Pyrrole treatment issues

The four main issues relating to pyrrole treatments 
by Sue Kira, Naturopath & Clinical Nutritionist

Over the past decade I have seen many clients who were who were previously prescribed high doses of nutrients for pyrrole by practitioners, including doctors, only to find their symptoms did not improve, and sometimes even deteriorated.

Admittedly, I’ve also seen many positive changes from this type of treatment, so it’s not necessarily incorrect. But what I have observed frequently are four factors:

 

1. The pyrrole reading was inaccurate, thus clients’ treatments were incompatible

 

2. Often the true cause of the elevated pyrrole reading wasn’t investigated

 

3. Insufficient monitoring of nutritional levels

 

4. Incorrect dosing

1. Inaccurate pyrrole reading 

I recently wrote an article Do you really have Pyrrole, or were your results distorted? where I present how certain metabolites in urine such as Urobilinogen can cause a false elevated result. It appears that some labs are not testing correctly or not adjusting the score to compensate for these extra metabolites.

Why is that important? Well if you had a score of say 45-60 ug/dL HPL and were told you had an elevated reading, your practitioner may decide that you have pyrrole disorder and need to be treated with B6, zinc etc.

But in reality, your score may have been falsely elevated by urobilinogen, which means you should be being treated for elevated urobilinogen, not pyrrole.

Elevated urobilinogen can be caused by various factors that I refer to in my article, including leaky gut, kidney or liver conditions.

However, a truly elevated level of HPL (pyrrole) can also be elevated by these conditions, hence point No 2…

 

2. What is the true cause of pyroluria?

What came first, the chicken or the egg? And what does that have to do with pyrrole?

You see, elevated pyrrole levels don’t suddenly arrive without a reason, even if symptoms onset rapidly as a result of acute stress or illness. There’s a cause – a reason – why someone develops pyrrole.

Without that cause, elevated pyrrole would not exist.

Some that say pyrrole is a disorder or a disease and that it is genetic. The truth is, while some genetically defective genes may contribute to elevated pyrrole levels, it’s really the result of some type of oxidative process in the body. In other words, something has created it and when you resolve the cause, it can be cleared from your body. There are no known gene SNPs directly linked to pyrrole.

SNPs also called ‘snips’ or technically, ‘single nucleotide polymorphisms’, are considered as defective genes, however new theories are emerging to suggest that SNPs are adapting to evolutionary changes which can be protective in other ways. For example, it has been shown statistically that those with schizophrenia have adapted to a lower risk of cancer.

Some of the potential genetic variants that can contribute to a genetic influence include genes such as MTHFR, COMT, CBS, GAD1, OXTR, CYP1A2 and more, but with all gene SNPs, there’s always an epigenetic factor involved.

In a broad sense, epigenetics is about our lifestyle and environment. Although we may have defective genes, they must be ‘switched on’ to be effective. If not switched on, they remain dormant. This means that chemicals, stress, poor food choices, alcohol, drugs and so on can break the homeostatic balance – the ‘straw that broke the camel’s back’ – that then ‘upsets the apple cart’ and creates elevated levels of toxic pyrrole in the body.

The reverse applies. A clean healthy lifestyle can turn off negative gene expression.

We all make a small amount of HPL (pyrrole) as part of normal metabolic processes related to haemoglobin synthesis (making blood), but we get an excess of this toxic substance floating around our body if it’s not cleared properly.

It used to be thought that the body would bind B6 and zinc to any excess pyrrole and by doing so, the excess pyrrole was eliminated from the body. This would be fine, until our bodies ran out of B6 and zinc, and then the pyrrole levels would rebuild. So it was thought that giving the body high doses of B6 and zinc would balance everything and ‘hey presto’, we’re back to normal. See more on this below in the talk about B6 and Brett from AAL.

Fortunately, we now understand that there’s a lot more to just taking B6, zinc and a few other bits and bobs.

Causes of elevated pyrrole levels (HPL) include leaky gut, dysbiosis, heavy metal toxicity and other various stressors on the body. I expand on how to address these causes in my article Pyroluria is not for life and can be treated and eliminated

If it is purely stress and nothing else that has caused the elevation of pyrrole, and this stress hasn’t made other things too dysfunctional, then pyrrole can be resolved quickly by dealing with the stress and re-establishing the lost nutrients.

It is rare to see this situation, but many years ago one of my clients who tested for pyrrole had this situation. He’d been wrongly accused of something and the police arrested him, and he was facing possible jail. Fortunately, the truth was established, and his massive stress was gone but left him feeling quite frazzled to say the least.

When I tested him for pyrrole, his score was in the hundreds. I treated him with a typical pyrrole nutrients protocol. As a result, his pyrrole levels returned to normal and he felt so much better within a couple of weeks.

These situations are rare because normally with elevated pyrrole levels, there’s a lot more going on than stress alone. Yet this shows that simply treating pyrrole with ‘Walsh protocol’ nutrients can be beneficial. But typically, there’s more going on that requires further investigation so that treatment is specific for an individual’s needs.

3. Nutritional levels not monitored

When nutritional levels are not monitored (measured), serious toxicity issues can occur.

Nutritional levels and other health biomarkers can be monitored with hair mineral and heavy metal analysis and/or tests using urine, blood, stool and saliva – depending on what needs to be checked.

It can be a good idea to test levels more than one way. For example, hair analysis of minerals and heavy metals is very useful to monitor the excretion of these elements, but at the same time checking the blood for mineral and vitamins levels is also important.

It’s particularly important to check copper, zinc (and the ratios), B6 and B12 with blood tests. Hair testing is best for checking calcium and magnesium. Saliva is best for hormones. Urine best to check pyrrole levels as well as neurotransmitters, amino acids and organic acids. Stool or faecal testing is best to check digestive markers, microbiome status, parasites and leaky gut, although you can also check some of these with urine and even breath testing.

The frequency of monitoring depends on the dosage levels of nutrients you are working with and if you have any adverse effects but can’t work out why. I suggest annually is, on average, a good time frame to retest nutrient levels and health parameters.

4. Incorrect dosing

Now we look at important nutrients related to pyrrole treatment to understand their benefits and the potential pitfalls of incorrect dosing.

Vitamin B6

We are told that when you have elevated HPL (Pyrrole) then you need to take B6. B6 is an awesome vitamin and in its two different forms can be extremely useful to support hormone balance, neurotransmitter balance and help the digestive system function better.

The forms of B6 are Pyridoxine Hydrochloride and Pyridoxyl 5 Phosphate (P5P). Pyridoxine hydrochloride has more longevity in the body. Whereas P5P is the more active form, which means it is made into a more useable form for the body. For those who don’t absorb Pyridoxine Hydrochloride well (which applies to many, particularly those with elevated pyrrole levels) P5P is the better option. However, some people respond better to a combination of both.

B6 in either form is the most overprescribed nutrient for pyrrole disorder.

Why? Because many have not been tested for B6 levels prior and even if their level is high, they are told that they are not absorbing the B6, so take more. If you are not absorbing B6, then the P5P form is generally a better option for you, but the question is, “Do you really need B6?”

More importantly than how much, or the type of B6, is the fallacy we are told that pyrrole binds to B6 making us deficient because most of it is eliminated in our urine and flushed down the toilet along with pyrrole.

In Brett Lambert’s article citing the latest research he has done in his pyrrole testing lab (AAL), he debunked the myth that pyrrole binds to B6. Treatment for pyrrole can include B6, but not because it has been bound and lost via urinary excretion. It was previously recommended to stop taking B6 prior to taking a pyrrole test. Brett has proven that taking or not taking B6 prior to testing makes no difference to the levels.

The main point is to always check levels of B6 before taking any, as you may not need it.

But really, the more important nutrients are zinc and magnesium, with other nutrients as needed by the individual.

Vitamin B6 toxicity
In February 2019 I asked my Pyrrole Australia Facebook Group with more than 7,500 followers if anyone had any issues with vitamin B6 toxicity or side effects.

Some commented that their wellbeing depended on taking their supplements, including B6. While the majority commented about side effects of increased anxiety and agitation (which also happened to me). Some people had serious toxicity symptoms such as peripheral neuropathy (tingling and numbness of fingers and toes, and sometimes lips).

Most vitamins and minerals are water soluble, including B6, and any excess is normally flushed down the toilet. But some nutrients, including B6 can build up to toxic levels. Other nutrients such as zinc, if taken for too long or in very high doses, can unbalance copper levels and cause issues with hormones, connective tissue and the immune system.

Don’t get me wrong, sometimes very high doses are needed to resolve a health imbalance. The main point is that nutrient levels need to be monitored so you are on the right treatment regime to suit your specific health situation.

Another issue to consider, which I discovered with some of my new clients who were having problems, is that they had been taking a B6 supplement, which on face value should not have affected their well-being. But other supplements they were taking also contained B6 which they were unaware of, which meant the accumulative level of B6 was too high, leading to B6 toxicity.

Dreams and cycling/pulsing of B6
While B6 levels need to be monitored, you can feel if you need more, or need a break for a while. Sometimes ‘pulsing’ B6 is beneficial. ‘Pulsing’ or ‘cycling’ is where supplements are taken for a period, then stopped for a while, then taken again.

For me and many of my clients, B6 cannot be tolerated for long periods of time without toxicity symptoms occurring, or at the very least, an overload that the body cannot process, so it needs a short break to catch up.

An indication you need more B6 is the absence of dream recall. I don’t mean remembering the details of a dream. Waking and thinking, ‘I’ve had a dream, can’t remember it, but I know I’ve had one’ is enough to say you recall a dream state.

Restorative, healing sleep occurs in stage three and stage four (REM) sleep. But dreaming happens in stage four REM (rapid eye movement) sleep. It is possible to get to stage three and not get to stage four, where dreaming occurs. But it is definitely better for our emotional, hormonal and physical wellbeing if we do get to stage four deep sleep and dream.

Without sufficient B6, we simply won’t have this level of restorative sleep and our neurotransmitter and hormonal balance will pay for it, and consequently we suffer from it.

If I take B6 (and I only take 25mg) for more than three days in a row, I start to have weird crazy often violent dreams, even if I haven’t watched anything nasty on the TV before going to bed. And I can also feel ‘racier’ and more agitated in general.

Many of my clients have reported the same happens to them, so I suggest to stop taking B6 until the dreams or raciness settles, and then take their supplements for two days and have 1-2 days off again. This seems to work a charm…and it certainly does for me.

It’s quite apparent that there’s a level of B6 that the body can assimilate and then clear, and an overload causes a ‘back up’ in the liver and liver distress, So a break by ‘pulsing’ can work well and then the B6 seems to be even more effective.

This is more important for those who are particularly sensitive to B6 (and other nutrients like zinc) and can only take small doses. However, I do have many clients who can only function with 200mg of B6 (as a combination of both types) daily but they still find it beneficial to have one or two days off per week – like having the weekend off.

I like to have the weekend off all supplements, or at least Sundays, unless I have a higher need, like when fighting an infection. This ‘trick’ has helped lots of my clients, so hopefully it will help you if you feel that your body feels overwhelmed with supplements at times.

Please note, this does not apply to prescribed medications, but if you feel overloaded with any medications, then talk to your doctor and get your liver enzymes checked.

It’s all about listening to your body.

When should you take B6?
This varies from person to person. Some find B6 at night helps them to sleep, whereas most find B6 is better in the morning as it can be stimulating and help to give you more energy throughout the day.

Some find that taking anything in the morning makes them feel sick. Eating a breakfast or lunch with plenty of protein seems to help – even a few nuts can be beneficial.

It’s very common for those with pyrrole to not feel like breakfast, in fact they commonly feel nauseous in the mornings, and for them, taking nutrient pills at lunch serves them better. Some of my clients who decided to eat breakfast even though they feel nausea, say that the nausea clears quicker for them by doing so.

It can be a bit like pregnancy morning sickness, whereby the liver is not coping well with the extra surge of hormones, but eating (if possible) foods that slow the liver such as fats, proteins, salty foods and starches can help morning sickness symptoms abate.

In both of my pregnancies I had morning sickness. With my first child, my son, nothing worked, but with my daughter it was much less. I found that if I had toast with vegemite (that I don’t normally like) before I got out of bed (courtesy of hubby) then my morning sickness wasn’t too bad. If it came back, munching on a few potato chips worked a charm. Note, the rest of the time I ate healthy food, but these tricks helped settle the nausea.

I’m not saying to do this, but it shows how certain foods slow down the liver’s detoxification process and this can be a good quick fix. But it also shows there’s something going on that needs addressing. Interestingly, vegemite is rich in B vitamins (and full of salt).

Zinc and Copper

We are told that zinc is needed for pyrrole because many with pyrrole have low zinc and an excess of copper. This is very true for many with pyrrole disorder, but only if you have been tested to confirm this status.

More of a problem is the balance or ratio between the copper and zinc, but some practitioners are simply looking at the reference range. All within range, then all good…but is it? Often not.

I love zinc and find it such a useful mineral. Along with magnesium, zinc is so helpful for all sorts of conditions from healing the gut, supporting our immune systems and balancing our neurotransmitters, plus it’s an awesome antioxidant. The biggest problems I have seen with zinc is ‘copper dumping’, and levels apparently not responding to consumption.

The type of zinc is also important. This can vary from person to person, but some of the favourite types include zinc picolinate, zinc citrate, zinc glycinate and there’s also zinc carnosine.

How do you know the best form of zinc to take for pyrrole?
Some find one type may make them feel sick while others don’t. But I must mention here that if you feel sick or nauseous with zinc it is sometimes because you need to take it with a meal containing protein.

Some find that their levels respond better with one type over another. Zinc Picolinate is said to be the preferred type for pyrrole disorder because it is considered gentler and allows better absorption. I use zinc pic a lot, but I also love zinc carnosine for gut healing support.

When to take zinc
Zinc is best absorbed if taken at night, but it’s hard to take high doses in one go, so it may be better to spread it across the day. Talk to your practitioner about what minerals and vitamins can be safely taken together as some compete with each other for absorption. There are too many variables to list here.

What is Copper Dumping?
The term copper dumping came from the side effects often seen when people first start a zinc treatment, but often this is because the zinc dosage is too high (at least initially), or the type of zinc doesn’t suit that person.

What are the signs and symptoms of copper dumping?
In most cases it is actually an exacerbation of the very symptoms you are trying to get rid of.

Symptoms may include an increase in depression, anxiety, mood swings, rage, impulsiveness and sometimes complete mania or psychosis if allowed to become unchecked. In children we see a worsening of behavioural issues.

Why do we get copper dumping?
To get copper dumping you first must have elevated copper in relationship to the amount of zinc.

But if copper is safely bound to caeruloplasmin it is less of a problem. For more information see my article on Copper, Zinc and Caeruloplasmin.

The other reason for the dumping is because the dose of zinc is too high for you, so the first thing to do is stop taking it, have a break until things settle, then start again at a super low dose and build very slowly, monitoring your symptoms as you go.

On a physiological level the reason we get this surge in our symptoms is because high copper levels can alter the neurotransmitters in the brain (in a bad way). The reason this happens is because zinc, being a copper antagonist, pushes out the excess copper. This is like we are dumping heaps of extra copper into the body, but in reality, the copper has been released from our somewhat safe storage sites within the body.

How to avoid copper dumping
If you are sensitive, the dose of zinc needs to start around 10mg and slowly build up to your prescribed level, which could be as high as 100mg spread throughout the day.

The level of milligrams of zinc referred to here is the ‘elemental’ value. When a mineral is bound to an amino acid (protein fraction), part of what we see in mg’s is the amino, and part is the mineral. For example, sometimes we see on a bottle:

125mg of zinc amino acid chelate (zinc glycinate), equivalent to elemental zinc 25mg’

In this case the dose has 25mg of zinc, the rest is the glycine, which by the way is a calming amino, which can also be a good choice.

If a bottle just says 25mg then most likely it is just that. Products bought from America usually just say the amount of zinc, whereas in Australia, products from a manufacturer always shows the bound amount as well as the elemental amount (which is the one to take notice of).

However, with nutrients compounded by a pharmacist, sometimes they only show the bound amount, but the prescription from your practitioner should show the elemental quantity.

Generally, most minerals, but not vitamins, are bound in this way to an amino, so we get better absorption via the intestines. The body recognises aminos easily but may refuse entry (from gut to blood stream) of a straight mineral.

Are compounded nutrients the best way to go?

Many people are prescribed a compound (mixed blend of nutrients made up by a compounding chemist) of their prescribed protocol of nutrients. This is very handy and can sometimes be cost effective.

I say sometimes, because often three months of a prescription is made up in one go by the pharmacist, which is cheaper than lots of small batches. BUT the big problem occurs if there’s one or more ingredient that either doesn’t suit the individual, or the dosage of one or more ingredient isn’t quite right.

With compounding, it usually requires several capsules to get all the nutrients needed for one dose, and then split into morning and evening doses, so overall you are still taking quite a lot of capsules.

I initially encourage my clients to take their nutrients individually at small doses of each and incrementally build to a level that suits them.

The slow build allows the body to adjust to physiological changes such as detoxification and hormone pathways. Dosing this way allows for a more controlled environment you can adjust as needed.

At premenstrual times, women need a little more B6 and magnesium, and kids need more zinc when sick to support their immune system (which means some zinc is utilised for behaviour and some zinc to fight infections).

After a while, if you find you have regular set doses of nutrients to support your body, then that’s a good time to consider compounding. Compounding of certain ingredients can be helpful at times where certain nutrients are otherwise not available over the counter, such as melatonin (sleep) and DHEA (adrenal) where that extra support is needed.

Following are two case studies which provide further insight into the issues presented in this article. Both names have been changed. The point of sharing these client’s stories is to point out that simply addressing an elevated pyrrole reading with nutrients may not resolve symptoms and that further investigation is often necessary.

Case Study 1

Bruce came to me after being treated with the ‘Walsh Protocol’ by his integrative doctor for the previous 12 months. He had a set plan of certain nutrients compounded for him to take in the morning and evening along with a few extras for his ‘Under Methylation status’ such as SAMe, Methionine and TMG.

His symptoms included anxiety, depression, insomnia, heartburn and reflux, loose stools and poor ability to concentrate. After 12 months on high doses of B6 as both Pyridoxine hydrochloride and Pyridoxyl 5 phosphate, along with zinc pic, vitamin C, biotin, theanine and magnesium, there were no symptomatic improvements.

His digestive symptoms were worse, his anxiety had increased with more constant feelings of agitation and the addition of occasional panic attacks, his toes felt numb and his arms ached with a ‘weird feeling’. He was told to just continue with his prescription, because these things ‘take time’.

By the way his pyrrole reading was 30. In the new reference ranges, this is not considered to be elevated.

You may have twigged to the main issue here. Not only was he over prescribed and was now suffering the effects of B6 toxicity (yet told to continue) but the cause of his symptoms was not even looked at.

In this case to discover the cause of his severe gut problems (dysbiosis) I ran some tests which revealed he had a parasitic infestation. No quantity of vitamins and minerals will deal with that, ever.

I was then able to treat his dysbiosis and within three months all his symptoms had cleared. And this was without any B6 (because his levels needed to drop) but he continued with some of the other nutrients like zinc, magnesium and vitamin C.

Case Study 2

Sarah’s HPL (Pyrrole) score was 350, so clearly there was something really going on for her pyrrole wise. Symptoms included extreme fatigue, constipation, bloating, weight gain, anxiety, dry eyes, insomnia sometimes but she could sleep 20 out of 24hrs if allowed to. To top this off she had been unsuccessfully trying to fall pregnant for the previous three years.

When preparing for conception, three years earlier, she visited a naturopath and her doctor to try to remedy her fatigue and was tested for pyrrole disorder. Because her score was extreme, she was placed on very high levels of B6 and zinc along with magnesium, vitamin C and some other supplements. She was tested for thyroid which did show underactive and she also had high levels of antibodies present.

Sarah was placed onto thyroid medication along with her nutrients and after several months her energy, weight and sleep improved, but her anxiety and digestive system was still bad.

The digestive distress was put down to her anxiety and her anxiety was put down to her thyroid, and thus needed antidepressants she was told. Really???

Anyway, she was still not conceiving and found me in an online search. After a thorough consultation and some extra tests, we found she had a double mutation (homozygous) for the MTHFR gene, and her thyroid antibodies were elevated even though her other thyroid parameters were normal.

This was because her immune system had never been treated, only the thyroid hormones. Consequently, this created severe oxidation, making her pyrrole score elevated and her bloating and constipation added to the picture.

In many cases, people with elevated levels of pyrrole are also deemed to be an under-methylator or an over-methylator (see my article Understanding Methylation).

Sarah had been diagnosed as an under-methylator due to some of her symptoms and some ambiguous blood tests. I say ambiguous because often these markers are not so clear cut or accurate, so the practitioner often decides from symptoms, which can work – sometimes.

The problem with being an under-methylator is that they are often told to avoid things like B12, folate and B3. But I realised these were the very things Sarah needed to help her anxiety, which we organised and in turn settled her gut (flight and flight switch).

This also helped her to successfully fall pregnant and have two children (one at a time). Folate in the active form is super needed (sometimes in high doses) for those with MTHFR to have a successful pregnancy and healthy child free of things like ADD, ADHD, Autism, Neural tube defects etc.

In fact, Sarah was neither an under nor over methylator but simply needed her MTHFR enzyme pathway to work properly. The B6, zinc, Vit C, magnesium etc all helped considerably but without the addition of Folate as 5MTHF, methylcobalamin B12, and in her case vitamin D for her immune system, along with a special auto-immune diet, Sarah was on a pathway to having no children.

Now she has restored health and two very healthy children.

Are you being treated properly for pyrrole symptoms?

If the answer is YES and you feel good, then great, keep doing what you are doing.

If the answer is NO, because your symptoms haven’t improved enough or at all, or even worse, perhaps you need more time, which is sometimes the case. But if you have been following your program for some months or years with no or little resolve, then now is the time to look at what may be missing.

Here are some questions to consider that may help you to decide the next move regarding your health.

  • Do you really have pyrrole disorder? Retest your score with AAL (only available in Australia). Is it above 40, adjusted for urine metabolites?
  • Do you have any underlying causes of your elevated levels, such as leaky gut, heavy metal toxicity, chemical exposure and the like?
  • Have you had your nutrient levels checked? Had your neurotransmitter levels, amino acids or organic acid levels checked?
  • Is your diet suitable for healing or are you consuming toxins to encourage leaky gut such as gluten, processed foods, dairy products, sugar, alcohol, nicotine, or using toxic personal care products?
  • Are you adding to the copper load by being on the contraceptive pill or other Hormone Replacement Therapies, or on any medications that can increase your copper levels? Or do you have a copper rich diet of coffee, chocolate, avocadoes and soy products? There are others but these are the main ones.
  • How are your stress levels? Stress via your adrenal glands reduces your caeruloplasmin, which is the protein that binds copper safely so it doesn’t do as much harm. Consider ways to reduce stress, which can also include magnesium to help your body cope better with stress.
  • How is your liver? Your liver has to process all kinds of toxins, help with the conversion of hormones, neurotransmitters and the vitamins and minerals you take to treat your symptoms. Too many supplements can be detrimental for your liver and build to excess, especially if the liver is under strain. Do you drink alcohol or lots of coffee?
My suggestion: Don’t leave any stone unturned to find the source of your imbalances and ensure you get the treatment that’s right for you.

Any questions?

I’m available for consultations via skype, phone or in-clinic at Mooloolaba on the Sunshine Coast. 

 

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