[cathycnm]

in reply to: New to Graves and struggling with life… #1075374

Killikat – Lessons, indeed. I look at Graves as my chronic burn-out illness and osteoporosis as my chronic under support illness by what they symbolize in my life!

My lessons seem to be about creating better balance in my life and about building supports that are really there when I need them. When I was going hypo rapidly after RAI, I woke up each day picturing my life being about 3 priorities – Health, school and work. In about that order. If one considers all that goes into health – job satisfaction, happiness, friends, optimism, as well as physical illness – that was a tall order and a huge shift.

My insurance uses a firm called healthways where you do an online assessment that gets "scored" with labs and physical findings. My score started great but has slid 3 points a year the last two years – so I am a low B now! There is a similar type of test on line (free) at http://www.realage.com – I take that one every few months to remind myself that work, work, work is not where I need to be headed. Balance, balance, balance – keeps me from breaking hips! Cathy

[cathycnm]

in reply to: Hyperthyroidism vs. Graves #1075675

Hey Lynn – Thanks for letting me (us) know – sounds like you made the Graves club with your diagnosis . . . welcome! Yea – the beta blockers are real helpful – so glad you are feeling better.

As for me – my co-workers would probably be more supportive if I worked at the same campus as they do. They rarely see me – so my "line in the sand" about putting health first may have seemed inappropriate. The staff on my campus who saw me during my worst moments were supportive. So, it is a lesson in face-time = friendship = trust. I am dissappointed but not surprized at their reaction. Working on building more local supports into my job as those are the ones that stood the Graves test!

Lipids = cholesterol, triglicerides, LDL and HDL – will re-test in 6 months but it has gotta be partially the hypo cause my diet and exercise don’t fit with heart stuff – some family history, though. This whole thing is quite a journey.

Seekingclarity – I have finally gotten well enough to stay up past my bedtime, but I am not clear enough to tackle your questions at this late hour with an early day tomorrow. Hopefully some others can do that shortly. This is a wonderful group to provide support so I am glad you are with us! Cathy

[cathycnm]

in reply to: Acai berry #1075303

Helene – I found this article on web-MD – not sure if you saw it in your web search. http://www.webmd.com/diet/acai-berries- … h-benefits

I would just say, be sure your sources are reputable – there are lots of health food dealers on the web. It is important to look at the evidance for these things – as many of the claims can be false. As with any weight loss (esp with an underlying condition like thyroid), I recommend talking with your doctor first. Though from this article – sounds like they are berrys. Cathy

[cathycnm]

in reply to: After RAI #1075306

Krnn – I can’t answer your entire question. I did review the research before choosing RAI because my mom died of stomach cancer just 2-3 years after her RAI treatment for Graves. She always blamed the RAI – but the reality is she smoked all her life and had problems with alcohol in her earlier years. I did find one study that said there was a very small increase is stomach cancer incidence the first 3 years after RAI – though most studies found no correlation between stomach cancer and RAI. Given that RAI goes through the gut to be absorbed, it makes sense that the stomach would be more susceptible than the uterus. As someone who has been a gyn practitioner, I have not heard of an association.

GERD is usually related to a change in tone of the esophageal opening between the stomach and the throat. It is thought that it is the acid and bile from the stomach and intestine that irritates the cells. Again, I personally do not know of any correlation between GERD and RAI.

It sounds like a real plate-ful to deal with both cancer and GERD. I am glad you have joined the board and hope the support you find here is a positive for you as you deal with all of this. Let us know how you are doing! Cathy

[cathycnm]

in reply to: New to Graves and struggling with life… #1075372

Interesting, Ski. Thanks for sharing. I also teach positive psychology for nursing and am fascinated by the research on optimism and health outcomes. Such as, a Harvard study (as I recall) found that men were more than 2X as likely to survive a second heart attack if they were optimistic. I often wonder what optimism does to the immune system. And reading the posts about illness after Graves – when our ability to be optimistic is thrown off by illness, are we more likely to become ill? I am a huge optimist but have really had to work at that with hyper/hypo thyroid. Interesting to ponder. Cathy

[cathycnm]

in reply to: New to Graves and struggling with life… #1075370

Joy – Yes, I am a nurse-midwife – now teaching nursing students and directing a rural program – and in process with a post masters in another specialty. I cannot imagine night shift and on-call hours with thyroid issues!!! But, guess that is why we have a nursing shortage with our average age late 40’s – early 50’s the work becomes too rigorous!

I am glad you found a doctor – it is hard to find a match! It is cool you had a CNM for one of your pregnancies – where are you located? Thyroid issues in pregnancy are so common – yet can be so difficulty to deal with. I hope you will stay in-touch and let us know how you are doing – we can all celebrate the birth! When I was practicing, I just loved it (until I burned out, which brings me to the next topic).

Killikat – True on stress. I had hyperthyroid symptoms about 2 years before I was diagnosed after a stressful move – but my thyroid tested normal. So, when the (almost identical) symptoms recurred last fall (yes, very stressful work), I though it was more of the same – just too much anxiety/burn-out. I have often wondered if there was a "personality" more prone to Graves – and I say this to offend no one but when I examine my life, I tend to throw my passion into work and loose the balance – then burnout. What is Graves other than our metabolism "burning out"? My sister – who is hypo – is disabled and works only a few hours a week – much more type B her whole life. Mom was more like me and was over-responsible. Your question about chickens and eggs has been rolling through my head for weeks and I am hoping I can do some research on this in my post masters journey!

[cathycnm]

in reply to: New to Graves and struggling with life… #1075367

Joy – You ask a lot of good questions that I hope you will share with your doctors – it sounds like you are in good hands. Most MFM guys I have worked with are good at answering questions, etc. It sounds like the nondetectable levels are probably TSH. Remember that pregnancy does change the metabolism so can be the trigger for thyroid problems. It is hard to know if this was going on before you were pregnant. And, yes, thyroid and pregnancy symptoms are similar for some folks – making it hard to know which is impacting what.

As far as the genetics of it – hypo and hyperthyroid can both have autoimmune components, so it is not uncommon to see a mix of hyper and hypo in a family. My mom and I are Graves – my sister is hypo. As far as being tired and wanting to eat and sleep – sometimes that happens. I had a similar experience and could not believe it when they found me hyper – cause I felt more hypo but had a mix of symptoms. I think with pregnancy, you are also having so many signals to the body. Graves wears you out by speeding up metabolism and pregnancy further stretches energy stores. Your body may have "known" it needed the extra food and sleep to keep the pregnancy healthy – giving you almost exagerated symptoms of pregnancy.

[cathycnm]

in reply to: New to Graves and struggling with life… #1075365

Silvia – What an awsome birth story. Thanks for sharing your silver lining with us!

Joy – You are 21 weeks pregnant now? During pregnancy the anti-thyroid meds are often the safest way to treat thryoid. Surgery carries a risk with anesthesia, as does RAI with radioactivity, during pregnancy. It sounds like you are following closely with your doctor – which you need to continue to do. It is important to monitor thyroid closely with pregnancy, as it can temporarily change due to the metabolic changes of pregnancy. It is very important to your baby for you to keep you thyroid in regulation during pregnancy – so I know the stuff tastes bad but you are over 1/2 way through your pregnancy. Hang in there – you are doing a great job. Other options will be available to you once after your pregnancy. Are you seeing both an OB-gyn and an endo for your thyroid?

[cathycnm]

in reply to: Hi wacomom #1075317

Wacomom – How true of the bounce to hypo. I go from shooting drivers on main street to crying in business meetings! All we can do is laugh at ourselves, I guess. I agree – just feeling validated is huge. I am sure it helps us to heal faster. I would love to do research on Graves patients who used this board vs those who did not have external support to see who healed faster with fewer complications! Anyway – you and I got our treatment about the same time and I was hypo by early Oct – so we are at similar places in our healing journey.

I have an older endo who put me on the low iodine diet for 2 weeks before the scan and had me stay on it for another 10 days until they could order in my RAI – and then for 5 more days. It sounds like that is not the norm to do the diet – has anyone else had to follow the LID (low iodine diet) pre scan or RAI? Just curious. Cathy

[cathycnm]

in reply to: Hi wacomom #1075314

Wacomom – My own rollercoaster is starting to slow down after hyper and then hypo – not back in normal range. You post brought to mind a time last summer when I was on my walk, crossing the main drag in my rural community – I had the light with 15 seconds left to finish the last lane of traffic. Some fellow in an SUV gets into the intersection and starts honking and yelling at me to hurry up. Without a blink – I turned around and yelled back that I had the light and I would be happy to call the cops if he wanted a legal opinion on who had the right away. Not me – but not bad for someone who is often too flexible when others get demanding. My bout with those symptoms taught me how to stand up for my rights without fear ” title=”Very Happy” /> (There were several similar incidents – some before I was diagnosed and I thought I changing personality).

As far as strategies – I found going out of my way to focus on gratitude was most helpful. Sometimes, it was after my thyroid had reacted. But – I have thought of that man in the SUV 1,000 times thinking how unhappy he must have been in that moment to be so mad at me for slowing him down 10 seconds. And then I look at my own reaction and see the unhappiness. I found taking time to smell the roses and write down things I appreciate helped a lot. Good luck! Wishing you health and healing. Cathy

[cathycnm]

in reply to: graves antibodies #1075319

Janet – The antibodies of Grave’s disease attack the thyroid and cause it to release too much thyroid – these are pretty specific for the thyroid. There may be some cross-over with the eye disease that accompanies Graves. There are no other organs I know of that are impacted. The reason of the antibodies is that the immune system has lost its ability to recognise the thyroid as "self" and attacks it as "non-self".

However, if someone has Graves, they have a greater risk of other autoimmune diseases, diabetes, lupus, etc. These are not the same antibodies. What we think causes the immune system to start recognise self as non-self has to do with the internal mechanism for eliminating self-antibodies is not working. So, it is possible for other self antibodies to occur in the same person – but the self-antibody for each illness is specific to that illness. Hope that helps. Cathy

[cathycnm]

in reply to: graves/RAI/pregnancy #1075324

Janet – I agree with all Bobbi has said. As a nurse-midwife, I have seen some women struggle with fertility and miscarriage with thyroid issues. Still, the sickest thyroid patient I ever saw as a practitioner was in full blown storm when she came in for her first OB visit during the first 3 months of pregnancy. She had not been diagnosed before that day – here I was doing her exam when suddenly it clicked what was going on. I got her to the residents who admitted her to get this under control. Everyone predicted she would miscarry – but she carried to term and had a healthy baby.

In addition to a pedi, I might suggest you talk to a OB or better yet a perinatologist about what we know about thyroid in pregnancy – this will give you a heads-up about current research so you can anticipate what your daughter will be facing. My best to you! Cathy

[cathycnm]

in reply to: New to Graves and struggling with life… #1075362

Jill – I laughingly call this my bad hair year – mine did not fall out but is already very fine and straight. I remember going to get it cut and styled this summer while waiting for RAI. That poor hairdresser – said it was the most stubborn head of hair she had ever worked with. . . finer and straighter than ever. I decided to take the opportunity to grow my hair out natural – something I was going to do at age 60 not 53. I did get highlights a couple times – but stayed away from full color and kept is shorter. It turned out nice enough that I will keep it the way it is. With my TSH bouncing back to normal, my hair seems to be shinier and more willing to hold a curl. There is light at the end of the tunnel.

I just got brave enought to play with make-up to try and hide the bags. I do find it is a little irritating to my eyes – so only wearning it when I have reason. I look in the mirror, however, and the sparkle is coming back into my eyes. I start to look like me again – there is light at the end of the tunnel. Cathy

[cathycnm]

in reply to: Monitoring TSH after RAI #1075427

Thanks, Bobbi – that sounds like good advice. I could always wait until I see my endo in January and talk with him then, enless he calls first to talk. He is watching some other (osteoporosis) labs now that were up so not sure what he will be doing with those, either. Thanks!!!

[cathycnm]

in reply to: I need some help making up my mind. #1075414

Mike – I will speak for myself and why I chose RAI here. I, honestly, would have been a good candidate for anti-thyroid meds, given my Graves was mild and my age/gender. However, I also have osteoporosis and the Graves can (and did) work against regaining my bone health. I am on a 2 year treatment with a new med for the osteoporosis and I wanted to make the most of that time – hopefully get my bone health back before I break a bone – which tends to happen to women in their 60’s – I am in 53.

Had I chosen PTU – there would have been the wait to see if it worked – and, if not, then RAI – all the time my bone time clock is ticking. Had I gone into remission, I would have been sitting on the edge of my chair wondering if I would go back into active disease and have this further damage bones before it got caught. I read up on it and everything I could find is that Graves with underlying osteoporosis, one should go with RAI due to the bone risk.

I had a bad 6 weeks after RAI because I reacted very quickly and my TSH was bouncing – that means all my neurotransmitters (chemical messengers) were off. If I had it to do over – would I do RAI. Yes, I would. I live with some fear, however, because my mom had Graves and had RAI two years later she died of stomach cancer. However, there is no real evidance to say this had anything to do with RAI. Give cancer tends to be precancer for years (and her RAI was only 1 year before her cancer diagnosis) – and she smoked (and used too much alcohol when younger) – those were her real risks.

So – the answer is I was pleased with RAI despite the initial jolt and I plan to take very good care of myself the next few years to stay healthy! Whatever choice you make – I think it is important for you to feel it is the right choice for you. Let us know . . . Cathy

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