Will I ever feel normal? I am so scared.

[marge529]

The first of February I began having all the symptoms of hyperthyroid but didn't know what was happening...anxiety, pounding heart, sweats, nausea, tired and feeling like crap and the most distressing of all....BP that would zoom up to 200 and then down to 100.  I went to ER 3 times and they basically said they couldn't do anything more than wait with me until the BP went down and send me home to call my doctor in the morning.  Finally I got an endo appointment and I have nodules and thyroid levels for hyperthyroid.  (that's right isn't it for too much thyroid?)  I am on 10 mg of methamazole once a day and a beta blocker both as of 5 days ago. (as well as triamterene for BP)  To wait for relief another month feeling like this seems like eternity !!!!  I am so weepy after a night of skyrocketing BP.  I rarely have had a night without it so now I am afraid to even go to sleep at night for fear I will have a stroke or heart attack even though when my BP elevates it wakes me up because of the ringing in the ears and rapid heartbeat, etc.  I am so discouraged and wonder if I will ever be well again or if I am damaging the rest of my body until the thryroid blocker kicks in.  I could use a word of encouragement from someone who has been in this place and is "normal" feeling now.  The beta blocker helped some, at least I had 2 days and 2 nights before it all fell apart again last night.  First couple days and nights in a row since this began.   It is comforting to know other people have felt this way too and I am not losing my mind.  Thank you for anyone willing to share.   (If this appears twice, forgive me, I am new to the board and desperate for some support.)

[dgmootry]

Hey Marge, I'm so happy you are feeling better, I can't believe all that your going thru, it seems so overwelming to me, I guess I just had a fraction of what your going thru and that was horrible. I am so happy your able to see the light at the end off this horrible tunnel. Take care and I hope your Doctor will have some answeres for you, And don't feel bad or quilty for calling and complaining to them, your life is important and what your going thru is tramattic don't let anyone belittle that. Talk to you later, I think I got this site somewhat down, Debbie

[marge529]

Hi debby,

You can get an update on my reply to Kansas24.  I am taking a good probiotic too and it is helping with the elimination issue. :-) Thanks.  Yes, I have a hard time finding things on this board too!  I also find things interacting with the drugs so I try to space things out now that I am not taking quite the list of meds.  Kansas24 had a good suggestion about the methamazole which I am going to pursue...taking it twice a day opposed to once.  Yes you dear friend who took the time to write, I am doing better as you will see in the above post.  A ways to go to feel good but at least I don't feel bad and I have hope.  Thanks again and have a wonderful week.  Marge

[marge529]

OMG, you had it even worse than I ever have!  I can't even imagine average heart rate of 140 and not being able to sleep.  I guess I didn't know how well off I am...relatively speaking.  It has been 3 /12 weeks since beginning the thyroid blocker and things have finally started to improve some.  Less ear noise, less heart pounding, etc.  I have always been able to sleep even after being awakened by what I call "shock waves" running through my body and nausea...you had it more rough.  Now I am mostly dealing with fluxuating BP, nausea and fear.  I am off metropolol because my BP is now so low in the AM (80/58 low). I think my body is trying to get back to a normal balance with the thyroid not shooting out all the fight/flight  juice. :-) . BP goes up in the daytime but so far over 150/80.  I am taking my triamterene still (which served me well controling BP until the thyroid went whacko)  but after the weekend will call Monday (they are sick of me I am sure) and see if even this is too much.  But of course the problem is it is so low in the morning,then  high during the day and early evening...how in the heck can that ever get regulated!!  I will also ask in the morning about taking the methamazole twice a day instead of only once...that makes sense to me.  I still have nausea beginning every afternoon and now wonder if I have more than one thing going on.  I thought it was nerves and maybe it is.  But I have had relief or reduction of  some of the symptoms the last 5 days and feel it must be the methamzole finally kicking in.  For sure something is changing.  Next endo visit (2 weeks) lots of questions including options.  I have only seen him once and was so sick I thought I was dying or would have a heart attack or stroke and would have done most anything he suggested. I understand about you thinking you might have a brain tumor!   Thank you so much for your insight, I am so happy you have found a successful way to deal with this.  I'm still picking my way through it all but have hope.  Have a great week.  Gratefully, Marge

[dgmootry]

Hey Marge, its been awhile, I have a horrible time finding where everyone is, I've looked for your post but I wasn't in the right place I guess, well quite a few days have past, how are you doing? as for probiotics yes to them, when I went hypo and was on levoxyl I was horribly constipated, so I ate yogurt and I had some probiotics plus I made bran muffins, which I think I ate way to close to my meds, and it depleted my meds, so my meds didn't seem to work right, I find its all about what I eat and when and how far apart from my thyroid meds, as to how well they work and I feel. So have you found out what they want to do, and what caused your problem? sounds like your getting ahold on your condition, so happy, well looking forward to your post, I think I know where to find your comment, talk to you later debbie

[kansas24]

Yes there is hope and you will get better! Have you discussed ablation with your doc? I personally think it's much better than the ups and downs of trying to manage this with no stable ground to work from. I remember very well the period where I was hyper and then later after the ablation... a month or so of being hypo. I would choose hypo any day of the year. It is a whole situation that no one can possibly understand unless they have been there. I was so bad a gallon of milk took both arms to lift and it seemed like it weighed 100 lbs. My heart rate was on average 149 and would jump to 180 if startled. I could not manage more than 3 stairs and I had to lay down where ever I was. I was so afraid and thought I had a brain tumor because of all the symptoms. But... it was all over when they killed my thyroid with one big chalky pill. I hear lots of docs don't want to do that, but I am glad that mine did. I started feeling better within a couple of days and then gained 20 lbs in a month just eating salad :( And the best part was that I was able to sleep again. 5 weeks with almost no sleep is no party for sure. I was glad to say goodbye to that whole mess. Now my little white pills are my buddies...

[kansas24]

I don't know my exact test results... some doc don't want to share that information. Yes the Synthroid works fine for me. I tried the Armor at one point and it was awful to say the least. It was either too much or too little, and smelly. As for any lingering symptoms... no not really. After a while it becomes no biggie. I just take my Synthroid every morning with my coffee and that's that! If I forget, I will find that I am very tired later in the day and find myself dozing off in early evening! My dosage has lowered some over the years and after the ravages of menopause calmed down. I have one other complication -an allergy to artificial colors... which means my dosage has to be some combination of the 50mcg... so I take 75mcg a day with the help of a little pill chopper. 50 is the only pill that is white unless you get them from Mexico where they are all white. Go figure.

[Shiny76]

Hi Marge, your best success will come from taking your meds at even intervals.   Methimazole must be taken twice a day, even three times a day if you can manage it.   It wears off very quickly and that is likely why you have the big swing at night.   Also metoprolol should be taken twice a day, again because it wears off to soon to last a whole day.   This means dividing up the doses - the first two days you do this may not feel great because no divided dose will be as big as the one big dose, but after you body adjusts you'll have even coverage day and night and feel so much better with no more spikes.   If you have doubts (after all I could just be some kook on the internet) talk to your pharmacist who will verify what I'm telling you and then let your endo know you'd like to try it.   I remember how scary those first few weeks are - it is rough but it will get better!

[marge529]

thank you for the hope.  After 2 months, I feel like I am losing my mind.  My doc keeps saying it is the disease, not you, you will get better but every day seems worse than the last.  Good to know there is hope.  I am so happy for you...yes, no one knows how horrible this is unless they have had it.  It helps to talk to someone who does!  Makes me believe I am not suddenly going crazy.

[gimel]

You have been on Synthroid for quite a while now.  How satisfied are you with the results?  Do you have any lingering hypo symptoms?  Would you please share with us your thyroid test results and reference ranges shown on your lab report?  Also, if available, Vitamin D, B12 and ferritin.

[kansas24]

My thyroid went wack in 1994 with Graves disease, it was so bad my doc recommended ablation asap. After 5 weeks with no sleep and all the horrible symptoms (I thought I was going crazy) that I couldn't even imagine before, I had to wait a while to get in for the uptake scans and results. They immediately ablated my thyroid as my doc and the radiologist said it wasn't worth fighting with blockers as it would be a constant battle against thyroid levels that would swing one way and then the other. I got the 2nd highest uptake award of the year from the radiologist. I have been on synthroid for all the years since. Yes... you will feel normal again. I am glad I chose to go with the docs recommendation to ablate.

Best of luck to you... it is a situation that no one can imagine unless they have been thru it.

[marge529]

also, did you take any probiotics?  I am having a hard time getting regular with all the meds and inactivity.

[marge529]

A blessed Easter to you Debby,

After 2 1/2 days, I was able to take some solid food this morning...scrambled egg...and am chugging the pedialight down.  So far it has been ok thanks be to God.  The freight train in my ears is better this am and I am not so shaky either so I am very grateful.

I don't know if this post goes to a general post or just us?? but I take:

Methimazole  for thyroid  and a beta blocker of metoprolol for BP and side effects as well as Triamterene for high BP.  I usually take the triam in the morning about 9am, the methimazole with lunch and the metoprolol with dinner. (that one says take with a a meal).  and I take my new best friend,
phenegran, every 6 hours for nausea.  If I continue as I am, I may not need the phenegran today.  Thanks for caring Debby.  Warm regards, Marge

[dgmootry]

Marge I hope you have a restful Easter, I truly feel for you, you sound like you have it really bad. I don't know when you take the beta blocker, find out if your suppose to eat anything after or before you take it, I know with this thyroid meds you can't eat for an hour after you take them and if you take certain vitamins you have to wait 4 hrs. I didn't know this when I started my thyroid meds and boy did i feel awful. Wasn't till I went to the homeopath doctor that I truly learned how to take my meds. Post what you are taking and see if anyone knows how to take them. Peace be truly with you, I'll keep you in my prayers, debbie

[marge529]

I got the carrot juice.  I had a very bad, bad night.  Nights are the worse.  I was so sick to my stomach, dry heaves all night,  and yes, I burp a lot and feel like I need to burp a lot.  The ear ringing and buzzing, elevated BP, etc.  The glad must had kicked out a powerful punch of hormones last night.  Today I am on wipe out.  I can keep down water but food sounds repulsive.  A day of just rest.  Maybe tomorrow.  I looked on the calendar and it has only been 2 weeks since I took the thyroid blocker...he said it would take at least one month, maybe 3 to kick in.  Seems like eternity with a night like last night. Thanks for sharing your story and the things that helped you.  Yes, broccoli has become one of my new best friends!:-)  Hope you have a great Easter, it is good to talk to you.

[dgmootry]

Hey, glad you had at least 1 good day, I really feel for you, reading your post sure brought back some scary memories. Not being able to sleep was one of them. Do you do alot of burping, weird question, but I sure did. As for the Radio Active Iodine, I also had that test, but I'm talking about the pill that is like 500x stronger, and it will destroy your thyroid, or at least that is what it was suppose to do to mine, but I think I had to many noduals so it just put my thyroid part way out of commission, so I have to take a thyroid hormone, luckely very low dose. That vitamine I was telling you about is called Ubiquinol 100mg I'm having a hard time reading my Doctors writting plus she wants me to take Vit D. Also be careful don't use iodized salt. Somthing else with iodine. I sure hope the carrot juice works for you as it did for me, Like I said before eat brassica family food, which include broccoli cauliflower brussel sprouts raw would be good, and cooked. When this was going on with me, the doctor said just take it easy don't get stressed, read or watch tv take your mind off of whats going on, thats what I tried to do. easier said then done, I know, take care stay calm, sleep when you can. Debbie

[marge529]

Good advice Debbie.  Yesterday good, today not so good.  My chest always feels tight and sore and I couldn't sleep last night.  I don't know if it is heart damage from weeks of soaring BP before it came under control,  etc., or the meds. or what.   I have an appointment with a heart doctor in 3 weeks.  It is always wait, wait, wait isn't it?  I am talking to a woman today that goes to an MD that uses alternative meds.  She also has this condition so I am hoping to find a good resource for some ways to help my heart, it has gone through hell in the last two months and my chest aches a lot.  I will ask about the supplement you mentioned and am going to go get some carrot juice today.  I really apprecaite the advice about the radio active iodine but I think I maybe already had it.  I had what they called an "uptake" scan where I swallowed a radio active pill and then then measured how fast it went into my thyroid.  Is that what you had?  I have been reading about drastic things on this board and appreciate the warnings.  

[dgmootry]

Hey, well I hope your feeling alot better, I think you might be right about the shrimp that very well could have put you over the top. If you take vitamins check to see if iodine is in it, if so I'd lay off of them for awhile. I recently went to a natural path, she wants me to take ibuquenal ( spelling?) just in case there was any harm to my heart, hopefully not, its expensive, but from what I read its a very high antioxident that when where young our bodies makes itself, but as we age it makes less and less, you can get it at your local health food store.. Hope your off those meds, Dont let your doctor talk you into Radio Active Iodine before you truly investigate it and investagate alternatives, like I said before theres Vegis. that help bring your hyperthyroid down, take care, May your health Angel be with you, debbie

[marge529]

Debby,
That is very helpful and interesting because the night before my thyroid went totally biserk they were having a shrimp feed where I live and I had a big plate full of shirimp and even shrimp on my salad. I think the iodine put me into high gear too.   I was so taken by surprise, never dreaming what the next 8 weeks held in store or what was happening to me.  
scarey...oh yeah, you are right about that.  My blood pressure went nuts...from very high to very low and no meds were helping.  Then the heart pounding, nausea, etc.  I too wish I had know about natural ways but by the time I got an Endo appointment, etc. and found what what was the matter  I was so sick I couldn't wait and I went on the meds too.  THANK YOU for sharing about the carrot juice.  I am hoping to get off the thyroid blocker and beta blocker eventually when my system has calmed down and I have more good days than bad days. The side effects are pretty ugly aren't they?  But it has been 3 weeks now and they are subsiding and my BP is becoming stable...thank God.  I was that way for a month and honestly thought I would probably have a stroke or heart attack before I got help.   I am looking for a doctor right now that will work with alternative treatment as well as conventional meds.  Not easy to find.  I wish you well Debby and thank you for taking a little of the feeling of isolation out of having this terrible condition.  I'm sorry about your story but maybe if people who read these posts see that iodine rich foods might trigger trouble if taken in excess as you and I did, they will be more moderate and save themselves a lot of suffering.  May Easter bring you renewed strength and hope.

[dgmootry]

Hey was hyperthyroid for over 28 years, but it didn't bother me till 1 year ago, I went into a hyperstorm which was like everything was turned on high my heart was raceing off the charts and my BP was way high, you I believe I was that way for a week, what happened I believe was I was eating alot of seaweed wraps I mean alot, and I put too much Iodine in my system, which turned my thyroid on big time, Well I read I should drink carrot juice and so thats what I did alot of it, we went to Safway and bought a 25 pound bag and juiced my own and you know that brought the symptoms under control plus I ate alot of Broccoli and cabbage and colliflower these are vegitables that can actually turn your thyroid hypo temperarilly if eaten to much, I'm not sure how many months it took for me to see my indo Doctor but I felt pretty good but so scared it would happen again, so I went and took the little pill Radio Active Iodine, now I look back I wish I would have just eaten lots of those vegitables cause now I'm dealing with trying to get used to my thyroid meds,. hope this helps good luck debbie

[marge529]

.oops...  I posted  this in the wrong spot on this board...(least of my worries. :-)
Bad night and difficult day...will it ever be better?  As someone said earlier, this is the club no one wants to belong to.  Hope your day was better

[marge529]

Bad night and difficult day...will it ever be better?  As someone said earlier, this is the club no one wants to belong to.  Hope your day was better.

[marge529]

Thank you so much for taking time to reply.  It meant a lot.  Wow, your journey has been so long and rough. All the time that is wasted....waiting, waiting, waiting and you are right, it is life altering and treated by physicians often as the sniffles.  That has been difficult for me as well.  I will say when I wrote the above post it was after a terrible night and I felt desperate.  I have had two relatively good days and night so I am feeling a little more hopeful.  The awful ear buzzing, prickly head pain and dizzy feeling is almost always there but I am not barfing and my BP while high, is not dangerously high and I and can function.  I just wonder what all this does to the rest of the body.  I also wonder if there are foods that trigger or surpress the hormone, etc.  I wish there was a place that looked at this wholistically.  Common sense got me off coffee and my glass of wine at night but what about other food triggers?  On my own I decided until this is better I would go off gluten and wonder if that is why I have had a couple good days.  Someone shared that lemon balm tea helped her a lot so I picked some up.  I appeciated so much hearing from you....just knowing someone who knows how debilitating this can be cares.  With your Hashimoto diagnosis, do you have any prospects for relief?  When was it diagnosed and what did they do for it?  I too worry that they are shooting in the dark with my diagnosis and I am wasting time getting to the root of the problem.  While I feel good, I have a lot of things to catch up on today.   I hope today is a better day for you.  Thanks again for caring enough to reply.  Marge

[leilajax]

Yes, I've been there and the waiting is just awful:(  Everything feels so emergent and dire during a hyper phase, but doctors don't seem too concerned, which is beyond frustrating!  Do you know what your levels were/are?  I was hyper for a couple of months before it was caught and I was told I have Grave's (high TSI as well) and put on 30 mg of Methimazole for a month, then 20 for a month, then 10 for a month and then I was euthyroid without the medication.  During this whole phase, I never felt any better... even when my levels were euthyroid.  My endo told me that my thyroid must not be my problem and sent me on my way.  Finally (with joint pain and brain fog becoming excruciating) I went to a rheumatologist that discovered that I have Hashimoto's... a thyroid problem indeed!!!  Do you know if you have had your thyroid antibodies (TPOab and Tgab) tested?  Depending on your levels maybe you need an increase in your methimazole.  I'm still searching for relief and it's been over a year now, since someone noticed my levels were off and much longer with symptoms.  Hang in there (I know it's extrememly difficult), but maybe we can kick this thyroid's butt together:)  P.S.  Don't let my personal battle with Hashimoto's discourage you.  With the right doctor you might feel much better, much sooner than I.  I've just had horrible luck with doctors!