New UK member, hoping I will get better

Member Stories
#61

Completely agree - hence why I contribute to this forum (both with my bitching and moaning) and also financially.

However, take me for example - I have the VDR homogenous mutation, say my viitamin D levels were super low, and as a result when Fin hit my body, it was in a unique position to destroy my brain. However, maybe someone else had a MTHFR mutation and it impacted a different area of the body. I guess what I’m saying is what if the trigger was the same for all of us, but the damage is different. Still not a reason to divide, but a sad truth we may face. I’m excited to see the results of the 23nMe project, especially when mapped against the symptom survey.

#62

I get you and I’m sorry if it seemed like I was being critical. It’s been a long day and I think I jumped ahead with something when maybe I should have read it a few times.

We are a small group and need to accentuate the similarities, not the differences, which happily it seems that everyone is prepared to do.

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#63

Hey Mcbbould,
I still need to reply to you and a few others through PM, I’ll try get to that tomorrow if I can.

I just wanted to quickly say I also have a mix between symthoms that vary greatly, I’m always very dizzy or disoriented.
The derealization was extremely bad initially but I’ve adapted somewhat but i still feel like I’m looking at the world through a lens, things feel slightly more real to me now but still i feel a bit spaced out so your not alone in that regard. I get tremors or twitches through my hands too and headaches when I try use my brain to do anything slightly demanding whether it be learning a new game, trying to remember information or just doing certain tasks, takes it out of me. I also can’t really multitask well anymore, i can only focus specifically on one thing and have to concentrate very hard.
I’m very much physical and mental issues so there can be a big intersection between issues.

I’d have no doubt your issues are caused by the same thing, I’ve spoken to more finasteride users with my eyesight issues than accutaners and even in regards to skin, more finasteride users than accutane that I’ve spoken to so far, same symthoms as me even though i never took finasteride. All mess with androgens, only common denominator and most likely thing possible so far, they definitely have to be effecting the same thing :blush:

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#64

Yeah I think it’s hormonal/neurosteriod related to some degree (at least the initial shock). It’s not just us, there are thousands of people online who suffer from similar side effects who haven’t taken any of the drugs we mention. Yes, even people with severe anexity, people who abused MDMA/illegal drugs, women who are pregnant, women who take birth control, menapusal women, etc. I was even in contact with a lady who had almost identical sides as I do (more so than anyone on this forum) who thinks she got it from a bad bout of antibiotics. So I’m not saying there isn’t some universal cause/remedy for our issues, but it worries me to find such a diverse set of symptoms coming from seemingly endless triggers. At least we know in our case what triggered our issues. Some folks don’t.

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#65

Yeah i understand what you mean, there is a diverse set of symthoms among different people but if they are caused by similar mechanism, a fix for one would surely benefit us all, if the cause for visual snow is found, that’ll surely help us too in regards to vision and if a cure for PFS is found, hey maybe it’ll help people with VS too. If they are all unrelated there’s only so much things that can cause such a large amount of symthoms, so it’s just finding out what they are and with gene therapy and mapping getting more and more advanced, surely it won’t be too long before not just us,but many diseases, gene expression changes etc are cured, it’d be very useful because if pharmaceutical companies could tailor thier drugs to each person cheaply and negate side effects, you won’t have any complaints i guess, so could be something they might look into eventually who knows.

As with all business, competition is good, if someone creates something new in the industry that massively reduces pricing and greatly increases a cure rate for stuff, other companies will have to adapt or be left behind, you can’t be on top forever.

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#66

So had the NHS andrologist today. Kind weird at first since it was a female doctor, just feels a little strange discussing erection problems with a woman!

I wasn’t in very long, it was clear that she was busy. I told her the full story - took finasteride for a few months and then my erections dropped off a cliff. There has been some improvement. She said to come back in few months and if its still not back to normal we can do some tests. I said fine.

I wonder if I should have pushed a little harder and got the tests today or talk more about some my concerns. Whether she had heard of PFS, what are my chances life of recovery, etc. In the end, I am just so sick of doctors that I was kind of pleased to just get out of there in the end. Hope I’ve done the right things really.

With regards to the erection, I am still having this love affair with high dose vitamin D. Had a weekend of reasonably good erections (well, reasonably good in light of the fact I am suffering from PFS! Not back to normal!). I tested today and they are dropping off again. Interesting, this is a week since i have taken my vitamin D pill (they are weekly) so it is still looking like vitamin D is a big part of my recovery in terms of erections. This is so strange if its true. I know others on this forum have tried vitamin D and not noticed much change. I’m gonna take another pill tonight and will let you know how the week goes in terms of erections.

My big concern is this effect will just tail off as so many other treatments that people try on here fine. If there is one recurring theme I have found it is that people tend to find something which works for a few weeks, they get really excited about it … and then after a month or so they are back to square one. That would be a big disappointment if this is the case with vitamin D.

The only reason I can think it might be help is because it is a neurosteroid and we know finasteide screws around with the delicate neurosteroid balance of the body. Perhps the high dose vitamin D is give this system a boost? Perhaps even correcting some kind of imbalance? Who knows!

There are a few small studies which say Vitamin D is good for erections too, seems to increase testosterone moderately so it could just be to do with this as well. It is also equally plausible that this is all placebo effect or just the fluctuating improvements as time passes and the longer I stay off finasteride.

So things are aren’t awful at the moment. I think if I can keep up the erections with the vitamin D it will be a success. That being said - still no spontaneous or nocturnal erections. Ejaculate is clear so still clearly things are far from normal.

Four months off today, lets hope the next four months are better than the last four! Will keep you all updated.

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#67

Hey Will,

That sounds like you’ve had some positive things happen, I’m really pleased for you.

Could you share a link to the vitamin D that you’re taking?

#68

How much vitamin D do you take ? :slight_smile:

#69

I wouldn’t beat yourself up about. What I tend to do before seeing a doctor is to write everything down that I would want to ask. I usually remember to ask them but always say if they don’t mind whilst I have a look at my notes to check that I’ve got everything covered. You raise some good points there. I appreciate that what I am saying is pretty basic stuff but at the same time it’s always proved useful to have that check. The main thing is that you are being seen and your concerns looked into. You can discuss further at your next appointment. I feel that just knowing that you will be seeing someone helps. One other thing re: appointments is you could also record the appointment on your phone and have it in your pocket. Sometimes it is hard to take everything in and this will ensure that you have a record of what the doctor said. I’m pleased also that you have seen an upturn with your vitamin d supplementation. All the best.

#70

What exactly is a high dose of vit d ?

#71

Thanks Greek! Yeah, its a weird thing about the vitamin D. Its a weird thing generally whats going on with my erections!

So this is a picture of the product that my GP prescribed me: https://www.ebay.co.uk/itm/HuxD3-Colecalciferol-20000iu-Vitamin-Hux-D3-Capsules-Vegetarian-Kosher-Halal-/152474665605?var=

I think my D levels were something like 22 and anything less than 30 is considered low. Supplementation is still recommended for people with 30 - 50 and ideally 75 is optimal. So my levels were pretty low really.

It looks like most vitamin Ds that you get in boots etc are around 1000iu so the product I was prescribed is like 20x stronger. Bear in mind though, I was told to take one tablet a weak but I have noticed that my erections don’t last that long. After 4-5 days, I can feel them starting to weaken again and I need another tablet soon.

Hope this is helpful Rmoney96 :slight_smile:

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#72

That’s interesting Will, thanks for sharing.

I wonder if you could get your vitamin D tested daily for a week or at least on the day at which your condition deteriorates? If the vitamin D is the fix for you at the moment, you should be able to see the vitamin d level correlate directly with your condition.

Warning: half baked theory coming.

As vitamin D can be stored by the body, I wonder if you have exhausted it all by 5 and that would mean you could do with taking it on a 5 day cycle rather than 7? Maybe mention it to the doc.

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#73

Interestingly, I was doing some reading last night and vitamin D does have some effect on nitric oxide. I notice that the PDE5 inhibitors also largely have their effect through blocking the break down of nitric oxide. I would describe the feeling I get after taking vitamin D as if I have taken a tadalafil. It feels like there is more blood to rush into the penis. I still struggle to maintain the erection and it needs a lot of stimulation bit I do feel there is more blood flow.

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#74

Hi Greek,

Very sensible mate - I do plan to get my levels tested again and I need to work out a more sustainable way of getting my vitamin D. I wonder if I would do better with a daily dose, but lower. Perhaps - 1000 to 2000iu a day. This should still be pretty safe I think but i’ll discuss it with the doctors. Will let you guys know when I get my levels rechecked.

I’ll just say again, I wouldn’t consider this a cure really for me - I still have problems especially with spontaneous erections and it takes a long time to get erect. But, it is better than not being on it. This might not be something which works for everyone, perhaps if you are low in vitamin D?

This could also all be in my mind! Lets see how the coming few weeks go really with the vitamin D and erections. I’ll keep everyone up to date.

How you doing Greek? You still getting better mate? Hoping you are close to fully recovered now mate :slight_smile:

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#75

Hey guys, I can second this too. Vitamin D is good for erections and testesterone. I haven’t been getting enough sun these past 3-4 months but last 3 days I made sure to go out in the sun (even though its cold as hell here) without a shirt on for 30 mins or so. It definetely improved my libido a bit and I had better sleep too… And this is just 3 days of sun for 30 mins…

#76

Thanks for your support Scotsman! Good advice about writing everything down, really sensible.

How are you doing these days? I remember you had a success post a while ago. Do you feel like you are still making improvements?

Hope your doing well buddy :slight_smile:

Will

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#77

Hi there Will. I’m doing not bad thanks :slightly_smiling_face:

After my celebratory post I went back and had another look at my dick, which resulted in a bit of a come down. It still measured the same but still didn’t look quite right. I think that I’ve had difficulty with blood flow to the whole of my penis, and although that has improved, there is still some tapering. I’m trying to hold on to that amazing feeling that I had however that I could get back what I had lost. I think that I was just overwhelmed by the fact that I didn’t have a dick under 5" like when I first became aware of the changes. I hope that all of us here can get that feeling when things revert to as they should be. Although I have revised my initial assessment of improvement, the main thing is that there is an improvement :+1:

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#78

So brief update guys. Not great news unfortunately.

So I took a high dose vitamin D on Tuesday night. Had a few good days of erections but by Friday/Saturday (when the vitamin seems to be running out) I am pretty much back to square one. I’ve been taking the vitamin pretty continuously over the past few weeks so just thought i was perhaps improving naturally and maybe i could even stop the vitamin one day. How wrong I have been. I realise now after the vitamin is leaving my system that it really does a lot and my erections without it are poor. In fact, it more just generally sexual dysfunction. My orgasm seems strange too, like I want to cum quickly but when its actually approach it sort of seems delayed at the last minute. And I can’t get a full erection. So I feel pretty gutted.

I tried taking a lower dose of the vitamin D, kind of wondering if a lower dose daily would help (as oppose to the weekly high dose), I don’t think it will really. I think there is something specifically about giving my body the high dose which gives it a ‘boost’ for several days and good erections.

The problem of course is I can’t stay on high dose Vitamin D! I’m gonna get a blood test to check my levels this week hopefully but if I stay on this dose it would probably be a few months before my levels are starting to get quite high. There is a risk of toxicity in high levels in the body so given I’ve already fucked myself with finasteride, I don’t want to screw my body up more with crazy levels of vitamin D.

So I feel kind of gutted guys. Back to square one. Where do we go from here? I really wish I had pushed harder now at my andrology appointment this week. I just thought I was improving this week and that is what I said. In light of this weekend. It is clear I still have big issues.

So I am now 4 months off finasteride and my erections are definitely still very weak. ejaculate clear, no sponaneous erecitons, etc. I really feel so scared and fucked now! What are the chances of improving after four months?!

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#79

Hi Will
So so sorry to hear this bad news mate i truly feel for you pal it’s a horrible situation to be in i still remember the early days of realization of the damage i had done taking Finasteride it’s totally mind blowing.
I had my fingers crossed for you mate last i heard things were looking up.
Don’t beat yourself up about not pushing harder at the hospital you will get another shot at your next visit this time you will be more mentally prepared.
I have my appointment coming soon I will push forward for help as much as possible we can compare notes share experiences and fingers crossed see a positive outcome to this.
You take care mate will pm you :+1:

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#80

Hi Baz,

Thanks so much mate for your kind message. You’ve been a big support to me on this site. Yeah, it is pretty rubbish. Going to see the GP this Wednesday to get a blood test for Vitamin D. See what my levels are like. If its still kind of low-moderate, I think I’ll carry on with the high dose treatment for a little longer but just monitor my levels closely. I am just wondering if I keep on with the treatment and keep the erections strongish, will that lead to some permanent positive changes in the penis? Like penile rehabilitation? Its possible - its also possible it won’t!

I do have the possibility to go back on viagra/cialis but I must admit I’m scared of the side effects. I know they are meant to be safe drugs generally but I did get some side effects and since I’ve developed tinnitus recently there is a chance the drugs could make it worse.

How are you doing mate? Definitely push hard when you go for your urology appointment and say its been a bloody nightmare for you! Get as much help and treatment that you can! Really pleased you have this treatment coming up mate :slight_smile:

Hows the other things? The Ank Spond still a problem or is that any better?

Will

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