[ely2009]

in reply to: Feel like I’m going nuts….advice please #1062396

[/quote][/quote]I am also suffering with equilibrium problems and have been seeing a ophthalmologist for the mild TED that I have. I can’t really describe it as the room is spinning but it feels like my brain has to catch up to what my eyes are looking at. This worries me too. I’ve explained all of the anxiety problems to my endo and he thinks that my thyroid is shooting out burst of hormone every once in a while and this is what causes the anxiety.

Quote:

This describes me perfectly!! My levels (T3, T4, TSH) are all normal. But this is one symptom that I cannot shake. It’s hard to explain…not dizziness, not light-headedness. I also am having difficulty sleeping and some stomach issues. I had anxiety issues when I was first diagnosed, mostly because it took a while to get the correct diagnosis. I did use Zoloft for a few months then (spring 2009). It helped tremendously. I am generally against taking meds…never had to before and didn;t want to…but I wanted to feel better. I tried to take itt again earlier this summer when my anxiety returned, but had HORRIBLE side effects. So I’ve since started St. John’s Wort. Hopefully, it’ll help. I’ve had a complete physical and things are "fine."

Anxiety is NO FUN…..I didn’t have it until Graves either…good luck.

Emily

[ely2009]

in reply to: symptomatic…"normal" TSH…??????? #1061510

Thanks for your replies. I have had a complete physical and nothing else seems to be wrong. I was anemic during pregnancy, but my iron levels are back up.

My endo has explained that the fluctuations can cause symptoms…I just didn’t think it would last for so long. I’m not patient. ” title=”Smile” />

I will call to get my lab results. I would like to know what my exact numbers are so I know where I feel "best".

Today is not so bad…trying to be positive. ” title=”Smile” />

[ely2009]

in reply to: impatience and circulating hormones #1062232

Thanks for your reply Shirley. I’ve been dxed with Graves since january 2009. It was controlled rather "quickly" with methimazole. I was on very low dose of methimazole when I learned I was pregnant last June. (I stopped meds immediately – pregnancy wasn’t on our radar. I had difficulty conceiving our two older children, so didn’t expect this one out of the blue.) My levels stayed normal throughout pregnancy. I am 8 weeks postpartum. I began feeling hyper about 10 days after delivery. Bloodwork confirmed that, but we didn’t begin meds because I am breastfeeding. My endo wanted to wait and see what my body would do. Three weeks after that, my TSH was back to normal. I’ve also had T3 and T4, and they were both normal as well. I’m having bloodwork again next week to make sure I’m staying normal without meds. I breastfed my others for more than a year – so my goal is to do the same with this baby. I know I can go on PTU, but would prefer to avoid meds. So I was just wondering what the lag time is for the already released hormone to leave my body. Hopefully, my thyroid is now putting out the right amount.

I’m just frustrated – you know it’s hard to feel hyper and have a new baby. So much has been going on with my body. ” title=”Smile” />

She’s a girl – Elizabeth – and she’s WONDERFUL. My older two (7 and 11) adore her. She’s a pretty good baby, but likes to be close to mama A LOT!!!!

Thanks again.

[ely2009]

in reply to: Trouble getting pregnant with GD or Post-Op? #1062360

Here’s my (brief) pregnancy story. I was weaning off of methimazole to "try" for remission when I discovered I was pregnant. I went off immediately and felt great during pregnancy – well, as far as GD anyway. My endo warned that post-partum would be a very likely time for symptoms to come back. Sure enough, 2 weeks after my baby was born (Feb 14, 2011) I began to feel hyper again. I waited 2 more weeks before having blood drawn and my TSH levels are dropping. I had a talk with my endo and my pediatrician about my options (I am breastfeeding and ideally would like to continue – as I did for my two older kids – for a year). Most likely I will go on PTU 50mg/2 times a day. I’m having another round of bloodwork drawn tomorrow before a final decision is made because my endo wants to see if it will stay at this level (I don’t feel horrible, but definitely feel hyper) or if it will continue to drop. I’m hoping the PTU will work as well for me as the methimazole did. Why don’t you like it? I HATE meds in general, but I really hate feeling hyper too.

On a side note, I do have 3 children, but we had difficulty conceiving all of them – even went through fertility testing as well. I now believe that my thyroid played a major part in that. My TSH can be in the "normal" level but I still feel symptoms. My newborn was definitely a surprise – a WONDERFUL surprise. ” title=”Smile” /> But she came about after my TSH was consistently at MY sweet spot.

And the way you describe your symptoms – I agree…it’s just NOT ME when I am hyper.

Good luck.

Emily

[ely2009]

in reply to: it’s back…so I’m back…post-partum :( #1062461

Thanks..went to endo today to talk to her. My levels are actually in the "normal" range, just not in my perfect spot. Blood pressure and HR are normal. She suggested that since I’m not feeling terrible, that I have bloodwork again in 2 weeks to see what’s happening – that’ll be 4 weeks from previous bloodwork. If I need to then (or before then if I choose), she’ll start me on a low-dose of PTU (50 mg/2 xs day). She explained that generally during preg ang BFing, the theory is to make mom comfortable and keep baby safe – mom usually doesn’t feel "perfect," but the disease is controlled.

I think I’d feel MUCH better if I slept more than 3 hours at a time. ” title=”Smile” />

[ely2009]

in reply to: Deciding to have a baby #1062792

Hi,

I didn’t really "decide" to have a baby, but I’m 35 weeks pregnant and I’m 38 years old! I have an 11 year old and a 7 year old – we had lots of trouble conceiving both. It was quite a shock to learn that I was pregnant again (a WONDERFUL shock!!)

I was officially diagnosed with Graves in April 2009 and began using methimazole. I responded fairly well to it and my thyroid levels were hanging in the normal range by December 2009. My endo suggested that I try to wean from it to see if I would be in remission. She weaned me slowly and checked my levels every 6 weeks. I was down to 1/2 pill (maybe 2.5 mg – it’s been so long I don’t remember) every other day when I found out I was pregnant. Luckily for me, I was "only" about a week pregnant so I had only taken a pill and a half since conception. My doc is not worried about that amount. I immediately stopped meds and she’s just been monitoring me – about every 6 weeks. My thyroid levels have stayed normal throughout my pregnancy. My endo explained that with Graves (and I guess with other auto-immune diseases) the mom’s body tries to "protect" the baby during pregnancy and will often sustain a remission. What is more common, I guess, is a "flare" of symptoms 6-8 weeks after delivery. Her plan is to check me every 6 weeks for a few months and then not as often if I don’t have symptoms. So I’m just waiting and hoping for the best. It’s reassuring to know that I’m being monitored so closely and that I’m very aware of the symptoms to watch for, that I won’t get as sick as I was the first time around.

I don’t know statistically what the likelihood is that you’d fall out of remission. Hopefully, someone will respond that knows more from the medical standpoint. I just wanted to share my story and reassure you that you can have a healthy pregnancy after a Graves diagnosis and a healthy baby as well.

And, as much as I DON’T want to re-visit my hyperthyroid days, having a baby is definitely worth taking the chance to me!!

Good luck!

[ely2009]

in reply to: Switched Endo’s- very new treament plan…OPINIONS NEEDED! #1065705

I have just started weaning from methimazole…had been on 5mg and am now down to 2.5 mg/daily. I expressed my concern about not wanting to become hyper again – I do NOT want to go back there ” title=”Smile” /> She said, and it seems logical, that I know what "it" (being hyper) feels like, and if I begin feeling that way, then we’ll check bloods. It’s not like before my initial diagnosis when I didn’t know what was wrong and felt worse and worse before it was treated. And she’s right – I will be on the lookout (although hopefully not paranoid) about my symptoms.

During the time it took to diagnose and begin treating my Graves, my GP suggested zoloft for my anxiety. I was VERY hesitant to take meds, but I was also SO TIRED of feeling like crap all of the time. I decided to try a low dose. So a year later, I’m in the "normal" zone and am being weaned. My anxiety has improved – don’t know if it’s the zoloft, my normal levels, or a combo. But I do know that I feel like myself again. My plan is to see how the methimazole weaning goes, and then tackle the zoloft weaning next.

Before my official diagnosis they tested my TSH twice. BOTH times it fell within the "normal range." But I was feeling anything but normal. I had to fight to have it checked again and the 3rd time, it was just slightly below normal – so I got my referral to the endo. I have a feeling that MY normal is at the higher end of the normal range because I certainly had all of the hyper symptoms even though I was "normal."

I switched endos during the year last year and am happy I did. I found that it’s important to have one who will listen to you. My first one would say "Oh, you shouldn’t be feeling that way (tremoring, sweating, etc.)….you’re levels aren’t THAT low" But I was feeling that way!

Good luck with all of your decisions.

[ely2009]

in reply to: TAKE ME FISHING…it’s time again! #1065775

YES Mamabear!

I am feeling GREAT this year and am enjoying life SO MUCH MORE after feeling SOOOOOO terrible last year. I think GD has taught me a lot – but most especially to not take my health for granted and that life doesn’t have to be perfect to be good.

For those newly diagnosed, it WILL get better – slowly, but surely. Most days I don’t even think about Graves. A year ago – it CONSUMED me!

Thank God!
Emily

[ely2009]

in reply to: Ignorance or Arrogance? #1066676

I, too, am taking methimazole – I have been since March of 2009 (5 mg daily). This site has been AMAZING throughout the last year – full of information and support. One of the many things that I have learned is that in the grand scheme of Graves I’ve been very lucky. It was caught fairly early, I have a great endo who listens, I responded well to the meds, etc. Like you, I’m really hoping for remission. but only time will tell. I really don’t want to face the RAI vs. surgery decision either. I’ve decided that my job is to keep my body as healthy possible. My family has always eaten fairl healthy – organic produce, lean protein, whole grains. But I’m watching additives and preservatives more now. Also, I’m making exercise more of a priority – it was sometimes neglected in my busy life. Along with my multivitamin, I’m taking vitamin d and c and selenium (with approval from my doc) Will these "help my thyroid"? Not necessarily, but they can help keep my body healthy so that when I’m ready to wean from methimazole, I am strong. I’ve seen the body do amazing things…my daughter had a lung completely FULL of bacterial pnuemonia and they thought they may have to remove it, but she has recovered completely with NO scar tissue.

Like you, I am also fighting weight gain. Its very frustrating, but I feel healthier that I did a year ago, so I try not to focus too much on it.

Good luck in your quest for health.

Emily

[ely2009]

in reply to: Endo has taken me off the methimazole #1067102

Pam,
I taught first graders before my children were born and LOVED it! You are right about needing energy – and LOTS of it.
Emily

[ely2009]

in reply to: Endo has taken me off the methimazole #1067099

Pam,

I’ve been on methimazole since March of this year. My TSH was just a little below "normal," so I started on a really small dose (2.5 mg daily). But after 8 weeks my endo wasn’t happy with the progress, so I began 5 mg/daily. I guess he didn’t want to over-medicate me since I wasn’t way, way low. Anyway, at that dose I did notice a change in how I felt after a few weeks. I’m still on the same dose and will be (unless something changes) until next spring. By mid-summer (about 4 months after beginning methimazole) I felt almost normal most of the time. Now I still have some days when I don’t feel perfect, but many days I don’t even think about how I feel – such a relief from spending months being consumed by symptoms and planning my life around how badly I might feel. I feel like I have a normal life again. It’s so hard to be patient, but keep noticing the improvements and it’ll keep your spirits up.

Good luck at your appointment.

Emily

[ely2009]

in reply to: 10 days on Methimazole and Feeling Worse? #1067155

Patti,

I SOOOO know how you feel…I remeber it well. I was diagnosed in March (after several months of not knowing) and began methimazole and a beta blocker. My beta blocker dosage also had to be increased after starting treatment. It’s so frustrating to feel so sick and unlike yourself for so long. I had improved enough (less tremors, lower heart rate, better sleep) by the end of May that I was able to wean off of the beta blockers. I ‘d say it was July (about 5 months after starting meds) that I really felt normal almost all of the time. I’m on 5 mg of methimazole and my levels are all in the normal range. I feel "normal" almost all of the time- sometimes get shaky when I’m about to start my period or get too little sleep. It’s very hard to be patient, but so worth it once you’re there. I remember wishing months away – like "surely I’ll feel better by this time next month." I kept a journal with symptoms listed because it’s easy to dwell on not feeling perfect and forget that you’re actually progressing. I can’t believe how good I feel most of the time now – which I guess is s direct reflection on how TERRIBLE I felt for so long.

I guess the moral here is hang in there – I know, easier said than done. But you really will notice improvements eventually.

Good wishes coming your way.
Emily

[ely2009]

in reply to: Congratulations Nancy and Ski #1067516

I AGREE!!! I know I wouldn’t have gotten through the spring without the support and knowledge that I find here.

Emily

[ely2009]

in reply to: PATIENT CONFERENCE next week: Special Discount to Members #1067869

I REALLY wish I could come – but I’m in charge of my son’s Cub Scout camp out that weekend, which has been scheduled since Jan. I’m just thankful that I’m healthy enough to enjoy that. Maybe next year.

[ely2009]

in reply to: My choice of treatment and a question about it #1068054

Deb,
I’m trying the med route as well and am within "normal" levels and feel good most of the time. I, too, notice times when my hyper symptoms return – like when I was fighting off a cold, during my PMS time, and especially when I get OVERLY exhausted. It’s frustrating, but seems to pass pretty quickly. I’ve been on meds simce March and am willing to continue for awhile since so far, so good.
Emily

[Author]

Posts