I have been taking a high-dose vitamin B-complex for quite a while. Is it still possible to perform the HPU-urine test?
Dr. J. Kamsteeg: “The test result will not be reliable in this case, because a vitamin B-complex will also contain vitamin B6. The subsequent HPU-score will be lower than if you had not been taking this supplement. In order to get a reliable test result, you need to stop taking this supplement for several months prior to taking the HPU test. However, this is not recommended because your HPU-related symptoms will worsen considerably. One option is to take the HPU test anyway and, from the results of the test, an estimate of the original HPU score can be made. If you’ve been taking a daily dose of at least 100mg vitamin B6 for more than three months, your HPU score will always be lower than 0,4µmol/l if there is a good control of the HPU. When taking at least 75mg B6 for three months, the score will be approximately 0,5 µmol/l. When taking at least 50mg B6 for three months, the score will be approximately 0,25 µmol/l lower.
Another option is to get an indication of HPU by performing a porphyria-screening and/or further blood tests. It is also possible to test someone else in your immediate family. Your mother is the best option for this, otherwise test your daughter or sister. If you are male and your mother has a negative test result, the chance that you’ll have a positive HPU-score is very small since HPU rarely occurs in men.”
I have HPU, with many psychological complaints. I recently took Depyrrol Basis but my depression is gradually increasing. What should I do?
Dr. J. Kamsteeg: “Our advice is to take a much lower dose for psychological problems such as schizophrenia, depression, psychosis and severe psychological stress. For example, try taking one capsule every other day, or take one capsule of Depyrrol-Plus or Depyrrol Kind, because these preparations contain half the dose of the Depyrrol basis. In case of emerging depression or psychosis, treatment should be stopped immediately. In this case, please contact your attending physician, therapist or KEAC for further advice. In such cases, zinc is often continued and possibly manganese, and the administration of pyridoxal-5-phosphate is gradually built up through the use of regular vitamin B6. “
I am pregnant. Is it risky to continue to take Depyrrol?
Dr. J. Kamsteeg: “There are no safety guarantees with regard to Depyrrol. This is also the reason why we should discourage use during pregnancy. But we have no reason to say: ‘It is dangerous for the unborn foetus’. If you look at the ingredients pyridoxal-5-phosphate, zinc and manganese, there is no cause for concern. No warnings have ever been issued for these substances in relation to pregnancy. In addition, we know many patients who have continued treatment during pregnancy because, shortly after stopping, their symptoms began to return. Those who continue their treatment are probably less likely to develop pelvic complaints during pregnancy. But we advise to switch to a maximally dosed maternity multi, for example Prenatal Nutrient from Solgar. Then you know for sure that no problems will arise for the foetus.
I have an HPU-score of 1.0µmol/l and my sister has 1.3 µmol/l., yet I am the one with more symptoms. How is that possible?
Dr. Kamsteeg: “The HPU-score does not at have any correlation with the severity of complaints. The HPU excretion in your urine does not directly contribute to your symptoms. There is only an indirect relationship between your HPU value and your state of health, because your HPU-inclination changes biochemical processes in the body and certain compounds start to accumulate. That mechanism determines the severity and degree of symptoms in the long run. This is why someone with an HPU value 1.0 µmol/l sometimes experiences more problems than someone with an HPU value of 1.5 µmol/l. Because of the low soluability of HPL you will excrete less with low volumes in 24 hour”
My daughter started treatment much later than I did. It is already a lot better with her, while I hardly experience any progress.?
Dr. Kamsteeg: “In children, the therapy generally has a much faster effect than in adults. Children often make significant progress within six weeks, while adults usually need to wait many months. The treatment can also be reduced much more easilyin childeren and therefore do not have to continue taking it. In case of a relapse, Depyrrol can be used again for a finite period. There are also adults who can, after for example nine months, reduce the treatment or reduce the dose. But there are also women who cannot skip their dose for a single day without immediately experiencing a deterioration. Incidentally, not all children improve rapidly. Sometimes there is a blockage somewhere in their system that prevents a child from responding to the treatment. Consider, for example, HPU children with pituitary thyroid problems. When this problem is not addressed, Depyrrol does virtually nothing in these patients. The accumulation and fixation of certain substances in the tissue is of course far less advanced in children.”
I am HPU-positive, just like my two daughters. I recognise a lot of HPU-related symptoms in my very elderly mother. Does treatment still make sense in her case?
Dr. J. Kamsteeg: “That’s hard to say. The prognosis for elderly women is not very bright. In general, the later a positive HPU-value is measured, the harder it is to treat. As age progresses there are so many compounds stored in the tissues so that it is very hard to remove them with treatment. A person of 72 or 82 years old with a positive HPU-test, will probably have symptoms for the remainder of their life, even with treatment. This does not mean that treatment at this age does not make a difference. There are elderly people who have undergone treatment and who say: After treatment, I feel the same physically but felt great psychological changes. Someone even said: “I would not have wanted to die without having had this experience”.
One of my brothers has HPU but has always been much worse than his two 'HPU sisters', especially psychic. However, he has an HPU score of 1.4 μmol / l, for which according to the book Do you have HPU? one schould not expect psychiatric problems. Can you explain what's going on?
Dr. J. Kamsteeg: “One hardly sees high HPU scores in men. A test result of, for example, 1.8 μmol / l is very high for a man. Men who are HPU positive, however, have serious complaints. Especially serious psychological problems are often at the forefront. A condition like schizophrenia mainly occurs in men. An important number of these patients probably have pyrroluria; a link with HPU has not been established so far “.
As of what age is it possible to perform an HPU-test?
Dr. J. Kamsteeg: “It is already possible to carry out the HPU-test at any age, even in babies. However, the HPU-score is a “stress-induced” condition (a positive HPU-value develops after exposure to stress). It would not be necessary to test babies as usually they are found to be without stress. KEAC researched this in a group of young girls. They had a value of approximately 0.75µmol/l. However, three months after their first period, these values increased to 1.2 to 1.4. We now know that menstruation has a strong impact. My advice is to test a child if he or she exhibits HPU related symptoms. If the result is normal, then test again when the girl is 15 or 16 years old.”
I have HPU and suffer from overweight. Which diet offers a solution?
Dr. J. Kamsteeg: “The diets from Montignac and Dr. Atkins are the only ones that offer a solution for those with HPU. But you should not have too high expectations from the Montignac method. I always say: ‘If you lose almost one kilogram of weight every month, you will have lost more than ten kilos a year later’. Incidentally, successful HPU treatment can also contribute to weight loss. HPU patients who are less depressed than before are less likely to reach for sweets. Moreover, they will have more energy and therefore are more likely to exercise, with weight loss as a result. Patients who have experienced major emotional issues in the past, sometimes see their weight gradually increase when using Depyrrol. We believe part of this problem lies in the production of thyroid hormone peripherally in the cell. Research into this has now begun.
I suspect that I tolerate gluten badly. What is the use of the total gluten test of the KEAC?
Dr. Kamsteeg: “With hormonal changes, the production of antibodies of the IgA type decreases. This is the purpose of the total gluten test: it measures how much IgA is used up for the neutralization of gluten, since IgA is used to neutralize foreign proteins. If not, then there is no reason to eliminate this food. By eliminating the food, the consumption of IgA can be reduced. As a result, the production of IgA can be used for other purposes, such as neutralizing house dust, pollen or sperm. Not only a gluten-poor diet but also a condom can reduce the consumption of IgA and protect women with HPU from all kinds of allergic reactions”.
I am a medical specialist in gynaecology and I also have HPU. I my pratice it strikes me that more HPU-patients have nausea and vomitting in pregnancy, than others. Did you find this too? Is there a relationship between TSH- and/or the prenancy hormone hCG and NVP?
Dr. J. Kamsteeg: “Peak concentrations of hCG and the most rapid rate of rise correspond to the time of maximal NVP (nausea and vomiting in pregnancy) between 8-12 week gestation. Several authors have studied the hCG concentrations in women but the results are not consistent. Goodwin found that hCG was elevated in women with vomiting compared to gestational age-matched controls, but there was significant overlap. But there are women high in hCG who have no morning sickness at all. The consistent finding that NVP is more common with multiple gestation in which hCG is significantly elevated compared to singletons, also supports this observation. It has also been noted that mothers carrying foetuses with Down’s syndrome, a condition associated with elevated hCG, are more likely to have NVP. By way of contrast, women with trisomy 18, in which hCG is very low, report much less nausea in pregnancy.
The rise in hCG corresponds temporally to a consistent thyroid stimulation in the mother (Goodwin). Since hCG closely resembles its sister glycoprotein hormone, thyroid stimulating hormone (TSH), it has been stated that hCG is the thyroid stimulator of pregnancy. The observation is, that NVP correlates closely with the degree of biochemcial hyperthyroidism.
During early pregnancy, the high circulationg levels of hCG could be responsible for the transient thyroid stimulation leading to hyperemesis. The mechanism known as “specificity spillover” could explain the ability of hCG to stimulate the TSH-receptor. The specificity spillover is related to the structural homology between hCG and TSH molecules, and between their mutual receptors (Asteria, 1999). In patients who excrete pyrroles with the urine, pregnancy problems are often found. The TSH is suppressed and is seldom above 2.0 mIU/l before pregnancy, although the FT4 and FT3 are within normal range. TSH is decreased much more clearly in the first part of pregnancy when hCG rises. It seems as if hCG rises to higher levels as in other patient.”
I have a patient with HPU and she has spots without pigments all over her skin called vitiligo. Is their any connection with HPU?
Dr. J. Kamsteeg: “Almost all patients with vitiligo have raised antibodies against their own thyroid, especially against thyroid peroxidase (anti-TPO). Over 90% of these patients also have Hashimoto disease. 42% of HPU-patients have anti-TPO antibodies. Therefore , since many HPU patients also have Hashimoto, there is a connection between HPU and vitiligo. The risk of developing an auto-immune disease is much higher if one already has an auto-immune disease. The daily use of organic selenium compounds, such as methyl selenium cysteine 200 mcg, gradually reduces the number of antibodies over the years.”
I have HPU with thyroid problems (Hashimoto's disease). These problems started after the my last pregnancy months ago. I gained weight during pregnancy, was tired and felt depressed and was not able to loose some weight. After my pregnancy, my liver values were slightly increased, as was my TSH-value. Also my cholesterol level was increased. Do I have an increased risk forhart and vascular diseases?
Dr. J. Kamsteeg: “Hashimoto’s disease, in which antibodies are raised against your thyroid, most often thyroid peroxidase, very often starts between one and three month’s after delivery. This disease, which is marked by thyroid hypofunction, actually begins with a period of thyroid hyperfunction. In a later phase, periods with hypofunction can alternate with periods of normal or hyperfunction. At the beginning of the period of hypofunction, the liver values GGT, ASAT and ALAT are increased. The increased liver values can be increased due to inflammation of the gall ducts (for PBC look for antibodies against cell mitochondria; AMA) or liver. In this case, cholesterol is increased and the relationship between LDL- and HDL-cholesterol is important. In the case, of LDL-cholesterol increase, treatment is necessary. When both LDL- and HDL-cholesterol are increased, treatment is less important. The daily use of organic selenium compunds, such as methyl selenium cysteine 200mcg, gradually reduces the number of antibodies over the years.
Why do men rarely have a positive score on an HPU-test?
Dr. J. Kamsteeg: “It is estimated that less than one percent of all men have a positive score on an HPU-test while in at least one in ten women a positive value can be expected. The reason for this is not yet known. One hypothesis is that male embryos with a HPU-inclination usually result in early or late miscarriages. This may also explain why women with a positive HPU-score often have more sisters than brothers and more daughters than sons. This phenomenon could possibly have something to do with a greater need for zinc in male embryos. Another hypothesis is that the egg cells of ‘HPU-women’ manage to repel sperm cells with a Y-chromosome. In the case of a family in which the DNA of the sperm cell was injected directly into the egg cell of the woman, this resulted in four sons with a positive HPU score.