I am new to this forum. I have had a lifetime of rare diagnoses. I have postural orthostatic tachycardia syndrome, neurocardiogenic syncope, and (they say Crohn's disease), and newly diagnosed with homozygous MTHFR. I also had toxic shock syndrome that nearly killed me at 14. I now found out that the scarring from the toxic shock may be why i have never gotten pregnant. My dream has been to bear children since my child hood. Everything in my life has to do with children and I would love to have my own. I am 28 years old...i have waited a loong time :) We were wanted to TTC last fall; however, other medical issues came up and I ended up in the hospital. Now, going to 8 different specialists, we have finally found out this last diagnosis as well as a possible problem with my thyroid and I have a genetic mutation for alpha 1 antitrypsin which deals with my lung functioning.
Does anyone else have these conditions? I was wondering if there was a possible correlation, but I have not seen any in the information I have found. I seem to be having trouble finding a lot of good information.
My doctor told me to wait at least 6 months, maybe a year, before trying to conceive. She is starting me on B12 shots and Neevo DHA. She said after I am finished having kids she would switch me to Deplin. And I will be on these for the rest of my life. Blood thinners/Levonox was not mentioned.
I have read the posts and have not seen others on these meds....anyone have any information regarding this? I have also gained 30 lbs in the last year and was wondering if there was any correlation that other members have found. I know something is not right, I have weighed the same for the past 10 years until this past year.
Thank you for your information/help and general support,
This has been a rough time for my husband and I. Although, we have not lost a baby...the dream we have for one has been shot down so many times with my other conditions, we are trying not to loose hope.
Also, does anyone have symptoms from this disorder? I realize the main focus is around pregnancy, but I was wondering if others are suffering from symptoms when not pregnant. I have so many conditions, i don't know what symptom is from what condition.
I am sorry to get to your answer so late. I have not had the medial issues you describe or rather the diagnoses that you have had but one thing I can tell you is that in my life time, when I did gain 40 pounds for no real apparent reason (three times) other then really not eating great (but that's normal for me so the weight gain was a surprise) I was put on a high protein diet which did consist of B12 shots. I am not sure if it was the high protein diet that did it or the shots, but I lost the weight rapidly and then got pregnant. (I also have a pituitary tumour that required a medication called Dostinex which I had to take in order to ovulate as well in order to conceive.) Now, it was only this year that I got my diagnosis of MTHFR compound heterozygous and was started on the Lovenox. But I am told that I would have to have the LD baby aspirin for the rest of my life pregnant or not.
I do notice from the ladies here and from other places, the common theme seems to be ovarian cysts, clotting, migraines, neuropathic pains (which I have to an extreme) and other symptoms, like weight gain or weight loss (which I have suffered both). When you talk about the recent weight gain, it makes me wonder if it could be hormone related or endocrine related. Have you seen an endocrinologist or specifically reproductive endocrinologist? Just out of curiosity do you have any issues with insulin? I have been hypoglycemic (low blood sugar) all my life and have sort of identified that my low blood sugar and high insulin could be related to the PCOS (ovarian cysts) or the MTHFR, but I am not 100% certain. No doctors could confirm this for me but they do seem interested in my idea of correlation. It's very strange considering my grandmother was diabetic, my parents are both borderline diabetics and here I am the opposite.
I am probably not much help with your other diagnoses but I thought that it might help to hear some of the issues that we each might have, which I always find helps me to bring to the attention of my MD's when we are investigating possibilities.
Perhaps the other ladies might have some additional info that they could add here.
In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns.
Good luck, and if you have any other questions that I can help you with, please feel free to message me directly.
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Thank you so much for this forum, your information, and support.
I actually had an appointment with my endocrinologist, yesterday. My thyroid is "off" but the TSH is not out of normal range and he didnt want "too many cooks in the kitchen" (meaning doctors that are dealing with me) So, he wanted to let the Dr that found this new diagnosis deal with this. He said this diagnosis was not in his range of care. He thought thyroid meds might help but wanted to hold off bc of this new diagnosis and to relay it to the internal doc. He also mentioned that if I have trouble conceiving then to ask to try at least a "trial" of thyroid meds and that should help with pregnancy. (My internal doc that found this diagnosis said to wait AT LEAST six months before trying to conceive) this also makes me nervous, do i need to wait longer? we are anxious to have a baby but want a healthy outcome.
My weight gain has been such an awful thing and no matter what I do, I just keep gaining. :( Would you mind if I ask more about the protein diet and B12's that they put you on? My dr started me on 1ml of B12 1/week for the first month and then monthly for life. No one has suggested anything about a diet, but that perhaps when I start having more energy from the B12 I will be able to exercise more. I have had my third shot(third week) and have not felt any difference. It is very disconcerting.
Have you been able to maintain your weight now? If you dont mind me asking.
I noticed you mentioned ovarian cysts. I have also had an ovarian cyst rupture one year ago. I also have neuropathic pain...the list is endless :(
I have had hypoglycemia my entire life until the past year in which they put me on a steady diet of gatorade to increase the sodium and electrolytes in my diet due to my postural orthostatic tachycardia syndrome/neurocardiogenic syncope conditions. The gatorade actually does help but i dont like the sugar. I finally figured out it is; however, leveling out my sugar level--it is now staying in the low/normal range.
I can't thank you enough for this forum and your help. Do you have any websites with more information of MTFHR (C677T, double mutation). I have only found a few with minimal information.
I am sorry to hear you suffering from so many conditions. Myself has thyroid problem too. I had thyroid cancer 10 years ago. So I was on suppressive dosage of thyroid hormone since then, until I had trouble getting pregnant after my first child. The normal range of TSH for normal people doesn't necessary good enough for women trying to get pregnant and maintain the pregnancy. Here are some links that you can read into.
I would say when trying to conceive, keep your TSH between 0.5 and 2 is better. After you get pregnant. Here is the optimal range.
First Trimester: 0.24 - 2.99
Second Trimester: .46-2.95
Third Trimester: .43 - 2.78
Also test your free T4 too. It's better to be in the upper half reference range than the lower half.
As to B12, in my case, I take Folgard, which is a folic acid, B6 and B12 complex. They are tablets, not shots. People with MTHFR problem cannot process folic acid efficiently so doctors prescribe extra like Folgard or the methyl form like in prenatal Neevo. B6 and B12 are to balance the extra folic acid we are taking. Not sure if you still need extra B6 and B12 if you are taking the methyl form of folic acid already as in Neevo. Also because you have homozygous MTHFR, it's better to have Lovenox shots too. Most doctors also recommends baby aspirin everyday. I was on it but stopped after stomach bleeds.
Wish you the best. It's not easy but you will get there.
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