[mamabear]

#1066083

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!

[Ski]

#1066084

I don’t have much time, just wanted to quickly point out that the "cold phase" refers only to TED, not to Graves’ thyroid disease. Thyroid hormone levels need to be managed carefully lifelong, no matter what treatment we choose.

[leggymummy]

#1018623

After reading this site more and more, I am concerned about my thyroid management. I am always being told my TSH ( I think thats the correct abbreviation) is slightly out, it has never been *normal*. I do not sleep properly and always stressed, I recently was told I was hypo again and my TSH was sky high, now I am confused if I am in the cold phase of Graves, I should be by now I first got the bulging at 17 years old, I am 30 now. When I was younger I did not manage my medication and they gave me the radioactive tablet, twice (it did not work the first time) I now have had my medication put back to 200mg of thyroxine daily and I do feel a little better but somewhat more *up* and anxious. I feel like a yoyo! I did miss my last blood test because I was so tired all the time and with the breastfeeding and the baby I just let it slip, will I always become ill so quickly if I do not have the right meds? I also cannot drop in to a deep sleep I have chronic sleep problems, I have vivid and long drawn out dreams al night every night, some of it is inherited (my mum is a vivid dreamer) but I think my chemistry is keeping in the lighter sleep cycle, and with my Son waking it is very hard. The doctors just read off my thyroid results and off I go, I do not feel taken of or looked after with regards to this, and I feel I was not informed of what I was taking when I took the glowing pill (RA) ……Is there any alternative to thyroxine, something that will sit better with me? Thanks ” title=”Wink” />

[Kimberly]

#1066085

Hello – First of all, do you have a friend or family member who can help you out around the house and give you a bit of relief? Easy for me to say, since I don’t have kids! ” title=”Very Happy” /> But you definitely don’t want to miss any more doctor’s appointments, as getting your levels stabilized is the key to getting your health and your energy back!

Mamabear had some great suggestions on staying healthy.

In terms of alternatives to your current meds, hopefully someone who has been through hypO can jump in here. I know of some patients who have added T3 (the most active and potent form of thyroid hormone) to their regimen. However, from hearing stories of these patients, the results tend to be mixed — some feel fabulous…but some actually feel *worse*.

One thing that might help your doc to help *you* is to keep a symptom diary. For example, how many hours you slept and if you still needed a nap later in the day, if you are experiencing hand tremors, issues with constipation, weight/appetite, resting pulse rate. This specific information will be more helpful to your doctor in pinpointing any issues than just saying, "I’m tired."

Best of luck!

[bradybunch6x1]

#1066086

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

[leggymummy]

#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]

#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

[Bobbi]

#1066089

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.

[leggymummy]

#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” />

[Bobbi]

#1066091

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.

[hyperm]

#1066092

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

[leggymummy]

#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]

#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

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