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belford profile image
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I have stopped taking my thyroxin what effect will it have on me and my body I stopped it yesterday

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belford profile image
belford
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Heloise profile image
Heloise

If you have hashimoto's, you will start up with symptoms unless you feel that your thyroid is now working and producing your own hormone. That would be unusual, though. If you had symptoms when beginning treatment, those will probably return as the levo leaves your body in six or more weeks. Are you going to replace with anything else? Sometimes people feel good at first.

deb25426 profile image
deb25426

Why would you stop taking it??. From my own experience, if I don't take it for a couple days (for whatever reason) I wouldn't be able to function!!! If severely under active it can affect your life a lot.

belford profile image
belford in reply todeb25426

Thank you for your reply the reason I am not taking any of my medications except the morphin and the tramadol (both taken to help with the pain) is that as you are aware this government has cut back on carers telling the social services to get as many people as they can cut down on the hours they have carers I have seizures when I go to sleep and My doc has me on the maximum dose of medication he can give for seizures now I had carers during the night who would make sure that I did not choak whilst in a seizure now those carers have been stopped and as much as plead with the social services to give me them back so that I will feel safe at nights they refuse.

I really am scared some nights to go to sleep and when I get so tired I cannot keep awake I do not know if I will wake in the morning over the past few months I have lost two friends who have died during a seizure in there sleep the powers that be know I have seizures and it seems as if they do not care so I have let them know that I am refusing all but pain medication and if anything does happen to me then they will have to answer as to why they let this happen

Madvicky profile image
Madvicky in reply tobelford

Your circumstances are highly unusual & unacceptable, you can make a formal complaint & you can ask for an advocate, presumably you are over 60, Age connect offer a good service in some areas & there are other organisations. Do you have assisted technology (personal alarm systems) this is available via Social services. Also you could ask for a social worker to review your case. You could write to the director of social services in your area.

Madvicky profile image
Madvicky in reply toMadvicky

Also have to you asked your consultant for a supportive letter, if you don't have one currently ask to be rereferred

belford profile image
belford in reply toMadvicky

thanks for the info I had a review back in July at that review I was verbally bullied I have gone to the ombusman with that and 3 social workers have been moved to another area so bad was the abuse I had an advocate who said I had the ability still to argue with the social services I do not have a personal alarm system as my seizure do not give me any warning also it is very high pitched and as I wear hearing aids that alarm really is painful in my ears and it tends to knock the hearing aids out for a while I know this because I tried one. I have had a second review which is still going on that started at the beggining of August and is still going on and despite contacting the head of social services in Lincolnshire they did nothing the review is still going on and every time they ask me for something and it is given to the social services they ask for something else this as I said has been going on now from the beggining of August my family one of who left the social services as she was disgusted at what they are doing she also said it was totally out of order, we are absolutely certain they are doing this as one of the three social workers who was moved out of this area was a senior social worker with a lot of pull so I have to carry on and do what I am doing even if it means I do not survive I even called in my MP who asked a few questions but since she found out I have stopped taking my medication she does not want to be involved with the case at all now as you may well imagine i have no where else I can turn to for advice I see my kids and they sort of understand my reasoning but are heart broken at what could happen

Madvicky profile image
Madvicky in reply tobelford

I am so sorry about your circumstances. X

jlo211 profile image
jlo211

If you stop taking it permanently and don't take anything else, you will get really ill in a few months. There is a reason why we get free prescriptions!! You need to take your meds!

Redscorpian profile image
Redscorpian

Hi, I was diagnosed with Hashimoto's disease over 4 years ago and subsequently my thyroid was found to be 'dead' and producing no thyroxin at all. Since then I've been on 100ug (varied until settled) levothyroxin and (for personal reasons) stopped taking my daily dose of thyroxin about 8 weeks ago. My doctors have told me it will take about 12 weeks before it leaves my body completely and two weeks ago my blood tests returned with no issues. I have to say also that so far I'm not suffering any noticeable symptoms and feel okay. I'm seeing my doctor every two weeks and exercising regularly - I have to say I'm pretty normal and this against all previous beliefs and expectations. Maybe this won't last, maybe this will change very soon but so far I'm as well as I've ever been.

marram profile image
marram in reply toRedscorpian

Myxoedema which is the eventual result of low thyroid hormone levels is slow and insidious but untreated is eventually fatal. If your thyroid is dead you have to take replacement. If Levo does not suit you there are alternatives.

But be under no illusions, this is not a trivial matter. Babies born without a thyroid cannot survive very long, and are brain damaged. An adult with no thyroid becomes sluggish, mentally slow and can suffer strokes and heart attacks due to high cholesterol. A form of psychosis, nicknamed 'myxoedema madness' is well documented.

It takes time, but it will affect you, if,as they told you, your thyroid is effectively 'dead'. Do not mess with your long term health, it can be more difficult to correct than to prevent. If you have a problem with medication, then you ought to speak to a medical professional to sort out your problem.

Marie xxxx

RedApple profile image
RedAppleAdministrator in reply toRedscorpian

It seems a very small percentage of people do actually recover their own thyroid function after having a definite diagnosis and being on medication. It happened to a relative of mine. She was diagnosed and taking thyroxine for several years. She hasn't taken it now for eight years or more.

Long may it continue for you Redscorpian!

Redscorpian profile image
Redscorpian

Thanks and I'm aware of this - personal reasons, as mentioned. I eat healthily, exercise and take vitamins, minerals - especially vitamins C, D, Iron and Selenium. Some of this contradicts a few things I know but so far I'm fine and can't report any symptoms.

marram profile image
marram in reply toRedscorpian

The only way that you will be well long term is if they were completely wrong in the diagnosis.

If you still have some functioning thyroid it is possible to maximise what you have with a healthy regime, and there is strong evidence that selenium can help to reduce the antibodies. You need to make sure that you have regular tests including T4 and T3 levels as well as the TSH.

I wish you well.

Redscorpian profile image
Redscorpian in reply tomarram

I appreciate the long term effects but the diagnosis was/is correct and borne out with the subsequent tests to stabilise my levothyroxin dosage. Thanks for your comments.

belford profile image
belford in reply tomarram

thank you for your comments I do not have a thyroid as it was deseased and they destroyed it with radiation sometimes it feels as if I still have it which my doctor says is impossible as thyroids do not regrow I did not think they did

marram profile image
marram in reply tobelford

They can regrow, it is most common in Graves' sufferers, it happened to me, I had a sub total thyroidectomy at age 18. They left a little bit and it functioned fine without medication, but then about 16 years later it grew again and I became overactive again, so had all of the rest removed. Since then no regrowth, I think it mainly happens if they leave a tiny bit in and the patients has Graves'.

belford profile image
belford in reply tomarram

now that is very interesting all I know is that they gave me radiation to destroy mine about 10 years ago i do not know if mine was totally destroyed but the hospital left me for 4 months after that radiation treatment with no treatment and I became really ill and still they did not tell me if all my thyroid was destroyed

belford profile image
belford in reply tomarram

my eye specialist says I have graves desease my eye sight is effected by having no thyroid and it has for some strange reason made me have a divergent squint that is according to my eye surgeon hey I wonder if any of my thyroid was left in

marram profile image
marram in reply tobelford

Even with no thyroid whatsoever, of you have the Graves' antibodies,,that can attack the eyes, since the disease is not actually a thyroid disorder, but an autoimmune disease.

I had my thyroid removed at age 37 but had a fresh attack of Graves' eye disease at about age 68!

Did your eye specialist Recommend that you take Selenium? Apparently it can prevent the eyes getting any worse. It reduces the antibodies, it worked for me.

belford profile image
belford in reply tomarram

NO HE DIDN'T MENTION ABOUT SELENIUM WHERE CAN I GET THAT FROM? I DO KNOW THAT AT TIMES THE DOUBLE VISION IS REAL BAD SOMETIMES MY EYES ARE REAL DRY OTHER TIMES ITS AS IF I AM CRYING MY EYES OUT THEY ARE RUNNING WITH WATER WHEN HE SAID I HAVE GRAVES DISEASE HE DID NOT RECOMMEND ANYTHING EXCEPT THOSE WATER DROPS DIDN'T HELP MUCH THOUGH JUST WISHED SOMEONE WOULD HAVE EXPLAINED TO ME ABOUT GRAVES DISEASE

marram profile image
marram in reply tobelford

Yes, it is unfortunate that it is a fairly new idea, I really was blessed to have an eye specialist who was really on the ball with the latest research.

He told me that with Graves' it is essential to have really good levels of Selenium, just OK is not sufficient.

I am taking Selenium 200 mcg which are exactly the same as you can buy from Amazon or Nature's Best. It is a supplement and not expensive if you wish to try them.

You could also ask for some better eye drops if the ones you are given are not doing the trick, I had to do just that, and the gave me 'Hylo-Care' which seem to suit me much better. I hardly have to use them now as my eyes have improved.

Sorry to have to ask, but do you smoke? That will always make the eye attacks worse. If your eyes are getting worse, you must keep nagging them, because the double vision is very distressing and is one of the most disturbing manifestations of Graves'.

Some old fashioned doctors have no idea the damage that can be done to the eyes, they think when the thyroid gland is gone, the Graves' is cured! If only....

There is also a school of thought that going gluten free can be as helpful with Graves' at reducing antibodies as it is with Hashimoto's. I have not tried that.

The good news is that if you can protect your eyes while the attack is in progress, it will burn itself out in a year or two in most cases.

This was my second attack and I am convinced that, just as the original Graves' was kicked off in my teens by the TB vaccination at age 13 - I was first diagnosed six months after the vaccination - the second attack a couple of years ago was kicked off by the 'flu vaccination. I was vaccinated in the October and the optician noticed changes in my eyes in the following May, when my right eye suddenly deteriorated five times more than my left after being stable for five years.

I do hope that I have been able to help you to get more help for your eyes.

xxxx.

belford profile image
belford in reply tomarram

thanks for that info I went and got some selenium when I went to the hospital today I was only going to take 100ml but will now take 200 same as yourself as my eyes are in a bad stage with my graves my eye specialist never told me anything at all about graves he told me I have it told me I had to learn to live with it and left it at that saying he would see me in June of this year he did not I phoned his secretary and hit the roof with her she said there was a backlog from last Mrch to see to I told her Mine was from the begining of February 2 days after that I got an appointment but I think I am going to havea few words with the specialist and tell him he wants to help people not cast then off anyway thanks again for the info

LAHs profile image
LAHs in reply tobelford

Brazil nuts contain lots of selenium(Se). I eat two or three per day and it seems to keep my Se level up. Don't eat too many, too much Se is toxic.

You need Se as catalyst to cause T4 to get converted to T3 the active hormone and the one which gives you energy.

Cannylass profile image
Cannylass in reply toRedscorpian

If you talk to your GP and ask to see someone on the social services team they may have a local scheme for 'exceptional cases' which would pay for your carer to return. If you can't afford your rent due to having to pay for a carer you might get heard more? The council like their tenants to pay rent. They might come up with a scheme to help you?

There are people who were initially Occupational Therapists whose jobs were dissolved by government so the councils had to find them other things to do and they have schemes within local councils where they can come out and assess you and your needs and see if they can help you.

I know you've stopped taking your meds for personal reasons as you say but just be careful as you don't want to end up worse than you are already.

Kind regards,

Cannylass x

belford profile image
belford in reply toCannylass

THANKS FOR ALL THAT INFO I AM DUE TO SEE MY DOC LATER TODAY I ACTUALLY OWN MY HOME WITH MY SON BUT HE LIVES AWAY BUT I GET TWO HOURS A DAY CARE INSTEAD OF THE 24 I WAS GETTING WE HAVE TRIED EVERYTHING TO GET THE SOCIAL SERVICES TO COME UP WITH SOMETHING THEY JUST WONT THEY HAVENT EVEN BEEN IN CONTACT WITH ME SINCE EARLY LAST WEEK I PHONED THEM THIS PAST MONDAY TO TELL THEM I HAVE STOPPED TAKING ALL BUT MY PAINKILLERS THEY HAVE NOT CONTACTED ME SINCE THE DISTRICT NURSE PHONED LAST THURSDAY BUT DID NOT LEAVE A MESSAGE SHE PHONED AGAIN ON MONDAY TO LET ME KNOW SHE HAD PHONE AND WAS QUITE UPPERTY SHE IS SUPPOSED TO DO AN ASSESSMENT WITH THE SOCIAL SERVICES BUT AGAIN SHE ALSO HAS NOT BOTHERED TO CONTACT ME AGAIN GUESS THEY ARE ALL SAYING SOD YOU MATE WE WANT NOTHING TO DO WITH YOU I TRIED TO SPEAK TO MY SOCIAL WORKER TODAY SHE REFUSED TO TAKE MY PHONE CALL I AM NOW ALMOST CERTAIN THAT THIS IS A RESULT OF MY COMPLAINING TO THE OMBUDSMAN ABOUT THE THREE SOCIAL WORKERS WHO BULLIED ME VERBALLY AT THE ASSESSMENT IN JULY AND WERE MOVED FROM MY AREA ONE OF THEM WAS THE SENIOR SOCIAL WORKER .

THE ASSESSMENT THOSE THREE WERE AT ONE OF THE THINGS THE SENIOR SOCIAL WORKER SAID WAS I WAS NOT DEAF AS I CAN TALK PROPERLY SHE EVEN PUT THAT IN WRITING I TRIED TO TELL HER THAT I WAS BORN DEAF SHE WOULD NOT LISTEN I SHOWED HER A LETTER FROM MY CONSULTANT HE WROTE DOWN EXACTLY WHAT HAS HAPPENED TO ME NOW THIS SOCIAL WORKER HAPPENS TO HAVE AN SRN SO HER COLLEGUES STATE SHE SAID IT DID NOT PROVE WHAT WAS WRONG WITH ME MY DOC WENT MAD AT THAT ONE THE THIRD ONE WAS SHE SAID THERE WAS NOT A THING WRONG WITH MY FINGERS AND I CAN STRAIGHTEN THEM NOW I HAD AN BAD ACCIDENT WHEN I WAS 4 OR 5 YEARS OLD AND MY RIGHT HAND FINGERS THREE ARE PERMANENTLY BENT AND ALL THIS SHE PUT IN WRITING THE ABUSE GOT A WHOLE LOT WORSE AND ALL THAT HAPPENED TO THE SOCIAL WORKERS WAS THEY WERE MOVED TO ANOTHER AREA HOW LONG WILL IT BE BEFORE SHE GOES AFTER ANOTHER PERSON AND WHY DID THE OTHER TWO PEOPLE IN THAT ROOM LET HER CARRY ON SAYING AND DOING WHAT SHE DID NONE OF THESE QUESTIONS HAVE BEEN ANSWERED THE SENIOR SOCIAL WORKER CONCERNED STILL HAS A LOT OF PULL SO I HAVE BEEN TOLD AND CAN AND DOES SAY WHAT THEY HAVE TO DO REGARDING ME WHERE I WAS TOLD SHE MUST NOT DO SO BUT PROVING IT AND BEING TOLD WHAT IS HAPPENING AND PROVING I HAVE BEEN TOLD IS TOTALLY IMPOSSIBLE

marram profile image
marram in reply tobelford

Hi, Belford, firstly, could you please take off the capital lock, unless you have to use it to see what you are writing? Some people feel it makes it look as if you are shouting at them, it is just a convention with online communication not to use capitals.

I feel sorry for your situation, but all the same I am not sure, it may be counter productive, and alienate the people you most need on your side.

I am my husband's carer and I have just received a letter saying we are having all support withdrawn because the rules have been changed! Only new cases will have an automatic assessment for a personal budget. I am so disgusted with them that I just feel sick thinking about it. We get no help whatsoever from anywhere, and I have just had open heart surgery but am having to do things they said I should not do because we have no help. Just another example of this disgusting government vilifying the sick, and most people have no idea these things are happening.

I really do feel for you. Xxx

belford profile image
belford in reply tomarram

Sorry about the capital letters Id written a few emails and as usual my eye sight started playing up I have trouble with my eye sight due to having no thyroid my specialist says

I had one of those letters you have had I have gone from 24 hour care down to 2 hours per day some days it gets real bad and today it got worse as I went for me heart check and they told me my cholesterol is off the scale and has been for a couple of weeks and the diabetic reading is also very very high this was like it prior to my coming off the thyroxin as the blood test was done a couple of weeks ago now the heart specialist has put me on a high dose of beta blockers and another tablet to stop my blood being so sticky and some extra statins making 60 mls a day they have asked me to go back onto the warfarin to try to stop a large heart attack and have given me strict instructions what to do if the chest pain gets worse and does not ease with my spray I was winning blast it. My MP phoned me when I got back from the hosi this afternoon she said she wanted to set up a meeting in my home and was going to get her private secretary to phone me to arrange a date I asked her to tell me over the phone what she had done for me she said she couldn't tell me I said to her she has done sod all to help me and if she had she would tell me unless she wanted the glory and praise by coming to my home bet you gal that there would have been press around anyway I started to have chest pains just before I picked the phone up and they were getting worse so I put the phone down on her so I could take my spray I came on line this evening to find an email from her about my putting the phone down on her so I told her she accuses before she learnt why I did so then told her why I did want to bet she does not apologise Tory beggar all over hey did you know that the people who fought this lot about the ILF are now going to the UN and are asking the UN to enforce their laws as this government has in its wisdom told the people in the UK the UN laws do not effect the people of the UK want to bet Mr Cameron so the top and tail of them cutting off my carers is that my heart condition has deteriated by my trying to manage

good luck to you and you stand your ground and do not for goodness sake when you have your assessment do things your not supposed to do and try to manage as they will say you did it at the assessment so you can now manage doing thing you thought you could not the assessment is done by the way in our area over a period of weeks I don't know if yours will but when I thought they had finished mine they then made a further appointment with me to add to it this went on for 4 weeks so please be careful and if you cannot manage to do things do not attempt too try

Sue

Taminaone profile image
Taminaone

That's a big thing to do!

I am quite new to delving into being hypothyroid. I am reading a good book by Suzy Cohen ( a natural pharmacist) available at Amazon called Thyroid Healthy. it is easy to read as she wants us to be able to discuss our complaint with our doctors sensibly. she was hypothyroid herself and looked into why and how she felt so ill. I have got the sense from her book that if the thyroxine is not reaching EVERY cell in your body because of low iodine, selenium, magnesium, Vit D and Vit Bs, Cortisol, Iron, Ferritin and what she calls "thyroid muggers" - medications one is also taking that rob the cells of the thyroxine we are trying to replace along with other muggers like coffee, the thyroxine is not being converted and entering into our cells so useless to take. But I would have to have a whole more confidence in her thoughts before I would stop my Levo.

Good luck, however.

greygoose profile image
greygoose in reply toTaminaone

Suzy Cohen is right in what she says. BUT that's not the whole story, is it. Saying that the thyroxine is not 'converted and it's therefore useless taking it' is not the same as saying 'Don't bother to take it'. What she is saying is that you need to correct these nutritional deficiencies - which is what we're always saying here - so that the thryoxine does work efficiently and you get well. Big, big difference.

You need thyroid hormone in every cell in your body, and without it, these cells will die and you will slowly decline. And that is not as Victorian and glamourous as it sounds. You won't just be lying around on a sofa looking pale, you will be curled up in bed in terrible pain with your hair falling out, and your teeth rotting, and probably very, very constipated. Oh, and you will put on weight like there's no tomorrow. Your kidneys will give up, and your failing liver will make you turn yellow. Your brain will stop working and you won't be able to understand what people are saying to you...

I could go on, but I won't. The point is, it doesn't matter how healthily you eat, you cannot replace hormones with vitamins and minerals, you can only make the hormones more effective. And exercise will just use up your hormones faster. And, remember, when your thyroid hormones are low, all the others will gradually become unbalanced, too.

So, the question remains, why would anyone want to stop taking their thyroid hormones? Unless they were suicidal, of course. But I can think of a lot quicker and easier ways of ending it all. Keep taking the tablets. :)

Taminaone profile image
Taminaone in reply togreygoose

absolutely!

Ellie-Louise profile image
Ellie-Louise in reply toTaminaone

You mentioned coffee as being a mugger. Is decaf coffee alright to drink?

I have one mug of decaf every day at around midday. (No pun intended) :)

Taminaone profile image
Taminaone in reply toEllie-Louise

Hello Ellie-Louise, there is a book by same lady called Thyroid Muggers available via Amazon via Thyroid UK (so it gets a bit of commission) advising on the 'muggers' but in the book I have she does give a list. I am just learning from the book I recommended earlier so cannot advise on decaf. I can't remember her exact words but I got the impression that she meant those who drink cup after cup of coffee. The odd cup I seemed to understand was ok. When I am able to continue reading when the grandkids go back to school I will quote her words if you would like. I think other friends on this site will know mre about coffee.

Ellie-Louise profile image
Ellie-Louise in reply toTaminaone

Thanks Taminaone, I think you are probably right. Cup upon cup can't be doing anyone any good I would think.

Beani2 profile image
Beani2

Please don't stop your Thyroxin as you will feel very ill, i know as i stopped mine this yearand my whole body started to slow down so much i could not function. My heart and pulse slowed down so much it scared me to go to sleep incase i did not wake up.Why have you stopped taken them?

ColetteBloom profile image
ColetteBloom

Dear Belford

I wish you luck , I have done the same: Have you heard of the 'leaky gut' connection, with autoimmune diseases: I tried levothyroxine and it has not made me feel that much better, produces lethargy and heaviness in my limbs, however people respond differently: There is a very significant connection between Hashimoto's thyroiditis and leaky gut , and leaky gut causes autoimmune deficiency and related diseases arsing out of compromised immune system: I found Colostrum has a great tendency to repair leaky gut and , if you repair this the your immune system stops attacking thyroid function. Things you can do to help support your route back to health, there are many.

highonfat.com/home/colostru...

I am supposed to be (I have a big resistance to pharmaceuticals encouraging dependence; and not treating root cause, and to this multi billion dollar Industry itself) on synthetic thyroxin for Hypothyroidism? Hashimoto's Thyroiditis: Levothyroxine 25mg. Because my TSH ( Thyroid Stimulating Hormone) is rocketing. Meaning it is working hard to coax the thyroid into producing normal levels of thyroxin, as you know. Grave's disease is also an autoimmune problem producing high levels of thyroxin.

So I have been researching the 'leaky gut' connection causing autoimmune response: holtorfmed.com/leaky-gut-li...; and feel there is a connection there due to many prescription of antibiotics I had, years ago, and amongst other contributors toward leaky gut. I found that there are 3 supplements that give strong support and help repair porosity of leaky gut: 'Colostrum' which is also said to be tested with good results in The Royal Hospital; L Glutamine, and Quercitin. icnr.org/articles/lgs.html

( Please copy and paste links into google if they are not active here, as you know it will take you to the site and info you require: Highlight link address, then to save click Ctrl and 'c' then to paste in google click 'Ctrl' and 'v'; Thank you)

You will be aware of the debates around iodine. Our water with its treated fluoride and chlorine levels displace the iodine levels in our bodies: Iodine, chlorine and fluoride are referred to as halogens, and are atomically interchangeable, meaning iodine will be absorbed by what it is in our water: I filter my water, and have been doing for many years.

Natural routes: naturalendocrinesolutions.com/

Endocrine system and adrenals can be deeply affected and put out of balance by caffeine. I don't take caffeine, for over a year now, and feel so much better off it too! Wheat and gluten free diet has been adopted (for over a year). Vitamin B12, selenium, zinc and Kelp for mineral replacement, and Fulvic Acid Restore helps too. I have now adopted a high level of raw food intake: fresh fruit and vegetables, which can induce many positive changes, taking in live enzymes. I don't know it any of this is of use to you? I hope so. Thank you again for sharing wishing you all rapid healing and recovery.

Apologies I have written and included quite a lot here but as you go along you will find it is a very involved subject:

Here is what is said about colostrum:

"Colostrum aka "pre-milk" is produced by all mammals (including humans) during late pregnancy for their newborn to drink in the first few days of life, just before the breast milk comes in. The purpose of colostrum is to act as a form of passive immunity and provide a hefty dose of anti-bodies, such as IgA, IgG and IgM, which help to build the newborn's immunity. It also contains antimicrobials and several growth factors.

Growth factors for what, you say? Glad you asked.

You see, when a newborn comes into this world, he/she has holes in their gut to allow for the colostrum and the large proteins (anti-bodies) to easily pass through the intestinal wall and enter the blood stream to make it's way around the body. So while essentially this makes the newborn's gut "leaky", it's a physiological (completely normal) process unlike the pathological leaky gut that I, as well as many others, have suffered from.

Growth factors (such as epithelial and epidermal) stimulate the gut to develop and essentially patch up the holes within the first 2-3 days of birth. Really think about how incredible that process is. Then consider what a colostrum supplement could do for your damaged gut.

The uses of colostrum for leaky gut and various autoimmune diseases are becoming more and more popular again as people are beginning to realize that the foods we put in our body directly affect it's ability to heal itself. The links I've provided below, and especially the ones located in my original post on this topic {found here}, provide some remarkable information that I highly recommend you read through.

Here is a piece from an article (found here) that sums up the link between leaky gut and disease very well:

"Leaky gut syndrome is directly associated with many autoimmune diseases, including allergies, alopecia areata, Alzheimer's disease, autism, chronic fatigue syndrome, Crohn's disease, depression, diabetes, fibromyalgia, food allergies and sensitivities, heart disease, HIV/AIDS, irritable bowel syndrome, inflammatory bowel disease, multiple sclerosis, polymyalgia rheumatica, Raynaud's disease, rheumatoid arthritis, scleroderma, Sjögren's syndrome, ulcerative colitis, and vasculitis. (17-27) The connection between leaky gut syndrome and these autoimmune conditions is the antibodies created by the body in response to the toxic substances and undigested fats and proteins that leak into the bloodstream and attach themselves to various tissues throughout the body, create an allergic response, trigger the destruction of tissues and organs, and create inflammation. As toxicity increases, autoantibodies are created, and the destruction and inflammation become chronic. There is a tipping point at which the body cannot recover from chronic inflammation, and pathological (disease) diagnosis follows."

Diabetes, depression, cancer, asthma, autoimmune disease, skin disorders, heart disease, inflammation, and even athletic performance are among the many reasons people are supplementing with colostrum. The list goes on and I personally have experienced it heal my gut, reverse nearly all my food allergies/intolerances (still healing-- but I'm about 95% there) as well as improve the quality of my hair, skin and nails.

Warm regards

Colette

Heloise profile image
Heloise in reply toColetteBloom

Very nice points you made and I have followed healing methods for a very long time. I do believe the body can be healed of chronic conditions (as long as they stay away from pharmaceuticals). One technique a doctor always recommended was something he called skilled relaxation. This is important to release the muscle tension often involved which in turn increases blood flow to the gut. He also advised that leaky gut was at the base of most chronic illness.

ColetteBloom profile image
ColetteBloom in reply toHeloise

Dear Heloise

Thank you for your supportive and interested response.

I am so glad you are onto route causes as opposed to treating just the symptoms of disorders. It is more self empowering, and it is crucial not to feel hopeless in all these stages of challenged health.

I am in 100% agreement about pharmaceuticals. I do not wish to go down the route of drug dependency , which is just another form of slow degeneration to health if it misapplied, only if it is absolutely necessary to treat others this way does it begin to support healing taking diet and lifestyle changes that are needed into account etc. And working holistically. There is growing controversy around being prescribed thyroxin in any case, before more thorough test have been made by endocrinologist.

Wishing you great healing and rapid recovery.

Love and Prayers

God bless

Colette

Heloise profile image
Heloise in reply toColetteBloom

Thank you, Colette and the same to you. We have to look more holistically at any problem we encounter and give our bodies all it needs to heal. Very difficult in this toxic world we live in however so "proceed with caution". I'm sure many people do not do as well on levothyroxine as the natural desiccated hormone but it's a struggle which takes a lot of effort and so difficult when you are ill. I hope we can support each other to achieve what we need.

ColetteBloom profile image
ColetteBloom in reply toHeloise

Dear Heloise

Thank you for response, much appreciated. I am doing very well on the colostrum, and would be glad to keep you posted on progress and any more crucial info related to our condition.

Agree there are so many attacks on our health: Diet, food contaminations, EMF fields, pollution, mercury fillings, not omitting stress and psychological needs, and fulfilment of a sense off purpose, i.e. whatever factors arise etc long list!

All my support.

Love and prayers.

Colette

Heloise profile image
Heloise in reply toColetteBloom

I think it would be wonderful to have testimonials, etc. I've been here several years now and people may not realize that some are actually improving due to something that might help others. I think I had heard of earthing blankets here first. It's good to hear what others have found interesting or helpful and really enjoy to know if they are making actual progress so I hope you will keep us posted.

helvella profile image
helvellaAdministrator in reply toHeloise

There are some success stories on the main Thyroid UK site. The way this HU forum works doesn't really work for that sort of thing - things fly by so fast!

thyroiduk.org.uk/tuk/get_in...

Heloise profile image
Heloise in reply tohelvella

Those were interesting, Rod. It's good to know that people have regained some health. The first two were fortunate to end up with decent GP's but those are not easy to find, are they?

ColetteBloom profile image
ColetteBloom in reply toHeloise

Good Morning Heloise,

Thank you for response. I had not heard of the 'earthing' blanket Thank you so much for that wonderful bit of information. I have heard about the effects of EMF's on lowering T4 and T3 .The blanket is, worth trying !

Meanwhile, I shut off all electric power at the wall sockets at night, in my attempts to minimise exposure, take bed way from wall where there may be internal wiring, but we have no control over external conductors, or if we are exposed nearby power lines etc? Only alternative is to move, if it at dangerous levels. I don't think we are in such a high EMF zone? No one else has any overt or related sickness. Have not had a house survey.

Iodine, is a support for radioactive exposure etc

Yes, I too think so, it is such a positive forum here, sharing info and comparing notes. And could make a critical positive difference to health, and is self empowering.

"United we stand divided we fall"

Wishing you a joyful weekend and rapid healing.

God bless and Love and prayers

Colette

Heloise profile image
Heloise in reply toColetteBloom

Thank you, Colette. You're lovely.

This is a wonderful forum and I hope everyone suffering out there can find it.

We had a discussion about grounding on another forum and they took it very seriously. You can actually do the wiring yourself using only the grounding plug. And, besides that, you can find a paint that will block EMFs.

Of course, the best way is to lie directly on the ground and let the earth's magnetic pull do it for you. But then, you may be eligible for something to walk on you, teehee. I have not gone that far but they also make mats to use by your chair but I not sure they are effective. Dr. Mercola's site is a good place to find all sorts of health information by the people who are in the field.

Be well!

ColetteBloom profile image
ColetteBloom in reply toHeloise

Good afternoon Dear Heloise

Thank for your kind words and support. I neglected to mention I am also using a supplement that offers great support to all ailments: Cannabis oil. I got mine from Aamazon: CBDLife; Oil in bottle. It is a very potent health support and is used very effectively as a treatment for cancer: leafly.com/news/cannabis-10...

Thank you so much for your input.

Wishing you a joyful weekend

Love and light

Colette

Heloise profile image
Heloise in reply toColetteBloom

And thanks to you as well. I'm still working on adrenals and hopefully that will get me to the top.

positiveperson profile image
positiveperson in reply toColetteBloom

I was interested in what you had to say, particularly regarding colostrum and leaky gut. I am looking to improve my health after coming off meds about 18 months ago. Will look into the information you gave. You say you are 95% there. That's fantastic. Would love to know more.

positiveperson profile image
positiveperson

I see from your profile that you have no thyroid and suffer from other health problems too.

I am one of those who came off medication, and feel no worse for it, but I did it under the supervision of a sympathetic endocrinologist. I would not have done it, without being monitored. Why did I come off the 50mg after 20 years one may ask? Well I always questioned the medication, because I felt it was that making me feel just awful. I had tried to come off once before and gradually reduced the dose. Felt great at first, but then worse than I had before. My last TSH reading was 4.2 and I am to have another blood test soon, so hopefully it will throw some light on how I am doing. Its now about 18 months without medication, and it was stopped abruptly, so maybe it shocked my thyroid into working better.

I am pleased that I came off, I still have symptoms, and struggle, but everyone is different and I am hoping to find a way of improving my health still further.

I don't understand what exactly happens if you have no thyroid at all.

There are some inspiring people contributing to this site. I am going to look into some of the things mentioned.

belford profile image
belford in reply topositiveperson

Hi There nice to hear that you are doing ok

My coming off all my medications except for Morphin and tramadol both for pain is being done as a protest against the government making us disabled suffer

I also have seizures every night whilst I sleep and I am on the maximum dose of seizure medication a day I had carers who would make sure I do not choak whilst in a seizure now I hardly sleep and always when I do sleep have a seizure the reason I know this as I feel absolutly drunk for few hours during the day when I've had one, now I am in effect scared to go to sleep in case I have a seizure as I now no longer have a carer to make sure I do not choak whilst in one Just over the past 6 months I have lost two of my friends who both choked in seizures whilst they slept. I do not really want to do this but now I have absolutly no choice it is the only way I have left to fight the socail services and the government

ColetteBloom profile image
ColetteBloom in reply tobelford

Dear Belford

I am really sorry to hear about your current condition. It sounds hard to deal with. My heart goes out and I wish you comfort in your hours of need. And jolly good luck with all the administrative affairs to gain support you need.

I hear that fasting can also initiate healing: ( They have done this with epilepsy too: sciencedaily.com/releases/2...

But here are some other sites on this subject:perfecthealthdiet.com/2010/.... And in the case of fasting you may want to get GP support. There is also window fasting which is kinder.

And other info here I have posted regarding Hashimoto's and leaky gut connection, just in case you have not come across my post on this subject: I tried levothyroxine and it has not made me feel that much better, produces lethargy and heaviness in my limbs, however people respond differently: There is a very significant connection between Hashimoto's thyroiditis and leaky gut , and leaky gut causes autoimmune deficiency and related diseases arsing out of compromised immune system: I found Colostrum has a great tendency to repair leaky gut and , if you repair this the your immune system stops attacking thyroid function. Things you can do to help support your route back to health, there are many.

highonfat.com/home/colostru...

I am supposed to be (I have a big resistance to pharmaceuticals encouraging dependence; and not treating root cause, and to this multi billion dollar Industry itself) on synthetic thyroxin for Hypothyroidism? Hashimoto's Thyroiditis: Levothyroxine 25mg. Because my TSH ( Thyroid Stimulating Hormone) is rocketing. Meaning it is working hard to coax the thyroid into producing normal levels of thyroxin, as you know. Grave's disease is also an autoimmune problem producing high levels of thyroxin.

So I have been researching the 'leaky gut' connection causing autoimmune response: holtorfmed.com/leaky-gut-li...; and feel there is a connection there due to many prescription of antibiotics I had, years ago, and amongst other contributors toward leaky gut. I found that there are 3 supplements that give strong support and help repair porosity of leaky gut: 'Colostrum' which is also said to be tested with good results in The Royal Hospital; L Glutamine, and Quercitin. icnr.org/articles/lgs.html

( Please copy and paste links into google if they are not active here, as you know it will take you to the site and info you require: Highlight link address, then to save click Ctrl and 'c' then to paste in google click 'Ctrl' and 'v'; Thank you)

You will be aware of the debates around iodine. Our water with its treated fluoride and chlorine levels displace the iodine levels in our bodies: Iodine, chlorine and fluoride are referred to as halogens, and are atomically interchangeable, meaning iodine will be absorbed by what it is in our water: I filter my water, and have been doing for many years.

Natural routes: naturalendocrinesolutions.com/

Endocrine system and adrenals can be deeply affected and put out of balance by caffeine. I don't take caffeine, for over a year now, and feel so much better off it too! Wheat and gluten free diet has been adopted (for over a year). Vitamin B12, selenium, zinc and Kelp for mineral replacement, and Fulvic Acid Restore helps too. I have now adopted a high level of raw food intake: fresh fruit and vegetables, which can induce many positive changes, taking in live enzymes. I don't know it any of this is of use to you? I hope so. Thank you again for sharing wishing you all rapid healing and recovery.

Apologies I have written and included quite a lot here but as you go along you will find it is a very involved subject:

Here is what is said about colostrum:

"Colostrum aka "pre-milk" is produced by all mammals (including humans) during late pregnancy for their newborn to drink in the first few days of life, just before the breast milk comes in. The purpose of colostrum is to act as a form of passive immunity and provide a hefty dose of anti-bodies, such as IgA, IgG and IgM, which help to build the newborn's immunity. It also contains antimicrobials and several growth factors.

Growth factors for what, you say? Glad you asked.

You see, when a newborn comes into this world, he/she has holes in their gut to allow for the colostrum and the large proteins (anti-bodies) to easily pass through the intestinal wall and enter the blood stream to make it's way around the body. So while essentially this makes the newborn's gut "leaky", it's a physiological (completely normal) process unlike the pathological leaky gut that I, as well as many others, have suffered from.

Growth factors (such as epithelial and epidermal) stimulate the gut to develop and essentially patch up the holes within the first 2-3 days of birth. Really think about how incredible that process is. Then consider what a colostrum supplement could do for your damaged gut.

The uses of colostrum for leaky gut and various autoimmune diseases are becoming more and more popular again as people are beginning to realize that the foods we put in our body directly affect it's ability to heal itself. The links I've provided below, and especially the ones located in my original post on this topic {found here}, provide some remarkable information that I highly recommend you read through.

Here is a piece from an article (found here) that sums up the link between leaky gut and disease very well:

"Leaky gut syndrome is directly associated with many autoimmune diseases, including allergies, alopecia areata, Alzheimer's disease, autism, chronic fatigue syndrome, Crohn's disease, depression, diabetes, fibromyalgia, food allergies and sensitivities, heart disease, HIV/AIDS, irritable bowel syndrome, inflammatory bowel disease, multiple sclerosis, polymyalgia rheumatica, Raynaud's disease, rheumatoid arthritis, scleroderma, Sjögren's syndrome, ulcerative colitis, and vasculitis. (17-27) The connection between leaky gut syndrome and these autoimmune conditions is the antibodies created by the body in response to the toxic substances and undigested fats and proteins that leak into the bloodstream and attach themselves to various tissues throughout the body, create an allergic response, trigger the destruction of tissues and organs, and create inflammation. As toxicity increases, autoantibodies are created, and the destruction and inflammation become chronic. There is a tipping point at which the body cannot recover from chronic inflammation, and pathological (disease) diagnosis follows."

Diabetes, depression, cancer, asthma, autoimmune disease, skin disorders, heart disease, inflammation, and even athletic performance are among the many reasons people are supplementing with colostrum. The list goes on and I personally have experienced it heal my gut, reverse nearly all my food allergies/intolerances (still healing-- but I'm about 95% there) as well as improve the quality of my hair, skin and nails.

Warm regards

Colette

ColetteBloom profile image
ColetteBloom in reply tobelford

Dear Belford

I neglected to mention, a supplement that helps with seizures and epilepsy: Cannabis oil: leafly.com/news/cannabis-10...

I got mine from Amazon@ CBDLife. 1000mg oil. Most potent.

I do window fasting, wch is much kinder. Eating between 11a.m and 7 p.m . It gives the body 16 hours rest.

Thinking of you. Wishing you comfort and healing.

Love and prayers

Colette

ColetteBloom profile image
ColetteBloom in reply topositiveperson

Thank you for sharing,

I will keep you posted of my progress on colostrum. I will be having another blood test soon.

Wishing you rapid healing and a joyful weekend.

God bless

Love and prayers

Colette

Barrister profile image
Barrister

I stopped my medication because I wasn't sure whether it was that or something else that was making my skin itch badly. Within 4 weeks my TSH had risen to 29.96 and FT4 had fallen to 4.6. I had also regained the small amount of weight that I had managed to lose. I'm now taking T3, lost the regained weight but still feeling extremely tired. Clemmie

ColetteBloom profile image
ColetteBloom in reply toBarrister

Dear Barrister

I am also no taking my medication. There is so much controversy around my prescribed levothyroxine in any case , we shoul be thoroughly examined by an endocrinologist. Looking at T4 and T3 conversion etc This is my usual post with what I have discovered for self support: I tried levothyroxine and it has not made me feel that much better, produces lethargy and heaviness in my limbs, however people respond differently: There is a very significant connection between Hashimoto's thyroiditis and leaky gut , and leaky gut causes autoimmune deficiency and related diseases arsing out of compromised immune system: I found Colostrum has a great tendency to repair leaky gut and , if you repair this the your immune system stops attacking thyroid function. Things you can do to help support your route back to health, there are many.

highonfat.com/home/colostru...

I am supposed to be (I have a big resistance to pharmaceuticals encouraging dependence; and not treating root cause, and to this multi billion dollar Industry itself) on synthetic thyroxin for Hypothyroidism? Hashimoto's Thyroiditis: Levothyroxine 25mg. Because my TSH ( Thyroid Stimulating Hormone) is rocketing. Meaning it is working hard to coax the thyroid into producing normal levels of thyroxin, as you know. Grave's disease is also an autoimmune problem producing high levels of thyroxin.

So I have been researching the 'leaky gut' connection causing autoimmune response: holtorfmed.com/leaky-gut-li...; and feel there is a connection there due to many prescription of antibiotics I had, years ago, and amongst other contributors toward leaky gut. I found that there are 3 supplements that give strong support and help repair porosity of leaky gut: 'Colostrum' which is also said to be tested with good results in The Royal Hospital; L Glutamine, and Quercitin. icnr.org/articles/lgs.html

( Please copy and paste links into google if they are not active here, as you know it will take you to the site and info you require: Highlight link address, then to save click Ctrl and 'c' then to paste in google click 'Ctrl' and 'v'; Thank you)

You will be aware of the debates around iodine. Our water with its treated fluoride and chlorine levels displace the iodine levels in our bodies: Iodine, chlorine and fluoride are referred to as halogens, and are atomically interchangeable, meaning iodine will be absorbed by what it is in our water: I filter my water, and have been doing for many years.

Natural routes: naturalendocrinesolutions.com/

Endocrine system and adrenals can be deeply affected and put out of balance by caffeine. I don't take caffeine, for over a year now, and feel so much better off it too! Wheat and gluten free diet has been adopted (for over a year). Vitamin B12, selenium, zinc and Kelp for mineral replacement, and Fulvic Acid Restore helps too. I have now adopted a high level of raw food intake: fresh fruit and vegetables, which can induce many positive changes, taking in live enzymes. I don't know it any of this is of use to you? I hope so. Thank you again for sharing wishing you all rapid healing and recovery.

Apologies I have written and included quite a lot here but as you go along you will find it is a very involved subject:

Here is what is said about colostrum:

"Colostrum aka "pre-milk" is produced by all mammals (including humans) during late pregnancy for their newborn to drink in the first few days of life, just before the breast milk comes in. The purpose of colostrum is to act as a form of passive immunity and provide a hefty dose of anti-bodies, such as IgA, IgG and IgM, which help to build the newborn's immunity. It also contains antimicrobials and several growth factors.

Growth factors for what, you say? Glad you asked.

You see, when a newborn comes into this world, he/she has holes in their gut to allow for the colostrum and the large proteins (anti-bodies) to easily pass through the intestinal wall and enter the blood stream to make it's way around the body. So while essentially this makes the newborn's gut "leaky", it's a physiological (completely normal) process unlike the pathological leaky gut that I, as well as many others, have suffered from.

Growth factors (such as epithelial and epidermal) stimulate the gut to develop and essentially patch up the holes within the first 2-3 days of birth. Really think about how incredible that process is. Then consider what a colostrum supplement could do for your damaged gut.

The uses of colostrum for leaky gut and various autoimmune diseases are becoming more and more popular again as people are beginning to realize that the foods we put in our body directly affect it's ability to heal itself. The links I've provided below, and especially the ones located in my original post on this topic {found here}, provide some remarkable information that I highly recommend you read through.

Here is a piece from an article (found here) that sums up the link between leaky gut and disease very well:

"Leaky gut syndrome is directly associated with many autoimmune diseases, including allergies, alopecia areata, Alzheimer's disease, autism, chronic fatigue syndrome, Crohn's disease, depression, diabetes, fibromyalgia, food allergies and sensitivities, heart disease, HIV/AIDS, irritable bowel syndrome, inflammatory bowel disease, multiple sclerosis, polymyalgia rheumatica, Raynaud's disease, rheumatoid arthritis, scleroderma, Sjögren's syndrome, ulcerative colitis, and vasculitis. (17-27) The connection between leaky gut syndrome and these autoimmune conditions is the antibodies created by the body in response to the toxic substances and undigested fats and proteins that leak into the bloodstream and attach themselves to various tissues throughout the body, create an allergic response, trigger the destruction of tissues and organs, and create inflammation. As toxicity increases, autoantibodies are created, and the destruction and inflammation become chronic. There is a tipping point at which the body cannot recover from chronic inflammation, and pathological (disease) diagnosis follows."

Diabetes, depression, cancer, asthma, autoimmune disease, skin disorders, heart disease, inflammation, and even athletic performance are among the many reasons people are supplementing with colostrum. The list goes on and I personally have experienced it heal my gut, reverse nearly all my food allergies/intolerances (still healing-- but I'm about 95% there) as well as improve the quality of my hair, skin and nails.

Warm regards

Colette

helbell profile image
helbell

I have just taken the time to read your profile, and deleted my last comment.....I could not believe somone would just stop taking thyroid med when their body cannot make it. I am just guessing that with your other health issues, thyroxin is not, or seems not to be a good treatment experience. I have no idea professionally which came first for you but much literature talks about af, strokes and pulminory disorders in the bigger thyroid hormone disease picture. I wish you well in your decision but agree with others who have explained the pitfalls of letting your body go without. It might be worth expanding on your health issues because just keeping it personal leaves everyone who might be able to help groping around for clues. Remember, your identity is securely hidden.

belford profile image
belford in reply tohelbell

Hi Thanks for your reply my stopping my thyroxin is not the only thing I have stopped but firstly let me say why I have done so.

I have seizures every time I go to sleep I had carers at night to make sure I did not choak in a seizure now the UK government has said they are cutting back on carers and have even closed down our independant living fund which allowed us to live independantly and have carers we went through a very strict medical to get those carers then they were suddenly stopped I have fought for the past six months to get mine back with no joy what so ever so I go to sleep at nights not knowing if I will choak to death as two of my friends have done lately whilst in a seizure nothing will make the powers that be give me a night carer back because of the cut backs, so that is why all my medications ie warfarin, Copd, thyroxin and a few more medication every other medication except for the Morphine, and Tramadol 200 for the pain and Uniphyllin that helps my breathing I have stopped so its either try to force them to give me my carers back this way or carry on dreading and fearing going to sleep in case I do not wake up I am on a very high dose of seizure medication to try to ease them but they are pretty bad and as they say there is no more they can do to stop the seizures it gets kinda scary to think will I be ok if I go to sleep

belford profile image
belford in reply tobelford

I forgot to mention my thyroid was deseased so they destroyed it with radiation

Heloise profile image
Heloise in reply tobelford

belford, I can't give you any research studies but T3 is being trialed for bipolar disorder which indicates the brain's need for T3. Might you consider taking that? How about the nutrients that the brain also needs. This man knows a lot about anatomy.

youtube.com/watch?v=rNDYRp4...

belford profile image
belford in reply toHeloise

I DO NOT HAVE BIPOLAR MY ELDEST SON DOES AND HE WILL NOT TAKE ANY MEDICINE UNLESS IT IS HEALTH FOOD SORT BUT HE HAS ALSO FOUND IF HE WORKS UNTIL HE CANT WORK ANY MORE THEN HE HAS NOT GOT TIME TO THINK HE REALLY DOES WORK HARD AS WELL USUALLY PUTTING AT LEAST 14 HOURS A DAY IN AS HE IS SELF EMPLOYED

Heloise profile image
Heloise in reply tobelford

Do you consider a hormone as a medication? Some feel that replacing something your body is missing is not the same as medicating. Perhaps your son should consider it and also coconut oil and omega 3's.

You on the other hand have no thyroid and while your ovaries may produce some thyroid hormone (your body tries to supply what you need in remarkable ways) you must be terribly short in supply and you really need it.

Did the seizures begin before your thyroid problem?

belford profile image
belford in reply toHeloise

I have had seizures all my life just as both my sisters did the eldest behaving violently 24 hour prior to her seizures in the end she had a labectomy to try to stop them they didn't of course and sadly she died when she was 18

I also had to have a full hysterectomy when I was 29 so no overies

I see my doc later today so will ask him about things as he will be more worried about my missing my warfarin than anything as I am a multistroker cant win

I even asked my MP to step in and help to sort this all out as it has been going on since this past July but since she has been told I have stooped my medication she just does not want to know that's Victoria Atkins for you the conservatives said they would not do anything to harm the disabled huh who they kidding they have stopped nearly all the care for people

My son takes that oil already he is very much into anything that isn't made by chemicals if it is natural he will try it he also says eating red meat or any sort of meat in his case is bad for people yet doesn't push his ideas just every so often mentions how bad chemicals are for people anyway thanks for your help

helbell profile image
helbell in reply tobelford

Hope it went well today...

Heloise profile image
Heloise in reply tobelford

I hope you will try the epilepsy forum, Belford. People are more helpful than doctors at times.

Did you ever see the movie Lorenzo's Oil? Even Downs syndrome was very effectively modified with the right oils.

There are mouth guards for people who grind their teeth. Would that help you while you sleep? They can be purchased over the counter.

You are in such a difficult situation and I hope you can find a way out.

helbell profile image
helbell in reply tobelford

Hi Belford,

Were you given a specific name for your seizures..like frontal lobe etc? Do thyroid hormone problems run in your family? Have you been investigated for thyroid nodules or goiters that extend into the neck as opposed to showing outwardly?

There is another topic forum here for epilepsy. Posters on this topic suffer from combined hypothyroidism and epilepsy: healthunlocked.com/epilepsy... There is probably more across the net but that is a good start.

I am amazed you are not getting more help. This must be so terrifying for you. If you haven't already joined, or asked for feedback on an epilepsy forum, please do so. Also, ask where you can get advocacy because living like that with your combination of risk factors is appalling.

I'm only another thyroid patient but it seems all the conditions you have noted can be co factors with hypo and hyperthyroidism or vice versa....it is so sneaky and insidious that other disease issues can arise, due to incorrect hormone levels, before the thyroid probelem is even picked up. Or arise because one is incorrectly medicated - very common in thyroid hormone replacement. Even more common in patients that already have af as medics, naturally, will be scared to over replace. Would be interested to see your full panel along with dose recommendations. T3 is necessary for proper brain functioning and, after a quick scoot round the net, it seems there can be a tie up between thyroid hormone levels and seizures. epilepsytalk.com/2011/06/01...

Rather than coming off thyroxine as apart of your SOS mission, ask your gp for a full thyroid panel and post it here on a new thread for admin to see, and possibly discuss medical/medication options for you to investigate. You have hit rock bottom by the look of things so have nothing to lose by pressuring for this....except your life. And you are on a crash course to your next stroke without the Warfarin. I am just hoping your doc has got the message by now and arranged crisis cover! Good luck and strength to keep fighting for what you need.

(My third edit..ahem) to summarise what I have put in a long-winded fashion, is to make sure that your thyroid hormone issues are not the perpetrators of your other conditions, or aggravated by inadequate hormone replacement.

belford profile image
belford in reply tohelbell

Hi There thanks for your reply

Things went from bad to worse today I went for my heart clinic then had a bombshell dropped on me which has mad me really angry at my own doc as she must have seen the results I was shown today yet she said nothing to me when I saw her this past Monday.

I was told my cholesterol was off the scale and my diabetic reading was really hich they were like this prior to my stopping my thyroxin now I am saddled with more tablets One is a high dose of beta blockers the other is stuff to stop my blood being so sticky the third lot is 10 ml more of statins the heart woman said they were to try to stop a large heart attack nice one I said to them so my stopping my thyroxin has had nothing to do with all these blood test results I was blasted well winning now I have to make the choice do I start on my warfarin and thyroxin again or risk a big heart attack as I did not mention to the heart docs what I was doing as they told me point blank that sheer stress has caused this and stress is one thing I have had over the past 3 months but trying to tell the social services is like talking to a brick wall so I guess being told that today I really do not have any choice do I once again thanks for your reply

helbell profile image
helbell in reply tobelford

I'm so sorry you have got in a tangle with this. Orthodox medicine just seems to tackle what's in front of them and rely on lab results. Nor do they listen. Clearly you have pieces of a bigger joined-up picture ...but no time, no funding nor training to investigate that way.

I'll be straight and say I do not think you will win anything by stopping your more immediately life-saving meds, warfarin and thyroxin. You might not be on enough thyroxin and needneedneeed.. to see your lab results. Stopping thyroxin alone or not previously being on enough will also whack up cholesterol. Not sure how the beta blockers fit in other than to ease your heart function, and Statins because you have high BP and high cholesterol? They love statins..don't they. Looks like they are chucking everything in the heart tool box at you. And stress will aggravate the lot! My thyroid levels just freak out whenever I am under stress...which I am right now. I really hope you get more help with the seizure support. You say stress makes things worse...I guess it makes the waking choking attacks worse. I do not have epilepsy but do have sleep starts waking up gasping for air and that is terrifying enough. Good Luck x

lola1956 profile image
lola1956

Yep😊

belford profile image
belford

I was taking 125mg daily I stopped as this government has cut back on the amount of hours someone can have carers mine was for 24x7 now down to 2x7 as I am wheelchair bound due to strokes

I also have seizures as I sleep this happens every night and my doc has me on the maximum dose of medication he can give me for them, I used to have a carer to make sure I did not choak during a seizure during the night now I do not have those carers so can swallow my tongue in one and as two of my friends have died during seizures during the past few months it gets scary to say the least it also get were I cannot sleep I think will I wake up in the morning, so I fall asleep when I can no longer stay awake I know I have had a seizure as I fell drunk as a lord for a few hours when I wake up plus the fact I always have one of my hearing aids fly out of my ear and usually lands on the floor a good way from my bed the Mp is fully aware of what I am doing and she could not give a dam Victoria Atkins is her name and a lot of people know what I am doing and why I am doing it and as they said to me the socail services will have to answer why they did nothing except sit on their butts and I wonder what Victoria Atkins excuse will be try to get out of the fact she did very little to try to help me, may be thats because they know I am only taking the morphin and tramadol I take for the sever pain I have

izart profile image
izart

Why did you stop the tablets, before I was diagnosed, my skin had changed, my hair was thin and I was over weight, due to the effects of the problem with my thyroid, is the medicine disagreeing with you?

belford profile image
belford in reply toizart

no it did not disagree with me the social services did I had carers for 24 hours a day now I have them for 2 hours a day I have seizures when I sleep and in the day I have absolutly noone to stop me choking whilst I am in a seizure due to the social services cutting my carers

AnnT49 profile image
AnnT49

Hi Belford,

You say you are angry with this Government and that your local MP is so unsympathetic, so I'm wondering whether this might be another way to tackle the problem with carers hours being reduced so drastically, causing you such stress.

At the moment this seems to be something that is being done under the radar, with generally only those affected being aware of it. Do you know anyone who is either a member of the Labour Party or a Union? Or perhaps you could even join yourself. According to their website, people who are retired, on low wage or not working can join for less than £2 per month. You can then send in a question for Jeremy Corbyn to ask in Primeminister's Question Time. Although you won't be named personally and David Cameron won't comment on individual cases, the fact that people's lives are being put in danger by these cuts, should be brought to the attention of the media and shame the Government into making changes to this policy. And who knows, behind the scenes, perhaps your own MP will be questioned about your own authority's actions, which in turn would benefit you.

Worth trying?

belford profile image
belford in reply toAnnT49

Now that's not a bad idea my foster daughter has found out that a group fighting this government are now at the UN level as this government went against the UN charter and desided we do not have to comply with article 8 of the UN charter for disabled people so this group is challenging that stance the conservatives are using in effect saying to the UN the laws that the UN have are useless the fact that the UK was one of the countries who wrote those laws and we signed to always obey them all the fact that the UN laws take precedence over ours this government are totally ignoring so this group want this government that is in now brought to account

and to make the UN make this government put the ILF back where it was it will take a long time but at the end of the day I sure hope it works as if it does it will benefit so many who are clearly disabled. sometimes I would like the powers that be could see my next door neighbour who is claiming all he can claim saying he is ill he had a hip op 3 months ago and digs his garden does building work even works and is supposed to be so sick when he goes for his DWP medical that he walks with two crutches which he does not use at home and here is me and people like me who are really genuinely ill and we get our help cut he just gets every penny he can from the DWP and yes some people in this village have reported (not me) him only they told us they were told he is allowed to work that's news to me if someone is as sick as he is supposed to be, four weeks ago he and his son in law built a chicken coop and nothing has been done and we who really are ill cant get the help we desparately need yet my next door neighbour his partner his son in law and daughter are all claiming disability allowance and sickness benefit and bragging that they are doing so. is sure is so maddening

anyway thanks for your wise words

Sue (belford

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