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in reply to: I HATE this disease! #1072588hyperm wrote:Hey thanks.
I agree with what you say – that I don’t want to be pregnant right now and have had 2 miscarriages in the past due to GD. Its not that which is getting to me its the fact I can’t get on with my life. We all have different views on contraception etc.. and perhaps TMI but it was a one off – as feel to unwell for any kind of physical relationship I am sure we agree on the contraception (I dont use any and only used Birth control to control my cycles which didn’t help so I stopped it lol), feeling unsexy and so not in the mood is again part of the disease and your husband understanding will help him know that it’s not that you dont love him or find him attractive ,it’s your hormones konking out oh hell no way am I doing anything. I think labido(feeling of wanting to be intimate with your spouse is the last thing that came back for me. It was hard
I do get up, shower etc… take my little boy to nursery (washses me out) then come home to my baby or go to my mums house. I haven’t got a choice – even though I am so exhausted (like most women ) I really don’t have a choice but I really do feel I am ready to drop. I had a thyroid storm a few months ago and I feel so lowsy and I appreciate all your help and concern – thank you.
Having a storm takes it out of you and having kids does too, prayers and hugs that your energy levels get better as your thyroid levels get better.Its just the frustration of being stuck in a body which can do NOTHING yet I have so much to do! I definitely don’t feel sorry for myself as I am an OT and appreciate what other conditions are out there etc.. and how they effect peoples lives but it doesn’t help when you are in complete adrenal burn out ” title=”Sad” /> However, tomorrow hopefully will be a calmer day. Its just a horrible feeling to see life go on around you and I have to just wait until the day comes were I feel normal. I haven’t pushed my baby in his pram etc… it may seem trivial but to me at the moment these things are really getting to me.
Not trivial at all, it hurts emotionally not to be able to care for out little ones… I didn’t mention this before becasue it wasn’t relevent to having Graves’ disease but I will mention it now.
Back before I married my 1st husband I was bitten by a cat that had rabies, I took the shots they said and I had a very bad reaction to them. Dropped from a good 185 lbs of just getting out of high school and 5’8" and almost all mussel(June 1991), to 128 lbs my wedding day(Nov 1992), I had so many people say how sick I looked and all the make up i wore to cover the illness of being so sick from those stupid shots. I got pregnant in 1994 and had the baby in 1995 and after the birth I bled for 3 years my sister helped me with the baby and with myself. I was useless which is horrible in my eyes since I’m the overbearing motherbear that I am (thus the name mamabear lol). Moms dont get sick, wives dont feel yucky…that is what we are supposed to think but that is just not true, we aren’t super women and break just as fast as anyone else. So when we break we have to be fixed and that is the journey that leads us into so many different places. Some good some bad but in the end I hope the same falls true and that we are all better in some way how ever were able to achieve the feeling good part. Some take meds some do RAI, some do surgery either way the goal is a better life with manageable treatment.Its also upsetting when I hear people tell me they thought I was going to die etc… thats how ill I have been – so I guess perhaps there is a traumatic side to it all and a complete loss of confidence… I was at my GP the other day so more bloods taken which indicate the PTU is finally starting to have an effect but she is keeping a really close eye on me as seemingly the results are still worrying due to the thyroid storm etc…
I don’t blame your dr. for keeping a close eye on you espeically if there is a possibility that you might fall pregnant. Remember to monitor your cycle and understand that GS screws it all up so at any time you can become pregnant.
Did your Dr. say you should be taking Folic Acid? If not speak to her just in case you do become pregnant at least you are already taking Folic Acid which is good for baby.I really appreciate all your honesty. I waited 2 years to have my youngest after the m/c etc.. so am truly grateful but its just the fact like you say – everyone else can whoooop and celebrate the news of being pregnant whereas I am worrying about m/c or what my levels will be etc.. I am having the op as soon as they can get it under control as i have had enough of this thyroid controlling my life for the last 4 years. I suppose in a way I am grieving for what I once was – keep fit fanatic, helping my parents and an elderly aunt etc… to becoming the patient. I guess thats where part of the prayer comes in " God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.
" God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.Hopefully this will make you laugh…
" God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know when to keep my mouth shut and not smack someone in the mouth on my bad days."
You need to mourn your loss not only of your baby but for the anger that you have that this disease caused that m/c. Don’t think of the person that might have cancer right now and that you feel you need to suck it up because there are less fortunate people out there. Right now you need to think of you and your losses, you have lost something deeply important and the reason is most likely GS in your eyes. You are weak and can’t do much of anything else and you need to mourn the person you once were. It’s ok to mourn these things, if you don’t you can’t move forward. Of course it’s ok to feel that you are lucky because there are others out there worse off than you but sometimes it’s ok to feel that you don’t want this and didn’t ask for it and want it gone. Say it out loud, say it like you mean it and say that it stinks and that you want your life back…then take babysteps to get to your goal.so much sadness I am sure when you can’t do the things you wish to, I pray that in the end your life is full of being exhausted due to many more babies and a well controlled thyroid. ” title=”Very Happy” />
Gosh I tell my patients that – give into the fatigue and then start to bring yourself out of it – like when your car overheats.. and here I am unable to take that advice.
thanks once again – you are very kind to write such a long post to a luney like me.
M xx
Omoplata,
There are others on here that will be able to explain in great detail the answers to your questions. I just wanted to say welcome and be patient as some of them work and dont’ come around till later.Hoping that you find the things you need and work on healing.
in reply to: I HATE this disease! #1072586I would like to say this first… I know you wont want to hear it but having had to wait it out myself I will tell you the same thing.
You DO NOT want to be pregnant with your Thyroid levels not fixed first. Your two boys are whom you have right now in your life and putting yourself at risk will not help them have a good life and a mom in their future. Please I beg you not to try for children during this time, I am surrprised that your Dr. didn’t advise against it or even say that you should protection to help ensure that you dont get pregnant.
GD and pregnancy doesn’t mix especially if you are feeling all of these feelings and not feeling well. Add a pregnancy to that and you have a poor pregnancy, two little boys who have no clue what is going on and the possibility of a m/c.
I wish I could just take a cool washcloth and wipe your face for you and wet your hair down and say everything is going to be ok. Since I can’t be there to do that you will have to do it. Go wash your face with cold water….go on now i’ll wait…………………….. yes i meant it so go ahead i’m not going anywhere……………. ……………….. Ok now that your face is wiped off take a deep breathe…yep go ahead….Breathe in really deep then let it out…. OK now go to the mirror and look at your face…yes I’ll be waiting here go ahead..Don’t even think of reading this whole thing then going and doing it…So go now and go look at yourself in the mirror for a minute and laugh that I am making you do this and then come back to the computer.
Ok so what did you see in the mirror? Yes you saw a 28 year old that doesn’t have any makeup on and it looks like someone erased her face because she is as pale as a banana peal. Yep I said it you can keep the look of shock on your face for a minute till that soaks in. Are you laughing yet, you should be?
Ok so since you feel like crap we tend as females to look the way we feel. Yes I do the same thing. Having a routine in the morning will help you focus on your day instead of sitting around feeling sorry for the things you can not do. This is not a lecture…. this is advice from someone who use to sit around feeling sorry for myself and realized wow that I needed to do something about it and like you said be thankful for what I already have. Not saying that wanting more is horrible because it isn’t. Having little babies all around you are wonderful but right now you can not and should not try to get pregnant because you know the end result will be bad and why put yourself through that? Your TSH level and other levels need to be in a good range to get pregnant anyway, GS causes temporary infertility but you can also still get pregnant and that would be so bad for you and baby.
Coming to terms with healing yourself first then thinking of getting pregnant later on will be healthier for you. I know you might think that you are too old or don’t want to be older when you have your next one but honestly I am 35 and have 4 , last one was when I was 32. My mom was very young(17 with sister and 18 with me) when she has us and my set was that I was too old to have more. Then i started talking to old friends from school who are just starting their families at 35. I was shocked, I didn’t want to be older but things happen for a reason.
Wash your face and put your makeup on, looking good makes you feel good and vise versa. Sitting around in your pj’s all day wont help you either. Get up like you have a job if you stay at home with the kids. The kids are your job and so is the house, get up and take a shower and get ready to work. Even if you still have to rest during the day you are still up and dressed and ready to go if you need to. Same with the kids, get them ready to go at a moments notice.
Just having toddlers at home to begin with is hard, add GS to it and it’s overload. Yell and vent when you need dont keep it in. You did a great job venting on here. You are not alone. I remember the anger of not being able to get pregnant or that I wasn’t supposed to and everyone around me(sister) was getting pregnant. My thoughts were why them and why do i have this and what the hell is wrong with me and why why why… Once I got over my pitty party which I thought I did a great job of having for myself , I focused on kicking Graves’ Disease’s butt and if I come out of remission again I’ll kick it’s butt again and again and again. Yep that’s right, I feel that if you don’t know what is wrong with you than you can’t kick it’s butt. So you have the best thing going for you, you know what the issue is so you can start with knowing what it is and taking baby steps to help heal then think about the next baby you would like have and in the meantime enjoy the ones that you have (and yes in the middle of all of this you can still have a bad day and feel like the whole world is crashing in on you).
Wanting something so much, like having a child hurts when something like a disease dictates when you can have it.
You need to heal, let the medicine help you overcome this and put your body back to where it will be healthy. Let your MIL and husband help you as much as they are able to.
If he needs to come on here and talk about this as well let him, he might not understand what is happening to you and might be so mad that he can’t do anything about it. He might lash out in anger that you aren’t doing what you should be doing in the house but it’s not that he is mad at you, he’s mad at the Graves’ and being a man they have to fix things but he is so frustrated because he can’t fix this.
Take time for yourself and him.
Take time for yourself…………you need it and are desperate for it so just do it.
Figure out when you feel at your best then ask someone to help with the kids while you go for a walk and get the sun on your face. Or just the daylight on your face, you have to get out of the house, drag your butt off the couch and go sit on the stoop/porch for 10 minutes a day.I’m not saying don’t feel the way you do, you have a right to be angry/sad/happy… I’m saying that your babies need you now, your husband needs a healthy wife and mother and you need to be strong for your children that are on this earth now. It took a while for me to figure that out but I guess time and age help you put things into perspective and where priorities are. At the time I was mad as hell for not being able to do what I wanted, but I had a huge support system in my husband and I still do with him because having 4 kids is a big thing even though my GS is in remission.
Keeping talking about it and getting it out.
((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))))))))))))))))in reply to: Mea culpa … I didn’t introduce myself. #1072591belldandy112 wrote:The only vice that I haven’t given up is my morning coffee. You can have my Starbucks when you pry it out of my shaking, sweaty hands. ” title=”Smile” />
That was one of the funniest lines I have heard when it comes to Graves’ Disease!!!!!Got rid of the unsupportive husband. <
That one is just priceless!!! (although I am truly sorry that you had to go through that as well)Welcome and I hope you find it wonderful here. Oh and love the latin.
in reply to: Surgery in Two Days #1072673Just wanted to say that we will be thinking of you tomorrow.
Robin, just wanted to say.. was it the PTU that was making you ill or the fact that your immune system was low and thus susceptible for getting sick faster instead of our naturally good healthy immune system being able to combat a cold fast before we get too sick from it? (i am just curious because I was on PTU and didn’t see a difference with getting sick more than usual). any info would great to hear. Thanks
AGAIN thinking of you and hoping all goes well tomorrow!!!!!!!!!!!!
in reply to: Graves disease in Males #1073306Aravindh,
Although I no longer live in that area, I am aware of jersey city and yes I agree, NYC is a great place to get treatment for Graves’ disease.
Good luck you are doing great and have a great dr. on board if he is hopeful of you going into remission. That dr. I would say is a keeper for now since he is looking at the whole picture and not just saying oh have your thyroid removed. What a great out look on your health he has and I like that with any dr.
prayers that this keep going well for you.in reply to: Question for 12 month post RAI/ Surgery people #1072646Ruby,
here is a bigger hug for you .Being sick and not knowing what to do and wanting answers right away and not getting them or not getting enough answers is hard on the brain.
Being tired and angry and asking why the hell is this happening to me and why can’t i just fix this and move on can be one of the toughest things to overcome.Your last post screams that you are in need of support and you have come to the right place. It is true not all of us come on here often some have more time than others do. When I come on it’s usually for a few days than I am gone again until I stop in again.
When you have this going on in your life no one seems to understand what you are going through and how to help you and it makes you want to scream, cry and break someones face all in the same moment. It is ok to be positive and try to be calm but it is also ok to be angry and have a bad day. Don’t try to be superwoman if you can help it.
If you need to scream please PM me, my PM box is always open to screaming/venting and cursing is always aloud in there.have you already done RAI and are 12months post and starting to feel bad ? (your post doesn’t say if you have done this or not that is why I am asking)
((((((((((GenuinRudy)))))))))))))
Withoutabox,
I just reread your first post and only now realized what you are saying. Forgive me it takes a few tries at reading something to get the comprehension. lol
You asked for support/stories… well I was looking for something I wrote a while back but couldn’t find it so I am going to type something similar to you and hope that this helps.
Just a note to the Mods/Facilitators in case I um say a word I shouldn’t..ya know just in case I slip. ” title=”Wink” /> <—trying to make everyone laugh!!!I will TRY to keep this short and to the point, but that never happens so get your tea ready before sitting for this post.
I’m 35 right now.
Active kid, dealt with a lot of stuff during childhood(stepfather and mom fighting all the time…longer story but I will save you from all the details).Athletic in High School and very very hyper. Always bouncing around and giddy. Naturally everyone laughed because I was blond so they said well she was a ditz. Eh oh well I guess I could have been called worse. People knew me as being a beast(Thin but built due to lifting weights).
Senior year I was my heaviest weight but still thin and very muscular. Going through stuff at home still
At about 18 yrs old mom made me go to Gyno for a thyroid checkup because she said I must be hyper. Bloods were normal.
Got married at 19 and got pregnant at 20, baby at 21(1995). By the time baby was 7months old I left my then husband.
1996 Met an old flame and dated him(ex and I were dealing with lawyer nonsense then finally we sat down and worked out things we wanted and told the lawyers and are friends now).
Boring things in between this part…Skip to 2000 Boyfriend and I decide to have children so we get married in summer of 2000.Nov 2000 I wind up with the Flu (we have come to find that that is what my trigger was and caused the Graves’ disease to come out and say hello).
By Feb 2001 I went to dr. and found out my TSH was 0.03, went to and Endo who said RAI asap since I wanted to have a baby.
DH and I went to the Radiologist who said don’t do it, look at other options.So we did and told the Endo no I wasn’t going to do this and that he should treat me with PTU since my sister was currently pregnant with her #2 and I had son and didn’t want to be away from anyone. Endo said NO. So we said goodbye to him. ” title=”Very Happy” />
I found another dr. who was a single dr. in his own practice and said that my Graves at this moment was mild and to try PTU, he didn’t guarantee anything though and said it could take months to get TSH to be normal. I said fine and started taking the PTU in July 01′. During this time I was seeing an RE(Reproductive Endocrinologist) who knew I was trying for a baby but was giving us a run a round about things.
By Oct 01′ I was within normal range. Dr. was pleased that it only took a few months to achieve it so we were waiting for RE to say go for it. Well he turned out to be a jerk and dh and I had a few words with him.
Jan 02′ we saw another RE she was great she tested me to find that due to Low TSH wasn’t able to conceive on my own. My eggs were poor(estrogen levels were bad during ovulation). We tried with some medicine to see if that would help but it didn’t the next month we did along with another procedure and that worked. She put me on progesterone to help not miscarry as well since this was an assisted pregnancy she didn’t want to take a risk of m/c.
My regular Endo was thrilled and by the time i was 3 months pregnant my levels were going to high and he took me off the PTU for fear of a miscarriage. I did fine without it because the pregnancy helped keep me at my levels. Had baby in beginning of 03′.Then we thought it would take a long time to get pregnant again so when baby was 5months old we started to try again with the RE (yes I was still in "remission") and got pregnant when #2 was 10months old. Stuff went on in between but again not boring anyone with details. It was hard to do but we got where we wanted to be.
Had #3 Summer of 04′ and it was great.12/31/04 for News Years eve we went to family’s house for a party and #2 (he was only 22months old at the time) wound up getting Rotavirus and so did I. Let me tell you that was not fun at all. 6 weeks later I felt "funny" and wound up having the startings of a Thyroid Storm. Saw dr. in Feb 05′ and she said get to endo right away but since I was on a different insurance company and my great Endo retired I had to find another one. I did and I hated him. He said "she is fine" and my general dr. said no she isn’t her tsh is 0.01 and her T4 and T3 are out of control. Treat her now! (my general dr’s are russian and indian and they are no nonsense dr’s it was awesome to see them in action).
Well he treated me with PTU but you could see he didn’t want to. What a jerk.Was on PTU for a few months and levels were great so went off medicine during which time I tried a different dr. and OMG he was worse. But I got off the PTU and 7months later my levels were still great and I only needed to have my general dr. check me with no Endo involoved at that point. UNTIL……….. I wound up pregnant on my own with no help from the RE!!! It was wonderful to know that my body was healing and I could do this on my own. But we had #1,#2,#3 who was a terror child and well since I was pregnant my general dr. said I had to have an Endo’s care just in case I go out of remission during this pregnancy. I was mad because I knew my ins. would only take that jerk I didn’t like in the first place that put me on the PTU but didn’t want to. Crap crap crap…
Ok so I saw him and with no complications during my pregnancy I didn’t have to deal with him and his nonsense. All was well and baby arrived summer of 06′.She was a peach and at the end of Nov 06′ I wound up sick with a virus and by Feb 07′ I felt "funny" again and went to him and my TSH level was just borderline and I felt it. I said my body likes it when I am above 1.0 but he said that I shoudl go on Tapazole and that at my age I shouldn’t have anymore kids because I already had 4 and blah blah blah…well needless to say I told him to go ya know…(enter bad things here lol).
I went on a search to find the Retired dr. that I had gone to that I loved, i knew he had had a colleague, so I found her and she was in practice with another woman who I wound up seeing. Now during my waiting time to see her I dosed myself with low dose PTU (my general dr. knew this) and hoped for the best. Since it was only the TSH that was off this time we did what the original dr. did (the dr. I think is great), so we took his dose and used that for now till I was able to get to my appt.. By the time my appt. came I told her what happened and that there was no way I would go to that dr. again and that I had hoped that she would understand that she woulnd’t be making a lot of money off of me but had hoped that she was in the business for the right reasons. She was like the dose seems fine and after she checked my blood work I was within range and not feeling any funny stuff at all. This was in april that it showed fine. by May I went off of the meds and by june she said i was still fine and check again in 8 weeks. I was normal and have been ever since.
People can go in and out of remissions with complications or without complications. I know the risks and so does my dh and we both agree that right now this is the best course of action for me. Had I not taken the meds well or not stay in remissions for long periods of time I might think differently but this is what is best for me since I can stay in remission for 5-10 more years without having to deal with PTU. OR maybe I wont be that lucky but I would personally rather deal with this then go through RAI and have to deal with HYpo.
If and when I have to do RAI or something else then I’ll deal with it or if my body goes into Hypo by itself then I’ll deal with that then too.I call myself one of the lucky ones because although I went through the whole infertile for a time, hair falling out, feeling of anger and depression and being sick.
In a nutshell , our hormones during our mensus sucks. It’s bad enough that we have to deal with feeling fat and bloated and we have cramps and people wont leave us alone and or shut the hell up THEN add that we have Graves’ to the mix all of that equals the "crazies" is what we call them in our house.Anytime you feel like you are loosing it call a friend or family member, call your dr. if you have. Sometimes just letting it and screaming into a pillow helps too. Vent here if you need to.
I hope this helps you to know that there are people out there that have taken PTU and aren’t on it anymore(right now) and are still in remission and doing well. And I am willing to stay this way until it no longer works for me.
Prayers
in reply to: new member – please help!! #1072619Alice, HERE IS A BIG HUG
Here is a link on tips for skin/hair/cold’s and stuff like that to help you especial since you are a mom as well and germs are everywhere.
YOU WILL BE OK, but it will take time..babysteps! And don’t be the hero mom like most of us tried or try to be. It’s called K.I.S.S. (Keep It Simple Silly). That means if you are feeling like crap stop what you are doing and ask for help or just lay down next to your toddler and relax. Lay with child while they are sleeping and stroke their hair, it will help you relax.
Your medicine needs to be adjusted to the right dose in order to feel better, please make sure you contact your dr. and stay with your appointments so that the right dose is achieved. I am sure others will have more advice but this is what I can offer.
You are worth waiting for so be patient for yourself and know that the bottom line is you feeling better and this is just another hump in the road and that you will overcome this too. When you feel depressed talk to your husband/family member/priest,minister or rabbi/or talk to your dr. about how you are feeling…never keep the issues you are feeling inside let them out. If you are upset with your child then ask your husband or family member to watch them and walk away and take a few minutes to yourself.
Please see your eye dr. as well and get a full check up as thyroid eye disease is different than Graves disease. So make sure that your eyes are healthy as well with regular check ups. My eye dr. wanted to see me every 6months when I was out of remission for graves just to make sure that my eyes were ok as well and continue to be ok. I do get checked often even in remission because my eye dr. is a pain in the butt. lol
Hugs and prayers to your for your this journey that you are taking.
in reply to: Question for 12 month post RAI/ Surgery people #1072641I didn’t have RAI but wanted to give ya’ll a big hug, just seems to be needed after reading the posts. ” title=”Very Happy” />
in reply to: Graves disease in Males #1073303"Aravindh":u1ma9o0t wrote:Dear SkiMaamaBear,
Thank you very much. Today I went to the General Physician for giving the blood test. He took the blood this time and he gave me the results of the last test. The Free Thyroxine has come to 1.61 (normal range 0.93 and 1.7 ng/dl). But the TSH is still low. It is 0.010 (Normal range of 0.27-4.2 uIU/mL). He has asked me to be under the same medication of Tapazole 20 mg daily (10+10) and one Inderal L A per day. He also adivsed me to take a tablet called as Lotrel 30mg per day as the Blood presure was a little bit High (150/90) . Hope this comes down in due course. These are the updates from me now from the General Physician. The next Endocrinologist’s appointment is on this Friday and he said that he would fax over the latest blood test results (that were taken today) to him. I am actually starting to feel a lot better. I am having only a little bit of dizziness, little shortness of breath, little bit of gas trouble.. Hope this goes away too. Hoping to see the old and normal Aravindh in days to come.. Thanking you and Best Regards Aravindh Natarajan.[/quote:u1ma9o0t]Aravindh, Good for you to get your results and be a good advocate for yourself. I saw you mentioned NYC, I would like to suggest that you ask the Dr. this friday when you see him that if it is at all possible that you can sign a piece of paper each time you get blood drawn so that the Lab company sends you the lab results directly to your home. And that way you have a clear copy for your records to either put into a spreadsheet or keep just like that in a file in date order. I’m in NJ so I know that NJ requires you sign every time you have blood drawn so I am not sure what NY laws are. You might want to ask him so then you always have it even if he gives you the numbers you know you’ll get a copy in the mail as well.
Graves’ disease is a waiting game slow and steady wins the race. Keep your brain active and try to focus on what you have to do and your work to keep you occupied.
I do hope you told your dr. about your symptoms. Keep him informed that you are still feeling these things even if they are just a little bit.
Just to talk about the gas for a moment…I know how embarrassing that can be but I need to say this. Not sure of your heritage but consuming rice and beans or rice and green leafy vegetables can cause this, Seafood also causes this as well as many Indian and Thai dishes. Although they are all so yummy and just saying it makes me want to go out and eat Indian or even Sushi hmmmm i’m hungry ” title=”Very Happy” /> , the point is is that rice and carbohydrates is a huge factor in the gas problems and Medicine for Graves’ disease doesn’t help the situation. Just a thought for you. I have learned that keep a journal of what I have eaten helped me figure out what the worst offender was and help keep it out of my diet till the TSH levels were better.
I know you are a guy but wanted to comment on this as well…how is skin and hair? Drink plenty of water for your body weight and use cream to keep dry skin from getting worse.
You are doing a great job keep up the good work.
Edited my original post to add something that I used in another post about being sick and tips on keeping house clean
in reply to: Anyone that tried natural methods/diet? #1073674NOTE: I would like to say that what I say here is for the original poster and I am not getting into any conversations regarding "natural methods". I have been in remission for a long time and I only needed low doses of PTU. Anyone that only needs low doses and can stay in remission while on the PTU or off of it is a very lucky person and we do not know what anyone else is going through beyond what we have gone through. It is not up to us to say Western Medicine is better than "natural" unless we have an M.D. at the ending of our name we should not take the responsibility of someone else’s life in our hands. I am a firm believer that just because it worked for one person or even a dozen people that it doesn’t mean the next person will be that lucky. If someone is on medication please do not take it upon yourself to change your dose without your dr knowing it. Thyroid Storm is very real and can cause death so if you take yourself off of your medicine due to anyone saying oh this worked for me you should try it, you are putting your life and your recovery in jeopardy. I am not a moderator here nor am I an online facilitator and I didn’t sleep at a Holiday Inn Express last night ” title=”Very Happy” /> ” title=”Very Happy” /> I am only saying this because I was one of the lucky ones and I took my medicine and became healthier with what I ate. But had I not taken medicine to bring my levels to where they should be my heart rate would have gotten faster and blood pressure higher and I would have wound up being a mother that left her babies behind because I felt that it would go away on it’s own.
Graves’ Disease IS AN Autoimmune Disease, it runs in families and the genes can be passed from one generation to the next and even several people in one generation (My Maternal Uncle, his daughter and myself all have Graves’ disease). There is NO cure for Graves’ disease so saying someone is cured is a wrong statement in my opinion. Being in remission the rest of your life is a better statement because being cured means that you will never get it again which is untrue with Graves’ disease. Just like many other things Graves’ is incurable unless we have found a way to go into our genetic make up and take the genes out that cause it. Please note that with both women and men that have this disease even if you say you are cured that your children or other family members like grand children can get it. So call it what you wish but remember when someone asks you if you ever had a disease please tell them and don’t be like my family and say no no one ever has had it and then find out that many of them do. You can be in remission the rest of your life which would be awesome but know that you can come out of it at any time and be prepared to do what you have to to kick it’s butt all over again.
This is not a note to say that anyone is wrong or right, this is coming from a woman that had it lucky and I am still in remission, I have dosed myself with out an Endocrinologist’s knowledge due to a poor Dr. that thought I would be bullied by him, but my general dr. knew what I was doing and she was ok with it. Dr’s aren’t perfect and we are still learning about things, what we knew 20 years ago is different now because we learned from all the things in the last 20 years. Kids didn’t wear helmets and some got hurt and some were killed from wearing them and some walked away laughing because "it’s just a bicycle and I fell". We know now that helmets do help and people say well I survived riding a bike when I was a kid. But we have to think to ourselves we weren’t the ones that died so how could we know. Antibiotics we learned a lot about, we learned that taking them for a virus does nothing. It doesn’t mean we were dr’s were wrong and they are stupid. It means we learned something about how a virus works and how antibiotics work and the end result is something other than what we thought.
It’s ok to believe in what we want to believe in, having an open mind is great but I see that others are following that they will get off of their meds as well or lower their dose as well is just a problem waiting to happen. TELL Your Dr. what you are doing Please, your life and recovery depends on it.
Just to say that I was asked to have RAI as well and chose not to but again I was lucky and had mild graves at the time, the medicine worked for me and I would gladly take it again when ever I go out of remission.[b:3ccl9nih]The whole purpose of the original posters post was that she was getting sick a lot and wanted to know other ways.
What I would have suggested had I seen it sooner and will suggest now is that cleanliness is best.Here is what I did to help my family overcome the cold bugs that were running rampid in my house for 6 months a couple of years ago and I stick with it and it helps.
EVERYONE that enters the house must wash their hands. YES I said everyone and I mean everyone. Guests are included in this and children especially. Put a bar or liquid soap in the bathroom and make sure they wash. Tell them why you are doing it, they will be more willing to do it if they understand that you have been sick and have a disease that you have to watch your immune system.
I told kids to wash their hands to the tune of the alphebet two times.
I made people take off their shoes and place them by the door before entering into the rest of the house.(this helped keep dirt/dust and animal feces out of the house as well)
Anyone who had a cold or has one was not aloud into the home and if someone in the house had a cold that meant no guests over. NO exceptions.
I opened the windows one day and just cleaned the house from top to bottom, wood floors with vinegar and water and the rest of the house with soapy water and a bleach solution (a little less than disinfectant strength due to everyone was already coughing and didn’t want to upset the esophagus more).
Top to bottom also meant cleaning the toilet handles,rims,floor, bathroom sink handles and soap dispenser as well.
All doorknobs and light switches even the ones you think little ones can’t reach.
The doors themselves because not everyone uses the doorknob and all those germs are on it.
TV remote, and all accessories like DVD and playstation/Xbox and also the actual switch to turn the TV off without using the remote, someone that had a cold could have actually used it and those germs are on there. We don’t think of a lot of places like that that things could be lingering but they do. icky!!
Washing your hands every time you come home from the grocery store or anywhere will help a lot. and having everyone in the family do the same will too.
Taking all toothbrushes and putting them into mouth wash for 30 minutes helps disinfect them as well and saves you money on buying new ones. Do it now and then after the cold is gone as well. Keeps the brushes from getting moldy and from getting bacteria/listeria on them.
I have a lot of bathrooms and a lot of kids so in each bathroom i have soap dispenser and towels, toothbrushes and paste and mouth wash. I keep Lysol wipes in the bathrooms as well high up on a shelf(10 ft high due to toddlers) hidden so I can quickly swipe a bathroom clean when I go up there. Vinegar or ammonia in the toilets daily during a cold will help as well.
And make sure when you use the toilet to flush with the lid down so germs don’t swish up from the flushing of the toilet and end up on the floor.
Take your vitamins as long as the dr says that is ok and keep up on drinking water and stretching(per dr’s ok).
Keep your fingers out of your mouth and don’t wipe your mouth on your sleeve as germs can linger. not saying anyone is a slob but hey we all have done it and we might still do it so being aware that we do it might help to stop it so during a cold we dont put those germs everywhere ” title=”Wink” />
Being sick is never fun and after I had a house full of sick kids and being sick myself for 6months I figured that enough was enough and started making sure that I figured out ways of keeping the illness away or at least to a minimum.
We can’t help it when someone we know comes up to us knowing they have a cold and shakes our hand, I wash my hands a lot and use liquid gel sanitizer when out with people because my trigger for Graves coming out of remission is getting sick so I am extra careful. Although I have gotten sick in the last two years my immune system is strong enough that I have not come out of remission.[/b:3ccl9nih]Good luck with your treatment and remember baby steps and if something is working for you keep it up.
in reply to: Graves disease in Males #1073301Hello and welcome. I just wanted to suggest that taking an antacid with mint flavor might help a bit better. Mint tends to settle the stomach. Peppermint is good in tea form or in antacid as well. I have tried different flavors and even plain and nothing works for me but the ones that are mint flavored.
Good luck on your long journey. Keep asking questions and keep getting your answers. You are doing great and the best thing that you can do is what you are already doing. And that is keeping up with your medicines even though you were getting sick, baby steps is all anyone can take with this disease.
Prayers for your patience and keeping up your strength to get better.
in reply to: Desperately need advice #1072694Just pointing out again that if the dr. says he refuses to treat you just ask him "may I have the reason why you wont treat me while I am trying to look for another Endo?" I ask you this because "I want to make sure that if I wind up in the ER for any reason due to Graves’ that I don’t misquote you on you anything". Yes I would ask this myself and yes I am a very nasty person when it comes to dr’s who think they can bully anyone into doing something they don’t want to do and then not give the proper meds for when they have to wait on another appt., DO NOT feel embarrassed that you will ask him these questions. AND if he dares to tell you some gibberish about big words and how he feels that this is the best course of action and he wont tolerate you being non compliant tell him that HE is the one who gets paid to do his job and if he insists on making his patients become hypo so he can just sit back and collect a ton of money because you have to be in there all the time adjusting your meds he is sadly mistaken.
Yes I have a big mouth and I am a very good advocate for myself. I have surrounded myself, dh and my children with Dr’s who will only do what I ask but also are tough enough to give me a good fight when I am really wrong. They talk to me like I am their equal and that is all I ever ask of them. Be careful with a dr saying that he would do the same for his child or wife/husband as they are telling you to do, because again they are looking at the whole picture here. You being hypo is better in the long run for them and of course their family would do as he/she says since that is what they would believe from him as well. (I am speaking of Endocrinologist’s only about this part other dr’s do tend to say such things as I would do it the same for my child and actually mean it and are trusted on it). Of course this is my opinion only.
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