Thalassemia Patients and Friends

Discussion Forums => Living with Thalassemia => Topic started by: pinks on March 31, 2008, 05:02:06 PM

Title: fertillity plz help me
Post by: pinks on March 31, 2008, 05:02:06 PM

hi im new to this site but found it very usefull i wanted some info i have thalassaemia major married and 29 year old i want to start a  family now i not had periods for 3 years now an wanted to know what fertillity treatmenys would i need has anyone had this problem any info would be great thanks

Title: Re: fertillity
Post by: Andy Battaglia on April 01, 2008, 11:08:21 PM

Hi Pinks and welcome,

I will try to get one of the thal major moms to respond to your post.

Title: Re: fertillity
Post by: pinks on April 02, 2008, 07:21:43 AM

thanks that wold be great

Title: Re: fertillity plz help me
Post by: sydneygirl on April 14, 2008, 12:04:00 PM

Hi pink,
you may need to go on the fertility induction programme,what country are you in?

Title: Re: fertillity plz help me
Post by: pinks on April 14, 2008, 03:31:16 PM

hi
thanks so much for replying im in uk, leicester, whats that

Title: Re: fertillity plz help me
Post by: Andy Battaglia on April 14, 2008, 05:02:31 PM

Hi Pinks,

Please contact The Leicester Fertility Centre Assisted Conception Unit.

Quote

Contact information

The Leicester Fertility Centre
Assisted Conception Unit
Kensington Building
Leicester Royal Infirmary
Infirmary Square
Leicester
LE1 5WW

E-mail: enquiries@leicesterfertilitycentre.org.uk

Website: www.leicesterfertilitycentre.org.uk
Assisted Conception Unit
Monday, Wednesday and Friday 07.30-17.30
Tuesday, Thursday 08.30-17.30
Tel 0116 2585922
Fax.0116 2587688

 For more information about fertility and thalassemic women, please contact

Quote

Fertility and Pregnancy in Thalassemia Major

SUSAN M. TUCK

Royal Free Hospital, London, United Kingdom

Address for correspondence: Susan M. Tuck, Royal Free Hospital, Pond St., Hampstead, London NW3 2QG, UK. Voice: 44-20-7794-0500, ext. 3184. Susan.Tuck@royalfree.nhs.uk

Over the last 15 years, 22 women with thalassemia major have completed 29 pregnancies at the Royal Hospital in London. The major pre-pregnancy issues, medications, and pregnancy care are reviewed. Experience suggests that, with proper care and guidance, pregnancies among women with thalassemia major are practical and can have successful outcomes.

Title: Re: fertillity plz help me
Post by: sydneygirl on April 27, 2008, 11:25:14 AM

Hi Pink,
I have lived in the uk myself and know in London there is a great hospital and they are great with fertility stuff its UCH in london,also the fertility induction programme is where you have hormone injections to get pregnant,thats usually if you have thal major and your partner does not,its quite complicated to explain and dont know if im explaining properly.You go through cycles so treatment 1 is cycle 1 and for 10 days per cycle you are given injections to increase your eggs to concieve.
someone else may be able to explain better.

Title: Re: fertillity plz help me
Post by: pinks on April 28, 2008, 07:21:38 PM

hi sydneygirl
Thank you so much i understand what your saying yeh i have thal major and my husband has nothings, i will tell my doctors in leicester to refer me to the uch hospital in london and see what thay can do for me :thumbsup thanks a lot for that

Title: Re: fertillity plz help me
Post by: Andy Battaglia on April 28, 2008, 07:41:22 PM

Hi Pinks,

Did you see the earlier post I did about the fertility center in Leicester?  http://www.thalassemiapatientsandfriends.com/index.php?topic=1625.msg13581#msg13581

Title: Re: fertillity plz help me
Post by: ye on February 17, 2009, 02:39:32 PM

in line with the post..
im 19 years old with beta thal major and i stopped menstruating for about 3 years now. does this usually happen to thal patients or should i be worried, i mean beyond the usual 'worry level'?? what should i do about it?

Title: Re: fertillity plz help me
Post by: Andy Battaglia on February 17, 2009, 04:02:00 PM

Hi Kaye,

What is your ferritin level. Interruption of the hormonal system is usually related to iron in the glands.

Title: Re: fertillity plz help me
Post by: ye on February 19, 2009, 03:44:19 PM

my ferritin level is really high, last time i checked it was at 9000. so i guess that is my problem. aside from lowering the ferritin, is there anything else i should do about it? tnx!

Title: Re: fertillity plz help me
Post by: Zaini on February 19, 2009, 05:52:11 PM

Hello Kaye,

Your ferritin level is very very high  :( what are you using for chelation? Please lower it down,you CAN do it,our member Umair also had very high ferritin levels,i think they were around 9000 once (umair correct me if i am wrong) but now with strict compliance to chelation he is below 3000.So i know with religious compliance with chelation you can do it,or that much iron can damage your organs.
What chelator are you using? Combination therapy of L1 and desferal is considered the best option for people with that much iron.do tell us about the chelator you are using and believe in your self that you can do it.

Zaini.

Title: Re: fertillity plz help me
Post by: Andy Battaglia on February 19, 2009, 06:07:08 PM

I would also highly recommend the use of antioxidants to help protect your organs and glands from iron damage. You need to work hard to lower your ferritin. You are at an age where problems will soon develop unless you make the decision to turn things around. We can give you plenty of advice, but you have to make a real commitment to chelation.

Title: Re: fertillity plz help me
Post by: Canadian_Family on February 19, 2009, 08:04:42 PM

Quote from: ye on February 19, 2009, 03:44:19 PM

my ferritin level is really high, last time i checked it was at 9000. so i guess that is my problem. aside from lowering the ferritin, is there anything else i should do about it? tnx!

What chelation drug you are using and how frequent and in what doses. Please keep in contact with the group and keep us posted. You will get a lot of help and advice on this forum.

Title: Re: fertillity plz help me
Post by: Manal on February 20, 2009, 01:07:10 AM

Ye, i agree too about lowering the ferritin... You can do it and you will find us all backing and supporting you. All you have to do it to start complying,please

manal

Title: Re: fertillity plz help me
Post by: Teacher with Thal. on February 20, 2009, 03:24:29 PM

Hello!  I wanted to let you know that I was under fertility treatment last summer and am currently 27 weeks pregnant.  I am 33 years old, and a Thal major patient as well.  So far, thanks to lots of prayers, I have had a healthy pregnancy and the baby is doing good too!  My ferritin was pretty high when I got pregnant, a little under 5000.  I had to stop taking desferol when I found out I was pregnant, and I won't start it again until after the baby is born.  Before you start anything, make sure each of your doctors is up to date on what you're doing (going through fertility treatment) and that you get their approval...that includes the cardiologist, hematologist, fertility doctor, high risk pregnancy doctor, etc.  The fertility meds I took include Menopur, Ovadril, and then HCG (they were all self injected shots).  I also started taking prenatal vitamins without iron.   I got pregnant within 2 -3 months, after they figured out how much Menopur my body needed.  Feel free to ask me any questions.

Title: Re: fertillity plz help me
Post by: Manal on February 20, 2009, 03:55:47 PM

Teacher with thal

I am really so happy to hear the wonderful news. Congratulations and i hope you will have a safe delivery and a wonderful baby. Eat well and take care

keep us updated

manal

Title: Re: fertillity plz help me
Post by: Zaini on February 20, 2009, 04:55:19 PM

Teacher with thal,

Your story is really encouraging for us all,especially for me who has a daughter with thal and to whom people often ask " who will marry your daughter ?"

Thanks for being a ray of hope . Wishing you all the best with your pregnancy,please do share with us the good news when it arrives.

Zaini.

Title: Re: fertillity plz help me
Post by: Sharmin on February 20, 2009, 07:37:52 PM

Teacher with thal,

Congratulations on your pregnancy, I wish you a healthy pregnancy and delivery. Please keep us posted - especially when your little one arrives :)

Sharmin

Title: Re: fertillity plz help me
Post by: jade on February 21, 2009, 04:48:37 AM

Hi Teacher with Thal

This is wonderful news.  Congratulations and take good care of yourself and your baby.

Jade

Title: Re: fertillity plz help me
Post by: Teacher with Thal. on March 21, 2009, 01:03:09 AM

Thank you everyone for your sweet messages!  I don't even know you, but I can feel the love.  Once again, thanks to prayers, my pregnancy continues to go well.  My ferritin levels even dropped to 2500 (that's a 50% drop).  On Sunday, I'll be in my 32nd week of pregnancy and everything continues to go well for me and the baby.  I'm even able to continue to teach my 20 little third graders.  For the last 2 months, I have been getting transfused every other week.  Continue to keep me and my baby girl in your prayers.  I'll continue to keep you updated.  Thanks for all the love and support!

Title: Re: fertillity plz help me
Post by: Zaini on March 21, 2009, 06:17:55 AM

Dear teacher with thal,



                       (http://i147.photobucket.com/albums/r307/freecommenttags/Religious/SendingPrayersYourWay.gif)

Zaini.

Title: Re: fertillity plz help me
Post by: Sharmin on March 21, 2009, 06:23:03 AM

(http://www.legendsofamerica.com/postcards-pictures-of/VN-1007-Best%20Wishes.jpg)

Sharmin

Title: Re: fertillity plz help me
Post by: SF on March 22, 2009, 09:46:33 AM

I'm so happy to hear your success story, teacher with thal!! Wish you all the best with the rest of your pregnancy and delivery!! :goodluck

Related to this topic: I still get my periods, thank God! However, I'm noticing they're becoming a bit irregular, which is quite the case with thal females, I think.  Another reason I should comply with chelation more...  :(
Best,
-SF

PS. I was hoping someone would bring up such topic or I was thinking about starting a thread on Thal related female issues.. happy to see this topic appear on this forum! (as I'm usually VERY shy when it comes to discussing about this topic)

Title: Re: fertillity plz help me
Post by: Canadian_Family on March 22, 2009, 10:02:26 PM

Quote from: Zaini on February 20, 2009, 04:55:19 PM

Teacher with thal,

Your story is really encouraging for us all,especially for me who has a daughter with thal and to whom people often ask " who will marry your daughter ?"

Zaini.

Zaini,

I certainly got upset if people are asking this insensitive question. Please go tell them, its not their business who will marry my daughter. Right now I pray that some day your and my daughter will be posting on this forum and talking about their pregnancy and sharing experiences. God willing.

Truly....

Title: Re: fertillity plz help me
Post by: Manal on March 22, 2009, 10:05:21 PM

Quote

PS. I was hoping someone would bring up such topic or I was thinking about starting a thread on Thal related female issues.. happy to see this topic appear on this forum! (as I'm usually VERY shy when it comes to discussing about this topic)

SF
Please feel free to discuss what ever concerns you, it is important to have answers to any of your concerns and you are always welcomed to PM me, Sharmin and Zaini. Any of us will do our best to help you or make you in contact with someone who will help :hugfriend

Quote

I'm noticing they're becoming a bit irregular

I think this is so much related to elevated iron levels that when loaded in the body organs cause changes in levels of hormones. SF, please consider IV desferal, it will help lowering the iron levels

manal

Title: Re: fertillity plz help me
Post by: Zaini on March 23, 2009, 06:45:46 AM

Canadian Family  :hugfriend

Thanks for the support,yes my prayers are as same as yours,for all the thal kids.

Zaini.

Title: Re: fertillity plz help me
Post by: SF on March 24, 2009, 08:18:20 AM

Thank you, Manal  :hugfriend   I appreciate your support!
Actually while looking at my last lab results and researching on the topic of TSH (Thyroid hormone) levels.. I'm thinking it could be due to over-activity of thyroid.. My levels are normal but towards the lower end of the range.. Another cause could be the lack of exercise in my daily routine.. I've noticed when I am more active, things are better.. I'll have to figure this one out..  :huh
All this, however, started when I first went on Exjade... Back then, I used to be much more active and healthier. I still believe Exjade had something to do with it.. it messed me up.. I'm not the only one, another thal gal at Oakland Children's also experienced the same when she went on Exjade... I wonder if it's documented as a side effect  ???

Regards,
SF

Title: Re: fertillity plz help me
Post by: Dori on March 24, 2009, 03:58:10 PM

 :congrats

Best wishes, Dore

Title: Re: fertillity plz help me
Post by: Manal on March 24, 2009, 09:10:16 PM

Hi SF

It is the first time for me to know that exjade can have such effect, usually the side effects are more related to liver and kidney fuctions, but i will research on that and let you know if i find anything that support your observation

Until then have a great day

manal

Title: Re: fertillity plz help me
Post by: Dori on March 28, 2009, 08:37:32 PM

Quote from: SF on March 22, 2009, 09:46:33 AM

I'm so happy to hear your success story, teacher with thal!! Wish you all the best with the rest of your pregnancy and delivery!! :goodluck

Related to this topic: I still get my periods, thank God! However, I'm noticing they're becoming a bit irregular, which is quite the case with thal females, I think.  Another reason I should comply with chelation more...  :(
Best,
-SF

PS. I was hoping someone would bring up such topic or I was thinking about starting a thread on Thal related female issues.. happy to see this topic appear on this forum! (as I'm usually VERY shy when it comes to discussing about this topic)

a bit irregular

Me too, it is also a big suprise when it comes. LOL. The most funny part: I thought you were a male!
(Yea, I am also a way to shy to talk about this)

Excuses me, what cause Exjade? More activite or less? (Manal)

Title: Re: fertillity plz help me
Post by: Manal on March 28, 2009, 10:23:04 PM

Dore

Quote

Excuses me, what cause Exjade? More activite or less? (Manal)

I was just questioning if exjade can cause irregular periods as SF said and i am looking for this but till now i didn't find such effect but i am still looking. I hope i understood your question right. Is this what you are asking about??

manal

Title: Re: fertillity plz help me
Post by: Andy Battaglia on March 28, 2009, 11:04:31 PM

I have never heard that chelators affect the monthly cycles. It is almost certain this is related to iron in the glands. I have talked to women who reached menopause by age 18. This is due to iron overload and its effect on the glands, especially the pituitary gland. One more reason to use antioxidants to protect from iron damage.

Title: Re: fertillity plz help me
Post by: Dori on March 29, 2009, 11:21:33 AM

Quote from: Manal on March 28, 2009, 10:23:04 PM

DoreI was just questioning if exjade can cause irregular periods as SF said and i am looking for this but till now i didn't find such effect but i am still looking. I hope i understood your question right. Is this what you are asking about??

manal

Yes, I asked about that. It is true what Andy says. Thank god, my glands were not affected by iron.

Title: Re: fertillity plz help me
Post by: katerina on April 13, 2009, 05:47:52 PM

hi, my name is katerina. i am from Greece, i am 39 years old, thal major patient. i am not a mum althought i tried hard to get pregnant, but i know many about fertility methods since i have tried hormone therapy, sperm infussion and in-virto fertilization. you should discuss your problem with an endocrinologist or a gynecologist but i am almost sure that you will need hormone therapy to start with. if yoy want to ask more please don't hesitate to get in touch. good luck

Title: Re: fertillity plz help me
Post by: Manal on April 13, 2009, 11:47:40 PM

Hi Katerina and welcome to the site, i am sure many will benefit from your expierence. Wishing you all the best

manal

 :welcome2 :welcomewagon :welcomewagon :welcomewagon :welcomewagon

Title: Re: fertillity plz help me
Post by: Dori on May 11, 2009, 12:55:02 PM

Quote from: katerina on April 13, 2009, 05:47:52 PM

hi, my name is katerina. i am from Greece, i am 39 years old, thal major patient. i

Welcome on board.  :welcomewagon

I know a few friends (with thal) who have hormone therapy. My blood tests are good, so then you don't see such doctor. Though I still would find it a good idea for me to visit one. Those people are speciales so they really can say of i should trust the blood tests or not.

Please, don't hesitate to share your information, experience and thoughts with us.

 :flowers

Dore
(22yr not thal, but rare hemolytic anemia pyruvate kinase deficiency)

Title: Re: fertillity plz help me
Post by: Canadian_Family on May 11, 2009, 02:41:04 PM

Quote from: katerina on April 13, 2009, 05:47:52 PM

hi, my name is katerina. i am from Greece, i am 39 years old, thal major patient. i am not a mum althought i tried hard to get pregnant, but i know many about fertility methods since i have tried hormone therapy, sperm infussion and in-virto fertilization. you should discuss your problem with an endocrinologist or a gynecologist but i am almost sure that you will need hormone therapy to start with. if yoy want to ask more please don't hesitate to get in touch. good luck

Your first post offering help, I'd say Impressive.

Thanks

Title: Re: fertillity plz help me
Post by: Sharmin on May 11, 2009, 03:03:55 PM

Katerina,

Welcome to thalassemia patients and friends!

Sharmin