Info that might be useful to someone: I have been... - Thyroid UK

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Info that might be useful to someone

magsyh profile image
25 Replies

I have been trying to solve the puzzle of why I am hypothyroid for many years. Ive tried about every test, seen gps, endos and gone private. No one has ever been able to solve my mystery. Ive always been borderline with low ft4 and ft3 and can convert no problem. Ive had vitamin tests and they showed all the normal low b12, folate, ferritin and vit d. I spent near a year getting them to optimal levels and blood test showed ft's even lower only my tsh up to 2.1 I have tried ndt, and levo and very little difference only thing imptoves is my tsh. I dont have hashimotos so I figured it has to be nutritional. I went to the expence of doing an advanced nutritional course so i could learn what made my body tick? So this is what I have learned that may be of help. We all need iodine and tyrosine to make t4. We need selenium to convert it to ft3. Most of us know that but I discovered I was dificient in phlenylanilin. Its the amino acid that converts to tyrosine. So I asked quite a few so called experts why is it im only defficient in that one, the one I need? They all scratched their heads. So further reasearch shows you need enzymes in your gut to release the amino acids from food. If protein isnt broken down properly it gets into the bloodstream. Eating fresh pineapple and papaya breaks down protein and releases the amino acids. Phlenylannilin ( why is it the one i cant spell) then crosses the blood brain barrier and converts to tyrosine which combines with iodine to make t4. Another big factor is progesterone. I also discovered im progesterone difficient with >0.2. Im also low in estrogen but the ratio is too low. This is where it becomes complicated as vit d is made from cholesterol. Cholesterol and vit d is also needed to make progesterone. Under stress progesterone is stolen to make cortisol. Progesterone is also needed along with b2, b6, zinc, vit a to produce t4. I was found to be difficient in b2, b6, vit d, b12, folate, ferritin, iodine, selenium phlynelannilin and progesterone. My lowest results were when i wasnt using progesterone cream as a suppliment. I hope this puzzle helps someone else out there xx

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magsyh
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magsyh profile image
magsyh

maybe its why so many of us are ill and miserably unwell even after treatment? Maybe levo is just another band aid medication thats only truly useful to us if our thyroid has given up on us and it can be used as a replacement hormone. Those of us with subclinical maybe difficient in something important but the docs will never take the time to see us as individuals and help us find the answer. Surely if we dont have hashimotos its got to be nutritional defficiency? Kelp is the only thing that stops my bad headaches but its only advisable with selenium to protect your thyroid. How many of us are suffering and getting no help from gp because all your blood tests are normal in their eyes? Ive seen many gps been on my knees with pain and hypo symptoms and have been told go home its all in your head or how about an anti deppressant for your menopausal anxiety - no, no ,no xx

KT77 profile image
KT77 in reply tomagsyh

You might be right with the deficiency. In theory if the thyroid had all it needs why would it not work? I take drop of iodine every morning. It gets rid of my cellulite in like 2 weeks. You also need iodine to create stomach acid. Vitamin D is like a miracle in a bottle. All the body aches are gone and my blood sugar is nice and steady. I read a book about vitamin D and the guy who wrote it said that instead of T3 people should take D3, apparently its does the same thing plus it repairs the body too. I think it is just his theory though but who knows. As I can't get my hands on any thyroid medication to try to shrink my goiter the vitamins are my only hope : )

magsyh profile image
magsyh in reply toKT77

what do you use for iodine? I bought lugnols 2% but a bit worried about using it? I watered it down 7 times as per instructions but im a bit worried about using it? I stopped taking kelp when i was taking levo as an experiment and im in terrible pain now. In the past only thing that stopped the pain was kelp. If your using iodine please dont do it without taking a selenium suppliment as its the only thing that will protect ur thyroid from harm. Im off levo now but worried about using kelp while its still in my system as when i tried to take both my heart rate went crazy x

KT77 profile image
KT77 in reply tomagsyh

Nascent iodine. One drop is only 400 mcg so not too worried about overdoing it. I think upper limit for daily iodine is 1100mcg. I have Lugols 5% but use it on the skin only once in a while. I take selenium 2-3 times per week. I take the nascent iodine 5 days on 2 days off just in case.

SeasideSusie profile image
SeasideSusieRemembering

Really interesting magsyh . Well done on studying and unraveling the mystery!

Fresh pineapple, yum! Is there a recommended amount? Is pressed pineapple juice (in preference to 'from concentrate') an acceptable alternative? I'm probably just about there with everything else :)

Can I ask where you got everything tested?

mistydog profile image
mistydog in reply toSeasideSusie

Yuck, can't stand pineapple or papaya! What would convince me is if there were much less issue in the Caribbean, as they use these fruits all the time.

magsyh profile image
magsyh in reply toSeasideSusie

Hi only fresh pinapple and papaya have an enzyme called bromlaine. Oh my spelling but im sure you know what i mean. If its heated or treated its destroyed. I had myself tested 2 years ago by a company called testmyintolerance. They are online. When I got the result it didnt mean much to me but now I know what they were talking about back then i have been able to put the info together and could kick myself for not knowing. They tell you about all your food intolerances and vitamin defficiencies but they dont point out how they go together. Mine came back with all the ones that were obviously connected with thyroid defficiency. They even had bromlain on the list! They have an offer of 25% off at moment i notice now i have checked if they are still on go. You just send them a few hairs, not difficult if you are hypo, and within 2 days you get result they test 680 things xx

SeasideSusie profile image
SeasideSusieRemembering in reply tomagsyh

Thank you Magsyh :)

Is there a recommended amount of fresh pineapple?

magsyh profile image
magsyh in reply toSeasideSusie

Not that I have read its just good to eat esp after beef as it takes so long to break down. I did read once that beef took up to 2 days to digest. Its also a natural anti inflammatory xx

mistydog profile image
mistydog

I would be interested if there were a study on this in the Caribbean, as they eat them all the time.

magsyh profile image
magsyh in reply tomistydog

well actually afrocaribbean women are more likely to be large ladies with subclinical hypothyroid and fibroids. The part of the puzzle for them is lack of progesterone. They need far more vit d because of their skin colour. Most people in hot places are actually vit d defficient because of their skin colour or hiding away from the sun. They probably get their vit d from the fish they eat which is not enough. Like I said we are all different and all have a part of the puzzle we have to find for ourselves. For them it doesnt matter how many pineapples they eat they have something else missing. Most likely progesterone/ estrogen imballance.xx

mistydog profile image
mistydog in reply tomagsyh

Interesting.

greygoose profile image
greygoose

I'm a bit confused, here. Are you saying that Phlenylannilin converts to tyrosine in the brain? Why would that be?

And are you saying that you became hypo because of all those deficiencies? Isn't it more likely that you had all those deficiencies because you were hypo?

magsyh profile image
magsyh in reply togreygoose

Ive been hypo since I was a child as I was given levo at the age of 5. I couldnt swollow it so nobody bothered they just gave up. Ive always been borderline had a lifetime of aches and pains and symptoms. Ive gone through life not eating seafood, I dont eat bread etc. I also had gallbladder removed 23 years ago and had the runs everyday. I just didnt absorb any nutrients that i really needed. It wasnt untill i started on vit d that my life changed. I had acute diverticulitis and i asked them why my food came through without being digested(tmi!) I could tell exactly what i ate the day before. They didnt even bother to find out. Since taking vit d all that has stopped. My body is settling down and im begining to feel well. Ive had a life time of feeling terrible so Im doing all I can to put it right.

greygoose profile image
greygoose in reply tomagsyh

Well, yes, I realise you're doing everything you can to put it right. Good for you! But those questions are still valid.

magsyh profile image
magsyh in reply togreygoose

Its a what came first chicken or the egg. This is problem with hypo if you dont have hashis. Defficiency causes hypo, hypo causes defficiency its a visious circle. What do you fix first something I have lived with most of my life. Phlenylannilin crosses the blood brain barrier converts to tyrosine which then converts to dopamine. Its also converted in liver and kidneys.

greygoose profile image
greygoose in reply tomagsyh

OK, I understand that better now, thank you.

As to what do you fix first, well, when you have no proof as to what caused what, personally, I would always start by thyroid hormone replacement, so that the body has enough hormone while you fix the nutritionals deficiencies. If it was the deficiencies causing the hypo, then you should be able to come off the hormone once the deficiencies are fixed. But, if it was the hypo causing the deficiencies, even once the deficiencies are fixed, you would still need to stay on the hormone. That's a no-brainer, as far as I'm concerned.

Cup-cake7 profile image
Cup-cake7

I'm sorry to keep harping on about leaky gut folks but if it's leaking then all that we take is mostly invalid, so surely GG it's the foundation of it all. And stomach acid to be tip top, if poss, the ailments, hypos etc manifest if predisposed. We are all individual so get one thing or another

Fab help there mags, at least I still have a vague Intuition going on with this dyer brain fog 😊 I fancied pineapple and bought some tins last week, ha net had it for donkies haha.

Thanks about tyrosine, etc,

I've got a parcel to come it's at customs, so probably the Progest e, Xxx

Cup-cake7 profile image
Cup-cake7

Understand Gg what you are saying, but I hate the idea of surpressing my own t4 production, when it's not a bad number anyway, then it all seems to get complicated

Theoretically the thyroid is a neat gland that sits there and does what it is told or sadly gets attacked sometimes, it gets a lot of slack with terms like thyroid problems haha its the processes more like

I'm in process of checking adrenals as this is Horse before cart I've read 😊🌞

Tempted to take t3 though for some hopefully instant upliftment, what do you think about this pls?

Cup-cake7 profile image
Cup-cake7

A concern also is can you come off the hormones once the gut and vitamins are sorted, of the tsh has been suppressed with lots of t4? Will your body stop bothering in other words?

magsyh profile image
magsyh in reply toCup-cake7

Problem with levo is if thyroid is suppressed its function is basically switched off and you are running on levo. Thats what put me off. Its then difficult to come off levo because it can take up to 8 weeks for your thyroid to start functioning again and that depends on its condition and how well its functioning in first place? I think if your thyroid isnt functioning well you need the levo as a replacement but if your thyroid is a bit dodgy due to lack of nutrition why shut it down and replace it? This is the big question. The engine wont run without the proper fuel so why not put high grade fuel in instead of deisel? Xx

Cup-cake7 profile image
Cup-cake7

Agree totally mags, same wave length, I'm for protecting body, if working ok, it's built in, lol

I know a 91 year old who won't take levo as says 'but it's for life'!!!!! For me I will decide when to give it over when all else fails, I wont enjoy getting into a maize of numbers as it's not me lol

Yes, I got my t4 result yesterday and it's a bit lower in range than six weeks ago after taking levo so yes it proves your point and also why I'm probably feeling even more xxxxx

Thyroid just does what it's told, this makes me 😊 It's a very sturdy loyal fellow woman lol

Cup-cake7 profile image
Cup-cake7

Yes, good fuel, good water (iodine) well maintained adrenals, (in the loop too) and good tummy!! To absorb everything properly

That's the ticket 😊👍😊🤒

Cup-cake7 profile image
Cup-cake7

Nurse said to me when I hit a tsh 4 that my pituatory is working twice as hard as other folk with low tsh!? Is this relevant

Cup-cake7 profile image
Cup-cake7

But if we Don't surpress tsh with levo the tsh won't go low so supposedly will not feel well unless a one

Can anyone say if this maters, e.g. If you take n d t to feel better from the t3 in it?

Also the t4 in n d t won't be good for you I guess as read low dose t4 (levo ) is not good ?

Is it just as well to take t3 on its own, if your own t4 level is ok but tsh is a bit high ?

To me this is the million dollar question, sorry gotten confused

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