[cathycnm]

in reply to: I’d like to start a support group in Alameda County, Calif. #1074607

Brenda – There is nothing better for the soul (and the immune system) than finding "work" that uses our strengths and serves a higher purpose. I hope you will let us know how it is going. You go, girl! Cathy ” title=”Very Happy” />

[cathycnm]

in reply to: depression #1074698

Hopeful – Yes, are you there?

I have been on antidepressants since my first Graves symptoms. I am still not wanting to go off for fear of the anxiety and depression. I have been on them a year and a half – prior to this, I was off any antidepressant I ever tried within 6 weeks. I am a huge believer in behavioral approaches so try to use time on antidepressants to shift my life and then get off of them. This time it is different. I want to be sure my levels are stable first. I was so irritable – well I really damaged some relationships I cared about during that time. I am surprized I still have a job or a family. I had a psychologist coach me in an exercise about writing about what it would be like (as in how it would be different) if there were less stress from my job (pre Graves diagnosis and just after symptoms started). I thought about it a lot. Came up with the answer. The next question was harder – What could I do to act like this change had already happened? I had just blown up at one of my workplace mentors and almost quit my job. I was hardly sleeping and I knew that was feeding it. Then I remembered my short stint on one antidepressant that helped me sleep and got rid of a lot of the irritability – it had been several years since I had been on it but I thought of it immediately. I made an apt with my PCP who started me on it at my request. Honestly, I got feeling so much better that had my bone scan not been off and my eyes so sensative, I would never have guessed I was as ill as I was with Graves. I honestly don’t know what would have happened if I had not made this small change in myself to create the world I was trying to create at work. Loosing my job and insurance then could have been horrific – and my family had not seen me so off-base in 20 years so I don’t know that they would have been thrilled taking me in at that point.

Another thought on depression – all depression is helplessness of one sort or another. In my case, just taking action to get on antidepressants made me feel less helpless. I did have some control over the situation after all. Depression is such a horrible place – please stay in touch with us. Cathy

[cathycnm]

in reply to: I’d like to start a support group in Alameda County, Calif. #1074602

Brenda – Have you thought of writing the area endos a letter announcing your group. Then follow up with a flyer or cards that they could give to patients who had Graves.

A couple years ago, I was ready to start a support group through the Osteoporosis Foundation. They send a manual on the process that those were the first steps. Then finding someone to donate space and identifying others who wanted to share the leadership responsibilities.

To be honest – I had a couple women who had started similar support groups say discouraging things. Not meaning to stop my efforts – just a good reality check into the amount of work it takes to start something like that here in this rural, western community. At that same time, my job was turning into more hours than I wanted and since I work in healthcare, it seemed maybe it was not going to create balance in my life to start that group. If there were 2 or 3 people willing to help – I would definately still like to do something like that. I say that not to discourage you – just to encourage you to get some others involved on the ground floor of getting it started. The endos may know of others who have had interest in starting groups, too. Good luck – what a gift that would be for your community.

[cathycnm]

in reply to: I would like to introduce myself #1074619

Bobbi – Interesting on Jake and being a warrior. Years ago, when I was going through divorce, my psychologist suggested the Dan Millman book "peaceful warrior" to help me stop talking like a victim. Still slide back sometimes – my family of origen were not good teachers. The more I grow and learn about resilience – the more I realize internal talk matters. I find there is always room for my own growth in this area. Cathy

[cathycnm]

in reply to: I would like to introduce myself #1074617

Hey Storm – Welcome! How interesting on the UK.

I don’t know how to answer your question on how hard to push. Your body needs to heal – but sometimes just laying around can trigger depression and that does not help the healing process either. Maybe the others will have some other ideas – I pushed until I got tired – then I went to bed or took a nap when I could. I made sure I got 8 hours of sleep a night, etc.

I also wanted to comment on the whole idea of "suffering" versus "being a survivor" or even better "being on a healing journey." I am saying that primarily to myself. When I was at my worst – I found myself falling into a victim trap with how I spoke about Graves. It was a turn off and I am a leader in my community. I had to approach it differently if I wanted people to listen. I am trying to reframe it as a journey that is part of my life. It helps me to do that – I feel less helpless and depressed – and it seems like others are more engaged with me when I frame it like that, too. Then again, maybe I am being way too American with that ” title=”Smile” /> Anyway – welcome – I am so glad you are here and would love to hear more about your healthcare system there! Cathy

[cathycnm]

in reply to: decongestants #1074716

Mickey – I use clariton when this acts up, as well – I take it once a day. I used benedryl for sleep for years when on shifts – but now I have other meds for that so don’t want to take something else that makes me sleep. I am finding the zican OK – really curous (over time) to see if it can help this without all the side effects of sudafed. I like that it is more homeopathic than a stimulant. Sounds like it holds up in the research – so how great to have something to make these illnesses pass faster until my immune system heals.

I got my TSH yesterday – down to 1.37 from 3.86 last time. He said that he wondered if some of my thyroid is still functioning – because I am on a very low dose (112 micrograms) now. He had expected to have to increase it – but actually talked about decreasing it a little. But we decided I was well and happy right now so to see what it did in 3 months. But being on the low side may help explain the fast heart rate I got with sudafed. It is a journey – Fasten your seatbelts! ” title=”Neutral” />

[cathycnm]

in reply to: decongestants #1074713

Mickey – I forgot to mention that I am on antibiotics for the infection. However, doctors are steering away from antibiotics more and more now if the infection is mild because common use of antibiotics creates the "super bugs" like MRSA.

I am on decongestants primarily for the eustachian tube dysfunction – my ear gets blocked for weeks every time I get a cold or drive over a pass or have allergies. It leads to tooth pain and probably was one factor in developing this infection. So, if I can keep my ears open – I can stay off antibiotics as much as possible. I was delighted to find out zicam is something I can use to help keep my eustachian tube open throughout the year. Much better than having to use sudafed for me.

I am curious to see where my TSH is (she drew it yesterday) – my pulse is back down off the sudafed. Cathy

[cathycnm]

in reply to: Normal At Last! There IS hope! #1074674

Kilikat – Oh my, I am reminded that I have had to eat so much fiber just to stay semi regular my whole life. No change with Graves. I am now – for the first time in my life – "regular". Maybe it is the diuretic I take for my calcium balance – or maybe it is the flaxseed I am using for my cholesterol. Or just drinking way more fluid since starting the diuretic. But it is of note that it is timed pretty well with about 1-2 weeks post RAI. So I gained weight and stayed constipated with Graves. Go figure!

[cathycnm]

in reply to: Looking for stories #1074642

Have you thought about asking area endos if you could post something about this in your office. Go where the patients are!!! Especially if you have someone who has a large adolescent practice. I think this board is a great place to look, also. Cathy

[cathycnm]

in reply to: Need Womans Advice #1074656

Sara – As a nurse-midwife and women’s health practitioner, I learned to be an advocate of calling this fibrocystic breast changes. It is not a disease as such. It is hormonal, for sure. It can also be agravated by caffeine.

Is it directly related to thyroid – not directly. But may be a first cousin. Because having a whacked out thyroid often leads to irregular cycles. That means your levels of estrogen and progesterone are not doing the nicely syncronized dance they usually do each month. So – your estrogen may be higher for longer peroids of time than normal – triggering this.

I don’t know how you feel about birth control pills – but you might ask your endo about this. It would get your cycle back into a regular pattern. It was the most common thing we did for fibrocystic changes when I was practicing – though I never treated this at the same time as Graves – so your endo would know more.

Other than that – eliminating caffeine, eating more green leafy veggies and some sort of regular exercise (again, check with your endo on that) were the old stand-bys a couple years ago. Good luck – let us know. I am curious. Cathy

[cathycnm]

in reply to: Looking for stories #1074640

Gemsile – Good for you! If you are willing to share what you make, I would love a copy for my nursing program. We have to enlighten others. Thanks for doing this – it will benefit all of us! ” title=”Very Happy” />

[cathycnm]

in reply to: I am writing to Tom Daschle… #1074703

I am fortunate to have a great HMO – they rarely blink at any of this stuff. And they have a great health risk assessment program with management plans. My only wish was more focus on common womens illnesses – thyroid and osteoporosis. However – this year they did start offering TSHs as part of the health screening labs and the questionaire does now ask about osteoporosis.

As a physician once pointed out to me – the US is the only country in the world with a healthcare industry. Others have healthcare systems. The benefits are that we develop things sooner because companies can sell winning drugs or equipement for a profit. The downside is all the insurance red tape. I would definately follow up with them. Cathy

[cathycnm]

in reply to: decongestants #1074711

Mickey and other cold sufferers – I saw my PCP today and when she brought up sudafed – I told her I was getting a pulse of 90-100 an hour or two later and lasted for a couple hours. You know – they get in their routine and she forgot I just had my first normal TSH 2 months ago so was hardly stable. She agreed. She suggested the new med – Zicam – which is over the counter and totally safe with thyroid. It works differently and actually claims to shorten the duration of the cold. So – I switched.

Of course – about the time I posted my original question – I began to get a sinus infection. I flew home yesterday and it got way worse. Talk about green snot!!!! So, I guess I will be giving the Zicam a run for its money!!! I will let you know how it works.

BTW – there are lots of choices with the Zicam with desolving pills and the nasal swabs. Both allergy and cold. I picked cold for now but may switch to allergy once I am over the infection, as I think that is what is the trigger for my eustachian tube deal. The upside is I now have the opportunity to experience this new med and without Graves I would still be taking old sudafed. Maybe it will turn out to be more effective.

This (sinus infection) is definately a trigger for the irritated eyes. Cathy

[cathycnm]

in reply to: decongestants #1074709

Thanks, Bobbi – I will make an apt with my PCP as soon as I return home and I see my endo in less than two weeks. There are some RX meds that work differently than the decongestants but the last time this reared its ugly head I had not been diagnosed yet so I declined the RXs in favor of OTC remedies. Time to rethink that one, I guess. I appreciate your help. I fly home tomorrow so will keep the tube open with very low doses of everything until I can get in. Last TSH was normal but it was the first one post RAI to be normal and only the second TSH post RAI – so to say I am totally stable is jumping the gun a bit.

I will talk to my pharmacist at home, too – I have known him and worked with him for years professionally – always helpful. Cathy

[cathycnm]

in reply to: New here #1074738

Tara – Welcome to the board. It takes time to bounce back – and I am beginning to see from these posts that the longer you are sick before diagnosis the longer the healing phase.

I am a nurse practitioner and my mom had Graves – and I knew little about it before this, really. I agree on the misperceptions. People where I work (nurses with advanced degrees) actually heard "thyroid" and thought I would go get a pill and be fixed. When I had symtoms and could not give my normal amount at work – people got mad. I even sensed that I was not to talk about it to anyone at work – kind of like how girls use to be told not to talk about their periods or something. I honestly think they were just ignorant about how it all works with hyper thyroidism/Graves. The cell healing takes time. It is OK to talk about it. It is also good to focus on the positives in our lives so we can stay more resilient through all of it – and to surround ourselves with supportive friends. It made me realize how important it was for me to be informed and to have clear boundaries about creating a healthy environment for me healing. I think the best people to enlighten others are those who have walked or are walking the path. We know because we live it.

I hope you get feeling better soon. I felt aweful for 2 months after RAI until I started my replacement thyroid. I have never felt so aweful for such a long time in my life – I can empathize with anyone going through that. I assume you let your doctor know how you are feeling? They may want to do more labs to see where you are at. Cathy ” title=”Smile” />

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