your labs come back "normal".
Also, if you have high b/p, and get hot and sweaty, have them check your 24 hour urine for epinephrine, norepinephrine, metanephrine, normetanephrine, and VMA. This could also signal an adrenal or pituitary issue.
Hi Karen ...... NO I have LOST weight. In the past 4 years I have lost 40 pounds ..... that's why it all just doesn't make sense. And I am cold - my hands are freezing all the time ..... except for at night - then I have night seats. ????/ Weird.
I have Hashi's - that I know for sure, TPO antibodies were 350 ......... I did have some metabolic testing done a year ago ---- catecholomines were high ---- my doctor said it was from stress.
This is driving me crazy - just crazy ----- I will insist on some other tests tomorrow - including a test for Grave's antibodies as well. It is rare - BUT some people can have the antibodies for both Hashi's and Grave's.
24 hour urine for free cortisol ..... I am writing this down.
I don't understand, though, Karen ..... if your cortisol was high - why did the doctor give you cortef ???? It seems it would make you worse ???
I show a lot of symptoms for adrenal fatigue .... but getting a doctor to believe in it is another thing
So sorry you are suffering as well ....... but I think we should try to keep this thread going a bit ??? Seems we are definately NOT alone ????????
As I mentioned, one dr. did the saliva and said I was low in the a.m. The other doctor did the blood stimulation test that is what they do to test for addison's, and my levels were very normal, and then went high. So, I didn't know what to believe, except I felt low and weak, and thought, well maybe I am having weak adrenals. I don't think so after that reaction! You need to have your catecholamines retested again. If they are only slightly elevated that could be explained away as stress. If they are really high, it could be something that needs looking into.
I'm at a loss. For years I have told my endo I feel Hyperthyroid, but my numbers were always euthroid, and now hypo.