Pyroluria and Hypothyroid. Is there a link?

[suzannai]

This is my second post today, so apologies but I am trying to sort this thing out.

I am symptomatically hypothyroid, normal labs (before meds) and am on T3.

For me all of this started after a stressful period. I am wondering if anyone has heard of KPU or pyroluria? If not here is a link: naturalinsight.hubpages.com...

Anyhow, there seems to be a link between the two and I am being investigated for the condition.

In short, KPU causes low zinc and high copper and low B6.

Does anyone here know if these nutrients could affect thyroid hormones? Again, labs are normal so T4 and T3 are being produced, but I am wondering specifically how zinc, copper, and B6 could perhaps cause thyroid hormone resistance or inability of thyroid hormone to work at the level of the receptor/mitochondria.

Interestingly, it seems that a lot of nutrients used to treat KPU are also those used to treat hypothyroid.

Thanks all,

[keeponbelieving]

Hey there-

timely post ! My son has just been diagnosed with this after 10 years of chronic fatigue - doctors said nothing to be done blah, blah , blah... He is just starting treatment so hopefully will feel better soon. Anyway - I looked into it and found that zinc is important for converting T4 to T3 and as I was put onto T3 only 2 years ago because I wasn't converting I thought maybe I was deficient too. To cut a long story short I know take zinc picolinate and the active form of B6 - P-5-P and I feel GREAT!!!!!!!!!!!!! I have loads of energy -sleep ALL through the night and wake up feeling normal. It has been a long road but it feels like the final bit of the jigsaw puzzle is in place. We are all so complex and need such specific help - but don't give up- i hope you get sorted soon. x

[suzannai in reply to keeponbelieving]

Wow, Keeponbelieving. Serendipity perhaps?!

That is so great that you have gotten some answers to your son's CFS. So interesting because CFS could be considered a hypothyroid problem.

I am assuming from your story that you didn't feel better on T3 only. May I ask how much you are taking? That is so amazing that you feel great on the zinc and p5p. Again, how long have you been on it and how much if I may ask you.

I do certainly hope this is the culprit and answer because high dose T3 180 mcg is just not cutting it at all ...no better after 3 months. For me all my symptoms began after a stressful period and I know normally this is when PD is triggered....anxiety, no sleep etc. and I wonder too since my adrenals were putting out so much cortisol if this increased the copper load further and reduced the zinc.

Did you son also have the blood test to check for zinc, copper and ceruloplasmin?

I am going in for one more test today but will start zinc and B6 asap. The other odd thing is that i have developed severe breast tenderness premenstrually, which could be low progesterone but also b6 and low zinc.

Fingers crossed please!!!

[keeponbelieving in reply to suzannai]

Hey there - the T3 made an immediate difference after 10 useless years on levo during which time I "developed" Fibromyalgia and a whole host of health problems...but there was still something not quite right - I knew I was not as well as I could be.

Over the past 2 years I have corrected my Vit D levels, (almost non existent!) and built up other vits but still had problems with sleep/high cortisol and sugar swings - would wake up at 1am - and had to eat something!!!!

I also started using Serenity Cream to restore progesterone - look it up!

Then found out about my son's condition - he is getting help from a consultant online at smartnutrition... and recognised a lot of it applied to me! I take 50mg of the zinc and 50mg of the p-5-p daily. I have been doing this for 3 weeks now and the results have been amazing! Will reduce the zinc probably after 6 weeks to 30mg as this is the recommended amount for "normal" people - but will see how it goes.

I am only on 30 mcg of T3 which I take in one go just after midnight - as this is the peak for "normal" production. everytime I tried to up it I went hyper - so twigged eventually ... I was taking too much! I wasn't prepared for lowering it but guess the RT3 had cleared and the receptors were working again!

My endo has dismissed me from his clinic - as they are happy I have been stable on T3 for 2 years...my GP is supportive of what I do but not very knowledgable! The key for me I am sure was getting off the levo/supporting the adrenals/taking the T3 slow at first..building up THEN lowering it and finally getting all the nutrients and supplements in place.

Good luck with your ongoing investigations - keep going and you will find your answers! X

[suzannai in reply to keeponbelieving]

Hi

I am so glad to hear the T3 made an immediate difference for you. I am on a high dose and initially felt good but it has warn off (180 mcg or 225 mcg) - I know it sends people into a tailspin!! Either way, there is a "glitch" somewhere as this amount should either make me feel great or make me feel crazy and that is not the case. Still tired, sore, Fibrolike pains, puffy faced etc.

It is very funny that you mention progesterone as I just posted about this on another facebook page because my doctor recommended it. I am young-ish, only 35, and menstruate regularly but her thinking is that because I was under such high stress for so long (crazy traumatic experience...) and cortisol was sky high, the body used progesterone to keep maintaining the cortisol levels leading to low progesterone and high estrogen. Both of which can cause problems at the receptor level for thyroid hormone so it is possible if this is the case that the T3 is just not getting into the cells.

That is such amazing news about the zinc and P5P at relatively low doses - may I ask what improvements you have seen and if they were relatively immediate? I am still waiting on my PD test - hopefully that will show something. I know my adrenals also need help but I am not sure what to do for them as urine and blood is high but saliva shows low normal and then high normal. Perhaps just Bs and Cs for now which will help regardless.

Thanks again and all the best,

[keeponbelieving in reply to suzannai]

Hi,

I hope you find the key soon - its so frustrating when they keep telling you the labs are "normal" - problem is they only know what is circulating in your blood and not in your cells...but they would never admit this! Are you getting help?

What were you on before T3? When I developed Fibro -my body was telling me to get rid of the levo...but I didn't know this for years as they kept telling me that was all that was available. Looking back I now understand that my body was trying to get rid of it -but at the cellular level I was still grossly undermedicated - hence all the fatigue/low metabolism/aches and pains...but TSH all "normal"...so they wouldn't look into it.

Before I switched to T3 - I had no thyroid meds for 6 weeks...Dr P gave me Cortef to support the adrenals - but it was still ages before the receptors started working again.

The zinc and P5P had an immediate effect on sleep/stabilising energy levels and removed morning dizziness. It has also cleared up this weird "inner tension" - that I have lived with for years - hard to explain..but completley gone! I feel normal again and recognise the "me" I used to be....

Hope you find your answers soon. X

[Spareribs]

That's a very interesting article thank you

Patients were administered high dose niacinamide (Vitamin B3) converted from 'Mauve' positive to 'Mauve' negative.

I also suspect Zinc being the cause of my inability to taste/smell.

Minerals needed for Thyroid function are mentioned in Dr Osbourne's video (near the bottom of blog)

healthunlocked.com/thyroidu...

Jane

anyone not signed the petition yet?

healthunlocked.com/thyroidu...

[suzannai]

This is interesting, thank you Sparerib. I am very interested in finding out about nutrients that affect how the thyroid hormone binds to receptors and is used at the cellular level. For me the conundrum is that all thyroid labs are normal including antibodies and I have severe hypo symptoms including myxedema of arms and face. That said, I am on a very high dose of T3 so one would think that if I was no hypo I would feel hyper on this dose. I have been o n180 mcg of T3 for 3 months...no changes, and if anything possibly worse so I am missing something. ..... nutrients, metals, progesterone.....??

[Spareribs in reply to suzannai]

that Is a high dose of T3 - I know of another member on a high dose.

I too am still looking for the missing link - but on NDT & still waiting for the magic to kick in!

[suzannai]

Yes, it is a high dose and I don't know if pooling is what is going on now. I will keep at it as ultimately if anyone figures this out it will be me with the help I get here and on other forums.

[davetrindle]

I have both hypothyroidism and pyrolle disorder. I’ve been successfully treated for both, but my hypothyroid is very unstable and not well controlled even though i take t3 and NDT. Tests show it is not the common hashimoto’s type. I wish I had more info.