13 weeks pregnant, age 40, Thal Minor, anxious about everything

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Hi Andy and anyone who can help (and sorry for the long and detailed post!)

I'm hoping you can guide me a little here as I've become a nervous wreck since becoming pregnant for the first time. I thought I only had to worry about my age (almost 41), and never realised that being (beta) Thal Minor was also such an issue until I read these posts (all my life I thought I only had to avoid a partner with Thal Minor! thankfully hubby is all clear so one less worry). Now I stress every day, which I know isn't good either for myself or the baby. I am utterly scared about miscarriage and problems later on. I guess I'm looking for reassurance but also realism, as to how much I need to worry and what action I need to take.
So far ultrasounds show everything going well with the pregnancy, however I did have a small subchrionic haemtoma (SCH) at the beginning (shown at 8 week scan) which then appeared to heal itself by the 10th week and by the 12th week there was no sign of it.

Here are my blood results (tested at 10 weeks):

Hb 93 (yes quite low but midwife not overly concerned yet - I explained I'm Thal M and that can affect the result so I requested Iron Studies which they then agreed to do)
Platelet Count - 331
Haematocrit L 0.29l
Mean Cell Hb L 20.4 pg
Mean Cell Hb Concentration 320 gram/L

Iron Studies test:

Iron 28.6 mcmol/L (seems normal?) 
Total Iron Binding Capacity Serum L51.0 mcmol/
Percentage Iron Saturation H 56.1%
Ferritin Serum * 44 micrograms (not sure if the asterisk is a bad sign!?)
Vit B12 Serum 535 nanograms
Folate Serum * >20.0 micrograms

I recall at the time of the midwife going through the NHS assessment of whether I was at risk of thrombosis, I didn't know enough at the time about Thal minor; I had recalled some association with clotting but not enough to warrant me saying anything for sure, so she didn't tick the boxes or refer me on for more testing, and later I checked the list and it only showed sickle cell as being a reason to be automatically referred to the Thrombosis team. She also said they only do iron transfusions if someone has low Hb, not blood transfusions.
She was a bit surprised at my low blood pressure at 12 weeks (I didn't get the exact figure from her) - but she said as long as I feel fine then it's ok - I had meditated that morning and meditation is meant to lower BP so it could have been that, or as you have said Andy, Thal M can tend to keep BP low.
My chinese acupuncturist says that I look a little too pale for her liking and my fingernail beds aren't as pink as she would like (that's the Thal and probably low iron state in pregnancy anyway), and I do get out of breath easily when going up the stairs but I usually had that pre-pregnancy also, though not as much. I have been tired often throughout first trimester (normal pregnancy symptom so I can't be sure how much is due to Thal M/low iron) and I can't do as much in one day as I used to (but I can still get out and about, I certainly don't need to stay in and sleep all day)
 
Due to the number of questions I have I will number them to make them easier to read/answer:

(please know that as annoying as all these questions might be, I will be ETERNALLY GRATEFUL if you took the time to answer them all, there's so much at stake for me being a first time mother at this age, not knowing if I will get the chance again...)

1. Am I less likely to miscarry if I am past 13 weeks or does that not make a difference if one is Thal Minor, because problems can usually occur later? Are stillborns more of a risk with Thal M?

2. The cleared up SCH is good news but I guess it shows I'm predisposed to more placental issues/possible clotting later on, would you agree? Or is it a good sign that my body was able to 're-absorb and repair' the clot?

3. I seem to have good/normal platelet count and I read somewhere that a normal platelet count indicates that you do NOT have a clotting problem, but I'm not sure if this is a reliable indicator?

4. Should I ask for regular Hb blood level checks and if I dip below 8 then I should get a blood transfusion (and not just an iron one?), or if they won't do regular testing then can I simply rely on gauging whether I feel suddenly dizzy or faint to go in for a checkup?

5. Although I don't ever feel dizzy or faint, I still struggle with doing a full day (long winter doesn't help), so I guess that's an indication of low iron - what do you make of all my blood results and whether I need extra iron supplementation/a blood transfusion?
(I can't tell if my iron is just acceptable or not (online figures are so confusing as different countries use different measurements and ranges) - the midwife wasn't concerned about my results, she said they're near normal especially my Iron, Iron Saturation levels, B12 and Folate levels, however I have little faith in western medicine especially re the intricacies around Thal - and actually it looks like Iron 28.6 is normal but 44 mg Ferritin is quite low!)

6. Should I change my folic acid supplements to l'methylfolate instead? (and do I need to keep taking them throughout the whole pregnancy? Is folic acid only needed for preventing neural tube defects which won't be an issue past 12 weeks or is it still needed in high quantities for a successful pregnancy due to my Thal M?)

7. Is my lower blood pressure a problem, how does low BP affect pregnancy and if so, what should I do about it - I guess it's better than having high BP right? ie. risk of pre-eclampsia, but then I read from you Andy that Thal can cause one to have low BP and therefore think all is ok on that front when in fact it may not be...

8. I read that O positive blood type (which I am) tends to be thinner blood and therefore blood thinners are not advised, that they can increase the risk of placental abruption instead of prevent it...what are your thoughts on this?

9. I am concerned about taking both Vitamin E and Aspirin as there have been studies showing birth defects from their use in pregnancy, though low dose aspirin seems to be ok I'd rather not take that risk if I don't have to...and the Vit E study said it was not considered safe even in daily recommended doses during pregnancy, though the study had flaws (don't they all?? just to make it doubly confusing!) - what are your thoughts?

10. If O positive blood is thinner, am I better off getting regular detailed ultrasounds instead to check for placental clots/blood flow issues rather than go straight on aspirin (which they recommended simply due to my age)?

11. Should I demand a thrombophilia test to rule out clotting disorders/antiphospholid syndrome before considering taking aspirin (or Heparin which they would put me on if a clotting disorder is confirmed)?

12. Is placental abruption only a risk if one has a clotting issue, or does low iron have anything to do with risk to the placenta? You mention a sudden drop in Hb being problematic - is that more for the mother's general health or also for the baby directly? Do you know what a sudden low iron dip does to a foetus and is it common enough for me to worry about? (I'm a worrier anyway as you can probably tell! ;))

13. Do you recommend Floradix as a natural iron supplement or should I start eating red meat again (I'm generally a veggie but am scared about ingesting undercooked meat)? I read that Floradix won't make a difference to Thal Minors due to how they metabolise iron, but from what you can see on my iron studies should I try taking it or will it risk iron overload? (which I've heard can have equally negative birth outcomes)

14. Can iron overload due to iron transfusions cause issues with placenta/baby?

15. If the baby has Thal Minor from me, will that affect anything during the pregnancy ie the foetus' survival?

16. In your opinion, is my combination of older maternal age and Thal Minor a recipe for disaster or do I still have hope?? :)

Again, thank you SO MUCH in advance for taking the time to read/reply - I put a lot of effort into this post and am mostly looking for a response from Andy as he knows a lot about this topic but equally anyone is welcome to chip in to help me calm my nerves!  :-\

Best wishes
J



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Offline Andy Battaglia

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Re: 13 weeks pregnant, age 40, Thal Minor, anxious about everything
« Reply #1 on: February 28, 2018, 01:53:35 AM »
1. Am I less likely to miscarry if I am past 13 weeks or does that not make a difference if one is Thal Minor, because problems can usually occur later? Are stillborns more of a risk with Thal M?
You're not past the stage when you could miscarry. We have had reports of miscarriage in thal minors past 20 weeks.

2. The cleared up SCH is good news but I guess it shows I'm predisposed to more placental issues/possible clotting later on, would you agree? Or is it a good sign that my body was able to 're-absorb and repair' the clot?
It is a good sign that your body repaired the clot, but no guarantee it won't happen again. I would say because of the SCH, any blood thinner like aspirin or vitamin E should be approved by your doctor.

3. I seem to have good/normal platelet count and I read somewhere that a normal platelet count indicates that you do NOT have a clotting problem, but I'm not sure if this is a reliable indicator?
Because some of the problem is not actually caused by platelets, but by debris from the breakdown of defective red blood cells, the normal platelet count can't give the entire picture. More relevant is the growth of the fetus. Normal growth shows a normal blood flow between the placenta and uterus, which greatly reduces the chances of miscarriage.

4. Should I ask for regular Hb blood level checks and if I dip below 8 then I should get a blood transfusion (and not just an iron one?), or if they won't do regular testing then can I simply rely on gauging whether I feel suddenly dizzy or faint to go in for a checkup?
Hb should automatically be checked when pregnant, even for non-thals. Transfusion isn't normally considered until the Hb drops below 8, and at this point, judging from your iron numbers, an iron infusion isn't needed at this time. That could change. Keep in mind that some of the reduction in Hb is related to the added water volume you carry while pregnant, so your true Hb is higher.

5. Although I don't ever feel dizzy or faint, I still struggle with doing a full day (long winter doesn't help), so I guess that's an indication of low iron - what do you make of all my blood results and whether I need extra iron supplementation/a blood transfusion?
(I can't tell if my iron is just acceptable or not (online figures are so confusing as different countries use different measurements and ranges) - the midwife wasn't concerned about my results, she said they're near normal especially my Iron, Iron Saturation levels, B12 and Folate levels, however I have little faith in western medicine especially re the intricacies around Thal - and actually it looks like Iron 28.6 is normal but 44 mg Ferritin is quite low!)
What you report is normal for thal minors, even when not pregnant. So many minors have told us that they find a need for a nap during the day, as they can't manage without it. This may have no relation to iron and as far as iron, it's best to maintain an iron rich diet during pregnancy, and hopefully infusion won't be needed at any point. Your folate level is at the high end, which is really where you should want to see it right now. Your B12 looks good, but it is best near the high end of normal for thal minors, so don't let anyone make you think it's high enough. Your ferritin is still within range and needs to be looked at in context with the other iron numbers. You may be able to get enough iron by dietary adjustments, alone.

6. Should I change my folic acid supplements to l'methylfolate instead? (and do I need to keep taking them throughout the whole pregnancy? Is folic acid only needed for preventing neural tube defects which won't be an issue past 12 weeks or is it still needed in high quantities for a successful pregnancy due to my Thal M?)
I doubt you have any issue converting folic acid to folate, based on your folate level. L-methylfolate is the preferred type, but if cost or access is an issue, there's no urgency to switch.

7. Is my lower blood pressure a problem, how does low BP affect pregnancy and if so, what should I do about it - I guess it's better than having high BP right? ie. risk of pre-eclampsia, but then I read from you Andy that Thal can cause one to have low BP and therefore think all is ok on that front when in fact it may not be...
Low BP is very common in thal minors. As long as you don't develop a water retention issue, a little extra salt won't hurt and will help keep your BP up. If you do feel dizziness, try a little salt and some water to see if it passes.

8. I read that O positive blood type (which I am) tends to be thinner blood and therefore blood thinners are not advised, that they can increase the risk of placental abruption instead of prevent it...what are your thoughts on this?
I mentioned above, because you had an SCH, you should consult your doctor before using any blood thinner.

9. I am concerned about taking both Vitamin E and Aspirin as there have been studies showing birth defects from their use in pregnancy, though low dose aspirin seems to be ok I'd rather not take that risk if I don't have to...and the Vit E study said it was not considered safe even in daily recommended doses during pregnancy, though the study had flaws (don't they all?? just to make it doubly confusing!) - what are your thoughts?
Again, because of the SCH, ask your doctor what is safe to use, if anything, during the pregnancy. An alternative is making sure you are getting foods rich in vitamin E, which can be found easily by searching online.

10. If O positive blood is thinner, am I better off getting regular detailed ultrasounds instead to check for placental clots/blood flow issues rather than go straight on aspirin (which they recommended simply due to my age)?
I think the ultrasounds should be done regardless and aspirin, only of your doctor agrees it is safe after the SCH.

11. Should I demand a thrombophilia test to rule out clotting disorders/antiphospholid syndrome before considering taking aspirin (or Heparin which they would put me on if a clotting disorder is confirmed)?
I would suggest the test, if they will approve it, and the fact that you had the SCH may push them in that direction.

12. Is placental abruption only a risk if one has a clotting issue, or does low iron have anything to do with risk to the placenta? You mention a sudden drop in Hb being problematic - is that more for the mother's general health or also for the baby directly? Do you know what a sudden low iron dip does to a foetus and is it common enough for me to worry about? (I'm a worrier anyway as you can probably tell! ;))
A sudden drop in Hb is of more danger to the mother than the fetus and has nothing to do with iron. This is usually the result of blood loss. Low iron could mean an anemic baby, but the body favors the fetus over the mother, so it usually isn't a problem after the birth.

13. Do you recommend Floradix as a natural iron supplement or should I start eating red meat again (I'm generally a veggie but am scared about ingesting undercooked meat)? I read that Floradix won't make a difference to Thal Minors due to how they metabolise iron, but from what you can see on my iron studies should I try taking it or will it risk iron overload? (which I've heard can have equally negative birth outcomes)
I prefer an iron rich diet over any iron supplement. I am a vegetarian and reversed severe anemia caused by surgery solely by diet, as iron did not agree with my stomach. I suggest an iron rich diet and it does not require red meat. Keep in mind that taking vitamin C or citrus with iron rich veg meals increases iron absorption from food. Avoid tea and milk with veg meals, as they inhibit iron absorption. If you have to take iron, Floradix is a better choice than many. Spatone iron water can also be considered.

14. Can iron overload due to iron transfusions cause issues with placenta/baby?
You won't get iron overload that quickly and it poses no danger to the fetus. Your body will regulate what the fetus gets.

15. If the baby has Thal Minor from me, will that affect anything during the pregnancy ie the foetus' survival?
No.

16. In your opinion, is my combination of older maternal age and Thal Minor a recipe for disaster or do I still have hope?? 
I don't think there is any added risk from your age. This is a problem that is changing as women take better care of themselves and understand more about living a healthy lifestyle. I would say that has far more to do with the success of a pregnancy than age.

Eat well, stay well hydrated, avoid junk food and get exercise. A healthy lifestyle gives you a much better chance of a successful pregnancy. It is no sure thing, because of the thal, but it does improve your chances of success.

Andy

All we are saying is give thals a chance.

Re: 13 weeks pregnant, age 40, Thal Minor, anxious about everything
« Reply #2 on: March 11, 2018, 06:04:48 PM »
Hi Andy

Thanks very much for your response. I thought I'd wait until after I met with an Obstetrician to respond back. Regarding the SCH and aspirin, I was told that only if I currently had a SCH and was symptomatic (I guess that means bleeding/spotting, which I did have a little of when I had the small SCH) would aspirin not be advised. She also said a SCH often occurs around the time of implantation and then heals itself and doesn't re-appear again later (hopefully). So I'm on the aspirin now (plus Floradix) and still appear to be going along at almost 16 weeks. She asked if I had seen a Hemotologist and I said no, could she refer me to one, but she said no, there is no real need, she was just curious because I might have had one before knowing about my Thal.

I'm still hesitant to take Vitamin E but I'm getting to the point now of preferring to have a live baby who might possibly have a heart condition from Vit E supplementation (which hasn't been proven at all by the way), than no baby at all! So I might start taking that also, because aspirin is a platelet aggregate-inhibitor, not an anticoagulant as such, so Vit E could take on that role. Though again, I hear that O positive blood is thinner anyway so it might not be necessary - however there's no way of knowing for sure if one cancels out the other, and as the OB said, when you are pregnant you are in a thrombophilic state regardless of any other factors. This is why she said a thrombophilia blood assessment is not necessary, because being pregnant makes the test results hard to interpret, and they are best done before getting pregnant (she also said I would 'know' by now if I had a clotting disorder). I've read other articles to back this up, so I might give up on the thromb testing however I am curious about the MTHFR mutation, as I know it will show up on the test regardless of pregnancy and if I do have it then surely that is a reason to take blood thinning medication!

As predicted the OB played down the Thal Minor and said plenty of women she's seen with it have babies successfully. She did however agree to get my iron checked again in a few weeks and advised iron supplementation as she said that I am slightly iron deficient according to the iron studies (Iron binding capacity was 51 and the normal is 53, so not too far off but still classed as deficient) - she said Floradix is fine but it's lower dose than the tablets but she's not too concerned at this stage as my iron isn't that bad, hence why she wants to test again after I take the Floradix and see if it's raised/lowered.

Regarding your suggestion around the folic acid - I gather it is important to continue taking this all the way through pregnancy as it helps to raise Hb? (we are often told it's only necessary up until 12 weeks)

I have read your other posts stating that blood transfusions may help to prevent miscarriages because they bring in more 'healthy' blood to counteract the damaged RBCs in Thal Minor - it almost sounds like something I should ask for even if my Hb is higher than 8!? My hospital only do iron infusions to my knowledge so should I be trying to get access to a blood transfusion somehow or is it only considered if there is an issue with Hb? (even if I tried to get one done privately I'd imagine they need a good reason)

Looking forward to your response
Many thanks
J

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Offline Andy Battaglia

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Re: 13 weeks pregnant, age 40, Thal Minor, anxious about everything
« Reply #3 on: March 15, 2018, 11:58:58 PM »
There are huge deficiencies in the study of vitamin E and birth defects, and the authors admit it in their discussion. One major admission is that they could have easily miscalculated actual doses women took, which by itself, makes the study worthless, as they can't show any difference in dosing between their groups. They also admit that almost all supplementation of vitamin E is done with a multivitamin. What they fail to mention is that most multivitamin products use synthetic vitamin E, which is an industrial waste product that should be avoided. I always insist that people take the natural vitamin E, only. With that said, I still can't say for sure if you should take it because of the prior problem and because you are already taking aspirin. Another study which found no special use for vitamin E in pregnancy, nor any harm, did mention something most relevant to the discussion about thal pregnancies.
http://www.cochrane.org/CD004069/PREG_vitamin-e-supplementation-pregnancy
Quote
There was a reduction in the number of placentas coming away early (placental abruption) in women given vitamin E supplements in combination with other agents, which was rated as high-quality evidence. However, it is unclear whether this finding was due to vitamin E or the other agents used in the supplement. This should be explored in further research examining the mechanisms leading to placental abruption.

Folate is required to build red blood cells and the higher production of red blood cells in thal minors means there is a higher ongoing demand for folate and this increases during pregnancy. I have had many people mention that it works better for raising Hb when taken with B-12. Many minors take it regularly. I do recommend it for the entire pregnancy.

Blood transfusions usually won't be considered unless the Hb drops below 8 and many doctors won't transfuse unless it drops below 7. Iron will be of limited value if your numbers are close to normal. It may help stabilize the Hb. During pregnancy, there is a higher need for all nutrients involved in building blood cells, including iron. A high iron diet is always the preferred method, but during pregnancy, that may not be enough. I think you'll have to see how your Hb goes as the pregnancy goes along. If it stays stable, you're better off without a transfusion.
Andy

All we are saying is give thals a chance.

Re: 13 weeks pregnant, age 40, Thal Minor, anxious about everything
« Reply #4 on: March 17, 2018, 02:01:46 AM »
Hi! I just wanted to chime in and say I can't answer any of your questions but I'm beta thal minor and had my first (and only--because: too old & tired for another! :) ) child at 41 with no problems, no complications. At the time I was not aware that there could be issues because I wasn't on this forum. I took the Floradix that the midwife recommended, along with a prenatal. The nurse-midwives I saw knew about my thal-minor status but probably weren't familiar enough with it to feel concerned about anything. You also mentioned the MTHFR mutation--I have (only recently discovered) what they call the combined heterozygous mutation. I had no idea about it at the time I was pregnant.

Baby was born full-term. She was on the small side at about 6.5 lbs but both my husband and I were small babies so I figured that was just genetics.

I hope this helps allay your fears a bit! Thal-minor aside, the medical establishment seems to want to scare older moms but sometimes things work out just fine. :)


Re: 13 weeks pregnant, age 40, Thal Minor, anxious about everything
« Reply #5 on: March 24, 2018, 03:25:53 PM »
Hi Andy (and ATAV), thanks again for your response. Unfortunately my obsessive googling got the better of me and I found another study stating that Vitamin E can increase the chance of stillbirth. https://www.telegraph.co.uk/news/uknews/3340667/Pregnant-mothers-warned-of-risk-to-baby-in-vitamin-E.html

I'm sure this study too has flaws (in that it can't really differentiate what caused the higher rates - the Vit E or the high Vit C supplementation, as they were both taken together! I just wish at least one study would involve sole Vit E (and the natural version) supplementation and birth outcomes), but again, I just feel comfortable to take any chances considering how fragile this opportunity seems to be for me.

So I think, considering I am also taking the aspirin, that I will forego the Vit E and try to increase my intake of food sources such as olive oil (which I have a lot of anyway).

ATAV - thanks for the support, that is encouraging that you got through it with both thal minor and being over 40, AND having the dual gene mutation! That's amazing that it didn't cause problems. I've been told that the results of such a test won't be accurate during pregnancy (it's best done before/after) but I'm not sure if that's true specifically with the gene mutation, you'd think it would show up regardless.

Currently I'm 17 weeks and have seen the baby on ultrasound - I don't know actual measurements yet but she seems to be on track albiet on the small side, this could be due to the thal or it could also be due to my partner and I not being big people, and I was born quite small and premature myself. Let's see what happens...I don't think I'll stop being anxious until a baby is in my arms! If this doesn't work out, despite how old and tired I am, I don't want to give up yet...especially as donor eggs are a possibility I am willing to consider.

21 weeks pregnant, almost 41, Thal Minor
« Reply #6 on: April 22, 2018, 08:45:58 PM »
Hi Andy

Just thought I'd give an update and also seek your advice. I've been upping my intake of Vitamin E foods such as almonds. The baby is measuring compatible with dates so I'm hoping this means that so far the placenta is doing its job. Still taking Aspirin and Floradix regularly. My Hb has dropped again which is to be expected as I progress in the pregnancy, but I just wondered what you thought about my actual Iron studies and whether I should take the iron pills I have been prescribed and at what point should I be pushing for a transfusion (Hb is 8.5)?

1. It seems they just blindly tell me to take iron tablets to increase my Hb but does it actually do this in Thal Minors? Or should it only be taken based on the iron figures?

2. I'll show you the figures from blood tests taken recently (April) compared to those taken in March and late January, and it would be great if you could tell me whether you feel the Floradix has made a difference, whether I should take the tablets (which I don't like the thought of as they contain SLS, can cause constipation and I would have thought iron overload in Thal Minors), or whether I am actually in IRON OVERLOAD (which apparently can be deciphered by the Iron Saturation levels if they are over 50% which they are). And is there any other telling information you can see?

APRIL                                           MARCH                JANUARY (end of)
Hb - 8.5                                        8.8                       9.3
Platelet - 347                                 426                      331
Haematocrit - 0.276                       0.273                    0.291
RBC - 4.23                                    4.29                      4.56
MCV - 65.2                                    63.6                      63.8
RBC Distribution Width - 17.2          16.9                      16.8
MC Haemoglobin - 20.1                  20.5                      20.4
Iron - 29.9                                    28.6
Iron Binding Capacity - 56.5            51
Percentage Iron Saturation- 52.9%  56.1%
Ferritin Serum - 52                         44
Vitamin B12 Serum - 590                535
Folate Serum - 19.2                        >20.0

Many thanks in advance for your response.
J

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Offline Andy Battaglia

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Re: 13 weeks pregnant, age 40, Thal Minor, anxious about everything
« Reply #7 on: April 29, 2018, 05:12:31 PM »
I actually think there is some sign here that your iron has dropped slightly. The RBC has slowly dropped. RBC is high in thal minor and low in iron deficiency. The RDW has risen slightly and closer to the 18 level that indicates iron deficiency may be present. Iron binding capacity has risen slightly, showing your body is trying to absorb more iron. This is not a glaring deficiency, but it does show that your body is using more iron, which is expected during pregnancy. If the Floradix suits you, I would recommend that you continue it during the pregnancy.
Andy

All we are saying is give thals a chance.

 

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