I Need Some Advice Badly!

[mommy2ky]

HI everyone. I think I might of posted before on this sight but I need some advice again. I will tell you a quick history. I became ill after my son was born with every symptom you can think of. The docs werent much help and finaly found one who now discovered this is what I have but Is being controlled by meds. I have Hashimotos disease (hypo thyroid autoimmune), Low ferritin but been on vits for a while now. Now I need B12 shots but my doctor said all of these are not anything too bad and I should be fine. I am also 5 months pregnant so I am scared to death of what this will do to me.

Now for the celiac part........MY mom has celiac disease and is doing great now. I had a blood test but mine was negative. I went off of gluten for a long time and was a bit better but not great. I cheated for a week or so and then all of a sudden my symptoms hit hard. so I went off gluten again and was doing better but not great. I went for 4 weeks and just this past week or so I ate some gluten without knowing it, about a week later I started getting symptoms again. I would go to bed and feel like I was so dizzy I was rocking on a boat, Nauseous, VERY weak that I thought I was dying, Burning tingling through my whole body that would come in waves and I would just cry because I thought I would pass out, I would be so weak I cant shower or stand for more then a minute. Doing anything is hard and I am so frustrated. It seems that it lasts about 3 days then It takes about a week or so for the dizziness to settle down. I am emotionally and physically drained. I have NO trust in my body and wont go far because of that. I have a 2 year old who needs taking care of but all he sees is "mommy crying". I really dont know what I am asking from all of you but maybe if anybody can relate or know what I am talking about I would appreciate it. I am so scared and I dont know what to do anymore. MY doctors arent much help and even when they have seen me at my worst blood pressure drops very low, they still dont seem concerned but I am living my life in fear and so sick I cant describe it.

Also I did lost a TON of weight and cant gain much back besides being pregnant. I went down to 110 pounds and my appetite is barely there. THANK YOU SO MUCH FOR LISTENING. I am sorry this was so long!!

[2kids4me]

So much going on - I know the feeling!

Even though the blood work was negative - it would seem that you respond badly to gluten.

I need B 12 shots too - without them I am so tired - I am useless, plus I get pins and needles and numbness, I drop things etc. Be sure to get them every month.

Hypothyroidism takes about 4 - 6 weeks to respond to the meds - longer if you are pregnant simpley because your body uses more hormone when you are pregnant.

You should ask for a diabetic screen if they havent done one aready - again your body uses more insulin while pregnant. The hormones play havoc with your mind and your body!

Low thryoid can give you that pins and needles feeling as can low B12

I can relate to having another child to take care of and mommy being wiped out. Before I knew I needed B12 - I would drive a block to the playground, then sit on the bench while the kids played - My head would be fuzzy, my legs felt like lead and all I wanted to do was go back to bed. On top of that my daughter needed physio etc., and I felt like I failed her by not having the energy to do it - but she was/is fine despite a few missed exercises!

My daughter got dizzy and had headaches with gluten plus she was tired and grumpy.

Consider following a gluten-free diet - you could be gluten intolerant.

You have a lot going on, dont feel bad about needing to sleep/rest. Do you have friends or family that could take your 2 yr old out for a play date for an hour or two?

Only advice is - take it easy, ask the doctors if low glucose could be making you feel crappy too, may be worthwhile to have an endocrinologist see you to rule out glucose metabolism problems or low cortisol levels (Addisons) . Likely not anyhting other than your thyroid levels are not up to snuff yet and low B12. It does not hurt to have an additional B 12 shot 2 weeks after the first - it is a water soluble vitamin. It may take that just to get your levels back up.

Hang in there.

[mommy2ky]

So much going on - I know the feeling!

Even though the blood work was negative - it would seem that you respond badly to gluten.

I need B 12 shots too - without them I am so tired - I am useless, plus I get pins and needles and numbness, I drop things etc. Be sure to get them every month.

Hypothyroidism takes about 4 - 6 weeks to respond to the meds - longer if you are pregnant simpley because your body uses more hormone when you are pregnant.

You should ask for a diabetic screen if they havent done one aready - again your body uses more insulin while pregnant. The hormones play havoc with your mind and your body!

Low thryoid can give you that pins and needles feeling as can low B12

I can relate to having another child to take care of and mommy being wiped out. Before I knew I needed B12 - I would drive a block to the playground, then sit on the bench while the kids played - My head would be fuzzy, my legs felt like lead and all I wanted to do was go back to bed. On top of that my daughter needed physio etc., and I felt like I failed her by not having the energy to do it - but she was/is fine despite a few missed exercises!

My daughter got dizzy and had headaches with gluten plus she was tired and grumpy.

Consider following a gluten-free diet - you could be gluten intolerant.

You have a lot going on, dont feel bad about needing to sleep/rest. Do you have friends or family that could take your 2 yr old out for a play date for an hour or two?

Only advice is - take it easy, ask the doctors if low glucose could be making you feel crappy too, may be worthwhile to have an endocrinologist see you to rule out glucose metabolism problems or low cortisol levels (Addisons) . Likely not anyhting other than your thyroid levels are not up to snuff yet and low B12. It does not hurt to have an additional B 12 shot 2 weeks after the first - it is a water soluble vitamin. It may take that just to get your levels back up.

Hang in there.

I was trying to figure out how to reply and ended up reposting your reply OOPS!! I dont know I have had so many blood tests. Is sugar a glucose type test?? I have gotten bad again tonight. I am weak dizzy and just had diahreah. I am so freaked out and want this to go away. I called my mom bawling so she could reassure me I will be okay. I am so frustrated. Thanks for replying!

[2kids4me]

Yes, blood glucose testing is the same as sugar levels.

gluten-free yogurt, bananas, rice, popsicles (gluten-free of course) can all help to settle your tummy and ease the diarrhea. You can get weak and dizzy from so many things.... from dehydration to anemia to electrolyte imbalance.

You could try drinking pedialyte - it is a balanced electrolyte solution sold at drugstores for babies/children with diarrhea.. If you dont feel like eating - it could at least provide you with fluids and electrolytes.

You will be okay - you sound tired as well, it is hard to get sleep when you have a 2yr old, diarrhea and worries on your mind.

Do you like tea? green tea or chamomile tea can help settle the tummy too.

Pick a humourous video/DVD to watch... put your feet up ... well until the next dash to the bathroom!

I will pray for you anf think of you, I hope things are better tomorrow.

Please keep your fluids up - you lose a lot in diarrhea.

[mommy2ky]

Diahreah stopped now and I am just super lightheaded but I have had this off and on for a year now and they have done many blood tests MRI etc..........found nothing but thyroid and iron but I have been on both meds for 5 months now so I should be getting better all I can think of now is gluten and my body is having a crazy autoimmune flare up and my body is going nutts!!! I dont know but I am trying to ease my mind some how I am pretty freaked out. Going to relax now and try to think positive this will get better I HOPE!!! THANKS SO MUCH!!!

[DeeTee33]

HI everyone. I think I might of posted before on this sight but I need some advice again. I will tell you a quick history. I became ill after my son was born with every symptom you can think of. The docs werent much help and finaly found one who now discovered this is what I have but Is being controlled by meds. really dont know what I am asking from all of you but maybe if anybody can relate or know what I am talking about I would appreciate it. I am so scared and I dont know what to do anymore. MY doctors arent much help and even when they have seen me at my worst blood pressure drops very low, they still dont seem concerned but I am living my life in fear and so sick I cant describe it.

I'm so sorry you feel so bad! I just want you to know it's not that uncommon for women to become totally drained after given birth and being pregnant again. Hormones are going crazy and you are trying to do everything. You do need to rest at any moment possible. Find someone to help so you can nap comfortably.

Have you tried SlowFE Iron with Folic Acid? I take them at bedtime every few days and wake up with energy. I just recently started taking B Vitamins. I don't know if you are breast feeding, but you might consider drinking a Gatorade or Powerade each day to put back some electroliltes. This might sound hokey but it works. Eating jello also helps. All are gluten-free. They take the light-headedness away. Sometimes it's the simple things that work. Also drink a boost (chocolate is my favorite).

While I was pregnant I tried eating everything I could think of that was healthy even if it never agreed with me in the past. I thought I was doing the baby good. Actually I was ruining my digestive system and felt like I was dying of starvation even when I was eating a lot.

I was so weak. I also had diarrhea. My head felt like it was grinding. I couldn't take it anymore. I told my husband to take me to the hospital. The nurse took my blood pressure while I was sitting up and then while I was laying down. I was admitted to the hospital for tests because it fluctuated too much. My electrolites were way off. After testing they said I had Ulcerative Colitis and almost removed my whole large intestines. Thank God they didn't. Years later I went on a gluten-free diet and started digesting food again and went off all Colitis medicine.

I'm not a professional, just giving you info on my experiences. Don't give up trying to find the answers.

Take care of yourself!

[loraleena]

Hi. I too have hashimotos. It does sound like you are gluten intolerant. This can trigger thyroid issues as well. Are you taking synthroid? If so, this does not help a lot of people. It is T4 alone and you may need a med with T3 as well such as Armour or cytomel. Also, if you are not taking enough thyroid hormone it can make you worse. Your doc should be checking more than just TSH which is useless. My doc goes by my thyroid peroxidase antibodies. They should be less than 20. He also goes by symptoms. To read more about this check out Dr.Lowe.com. I found this sight years ago and he now treats my thyroid issues. Lots of great info.

[julie5914]

I couldn't find where you said if you had been tested for diabetes (probably type 1 because of the autoimmune trouble you have). Have you ruled that out? Please do if not. Pregnancy and giving birth most certainly sets this autoimmune stuff off for a lot of people (at least from what I have read and what my mom has experienced.) Perhaps you could also do an enterolab test to see if you are in fact intolerant to gluten (but maybe without celiac) or intolerant to casein. I'm so sorry you are having so much trouble. Keep searching hard for answers, and it will be get better. I was diagnosed with celiac last year and for the year before and the first 6 months on the diet I was miserable. Now I hardly ever even think about it because I feel normal!