Erectile dysfunction recovery

Allergies, blood and immune system
1

Hi, I am 33 and started fortnightly 1 pint venesections 6 months ago. My ferritin started at 800 and last reading is 153. Target is 50 I believe before moving to 3 monthly blood letting. 

While my main problem is general tiredness/fatigue, irritability, low energy, I started getting erectile problems in the last few years. The main problem is the erection is harder to attain and is not as firm as it should be. I also find that it is a struggle to ejaculate even during sex. 

I have been referred to an endocrinologist because my testosterone is around 9.6 just below the minimum and am awaiting results of an MRI of the pituitary gland last week. Other hormones are not right according to the doctor, but I don't understand the details. Prior to this, my doctor gave me testosterone gel, which I tried for 5 days and found my erection and ejaculation problem was resolved - erection was very firm and ejaculated 4 times in the one day, whereas I would sometimes struggle to even ejaculate once per day normally. So testosterone replacement can help me but I do not want to go down this route, I want my body to produce testosterone itself. 

Unfortunately my girlfriend dumped me before I started the treatment, my erection/sex problems were too much for her and she cited this as the main reason for leaving. This was devastating for me and has been an ongoing theme in all relationships I have attempted, even one night stands etc. my erection is too soft and I am not reaching ejaculation timely enough. 

What I want to know is whether my erectile and ejaculation problems will resolve themselves in time once I have reached the maintenance level of ferritin? I read totally conflicting info online, some say the pituitary gland does repair itself once iron is depleted, some say a year later, some say the damage is irreversible. What has your experience been? Has anyone else also experienced low testosterone and erectile dysfunction relating to HH? 

2

Ah, the $64 Billion dollar question - one that everyone wants to avoid.  Well, males anyway, females are much more open about such problems.  I applaud you for bringing it way out into the open and I hope some guys will let you know of their experience.

This puts paid to many drs who say no damage is done with a ferritin less than 1k.  HH affects everyone differently and if it has made a direct path to the pituitary gland (via the hypothalamus which has no blood brain barrier) instead of to the liver or pancreas then that is what happens.

I sort of hope that there is an anomoly (i.e. a microadenoma) in the pit gland because this can be fixed with medication to reduce the tumour.  Years after HH diagnosis, I was found to have a microadenoma on my pit gland which wiped out the effectiveness of my oestrogen putting me into extreme menopause.  Medication has fixed this.

My husband who is homozygous H63D was eventually found to have very low testosterone, but this was after he was treated for Hodgkins Lymphoma, so what caused what is not clear.  Testosterone is necessary to prevent a lot of health issues (muscle and bone loss, gynocomastia, memory loss/confusion leading to Alzheimers, infertility, etc).  It is a very serious problem.  My husband now has an injection every 3 months.  However, he was 20 something years older than you when this was realised.

My son who was diagnosed at age 22 with a ferritin level of 772 is struggling too, although there has been no mention of such a problem.  Despite being venesected to reduce his levels managed by a very good haemotologist, maybe this is happening to him too but he has got to the stage where he no longer wants to communicate with anyone, and it is very worrying.  Of course, he could not miss out when both his parents have HH.

If no fixable problem is found, and you have to stick to testosterone replacement, be glad that it exists because it is better than nothing.  It is the same as females taking hormone replacement, and some have to do it at a young age as well.  From my husband's experience, he did not much like the daily gel, and is much happier with the 3 monthly injection.  If you are stuck with it long term, try to get the injections.

Also have your Vit D and Vit B12 checked.  If low, get Vit D3 oral drops, and Vit B12 via injection as these work much better.  They make a huge difference as well, if you have a proper level of these.  (Husband's experience!).

So heaps for luck for you, and I hope some guys come in on this.

 

3

Hi Sheryl, thanks for your response. Since then I got the result of the MRI, which came back as "normal" and I haven't heard anything more from endocrinology. I also had testosterone checked one month ago and got the following results. Am also now in the maintenance zone, with last reading of serum ferritin at 36 (three weeks ago).

Serum Testosterone 14.7

B12 307 

Serum Folate 20.0

The doctor said that the surgery doesn't cover Vitamin D any longer, however I was found to have low Vit D levels a few years ago and prescribed Vit D supplements by the same GP.

If you have any advice on the above results I would be very grateful indeed.

I intend to get the testosterone level checked again in the near future if my GP will authorise it. I think there may have been perhaps a slight improvement on the erectile dysfunction but I haven't had a partner so it is difficult to say. I still feel quite light headed when I stand up too quickly, perhaps this is because my ferritin is so low. I had noticed this usually for a few days after each venesection but it now seems to be a permanent feature. Overall though I do feel significantly better than I did before starting the venesection earlier this year.

4

Congrats on reaching <50 ferritin!  How do you feel at 36 - do you think this is your optimal level (where you feel best)?

I am not sure about your serum T - it seems low to me when I look at normal levels being 280 - 940 (ng/dL).  What are the normal levels on your test results?  It depends on how they measure it.

Your Vit B12 seems to be in normal range (>200) and folate appears good also.  With regard to Vit D, get some oral drops anyway to see how you go.  Say 4 per day to begin with.  I assume you can still get Vit D tested, but you have to pay for it.

It is a crying shame that your partner left.  Women are sensitive about this too - they think it is a reflection on them, that they are not desirable enough.

A benefit of inability to ejaculate is that you can keep going longer, but no doubt it is start stop start again.  Some couples practice no orgasm for a month or two - it keeps the level of libido very high.

My endocrinologist has never said the pit gland problem will go away nor did he say it is reversible.  However, he is happy for me to continue to take carbergoline so far forever as, as soon as I try to reduce it, I feel the effects of lowered oestrogen.  So that kind of tells me, it might be irreversible.  It is now 7 years since diagnosis and treatment.  Sorry, does not sound promising but everyone is different.

In fact, I often feel I am sitting on a razor's edge, ready to tip over with my oestrogen.  I had 'reduced' my carbergoline from 2 a week to 1 every four days (not much of a reduction is it?).  Now, I am thinking I shall go back to 2 a week again to see if it makes a difference.  That is how delicate this hormone business it.

At your age, I can understand your desire to make your body produce enough T itself.  Have you investigated foods to eat and not eat?  How is your cholesterol?  We with HH tend to have low cholesterol.  I have been encouraged to increase mine (the good one anyway - HDL, I think - tend to get them mixed up).

Now, most importantly for you, cholesterol is the basis for hormones, it is the precursor to pregnenolone, then precursor to DHEA, which then converts to testosterone or oestrogen (what ever your body needs) - progesterone is in there too somewhere - I think it hives off to the side to do its job.  Cholesterol appears to be the precursor for Vit D too, so that explains why my Vit D was so low, because my good cholesterol was low.

If you are in the US, pregnenolone seems to be easily accessible.  It is not where I come from, but a sympathetic dr may prescribe it for me, and it might have to be purchased (along with script) from a compound chemist.  UK, I don't know - they seem to be problematic about hormones altogether there.  They seem to dole out crappy hormones and not the good hormones - to women anyway.

Google "cholesterol' and read the Wikipedia page.  You will get information there about appropriate foods to eat to improve good cholesterol which MAY improve your hormone levels.  I am hoping so for myself.  My last visit to my endocrinologist just the other week, he said he could not prescribe pregnenolone because it is not proven yet scientifically, but he would not be worried about someone else doing so.  So that sounds like he does not believe there is a problem with it, which is fantastic.

Also google 'pregnenolone' to get clued up on that too.

I would really like to hear how you go with the above information.

Hey, isn't there any guys out there that can help out - I know there are!  Perhaps you can PM norniron to keep it private.

To PM, click on the envelope under his name on the LH side.