DRIVEN BONKERS about time we had 100% answers researchers!

We are all in this, trying to find what to take, what not to consume, wanting a cure, told there isn't one or read it may be possible to get some kind of remission.

You recall I, as some, can't take the meds, severe side effects. I also had several useless doctors so learned a lot from this site and internet.

I did an iodine test which showed deficient.

Having high TPOab we presumed auto immune.

"Don't take iodine when auto immune" (altho I have had some supplements with it in and later iodinised salt instead...time goes on)...

"Some Hashi patients find they reverse the Hashi (auto immune) when they restrict Iodine in diet / don't take supplements"

"The body needs Iodine"...

WILL SOMEONE SORT THIS OUT PLEASE!

If the body needs Iodine and so does thyroid - how they hell can it work if you restrict it?

This may appear a rant, but you see, I am trying to cure self - NO COMMENTS ON THAT - BEEN THROUGH MOST!!

I have SEVERE anxiety, DISABLING AGORAPHOBIA, panic....

I have had for over twenty years.

Going back to that time, I wasn't tested for Thyroid nor auto immune, was given nasty meds - side effects (no need to say more) anyhow I LATER took St Johns Wort which helped me get walking (as loss of balance and agoraphobia now means housebound). ANYHOW... so in the past (without knowing about thyroid or auto immune) SJW helped a bit!

I now read anxiety / agoraphobia linked to lack of T3...

Then I read anxiety / agoraphobia etc is caused by high TSH

I was just about to trial (get up the nerve) to take SJW over the winter, but rather not take anything really - but so desperate to be able to go out and about and know SJW helped in the past....

IT SAYS ON HERE AND INTERNET DONT TAKE SJW with hypothyroid / Hashi as it raises TSH...oh for heavens sake... and I don't have room for it to go up....!!

It was a small trial 15 years back researchers did, not seen newer and was 'done by phone'... errrrr pardon?! It had low test value but determined TSH went up...

It doesn't say what happens if not on Levo...did they mean on it or off it? Because if on it (which I am not any more) then it rids thyroxine out of body faster allegedly... so will it harm in my condition when not taking - elsewhere it says affects enzymes...or liver... bla bla...

I fear taking it could weaken me more and I am already bad... but actually was doing quite well when came off T4 and Docs didn't want to give me T3 due to weird heart effects... (another worry with SJW possibly too)... they of course refused point blank on glandulars... I am cutting story short here so no lengthy discussion on these points..

I just need to know if anyone has had the OK with St Johns Wort without it affecting TSH....please?

If you are also lacking Iodine and have Hashi and have got to bottom of whether Iodine does or does not cause damage....and were you advised to take it and does it matter which form -?

I know about balancing selenium etc...it is just I kind of ditched the GPs as only interested in PHARMA I think... sorry!

A natural doc told me Colostrum & Nutrithyroid but again I read up and changed mind before trying (old posts on it.. so not going into again)....

I will likely do as I feel... but in turmoil this moment, so specific answers would be good for us all -

Have you all written to any research department to demand they get to bottom of matters? We all post online but when will this change (GOV MONEY ASIDE)...

72 Replies

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  • Researchers will never be able to give 100% answers on humans simply because while there are enough similarities between humans e.g. the stuff that makes us all part of the human species, within that we are all unique biological organisms. This allows the human species to survive in environments that vary with temperatures from -40c to +40c. So all researchers can do is state with a statistical degree of certainty whether something worked for a group of people or not.

    In regards to supplementation the standard medical view point is that you shouldn't supplement ANY vitamin or mineral as you should be able to get all your nutrients from food. Due to this they have added iodine to levo and presume you have sufficient in your diet but the levo has a bit extra.

  • Who said they added iodine to levo? Where did you get that information?

  • It is a form of iodine and tyrosine but a manufactured ready made iodinised synthetic hormone - ( I may not phrase that correctly) but I know it had it in it.

  • It's not iodine added to T4. T4 is four atoms of iodine. Levo is synthetic T4, but it still contins four atoms of iodine. They haven't added iodine to levo, levo has to have iodine or it wouldn't be thyroid hormone.

  • Thank you - I am working hard on diet and of course the rest considering how to absorb etc, but so hard.

    As said I cant take Levo, but I do know Iodine is in it. :-)

  • The point about Hashi's and iodine is that iodine stimulates the thyroid gland. And if the gland is stimulated, the antibodies will be stimulated. So, all the symptoms caused by the antibodies will increase, due to increased antibodies.

    Plus, the gland will just be destroyed faster. A) because of the increased antibody activity and B) because it cannot maintain the activity forced on it by the stimulation of the iodine.

    You may be deficient in iodine, but how is iodine going to help you when your gland is being attacked and destroyed by the antibodies. It's because of that that your gland cannot work to its full capacity, not because of a lack of iodine.

  • I get that, but this is the point of my questioning you will appreciate. Thank you! It is so confusing and logic doesn't seem to lead to what outcome is needed. Body can't do without Iodine and makes no sense being unable to consume it. Of course don't want a faster destruction of gland and that is why selenium needs to be balanced etc.

    It doesn't tell me what to do though, to remain as safe as possible. :-)

  • It's not just a question of selenium. With or without selenium, iodine will stimulate the gland.

    Nobody is suggesting you eliminate iodine completely from your diet - I don't think that would be possible, anyway. Just don't take supplements - even if you desperately need iodine, it's not a good idea to supplement by yourself, you should do it under the guidance of a doctor who knows about iodine.

    We don't need a very high daily dose of iodine because it is recycled in the body If you take 100 mcg levo, you get 60 mcg iodine. Taking more on top wouldn't be a good idea.

    You don't want to take levo. I understand that. But, have you not considered T3 only, or NDT?

  • Selenium is meant to balance out in the gland with the iodine to protect - more to read!

    I will have iodine in the diet, but still deficient according to private test.

    Levo nearly keeled me!

    As above, GPs wouldn't give T3 but as I have some weird heart effects not good idea and as for NDT no chance - I asked numerous.

    I cant afford to pay out, nor can I travel anywhere. :-)

    Very tricky.

  • Yes, it is. But, iodine is not he answer.

    Do you have any idea why you couldn't tolerate levo? Do you have any nutritional deficiencies? How's your cortisol?

  • They normally say can't convert, but I had heart racing, high bottom blood pressure, constant dizzy described as head going round and round all the time, as opposed to going dizzy. We swapped about, brands, levels and couldn't raise it.

    I couldn't even bend down to sweep a single dustpan brush and reach up to put in bin.

    I felt the first ever tablet semi disable up spine so legs wouldn't go.

    I was kept on Levo for most of a year like that and GP denied anyone has side effects.

    Cortisol was a high morning one and they didn't do 24 hour, I am rather poor so it is STILL on my private test to do list but GP said no point as was max in morning - don't ask me where they get ideas from but I argued over so many thing with them, I gave up.

    I went to private 'natural doc' once and couldn't afford again, but as above, they recommended Colostrum (which I read could cause cancer) and other things, they recommended Nutrithyroid and a list of foods including things we know to avoid, which I pointed out - this made me doubt them and they were meant to be specialist!!

    Probably with me, I am delicate as been ill so long and would say misdiagnosed twenty odd years prior to.

    I'm just one of those that can't take things, very rare I take any med without side effects.

  • Yes, but levo isn't a drug, it's a hormone. Unfortunately, the majority of doctors know next to nothing about hormones! Or about nutrition, and we do need optimal levels of nutrients to be able to use the hormone. But, doctors don't know that.

  • Believe me, after I started on this site alone, I let them know - but alas, they even lied to me. Example (as others found) Vit D, I asked several times for them to test it.

    1) They said I wasn't old enough

    2) They agreed to do it, yet failed.

    3) They again went to and lab said didn't include separate vial.

    4) Next time they said cant do it because it has to be in lab in 10 minutes!

    I didn't go back for more thyroid tests or regular as meant to, had enough!

    I do want to know levels and I am fainty with tests anyway - fingerprick was my aim... not done yet, but this is how it goes when broke, drained, cant go out and about etc.....can hardly get about house.

    I do focus on TRYING to get the things we need in diet, have tried some supplements but not aware if any good or not. Not taken higher levels incase.

    Long way to go.

  • Yes, but it's a bit hit and miss without getting the basic tests done. Some things you just shouldn't supplement without getting tested first. You won't know if you really need it, or how much.

  • No and it annoys as I swing from reading one thing then wont try it as something else puts me off and so on for many.

  • I and many others cannot tolerate levothyroxine and some have a gene defect which means they cannot definitely convert it.

  • Ahaa! Thank you! Eventually my GP agreed some cant take it but no detail - he obvs asked someone, as it took months of disagreeing and me suffering first. Maybe I have something like that but I am funny with even some Vit tablets, not same, but past hormone tablets made me have some bad side effects. Sure docs have caused me worse case than would have been.

  • Sounds just like my adrenal symptoms - but I have low cortisol. T3 helped.

  • Hiya and thank you, I defo need to try harder to get that tested, but never easy when poor.

    Whilst docs said fine with high morning, apparently can drop low later on and I find I get so tired after being up some hours, it feels like SOMETHING drops and I cant see it is T3 as after sleep, the next day etc, I start same pattern. I have had immense stress, years so be interesting.

  • Cortisol should be highest in the morning and drop throughout the day, but you shoudl be able to make extra in response to stress. I had low normal cortisol, but next to no extra production when stressed.

    If you are undermedicated, your T3 will be low and I found that taking T3 helped my adrenal symptoms as well as my thyroid. It would be the same pattern every day as your T3 and cortisol production vary throughout the day.

  • This is fairly new for me, the later strong fatigue, noticed as abnormal.

    Thing is my results were always weird... lacking T4 on several tests but T3 was fine LOL... TSH was extreme off scale high even on Levo then couple of times T4 and T3 in range and TSH still out of range - Doc was baffled with me haha!

    I will need to save (goes on for years) to get tested for adrenals..

  • That is the way it usually goes - your thyroid goes all out to thrash itself into producing enough T3 to keep you alive (High TSH) - then it fails to do that. If you have high normal T3 and low normal T4 and are not taking T3, it suggests that you are good at converting T4 to T3, but aren't on enough meds if your TSH is still high. just in range is no good for FT4 and FT3 - need to be about 75% up the range.

  • I know it's likely to get worse, it did give hope though, but I didn't expect anything, the converting likely didn't happen on T4 - still we battle on.

  • Well, if you can't take t4, you can't take NDT as it contains T4. Are you sure that not getting on with levo wasn't because your adrenals needed support?

  • I asked all that and doc denied adrenal as said high cortisol to max in range meant adrenals working fine... sighhh... but now given up on docs FOR NOW at least as they made me more ill.

  • All thyroid hormones, natural or synthetic, are made of iodine - it's what they are. T4 is 4 iodine and T3 is 3 iodine.

  • Yes and see, they tell you not to take it (if not on meds but on it defo not as is extra)...so why tell people to stay off it when Levo IS it!

  • All thyroid hormones are made of iodine - that's not the same as taking, for example, potassium iodide, as a supplement. It's a bit like saying eating celery is the same as eating salt as they both contain sodium.

  • Yes - so, when reading one will say iodide is best, next says iodate is bad... yet that is in iodised salt which is said to be better than tablets... then you read Iodoral as contains mixed iodide and iodine LOL.. confused is why I posted :) I want all the garbage off the internet and 100% truth LOL.. got to try haha.

  • High priests of the Levo-religion work hard do disqualify all unpleasant research. But easily forgetting that Levo proved to be equal or worse than placebo: ncbi.nlm.nih.gov/pubmed/116...

  • Thank you. So many cant take Levo and of course other meds hit or miss but wont CURE as such. So frustrating.

    Thank you for the link ;-)

  • There s no cure for Hashi's. And levo isn't meant to cure anything. It's thyroid hormone replacement, like T3 and NDT, jus replaces the hormones your gland can no longer make enough of, so that you don't die.

  • That is what we are told and that is why I posted - in hope some researchers get finger out and get to the bottom of it.

    I don't believe they can cure other things but left us all on a heap ;-)

  • I really don't think it's going to happen. Quite a lot of research has already been done on iodine, but they have not come up with any definitive answers.

  • Thank you - I know, we are left dangling and you see bits of research, take stem cell as example only ( I am not mentioning to treat us) but it feels like they missed a step our - US! Auto Immune diseases -Hashimotos, of course. I am one of those dubious types anti Pharma now, but I have had numerous scary issues with various meds, including not thyroid ones. I tend to believe they think they can keep us all ill as life treatment is money for them, albeit you get the cheap Levo offered, it IS in vast numbers.

    How many cant work, I wonder? How many are so incapacitated by all this? It is simply wrong isn't it! :-)

  • Well, you got that right! But, while Big Pharma rules the roost, things aren't going to change very much.

  • I am sure they will think that. I WAS pleased recently that ONE 'DOC' was on TV - Doctor That Gave Up Drugs (obvs not thyroid meds) as I feel whilst two programmes, it COULD trigger more thought - well if it doesn't, we know some bigwig has butted in - but with NHS as it is, I think they WILL work on costs with Pharma.

    I wrote to various in past pointing out and have seen mutterings since. Not sure this GOV will do much :-)

  • Nah, don't suppose it will!

  • So true

  • Thank you - how annoying we are all left to suffer due to greed, as I truly believe the body MIGHT be able to be made better if they were honest. :-)

  • I do remember quibbling with a doctor (not an endocrinologist, I've never seen one of them) about something thyroid related. He refused to listen and said "When you've carried out some randomised controlled trials I'll listen."

  • See - we get shut off.

    Thank you for your comment :-)

  • Most do not like to hear you quote WebMD

  • Is that a naughty? I look at lots of sites and think of Pharma and tales of fibs (generalising here)...

  • I am really sorry you have had a terrible time, a trauma really, in getting diagnosed plus all of the other effects of not being diagnosed or given thyroid hormones.

    Nearly all of our good doctors who were trained in the 40's and 50's knew all the clinical symptoms and given NDT because there were no blood tests - only symptoms and the first successful thyroid hormone was used since 1892 up until levo was the 'choice' of the Endocrinology Depts worldwide as they all fell for the 'promotional aspects' of Big Pharma and also with monetary incentives, levothyroxine replaced Natural Dessicated Thyroid Hormones.

    This is a link and the website is now archived as it was by a Doctor/scientist who was an Adviser to Thyroiduk.org.uk and I'll also give you a link to his archived website as he has since died. Links within his website may not work. He also would never, ever, prescribe levothyroxine at all, he prescribed NDT or T3 (for thyroid resistant patients). He only took blood tests for the initial appointment and then all the emphasis was on the patients' improvements. Other Topics are at the top of the page.

    web.archive.org/web/2010103...

    web.archive.org/web/2010112...

    excerpt from the above link:-

    ONE OF THE WORST DISASTERS in the history of medicine is the

    endocrinology specialty’s modern guidelines for diagnosing and

    treating patients whose bodies are under-regulated by thyroid

    hormone. These guidelines and the beliefs they’re based on have

    caused a worldwide public health crisis. It involves the chronic ill-

    ness of scores of millions of people and the premature deaths of

    incalculable numbers more.

    Each year, billions of dollars are spent for drugs intended to control patients’ chronic symptoms; the drugs are largely ineffective and often induce adverse effects in the patients. Researchers who fail to recognize that the cause of the patients’ symptoms is under-regulation by thyroid hormone do studies looking for other causes. Since they are blinded to the real culprit, their fruitless efforts squander billions of research dollars.

  • Wow! And thank you!

    I haven't the energy to type all symptoms but if I mention sensations of stopping breathing and lots of weird things, when live on own, no help, it has been scary.

    I thought I was getting a bit better but I doubt it, as now very weak, cant stay awake normal hours, often, have slept during day to nights again, round and round.

    I did a private T4 T3 and Iodine test (waters) once and it showed back in, not high but mid range, it gave me hope but then I worried TSH was even higher as already went off scale LOL.

    I also check temperature and I have been as low as 32 few years back YIKES, docs never mentioned, then 34 and 35 point for couple years and have hit 36.8 highest on couple of checks, but would likely say 36.4 now, but utter lack of care and I mainly learned through this site, thank you so much for all you do x

  • Tick off symptoms on this list. We have to find our way through with the help of others' experiences and we can do. It would be lovely if the doctors could also do so but are nervous about being reprimanded :)

  • I understand they are tied but we aren't going to accept this much longer are we.... or I won't, I have written off to various and will keep doing it, being a pest LOL.

    I cant recall who but few years back likely NHS/Med dept told me who to write to because we CAN ask what research we want doing, the issue is... needs everyone to do it....maybe if anyone wants to and finds who ...or again and again ;-)

  • I don't know if you are a member of Thyroiduk.org.uk.

    Lyn Mynott the Chair of Thyroiduk.org.uk and the staff are always working to try to change things. You can also become a member and I've just received today my quarterly Harmony Magazine giving up-to-date info and what is happening and what's the aim. Also click on 'Get Involved' in the following link:-

    thyroiduk.org.uk/tuk/About_...

    The more members the better as it's difficult to go-it-alone trying to change mindsets :)

    These are two videos by Lyn on Youtube:-

  • Thank you so much. I think I was, however, brainfog, will have to trace that back, LOL.... this condition turns some of us (ME) into (gluten free) donuts haha :)

  • :) It's £20 for a year and I imagine all 45,000 of the HU members marching like the suffragettes into Parliament asking for Change/Options.

  • Oooh I hope so :)

  • B12 - when I forced GP to test it was something like mid range - not got to hand but say it may have been 199-600 I was at 400, I think and told wasn't anaemic due to shape of cell or something - I had in mind ferritin (they wouldn't test but not gone back to force), as hair has fallen out a lot...on and off, iron was ok when tested so GP argued no need to do ferritin...grrrr... and as I said I saw several. :-)

    Does mid B12 (and bear in mind could be lower now) mean too low in our eyes? Should it be high really - or will that cause some cells to be wrong shape.

    I also have petechial spots of bleeding in skin - GP had no clue and said fine.

    Finger nails grow down on one corner and nobody can tell me what that is... also nail beds changed to quite pale with reddish line round top - if you look it up says kidney...ooer but GP said likely general illness and nothing to worry about.

    You can see why I gave up LOL.

  • One single shop bought vit A C E with Selenium (at start of diagnosis) made me go strange, as if passing out, not sure if felt eyes popping our but blurry vision... felt instant side effects from one - it could transpire that the selenium did that, IF at that time I was iodine deficient or maybe it made me hyper for that moment - I didn't take any more but can handle the odd brazil nuts now -

    that said I get pack of organic peeled ones and often can taste something like the smell of fisons weedkiller or like baby sterilising fluid... may be chlorine? which taints mouth after spat out upon such a bite and this happens over numerous packs... even another store, in fact happened in mixed nut pack too - it is horrid.

  • They might be rancid nuts - supermarkets leave them around for years. They last longer in the shell, but are more awkward to eat. If you don't like nuts, don't eat them. Supplement organic selenium (methionate, I think).

  • Some are but this is chemical taste :-) It is best source of selenium, still says on pack, even if some are old.

  • The amount of selenium in Brazil nuts varies hugely depending on where they come from so they are not really reliable as a source. In addition selenium may not be what you need just now. I tried supplementing with selenium once but had some bad side effects and it turned out my body did not really need it anyway. The frustrating thing is that sometimes the order you supplement things in is really important and one thing will not work without another. Any ideas about your ferritin and vit 3? They might be just at the bottom of the whole pile and need to be addressed first.

  • I know brazils vary so only do 2-4 ish here and there :-)

    Interesting you also had side effect from selenium, mine was A C E Selenium but wouldn't expect a vit pill to cause such...scary!

    At the time I didn't have a clue was deficient in iodine tho.

    Ferritin and vit D docs failed after several requests, but I have tried to make sure get iron - my iron score was in, and yes know it can be and doesn't reflect ferritin.....and I have had hair fall out so thought ferritin, once learned that is... but now read literally couple days ago on the B12 and hair... my B12 was mid range

  • I tried Solgar Selenium which was meant to be the most bio viable one but well ... not for me. Iron is tricky as well as you probably well know 8-) My ferritin was on the floor (iron in the range though) when I first started the whole testing thing and ... the iron I was given (again Solgar and meant to be very gentle) did not agree with me at all! I now rely mainly on my kinesiologist to test and find supplements for me when I need something as otherwise it it just a waste of time and money to take other stuff. And she also can test for what is the priority and needs to be addressed first before any other things.

    Why we have hair fall out is the million dollar question as far as I am concerned. Iron helped a bit, so did vitamins but it is still an issue for me though I can now see improvement which bioidentical hormones I have just started taking. So the story goes on....

  • What exactly does the kinesiologist perform on you, because recently one said to me they could establish if I can tolerate St Johns Wort and I thought weird - but I didn't want to ask too much as money etc, thought they were selling me their services - well they were LOL.

    How do they fine what supplements? Is it some machine as she said something about muscle, massage acupressure?

    Yes iron GPs test and fob you off saying fine.

    I started some Spatone but apparently it is very weak.

    I used Solgar products many years ago...I thought they were a top brand... oh dear :-)

  • Kinesiologiy in short is muscle testing. A kinesiologist lightly presses fingers on your muscle (usually in your arm or leg) and tells you to hold the muscle (but not actively resist) which it either does or does not. So depending on what your are testing your muscle either remains locked or unlocks and this response informs the kinesiologist whether your body likes/needs something or not. You usually test against a substance e.g. a supplement, medication etc. or against the so called programme which can be your hormonal function, structural issues etc. It is difficult to describe and certainly feels weird at first to see your body responding without your conscious thought in different ways but really, really accurate if your kinesiologist knows what they are doing. Mine certainly does and keeps me happy (and going on in general).

    Solgar are a top brand - just not quite for me at the time 8-)

  • That is precisely how I didn't catch on to what she was saying LOL, I couldn't see how any hands on could pick out any array of supplements etc. I am likely so weak, full of mucin and loss of muscle, I don't know how they could tell.

    I am already sensitive to tablets etc with no knowledge of ingredient effect - just strange altogether.

    Thank you soooo much ;)

  • Oh, they can tell, no problem. There are plenty of muscles that can be used however weak and detox might be high on the list of priorities.

    The beauty of this kind of test is that you do not have to take anything for it to work - substances tested are just put on your body (usually you are comfortably lying on a couch for testing) and that is enough to see the muscle response. You can also test for food/ingredient sensitivity/intolerance. You can even test by proxy - somebody else is being tested instead of you if they have a lock of your hair on their body. Still works.

    How is that for weird? 8-)

  • Hahaha definitely hard to believe but hey... we must stay open minded LOL :-)

    I presume a degree of undressing... I am such a prude as well as not keen on touchy feely.

    Funny ole me haha :)

  • No undressing involved. I guess you just need to try to know what it's really like but as treatments go this is as comfortable as you can get and noninvasive as well. Good luck!

  • Thank you, hope all pans out good with you too :-)

  • If you have primary hypo, lack of T3 and high TSH are probably the same thing.

    If you are iodine deficient, you need iodine up to "normal" levels. If you are not iodine deficient, you shouldn't supplement - unlike, for example B vitamins, iodine can cause problems. You might be able to get sufficient iodine from foods, as long as they are grown in soil with enough iodine.

  • Doing by self is hard, again need to save up somehow to test again to see what level, lol

  • An European prominent endo-professor is one of the three writers here: thyroiduk.org.uk/tuk/TUK_PD...

    A long document but the two first pages already have much of the message

  • Thank you so much for that :)

  • So no sooner speak and another article springs infront of me ( I wasn't searching) that other countries are now (and maybe they were) researching Auto Immune conditions (not mentioned thyroid) and think they are close to finding out more - hmm, we hear this all time and nothing done for years.

    Stay on top of them all as whilst every auto immune condition needs cure, we don't need Hashimotos for example, being omitted in trials.

  • Hi Storm

    You need more information on the benefits of taking Iodine. Every cell in the body requires it. See: Dr David Brownsteins's presentation :

    See also Dr Jorge Flechas's presentation about whole body Iodine Sufficiency.

    Check out Stephanie Buist's Facebook page on why anyone with a thyroid condition needs Iodine - She cured her Thyroid cancer following Dr David Brownstien's Iodine protocol:

    facebook.com/groups/iodine4...

    You need to take Selenium (200mcg) before starting on Iodine otherwise it will make matters worse.

    Further to the comments earlier about there being no cure for Hashimotos -This is wrong.......

    There are quite number on Stephanie Buist's Face book as well as a number of Americans who have their Hasimotos in remission:

    Check out Dr Isabella Wentz who has written a very clear and simple book on how she put her Hasimotos in remission !!

    amazon.co.uk/Hashimotos-Thy...

    Best wishes David

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