Horribly normal = horribly wrong? How???

Hi, I have been diagnosed with subclinical hypothyroidism. I'm not currently receiving any medication. The doc tested my antibodies (only the anti thyroid peroxidase; he said that was the only one they did) and I finally got my results back.

I have a staggering 3.5 out of a range of 0-50. It's so pitiful it's embarrassing. I know I should be pleased - hey, no autoimmune condition! - but all I feel is deflated and fed up. I was absolutely sure this was an autoimmune issue - or to be precise, a sign of a bigger autoimmune problem. However, now I have a whole new problem: no evidence for an autoimmune problem, plus what IS killing my thyroid if not that? Why is it failing?

I don't believe in a genetic answer, not that I don't think genetics is part of it, I know it is, but I don't think that causes it, merely gives you a propensity for problems. There has to be an environmental factor to trigger the condition - if it's not autoimmune in my case, what is it?

I know I read recently, but unfortunately have been reading so much I've lost sight of where, that your thyroid can be so demolished that thyroid antibodies drop away to nothing. Is this a possibility? Surely if my thyroid was in this kind of state my TSH would be through the roof? (It's 'only' 5.2)

I do have some other new thyroid stats that might help. My free T3 was 4.1 (range 2.6 - 6.2) and total T3 was 1.2 (range 0.9 - 2.4). They also look horribly normal. Yep, I'm horribly normal, with an abnormal thyroid. How is that working?

If anyone could throw any light on this, and whether autoimmune might still be an issue here, I'd be most grateful. I don't want to hang onto the autoimmune theory if it is BS, so please don't pander to me - just tell it like it is!

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  • Chancery, If you've been gluten-free for a while it is possible for Hashi antibodies to clear up. If autoimmune was ever an issue it isn't now but your thyroid is failing with TSH of 5.2. Iodine deficiency also causes hypothyroidism so maybe you can persuade your GP to do an iodine test?

  • The uk soils were declared iodine deficient about 4 years ago. Nothing has been done... Iodised salt is sometimes available in lidl but there is no national concern.

    If you are short on iodine then the thyroid has no building material to work with.

    Might be worth a look? More on iodine at. bobbyshealthyshop.co.uk/ind...

    Xx g

  • kelp provides iodine - you can use it instead of salt in soups, stews etc. But iodine is a double-edged sword, isn't it... Best to research it carefully and go canny.

  • Will do, Asp, thanks!

  • Hi Galathea, thanks for the link - that's useful. Iodine could be a possibility since I had some kind of B12 deficiency and also found out yesterday that I am Vit D deficient, despite supplementing it for months. So yes, I'll be looking into iodine.

  • Hi Clutter. No, unfortunately not gluten free - quite the opposite! I've been eating a lot of it in an abortive attempt to get coeliac testing. That all went t*ts up too. But I'll look into iodine, thanks. That's one I haven't yet researched.

  • Chancery, I'm not suggesting you supplement iodine unless you test and are found deficient.

  • No, Clutter, don't worry. I'm not a supplements fan so I only take them when I have a sound reason to do so. I do seem to have acquired B12 & Vit D deficiencies though, so I suspect my gut isn't working properly - something that isn't news to me! So iodine might be the problem. Don't worry though, I'll test what I can!

  • I agree with the others that your thyroid is failing to receive enough iodine to produce T4. Taking Iodoral which is a combination of iodine and iodide might be just the thing. Your thyroid failing to find enough iodine is often fooled by fluoride, bromides or chlorine since they are all halides but, of course, the gland cannot utilize them but they do attach to thyroglobins I think. Iodine will flush these out. In the meantime try to avoid fluoride as in the U.S. they are now determining people are getting too much. I'm not sure if they fluoridate as much in the UK but try to avoid it. Use baking soda if you can't find a fluoride free toothpaste. You can find filters for your shower that reduce chlorine, too.

    I think this man has the right ideas for us.

  • I have a water filter now to remove the chlorine from the water we drink (very strong smell sometimes) and demanded husband find me some fluoride free toothpaste in supermarket. Poor thing spent ages reading every packet and eventually found one! Euthymol. That's a blast from the past

  • oh wow that is th e smokers on e right?

  • Oh I don't know - it doesn't say smokers but it's pink with the smell of the dentists and if I remember right it used come as a powder in a tin!

  • ye si think m y mum used it-- I shall get som e now thanks no rotten fluoride xx

  • No Euthyrmol is not smokers toothpaste its almost only flouride free toothpaste thats also aluminium free too

    Flouride and aluminium both attack the thyroid so check what your water supply is treated with by company and check you only use stainless steel or glass or ceramic cookware

    Do not use slow cookers, electric steamers,cofffee makers either

  • Sensodyne Original (the pink one) is also fluoride free if you don't like Euthymol

  • If you are in the UK, Boots the Chemist does a flouride free toothpaste called Smile - they also do a flouride one and no idea why they also call it Smile as well. Just read and check the tube.

  • yes this guy is great..

  • Many thanks, Heloise. I'm not a believer in the fluoride theory, I'm afraid, and I have seen this film - but many thanks for posting it, regardless. No offer of help ever declined! But it absolutely could be an iodine problem - I shall look into that one, post haste. Thanks again!

  • Ok, doubter:) I will find some science based evidence regarding halides. I was reading about these long ago and then Dr. Bergman added his thoughts and if you look at the statistics in general, it is very convincing. But doubting is good, that is what prompts learning.

    In fact, I don't know how old you are but I began reading back in the 80's or 90's in the Fit for Life Books written by two nutritionists way ahead of their time. Fluoride is a waste of the aluminum industry and they couldn't find a way to dispose of it, therefore they added it to the water supply. Fluoride is a poison that is given to the masses without knowledge of doses. Doesn't sound good, does it?

  • Unfortunately heard all these arguments, Heloise, and they don't wash (is that a pun?). Sorry, I know fluoride is much beloved on this forum as a moustache-twirling villain, but there is just no science to back it up. It's all horror stories and old wives' tales. I tend to keep my dissenter's voice quiet on this one because I feel like I am murdering babies when I bring it up, but there you have it. I'm a tough sell...

  • LOL, I'm not quite THAT passionate about the subject.

    How do you feel about bromides? Same poison.

  • I know nothing about them, but because I see them listed alongside fluoride, my brain switches off. That would be a prejudice then, I confess it. That said, though, there is so much material to learn, I want to stick to the good, promising stuff, the real stuff, so that I can make some headway. If you followed every health scare you could die before you found anything of merit. There's just too much information in the world. Got to use some way to sort the wheat from the chaff!

  • theiodineproject.webs.com/b...

    There is also a fluoride link at the top (if you still have an open mind which I don't mind if you don't.)

  • Well, they certainly don't look friendly! I see though they've been banned here since the 90s, so surely us Brits are safe from Bromide harm?

  • No - we are not.

    If there is harm from bromides, it is unlikely to be from food, but we do have significant exposure to bromine-containing substances such as fire-retardants.

  • Well, luckily, today I have not sniffed any fire retardant. Tomorrow may tell a different story...

    I jest - at least in part - but my sofa is so old there couldn't possibly be any fire retardant on it, if there ever was. Again, I'm not sure how often we actually incrementally ingest these things. Perhaps mad consumers are more at risk than skinflint recyclers like me. There's a study for someone - do consumers suffer more from illnesses than recyclers? I've broken that model straight away...

  • Yep, I actually know this study. (How cool do I sound right now?, but it's a fluke, trust me.) Unfortunately, they don't say what amounts of fluoride they're dealing with. But you can bet "excessive" means exactly that, amounts of fluoride you would never normally come into contact with. No-one's disputing the dangerous effects of excessive fluoride; what I am debating is that routine water fluoridation and toothpaste are anywhere remotely near the levels scientists call "excessive", especially Chinese scientists!

    P.S. It's also not testing on bona fide humans.

  • Sorry but your totally and utterly wrong flouride is a poison just same as aluminium is

  • Sorry right back at you, RFU, but I'm not. You THINK fluoride and aluminium are "poisons", but you don't have the science to back that up - that makes it your opinion, not a fact.

  • Try personal experience of being poisoned by aluminium 30 years ago

    There's plenty of scientific facts to prove just how poison us it is

    Clearly there's no point bothering to help you because you think you know it all when you don't

  • I'm afraid that's still only anecdotal experience, RFU, and while that is valuable, it's still not scientific proof. But I'd be interested to hear your aluminium poisoning story, if you want to share it. Providing you are comfortable with me not being converted to the cause at the end of it. No point in infuriating yourself when you are already cross enough!

  • I cant be bothered to even search out the links for you let alone tell you the horror i suffered for 2 years

    but do your own search for the post mortem report on Camelford victim done by a neurologist in Oxford

    Try doing a [proper Google search on Aluminium Poisoning

    just 2 examples :_

    Canadian miners who were forced to inhale aluminium dust before going down mines

    Dialysis Dementia

    Theres none so blind as those like you who will not see

  • Yep, just like there's no way to win people over to your way of thinking like constantly disparaging them.

  • Unless it's all due to an adrenal/cortisol source. The video will explain.

  • I did have my cortisol measured, Heloise, but it was 440, I think. Not abnormal anyway, as far as I could tell. I'm afraid the whole adrenal issue leaves me cold. I can't make head nor tail of it and there never seems to be any reliable science in it. Even if there was something wrong with it, I don't see how you could go about putting it right. It always sounds too much like a quack illness to me, designed to line the pockets of people selling supplements.

  • Chancery, it just came back to me that we've had a discussion before so I just remembered who you were and the fact I had already told you about the doctor's BB I followed. We talked about relaxation techniques he recommended so I've repeated myself. But it's worth repeating.

    Dr. Bergman constantly expresses the fact that the organs are not at fault. Your adrenal gland is doing exactly what it is supposed to do.....administering cortisol because the hypothalamus senses the stress. When cortisol is high, it causes certain areas to be stimulated at the expense of others so when you are in a constant hyperadrenal state for a long while, you will be SICK!

    He has respect for the body and his recommendations will definitely omit poisons, neurotoxins, etc. currently used by most MD's.

  • Yeah, I remember that, now you say it, Heloise. And I actually quite like Dr Bergman when he is talking about the science of the problem, but when he gets started on how to heal it, I think he just sounds like a snake oil salesman - which is a shame. For me, it kind of undoes all the good stuff that's just gone before and I feel like I can't trust anything he says. His healing cruises don't help that impression!

    It's difficult, because I know the man has to make a living. But...

  • Yes, he can be off-putting. He has a weird laugh but I think he compiles the evidence very well and that California vibe makes his casual attitude amusing to some....certainly not all. I do excuse it because of his knowledge though.

  • Agreed. I am certainly happy to watch his videos because he always puts his material across very well and is passionate about his subject. That's always good, to have conviction. Especially after seeing endless indifferent doctors! But now, you realise, all I'll be able to focus on is his laugh. I've never even noticed it before!

  • LOLOLOL. He doesn't ALWAYS do it.

  • Ah, it's too late now - I can't unthink it! Now I'll just be sitting there, waiting for him to break out his "weird" laugh...

  • I am sorry you're not feeling too good but this was posted this morning and may be helpful for you.

    healthunlocked.com/thyroidu...

    drbrownstein.com/Iodine-Why...

  • Thanks for those, Shaws - both interesting. I'm going to look into iodine problems thoroughly.

  • Hi Chancery - do you have your latest thyroid blood test results ? TSH - FT4 - FT3 ?

    Maybe you are not borderline...especially if the FT3 is low....sorry you have probably posted these somewhere - but I am in a rush !

    A GP's diagnosis of borderline can be suspect :-)

  • Hi Marz. Yep, they're all up above, I think! Yeah, they are. Here you go: "Surely if my thyroid was in this kind of state my TSH would be through the roof? (It's 'only' 5.2)

    I do have some other new thyroid stats that might help. My free T3 was 4.1 (range 2.6 - 6.2) and total T3 was 1.2 (range 0.9 - 2.4)."

    Don't know if that lot is very helpful though. Like I say, other than that hypothyroid TSH, everything looks dinkum. My T4 was 10, by the way, hence the subclinical hypothyroid diagnosis that started this.

  • My TSH was 'only' 4, but my Tg antibodies were over 1800. i was desperately ill, i could barely walk. I had 4 months off work. But they said I was fine, such is the power given to the TSH test!

  • Those are EPIC antibodies, Harry. Respect! I wish I had them, and I bet you wish you could give me them. If only we could swap! And how pathetic is it to wish you actually HAD antibodies?

  • :-D

    Actually I don't have them anymore. They have come back into normal range after a year on NDT.

  • That's great news. I don't know if you did anything to help that result but I'll congratulate you anyway; we don't get enough congratulations - well done you, yay!

  • Hi Chancery, I too tested negative to thyroid antibodies on that test after testing positive to hypothyroidism (TSH and T4). The doctor then did further tests and found I was positive to the ANA test so I am being referred to a rheumatologist.

    I asked what had caused hypothyroidism as antibodies were normal and was told it doesn't matter as the treatment is the same. Not happy with this explanation, so I did a bit of research and decided the most likely was that I could be iodine deficient. Doctor refused to test for iodine but I did patch test myself which indicated a deficiency, although I'm told this is not a reliable test. However, after first doing patch test which disappeared in 4 hours, after supplementing with iodine I gradually went up to 12 hours and am aiming for 24 hours which should show sufficiency.

    I have been taking iodine supplements along with selenium. No idea if this is good or bad for me as there are some very extreme opposing views on this out there but I decided it was worth a gamble! (Work in progress, no conclusion yet).

    Treating endocrine disorders appears to be very much an art not a science with a bit of faith thrown in for those of us who don't respond to the 'one size fits all' as defined by the health system!

  • Hi Bobsmydog, I confess I don't know what the ANA test is. Is it something I should have done here?

  • I don't know much but this is what Mr Google says!

    The antinuclear antibody (ANA) test is used as a primary test to help evaluate a person for autoimmune disorders that affect many tissues and organs throughout the body (systemic) and is most often used as one of the tests to help diagnose systemic lupus erythematosus

  • Splendid, Bob, that's the best thing I've heard all day. Thank you for that; it's come perilously close to cheering me up. I shall go and look it up right now. Even if it turns out not to be useful, you are still a poppet for giving me a moment's hope. Take a virtual hug. X

  • Aw, glad it helped, hugs to you too! xx

  • Hi, me again, Bob. Can I just ask, was it your doctor who requested the ANA testing himself, or did you have to have it done through a consultant? It certainly does look promising...

  • I have no idea of who would normally request the ANA test, but it was my neurologist who requested mine.

  • Thanks, Beans. I'm hopeful my GP might be able to do it. I'd hate to have to go back to my neurologist. Might as well ask the cat.

  • GP requested it I think because I have Raynaud's - symptoms of white numb fingers and fatigue getting worse despite having 'normal' TSH after being on Levothyoxine. He even did a test for myeloma but that came back negative, thank goodness!

    It was only on the off chance I mentioned the fingers as they don't bother me much - just a bit annoying. I guess I've learnt it's worth listing all symptoms to tell doctor however unimportant they might seem to me. I will be taking the full list to the rheumatologist when I get that appointment.

  • Thanks, Bob, that's good to know. Unfortunately I don't have much on the autoimmune front to pull out, other than urticaria, which my doc is unimpressed by, my subclinical hypothyroidism, which I don't have antibodies for, and mild Sjogren's Syndrome, which he's never diagnosed, so I'm thinking he'll be a tough sell. But I might have a bash - he can only say no!

  • Yes have a bash, good luck x

  • Thanks! X

  • Hi,

    Sorry to hear you are feeling rubbish. You don't say what your symptoms are. People with failing thyroids tend to become very low in ferritin, vitamin B12, Folate and Vitamin D. It might be worth finding and addressing any deficiencies you have. Also, when you have your next thyroid blood test, have it done first thing in the morning and don't have breakfast. That way you may be a bit worse than 'borderline' and be given some medication.

  • Hi Eeng, yeah, I've got all the deficiencies in hand, although I was surprised by an unknown Vit D deficiency. But I don't have a problem with medication, thanks. My doc's offered to give me some if I want it. I'm more concerned with getting to the bottom of why this has happened so that I can fix the real problem, not just patch it up.

  • You really need your Tgab tested. My TPO was slightly positive (according to their ranges) but my Tgab was about 1500 well positive! Some people have both, some have one and some have the other. And your doctor is an idiot.

  • yes and they do not test the things thay should be bloody testing either. control- selective seeing and hearing, an dlack of understanding

  • Lack of education, lack of intelligence...

  • Hah, tell me about it, pettals! The tests I got also came back with my coeliac test wrong AGAIN - that's twice. I am at my wits end. I don't know how I can make an NHS lab do something right, because my doctor isn't going to.

  • Oh Greygoose, you have NO idea how much I agree with you right now. If I had a gun I'd shoot him; that's how fed up I am. I know he's not the worst doctor in the world, by far; I could do much worse, but I am SO tired of this constant struggle to get taken seriously and have things done in an intelligent manner.

    I would love to have my other antibodies tested, but he won't do it without a fight, if at all. I'm not even sure I have the stamina to fight him for it. Right now I have so many things going wrong that I have to try and pick the most important fights and I feel like a headless chicken with no idea of what to do next. You have no idea how much I want an old-fashioned mythical doctor who will just take care of me and who cares about a real diagnosis and getting to the bottom of a problem.

    Anybody got one spare.....?

    P.S. Please don't be cynical and tell me they don't exist. I feel like a snail out its shell right now. Say something uplifting, for God's sake. Lie to me - I don't care!

  • I think we all understand how you feel right know. That hopeless feeling while feeling like crap and nobody seems to listen.

    My advice (been there done that), count to 10 and make a plan. First you need to be calm and then you start all over to solve the puzzle. Search, find, look in your results what is tested and what not and make a list. A list of what can help you to solve the puzzle. With that list you go to the doctor and explain. If he looks at you like you're crazy then find someone else. It takes patience, I know.

  • You are absolutely right and I know it. I've already done this so often and know I'll do it again. The raging and the tears and then, somehow, you get up and do it all again. But, by God, it doesn't half get old! Thanks again. (That's so inadequate, but you know I am grateful, don't you?) XX

  • I know and I can totally relate how you are feeling. It's just like you say, you have to get up again and keep fighting. It's hard and your goal is that some day you solve the puzzle and it was all worth it.

    It isn't easy and you should give yourself the space to feel down and cry and feel all the negative things. But try to keep going, you already came all this way.

    Again it isn't easy, you don't want to know how many times I sat crying and saying I couldn't do this anymore. But then I knew again nobody was coming to me to help me, we are not living in a magical world (how great would that be, haha). So you keep finding your strength and looking for pieces of the puzzle because someday you will solve it and you look back to all you've been through and think HA I did it.

  • Oh I know that one, Flower, the loneliness of being ill. Your loved ones do try their very hardest to put themselves in your shoes, but it just isn't easy. That's why the forums are great. For all the difference of opinions and approaches we might have, the one thing we ALL have in common is the experience of feeling sad and broken and defeated, and how lonely that can make you feel. And it's the one thing you can come and exchange with others. We can come here and vent, no matter how childish and trivial and foolish me might feel doing it, because, with very few, rare exceptions, no-one judges you. They're all on the same miserable boat!

    Sometimes it's good to have a tribe, even if in everyday life they are not people you would normally seek out - on here they are your (albeit unwilling!) soulmates, and can always be relied upon.

  • I read your reply heavily nodding yes, haha. Totally agree, it can be a relieve to read the journeys of others and knowing you're not the only one.

  • I can understand how you are feeling. Your TSH shows your thyroid is a bit struggling (did you get your blood test as early as possible?). A trial of levothyroxine could be a option.

    You don't mention your symptoms and why you think it is your thyroid (family history?). A lot of other diseases give the same symptoms as a thyroid disease. So you should also look further, vitamins and minerals deficiency can make you also ill.

    Good luck and don't give up!

  • Hi Flower. Yeah, the doctor will let me have a trial - that's not the problem. He made the diagnosis himself - one thing I didn't have to fight him for! We have pinpointed some deficiencies, so they are all in hand too. I'm really just trying to find out if this hypothyroidism could have an autoimmune component in spite of the normal figures.

  • That's great!!! Often they see subclincal as not a problem, glad to hear your doctor is different.

    I understand your question. Although I believe being "just" hypo is just as nasty as Hashimoto. Maybe a ultrasound can help you further. I once read that in I believe 5-10% of people with Hashimoto don't have antibodies but their ultrasound shows they do have it.

  • Really, Flower? Do you have any idea how that works? I mean how would an ultrasound physically show antibodies? Does it show antibody activity or something?

  • With Hashimoto the body sees the thyroid as evil so it will destroy it. In your blood this will show up as high antibodies. But on a ultrasound they can examine the tissue, if your body is destroying it that should be visible.

    I found the study about the patients with a false negative antibodies test and positive ultrasound: thyroid.org/patient-thyroid...

  • Very interesting, Flower. So what they're really saying is that if you have subclinical hypothyroidism, as I do, you're just too early in the disease for antibodies to be really apparent. Sounds about right, and what it does mean is that I could still have it, but just in the early days. I don't know if that's cheering or not!

  • It could be..and don't forget that a positive antibodies test suggests you have Hashimotos disease. Maybe a ultrasound someday can give you more information. Also you could get your antibodies tested again in 6 months or a year.

    Also supplements and diets can affect it (lower the antibodies). So it's not that easy..For the treatment it doesn't really matter, hypo is hypo. But of course you want to know and should know it if you have a auto immune disease.

  • Now I've confused myself again. Are you saying that because I have my paltry 3.5 antibodies that is still a (weak?) positive result? Or has this all got to be too much for me?!

  • No it's very negative. Everybody has some antibodies, the range tells when it is abnormal and called positive. In your case anything above 50 is considered positive.

    There are people with no symptoms and normal thyroid labs but with high antibodies. That's what I meant with that the antibodies are a suggestion of a disease, in this case a thyroid disease. The diagnosis could also be made with other tools (like the ultrasound).

  • Got you, thanks! That's what I thought. You can tell I've done too much of this tonight! Thanks for all your help - you've been great. X

  • It shows some characteristic changes in the thyroid itself. Quite a bit of info. available:

    ajronline.org/doi/full/10.2...

    One of the first things I ever read about antibodies and thyroid was that they are an indication, not a cause of thyroid disease. Because the contents of thyroid cells is spilling out into the bloodstream, some substances which usually only occur within the thyroid end up spilling out. The body then produces the antibodies to help in clearing up these things that shouldn't be there.

    The logic of that is that we would have lots of other antibodies due to the thyroid cells spilling their contents, but TPO and TG are usually unique to the thyroid. Therefore, if you see antibodies to TPO and/or TG, that precisely indicates a thyroid problem.

    I have never been persuaded that the above view is wrong despite many, many people asserting that the antibodies do the attacking. It is lymphocytes that attack thyroid cells, as I understand.

  • Hi Helvella, that's a very interesting idea. It says in the article that it's T & B cells that invade the thyroid and that they, in turn, produce the antibodies. It also says that it's the T cells, basically, that do the damage because they destroy the thyroid "parenchyma" (no, I don't have a clue what it is), so really, yes, as I read it, it's not the antibodies that are doing the damage, rather they are the 'waste product' of the T cells. So really measuring the antibodies is just a way of measuring whether the T cells have done their worst. So, by that logic, you'd think if the T cells had invaded, but not yet produced antibodies (or enough antibodies), the process could have started but not yet done measurable damage. Nevertheless it would be happening.

    It does make you wonder what would be the situation if something like this was happening but you didn't have enough T cells, or something was wrong with them. Feasibly (and I might be breaking all laws of biology here) someone could have a T cell problem and an autoimmune problem could be occurring without them being given the usual 'notification'. But that's probably far too complex, especially as I know nothing about T cells. I think that's where my next area of reading might be...

  • Auto-immune is not BS.

    Dr Hagemeyer has many great videos on Youtube. Here's one that's good:

    If you are feeling terrible and have symptoms, then you need to hunt for a good Dr that will listen and run these tests.

    The best type of Dr to go to is a holistic or integrative functional type Dr. They may cost more, so If you can afford the money I strongly recommend you bypass your regular doctors and any specialists (Endocrinologists) and head straight to a holistic/integrative Dr who will run all the correct tests plus look at other areas that are also linked to your thyroid that could be causing problems (low iron, adrenal imbalances, Methylation imbalance, allergies, gut health etc.) and treat you effectively.

    If you don't then you will continue to suffer, not get proper testing & understand the "real normal range" and waste your years fighting this battle. Believe me I've been there.

    If you don't know which Dr to go to I suggest Google search holistic or functional or integrative Drs in your area. You can alternatively join the facebook support groups for thyroid patients and ask there. Usually they have a recommended list on file for everyone.

    FACEBOOK SUPPORT GROUPS

    facebook.com/search/str/FTP...

    LEARN MORE ABOUT YOUR SYMPTOMS AND THYROID

    stopthethyroidmadness.com/r...

    Some good videos to see are below:

    What tests you should have done & what is the best type of medication:

    What to look for in a good thyroid Dr:

    You also want a Dr who won't just use the generic standard synthetic medications (Levo-Thyroxine or Synthroid) but will also consider & know how to use the alternative bio-identical hormone medicine called "Natural Desiccated Thyroid Extract"(NDT), which is just as if not more effective for most people.

    What does your thyroid do and what hypothyroidism is:

    Why the TSH test is not enough:

    You will get there and feel normal again.

    Wishing you all the best. xxx Melanie

    P.S I am in no way affiliated with any of the above and just passing on my experience and knowledge hoping to help other who are battling to get proper diagnosis and treatment.

  • I had an expensive but short appointment with an integrative practitioner whom I believe had very little knowledge of hypothyroidism. Came away feeling totally fleeced so did not return.

    I would say that people should exercise caution and not automatically assume that one will be any more helpful than an NHS Endo or GP.

  • Yes there are definitely quack both holistic and mainstream that is for sure.

    Research around and get recommendations prior. Ask questions before making an apt to see if they are experienced and knowledgeable with thyroid and its various conditions.

  • Hi Cinnamon. Yep, I have to confess that's my worry. You can pay out a lot of money to discover someone is useless! No getting it back either...

  • Hi Pmhardy. Many thanks for all the films. I shall have a good watch of those. Some I haven't seen there, so thanks again.

    Unfortunately private medicine is out the question for me, and I'm not convinced I could find anyone any better here in Scotland anyway. The UK is not yet big on integrative and functional medicine! The closest I'm going to get to some control over this is paying for my own tests and seeing a specialist in England - that's me living dangerously, and I may have to do it yet!

  • I'm pretty rubbish at giving any advice about anything vaguely medical, but I do know how frustrating it is to find out to not have a diagnosis. None of us want to be ill, but having a diagnosis at least means that you can get to grips with dealing with it.

  • Too true, Beansmummy. That's my desperate need - to get to the true bottom of the problem. The idea that something is going sadly awry in my system, unchecked, kills me all by itself - no illness necessary.

  • There are other antibody tests. I just posted these for someone else yesterday so maybe you saw them already.

  • No, I hadn't seen them, Heloise, thanks. Really interesting and useful. I like this man's work - wish I lived in the States and could go see him - it would sure as hell speed things up. I did ask my doc for the three thyroid antibodies to be tested, but I was told the NHS only did the one test - TPO. It's the story of my life...

  • Chancery, I've been at this for twenty years and from all the voluminous reading I can tell you that chronic diseases are very complex. For that reason, doctors simply cannot do evaluations without incurring such an expense of time and testing that it would cost a small fortune. The patient wants something simple and so does the doctor and that is what happens as pills are dispensed.

    The BB I followed for ten years by a conventional doctor who counseled many lost souls taught me a lot about chronic illness. Many of these poor people had no where to go with their illness. They were so desperate and willing to do almost anything and a lot of them were successful.

    He also stated (I read your post about this) that genetic consequence is only 20% of the cause and can be avoided. I think Dr. Bergman has the same bent because you have to exert some energy for your health and also have to make certain sacrifices with your diet and your time. It's a balance of what makes life worth living and what is ruining it I'm afraid.

    I hope you haven't been inundated with so much information but hope you do well and persevere because there are options.

  • Thanks, Heloise. I couldn't agree more about docs not having the time to help - I get that, I really do. What annoys me though is that I am prepared to do this work myself and my doc is always fighting me. I go to him with what I think is well-prepared arguments, interesting theories worth investigating, and he fights me every inch of the way. I can forgive him not wanting to help, what I can't forgive is him getting in my way.

    I am very much of the opinion that genetics only gives us the predisposition, it's untangling all the environmental factors that kills me. This is where the testing comes in so handy; it eliminates things at the very least, and sometimes it gives you a good lead, but when you can't even get a basic test... At the moment I am trying to get an IgG test for coeliac. I need this because I have partial IgA deficiency, but can I get my doc to help me here? No. The lab was supposed to have done this twice now and twice they've screwed it up. All this time, meanwhile, I am waiting, stuck. I am also eating far more wheat than I'd like, for tests that aren't even getting done. The worst thing about this is thyroid isn't the worst problem for me, it's my Trigeminal Neuralgia that's the real issue. Without this coeliac test my brain could be deteriorating further. Eating wheat for these tests I could be making it worse. Or not. I just don't know. It's this cavalier obstruction to something so important that angers me and wears me out. And I really don't know how to get past it.

    But there, no doubt I shall think of something. That's (now) my job!

  • I had a problem with trigeminal neuralgia this past year myself. Did he want to put you on gabapentin? I was not going to use something like that for the rest of my life. I took it for a week or two (it's an eplileptic drug) and then decided to try Gaba, an amino acid. I keep it handy and take it once in a while because it calms neurotransmitters. I wish you would give it a try and see if it works for you.

  • I've been on Gabapentin for around six months or so, Heloise, at the same time as I was also on Carbamazepine (been on that for about a year now, maybe longer). Carbamazepine didn't control it on its own. But fortunately I discovered B12 injections which sent it into remission. I was able to come off the Gabapentin but I've not yet tackled removing the Carbamazepine. Soon though, Hopefully. But I didn't know you were a TN sufferer! (I'm sure we've never discussed it?) Another rare member of the exalted club. How long did you have it for? And was it Type 1?

    But this Gaba. I KNOW I've read about this somewhere, using it as a diagnostic tool. I remember thinking it sounded like an interesting idea, but I can't remember what the hell it was about now. What is it exactly, other than an amino acid? I forgot to look it up.

  • I use a wonderful toothbrush. Non electric but it has a negative charge if you touch a certain metal spot on the handle and it pulls off plaque. (Dr. Tung's Ionic Toothbrush) I thought at first it was due to that because suddenly my teeth started to ache. Just the upper ones. This was last winter/summer and the gabapentin was really for the neuropathy I had on my toes but the dental issue resolved as well. But the Gaba works just as well and I don't have to take more than one pill occasionally. Look it up at iHerb.com.

    You should also look up Bergman's video about neurology. As a chiropractor he connects the misalignment of the spine with nerve issues and thinks that Parkinsons and bipolar are directly related to loss of the curve in the neck which I think many people have. Very interesting theory and possibly accurate.

  • Hi Heloise, the toothbrush sounds interesting, but I must admit that the idea of anything electric near my TN fills me with horror. I experience everything around my TN as electrical so you'll understand that doesn't sound so great to me!

    I'm going to look into the to Gaba, and thanks for the recommendation for the Bergman video. I don't think I've seen that one so I'm going to have a look. Ta!

  • No, it's a manual toothbrush, Chance. It's an ionic toothbrush and has the opposite charge of plague and that's why it works.

  • No, Heloise, I did get that, it's just that you said it works with an electrical charge type principal. That makes me think of static electricity and the idea of that anywhere near my tooth... brrrr... nasty!

    I'm sure it would do nothing of the kind, but then if anyone had told me my teeth would feel electrical shocks just from changing the temperature of the air on my face, I wouldn't have believed that was possible either!

  • LOL, I just noticed my typo. Guess it will cure the plague as well:)

    I'm sure you'd be quite all right with it. Have you heard of the DermaWand? That would really seriously give you pause but if it cures wrinkles, it's worth it.

  • Damn it, why didn't I spot that?! I could have teased you for at least a fortnight with that one. Let's face it, you can't beat a toothbrush that takes on the plague. Next week a nail file that sorts your leprosy RIGHT out.

    I have seen the Derma Wand but confess I've never paid the slightest bit of attention to it. Is it tragic or wonderful that I am that uncaring about my wrinkles???

  • HaHa, don't worry you will have plenty of other chances to spot my defects.

    Don't worry about the wrinkles, just don't allow any picture-taking and you can live in denial for quite a while.

  • Oh I can live with the photo wrinkles, it's the sightings in full-length mirrors that get to me. The only post-menopausal pregnant woman in human history. The hump back and matronly bosom isn't too great either...

  • Aw, I'm so sorry and it was probably avoidable if you had had decent treatment. It's bad enough not to have knowledgeable professionals but, then, when they stand in the way as well, it really is aggravating. I'm not sure what my next step will be when I run out of Cynomel.

  • Yeah, I suspect it's been going on a long time. And I was assured I was normal.

    I don't know all the meds - I find all the permutations a minefield!! - what is Cynomel? Not something you are getting from the NHS, I'll wager!

  • Sorry I didn't see this, Chance. Cynomel is the T3 we buy from Mexico. They can't use the patent name "cytomel" so they changed one letter. They seem to be running out of production. I wonder how many people on this forum decided to order from them and used up all the stock. I hope they get back in business. The price was so reasonable. A prescription for a name brand would be 8 times the price.

  • Oh poor you. I can't think of anything worse than finding meds that work for you and then the rug gets pulled when they stop production. Here's hoping it pans out okay. X

  • Heloise

    i sure wish genetics was only 20% of the problem because it must be far higher for my husband to then pass it on for

    Our daughter and all 4 grandaughters to have developed Hashimotos and they all got diagnosed with TSH of 2.9 and free t4 of 12

    it so far skipped our other daughter but hit her daughter with Hashis and Coeliac

    Equally thyroid tests will never tell the full story

    my husband was in myxodeama madness yet his TSH was only 2.9 and his free t4 19 (12-24) his thyroid antibodies were so sky high they were off the scale

    Its only thanks to a brilliant Prof and clinical diagnosis skills so lacking today that he is alive and well

    One day maybe scientists will bother to research families like ours to discover why the genetic inheritance has strengthened instead of weakened since i am fit and well and it was only his father who had RA age 60

  • Wow this is amazing site I have struggled with all these symptoms for over 7 yes and because I had hysterectomy at 45 was told it was menopause I also have degenerative disk disease I am on gabapentin I seen a locum on holidays and he said my thyroid gland was swollen went back for results and told it was normal then given meds for vitamin d deficiency and vitamin k I am also aenemic and despite being at slimming world keep putting weight on I get so tired and I also have tremor in my hands my sister had problems too so fed up with it but am back to docs tomorrow and going to demand they tell results x

  • Well Armaan, as spam goes that's pretty spectacular...

  • Chancery, I've deleted the spam. If you spot any in future would you please report it by using the v down arrow and selecting Report :)

  • Ah, thank you, Clutter. When it showed up I realised I didn't have a clue how to contact a moderator. I was hoping one of you would fall over it!

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