[connypie]

#1060525

AAAGGHHHH!!!!Sorry,now i feel a little better.I dont know whats going on.Had a bad 4 years.Had meds (levo) lowered twice in 2 years.had some pretty significant mental symptoms a year ago.And now my eyes are acting up again.Here are my Lab Results of the last couple of years.January 2013-TSH 0.296—-March 2013-TSH 1.35—-October 2013-TSH 1.01—-January 2014-TSH 1.43 and T4 12.8—-September 2014-Tsh 2.36.ive had RAI 20 years ago.the anxiety is bothering me and the loss of focus.Dangit now i forgot what i was going to say.i feel like i have a very bad case of ADD.My hair is thinning and falling out again.i also have extremely weak wrists.put on about 10 pounds in 2 month.I eat but im not satisfied,searching for junk immediately after a meal.Emotional.bad memory.I know the weightgain is for hypo,but the other symptoms point to hyper.my eyes arent bulging,but i now have double vision and was diagnosed with poor muscle control.He only ever checks TSH Levels.Could i have Antibodies Or Thyrodities.I cant even spell anymore.Very frustrated.Seeing dr on monday.I need help figuring out what to say to him so he will take me seriousely.Any suggestions?It would be much appreciated.Thankyou

[snelsen]

#1183114

quick reply by me, so you get one before you see doc. As you can see below, I have been there,and done it all. The thyroid labs may be of academic interest to someone, but TED (thyroid eye disease) has a life all its’ own. Biggest thing is to treat the symptoms, dry eyes, patch one eye, see an eye doc WHO IS VERY VERY FAMILIAR WITH TED. I went to a neuro ophthalmologist, cause they really GET IT usually, have the right stuff to test eyes, staff is familiar.

Don’t know which doc you are seeing on monday, and I am addressing only your eyes, double vision. The endo won’t be treating that,and won’t want to.
Double vision made me crazy. Doc will not think you are crazy. Mention double vision first.

Other stuff, I will respond to later, don’t know the ranges of your labs, you are right about symptoms for hypo and hyper. Probably a super good physical is in order, too?

Anxiety is tough. Sometimes goes with thyroid stuff. If you have antibodies, you have ’em. Does not help with your SYMPTOMS. Thyroiditis should be ruled out by somebody.
gotta go to bed.
It does sound like you have TED, though, so get a diagnosis, use eye drops eye lubricant, read others posts, cover one eye to read or even to drive if you are seeing two of all, or don’t drive. I did, had an accident.
shirley

[connypie]

#1183115

Hi Snelsen.im seeing my primary on monday.hope he takes me seriousely.went and saw an endo about 3 month ago,before some of the symptoms started and he told me all my mental symptoms came from stress and that i couldnt have had a graves flare since i had the RAI 20 years ago.but then why did i start feeling better when my primary reduced my levo?i didnt ask the endo that,because of these damn mental symptoms,i cant remember squat.im seeing my regular eyedr on the 10. to get new glasses,he is in the same practice as my eye specialist and ill ask him to check my records to see what she wrote down.if she didnt write down due to graves,ill try to make an appt at wills eye hospital. conny

[Ellen_B]

#1183116

Did your primary check your levels? Did they indicate high thyroid hormone levels? Can you get a copy of your test results and take them to your endocrinologist since you have not been to see him for 3 months. It sounds like you are working hard on all fronts. Having the right glasses should improve matters. Finding out what your eye doctor thinks should help too.
Keep us posted. I wish you the very best. Take care!
Ellen

[Raspberry]

#1183117

Hi Conniepye, please have your doctors test your FT4 and FT3 along with your TSH to determine your levo. dosage. TSH can be affected by antibodies even after RAI and cannot be used as the sole indicator of your treatment. I have much sympathies for all you are going through. It is absolutely crazy that thyroid patients are required to advocate for themselves so strongly just to get the right care so they feel okay. Good luck tomorrow!

[SueAndHerZoo]

#1183118

Don’t have any medical or science-based answers for you but thought you might find comfort in knowing that I can totally relate to all of your symptoms, and yes, they are very hard to deal with.

I, and several others on this forum, seem to react strongly whenever our levels fluctuate, even a tiny bit. Every time I need to change doses of Levo (which has been almost every 8 weeks since I had my thyroid removed 15 months ago) I get the symptoms you describe: anxiety, emotional, can’t focus, can’t remember anything, can’t stay on one train of thought long enough to follow it through, tired but antsy, etc. My ticks act up, panic attacks return, I’m hot and then cold, I can’t sleep but I’m exhausted, etc.

So my non-medical guess is that your levels have fluctuated and that’s what you’re feeling. And yes, even though I haven’t been diagnosed with an eye problem (yet) I do notice changes in my eyes when I’m going through this.

I started tracking how I felt right after my surgery and without fail, every time we change my dose I start to feel these awful symptoms about 10-12 days after the change and they last for about 4-5 weeks. Then just as they start to disappear and begin to feel good, I have my blood drawn, doc finds that my TSH is way too low and FT4 is high, and we lower the dose again. This last time he wanted me to make a big drop in my Levo to get me (finally) to where I should be, but I refuse to make any drastic changes and would rather make these frequent, small changes. The last thing I want is to go “too low” and then have to climb up again.

And yes, a lot of the symptoms are found in both hypo and hyper, and I think fluctuation is the real culprit.

Hope you’re feeling better soon and that you find doctors who understand and help.
Sue

[connypie]

#1183119

Well,Sue thats the first time ive heard that.now i dont feel so bad.ive been having whacky symptoms for years.but was always told by dr.s,that im just too sensitive and ill just have to learn to live with it.my levels for the last 2 years are like this.0.29,1.35,1.01,1.43,2.36.the worst i felt with my mental symptoms was when my TSH was 1.43.Wich is well in the normal range,weird huh?i just cant seem to find the sweet spot people are talking about.I had breast cancer almost 5 years ago and now take Tamoxifen.its a cancer drug that removes the estrogen from my body,wich puts me in menopause.and everybody is blaming all my symptons on the menopause,but ive had these symptoms before on and off.i have the sneaking suspicion,that maybe my thyroid is trying to wake up.my levo has been reduced twice in the last 2 years.i used to take 150,now i take 112.i had RAI 20 years ago.i asked the dr for anxiety meds to see if i would feel better,we’ll have to wait and see.im not a big medicine person and dont like taking (psychiatric) drugs at all.my cholesterol is high too and he said if i cant get it down with diet he will put me on meds,but i read here on the site that cholesterol will go up when the levels change.cant remember if up or down,but am hoping it will go down again by itself.ohh and to put the cherry on top,i have cataracts now.baby ones she said.but i tried looking up cataract surgery and graves eye disease and couldnt find bubkus.i was told i couldnt have lasik because of the eye disease a few years ago.so now i worry how that is going to turn out.Geez, i need a drink.if i remember i will ask for TSH T3 and T4 labwork next time i get bloodwork done.(thanks rasberry).im seeing the eye dr on friday for my glasses and hope that will improve my double vision.im artistic and do alot of different crafts and it kills me that i cant focus enough to make them due to lack of focus and doublevision.i gotta go to bed,im tired and cant read anymore.but thankyou for responding to my rant. conny

[flora]

#1183120

Hi Connie and Sue,
I’m one of those you mention, Sue, who reacts to even tiny fluctuations in levels or dosage changes in my Tapazole, even when my labs are in the normal ranges. Whether the levels change because of a dosage asjustment, or just change all by themselves (due to the stress I’ve been under?), I experience my own personal basket of symptoms for weeks after- and yes, some from both the hypo and hyper lists. These include a high level of anxiety,reduced appetite, sleep disturbances, weird dreams, little sweats, shaky hands, internal tremors, hair loss, and that flat feeling of watching life from behind a plate glass window – just a ton of fun! But my sweet spot is out there somewhere, guys, and I’m trying to patiently float through it all till we get there. Hang tough, Graves Gang (as a favourite poster would say!)
-Flora

[flora]

#1183121

Once more fun symptom of levels/dosages changes I forgot to mention – those muscle and joint aches and pains -especially hips, gluts, knees and feet. Yep, the fun continues, we’ll find that goldilocks dose sooner or later!
Flora

[connypie]

#1183122

hi guys.i didnt know there were more of me out there.nothing like feeling alone when you dont feel good.i took a pill last night(anxiety meds) because i was so upset my hands were shaking and i couldnt find a reason for being upset.i had a really good nights sleep and so far its carrying over in today.yes Flora i get the muscle and joint pain too.curiosly i get muscle wasting too,in my knees and now my wrists.my feet hurt and the ankles too.i was on PPU? before i had the RAI and it was no fun .i was 28 and my husband had to help me of the sofa,i felt like i was 80 years old.i dont remember too much from that whole summer,it was terrible.i had no insurance back then so had to go to the clinic for treatment,where i was treated by the training dr.s.one of the nurses there also knew me from my sons clinic visits and said something to the head endo about me not looking good and acting right.he saw me and immediately put me first in line for RAI.i guess i either didnt tolerate the PPu or it wasnt working,i dont remember.i had the RAi and tolerated it,but my papituary gland didnt work for 6 month after.and for probably 4 years after i was taking a betablocker?you know the one that keeps your heart from racing.so i was either still hyper then or i was taking it for the anxiety and panic.well the anxiety never really went away,it would get better and worse,as life treats you.my life has been very stressful back then and again now.but thats life,sometimes you kick it in the butt and sometimes it kicks you.i just wish it didnt have such a big boot.lol

[Kimberly]

#1183123

@connypie – If you aren’t feeling well, definitely push for a quicker set of labs that includes Free T4 and T3. TSH alone is fine for patients who are stable and feeling great, but since you are extremely symptomatic, this additional testing could help shed some light on what is going on.

Cholesterol tends to be high with hypOthyroidism – in fact, medical guidelines recommend thyroid function testing for all patients with a new diagnosis of high cholesterol. In the vast majority of cases, treating the thyroid issue resolves the cholesterol problem *without* cholesterol meds.

Hope that you can get some answers soon!

[SueAndHerZoo]

#1183124

Thanks for chiming in, Flora. It’s sad that we go through this, but there truly IS comfort in knowing it’s not our imagination and it’s not caused by something else. When your doc tells you he doesn’t think it’s possible to feel so many symptoms from a tiny change it makes you start to second-guess your own sanity, but we KNOW what we’re feeling, and if it happens every time we change doses, that’s pretty conclusive to me.

Misery loves company – but sorry that others have to be miserable with me. What helps me get through these times the most is reminding myself that this WILL pass. Knowing why it’s happening and that it has come and gone before keeps me from getting too depressed about it.

This time my symptoms seemed to start later than usual so I thought maybe, just maybe, I was going to slide through this dose change without too much trouble, but about 5 days ago it came on and is ebbing and flowing. I actually called in sick yesterday because of it, but today felt much better, until about an hour ago….. it’s creeping up again. Maybe it’s on it’s way out for this round but I get my blood drawn in about 10 days, doc will tell me my TSH is still too low, and I’ll be off and running into another dose change. We all WILL find that Goldilocks dose eventually, right? RIGHT?!?!?!
Sue

[flora]

#1183125

Hi Everyone,
Oh, fooey – just wrote a post, and the internet konked out here!! Trying again! Just back from a consult with my doctor about my bloodwork of 10/7. My TSH climbed from 1.58 on 8/27, to 6.22 on 10/7. TSH range has been tightened here (normal is now 0.27 to 4.22), so I have gone a little hypo, in those few weeks. Even though it’s only “a little” hypo, I am one, (like many of us here) that feels every little change. This could explain those annoying symptoms I’ve been feeling, and venting about here! My doctor agreed that this swing is a fair bit, for me, and is reducing my Tapazole dose to 25mg/week, down from 30 – another dose change, but I guess that’s the only way we get there. (The lab did produce a Free T4 for me this time – they will only supply it, if the TSH is out of range. It’s 13, on a recently tightened range for normal of 12-22, so I am just on the lower edge there.)
I keep reminding myself that these are not huge big swings, though, and that the pendulum will settle on “my” dose, one of these days – for all of us, too.
All the best,
Flora
PS: One thing I learned at my last appointment, is that it pays to listen really closely to what the doctor is saying – I was the very last appointment on a busy Friday afternoon last month. We were discussing the drop in TSH, down to 1.58 in August – he really wanted to drop my Tapazole, which would have dropped the TSH even further, and sent me ,more hyper. It took us a while to sort out the TSH feedback loop thing … glad we did.

[connypie]

#1183126

Hi Guys ,im back. primary gave me the anxiety meds,told me to take no more then 2 a day.so far im taking one every 2 days,dont want to be doped up.the meds seem to carry over into the next day.my eyes are getting a little worse.cant do alot of computer work anymore.give myself raging migraines with vision disturbances.had my eye glass prescription checked and they are off.one eye got worse with nearsightetness,and my reading part almost doubled on both eyes.eye dr said it would fluctuate,but they didnt tell untill i went back for another appt.and of course freaked myself out until he told me that it was going to go up and down.im talking about the double vision fluctuating not my sight.Geez that was another Graves Fart.thats what i call my brain farts,when i make stupid mistakes.lol im getting new glasses next week.—-$300 DOLLARS—- yeah, you know we will be eating mac and cheese for a while.on friday i go for my first vision therapy appt,wich costs –$250 Dollars—and neither health or eye insurance pays for it.why am i paying them?i think ill need another pill.well gave myself a headache writing this.im getting High Definition Lenses,maybe ill be able to get cable on them.lol.hope you guys are all feeling well,flora hope youll get better soon. connypie

[snelsen]

#1183127

connypie, I worry about the validity of vision therapy. TED is tED. THe eye muscles are sclerosed, big and fat, they do not contract and expand as they should. They just can’t DO IT. Since you are paying out of pocket, I am hoping you can explore this, and perhaps Kimberly knows something.

Another discouraging thing I have to say is that, while, your eyes are changing all the time, it is not the time go get glasses. I was told the polar opposite of what you are doing. Don’t waste your money. They may be fine for a week, then your eyes will change again (during TED) I sure hope this is NOT the case for you, and that they really help you.

Hoping Kimberly will jump in with her knowledge about vision therapy
Shirley

[Author]

Posts