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belldandy – Those are all side effects. Talk to your doctor and don’t go off without them instructing you on that first. Going off cold turkey can through your own adrenals into havoc and that can be very serious. Let us know. Cathy
Dianne – Oh, I wish I could come to the conference. With a very full time job and 1/2 time graduate school and a trip back to campus (accross the US) this fall, I just can’t. My plan is to get much more involved with NGDF once I finish school in 2010. 20 more months!!!!
Thanks for the info and letting me know I am not alone. These ones I have gotten with Graves have the aura but the headaches are liveable – unlike adolescence. But I would guess whatever it is effecting is taking less of a dive than adolescent ovaries did. I know there are interactions with thyroid and estrogen. If estrogen is being taken as replacement – I believe it lowers thyroid. So, I wonder if when my T4 goes up, if it causes a reduction of estrogen (we menopausal women have a little estrogen left – tends to be stable low dose from the adrenals) – so it would be less of a dip than the menstraul cycle. That in one educated guess. The other has to do with blood sugar – but estrogen also raises blood sugar so if it is low because thyroid is high – it might play a role. Of course – this may be entirely crazy hypothesis.
If you think to ask – would you let me know. My cholesterol is still up and I cannot wean off the antidepressants (cause I feel fine until the thyroid goes off again – but with the stress of work/school, I don’t want to not be on those things). So – my PCP is looking at me like I have become a train wreck in the last 3 years. I am afraid to tell her about the headaches nor do I want more meds – so planning to see what happens with a lower T4 dose and let them know if not better. This board is great, though! Thanks!!! Cathy
in reply to: Do you/did you tell employers about your GD? #1072289I think it depends on if your best or good friends are at work. I told folks cause I needed the time off to radiate – and I also needed to cut hours back some, as I was putting in 80 a week when dxed. The co-workers who were also friends have been my biggest support – offering to help however. Those more distant seemed not to want to talk about it – or to have RAI be an instant cure – or to be angry at me for not working as hard. It made me realize that it really, really matters that your coworkers are friends. I have no local family and my job takes a lot of hours – when I am not working, I am studying in school (on-line). I have dropped out of a lot of things so I can do school so my social support is not great. So, having the support of friends at work matters a lot to me.
The distant folks have come around some. I will never forget my boss (on a distant site) being really mad at me in the fall – she came to a meeting with my staff and let me have it like I was lazy or something. I found out the next day my TSH was 18. I almost quit. Overtime, I see her becoming more empathetic – but I am not sure she really understands. We are all highly educated nurses. I don’t know that it has to do with knowledge about Graves as much as knowing people at a deep enough level to feel trust and compassion. C
in reply to: Do you/did you tell employers about your GD? #1072285Dear hwalter – I don’t think we drive insurance costs up that much. I have been with two employers who increased premiums due to employee healthcare costs. One was a nursing dept at a major university and it was about 5 people who needed open heart surgery in one year. At another employer – it was ER visits – which are a huge cost. Graves is not that expensive in the course of things. My osteoporosis med is about 10K a year – plus vit D levels a few times a year which are over $250 a pop. The Graves is cheep in comparison – thyroid replacement is inexpensive, TSHs are reasonible and I am not on phone consult status with my endo – my PCP is ordering the tests and FAXing him results (he lives 1.5 hours away). I can see if the Graves is in crisis and folks have to use the ER a lot the cost being high. But I don’t think it is a high end cost disease. We are an aging population so any employer who thinks they are not going to have some rising insurance costs has not looked at demographics.
I told my employer – I don’t know if the result was good or bad. I think you just have to decide what is right for you. C
Ski – I agree – the US system needs some real improvement. I practiced as a provider for years and I never got any kick backs from pharm companies other than some nice lunches while they sold us on their newest product. Also – referring for procedures never benefited my practice. That money all goes to the facility you refer to – there is no reward to the provider (monetary) for referring to one facility over another. However, most times the privider must be on-staff at the hospital where they order procedures. It is a ton of work to be approved to be on-staff and to meet ongoing requirements so most providers are not on staff at huge #s of hospitals. Kick backs are illegal and I honestly never saw that happening.
I think our system is medicine focused – look at all the ads on TV. We want quick answers and quick fix pills – rather than taking the long-cuts in our lives. America has a healthcare industry – which means we get the latest techno and drugs faster than other countries. Other countries have healthcare systems – which are less money focused. The money is the "carrot" for the tech. I am not sure which is better, really. An aquaintance of mine who is an HCA physician wrote a book called "Sick patients, sicker system" that has some interesting research on the topic.
I chose RAI because of my pre-existing osteoporosis – I did a lot of reading and going hyper again – even briefly – could set me back quickly in my treatment. Everything I read said if you already have osteoporosis that RAI is the safest option for the bones. And so I am glad I had that option. Without the bone issue, I would have done meds for sure. Cathy
in reply to: Encouragement for the newly diagnosed #1072297Apostriphe – I am on a similar curve – I just went hypo sooner (I still think the low iodine diet for 3.5 weeks first may have been a factor). I went on replacement in October. Now, I am high with my T4 again and symptomatic (like when I first started getting symptoms). So, we are in process with tweaking it down. I appreciate the encouragement. Hypo was awful – like a wooden doll with a migraine. Hyper is just a state of agitation for me which I also hate but I can keep up with my work – it is hard on relationships, though. Each time the ping – pongs with the thyroid – it gets less and less out of range before we adjust it back. Soon, hoping that the ball just stays put. C
in reply to: T4…Confusion. #1072324You are most welcome. I wish you well on your healing journey!
in reply to: T4…Confusion. #1072322Enough – you are correct on the T3 and T4. Thyroid hormone binds to protein in our blood and is "bound". The thyroid hormone that is not bound to protein is "free" and is the most active in our systems. The answer to your question on why your doc measures T4 may rest with your lab. Some labs report a total T4 (free and bound). T4 is used sometimes to monitor replacement.
I just posted this on another thread – I just found out my TSH is normal but I feel hyperthyroid. My PCP checked a T4 and it is elevated. TSH, however, it the usual way to monitor replacement (not T 4) because TSH is more sensitive.
Today I am feeling better about feeling worse!!!! I have felt "hyper T" for the last couple months – moody, irritable, borderline depressed, achy theigh muscle. TSH last week 1.8 – my PCP decided to check a T4 after I told her I thought I was hyper again – The result came back slightly above normal limits and would explain a few things!!! She has a call into my endo to back the dosage off a bit. Holy cow, batman – I thought it my thyroid and felt dejected when the TSH was normal. I was sitting here blaming my poor resilience skills – which are normally great. I knew something was up when I cried for 3 days after getting a B on my last pharmacology test and got really mad at my cats for breaking a plant pot. And my muscle started to hurt on my walks everyday.
Positive – I trust my intuitions about what is going on with me more and I am more assertive with my physicians! C
in reply to: PREGNANCY, HELP!!! #1072326Alice – I don’t have tons of time but I will tell you that I was a practicing certified nurse midwife for years and "caught" plenty of babys from women with thyroid disease. Pregnancy changes thyroid requirements – so expect more frequent blood tests and some dosage changes. It if far better that you had this treated before pregnancy then having hyperthyroid crisis in the middle of your pregnancy. Follow closely with your OB provider and endo. I managed many thyroid OB patients during my years of practice – and always co-managed with a competent OB-Gyn. Congratulations!!!! Cathy
Interesting poll – and a good focus for resilience.
I am having a challenge at work – my cholesterol is still up even with my TSH normal. I have been in and out of depression since this hit – not bad but way NOT ME. I am having migraines for the first time since my first child (now 30) was born – started 5 days after RAI so I have to believe there is some connection. My work is stressful and not real supporting – though it is on the upswing slowely, ever so slowly. I feel sad and sick too much right now – not me. I am a happy-go-lucky optimist.
I do feel very grateful that I am usually happier. Feeling "not myself" for the last 1-2 years has helped me realize how aweful it would be if I had major depressive disorder or worse heart problems. I love my daily walks. I enjoy this board. I have learned a lot about thyroid disease that I share with my nursing students. I value my health. My PCP told me on Monday that my health had gone from exemplary to mediocre in 2-3 years – from job stress. I guess it is helping me set priorities to get back to exemplary in the next year or two. C
in reply to: Could this be EYE DISEASE????? #1072435Lin – When I thought I was having symptoms of eye disease, I asked for a referral to an opthamologist. I knew I was already color blind (from birth) and so one sign of early vision loss was not going to be accurate to me. I made sure he knew the purpose of my visit was that I had Graves and wanted to be sure my eyes were staying healthy. It was on my referral and I wrote it again on the history I filled out. I still remember the doc coming in and starting down the routine history. He was maybe on question #2 when the Graves caught his eye. He stopped immediately, made eye contact and said "oh, you have Graves disease." It was like we connected on the purpose of my visit. I go every 6 months now to keep an eye on things
– he is doing exams specific to Graves to make sure I am not developing anything abnormal. So – I would suggest calling your opthamalogist and setting up an apt that is all about Graves. If we don’t red flag it, I think we get put through routine exams but no one puts together the thyroid issues. Good luck – let us know!in reply to: Synthroid -questions…. #1072446Mickey – Synthroid is actually preferred to armor thyroid by the pharmacy folks. Armor is ground animal thyroid so the dosage is harder to control. Our bodies convert the T4 to T3 anyway – so it is not like we are missing anything.
There has been mixed findings on using different brands of thyroid. The problem is that our TSH is so sensitive that even a small difference in the preparation of the med might be enough to throw that out of kilter. And while the dosages are the same – the other ingrediants can make a difference. Some research says there is a difference and others does not. Until they can nail this down – it is generally recommended not to change brands – or if you do to monitor TSH more frequently. The problem with generics is sometimes they may change brands on those and cause TSH to fluxuate. So – I have not used the web pharmacies but I know sometimes they market things as the brand name that are not. I recently heard of a company that is selling an IUD (web-based company not in the US) and saying it is generic paraguard but it is not!!! It has very different specs and is not FDA approved. So, I have no idea on thyroid but hearing that made me leary. If you do use an online pharmacy – be sure they are reputable. I know my insurance company has an online company they work with and I would be comfortable with that.
As far as weight – it is what we take in vs what we burn off. When hypo (lovely, isn’t it?) everything slows down and we burn less. Once our levels are normal again – then we burn at the normal rate again. Of course – if we are not getting enough exercise or eating too much – then that would keep the excess weight on. And women’s metabolisms slow down some after menopause – I think our average BMI peaks at about age 55. Welcome to the board – let us know how it goes!
in reply to: Do I need to go on a low iodine diet for my GD? #1072462Sharie – My understanding of LID (low iodine diets) is that they are primarily used before scans or treatments with radioactive iodine. In a sense this is to starve the thyroid so it wants to uptake as much of the radioactive material as possible during the scan/treatment. My endo is old school and had me on the LID for 2 weeks prior to my scan (yes, no milk but I got sort of attached to the coconut milk in cans!). It was hard – my daughter found a great cookbook for LID and we did have to shop totally differently. I had the scan and was at 37% on the uptake – I saw my endo the day of the scan and he said he required 2 weeks of LID before treatment, too, so if I stayed on the diet, I could get the treatment the next week. So – more bananas and salt free almond butter for lunch (actually, tastey). Then – he had me stay on it 5 more days after treatment. My daughter and I laugh that the diet must have worked cause I was way hypo 5 weeks later!!!
I learned a lot from the cookbook – it was mostly for those with thyroid cancer, when dosing is important and so the LID is essential. From this board – I don’t think it is that routine to require LID before scans and RAI for Graves. I have not heard of it for just routine treatment of hyperthyroidism. Good luck – let us know how it goes and if you have the money – the cookbook is a good investment if your endo requires this. The recepies are good enough that I still use them. Lots of fresh fruits, veggies, no-salt nuts, no-salt meats – I was so hungry for cheese after a month, though!!!! First meal post diet was cheese-filled!
in reply to: Eye exam was nonthreatening #1072533belldandy – Yes, the corticosteriods can increase gastric acid so the best meds are like pepsid – the H2 receptor blockers are often suggested.
I found out my insurance does not need to preauth the punctal plugs – so going in in about two weeks for this.
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