I am calling out on those who have experience o... - Thyroid UK

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I am calling out on those who have experience of taking Seaweed on top of thyroxine and would like to hear your views!...

chimes profile image
35 Replies

Hello there

In my other post I got mixed information. I am a lady that likes to think outside the box and I have already reduced my medication through other means 10 times. I am now on my last tiny dose of 50mg. I have taken Nori yesterday and took a piece of dark chocolate which was naughty and that some how caused some side effects but not many and I know how to treat my symptoms using far eastern culture methods, diet,etc. As Nori is very low in iodine. I want to know how many of you patients out there have tried taking seaweed and how has it affected you? My goal is to come off the thyroid medication.I am very determined. I am sure there those who take this medication as well as thyroxine. I know taking seaweed is controversial however I would love to hear from those who have been like stuff this think outside the box and stuck up their fingers to medical convention:) Any other wee tips are welcome!

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chimes profile image
chimes
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bluebug profile image
bluebug

Seaweed has unknown amounts of iodine in it.

By that I mean with good supplements the amount of the active ingredient is strictly measured and reflected on the label like with medication, there as with poor supplements and food the amount of active ingredients is an estimate.

This means regardless of your thyroid status if you are supplementing iodine you are told to avoid using seaweed to do this.

jimh111 profile image
jimh111

Just adding iodine, one element in thyroid hormone will not make a difference unless you are iodine deficient (and unless you take too much). How were you diagnosed hypothyroid? Did you have a high TSH or low fT3, fT4? If you have primary hypothyroidism (insufficient thyroid gland output) it can occasionally recover (e.g. after pregnancy) but usually you have to replace the missing hormone. This can be with synthetic medication or NDT. So the cruical question is what was your thyroid status on diagnosis?

greygoose profile image
greygoose

You did not get mixed information, everybody told you not to do it. And you're not thinking out of the box, because your thinking has nothing to do with the box.

You have no idea why you are hypo, so you have no idea if you need extra iodine - which, by the way, you are getting from your levo, and if the iodine from the levo hasn't cured your hypo, then eating nori isn't going to, either.

But, if you are determined to experiment, at least get your iodine tested first.

Oh, and what are you doing about your nutrients that aren't optimal? That could be why thyroid hormone replacement isn't helping you. :)

CarolineC57 profile image
CarolineC57

To add to what the others are saying (and said on your other thread), don't forget that, although levo is synthetic, it's hormone replacement NOT a drug. So, if you want to do this the natural way, why not consider NDT if levo hasn't worked for you? If you're hypo, you need hormone replacement of some kind. If you don't like synthetic hormone replacement why not try more natural hormone replacement with NDT?

Take a look around this forum (and the main website) and see what other people are doing. Honestly, this forum is full of people who "think outside the box" and have helped me tremendously.

chimes profile image
chimes in reply to CarolineC57

I just simply dont have that kind of money for pig thyroid medication and I believe balancing body chemistry is key!

why add a bunch of hormones? why not help the body recover by giving it what it needs and helping the organs clean up and balance out?

as for bad life style you could say i have been abused etc then mental problems then this?

if its helping you fine but there are those on low incomes that struggle! I am trying to find a way to get well!

right well I will look into ayurveda medicine. sure thats expensive but cheaper than ndt

humanbean profile image
humanbean in reply to chimes

How much do you think NDT costs? And which brand are you talking about? There are several of them available and they don't all cost the same.

SeasideSusie profile image
SeasideSusieRemembering in reply to humanbean

chimes Just to add to humanbean's reply, pig thyroid medication (NDT) can be purchased direct from a reliable and recommended seller for £34 or £38 for 1000 x 1 grain tablets depending on brand. Not sure if that is within your budget. If your body simply doesn't produce a life sustaining hormone then it needs to be replaced.

Jazzw profile image
Jazzw in reply to chimes

Why do you think you need NDT? What evidence are you basing that on? It might be that you've needed more levothyroxine all along.

chimes profile image
chimes in reply to Jazzw

well this raises the question about thyroxine - It seems the chinese and indians have it all sussed! what is blocking inside your system that is causing the thyroid to give up? See all these medical terms in western medicine - they stress me out! Its so clinical! does it not stress you guys out? trawling through the internet and when experiencing all these symptoms that drives you doo lally la? surely the synthetic crap is putting a toxic burden on our systems thus making us a bit blurgh and more ill!

seaside who is the seller and how reliable? are they based in thailand or?

I want to be pill free, I understand we are all attached to a chemist. However, I dont want to constantly go to the chemist constantly to get my meds! I want to be a travelller and live abroad and the last thing I need is this oofff I need to take these pills every day and ufff I need to go to the chemist and uffff go to the doctors to get my bloods done all the time! ufff I feel like crap iufffffff I got to trawl through the internet...no offense and thanks for the help!

Jazzw profile image
Jazzw in reply to chimes

Once you find the right dose of levo for you, it's likely to stay at that dose for a long time. Every country in the civilised world will happily let you have levothyroxine. But please, listen to Grey Goose if you won't listen to me. You can't fix this problem by alternative means. You feel crap because you need to take thyroid hormones and you've weaned yourself down to taking practically none of them. You're on your way to an early death, never mind about traveling anywhere. Please stop fighting your diagnosis. You already have your hands on the magic cure. Levothyroxine works brilliantly well for the vast majority of people who are prescribed it, once they're prescribed enough of it. It isn't synthetic crap. No one should bad-mouth levothyroxine without giving it a good go - it's revolutionised the lives of folk with hypothyroidism.

And yes, there are a percentage of people who find they need to find something else but you won't find many who found that the answer was Chinese medicine or iodine. And please don't think that "we would say that, wouldn't we?" Because the people who post here are generally the ones who've had to fight hardest to get optimal treatment. We are not people who toe the party line - we're the people who've been where you are and have come out the other side. Please stop treating the great replies you're getting here like the "enemy" - we really do know what we're talking about.

vixvixvix profile image
vixvixvix in reply to chimes

Ok. I've been under the care of a fantastic TCM for a few years now. She managed to reverse my polycystic ovarys because that's caused by hormonal imbalance. At no point did she ever say or offer Chinese herbs, acupuncture or any other traditional Chinese medical techniques for hypothyroid. She is a trained western/ Chinese doctor and is anti quite a few western drugs, big on lifestyle changes. At no point did she ever dangle "going off thyroxine" at me because it's not something Chinese herbs can do.

Sorry to burst your bubble, but TCM is not magic, it can only do so much. It can make you be the best your body can be, but as she succinctly puts it in a very blunt Chinese way to me, "you have to live with your sucky genes and accept it".

If we can heal our thyroid so easily, we won't spend hours talking about t4 vs t3 vs ndt. We'd be talking about how we heal our thyroids. Yes, I've got over one hormonal hump I'd never thought was possible so never say never, but the earlier you make peace with yourself and your condition and stop fighting it, the sooner you can work with it and make yourself be the best you can be, whether it's by optimising diet, minerals, vitamins or your thyroxine dose.

I don't want to be mean and say don't try Chinese medicine because it doesn't work. I'm a massive believe in TCM. I've seen people with terminal cancer live way way way beyond the amount of time the doctor told them they could live from it. But getting rid of hypothyroidism? This is one thing it won't be able to do.

greygoose profile image
greygoose in reply to chimes

Don't you think we all want to be pill-free? Do you think any of us actually like taking them? No, we don't. But, it's better than the alternative. Besides, even if iodine could replace thyroid hormone - which it can't - don't you think you would just be swapping one form of medication for another? You'd still have eat seaweed day in, day out, until you're sick of the bloody stuff! And what if you find yourself in a place where you can't get nori? And there are plenty of those. Whereas, most places in the world you will find a pharmacy.

I understand you want not to have this illness, but I want to have a chateau on the Loire, and I can't have that, either. We have to play with the cards that were dealt to us. And you and I got a bad hand - just like everyone else on this forum. Tough. We just have to get on with it. Because all the wanting in the world won't change any of it.

But if it comes to travelling, and living abroad, lots of us do that. I live in France, and I've travelled to many countries. and I was able to do that because I take my thyroid hormone replacement like a good little girl. Not levo, it's true, because levo didn't suit me. I need to be on T3 only. And what you need to do is find the type of replacement that suits you. But, it won't be iodine, because iodine is not a form of thyroid hormone replacement. It is a trace element, a disinfectant, and one of the constituents of thyroid hormone.

Oh, and by the way, I was prescribed iodine by an ignorant doctor who believed that all you had to do for a wonky thyroid, was throw iodine at it! It made me so ill! I probably wouldn't be in such a bad way now, if he hadn't done that. It didn't cure my hypothyroidism, cleanse my gland, or anything else. It just made my symptoms ten times worse. Hence my desire to warn others not to make the same mistake. We are your friends, here, as Jazzw says, not your enemies.

Hugs xxx

chimes profile image
chimes in reply to greygoose

hugs

i dont want to be enemies xxxx

i just wanna say this have any of you tried cannabis?

you hear people curing their autoimmune disease,etc.

surely that can help the signs of death and reversing thyroid disease?

greygoose profile image
greygoose in reply to chimes

I very much doubt many people in the UK have tried cannabis, it's illegal! Same here in France. OK, you might be willing to break the law, but where would you get your supplies!?!

I don't know whether it would cure the autoimmune side of Hashi's - perhaps it would. But it would not restore the damage already done to the thyroid gland by the autoimmune attacks. The gland does not fully regenerate. So, even if there were no more attacks on it, it would still be unable to provide you with enough thyroid hormone to make you well.

Once you have been prescribed thyroid hormone replacement, it means that the gland is damage beyond the point of return. So, you are still going to need that hormone replacement in order to live a healthy life. There is no way you can get round that.

And, believe me, we've seen it all before, people who had a plan to heal their thyroid and stop their levo or whatever. They even went completely off it. But they soon needed to go back on it. Cannabis, iodine, TCM, whatever. It's all been tried before, and none of it can restore a damaged gland to full working order. Sorry. :(

greygoose profile image
greygoose in reply to chimes

We're not 'adding a bunch of hormones', we are REPLACING the hormones your body can no-longer make for itself. And it doesn't matter how much you balance the chemistry - actually, taking thyroid hormone IS helping to balance the chemistry - nine times out of ten, the thyroid cannot recover. It just can't.

Giving the thyroid gland iodine, is not giving it 'what it needs', it's giving it more raw materials to make more hormone - every molecule of T4 has 4 atoms of iodine - that's all the iodine does, it doesn't cure anything, it doesn't 'clean out' the organ in any way. And, as I always say, if half the factory has burned down, shovelling more raw goods in, is not going to increase production.

Iodine stimulates the gland, sure, but it does not repair it. And long-term, that stimulation is going to make it burn out faster. And then you will find that you will be so ill, and iodine will not replace hormone. Giving your body what it needs, means giving it hormone. You cannot live without thyroid hormone. That's why.

radd profile image
radd

chimes,

As you do not have antibodies a little Nori Seaweed is fine and iodine is required to make thyroid hormones. However, unless you are iodine deficient you will not be able to tolerate large amounts whilst medicating thyroid hormone replacement which already has the iodine incorporated within it. If you have too much iodine you may become hyper as it will increase thyroid activity.

Your reversal of treatment is controversial because it depends on why you have low thyroid hormones in the first place. If it was say after having children, this often reverts back so a little extra iodine may be good or if you are actually iodine deficient or your condition was caused through an unhealthy life style.

However, if your hypothyroidism is something more permanent and the amount of hormone to be replaced exceeds that of what the extra iodine can make, you will have a hormone deficit and become very ill.

Eat Nori because you enjoy it and not in an effort to replace those missing thyroid hormones.

shaws profile image
shawsAdministrator

Do you realise that hypothyroidism can be fatal if untreated/indertreated? That's why we do not pay in the UK for any other prescriptions for any other illnesses or diseases. Maybe yours isn't so severe yet.

Too little thyroid hormones may cause heart disease, cancer or diabetes. Optimum hormones keep us optimally well with no symptoms.

Jazzw profile image
Jazzw

I assume you're now on 50mcg of levo, not 50mg. 50mg would be a massive dose.

Please don't think we're being unhelpful - we're worried about you. We see lots of people try to heal themselves of something that often can't be healed - if your thyroid is packing up, either because it's under attack from antibodies or because it just isn't up to making enough thyroid hormone any more, there's nothing you can do to put things right using "natural" means. More iodine is likely to make things worse not better - there's evidence to suggest that taking iodine in larger doses actually causes Hashimoto's disease.

Many get confused about hypothyroidism and about hormone replacement - you aren't taking medicine to make it better, you're taking replacement hormones to make up for the hormones your thyroid can no longer make. Undertreated hypothyroidism causes a whole host of other problems - from liver disease to gastric problems, from painful feet to headaches, from foggy thinking to obesity. Please - think carefully before abandoning prescribed hormones.

chimes profile image
chimes in reply to Jazzw

yes 50 mcg and have any of you tried eastern medicine?

chimes profile image
chimes in reply to chimes

does it work?

radd profile image
radd in reply to chimes

chimes,

I am a big fan of TCM & believe it may help and heal a whole host of issues but the fact remains if you have missing thyroid hormones, they will need to be replaced.

We are back to the question of why you have low thyroid hormone again ? ? ...

bluebug profile image
bluebug in reply to chimes

Lots of herbs used in Eastern medicine that are proven to work actually contain the chemicals that are used in pharmaceuticals.

Where do you think research scientists get their ideas from about what medicines are likely to work? From traditional herbal medicines used through out the world.

They basically workout how to synthesise what is made in nature if they can e.g. aspirin. If they can't they just simply use the extract from plants e.g. galantamine

BRENK profile image
BRENK

I have been on Levothyroxine for over 20 years.Now my doctor is sending me to a specialist because he thinks I have Hashimoto disease because my thyroid level is up and down and all these years doctors just increased or decreased level. I have foggy thinking more and more now. I am 64 years old. Sometimes I even forget how to get to places in town I've been to a 100 times and have to try to think how to get there.Wish I knew something that would clear foggy thinking. I was wondering about b12 as I'm on it too.

SeasideSusie profile image
SeasideSusieRemembering in reply to BRENK

BRENK It would be best if you started your own thread as it will be seen by more members and you'll get more replies than than being hidden amongst someone else's thread.

If you get as many of your test results that you can and post them with as much info as possible so members get a full picture, then you will get suggestions and advice. If you haven't got your results, ask your surgery for a print out, make sure you also have the reference ranges. They may make a small charge for printing and can't refuse as you are legally entitled to them under the Data Protection Act.

If you've got results for, or can get tested for, the following then it would be very helpful:

TSH

FT4

FT3

TPO Thyroid Peroxidase antibodies

TG Thyroglobulin antibodies (rarely done on the NHS though)

Ferritin

Folate

B12

Vit D

BRENK profile image
BRENK in reply to SeasideSusie

THANK YOU

Listen! if you want to take seaweed, talk to a fully qualified medical herbalist/good well informed doctor if you can!

estelle08 profile image
estelle08

I take seakelp 500mg to assist t4-t3 transfer as gp says level is in high normal range it improved energy levels and skin hair and nails as my nails never grew and I was loosing my hair part of my fibromyalgia I would be careful if on thyroxine as can go low as you obviously know. So pleased with the results as many of my blood tests are borderline and the gp won't entertain and mild treatment and I refuse to suffer when there is an answer next step referring to a homeopath

chimes profile image
chimes in reply to estelle08

wow I suspect you don't have autoimmune disease?

estelle08 profile image
estelle08

Call me foolhardy I suppose all you with independent knowledge will start a discussion over stupidity but everyone has different experiences and you can always walk in my shoes

greygoose profile image
greygoose in reply to estelle08

Been there, done that... ruined my life!

chimes profile image
chimes in reply to greygoose

there are plenty in the uk that do as many keep their mouths shut! most people in the uk are open about cannabis use. if you go to Durham you can grow it at home and police won't arrest you

there are three places in England that do it!

its decriminalised to a degree. basically cops will not bother those who take it for personal use.

greygoose profile image
greygoose in reply to chimes

Well, maybe so, but I can't comment on that, I have no idea. But, I repeat, you might get rid of your antibodies, but you cannot restore the damage already done to the gland, and will therefore still need thyroid hormone replacement.

Eachel profile image
Eachel

Hi chimes :)

I have had hashimotos for 23yrs the doctors put me on thyroxine(200mcg) Even though my levels were always good on medication I constantly felt extremely tired, cold and struggled with my weight. 4yrs ago I started eating seaweed 3 times a week, my test levels improved and my medication was reduced again and again and now don't take thyroxine at all. My doctor still test me every 3 months and is impressed at how well this has worked for me. I have more energy, my weight has settled and I don't feel the cold anymore. I'm not saying this is for everyone but I'm saying it worked for me. I feel like I lost many yrs of my life complaining and feeling bad with no-one listening just telling me I had to take my tablets (medicine) for the rest of my life. I think if you have had success before then why not try it-tell your doctor what your doing an set up tests to monitor what happening.

Eachel profile image
Eachel in reply to Eachel

and its just nori sheets(2) - I wrap my salad in it for lunch and eat it like a wrap :)

greygoose profile image
greygoose

Taking iodine/kelp really isn't recommended for people on thyroid hormone replacement - no matter how much nutritional goodness there is in kelp! It could make things ten times worse.

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