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.

[Aj.noon-]

Well, before my Dr caught my high TSH, and reading what symptoms were what.  I think I experienced hyper symptoms with a high TSH, when I was on Levo, I accually had normal TSH but felt yucky, rundown, lazy.  Now I have been off Levo for 6 weeks and I think I feel more hyper again. I have energy, quite the appetite. But I also feel normal, like before all this thyroid nonsence.  I have to rest soon, not sure what it will say.
The endo said I probably had postpartum thyroidis. (shrugg) Don't know I am just hoping my results come back normal and I can forget about all of it.

[terri thyroid]

thanks for your response - yeah I was hoping for post partum thyroiditis but mine was permanent - you may be a lucky one - I'll keep my fingers crossed for ya :) T.

[AR-10]

I have Hashimoto's toxicosis and have cycled up and down a lot. A whole lot. Forever. Well, not forever, but it seems like forever.

The only significant indicator I have when I first turn Hyper is heart symptoms. Not racing heart. Pressure on the heart. A dull ache. Skipped beats and once in a while a little rev up for two seconds. A feeling that the heart is way past tired, and ready to just stop. Normal blood pressure and heart rate.

The depression is worse, and eventually I get shakey, am hungry a lot and need to sleep a lot.

I am tired and can't stand heat or cold whether I'm Hyper or Hypo. When I'm Hypo, my muscles hurt.

I haven't tried playing with my meds. I'm sure it would help if one could anticipate one's hormone levels a day ahead, but I can't. The symptoms lag behind the actual levels. I'm sure I'm nearly euthroid right at the moment, but my heart still feels like I'm very Hyper.

Hope I understood the question.
I'm not thinking too fast today.

[terri thyroid]

thanks for your quick post - yes you answered my questions exactly and yes the symptoms do seem to lag behind the levels - I see internist soon and am requesting an mri of my thyroid as not even the endos have looked at it so I just want to cover all bases - I am also going to talk to her about taking my Levoxyl on as needed basis like I have been doing past week -( after last hyper episode even being only on 1/2 dose thought I would have a heart attack )- this as needed seems to be working so we'll do bloodwork again and probably in a couple more months and see if this works (this is the one method I havent tried in 6 years) so its worth a shot - I still believe there is a way to work with our body and avoid destroying it - I'm not giving up and hope you won't either - thanks T.

[Karlyward]

I was diagnosed with Hashimotos about 10 years a go, but I seem to go through phases of hypo where I put on weight, I'm tired, I lose my memory, I'm become unmotivated & depressed, all I want to do is sleep and I feel the cold.  Other times I am hyper and I can't stop eating yet I don't put on weight and lose it easily, my muscles ache, I can't sit down to a meal or watch TV without getting up and I have very little sleep etc.  I'm go,go,go and I'm full of ideas, enthusiasm and motivation.  So contrasting - like two different people and yet my T3, T4 and TSH levels appear to be the same regardless of what mode I am in.  I have just gone from Hyper back to Hypo and given my blood test results are unchanged, my Drs are just saying, 'things have caught up with you, that's why you are tired' but it's happened so many times before that I'm not convinced that it's unrelated to my thyroid condition.  Do you know of any way to manage which mode one is in apart from looking at blood test results?  My Drs seem unaware of this ability to 'switch' between hyper & hypo  Could I have Hashitoxicosis?  Any ideas on how it is diagnosed, managed & treated please?

[AR-10]

Hashitoxicosis is diagnosed by demonstrating a presence of anti-thyroid antibodies indicating Hashimoto's, along with a history of hypothyroidism that cannot be regulated along with frequent or prolonged bouts of Hyperthyroidism such that Thyroid replacement hormones must be discontinued by times.

One method of treatment, that seems to fail consistantly, is to shut the thyroid down with Methimazole or Tapazol, and use replacement hormones like Synthroid or Armour to treat the drug induced Hypothyroid state.

It can be very hard to diagnose. I was first diagnosed with a "slow thyroid" and put on Synthroid even though my chief complaints at the time all pointed toward Hyperthyroidism. My bloodwork said Hypo, so that's what I was treated for. I was tested every three months for a year and a half, and my bloodwork showed a need to up my meds every so often.

Then I went in quite ill one time and my bloodwork showed I was extremely Hyperthyroid. Suddenly I had Grave's disease instead. After a lot of frequent bloodwork and a lot of horsing around with several doctors it was discovered that my levels were swinging up and down every week, and what my tests showed just depended on what day I walked into the lab.

That "one time" was sixteen months ago and it has been hell ever since trying to treat it. After having lived with it for over three years trying to get regulated, I have decided the only way to treat it is surgery and RAI.

My hope is that it will be controlled by Synthroid after the treatments, but I am starting to wonder if it will ever really settle down. I can't see how one could bounce up and down weekly if one does not have a thyroid, but the more I read the more complicated it seems.

[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      

[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

[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???

[terri thyroid]

Hi KS -

I sent you a long post then it disappeared because I haven't been on here in so long my password expired - I had the twitching too and thought Parkinsons, ALS, etc. I was on too high a dose synthetic t4 - I also had constipation, huge swollen belly, no appetite but no full feeling when eating, slowed digestion, heartburn, - had this everytime I would be on any synthetic unless I stayed on too low dose - also had horrible edema, hands, feet, moonface, swollen skin above the eyes, I could go on forever- sluggish brain, bad memory, constant hair fallout, acne, migraines, the list goes on ad nauseum - I would have to stay on low dose or go on & off completely to get rid of side effects then start over - I also added Cytomel per doc (even he thinks this is a joke) and no matter how small the dose I was hyper, chest pain etc) so back to square one - also tried natural but only at doses 50mcg up to 100mcg - felt great but it also was too potent - anyway cut to the chase - I went back on the Armour in November but only @ 30mcg - have been great ever since - lost 5 lbs., made Honor Society @ school, (couldn't remember what day it was prior to this) running faster & longer, doing better @ the gym and my family sees a huge difference in my mood and me too - no side effects - just have to take 1/2 my 30mcg after my morning run on empty stomach - then other 1/2 just before lunch as it's potent but in tiny doses not even noticeable other than you feel great - also I drink a little coffee so I add way more decaf to the mix - anyway I hear your concerns about hashimotos - doctors think this is same as sluggish thyroid older women get - not the same - hashimotos toxicosis is going hyper/hypo - you will be more hyper @ night and more hypo daytime and t4 just gives you side effects and no help - see my previous posts about eyesight & t4 - anyway - I haven't been on here in awhile because I've been too busy & felt great - see what your doctor says about trying low dose of Armour to start - this is not for thyca patients - but I love it and it's only 10$ with or w/o insurance - yeah! Many others on here criticize natural but don't knock it unless you've tried it - I met a woman from UK who has been on it since the 60s and her american doc put her on synthetic instead and she went immediately downhill and asked for her Armour (natural) back - let me know what happens :) Terri

[Rite760]

I'm a bit confused, I've been told I've got Hashimotos disease is that the same as Hashimotos toxicosis or different. Only I'm swinging between hyper and hypo, but am mostly hypo in my bloods, even though my symptoms are more in line with hyper?! But my endo told me this week that I will definately end up hypo for good like the rest of my family in the next few months. But after reading what everyone has said here, it sounds like you can stay swinging for years? That's why I'm wondering if there's a difference between the two conditions?

[KS34]

Thanks, Terri, for your quick reply.  It is so nice to know that there are other people out there going through this ****!!  
So, to re-cap, you are saying that you had a lot of these really annoying symptoms when you were on too high dosed synthetic T4 (hope I got that right.) Does that translate to Synthroid (or is it any type of synthetic replacement?)  Again, new at this, and trying to get the "lingo" down, etc.  So, it may mean that my tsh may be too low--or at least too low for me, right (and therefore, the synthroid dose is too strong or high--right)?  I won't hold you to anything, don;t worry, but just want to make sure I am following you b/c that is what I am thinking....that now (I've been on synthroid 50 mcg for about 10 months) maybe I am going the other way...HYPER!!!   I am getting blood work today, so will see what happens.  Glad to hear that you also had that muscle twitching thing...good piece of mind, and also glad to hear you are feeling better.  Thanks so much!!!  
p.s.  What is ARMOUR??  IS it an RX or over the counter??

[AR-10]

Good to hear that you are doing so well, Terri.
:-)

[terri thyroid]

Hi KS -

Here's what I've learned - Tsh is acronym for thyroid stimulating hormone - if your tsh is high number it means your pituitary gland is putting out alot more tsh to make up for your low t4 & t3 - so you want a lower tsh - I don't recall the exact numbers on the range but it's less than 1.0 to 4.5 or 5.0 - mine stays higher near 10 because if I go withing that "official" range - I am way too hyper (but that doesn't mean I have energy) so I stay higher tsh - but keep my t3 & t4 in range - also I've tried lots of synthetic like Synthroid, Levoxyl, generic synthetic, etc. but Armour is freeze dried pig thyroid - the problem some people have with it is that the t3 to t4 ration in a pig is higher than in a human so for some people they don't like it but I don't convert t4 to t3 so for me it's perfect - everyone is different - hashimoto's disease (named for dr. who discovered it) is when the body sees thyroid as invader and body attacks it and slowly destroys it over time until it doesn't work - hashi toxicosis is when your body is going hypo/hyper instead of just going more & more hyper - some people just take their thyroid pill & have no problem - others like us have all kinds of side effects - Armour is prescription but can obtain it through some naturopathic doctors (not actual md's) Endocrinologists & many gp's go ballistic if you utter the words Armour - it's been used since the late 1800s as rx for thyroiditis - that muscle twitching scared me to death - it got so bad when I was on 100mcg Levoxyl that I would lay on my arm to keep it from jumping around at night when I was attempting to sleep - my doctor (Endo) told me I imagined it or drank too much coffee ) make sure your doctor listens to you when you tell your symptoms - and ALWAYS keep copies of your blood test results and write your brand of thyroid med & dosage on every test and how you feel at that time - this has helped me keep track of what worked and what didn't - if your doctor won't help you - find a new one - good luck - let me know what you find out - research all you can about the tests your doctor has requested and others he hasn't - my doctor checked my Vit D levels & they were very low even though I eat healthy, work out & take vitamins - not unusual w/ thyroid patients to have low D - also a good doc will check antibody levels & many other levels - talk to him/her about this - the thyroid websites have good info about this too - Terri

[terri thyroid]

Oh, I forgot to answer something else - I've been euthyroid all my life - like lesser symptoms of thyroid - but it got worse w/ my first son & then horrible w/ 2nd child (which is not unusual to get way worse w/ a 2nd birth) mine was not post partum - I will have this for life - anyway, no one ever diagnosed this problem - I self diagnosed @ age 42 and then had to argue to get doctor to test it and one even told me I was borderline and she refused to give me meds - I really hope someday research is done on this disease and the symptoms we suffer from so that thyroid patients are treated with the kindness & understanding other chronically ill people receive. T.

[hoopie65]

As a teenager I had a goiter. PCP put me on synthroid. Took it about a year and then I don't remember why but I didn't take it anymore. Always felt depressed. Was treated for depression for years. After the birth of my 6 year old I found a doctor who said I was hypo at tsh of 5 and put my on 75mcg of synthroid. Have taken it for the last six years.

Started having cervical radiculopathy, raynauds, depression, fatigue, muscle pain, joint pain. Went through all the tests and nothing was wrong with my spine or anything else. I do have carpal tunnel.

Just tested and now my tsh is at 1.67 so the doctor tells me I am fine and to keep taking the meds. I was also diagnosed with Hashimotos disease.

Here are my symptoms:

chest pain
numbness, tingling, pain in arms and legs
stomach pain after eating
either no appetite or ravenous
weight loss
diarrhea or constipation
start periods 3-5 days earlier than normal and are heavy with cramps
headache
chills
feel like I can't regulate body temp (either too hot or too cold)
nausea at times
fatigue
depressed
exhausted
crying and irritable
anxiety
dry lips and skin
brittle hair
eyes hurt
forgetfulness
exhausted by any activity

I think that my body is dumping the thyroid hormone all at once and then I get really sick. I have good moments. I can have a couple of days where I feel pretty good (not totally myself) but better than when I am so sick

I take 75 mcg of synthroid per day and 30 mg of adderall (adderrall) for ADHD per day. Probably don't have ADHD. I think it is due to the thyroid inbalance. I

I have trouble writing and remembering words. At times my tongue feels like it has been scalded by hot coffee or a hot drink.

The doctor seems to think I am crazy and "difficult" Keeps trying to put me on antideppressants but I know I don't have clinical depression.

Anyone have any ideas?

God bless us all that have to live this private hell every day. It seems like no one understands how I can be fine one minute and feel like I am dying the next. I want to be healthy and productive!!!!

[terri thyroid]

I saw your post and had to respond - I may get crucified by others on post but please ask your pcp if you can lower dose to 50 and see how you feel - try that a few months & see - I switched back to natural (Armour) but I tried lower dose of synthetic (like Synthroid, Levoxyl etc) and felt better @ lower dose - of course my test levels didn't look great - but I felt alot lot lot better - even 50mcg Levoxyl was too much for me & I had all the symptoms you mentioned plus many more - I finally went back to natural but @ a very low dose & now the best I've felt every - the test results say I should feel bad but feel great - go figure - a good doctor will listen to how you feel - not what the tests say - talk to him/her & find a new doc if they don't agree to help you find a dose and/or brand of thyroid med that helps you - good luck - you deserve to feel great - :) Terri

[carolT]

Believe me I understand everything you say. I have been to so many endocrinologists who either think I am making everything up or say they are just too busy to deal with my problems.  I believe that I had thyroid disease as a teen but it was not diagnosed until age 21 when I had Graves crisis. After a year of PTU they diagnosed me with Hashimotos. I have degree in nursing but my health is so bad I cannot work. After 32 years with Hashimotos you would think I could be well but it doesn't work like that. The thyroid has a mind of its own and yo-yo's up and down. You may have a normal TSH but still feel high or low.  8 years ago I began having terrible muscle and tendon spasms that no medicine helps. 3 years ago I lost all balance and now cannot walk a straight line and fall constantly. 2 years ago blackouts started - they come on with an aura of excessive yawning or horrible chills and then I am literally unconscious for up to two hours. After this I have to will my arms and legs to move and have slurred speech. 1 year ago I began to have severe abdominal pain and spasms after eating. Six months ago I began to have terrible pain in my arms and upper chest - tests show that my muscles are spontaneously tearing. In addition, I have such terrible headaches, joint and muscle pain I cannot sleep, My left foot is completely numb but feels like I am stepping on cold things. I have seen numerous neurologists who tell me that I have no sensory nerve function or reflexes but there is no cause for it. Could be thyroid related. I have taken synthroid which puts me on a roller coaster of TSH values (highest 81), then Armour  thyroid which did the same thing, now I am taking a compounded med of T3 (not Cytomel) dose 60mcg twice a day.  I really don't think anything helps. My husband of 28 years just thinks I am mean but the truth is I am so depressed, exhausted and in so much pain I just can't handle much. Anyone have suggestions?  By the way I also have low VitD and B12 levels (but B12 shots lower the level), and and a high sed rate which indicates inflammation. My real worry is that I will develop thyroiditis and vasculitis and have another stroke (first one in 1990). I am a tough old bird (52) and I just keep going. I also had breast cancer at age 38 that the doctors said was due to my thyroid. GREAT!!!   One last thing don't just accept the diagnosis of carpal tunnel because I read an article about how hypothyroidism can cause thumb and hand pain and I truly experienced that when I was really low!  Thanks for letting me vent, no one seems to care that I feel the way I do.

[terri thyroid]

you are an amazing woman ! What has your doctor said about RAI or removal of thyroid - it sounds like your life would only be better without it as it sounds like it so bad it's damaging the rest of your body - hashimotos does cause muscle spasms & carpal tunnel - I read that in several different sources - you sound like you go into hypothyroid coma - I can't believe a research hospital isn't looking into your case - is this a possibility in your city/town? The losing balance/spasms etc are things I only experience when I on too high a dose of synthetic & my TSH is less than 10 - go figure ! It sounds like we have similar side effects but from different brands & different amounts - I can't for the life of me figure out why the medical community isn't doing something - at least acknowledge that these patients are not crazy - I hate egotistical doctors who refuse to listen to their patients - my very best to you & I hope you will prevail in your search to find the solution.....T.

[KM1]

I am so glad I found this thread. I was diagnosed w/Hashimotos just this year. I have been so confused b/c my TSH showed hyper, then normal, then hypo, and hyper again since Feb. This has all been since last June. The first endo wanted me to take meds for the hypo, but I did not and it swung hyper on its own. Now my new endo wants me to take tapazole, but I am not sure. I do not really have too many symptoms and I do not want the meds to take me in the opposite direction and make me have symptoms. This is a very frustrating thing and it is hard to get straight answers from the doctors. They just want to put me on meds, but not explain it. So I have been coming here for answers. I thought Hashimotos was supposed to be hypo, so this helps me realize this can be the normal course of things.

[carolT]

Check out Hashimoto's encephalopathy. I just wrote a whole lot on medical community thinking I ws writing Dr. Lupo. I must be very loopy today. I am having bad time right now. Doctors say it is lupus, don't know if I agree.

[KS34]

Hi Everyone,

To hoopie65:  It is so amazing...all of the things you described, I have had them over the last year.  Like many of us have said, it seems to come and go....a few bad weeks and then a break for a few weeks.  That is what I think ultimately makes people think they are crazy...it's like you keep waiting for the next "thing" or "symptom" to start.  It is terrible!

To Terri:  Thanks Terri, for your insight and replies.  It sounds like you have done a lot of research and trial and error.... I hope to eventually feel better and back to "myself" sometime!  This post has been a great source of support for me and really helps me feel like I am not alone...thanks to all.

An update:  I had my blood ckecked at my PCP actually just yesterday.  Was hoping to get in earlier, but the office didn;t call me back and then they were closed, etc, etc.  I would have liked to have my levels checked about 3 weeks ago--when I first posted here and was feeling horrible.  But, that didin;t happen,  Plus, it seems like sometimes the levels don't give an accurate picture anyway--either they are normal and you feel horrible, or if they are out of whack, you might miss it as the symptoms may lag behind.  Anyway.....

My TSH was 1.63, T4 was 1.1, and antibodies down to 256 (from > 1000 in June 07.)  They didn't check T3--I had to barter for them to even check the antibody level!!!!   So, on paper...everything is, of course, "fine."  My doc told me to stay on 50mcg per day.  

Last week I felt really pretty good...the muscle weakness and brain fog had gone.   I was still having a funny feeling in my left eye occasionally, constipated, and a few muscle twitches (but much less than a few weeks prior.)  Otherwise, though...pretty good.

Hah!!  Just started yesterday having some GI fun...sort of had this wierd metallic / acidy taste in my mouth yesterday and most of the day today.  No particular "heartburn", but I am burping more than usual????  not too bad, but just another one of those "fun", transient symptoms (I hope!)  I also did have some gurgling (like my stomach was revved up), and a really soft BM (lovely!)--  HYPER???  Again, a TSH of 1.63 might be too low for me--that's was I think.  Considering I felt great with a TSH of 5.5 (prior to starting any meds or even being diagnosed, but GP at that time jsut sort of gave me the heads up, but I felt completely fine and didn't go on meds).....hhhmmmm.

A few last thoughts/questions:

Anyone else have a wierd taste in their mouth or bouts of acid reflux?  I have never had any GI symptoms to speak of, so maybe it was just   something I ate-- I don;t know.  It is really very mild.d  But, since all these things keep popping up, I just assume that they may be related to my Hashi's / thyroid.

I have an appt. with an Endo that was ref. to me by 2 co-workers who really like him--one has Graves, the other, Hashi's.  The appoint. is not until July, however!!  But, i am going to wait....what else can I do?  I am going to bring all of my labs and questions with me...so I hope he will have some insight.  But, in the meantime, if I should need or want to have my "levels" checked again....what is the standard, or should I say, what is the standard that I should ask for.  TSH/T4/T3/antibodies??  All???  Just curious what anyone else has routinely checked.   B/C I have an HMO (lovely managed care), it's like pulling teeth to get anything done.  The Endo that i am seeing is not even in network, and I am just paying out of pocket for the consultation--and if I need to change ins., etc, from there--I will.  

Does anyone know or has anyone experienced any changes in regard to the antibody level decreasing?  I am not sure if the fact that the antibody level has dropped significantly would make me feel any different..is it supposed to make you feel better, worse, or maybe doesn't matter at all??  

Also, I haven't had time to research "adrenal" involvement, but have seen that idea thrown into the mix here and there.  I wish I could just be "happy" with the fact that I have thyroid disease (Hashi's), and attribute my symptoms to that.  But, because I am so up and down, I get worried that there is something else wrong, even though Hashi's seems to be the likely culprit for everything I experience....it's frustrating.  Everytime I get a new symptom, my mind starts racing to figure out what else it could be!   UUGGHHH!

Thanks for listening!  Good luck to all...take care!!

[Yepitsme]

I was diagnosed with Hashimoto's about 4 months ago, but previously had been treated for Hypothyroidism beginning a year prior (TSH about 7.5 at that time).   When I was diagnosed with Hashimoto's, my TSH was normal, however, my antibodies were way up.   The endo stopped the Levothyroxine I had been taking to see if my other symptoms (anxiety, muscle tension) would go away with stopping the meds.  4 months later the symptoms are still there.  I was previously put on antidepressants for the anxiety, which I just now in the process of getting off of.  My symptoms of being anxious with the muscle tension go away later in the day, and I am perfectly fine from about 3pm on through the rest of the day.
Has anyone else experienced this phenomenon of side effects that consistently occur daily but only for a portion of the day, and then go away?   Thanks for your input and I wish you all the best.

[KS34]

Yes, I too feel like symptoms are at certain times of the day.  Usually I am fine in the early morning, at home when I am getting ready for work, etc.  Then around 9:30am things start acting up.  I feel like my worst time of day is between 10-4pm.  I also usually feel better in the evenings as well.  Hang in there!

[terri thyroid]

Thats interesting about antibodies going down - wouldn't that be a good thing? Something I've known about but didn't realize I had - vitamin D deficiency very common with this and my doc tested me and I was so was under the range so after precscription mega dose I was up to par & then continued on maximum dose according to health recommendations then tested 6 mos. later - very very bottom of range - so now I'm taking just over maximum to see if this helps - this is not a water soluble vitamin so have to be careful but already my nails, hair, skin better - just a minor thing but I'm such a health nut as well being vitamin deficient would be an unusual thing for me - be sure to have your doctor check vitamin D levels especially if you live north of Atlanta, Ga area as this seems to be the point at which too little sunshine is an issue w/ vit D levels during winter etc - hope you both are feeling better - T.

[Blue727]

I feel bad jumping into this forum, but after reading all your comments and realizing the amount of experience and knowledge, I was hoping someone could help me figure this out.  I am a 28 year old male and have seen numerous doctors with mixed diagnosis.  This all started for me about 5 years ago...waking up one morning complaining my eyes felt off, dizziness and my left ear hurt.

My results and ranges are below.  I cannot gain weight no matter what I eat, I'm not tired, but have insomnia, breathless or shortness of breath, anxiety, depression, my eyes hurt, nervousness, my body feels like it's on turbo speed half the time, cannot tolerate the heat, but I shake like a bobblehead in the cold, hot flashes, shakiness all the time, headaches and almost constant diarhea (diarrhea).  I have a tough time waking in the morning and am shaking when I do.  My worst problem, is my eyelids feel as though they weigh 50 lbs. each, my right eye is sometimes noticeable smaller than my left and my eyes feel as though they are off (like unbalanced).  I am being treated for hypo, but definately feel hyper!  Any suggestions, comments or ideas on what it is or where to go from here?  I have never had a scan of my pituitary, thyroid, adrenals or thymus gland (which have been suggested).  

Results: Ranges:

10/12/05:
TSH: 1.20 0.40 - 5.5 MU/L

2/21/06:
Free T4: 0.91 0.59 - 1.17 ng/dL
TSH: 0.94 0.35 - 4.82 uIU/mL
T-4, Total: 6.4 4.5 - 12.0 MCG/DL
T-3 Uptake: 34.6 25.0 - 35.0% Uptake

8/15/06:
TSH: 1.11 .34 - 4.82 uIU/mL

10/12/06:
TSH: 1.20 0.40 - 5.5 MU/L

6/21/07:
T-3, Free: 377 230 - 420 PG/DL
T3, Reverse: 0.19 0.11 - 0.32 ng/mL
Free T4: 0.73 0.71 - 1.85 NG/DL
TSH: 1.39 0.50 - 5.00 uIU/ML

7/17/07:
Here are the saliva test results;

fTSH 57 Normal
fT4 0.25 Normal Normal: 0.17-0.42 ng/dl
fT3 0.27 Borderline Low 0.21-0.27
TPO Positive
E2 (Estradiol) 9 Male (20-49 yrs): 1-3 pg/ml, Male (50-85 yrs): 1-5 pg/ml
P1 (Progesterone) 30 Male (adult): 5-95 pg/ml
TTF (Free Testosterone) 34 Male (20-30 yrs): 60-110 pg/ml

Cortisol:

7:00-8:00 a.m. 6 Depressed 13-24 nM
11:00-Noon 4 Depressed 5-10 nM
4:00-5:00 p.m. 3 Normal 3-8 nM
11:00-Midnight 5 Elevated 1-4 nM
Cortisol Burden 18 23-42

DHEA 4 Normal 3-10 ng/ml

My morning Cortisol blood test was 19.3 (Range: 4-22 MCG/DL).
Antibodies test was negative.

8/7/07:
TSH: 1.80 0.50 - 5.00 uIU/mL

9/12/07:
Free T4: 0.75 0.71 - 1.85 NG/DL
TSH: 1.27 0.50 - 5.00 uIU/ML

1/19/08:
Free T4: 0.66 0.71 - 1.85 NG/DL
TSH: 0.17 0.50 - 5.00 uIU/mL

1/30/08:
TSH: 0.95 Range: 0.50 - 5.00 uIU/mL

Estradiol, Serum <32

Estradiol Reference Ranges:
Male: <=54

It goes on to say no pediatric reference range established.

T-3 Uptake: 40.31 High Range: 25.0 - 35.0% Uptake

T-4, Total: 5.7 Range: 4.5 - 12.0 MCG/DL

Free Thyroxine Index: 2.30 Range: 1.12 - 4.20

T-3, Total: 93 Range 60 - 181 NG/DL

Testosterone, Total: 393 Range: 241 - 827 NG/DL

[terri thyroid]

Dear Friend-

You sound hyper for sure - get a good Endocrinologist if you don't already have one - your tsh is so low - which would explain the shakiness etc - I hope you have insurance - please get to a good Endo in your town/city - also I would send this same post to the doctors forum on this website to see what he says - good luck to you & keep us posted what you find out - Terri

[ksue1953]

i just want to say that I just found this site and the comments I've read make me  feel much better. As an older woman, 54, diagnosed with Hashimmoto's and grave's three years ago I find that I too have been going up and down week by week between hyper and hypo. Now I have been told that my cholesterol is over 240. Is this a hypo symptom. i never had this before. also, since I am going through menopause, I think that the doctor's all say it is menopausal, but I have many hypo symptoms most of the time with some hyper days. I go to the endocrinologist next week so I'll see what she says. But it is great to know that it is not all in my head.
thanks for the posts

[AnastasiaG]

I just started this forum today.  I am so frustrated and completely confused by all of it.  Your comment sounded the most like me with the exception that I just found out in June I have Hash.  I didn't have a goiter or any physical symptoms.  I think this has been coming on for years and I just didn't realize it and have been treated for so many other things, depression, anxiety, panic attacks, carpal tunnel, the list goes on.  

I am so completely confused as to how my TSH levels are "normal" but I feel so terrible.  Right before I was diagnosed I had to have back surgery in February and before that I had gained about 40 lbs.  I then lost 40 lbs. fairly easy before the surgery and after the surgery got even skinnier because I became very ill with what I thought was the flu.  Then I went back to work crying because I was so tired and colder than I have ever been in my life.  I can't think straight - my thoughts are all over the place.  I forget everything and get confused as to which is right or left.  I could go on and on.  I am also on Levoxyl 75 mg. daily and I was diagnosed as B-12 deficient so I take weekly shots for now.  I don't feel any better really.  I have days where I think yes, its working a little and then BAM the next morning I don't even know what day it is.  My eyes are beginning to hurt like they are scratched.  The thing you mentioned with your tongue is something I experienced and they said it was an iron deficiency - maybe it could be your B-12 as well.

I am just on here looking for answers.  They tell me thyroid tests are "normal" but I feel terrible.  When do they increase meds if ever?  I just don't know what to do at this point and had been researching the Adderall (adderrall) but I'm not sure if that is for me either.  I have gained weight back but it is maintaining around 10 lbs.  I really haven't even talked to my doctor about this since the initial test, the nurse just called and said you are this and you this and come in get shots and take this medicine, etc.  

Any answers anyone can give me are appreciated.   Thanks.

[helen1207]

my personal experience is that the blood work results don't match how i feel. when i first was diagnosed as Hashi, all my blood word results were just in the middle of the range, but Dr put my on Synthroid, due to the anti-body, symptoms, and my gland was slightly enlarged. my last blood word result shows i am bit towards hyper, but i actually feel very hypo.. i learned here that basal body temp is another factor we can consider, so i started to measure that every morning and my temp have been under 97.8 all the time, this matches how i feel..hypo. perhaps you can check BBT as well see where you are at, if you have the symptoms, and your BBT is constantly lower than 97.8,  you need to talk to  your Dr see if he/she will raise the dose.
hope this helps. i know how frustrated it can be.

[AnastasiaG]

Thank you.  It's funny that you would mention BBT - mine has constantly for years been 97.6 or slightly lower.  Anything over that and I am feverish.  I asked about the dosage the last time I was there and they said it was too soon so I have to wait until October to have my blood rechecked again.  Everyday I feel new symptoms, anger outbursts, scratchy eyes.  I don't have an Endocrinologist - do you all think it is imperative to have one or is a family practioner qualified enough to  make these determinations?  I love my doctor but I don't want this to continually get worse.  Every week they ask if I feel better yet and when I say "not really", the nurse looks at me like I am crazy.  I should direct her to this website.  

[helen1207]

I haven't felt my old self again since last year i was diagnosed. so believe me, you are not crazy. like today. i feel very blue, and it's Friday! normally i feel happy on Friday. if you can't see your Dr sooner, i don't know, if you want to try to raise the dose just a little bit yourself? I am doing that myself... you can always cut back. just be very careful, don't go beyond 25 mcg.  also some people think take selenium helps.

with regard to Dr. VS. Endo....personal experience, the Endo i saw didn't help much, he just orderred a whole bunch of tests(he suspected my adrenal as well), when the result all came back "normal", he didn't even bother to listen to how my feel and asked me to go back to my family doctor..... since you have good relationship with your family doc, perhaps you just need to raise more questions next time: for example, can  you put me on a different medicine?  do you think this dose is right? or do you suspect i have other issues?

Gee, hope this helps.

[AnastasiaG]

I know what you mean about feeling blue today.  I do too and it's not normal for me. I am always the smiling happy funny person and no one knows how to react to me these days.  

I was thinking that might be the case with the Endo dr.  but I wasn't sure. My daughter had Graves and took the Radioactive Iodine and is now full blown Hypo and she always saw an Endo and he didn't do any more than our family dr.  I think you're right - I just need to actually talk to the doctor about it instead of the nurse and just sitting idly by while they mess around with my health.  It's just so new to me and honestly, when they told me I had this, I thought it would just go away after a few months on medicine.  No one told me anything.  What little I know is from researching the internet and until I got on this site, I had no idea how horrible this disease is - I thought "no big deal, take some pills for awhile and you'll be ok."  hmm.....guess I was wrong huh!! LOL

[MrsG1032]

I don't know if I'm bipolar or if I'm swinging back and forth between hypo and hyper with Hashimoto's Toxicosis.

I've struggled with Hashimoto's for decades.  I've had all kinds of horrible problems with it...tired, cold, body aches, foggy brained, falling asleep all the time, chronic sinus infections, dry skin (especially dry cracked heels), hair falling out and the hair that didn't fall turned gray/white within a matter of months (Was only in my 30's when this happened!  Way too young for gray/white hair.), rapid large amount of weight gain within a matter of months (especially around my middle), elevated blood pressure, elevated cholesterol, GERD, glaucoma, bowel problems (alternate between constipation and diarrhea), "female problems" (irregular periods, then no periods at all, then developed ovarian cysts, then developed large fibroids and had hysterectomy), moon face and neck swollen, facial hair growth, strange hump at the back of my neck, weird looking purple marks on my stomach, breasts, hips, thighs, night sweats, heart alternates between skipping beats and rapid beating and the list of symptoms goes on and on.  On another message board it was suggested I might also be suffering from PCOS and/or Cushing's Syndrome besides Hashimoto's.  Will see my doc again in a couple of weeks and will discuss this with him.
  
I'm on Armour Thyroid.  Doc worked me up to 3 grains (180 mg) and I still had low thyroid symptoms so he upped my dosage to 4 grains (240 mg) which I understand is a very high dose.

Now I bounce between feeling hyper and hypo.  My last lab said my TSH was 0.02 which is extremely low, but doc says I'm OK and not to worry about low TSH.  Hmmm...don't know about that.
  
Anyway, the worst of it all for me is the swings between hypo and hyper and the mood swings.  I go from being very manic to being very depressive.  Love the highs, hate the lows.
  
When I'm low I'm difficult to be around.  My husband has to walk on egg shells around me when I'm at my worst.  Friends and relatives stay away from me when I'm like that.  The depression is so bad that there are days I don't want to get out of bed.  Went to doc and complained about depression and doc prescribed antidepressants.  I went online and read about the antidepressant he prescribed and I didn't like the list of possible side effects so I have not taken the antidepressant.
  
When I am experiencing my lows, I don't want to get out of bed.  Everything from my head to my toes aches.   I move very slow and talk very slow and sluggish and have a difficult time thinking clearly.  I have trouble finding the words I want to say and forming sentences.   I can't remember from one minute to the next.  My short term memory is shot when I'm in a depressive state.  In my depressive state I think very negative thoughts and I cry a lot.

When I experience the highs, I feel euphoria.  I'm so up I want to do cartwheels around the house!  I talk constantly and fast, I am antsy and can't sit still.  Can't sleep.  Can't even concentrate on TV or a book and all I want to do is get out of the house and go go go.

Does anyone else have these extreme mood swings?  I'm wondering if my very high highs and very low lows are from Hashimoto's Toxicosis or if I'm actually bipolar.

[terri thyroid]

test message

[terri thyroid]

Hi there, just wanted to say by all means have your doc check for anything else you or he/she thinks could be wrong (especially if your insurance will pick it up) On the other hand it does sound like you could have gone hyper - which happens to many of us so always err on the cautious side and ask doc if you could try lesser dose to see how you feel - hyper doesn't always mean energy or weight loss - this often has the same effects as hypo but far harder on your body. Be careful especially with Armour - it's way more potent due to having t3 component. I just found a new doc who will test all my hormone levels besides thyroid so I did blood work and now am waiting to do saliva test for other levels and cortisol, adrenal etc. Also, this doc treats only w/ bioidentical hormones not chemical or pregant mare's urine, ie. Premarin, Depo, etc. Do get your hormone levels checked, also, I quit eating wheat 9/23/08 and this solved alot of gastro problems - also, I exercise and eat no hydrogenated oils and eat organic, no hormone foods. All these things do a world of good for folks w/ immune system problems like Hashimoto's. Also, started accupuncture w/ a doc at a teaching hospital and taking chinese herbs. This has helped me feel fabulous, down side is it is expensive for accupuncture. Went to an endo at same hospital and he couldn't get over how small my thyroid is - it used to be huge, now I swallow handfuls of vitamins no problem. Do all you can to help yourself. I wish I could be of more help. I went off all thyroid hormone 3 months ago and feel great because I eventually go hyper even on only 15mcg a day. I know my tsh has gone down 10 points since accupuncture and herbs so right now I will see what happens with other hormones which are low (estrogen & testosterone) and will then think about dealing with taking thyroid hormone again. Wish I had some insight for you but I always used to ask doc to lower dose to see if I felt better because the hypo/hyper thing gets so confusing it is sometimes hard to tell what you are so worst thing is to go too high as you don't want to go hyper.***Be sure to get vitamin D checked - this is often low in thyroid patients and can cause depression if too low.By all means take vitamins if you need to. Best wishes.