[leggymummy]

in reply to: Just had OD all fine very happy :) #1065601

Hello and thanks for you’re reply ” title=”Very Happy” /> I am very happy to hear that your measurements were better month on month, and I have decided to give myself a break! I am going to get some therapy to help me smooth over the insecurities that have cropped up from looking this way for half my life. I think I feel ready to cast off the old me and embrace a new, slightly improved me ” title=”Smile” /> time for me to be happy I think and hopefully not base this on the way I look but on the love form my kids and husband, the things that should matter to me. I am so over feeling less of a person so thanks for your message please let me know how you are you going in a few weeks and I will check back with hopefully good news about life in general. And just thanks to everybody who has advised me on here this is a very warm and genuine place for people to come ” title=”Very Happy” /> All the very best xx

[leggymummy]

in reply to: Just had OD all fine very happy :) #1065599

Hi Ski an thanks ” title=”Very Happy” /> I am day 5 since surgery now the drugs have worn off I am in some pain ” title=”Sad” /> Not too bad but the eyes themselves are hurting. I just wanted to ask if any one experienced nausea after their OD? I am getting feelings of sickness waving over me a few times a day, I am only on paracetamol and the odd diflofenac so reason from the meds…..I do have some slight difference but now the swelling on the outside is settling I must say I was a bit dissapointed I did not get the immediate set back look. I know I know it’s only day 5! But I am hoping they will settle more? My surgeon assures me they will in weeks and months but, I don’t know, I feel I see a change BUT maybe I hoped for too much? The actual eyeball is flatter in the head it was sort of cone shaped before so there is a change….What a struggle this eye business is the bruising is fading away like the snow in spring, I hope I can find the strength to cope if I don’t achieve the look I had in my mind ” title=”Confused” /> I can’t have nay more surgery the road for me with is closed UNLESS they offered a guaranteed solution but this is it I think I don’t even know why I am considering more surgery I just woke up from the last lot! Anyway I hope somebody can advise I never listen to Doctors anymore really you don’t really know unless you have lived it eh xx Thanks jo xx

[leggymummy]

in reply to: How to hide loose skin after OD? #1065899

Hello and thanks for your advise ” title=”Very Happy” /> I was very concerned the skin would bag or crepe on my upper lid, I am still quite young so I hope this and healthy lifestyle helps with any problems with lid position. I have to say, after the first op, I was let down somewhat I can remember feeling upset that it was not as much of a difference as I had hoped, also it was VERY painful and I got a runny nose for years afterwards that has only just stopped in the last couple of years. HEY ho! Come what may, I know he would NOT do the operation if he did not think he could give me a better cosmetic look so I am happy, I just don’t want to imagine walking out of the house with my hair tied up, or not wearing sunglasses all the time if I am tired or my eyes are dry! I will have my fingers crossed that things go back with the eyes, BUT I have been like this for 14 years! ( I am 30) so they have been pretty stretched I should imagine. Could my eyes be pretty again? Who knows, I am so, I can’t think of word… ” title=”Confused” /> I am so happy/nervous/hopeful……This disease has robbed me of so much, the pain I have gone through the mocking the emotional turmoil..To be told at 20 very bluntly I will look NEVER the same again, it hurts you know? I am going to put up some pictures if I am brave enough so I can share some hope with others ” title=”Smile” /> Thank you snelston I hope your recovery is going well, Jo x

[leggymummy]

in reply to: TSH levels always *out* #1066094

hyperm wrote:Hey sorry you are having such a hard time of it. You have been battling with this disease much longer than I have. However, for the last 4 and half years I had yet to receive a TSH result that was within the norm until last month (8 months post op for TT). Its so frustrating I know. However, someone else has said about hypo being just as hard as hyper. I would have to disagree I feel I can cope better with hypo even though there are downsides I am not kept awake with tachycardia all night and its different type of tiredness for me.

Like mammabear said its so hard when you have kids and I often say the same thing – that I rouse when I hear my 2 turning over in bed. Mums never get enough sleep ” title=”Very Happy” /> Its very hard when you don’t have much support – I know that from personal experience.

Everytime I have my bloods taken I ask what my levels are and mark them down so I can remark on them to my GP/endo and let them know I am taking an active interest in what is going on with my bloods.

I hope you start feeling better soon x

Hi, Thanks for your reply ” title=”Smile” /> I feel a LOT better now my meds have been put up, and with the news about my op I am not really sure how to feel ” title=”Wink” /> The kid are hard work, and yes I have brought them up pretty much alone with my Husband (when he is not at work) so it takes it’s toll. As I said before , I wish I had found this site years ago, but I wasn’t ready to deal with it, feeling too fragile and emotional all the time, nightmare! Now I am finally getting my face back ( if you understand what I mean that) the surgeon is asking for photos of BEFORE my eye problems, but I was a typical teenager who never liked her picture taken (wish I knew what was in store I would of been jumping in front of the camera then lol) he wants to try to restore me to as natural a state as possible, I could kiss him! ( I hugged him how funny is that?) I know I have yet another surgery and swelling and another saga BUT how worth it, for me anyway. Thank you xx Jo x

[leggymummy]

in reply to: TSH levels always *out* #1066093

Bobbi wrote:Once a month might be too frequent. If you get blood work done before the TSH has had a chance to "catch up" with your dose change, you could remain on the hormonal roller coaster. TSH is a rolling average, not an instantaneous figure. And there is definitely lag time involved. So, if you test it too soon, your doctor might call for an increase in your dose that will prove to be too much over the long run….. If it works for you, fine. But if you are still plagued with ups and downs, you may want to consider going to six weeks, or two months between tests to space things out a bit more. And if you are feeling well, extend it back to the three months. I get my blood tested once a year now. And it is consistent.

OK I will take this advise on, I will try 6 weeks between each test and see if that works, if not maybe I will go back to the old 3 months after all lol ” title=”Smile” /> Thanks for the information again, I am stunned at how little I know still about something I have had half my life! The older I get the more I learn, when I think of the old teenage me, it makes me so, so sad. I was so hyper thyroid and so ill, I didn’t go through puberty until I was seventeen, I had a body of a child, even down to my hymen, it didn’t grow properly until I had the hormones to speed things up, then I went through puberty in 6 months, it was horrific. Actually I have never told anyone about this stuff, I just kept to myself, carried on being ill, skipping my tables I wish I had controlled it, maybe I could of prevented the eyes becoming so bad? Who knows eh……Thanks again, jo xx

[leggymummy]

in reply to: TSH levels always *out* #1066090

Bobbi wrote:Hi, Jo.

I was reading through your last post and want to respond to a comment you made (or a question, perhaps it was). We are never given TSH replacement. The TSH is a hormone that is released from the pituitary gland in response to thyroid hormone levels in the body. The pituitary "reads" our blood levels of thyroid hormone all the time, and acts like a thermostat for thyroid hormone production. If there is too little thyroid hormone the pituitary will release more TSH (thyroid stimulating hormone) to prod thyroid cells into producing more hormone. If there is too much thyroid hormone in the body, the pituitary lowers its production of thyroid hormone. Think of a seesaw with thyroid hormone on one end, and TSH on the other. As one goes up, the other goes down. So, when our TSH is "off" it means that our thyroid hormone levels are off. In your case, having had RAI, when your TSH is high (showing too little thyroid hormone) your doctor raises your dose of replacement hormone.

I hope things have levelled out somewhat now, I had bloods on Friday, I think that is the key, getting your bloods done once a month not once every 3 months, so you keep an eye on the little critters (is a thyroid a critter? mine has been ) I know it takes about 3 months for things to change BUT I want to manage things better so I think test, test test. I think I will do some more meditation CDs my mind is always racing, thinking too much. My general health is very good I should be grateful, I know how ill I have been in the past ” title=”Sad” /> Thanks for the information, I appreciate the time taken ” title=”Smile” />

[leggymummy]

in reply to: TSH levels always *out* #1066088

bradybunch6x1 wrote:Hi,
I have beenhypo more than I would like to share, and let me say that it is just as bad as the hyper part of all of this. There are many different types of thyroid replacement on the market, and each one of them can and often do make you feel a bit different. The one thing that I learned along time ago is that if your use to the generics of these drugs it often is different brands that can be filled in the place of what we were taking just the month before. This sometimes can cause the yoyo effect. If your taking generics make sure they are the same brand each time. These drugs all have different levels of other products in them besided T4. Now as for the adding T3, this is often hard to have a doctor do, and it has become even harder since the current market for the pig thyroid they use has had issues being on the market. There are pharmacies out there that do compound the meds to give the compination of T3 and T4 together, but unless you have a doctor willing to write the prescription then that isn’t going to happen.
Also as far as the sleep goes I often was the same as you, but am so totally the oppisite now. That was when my thyroid levels were way out there before that the sleep was hard sleep, or none at all. As for children, that is concerning to any mother, and there are drugs out there that are made for sleeping issues, but I wouldn’t recommend any of them be taken until your thyroid is back in check. You will find that it will be easier to sleep, and easier to wake once these things are all back in place.
I also like to say that being honest with any doctor even if you think you will hurt there feelings is best. They need to know that you feel mismanaged, and they need to understand why. I have found many times that helps them help you. Also something I learned along time ago is that if I was going to take the time to find out about my health, I was going to take the time to write out the questions I had and take them in to them. It helps them understand, and you don’t forget. Also if they don’t have the answer for it right then they may want to make a copy, so they can get the answers.

Anyway good luck, and Congrats on the baby,
Valarie

Hello Valerie,
Thanks for your reply. I am on 200mg of thyroxine daily and I do feel better now, as I said I always in the REM stage of sleep (the lighter stage where you dream) or I am in it for too long, not sure if that is my P gland (can’t spell it) or just the way I am. I think that having my tsh levels always slightly out, makes me more nervous and stressed, and contributes to a bad night sleep. I wonder if taking tsh would help settle me down? I will make an appointment and have a chat about it, thanks again, Jo xx

[leggymummy]

in reply to: TSH levels always *out* #1066087

mamabear wrote:HI and welcome. I have to address some things here, is it that you are having a problem getting to sleep? If you are dreaming, you are in a deep sleep. Which means you aren’t sleeping lightly. BUT you say that you have a child, ANY woman in a deep REM sleep or not WILL wake due to a child even moving. It’s just the way we are programmed. Some of us don’t do that but most of us do.

YOu say you have always been "out" , you need to find out what your lab work is and research this for yourself and talk to your dr. Honesty is the best, tell him that you feel you are just being told something and then patted on the butt and pushed aside. You want to really be listened to.

NOW for the big one….. You’re a mom!!!! Of course you are tired, of course you can’t sleep, that baby will keep you up for a long time to come and when you sleep through the night the first and wake up and realize that you slept through it, you’ll freak out thinknig something must be wrong and you didn’t hear him, you’ll rush to him to see if he is ok. yep being a mother is great! LOL

Breastfeeding is a HUGE culprit of not sleeping and feeling like a yoyo. Believe me I am not in the slightest saying that you feeling your thyriod is the problem is the wrong thing to think but I have Graves’ although in remission right now, and I have 4 kids and breastfed the last 3 and my thyroid was in check so I know the yoyo feeling when nursing. That on top of your levels not being in the right range is a lot to handle. You worry about the baby, so you are stressed from not sleeping, you feel like crap because you’re nursing and might not be drinking enough water and eating several small meals a day and you probably have a husband who works so he can’t help you at night. It can be overwhelming, this i know.

You getting sick. There are some tips that I tell others especially with graves’ and everyone with a newborn or any kids. Wash your hands, Wash wash wash!!!! Every single person that enters your home MUST wash their hands! No exceptions
Kids, adults ..it doesn’t matter! When you come in from the store, wash your hands! When your dh comes home ..wash his hands! This really helps keep down the germs that you have enter your home. Freakently wash light switches, toilet handles, door knobs and sinks with a bleach solution. Even just soap and water will do fine. It really helps keep it down. Keep your hands away from your mouth AND your babies mouth. If you are out with the baby keep his hands away from your mouth as well, because if he touches something the germs will get into his and your mouth. Our bodies can be weak but we can try to keep the germs at bay by doing just simple things like washing our hands.

When you get dry skin in the winter then keep some lotion next to sink so you can use that after washing hands.

I Don’t have hypo so I can’t help with the whole hypo and what meds are a better idea. But I hope that some things I’ve said have helped. If you need to chat in private just PM me. Nursing is a strain on any woman, it’s harder when you have a thyroid problem…so my PM box is open if you need to talk!

Hi mammabear, thanks for your reply, your right it is hard with kids, I don’t have family support from either side so I bring up the kids pretty much alone with my Husband who is helpful around the house too. I do wash my hands and the kids too were pretty diligent about it actually. I think my sleeping problems may be more baby associated so all your advise is taken on board and thanks so much, jo xx

[leggymummy]

in reply to: Hi, got my proptosis measurements, some advice? #1066110

Hello, thanks for replying, I have had another day of feeling tense and nervous today, I took my kids to a playgroup and just felt uncomfortable AGAIN. This is kind of thinking is taking over my life now, and on an emotional level I have had enough of feeling this way. I already know, if I like the surgeon I will go ahead and have the operation, I have never adjusted to looking different. Thanks for all your advise, my measurements are from the outside of the orbital rim/bone, so not sure if that is the same as yours. I hate the way I have been living the tension is incredibly hard to bear (the mental tension) BUT now I feel happier after reading yours and others stories, it has been made out by certain Doctors I would go blind or risk DV for certain, almost brushed aside for years, horrible well I am hoping for a small reduction I am with Mr Reuser next Monday watch this space …… Thanks for sharing I found it very useful ” title=”Smile” />

[leggymummy]

in reply to: How do people cope with the nasty comments and laughter ? #1066151

Thanks ski, I think your right about the last op, it was what was do-able at that time. My vision (my focus) has been steadily worse over the last 5 years I have to wear glasses for reading and being on the PC. Not sure if that is related in any way, but maybe. I did say to my Husband, if I ever got a blow to the eye or if I fell the eyeball has NO protection, as it sits outside the orbital rim, I would probably go blind. I get funny pressure things behind my eyes sometimes too and a little eye strain, I do not want that to get worse. also, acceptance of the way I look has never really come, even after 16 years. I have never accepted it the way some people do I have always held out hope that one day something could done. I am with the original surgeon who performed the op back 8 years ago, on a private basis. I might be able to get NHS funding (Uk) but that may take time I don’t know if I can wait any longer but the money is not an issue, what price can you put on a quality of life, having a life and going out even if you feel low. Anyway I will post back Monday, fingers, toes and everything crossed!!!! ” title=”Razz” />
Jo x

[leggymummy]

in reply to: How do people cope with the nasty comments and laughter ? #1066147

Hi, I was Mrs angry writing that earlier, so thanks for your patience ” title=”Smile” /> I think some people forget that TED is a disfiguring disease, and with any facial thing it is always going to be difficult to deal with. Your comments are completely right and I do live a healthy lifestyle with regard to not ever smoking, I don’t drink or do drugs or anything like that. People tell me how beautiful I am all the time I always internalise the one negative comment, from a person who is uncomfortable in their own skin, hence the comment. I was going to stay in tomorrow night but your word have helped and me and Husband deserve some time together, regardless what people may or may not (I know some things are not directed at me) say. If I feel confident, people don’t say anything bad, or maybe I don’t notice it. If I feel tired, or exposed, I get insecure, then attract negativity. Ahhh you cannot win, I just need to get some self confidence. I DO want the OD but I am scared. They should of done an OD back when my eyes were really bulging out, one upper lid was retracted both lower were and still are retracted, and they were very extreme, but maybe eight years ago they did not have the advances in surgery like swinging eyelid surgery or endoscopic variations on the technique maybe….I have contacted somebody who just had the op and I am hoping for a reply soon, I just need to know what to expect, (I am paying for this myself on credit cards) with healing and all that stuff. I now I will never look like the old me (been 16 years since my eyes were normal) this will be my 2nd eye surgery so I know what to expect I think ” title=”Confused” /> Thanks again I love this site xx

[leggymummy]

in reply to: New on here, considering OD after graves from 2006 #1066462

Hi, Thanks for your reply I am really glad your recovery is going well ” title=”Smile” /> Do you have much swelling? I can remember from my operation my eyes were swollen (I have had fat remove via holes in the nose 8 years ago) and my eyes were painful for about two weeks then I was fine. I am more scared of having double vision, but I think my original operation held more of a risk than OD for double vision and the original surgeon who is highly recommended is seeing me again, With that said, I am also seeing another surgeon who does my type of "cosmetic" proptosis reduction, the bulging out. I have wrestled mentally with myself with said daily, because you see yourself everyday so the strain is huge, I have never accepted it. I know already I will go ahead and have surgery but I do feel selfish because of the risks and my two young kids, and long suffering Husband! Would you keep in touch with me and update me on your progress? Then I know how much help I would need as I am still BF my youngest Son and I have a very hyper eldest so knocks will be expected. Thanks again hope all is going well!! ” title=”Smile” /> Jo x

[leggymummy]

in reply to: Pregnancy after RAI #1066494

Hi, I had RAI in 1998 and again in 2002 (I think this was the date around that time anyway) had a healthy baby boy in 2006, and had another healthy baby boy 2009. I waited for my periods and ovulation to be really regular and I could set my watch to them! I took my thyroxine throughout my pregnancy no problems, you do require a bigger dose when your body naturally calls on the thyroid hormone to sustain the baby in the first few weeks (you get a surge in hormones that then go to the baby, thyroid is one) I was not actively trying for a baby until 2005, took me 2 months to get pregnant forst time ” title=”Razz” /> I really hope you get your baby, I don’t know if this really old post but I thought I would answer anyway just in case ” title=”Very Happy” /> Jo xx

[leggymummy]

in reply to: New on here, considering OD after graves from 2006 #1066460

Hi Ski thanks again for your advise, I did not realise there were variations of the surgery that is a HUGE relief as I thought the bone being burred away was the only option. You are right, I do look normal, but you can see I have had graves (I hate the word normal, what is normal anyway!?!) I think of all the autoimmune problems, thyroid imbalance is the worst to deal emotionally if you get graves also. It seems there is the dreaded OD operation OR eye drops, with not much middle ground for Men or Women who cannot cope with the change of facial appearance for whatever reason. I really think this middle ground (no vision problems but with obvious protrusion) is a hard place to be as too here in the UK it does come for free and it is not cheap. I hope I have nice big orbits (to match the eyes lol) so the surgeon has space to move around! I will post some before and after so I can help others who are in the same situation decide maybe. My appointment is March 15TH so I will keep checking in with nay queries, thanks for your eply i really do appreciate having somebody who truly understands xx jo ” title=”Very Happy” />

[leggymummy]

in reply to: New on here, considering OD after graves from 2006 #1066458

Hi, thanks for your reply! I meant 1996 not 2006 lol I have this for a while. I am in the cold phase on TED, but mine got treated as one whole thing, not two different problems. I think the UK is quite good but probably bot as advanced in terms of treatments? I suppose what I wanted to ask is that is the OD seems very drastic for somebody like me but this has become a deep seated issue, I have been thinking about this op for eight years on and off. I have no double vision, and the top lids are fine, the lower lids have a retraction (so you can see the lower roundness of the eye making it seem bigger) is the recovery bad and could I be making things WORSE rather than better? I would say my eyes sit half in half out, and I hate it. I just wanted to ask if you knew the chance of me making thing worse rather than getting the proptosis reduced? Thanks so much xx

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