Is there BH4 supplement/medicine?

[NotThisGuy]

So how are things going with BH4? any news?

@keenly and everyone who tried it.

 

[trsnorth]

BH4 supplement is in production again. It is called Pterin 4
http://www.spectrum-supplements.com/tetrahydrobiopterin-60-capsules.html

3 things can happen when you take it twice a day.

1. Nothing.
2. Makes you sick or more emotional.
3. You feel better.

I am the one who feels better. I don't have that incredible fatique pain. I can get off the couch. Hardly any anxiety. The problem is it is expensive and the overnight shipping on is is important. It must be cold. I notice it will loose its effect if it is warm all day.

 

[kyzcreig]

1) NootropicSource does not test their products:

2) Their BH4 is improperly stored at room temperature. So it will degrade in a matter of days, even if sealed air tight. I confirmed this by ordering a sample. It was shipped without any cold pack or insulation and makes zero mention of storage requirements. It had no effect compared to real BH4 from a reputable source.

 

[trsnorth]

Thanks for the warning.

 

[outdamnspot]

Is this worth trying if no other treatments have worked/helped, or are the effects unlikely to be significant (especially at the price)? I'm on 5g of Vit C, which I basically feel is keeping me alive (literally),and I know it's involved in BH4 production .. it's basically the only thing I can tolerate, but my qualify of life is awful.

 

[keenly]

So how are things going with BH4? any news?

@keenly and everyone who tried it.

I have a pack in freezer, not used, still in date if you are interested?

 

[trsnorth]

You can buy BH4 since it's back in production. You must have shipped over night.

Here is the link.
http://www.spectrum-supplements.com/tetrahydrobiopterin-60-capsules.html

 

[Lodgey89]

I have 2 copies of GCH1 and my report said people who supplement L Tyrosine feel better.

 

[Lulu71]

Hiya

I have 56 capsules of Ecological Formulas Pteridin (BH4) for sale for half the price I paid for them online only last week. I've listed them on ebay (UK) I wasn't able to tolerate them unfortunately (Severe MCAS). Search for them on there if you are interested. I have 100% positive feedback on ebay (1283 happy customers) and I'm happy to ship them out on ice. They were shipped to me on ice and have been kept in the fridge since then. Would be a shame for them to go to waste.

 

[knackers323]

You can buy BH4 since it's back in production. You must have shipped over night.

Here is the link.
http://www.spectrum-supplements.com/tetrahydrobiopterin-60-capsules.html

anyone brought from these guys? was the product still cold when received?

 

[trsnorth]

I do. You must have overnight shipping to receive it cold. I always order from them.

 

[keenly]

1) NootropicSource does not test their products:
View attachment 25328

2) Their BH4 is improperly stored at room temperature. So it will degrade in a matter of days, even if sealed air tight. I confirmed this by ordering a sample. It was shipped without any cold pack or insulation and makes zero mention of storage requirements. It had no effect compared to real BH4 from a reputable source.

Agreed/

 

[kallogann]

Damn i remember searching for BH4 supplement years ago when i started to being depressed because it was a logical point of failure, didn't even know it existed. It looks like godsend, but damn price and storage seems trickey.

 

[GimmeAdrenaline]

I'm homozygous for MTHFR 1298 and also have almost all BHMTs homozygous & both CBS heterozygous so I'm probably very deficient in BH4 since it's not created much and what is created is used up for detoxing ammonia.

Do you know if there is a BH4 supplement or a medicine or something that would contain BH4? Thanks![/QUOTE

I'm homozygous for MTHFR 1298 and also have almost all BHMTs homozygous & both CBS heterozygous so I'm probably very deficient in BH4 since it's not created much and what is created is used up for detoxing ammonia.

Do you know if there is a BH4 supplement or a medicine or something that would contain BH4? Thanks!

The company IRC.BIO sells it for decent price. They are shutting down November 2nd, but I think they still have some.

 

[Learner1]

Just thought I'd update this thread. A fellow patient gave me a couple 100mg packets of Kuvan, and they have proven to be a lifesaver!

He provided them with a test tube with a lid and a pipette, advising me to try 5-10mg a day. My brain felt exceptionally clear within 15 minutes and I was able to increase exercise intensity. Two months on it, the effect has not pooped out and I've increased overall activity level by 30% sustained. My days do vary and I have good days and bad days, but it's been great.

I think it helps in several ways. I have MTHFR A1298C and CBS 699T SNPs. I've had low serotonin, low dopamine, low epinepherine. And low acetylcholine. And I think I have chronically too little NO, but a tendency toward high peroxynitrites, for which I take high dose folate, B12, C, and other Bs. I think Kuvan helps all of this.

I looked into all methods of getting it - research chemical, pteridin, and Kuvan, from a specialty pharmacy. Kuvan is cheaper by the milligram, running about US$150 for a 90 day supply of about 900mg, about 10mg a day. The biggest issue I have had is with the pharmacy, who is upset about breaking the packet apart over several days. The only way they'll fill it is to take a packet every nth day. So, every nth day, one can dump the packet into a dropper bottle with 10ml water, then dropper out however much is needed per day, done sublingually.

Great stuff - hope others are using it. I've had no side effects.

 

[GlassCannonLife]

Anyone else tried this apart from @Learner1?

 

[drob31]

Just thought I'd update this thread. A fellow patient gave me a couple 100mg packets of Kuvan, and they have proven to be a lifesaver!

He provided them with a test tube with a lid and a pipette, advising me to try 5-10mg a day. My brain felt exceptionally clear within 15 minutes and I was able to increase exercise intensity. Two months on it, the effect has not pooped out and I've increased overall activity level by 30% sustained. My days do vary and I have good days and bad days, but it's been great.

I think it helps in several ways. I have MTHFR A1298C and CBS 699T SNPs. I've had low serotonin, low dopamine, low epinepherine. And low acetylcholine. And I think I have chronically too little NO, but a tendency toward high peroxynitrites, for which I take high dose folate, B12, C, and other Bs. I think Kuvan helps all of this.

I looked into all methods of getting it - research chemical, pteridin, and Kuvan, from a specialty pharmacy. Kuvan is cheaper by the milligram, running about US$150 for a 90 day supply of about 900mg, about 10mg a day. The biggest issue I have had is with the pharmacy, who is upset about breaking the packet apart over several days. The only way they'll fill it is to take a packet every nth day. So, every nth day, one can dump the packet into a dropper bottle with 10ml water, then dropper out however much is needed per day, done sublingually.

Great stuff - hope others are using it. I've had no side effects.

Any tricks for getting it? I've been trying to get kuvan for years.

 

[junkcrap50]

Anyone else tried this apart from @Learner1?

Yes. I have. I didn't notice anything, but I did not take it for a long period of time. Only about 2 months without interruption. It was hard to take consistently. I had to dissolve it in 10ml of water every 10 days, needing to use a scale to measure out 10ml. It had to be stored in the fridge, which was easy to forget to take as it wasn't stored with my normal pills. Higher doses might have made a difference, but that would have made it even more expensive.

Any tricks for getting it? I've been trying to get kuvan for years.

Now that it's generic, all you need is a doctor's prescription. Don't bother with insurance they'll never agree to it (althought Learner did get her's to approve it). And it's more affordable now that it's generic, I think $50/mo for 300mg/mo. It was $150/mo for 300mg/mo.

 

[GlassCannonLife]

Yes. I have. I didn't notice anything, but I did not take it for a long period of time. Only about 2 months without interruption. It was hard to take consistently. I had to dissolve it in 10ml of water every 10 days, needing to use a scale to measure out 10ml. It had to be stored in the fridge, which was easy to forget to take as it wasn't stored with my normal pills. Higher doses might have made a difference, but that would have made it even more expensive.

Now that it's generic, all you need is a doctor's prescription. Don't bother with insurance they'll never agree to it (althought Learner did get her's to approve it). And it's more affordable now that it's generic, I think $50/mo for 300mg/mo. It was $150/mo for 300mg/mo.

Very helpful, thank you!

 

[Learner1]

As an update, I have been on a 20mg dose. I was able to provide by insurance with amino acid results that showed high phenylalanine which convinced them I should get it. BioMarin also had a group who can help you get it approved.