[mamabear]

in reply to: New on here, parent of child with gd #1064242

KUDOS to you in finding out what is wrong and not just letting the dr. keep saying that!

I’d like to say that Identical twins are very much different, I have known several of them. I want you to know that what I am about to say comes with care and having 4 kids of my own (non of which have graves).
Every child Graves or not, illness or not is very different in their own way. Yes you noticed that she is different in other ways but remember she is still ONLY 3 and every kid can have a tantrum/mood swings and the whole 9 yards! Just because her sister is her twin doesn’t mean that she too will have mood swings, they are individuals and should not be compared to each other. I know it’s hard not to but it’s the truth.
I have two boys 15 yr, 7yr and two girls just turned 6 and 4. Let me tell ya, if my 6 year old girl was my first I would never have had another. I thought she too had graves, she’s always in higher percentile, she is a big girl yet not overweight, she is tall than most girls and at age 5 I use to be asked if she was going into 1st grade. She is a HIGH MAINTENANCE child. Simple as that, wish I were wrong but she is. Once you realize that you have a high maintenance child life gets easier, you know that you can’t treat them the same as the rest. You of course can’t let them get away with things either but at least you know what you are up against. Of course her Graves has something to do with certain things she does but for the most part she is who she is.

I am a VERY bold person(in some cases), if when you say they are identical someone says no they aren’t, I would simply say "yes, as a matter of fact I was there, one of them has Graves’ disease and it causes changes, if you would like to educate yourself with the disease I have a great website for you". Don’t be nasty, a bit of sarcasm wouldn’t hurt but nothing nasty to your tone. You want to inform them that you are not a foot and that they should mind their business. Or it might prompt them to look up Graves, you never know!

Children are more resilient than you think. They both know of your worries because kids sense it in your body language so try to relax and enjoy your babies while you can, they wont be little for long. Soon enough you will be dealing with the lies and them being sneaky … it will be fun! Remind your girls that you love them. My high maintenance girl is fickle she wants a hug but wont hug you for long. The 4 year old girl wants to hug all the time and wont let go of me and it can be quite annoying at times. The boys well they are boys, once 11 hit my 15 yr old didn’t want me and I’m sure the same will happen with my 7 year old. Every child is different even if they have the same genes.
IF you are able to , take out each girl separately once in a while.
Ask grandma to take one so you can spend time with the other.
Ask your husband to watch the one who doesn’t want to do much and go outside and play with the other one, have hubby do some coloring with the one he has.
OR try to get the girls to get active outside, please make sure you check with dr. about the one with graves and make sure that it’s ok for her to play and make sure you know what her pulse rate should be and what to check for.

Most imporantly, relax….. Graves or not they are your girls and they are individuals with different thoughts and looks and actions. The perfect kid to the high maintnance ones…. they are all unique regardless of disease or not. Once you realize that she is who she is it might get easier. Look online and see if you can gets some tips with a child who has a tantrum or has a mood swing.
My one big thing with my 6 yr old was she would have a fit in the store. I was ready for it, knowing I didn’t really need anything but we went anyway. I told her if she screamed or cried we would get back into the car and go home and she would be punished. She screamed and I Left. IT WAS the best thing I ever did. I did it with the others too and it sure helps, them knowing I mean business. You adapt to things but you have to know what you are up against. So she has graves and seh is high maintence…. Now you know and now you can work through it. Most of all your other one knows you love her, tell her know that your sister needs medicine because she has graves disease and it helps her. Not try to think of some other name or lie about it. THEY ARE twins and she already knows something is wrong with her sister, her gut and heart feel it, she probably knew before you did but she is so young that there was no way of telling you. They will always have a bond, jealousy is always going to happen that is just natural. But for now they know you love them both, it’s you who feels bad and that is something you need to work on. Love yourself and know you are doing the best you can!

[mamabear]

in reply to: Optimum level to get pregnant #1064254

yes TTC = Trying To Conceive ” title=”Very Happy” />

[mamabear]

in reply to: Optimum level to get pregnant #1064251

I Can’t stress this enough… any woman who is trying to get pregnant while your thyroid levels aren’t within range and you have an ok from your dr. SHOULD NOT try to conceive UNTIL those levels are within normal range and dr. says OK.

You are wasting your time and your sanity if you continue to TTC while not within normal range. ANY good medical OBGYN would never allow a woman with levels outside of range to ttc.

Thyroid levels that are not within range can cause infertility and if you do get pregnant can cause miscarriage. I have dealt with this as well (but not the miscarriage part). So please try to concentrate on your health and getting your levels proper with the correct dose.

I am not sure why dr’s allow woman who aren’t within range to TTC. Please stop ttc until your levels are within range. I know this is not something you want to hear but it is the truth. I was unable to get pregnant on my own while my levels were out of range, even after they were within range I had been going to a Reproductive Endocrinologist (RE) and I had had my hormone levels and my eggs checked and it is a process and it’s hard and there are drugs that can help along the way with pregnancy AFTER your levels are within range.

If you want to discuss things you can PM me.

How long have you been diagnosed with Graves? How long have you been TTC, what medicines have you used to try to get pregnant, if you have used anything? (like fertility drugs?)

Also just some info on your question: Every woman’s body has a different optinmum level to get pregnant. As long as your levels are within range there is always chance you can get pregnant but if the levels are at the lower end of the range or higher end of the range there is always a chance for miscarriage. Some dr’s like a TSH of 1.0 or 1.5 but again it depends on the dr. and the patient and the patience history. Due to everyone being different there is no "right" thing or perfect number for all. it’s the individual person.

[mamabear]

in reply to: RAI then child. Did I cause this? #1064267

I don’t have much time but wanted to share with you…

My ds15 was about 10 when he started to look chunky. He had always been in the 25% tile sometimes 50%th. When he started to show that he was gaining a bit of celulite on his stomach and of course his face looked chunky (he was always a thin boy), I took him in for thyroid testing and he was fine.
It was just a spurt in his life where it happened.
He has filled out and when he was 12 I again had him checked and one of his levels were high and it was nothing. He had a lot of joint pain and after testing with xrays we found out he was growing. He has large growth plates in his hands and feet and we were told he has a lot more growing and not to expect him to be shorter than 6 feet tall ! LOL

He is thin and works out and has a lot of energy for the things he wants to do ” title=”Wink” /> ” title=”Wink” /> acts like a typical teenager and we pray that these days will pass fast!

10 is about where the body is getting ready for puberty so a lot of changes and emotions and actions on their part. I wouldn’t worry to much about it. I remember thinking omg he is going to fat, I mean he really was completely different than he had been. I swore it was hypo so my thought was fat means hypo so he must have it. The dr. even pointed out it was really like someone put fat on is stomach. She laughed and said cellulite and that it was just a stage..
She was right on the money with that!
Not that I would have cared if he was overweight but I feel kids should be playing out side and with him diong that and him gaining weight and cellulite I was confused and of course thought the worst.

Not saying he wont ever have it , he has a predisposition for it being that you have GD. Keep an eye on it and as he gets older make sure he is tested yearly.

My oldest gets his annual and that will be something we do this year as well. Better safe than sorry, my younger kids will also be doing that as they get older as well.

This isn’t your fault. Relax and enjoy him, he might be a big tall boy one day!

[mamabear]

in reply to: Question about pets/animals #1064337

Kari,
I have to say a HUGE KUDOS to your new dr. It is not often that a dr. stops and says wow what is this crap! Not saying he did say it to you but I am sure that is what he was thinking about your old dr. and what you were given.

Some tips as well for Medicines:
Try to use the same pharmacy for ALL of your medicines. Any time there might be an interaction with one most pharmacies have a system in place that flags it in the system to show them a red flag and they can tell you. OR like the good old days, your pharmacist gets to know you and says hey I know what you are on and this cant be taken with this. A pharmacist KNOWS BETTER than the dr. when it comes to any drugs. They MUST keep up to date with the lastest info and what they dont know they have the side effects at their finger tips to read up on.

Remember cold turkey for stopping caffeine and smoking is not a good combo. Either stop smoking and drink coffee or make sure you know you will get caffeine headaches for a while. I was drinking way to much coffee so I stopped and took some Tylenol for a few days. I limit myself to a cup a day if that much.

[mamabear]

in reply to: Question about pets/animals #1064333

Kari, I have some insight to this.. I worked for an animal hospital when I was 17-19 years old and I also wound up getting treated for Rabies. I didn’t find out I had Graves till I was 26.

I think what you have read is speaking of domesticated animal illnesses like (worms and Toxoplasmosis) which any one of us can get without having Graves disease. Which is also wild animal illnesses as well but most people have domestic animals thus the reason they say to watch out. Since you also work with wild life you should be careful to not get bit due to rabies and of course cat scratch fever and just in general getting bit brings infection from an animals mouth (any animal)and that can cause your immune system to fight harder if you are currently not taking care of yourself or your levels aren’t where they should be and your body is fighting to stay healthy.

I wouldn’t say stop doing what you are doing but I will say you need to take care of yourself just like you care for your animals, you need to care for yourself so you can continue your wonderful work! Good hand washing is key and I am sure since you are in the wild animal industry you already know that and do it so I wouldn’t worry to much.

When I was pregnant with my 2nd child, it had taken some time to get pregnant but I finally there. I was about 2 months pregnant and on PTU (ATD medicine for Graves). I had gotten a thorn in my finger and pulled it out but there was a piece in there still . I went to dr. and she looked and said she would not even put a pin in there because she was afraid my body would react to it and cause my Graves to go nutty. I didn’t get what she meant but she explained that the body does things when it’s in a shock, even the slightest little pain that deep could cause "something" to happen and she didn’t want that to happen since I was pregnant and doing so well on meds. It took a month for me to finally see that piece of thorn grown out far enough that I took a nail clipper and took it out. OMG I was grateful that day!

In your line of work, getting bit by something can cause your body to be in pain and react a certain way, everyone is different so you never what could happen. If an animal has rabies and you have to go through rabies shots that is also something else to consider. Since you know about protocol you should be fine. Unfortunately I wound up at the age of 18 getting bit by a baby kitten that had rabies. although my body had a very bad reaction to the shots I still had to have them but my Graves disease didn’t show up so that wasn’t the "trigger" for it. It was years later when I got the flu. So for me it was a virus that caused it and I have to watch every virus I get and hope it doesn’t happen again. BUT if it does I’ll sort through it again, I dont mind because it could be worse.

I think the more important thing here is not that you work with animals, you are doing the right things and as long as you stick with protocol and hygiene you should be fine. Remember when in doubt, stay away from the animal till there is someone who can help you. Wash wounds well and let them bleed for a while, its a natural way of washing impurities out of the wound… Most importantly you have to start taking care of yourself. Eat well and drink plenty of water. Take your medicine when you should and as the dr. says. Get checked out regularly and if yuor levels aren’t good make sure you get them checked according to the protocol of the dr. (some say every 4 weeks or 6 weeks till the medicine is working well for a period of time). After your levels are good and have been good on a certain dose for a while then you can go less often.

Being cautious with the animals is something you should be doing but also keeping up on your health is the most important. Even if you got out of your line of work you would still have to make sure your health was better. Good that you realize that you haven’t been taking care of your body and are working towards that!! KUDOS to you!

Thank you for taking care of those babies!!!

[mamabear]

in reply to: shakiness #1064409

shakiness was the last thing to go away for me as well. AND even though I am in complete remission for just over 3 years without any med’s and I still have my thyroid I STILL get the shaky feeling when I am stressed as well. I think it is just a part of having graves’ regardless of remission or stable on meds, some things still come out.

[mamabear]

in reply to: Confused… in need of advise #1064383

I have some very personal questions so I pm’d you instead of putting it out on the board. Please look in your inbox, Top left where it says (0 new messages), you can retrieve it from there.

[mamabear]

in reply to: kinda personal…but going to ask anyway #1064393

I have NO problem posting so all can see. I think it is important that all see, in case there are others that "search" for the info as well.

I was 26 when FINALLY diagnosed with Graves. I had been going through stuff prior to that and libido was surely one of them. I felt lazy with house work and I felt no desire at all to be "cute" or anything with my husband. I remember him asking me and I said I had no clue what was wrong with me and he said well go to the dr. and find out. He wasn’t’ a dr. so he had no clue! LOL
I didn’t even go then, I waited and waited and finally went due to feeling my pulse so high at night and boom there ya have it.

After going on meds I felt better thus the levels were better and I was myself again. ALSO not able to get pregnant while Graves was active, on meds it was better and was able to have 3 children(03′, 04′, 06′), I did have my 1st in 95′.

I feel that being hyperT and hypoT BOTH make your libido cooky. I don’t think it’s a matter of your libido going to pot after you have RAI or surgery, I think it’s more like, your libido isn’t working right because your levels aren’t right after either of those. I think it’s a matter of if you have either done, you have to get your levels correct before you start to see results in your libido.

I went on PTU to regulate my TSH and was successful in that, went off the meds and have been fine. BUT when I was "low" and Hyper every time my libido was very poor.

Manage the levels right and you should be good.

[mamabear]

in reply to: Doc Inconsistency / TSH issues #1064404

Ghost, hello and welcome! I am not sure if you move around due to military or just life in general but have something stable is always key and if you can do it try to. If not here are some tips to help along the way…

1. First REMEMBER this…YOU ARE the client and what you say goes..NOT the dr. It is your body! You can FIRE the dr. at any time if he doesn’t feel that what you say should matter.
2. REMEMBER it is your right to get a copy of your labs at any time! There are no exceptions to this regardless of how reluctant the dr. is about it. He is not the holder of the key to your labs, YOU ARE and by "choosing" him you give him the oportunity to hold those labs NOT keep them under lock and key. You are not his puppet.
3. As someone else said, if you go to a lab to get blood drawn, ask if you can sign off to get a copy mailed/faxed to you. Ask them if this needs to be done EVERY TIME you go there, so next time you have another lab done you will know to sign again for that one or not have to worry about it. Some sign off for 30 days or so, some it must be every single time. It’s worth the minute to sign off on it.
4. If the dr. draws the blood there then ask that they ALWAYS send a copy to my primary care dr.. This is NOT asking them if they will, this is TELLING them they must send a copy to them. When any dr. draws blood and sends it out they can request that it go to them via fax and they can also request it go to someone else like your Primary care. Make sure that is done.
5. IF you go to an outside lab for blood, not only sign off on getting a copy mailed/faxed, but make sure you put your Primary care dr’s fax on there as well.
6. Speak to your Primary care dr. about how your Endo doesn’t give you the results and you are concerned about this. IF your primary says tough, then find another primary care.

Having a rapport with your primary care is key, if they are a jerk too then again seek another one. If they are kind then ask about getting another endo or ask your primary to continue your treatment as long as you are in the range you want to be.

Example:
Call the endo’s office and say "hello, I am Ghost. I would like to have a copy of all of my labs, when is the soonest I can pick them up?"
If the receptionist says you can’t ask why and if she says why then ask her to send that to you in writing. Usually asking a dr’s office to sign there name to something that says you can’t have your labs gets them to get them ready for you lol.
If you wish to have more than just your TSH level checked, ask your dr. to give you the paperwork or Website he is going by for the criteria of dosing for your thyroid condition. For example…. If he goes by http://www.Idontwanttouseanythingbuttsh-this is not a real link.com for the informative criteria of your particular disease then he should be able to readiliy give you that site.
You could tell the dr. to refer to the AACE and read up on it, you yourself should read up on it as well. Unfortunately the latest updated one is 2002
Click here for AACE guidlines
Click here for AACE PDF link This might not work if you don’t have Adobe reader.

You are your best Advocate, NO ONE else can be. You need to use a brass set of ” title=”Very Happy” /> ” title=”Very Happy” /> things or borrow them before you go see your dr. again and tell him what you want. If he says no then ask why and ask where he gets his info from. IF you tend to get embarrassed from asking those kinds of questions or if you are all gungho about it then get shy when you see him, practice in front of someone. Speak it out loud because in your head is different then speaking it right to someone, even if it’s in the mirror. It never goes exactly as planned but feeling like you have support from here can help.

I am all about "kick em’ to the curb" if they don’t help you. My #1 pet peeve is poor bedside manor. 2nd is dr’s who wont give out results, and dr’s who wont give out results unless you make another appt. That irks the heck out of me.

Sure hope this helps and makes you feel empowered! YOU ARE NOT alone. And yes I have had a few dr’s who were jerks and told them just that. Takes time to be your best advocate but as you say you move around, so you dont have time, you need to do it asap.

Get copies of every dr’ who have been to, even if you have to call them and ask them over the phone what your lab #’s were, and keep an excel spreadsheet of them(date and ranges for each test).

Good luck!

[mamabear]

in reply to: Urine flow…5 yr old-Potty talk =) #1064473

I just read the thread and am a bit concerned with your Pedicatricians lack of concern for your child and the trickling. Regardless of her having graves trickling is a symptom of something. Whether it be of her being 5 and not having strong enough muscles yet or not might be the reason BUT trickling is a symptom of something even if it is that simple of an answer.

Girls including boys go through stages of growth spurts with their bodies and with their urinary tracts. Teaching a child to "hold it" is something we don’t want them to do BUT it is a teaching tool to use in order to strengthen their bodies.

Teaching a child to "stop and go" as a game is very helpful during these times. Here are some tips I used with both my boys and both my girls. NON of them have Graves but they all had trickling at times with no UTI.
Me on the other hand I have UTI’s with no symptoms so just keep an eye on her and any redness in that area or her saying it burns "down there".

Tips;
Girl- tell her you have a new game. It’s a potty game. If you wish you can "show" her with yourself while you are on the potty. Some women are comfy doing this some are not.
The game is that you sit on the potty and go peepee, IF you can’t go peepee you can slowly to 10 and it is so cool because by counting to 10 your peepee knows to come out. <

---

You are telling your child this part. lol
Usually the first few tries it didn’t work after I counted to 10 and the kids were disapointed, so I would say it’s ok "we will teach your pee to come by 10 next time". After a few times they really did get it and by 10 they would flow.
Now once you teach this, THEN you can teach the new game of stop and go peepee. Yes I said stop and go peepee is a game!
You start to go pee then mommy says "STOP" and you stop, then when mommy says "GO" you start peeing again. This too takes some practice but they will get it eventually.

This helps strengthen their urethra’s in girls and boys which are changing all the time and will continue to change as they grow older.

Trickling could be as simple as she isn’t drinking enough water. If she has a little milk in her cereal and a few cups of liquids during the day it night not be enough. That isn’t good for any child but with a child with Graves its important to be hydrated. Mental ability/awareness can be affected by dehydration for anyone so someone with Graves who is always loosing liquids due to sweats is important to keep well hydrated. Lemon or lime in the water will help give her a bit of fun, or even a slice of orange in it.
We even make our own teas here with herbs we grow in the house, the kids love it and drink water just to be able to put a slice of lemon and a peppermint leaf in the glass!

I know your dr isn’t worried and I’m not saying you should be worried over this, just make sure to keep an eye on her and if these suggestions don’t work then look for other reasons like a UTI.

My kids went through this as most kids do… the water intake is a big thing when it comes to trickling, if they dont have enough it will happen. I think with a bit more water/liquids in take she will have a better flow.

Hope this helps!
” title=”Smile” />

[mamabear]

in reply to: Late teen with hyperthyroidgraves #1064537

Hi and welcome here! I have been away for a while, I have been ill yet again so I don’t have much time to catch up on all of the posts typed here so forgive me if I repeat something.

I too have cold intolerance, it is not that uncommon. at your age my mother thought i too was hyperT even though my TSH was normal. I didn’t loose my hair or anything, basically same symptoms you said.

it wasn’t until I was 26 that I was finally diagnosed with graves.

Just because someone in your family doesn’t have Graves doesn’t mean you can’t get it. Somewhere down the line someone in the family might have an autoimmune disease. It doesn’t have to be graves disease. AND way way way back in the day families did not discuss with the others what was going on in their lives and they might not have known they had an "autoimmune" disease. I traced mine back but it is hard and my grandmother swore that there was nothing. Not her fault, she just didn’t know and back in the day they didn’t discuss it even if they did know. it is times like now that society NEEDS us to speak up because there are so many things out there that can help now a days.

You should make sure your dr’s know that you are taking suppliments along with your mehtimazole.
Also you are eating a lot of dark green foods, those contain amounts of iodine in them. at the time I knew about my graves I tried to stay away from iodine. not sure what the studies are now but I did stop eating iodized salt and kept away from the dark green stuff for a while.

You should keep an open mind about meds/surgery/RAI…. There was a time where I said there was no way I would have RAI done, what God gave me is what He gave me and that was that! BUT as I get older, I am wiser and have learned that just because He gave it to me doesn’t mean if its broken I have to keep it if it makes me sick. So just keep that in mind.

I still have my thyroid and no I didn’t have RAI/surgery. BUT I also took my meds and didn’t think I could do it with just diet change. You are only looking for trouble if you choose not to take the medicines, Graves doesn’t care how you feel about natural stuff or western medicine…it has no friend!

The fact that your friend gave you the 5HTP, I hope you looked it up before you took. Unless your friend has an M.D. behind her name or a certificate in nutrition dealing with Graves patients she shouldn’t be giving you anything unless you yourself research it. Your body is still very new and you can harm your body with things that go in it that aren’t approved. Suppliments are good but the dr. should know about them before you use them. Just like taking any other medicines or over the counter stuff you should check with your dr. about before taking them.

Your life isn’t over! This is only a bump in the road on your journey to greatness! Fight for what you want! It is ok to be upset about everything, its a stage you go through. Feeling sorry about the things you can’t do is also ok, but know that it wont always be that way and take your meds and you will heal. Healing takes time, so take baby steps, don’t over do things.

Be honest with your friends, don’t stress over the little things it isnt worth it. Talk to your family about how you feel and what is going on. The stronger support system you have the stronger you will get!

[mamabear]

in reply to: Out with one infection in with another… #1065011

I do, lived in wooded area 14 years, my son who is now 15 had it when he was 3. it was simple enough though because he had a full bullseye.I remember the antibiotics although plain amoxicillin they knocked him on his butt. I stayed home 3 weeks with him to go through it. I’d do it again too.

I am simply deciding for you, that you will not have a recurrence of Graves. Enough is enough!

I like this part… think I’ll keep a note of this just in case Graves’ comes back, I whip this out and say hey you can’t because this was thought of and written down!!! ROFL!

I have 4 children, two boys ages 15 and 7, two girls 5 and 3 but going on 4 and 6 very very soon
It does stink but I guess it could be worse, I know Lyme is no joking matter either but it surely could be worse. I am blessed with many things and the knowledge to be able to advocate for myself

cynthia wrote:.can I ask how were you treated in the past for graves????

I was trying to get pregnant so the choice of drug for me was PTU (Propylthiouracil).
Long story very short:
Married had a child, divorced
Remarried so was trying to get pregnant
Had flu 11/2000
Feb 2001 wound up with symptoms that led me to a dr. for check up.
3 weeks<—-Notice the amount of time there, 3 weeks later I was called and told you have Graves’ disease you have to go to an Endo!
I was mad that they waited 3 weeks and took my labs and went to see an Endo who was a total jerk. Said RAI asap, I said no would rather try meds. He said no, my dh said I support you. I told dr. to kiss my butt and left.
Went to another Endo (older dr. from new england and great bedside manner) he said lets try PTU but wouldn’t guarentee anything. said the PTU would take about a year to level and we would go from there.
I was mortified that I couldn’t get pregnant but was willing to work with this because the dr. was so caring.
3 months after treatment my levels were normal. Dr. laughed and said although he knew i had a mild case he didn’t think it would be that fast. I told him I changed my eating habits and was trying to be stress free. lol
I was told to try to get pregnant.
Was seeing a dr. who deals with pregnancy and thyroid and I got pregnant about 6 months after I levels were normal.
Went off PTU due to pregnancy was leveling out TSH and didn’t go back on them again.
Got pregnant again with no meds for thyroid had baby
I did get a virus along with the one of the kids and graves came out of remission(it was a horrible virus)
went on meds for a short time and back into remission I was. went off meds and 7months later with no meds got pregnant again !!!!!
It was one other time I had to take a short course of meds to put me back into remission and then off of them again and have been in remission 3 years with no meds as of right now.
I have to say that I am one of the lucky ones. THe symptoms stink but the meds work well for me so I am very happy with my choice to use the PTU. If i had to do it again i would choose PTU or Tapazole depending on what the dr. wanted me to use since I am not planning on more children.
If i get really bad I might opt for surgery because I have 4 kids and RAI wouldn’t seem like the right thing to do for me. I don’t know for sure what I would do because i’m not that in that situation.
I have to say that although I am in remission I have symptoms, and I had symptoms my entire life before I was diagnosed and my labs were normal. I think that just goes along with having graves.
We can look back and see the signs but didn’t know what they were for.
I fear many things but I do try to say that if I dont know what it is I can’t kick it’s butt.
Once we know what it is, whether it be Graves, the flu, or even cancer we can deal with it and move on. Its scary but that is the way I look at things.

There is no right or wrong way to how each of us cares for our graves. It should be a choice you make that will help you the best way. As I said before, I might opt for Surgery due to the kids I have if it ever were to get bad. Everyone is different though. One thing I did when I was trying to get pregnant and dealing with Graves was to learn to crochet, I wished I had had someone who knew around me but I didn’t. So I just got a book and by trial and error learned on my own. It is a very very relaxing thing to do and it passes the time. when i would sit up in bed with nothing to do but look at the walls with my eyes all wide and couldn’t sleep I would pick up my crochet and be able to fall asleep eventually. But at least I wasn’t "non productive". lol
You have found a great place here, continue to use us as support. I’m willing to answer any questions so If I missed anything please let me know.

[mamabear]

in reply to: Leukocyte Hyperplasia lesions?? #1065023

Sue,

Look at the definition of leukocyte hyperplasia

leukocyte- white blood Cells that defend the body against invaders (this is the easy version of it lol).
hyperplasia – referring to cell growth within an organ that doesn’t normally stay there or shouldn’t be there.

This term "leukocyte hyperplasia" in my book is nonsense. It’s not a diagnosis it’s a very very general term they use. The fact that you say the said it was positive for Lupus should be further explored. So what if the ANA doesn’t come up postiive, ANA shows if you have inflammation so you might not have any right now. Doesn’t mean you dont’ have lupus.

You might want a referral to a Rheumatologist for such tests for Lupus. Just to be on the safe side.

Have you tried Hydrocortizone ointment?
Have you been tested for allergies?
Do they ooze yellow liquid?
When they are itchy and you do scratch them do they "flare" up ?
Do they have white caps or white scabs on them?

[mamabear]

in reply to: diagnosis in April #1065160

Generally Type 1 or 2 would be in this case. I honestly would be furious with my general dr. if she allowed a stranger to tell me something of such importance only because she didn’t "want to". But I would have forgiven her.

Your hair falling out is common, be gentle with it and take care of it. This is only a symptom, once you are on the road to recovery you and your hair will be back to normal. Taking care of it wehn it is at its worst will help. Comb from bottom to top, no matter how hard you want to just rush out the door and brush and run please take time to be gentle with it. it makes all the difference.
Tell your family what you are going through and invest if you feel the need to in a hat or scarf to wrap around your head. when I had hair in clumps which was a long time ago, I wore my baseball hats. I have plenty now and some are sassy as my girls say… One says "yeah I fish like a girl!" my others are camo and I love them!
I decided that after I was done way back when that I would cut my hair and give it a treat. You might want to do the same, something to look forward to instead of being upset that it is coming out.
It is a horrible feeling to loose your hair in this manner so knowing what is wrong and being able to laugh a bit about it helps. I woke up one morning with hair right next to me and laughed my dh was like what is wrong with you!? I said I have a friend sleeping with us, as I pointed to my clump of hair. He looked at me as if I were mad and started laughing. To me if i coudln’t laugh at it I would have fallen into else instead of looking at it in a possitive way. I am generally a positive person so I try hard to keep up ones spirits.
You could also dye the tips a little and know they will fall out so no worries! What’s a little blue going to hurt or maybe a bit of purple! Stay away from greens though. Been there done that and well lets just say don’t lol lol !

This is a journey that you are on and although a pain in the butt and can sadden you, you are not alone. We have plenty of rope to help drag you up that mountain and reach the top!!!!!

[Author]

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