Hashimoto's Toxicosis and going hypo and hyper

[terri thyroid]

This is kind of a survey/question to those of you diagnosed hypothyroid Hashimotos but who feel or actually are cycling into a hyper (not hypo) state. Do you seem to have symptoms of hyper like red in the face, hi b.p., shakiness, depression, hot all the time not hot flashes, hot tempered, double vision or poor vision etc etc but yet you feel run down, tired, fuzzy mentally, slow gastro processes so you go to the doctor and he/she says you are right in target range for tsh below 3.0 or thereabouts and great free t4 free t3 levels and all else looks good so maybe they raise your thyroid med dose thinking you're still a little hypo (not hyper) or have you lower dose in case you are actually hyper and for a short while you feel better or feel worse right away so now you don't know if you're up or down ? Yes, that is a run on sentence but hopefully I'm clear - here is my theory - maybe you have gone so hyper your body is shutting down or slowing down to protect itself or it's just breaking  down altogether - Has anyone had this experience and if so what do you do about it or what does your doctor do or say to help you? And if our thyroid gland worked normally would pituitary and other supporting systems output consistently same amounts ? I know this is a good question for Dr. Lupo as he actually believes there is a phenomena as Hashitoxicosis unlike my past 3 endos. I'm curious what you folks think about this and what your experiences have been.

[terri thyroid]

these stories are so familiar - bravo to those doctors who believe you - I saw 3 different endos in 2 different states - none of which believed you could fluctuate up & down and still be Hashimotos - 1 even overdosed me for months on Synthroid - I had double vision, blurred vision, "sore eyes" and was told "you're old get glasses" I had vision correction surgery 6 years prior and had perfect 20/20 vision until this quack - I was fine even w/ hashi prior to this staying on a lower dose - this jerk wanted me less than 2 tsh - I was bedridden for days, sick in many ways and lost my great vision in a matter of months - anyhow - after 6 years of egotistical doctors I now have a wonderful internist who is very knowledgable about all forms of thyroid disease and attends conferences frequently about these issues -  I stay on the low side to avoid going hyper and am doing everything I can to keep my metabolism up by exercise & strict diet of healthy foods - my heart goes out to those folks w/ more serious thyroid problems than mine - maybe more doctors will wake up and realize Hashimotos is much more than sluggish thyroid - it's a roller coaster ride and it's not fun - hugs T.

[Karlyward]

It's great to hear your comments.  Thanks AR-10 for your explanation on Hasitoxicosis.  Terri, I liked your last sentence as it's almost exactly what I said to a friend last week - it is about time that Drs reaslied Hashimotos is more than just a sluggish thyroid - it's a roller coaster ride and it's not fun at all.  The Blood test results seem so innacurate.  Interesting about the loss of vision, as mine has deteriated over the past years and I'm still young.  Does anyone else suffer bad allergies & asthma?  I have terrible probs with my skin, breathing and even food tollerence at times.  Just trying to get an idea if some of these things can be related.  Also, I did some reading about the possibility of Adrenal gland function being connected with Thyroid function where switching occurs between hyper & hypo.  Has anyone else heard of this?    Nice to know that I'm not alone with the switching between hyper & hypo.  I think I'm going to have to try your method Terri of keeping my synthetic dose on the lower side and working on increasing exercise & better diet too.  I'm not quite ready for removal of the gland just yet.

[wagbird]

I have had Hashimoto's for about 10 years. Initially, in my early 20's a doc discovered a lump on my thyroid and general swelling which they biopsyed but could not get a good sample of. A partial thyroidectomy was done to rule out cancer and the lump turned out to be benign. (follicular adonema). I was told that the remaining piece of thyroid would continue to function well and to periodically check my levels. At that time, I did not know that I had Hashimoto's. No one told me. And really, as if any twenty-something is going to go for blood work regularly! If it 'aint broke........Fast forward to age 31 when, after my second son was born I began to fall asleep standing up! I went to get my thyroid checked and was definately experiencing hypo symptoms. I started taking a low dose of Synthroid. I am now 36 and have been experiencing a few hyper symptoms lately as well as continued hypo and a goiter and another lump has developed which is also benign. I have been advised to discontinue the Synthroid and will see an endo in a month after getting my TSH and free T3 checked. I am wondering if anyone has had dizziness especially immediately upon eating? I also get teeth chattering, muscle soreness, a heavy feeling in the eyes and the weirdest one.......my left eyelid is sometimes noticeably droopy!!! I also notice that my lymph nodes in my neck swell and feel sore sometimes. I also developed celiac disease last year. Am I alone here? Does anyone share these symptoms? I suspect Hashitoxicosis and I hope that the endo will listen. I am tempted to get the rest of the thyroid removed to eliminate the swings      

[GoingcrazyCrystal]

I had my right eyelid start to be droopy, and I was dizzy every time I ate, my muscles were sore, I was tensing up more and my neck felt sore and like a hand was around it. This and many other weird neurological symptoms came about a couple months before and leading up to my weird hyper episode that lead me to check into the ER.  

[KS34]

Hi Everyone,
I am new to these kind of "posts", but find them extremely helpful and comforting.  I have Hashimotos--diagnosed Jul 2007, about 7 months after the birth of my son (first child.)  I felt horrible, despite my tsh only being 9.5 (I have heard that some people's tsh is really up there), but my antibody level was really high.  Was started on synthroid 50 mcg in middle Jul 2007.  Tsh has been "fine" over the last 9 months.  Despite my internist telling me to get it checked 3 months after starting, and if it was fine then, I wouldn't have to check it but once a year!!!  Fortunately for me, I am a nurse myself (however, I have found, that when it is you as the patient, all of the nursing mentality goes right out the window), so I persisted and had it checked 2 more times.   After only 3 months of synthroid, my tsh was down to 2.8 (end of Sep. 2007), and then I had it checked a second time about two months later (Nov. 2007) b/c I was feeling crappy again--at that time it was 2.3.  I was told to stay on the same dose and that it was "perfect."  Well, back to feeling better for a while, at least.  In Feb of 2008 I had my routine gyne appointment and asked again to check my tsh--my periods were heavier anyway, and I just wanted to keep tabs on it.  This time it was 1.8 (which was about 7 1/2 months on meds.)  Which brings me to the present....I have again been feeling really crappy the last three weeks or so (April 2008).  Back to the brain fog, slow and sluggish feeling, and lots of weakness and fatigue.  This time, I am having some muscle twitching or something--not constant--but noticable enough.  I actually was freaked b/c it reminded me of when I was pregnant and the baby would kick--it's like a quick little jerk or something--calves, abdomen (sometimes).  It comes and goes---some days I don't have it at all.  I did have the weakness and sluggish feeling when I was first diagnosed, but didn't have this twitchy thing.  Of course, if you google muscle twitching, the first things that pop up are ALS and MS--which totally freaked me out!  But, I definitely have all the other "thyroid" symptoms-which, strangely enough, is comforting that I am quite sure it is related to my thyroid prob.  I have read all your posts and sounds like you can swing from hypo to hyper....great, what fun!!  I haven't yet had the pleasure of experiencing "Hyper", so I am wondering if you have any insight.  Anyone else have this muscle twitching thing ever?  I read in a lot of places that it may have to do with low calcium levels/parathyroid involvement??  As far as I know, my T3 and T4 were both normal.  Also, one of the posts I read was someone who had post-partum thyroiditis...do you a have Hashimoto's?  Because my diagnosis seemed to coincide with my pregnancy and delivery...I was wondering if eventually things would just go back to normal (i.s., meaning I would be able to go off of meds.)  I know that pregancy can trigger the problem, though.  Along with this intermittent muscle twitching, I am really achy, constipated, foggy, tired, and I am quite sure I am having some heart palps...not very often, but I have noticed a few little flutters here and there, and also having a strange feeling in my left eye (like it is swollen and something is in it) and find that my vision is a little blurry after reading a lot or doing a lot on the computer.  Pulse and BP are OK (so far--checking at home.)  Sorry post was so long...new at this and have lots of questions, but feel so much better knowing that other people are experiencing the same things.  It's scary.  The thing I find so strange, and perhaps very specific to thyroid (??), is that the symptoms seem to sort of move through in waves(there is the nurse brain in me!)  It's like one or two days of really bad brain fog, then a day or two of the muscular discomfort, and a day of constipation, and a few days of visual disturbance in some form...it is enough to make you think you are crazy!!!  I feel like I can't catch a break here!   I am going to call doc tomorrow and get my levels checked--I read some of you saying though that the sxs seem to lag behind the levels, so not sure what to expect.  I feel like I am having sxs of both hypo and hyper at the same time, but my gut tells me that I may be leaning torward hyper.  Also, does anyone feel that they have a certain "range" that they feel best at??   As my tsh has probably never been below like 4.0, roughly, then perhaps a tsh of 1.8 is too low for ME (although it is within normal limits)????  UUUGGGHHHHH!!!!  Thanks for reading and any input would be appreciated!!  Hope you are all feeling well......
KS

[GoingcrazyCrystal]

I had a lot of neurological symptoms that lead up to my hyper episode, they even checked me for MS, they  were baffled. No one knows everything, but we know our bodies and what is normal to us. So just keep pushing, I was choking on water for months, went through 5 doctors before believed me and decided to do an ultrasound and found a giant nodule. So just keep pushing and get second and third opinions. Also educate yourself.

[AR-10]

Everyone has a certain set point, with a range of 0.75+/-. So you have a 1.5 spread with the magic number in the middle.

Each person has a slightly different set point, and it may change with age.

It could be that you need a higher TSH, but your symptoms say otherwise. Could it be that you are getting some synptoms from the Synthroid?

If you have high antibodies, you should be getting checked every three months, period.

[KS34]

Thanks.  I guess I will wait and see,what the levels are.  I also was thinking about effects of the actual medication itself.  Anyone have probs with Synthroid versus other meds???