Cmt and progesterone

[Shannah34]

Hi, does anyone have any knowledge of the effect of progesterone on cmt? I have cmt1a. Seems to be getting worse, I've had 2 children in the last 3 years and now use progesterone based contraception. Is it natural progression of cmt (I'm 39)? Could it be due to pregnancies or maybe the extra progesterone? Thanks.

[Happybeedaisy]

Hi Shannah34. I have the exact same concerns. There is some interesting research with rats to show improvement in cmt when an antiprogessterone treatment is given. I stopped oral contraceptive. I am also worried about having a baby as progesterone levels so high during pregnancy. What were your pregnancies like? Did you feel weaker afterwards? I even find I fall or trip more during my cycle when progesterone levels the highest. Just wish they'd listen to us and make some treatment. Take care. Gxx

[Happybeedaisy]

ncbi.nlm.nih.gov/m/pubmed/1...

[CMTUnitedKindom Partner in reply to Happybeedaisy]

Remember this is in a "model" of CMT - using, as you say, rats. Obviously, we're not rats, and therefore things may be a little different for us humans! For instance, Vitamin C caused a definite improvement in mice, but nothing in humans. So I wouldn't be too concerned about your progesterone levels.

As for listening to us and making treatments, there are researchers all over the world doing just that - but it's an incredibly complex condition with 66+ different genetic causes, and each and every one will need it's own separate drug, eventually. Obviously, most work is going on for the most common types, but it's still going to be a long, long process.

By the way, pregnancy does not cause CMT to get worse - it can feel like it, because of the tiredness and difficulty walking with that extra bulk, and as the person below mentions, caring for a baby/toddler is incredibly tiring (we're not different to anyone else there!), PLUS, CMT does cause fatigue - so add all that together and you're in trouble. It's all down to the normal balancing act of finding what you can do, not doing what you can't, and trying to cope in between.

I actually chose not to breastfeed at all - a deliberate conscious decision (very politically incorrect!) to preserve my energy for other things, and allow sharing of the load with others. I was particularly glad I did after I had my son, as it was a complicated c-section (he was badly presented and huge!) and I wasn't at all well afterwards - my husband was able to share the feeding, allowing me to rest and get myself well again. It can't have done them any harm - they're now 20 and 16 (both have CMT) and are doing really well.

Karen

[Happybeedaisy in reply to CMTUnitedKindom]

Thanks Karen, I think each of us are different and respond differently to hormones, etc. I'm glad you managed pregnancy and don't have sensitivity to progesterone but don't think we can make blanket statements about pregnancy not causing further deterioration as there is plenty research showing that for some women with CMT it's not all plain sailing.

ncbi.nlm.nih.gov/m/pubmed/8...

I know we won't take the risk and are going for pre- implantation genetic screening ivf and will use a surrogate. I guess these are the safest routes for me and the baby. Judging how I respond to progesterone, etc I do feel that the research so far, if even only using rats, is promising and interesting.

I guess we all experience this condition differently.

Take care.

[Shannah34]

Hi Happybeedaisy,

With regard to pregnancies: I was diagnosed with cmt when three months pregnant with my daughter (she's now nearly three) It is hard to say how tired I was as I only have my own experience and pregnancy is meant to be tiring! I was also working long hours and on my feet a lot as a retail manager. I never really felt I'd recovered my energy when I became pregnant with my son (now 9 months) and I've been utterly shattered since he arrived and was tired during pregnancy when I was working part time for myself as a designer-maker and looking after my daughter. Both my pregnancies were okay - I didn't suffer too much with any of the common pregnancy ailments, but had two c-sections as I didn't go into labour whatsoever with either of them. I've recently been to the GP and had blood tests to check no underlying (anaemia etc) conditions to why I'm so tired. All results came back fine and the general opinion is 'You're looking after a toddler and a baby and breastfeeding, you're bound to be tired'. Also breastfeeding creates progesterone, I've almost stopped now but having read the research you sent the link to may have to rethink contraception (currently mirena coil). So thanks for that, When I was expecting both my children I found it really hard to find any cmt related info, so please ask if you want to know anything else. X

[Happybeedaisy in reply to Shannah34]

Thanks S34. Mirena also releases progesterone into your system. I use a plain 'old' coil. Ouch to insert but less risky perhaps. I tried the Mirena coil at first but hands and feet were frozen and circulation became even more sluggish. Take care.

[avandyk in reply to Happybeedaisy]

Hello,

I was reading your reply. I have CMT IA. I had the Mirena placed about 10mo ago and had the same response. My neuralgia became unbearable and my hands were almost paralyzed. It was so painful to stand and walk that I quit working full time. I had the device removed two weeks ago and have begun to see a moderate improvement already. Did you recover most of your previous functioning?

[Happybeedaisy]

ncbi.nlm.nih.gov/m/pubmed/8...