poison: hi all, I'm a bit concerned at the... - Thyroid UK

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Angelic69 profile image
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hi all, I'm a bit concerned at the information I was given yesterday by an alternative herbal medicine doctor. We talked about my thyroid condition and the meds which the nhs prescribe for it. basically ive been told that what I'm taking is poison and I should stop taking it by gradually reducing the dose and to take kelp instead. last time I came off I came off to quickly and had bowel and hair loss issues which I informed the doctor about but I hadn't taken any alternative eg kelp to help my thyroid deal with the daily demands so I think I might give it another go, what do you guys think.

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Angelic69
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SeasideSusie profile image
SeasideSusieRemembering

Angelica69 - I too am concerned about what your alternative doctor has recommended. He is suggesting taking you off a hormone replacement, a hormone that your body needs and can't produce itself, and basically replacing it with iodine. Has he tested and found you to be iodine deficient? Iodine should not be taken unless there is a known deficiency.

Angelic69 profile image
Angelic69 in reply toSeasideSusie

alternative medical professionals make there diagnosis by looking at your body as a whole and determine health by this means. Blood tests are fairly modern in comparison and mistakes have been known. And yes clutter kelp is no substitute for our hormones but as you would have noticed by how many people post here neither is levo and other medicines that are used by mainstream nhs doctors. And clutter have you seen the long list of side effects that taking levo can cause pls take these into consideration when helping me as I am already overwhelmed by what I was told yesterday, eg, poison. Greygoose I've always had symptoms from both hypo and hyper columns which could also be symptoms of bad diet, low iron ect which I have addressed. Main concern was bowl movements which would suggest hypo but also could be the result of a prolapsed or position of the rectum due to teenage pregnancies and very large birth weights of children born which could also be treated by using acidophilus which suggests that it may not be down to hormone deficiencies. Pls guys give me more feedback on this post

Clutter profile image
Clutter in reply toAngelic69

Angelica,

Your alternative medical professional's advice about Levothyroxine and kelp is dangerous rubbish. Have you checked what his qualifications are? Any medication or supplement can cause adverse effects including kelp. I'm perfectly aware that Levothyroxine doesn't suit everyone, however it is NOT poison. If you are unable to tolerate Levothyroxine you could try adding Liothyronine (T3) or switching to T3 or NDT.

Angelic69 profile image
Angelic69 in reply toClutter

The qualifications are only relevant if the governing body that awarded them are in power, however going of physical appearance which is recognised universally to all sighted indivduals, this doctor is in good health therefore would know how to achieve good health.

Greenwall profile image
Greenwall in reply toAngelic69

Hi Angelica69.

Your initial post asked "What do you guys think". Well lots have given you their opinions, as requested, and the following is my contribution, which are not meant as criticism of you, so I hope you don't read them as negatives.

I disagree with your statement that "if doc is in good health would know how to achieve good health."

For years I was in excellent health. Now I'm not. So if I was in good health once, by your theory I should know how to achieve that again. Also a friend has lupus, but I don't know how to make her well, despite me being in better health than she is.

Qualifications can be fake; and have nowt to do with a "governing body being in power" either. Anyone can set up a course/college and issue a piece of paper. The paper does not mean that they know all the answers for everyone. I've met folk with paper - some know nowt, and others are excellent.

Have you asked this doc for evidence to support the advice given?

I wonder why you went to see alternative doc in first place? Presumably you weren't happy with GP, and it sounds like you're not entirely happy with alternative doc either. I wonder what do you need to hear to be happy? Whatever it is, I hope you find it soon, it's awful being ill and not knowing which way to turn to get better.

Angelic69 profile image
Angelic69 in reply toGreenwall

I'm grateful for all posts as it suggests an interest in a common problem.

At the present time my doctor is in good health which suggests to me that an approach to survive this current climate has been achieved and that's a theory I'm using.

How to achieve good health again is a search I myself am in pursuit of I will share it with anyone with ears.

Qualifications are all to do with governing body in my world but I understand not all qualified people are recognised. I can not open a college so I disagree with you when you say anyone unless I'm not included in that title, eg anyone.

Why have I looked for alternatives, alternatives sometimes knock at your door and ask you to try. I'm happy with my gp and her approach but also believe in improvement possibilities, I'm hopeful of being even better and that answers your final question.

in reply toAngelic69

I really don't understand your first and subsequent posts!

Angelic69 profile image
Angelic69 in reply to

that may be a good thing

Zephyrbear profile image
Zephyrbear in reply toAngelic69

That could just be down to his not having suffered ill health, but it doesn't necessarily qualify him to issue advice to others...

SeasideSusie profile image
SeasideSusieRemembering in reply toAngelic69

Angelic69 If you want responses from Clutter and Greygoose then they won't know you have mentioned them. You have replied within my message box so I'm the only one who gets notified of your response.

If you edit your reply and put @ directly in front of their user names (no space), a list of members' names will pop up and you click on which one you want, that highlights it blue and puts their name in blue in your message. They then get a notification that you have mentioned them and can reply.

I am very interested in what you say about Acidophilus treating prolapse. Can you elaborate and provide links please? I have a prolapse and have been taking Acidophilus or probiotics containing it for a long time and it hasn't helped mine. Or are you saying Acidophilus treats bowel problems (assuming constipation) as it hasn't helped my constipation either.

Clutter profile image
Clutter

Angelic69,

I think your alternative doctor is making dangerous and untrue statements and is likely to cause you great harm. Kelp is NOT a substitute for thyroid hormone. Kelp also contains high levels of iodine which can trigger Hashimoto's.

Angelic69 profile image
Angelic69 in reply toClutter

thanks clutter.

greygoose profile image
greygoose

Do you know why you are hypo? Are you iodine deficient? Are you taking levo?

Levo is not poison, I can't imagine on what he bases that statement. It doesn't suit everyone, but it isn't poison. It isn't a drug. It is just a hormone - T4 - that your body needs to survive. Without it - or something similar - you will die. Kelp is not something similar. It is very rich in minerals, but minerals cannot replace hormones. And one of the minerals, iodine is too high in kelp.

Iodine is one of the minerals needed for thyroid hormone production. But, if your gland can no longer make hormone, giving it extra iodine is not going to help - after all, if half your factory has burnt down, shovelling in extra raw goods is not going to increase production, is it? Even worse, it could have a negative effect - it will stimulate your gland - making you feel temporarily better - but the gland will just burn out faster under the pressure. Do you really think there's any point in that?

Excess iodine can have other undesirable effects, as well, including triggering Hashi's - as Clutter said - and if you already have Hashi's, it can make the symptoms ten times worse - and it can also cause thyroid cancer. So best avoided. If you are taking levo, it is highly unlikely that you are iodine deficient.

This man you've been talking to is dangerous and should, in my opinion, be struck off whatever register he might be on!

Angelic69 profile image
Angelic69 in reply togreygoose

alternative medical professionals make there diagnosis by looking at your body as a whole and determine health by this means. Blood tests are fairly modern in comparison and mistakes have been known. And yes clutter kelp is no substitute for our hormones but as you would have noticed by how many people post here neither is levo and other medicines that are used by mainstream nhs doctors. And clutter have you seen the long list of side effects that taking levo can cause pls take these into consideration when helping me as I am already overwhelmed by what I was told yesterday, eg, poison. Greygoose I've always had symptoms from both hypo and hyper columns which could also be symptoms of bad diet, low iron ect which I have addressed. Main concern was bowl movements which would suggest hypo but also could be the result of a prolapsed or position of the rectum due to teenage pregnancies and very large birth weights of children born which could also be treated by using acidophilus which suggests that it may not be down to hormone deficiencies. Pls guys give me more feedback on this post

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greygoose profile image
greygoose in reply toAngelic69

What exactly do you want to know? If you ask questions, you will get answers, but just posting that levo is poison, isn't a question - it's almost provocation...

Millions of people do very well on levo, but you won't find them on this forum - very few, anyway. I think Helvella does well on levo, though. If you're well and living your life, you don't have the time or inclination to go on forums for those that are struggling with their disease. You just go on and live your life.

Personally, I didn't do well on levo, either. But I did even worse on NDT - which is touted as being THE best and natural etc. I do best on synthetic T3 only - which some people also consider to be poison! But, we're all different, and we all need different things. And it's down to you to find out what's best for you - because, although we might try to help you, doctors won't. But, you mustn't make generalisations about levo being poison. That's just not fair.

There is a slight possibility that your hypo statu is due to iodine deficiency - but it's only slight, living in Europe. But, you need to get tested to find out before you even go near a kelp tablet. And, if you are, the solution is not just to take a few kelp tablets, it's far more complicated than that. You need to find a doctor who knows what he's doing to over-see your treatment.

But, did you actually know that one molecule of T4 (levo) contains 4 atoms of iodine? So, if you are taking 100 mcg levo, you are in fact ingesting 60 mcg of iodine every day. If that has not improved your symptoms, then I very much doubt that taking kelp will improve them, either, because - ipso facto - your problem is not iodine deficiency.

But you are right, a lot of your symptoms could be from other nutrient deficiencies. How many of those have been tested? Have you been tested for Hashi's antibodies? Because, whilst a lot of symptoms cross over from hypo to hyper, when you are Hashi's, it's quite common to have symptoms of both.

There is another reason for having symptoms of both hypo and hyper at the same time : when you first become hypo, meaning that their isn't enough T3 to go round all the millions of receptors, the body turns some receptors off, so that essential organs - such as the brain - can be well supplied with T3. The longer you are hypo, the more receptors have to be turned off - and, of course, turning off receptors, so that the cells don't get any T3, causes the symptoms - and so, your symptoms increase.

When you start taking thyroid hormone replacement, and the body is assured of a constant supply, it starts turning the receptors on again, one at a time. The result of that is that, whilst there are some cells still not getting any T3, and therefore causing hypo symptoms, other cells can be getting too much T3, thereby causing hyper symptoms. But all this sorts itself out when you reach your optimum dose. You obviously still haven't reached your optimum dose.

But, none of this has anything to do with iodine.

Angelic69 profile image
Angelic69 in reply togreygoose

It wasn't a question it was a fear that I was asking help with. You asked me what I wanted to know, well I suppose I wanted to know that you guys would support me through this new issue. Ive spoken to those people that claim they are doing fine on levo and got no relief from my fears. I personally didn't make the observation that levo was poison but had it laid on me and I'm sorry to lay it on you too but needed help.

The only link between the some cells get too much ect would be that when you body is in a constant state of stress it doesn't make any sex hormones, the hormones that give us good health and vitality and a general feeling of wellbeing. Instead it concentrates on the stress factor and will do so until it has exhausted itself resulting in high tsh levels. So I'm in agreement with you iodine alone will not solve the problem if that is the issue.

in response to the constant supply that you mentioned paragraph eight I think, thank you as I'm now linking the negative effects of receiving a constant supply eg can cause hypo and hyper episodes which would account for my having both symptoms. Again evidence to support that once a day levo isn't safe.

Optimal dose on whose scale and based on what variables. I'm a totally different person on levo some good aspects, eg I'm much slower to react so make less mistakes, I'm fairly stable in my moods, I sleep well at night and I eat well. On the down side ive lost most contact with my family, which may be why im a different person and not that of levo, I have more time to concentrate on my needs, again my be due to less involvement with family issues than meds but on a physical level im much weaker since being diagnosed and have experienced weakness in my hands, constant pain in my back which is worsened when around others, ageing of the skin, weakening of muscles and a general sense of vulnerability.

My overall thoughts at the present time are that a diagnosis of hypothyroidism causes premature ageing and levo on its own is not a cure but a patch.

greygoose profile image
greygoose in reply toAngelic69

OK, so you are, in fact, afraid that the herbal medicine doctor you spoke to, was right. Well, you can stop being afraid because he was wrong. Levo isn’t poison, it just doesn’t agree with everyone and, seemingly, it doesn’t agree with you. But, it’s a bit difficult to know because you didn’t post any results, and we do need those as a guide, really.

So, if levo doesn’t agree with you, why don’t you try something else? You won’t get much help from your doctor, I know, but you can buy your own on internet – perfectly safely. Just ask people for their sources.

No, I explained why some cells get too much and some don’t get any, and it has nothing to do with sex hormones, we’re talking about thyroid at the moment. Sex hormones do not cause high TSH, low thyroid hormones cause high TSH.

And I didn’t say that receiving a constant supply of hormone had negative effects, that wasn’t what I was saying at all. I was just explaining the process. It is certainly not evidence that levo once a day isn’t safe! Where on earth did you get that idea? I don’t think you’re really understanding anything you read.

An optimal dose on your scale! Optimal is when all your symptoms are gone and you feel well. Doesn’t matter where that falls with the TSH etc, as I said, labs are only a guide. It’s how you feel that counts. And, if you don’t feel well, you aren’t optimal. You are experiencing weakness in your hands etc because your thyroid levels are low (or maybe high, I don’t know, but you do need exactly the right amount of the right thyroid hormone replacement FOR YOU). It’s not because you are taking levo.

It’s not the diagnosis of hypothyroidism that causes premature ageing, it’s low thyroid hormones. And levo is not a patch. Some people’s bodies can process it perfectly well, it’s just that yours can’t, it would seem. But, no. You’re right. It’s not a cure and nobody ever claimed that it was. There is no cure. All we can do is replace the missing hormones, one way or another.

I don’t know, it’s seems to me you’re getting all this upside down and inside out. Even when I try to explain to you how it works, you twist it round to become negative. I don’t know what else I can say.

Tarry profile image
Tarry in reply togreygoose

I'm another person taking levo successfully. I joined this forum when I first became diagnosed as 'sub clinical' and before taking it for research purposes. GP shortly prescribed it thereafter and I've been lucky, I guess. But I would agree that the majority of people taking it are quite healthy and happy and you won't see them here. So I guess it's easy to get the overall impression that it doesn't work for the majority of sufferers. Whereas in fact it does. I used information gathered here to argue my case with the GP for being prescribed levo initially though. Lucky all round.

greygoose profile image
greygoose in reply toTarry

Thank you, Tarry. :)

diogenes profile image
diogenesRemembering

What herbalist doctors know about the thyroid would fill very little of the back of a postage stamp. His advice is positively dangerous and indeed nonsensical and if you have autoimmune thyroiditis, kelp's iodine could actually give you "thyroid storm". So pay no attention.

VulpusVulpus profile image
VulpusVulpus

Absolute nutter.

Ignore, ignore, ignore.

Angelic69 profile image
Angelic69 in reply toVulpusVulpus

not helpful

VulpusVulpus profile image
VulpusVulpus in reply toAngelic69

Eh?! That advice could kill you.

Do you want permission to stop taking a thyroid hormone and to take kelp instead? Why are you asking for advice/opinions then?

Angelic69 profile image
Angelic69 in reply toVulpusVulpus

not helpful

SeasideSusie profile image
SeasideSusieRemembering

Thank you Espeegee , I do actually use psyllium :)

puncturedbicycle profile image
puncturedbicycle

Is this a kinesiology person or am I thinking of someone else?

I went the route of Chinese meds and acupuncture and was assured my levels would improve and I would no longer need meds. Well my levels did improve (from 31 to 5ish on no meds) as they do. Thyroid hormone fluctuates all the time. I continued to feel awful and eventually had trouble getting back on levo as my gp considered my new results normal and didn't want to prescribe.

With respect, if you ask for opinions here you will get them. They may be different than your opinion. I wonder if you were hoping everyone would agree w you.

Bombus's opinion is that you should ignore the advice of this practitioner. I would say that in conjunction w the other thoughts put forward here that is indeed helpful to hear even if you don't agree.

I too would ignore. But Idk what you hope to achieve. Do you want to avoid all meds you see as synthetic or unnatural or - ?

On what basis do you believe that levo causes 'premature aging'? I can only provide my own anecdotal experience but I looked like a corpse when diagnosed - grey skin, thin hair - and only returned to wellness after treatment. My hair is thick, my skin looks peachy, and though I've never been a beauty queen I feel pretty good about my looks. My energy isn't great, but it's exponentially worse without my meds.

Sorry to say if you need thyroid hormone treatment you need it. All medical advice backs this up. If levo doesn't agree w you then there are alternatives.

Angelic69 profile image
Angelic69 in reply topuncturedbicycle

ok thanks

helvella profile image
helvellaAdministrator

It is all very well asserting the levothyroxine is a poison. Maybe best look at kelp before making any decisions:

Case Report: Potential Arsenic Toxicosis Secondary to Herbal Kelp Supplement

ncbi.nlm.nih.gov/pmc/articl...

Angelic69 profile image
Angelic69 in reply tohelvella

I have

puncturedbicycle profile image
puncturedbicycle

Angelic69 your fears are coming through loud and clear here, and I think most of us can identify w some of the things you're saying, that there are a lot of unknown factors in being diagnosed and treated. Your body can't be a test subject and a control, you can only do one thing at a time and react to those experiences by continuing to do what works or changing what doesn't. It means we sometimes struggle to make what look like terribly important and/or intractable decisions about our health.

Something in your replies makes me think you may be subject to this uniquely hypo symptom (or I think of it as a unique hypo phenomenon) of feeling anxious and overwhelmed and overthinking everything. It's as though our hypo brains can only go in circles and find no resolution, as though the only comfort is retracing the same paths of anxiety rather than breaking out and trying something.

I attribute the fact that I was led down an alternative path for far too long to the weird combination of feeling helpless and anxious and unable to think nimbly about my choices, all from being hypo. I get it whenever my meds are wrong or interrupted. When I read about 'the Antarctic stare' I thought hmm, that was me before meds: en.wikipedia.org/wiki/Polar...

Maybe I'm on the wrong track and this isn't you at all. :-) I feel like I recognise something in your voice that seems typically hypo. I only mention it because you may find this distress will fade once you're being treated. But if you feel you don't want levo and you believe what this practitioner is telling you, feel free to try what they're suggesting. Give yourself a time limit and when that date comes reassess and decide where to go from there.

Angelic69 profile image
Angelic69 in reply topuncturedbicycle

sorry I don't really connect to your post.

puncturedbicycle profile image
puncturedbicycle in reply toAngelic69

I'm just responding to your statement 'It wasn't a question it was a fear that I was asking help with.' I can hear that you're fearful, and to me this situation is a familiar hypo dog whistle.

But in any case if it doesn't resonate w you I wish you the best of luck and good health.

Angelic69 profile image
Angelic69 in reply topuncturedbicycle

I'm sorry that health professionals have taken you for a ride and now you believe everyone will go for the same ride as you've been on but I'm early in my journey and still have faith. Thanks for your support. Not sure what you MEAN by hypo dog whistle but I'm sure like minded people will agree.

puncturedbicycle profile image
puncturedbicycle in reply toAngelic69

Maybe we got our wires crossed, I don't feel I've been taken for a ride, I chose to try something that was non-standard and because I remained unwell it was hard for me to change direction. You came here asking for opinions and my opinion has been formed by my experiences, which I shared w you, because it has helped me to read about other people's experiences here.

By hypo dog whistle I mean there are familiar hypo things we recognise in others, things people might not see if they haven't had the same experience.

I hope you don't mind me saying you seem to feel very defensive despite the support you've been offered here, so I do honestly hope you find what you're looking for, if not here then somewhere else.

The best of luck to you.

in reply toAngelic69

Angelic69 Just had a thought -you have a friend that's a pharmacist don't you? My Local pharmacist is very helpful AND knowledgeable. Why don't you see what your friend thinks about Levo and iodine. I'm sure she would be very helpful to you and calm your fears.

Angelic69 profile image
Angelic69

classy

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