Just a quick mention.... I was diagnosed in 2011 and didn't like the thought of life on med, so I tried to fix what I thought was the problem....stress, poor diet etc... anyway in 2012 my T4, T3 were back in range (yippee I thought)....just the TSH...so a bit longer and might be fixed.....at this point I did have antibodies (first time checked for) at TPO ab 200-ish. Now a year later (hoping to be better or cured) the latest results were shocking...TSH >100 wayyyyy beyond...low T4, ok T3....antibodies over 2000....OMG!!
I had tried the theory of Selenium (watch that one for toxicity), vit c....multivit....meat, veg etc and whatever happened last year to get scores back in range..... I have undone or it was natural progression in the disease and everyone is right...can't be fixed.
Anyway.......started Levo, as it was scary to risk not going on Levo....strong hypo symptoms of potentially deadly nature have now forced me onto this famous 'hormone'.....I am not one to sulk....but humph!!
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storm
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Thanks Grey, indeed I had to try...and came close I feel, although I don't know for sure as limited tests were done inbetween.
I am stuck in the wrong mindset...dread of med for life, I appreciate there are people worse off
I mentioned several times to the Docs before about alternatives, it was a short no, however, if I get problems on synthetic, they will at least see I tried it.
I see others attempting natural approaches, so wanted to confirm what happened to me...and like I say, my T4 and T3 were back in range last year and whilst some say Hashi's goes up and down, it was a fluke if I managed to be tested at the right time, lol.
Clearly if I decide to try after any substantial time on Levo or alternative, that would be another experiment....but would say to people, maybe the high TSH prevented healing in the inflamed area (on top of damage by antibodies and original cause that is), so possibly don't go with the 'healing glutathione theory' whilst TSH is high....just my understanding and not proven, despite internet claims.
If anyone does heal the glutathione and rid antibodies, please let us know
I'm afraid I don't get this dread of meds for life when it comes to levo et al. It's isn't a 'med' in the strict sense of the term. It is a hormone. Hormones don't have side effects.- unless you take too much. Hormones are necessary for life. Why be afraid of them?
I think I defo have a psychological problem firstly with the failing body and then relying on a synthetic. I know it doesn't make sense when you take vitamins etc (for which I only try intermittently).
Then of course, it is the understanding of people (such as on here) that encounter issues or don't feel better.
I just think I partially believe the body should heal itself, there is so much hype on the internet that gets your hopes up...saying they can cure it...large doses of Iodine to flush halogens sounds great...but I didn't go with that one, lol. Repairing glutathione made sense on reading, as I did have years of stress etc, sounded great, maybe it would work on some cases. Selenium to lower antibodies, there are citations (think you call them) claiming it worked to a degree....ahhh yes but not the way I did it obviously. It didn't say take Levo first, on my initial readings.
I will get over my resentment of the whole situation in time.....having taken the first tablet, that's the first hang-up faced, lol........but I still wish someone will solidly come up with a nice little cure. X
I think it gets worse the more you read online, the trouble is we have a little logic and this is 21st century, all sorts of things medical and technical have been achieved (in general)....yet despite lots of clinical trials and admittedly more in the states, some very descriptive explanations of processes in the body too.....they can't clear this thyroid matter up???? Often bones can mend, sometimes need assistance...but genes...antibodies, I don't believe for one minute this can't be rectified Xx
Hi Grey, I am another Levo-fearer so am wondering what you mean by by "hormones don't have side effects" as that's the very reason I am worried about taking it? I am particularly concerned about more weight gain and hair loss so are you saying this wouldn't occur unless the dosage is too high? Thanks x
Weight gain and hair loss are more likely to occur if the dose is too low. We need to have just the right amount of any hormone. But they are natural substance that a healthy body makes for itself, and that the body needs to live, so how can they have side-effects? If they did, there'd be no such thing as a healthy person.
When people have problems with levo it's usually for one of two reasons:
1) They are allergic to one of the fillers in the tablet - but that has nothing to do with the hormone itself.
2) Their bodies are unable to convert T4 (levo, thyroxine), a storage hormone, into the active hormone T3. Then you might have weight gain and hair loss because you are still hypo - i.e. not getting the hormone you need to live. But it has nothing to do with the hormone itself, just lack of it.
In those two circumstances, there are alternatives that the person can try - other brands of thyroxine if it's the fillers; synthetic T3 or NDT if it's a convertion problem.
But whatever happens, it isn't the hormone Thyroxine (T4) itself that causes hair loss or weight gain if taken in the right amount.
However, the main problem is that doctors are reluctant to give the patient the right amount. Doctors are terrified of hormones, they don't understand them, they think they act like aspirin so the less you take, the better it is. This is not true. What should happen is that the doctor starts you on a low dose - 25/50 mcg - then after six weeks tests you to see where you are, then increases the dose by 25 mcg. And the process is repeated until ALL symptoms have disappeared, meaning that you are on the right dose for you. This is the ideale treatment. But in order to get this level of care, you might have to beat your doctor round the head with a cricket bat! lol Don't worry, we're all here if you need any help.
Thanks for that explanation-I didn't realise that. My problem is I really couldn't cope with any more hair loss/thinning so have up till now not taken the Levo. From what I've read, your hair never really goes back to normal and that risk is a very big one to me.
I have considered going to see Dr Skinner but worry that he might just start me off on Levo too! I just don't know what to do for the best x
Well, I'm afraid I don't have any good news for you on the hair front personally, but I have heard of people who get all their hair back. Mary Shomon for one. But for goodness sake! It's only hair. What is hair compared to all the rest. Do you know what is going to happen to you if you don't take the hormone you need? Irrepairable damage will be done all over your body. And if you don't take that hormone, there is absolutely no chance that your hair will recover. This isn't just going to go away, you know. You can't just shut your eyes and make it disappear! lol
I believe that Dr Skinner does start everyone off on levo - although I have never seen him myself - perhaps that is because it is the easiest one to obtain. But perhaps if you told him about your fears for your hair he would start you off on NDT. I don't know.
But other things can affect the hair, you know. Have you had your B12 and iron/ferretin tested? They are very important for hair.
You've hit the nail on the head-I am kind of just shelving the whole thing and hoping it will go away! I know it's only hair but I am lucky in that my hair and weight problems are my worst symptoms. I know this could change at any time but for the moment I'm just scared of upsetting the apple cart and making myself worse. I know I sound like a wuss and my problems are nowhere near as bad as other people's but I feel fine and am really worried about taking something that has a chance of making me feel worse!
Yes I've had B12, Vit D and ferritin levels tested. Everything was fine except my iron which was off the scale funnily enough as I'd convinced myself it was low!
Precisely Which is what I meant...I know it doesn't make sense, I think it is that thing about needing to for life versus temporarily taking something, getting better and coming off it. I've never been great at taking any meds (I know we have mentioned hormone)....like many on here, it is just the state of mind...disappointed at having a body part not working...ever again
......auto-immune illness starts with an unhealthy gut. I'm sure that after your research you are aware of this as you sound informed. I have Crohns and Hashimotos was diagnosed some 30 years later ...so have learnt a bit on the way. The doctors here in Crete - prescribed T4 when my anti-bodies were through the roof - to support the thyroid. That was how I thought about it at the time - I am supporting the thyroid. A positive thought. I continue to learn from the very knowledgeable people on this site and as a result have improved my health.
How is your VitD ? - people with auto-immune/chronic illness invariably have low D. Also B12 - how is that ? A multi Vit does not do the business.
Best to support the thyroid and its complexities - so that you do NOT end up with other body parts not working - as mentioned in your post above. Think of it all as a journey of discovery and improvement. Nobody is perfect.....
Hi Marz, thank you so much. I am learning...but have also been frustrated and confused I have realised that for some time, due to circumstances I was living on grain, bread, cereal etc as my finances were so limited. I have only touched on trying to go gluten free...and failed so far, but need to find alternatives that are palatable, but also as I do get a little strange if not eating the things that I have adopted to avoid migraine etc...so bread or toast was the only thing that helped that....oh dear!
It does help me the way you have phrased that....to support the thyroid, it was the latest results and 10 times antibodies since last year that has made me start the levo....it's been two days at 25mcg and I have had some weird effects so far, but must stick with it.
Three times I demanded vit D test, they failed to do it, this time the doctors said they couldn't as it needs to be in lab in 10 mins...I am tested at docs you see.
B12 is ok, I shall try to get it up though, whilst I am absorbing.
I have been 'ill' for many years.....not sure what as it was thought CFS/M.E. but not proven....but definitelty anxiety, agoraphobia, panic etc, so was always exhausted....yes blood tests showed as fine for thyroid in this time.
Thanks so much and likewise, well wishes you you X
I feel very similar to you 'Storm'. I found out I had a slight thyroid issue Sept.2011 with a slightly over the range (which was an out of date range) TSH result and middle of the range FT3 and low in the range FT4. I had a variety of symptoms for about 17 years but symptoms got worse over the last 4 years. I started taking 25mg Levothyroxine from June 28 2012 (also my last day of full time teaching), went to England for the summer and tried to eat mostly healthy organic food. I also got some organic liquorice sweets and liquorice infusion (as liquorice is supposed to support the adrenals and I have symptoms of adrenal fatigue and apparently it often goes with hypothyroidism). Later I read that liquorice is not good for Hashimoto's. My antibodies TPO before Levothyroxine: 138.500 (1.5.12); 178,500 (16.6.12) My TPO is continuing to go up after 25 mg Levothyroxine - 256.000 (13.9.12); 961.87 (25.11.12) and after 50mg is beginning to go down 486.62 (5.3.13). My Anti-TG before Levothyroxine 498.6 (17.6.12) and after levothyroxine has gone down to 73.3 (25.11.12) 50mg Levothyroxine continued to go down 51.57 (5.3.13). The anti-bodies seem to fluctuate. Maybe because I had liquorice tea and sweets (July to Sept.'12) in the hope it would make my adrenals healthy, therefore helping the conversion of T4 to T3 but later read it's not good for Hashimoto's. There's so much conflicting and out of date information on the internet that I probably did the wrong thing which may have caused the antibodies to rise from 256 to 961. I stopped the liquorice and also gave up dairy then my antibodies went down to 486. I read somewhere that it's good to get onto the Levothyroxine as it can help to lower the antibodies whilst also supporting your body but you should continue to use all the healthy natural methods to lower your antibodies. I'm glad I started on a low dose. Although I don't really feel better or worse for it. I'm still praying for a complete cure. Anyone else reading that comment are probably saying "Dream on" now but why not dream on. I am. If I find a cure and a way of getting off the Leave-O-Thyroxine I will let you know. PS I also feel a bit of a hypocrite because I feel okay about taking health supplements but very much dislike and resent taking the Levothyroxine. Best of luck to you xxx thyroid.about.com/od/hypoth... Hope this link helps.
Ahhhh Soldieress, this is very much similar in some ways. Thank you for replying too!
My view was that the auto immune continues etc, so wanted to try to heal that....indeed, people might think we are mad, lol...it was only recently I picked up on the TSH apparently gets deeper into the cells causing worse inflammation, so this helped me decide to take levo...I do hate it, but I have had some scary symptoms lately, worse than the past couple of years and whilst I describe as deathly....it wasn't until the doctor was so shocked and clarified I might be right, he said I shouldn't be walking,....i said I'm not...he expected me in a heap somewhere....oops! I have literally been from bed to settee daily for months really...
I looked at the nutri contents and spotted licorice in them....and I had read it firstly as good for adrenal and then later as bad for thyroid (at this minute I can't remember why) however there is this theory about TH1 and TH2 dominance....and different substances raise the action in one or the other and they need to be balanced...however, saying that...I have doubts it would work. If selenium is meant to work and didn't with me (unmedicated that was) then I doubt it is as simple as getting the right nutrients. The combinations need to be right, in general....and I toyed with basic multivits to try to get some of most things....I am gutted I went back to near normal last year, well from what it was........now worse than ever. TPOab 2000 jumped up from 200 (ish) now has me very worried too much damage has been done. For some reason the Tg wasn't marked...I assumed I didn't have any...but it may have been they weren't done.
The only reading on this site where someone has come close to getting off leavo (ha ha)....was by taking nutrithyroid....and nutri complex...again the complex has stuff in it that isn't meant to help thyroid (licorice and L carnitine, I think is for graves...stops thyroid..dohhh) altho that may be disputed, as might be a reason those are in it. The thyroid version (cow gland) sounds scary...whilst it sounds great if it gets you off levo...ermmmm you can't get off glandulars and how long will you be able to get it....and allegedly you get the shakes and can go hyper fast... I was almost tempted though
Many thanks for the link....I shall have a perusal later.......and yes, I am hoping the cure is pending....well this decade would be nice.
Hiya, well this is all the things you read and debate about, when in turmoil, lol...I don't wish to sound daft, I think desperate, yes...lol, I just wanted to make sure there wasn't something that I could start and come off later, but that might be hopeful, although others report various successes, at least partially
storm, I've suggested selenium to others and found this on the STTM website under Selenium:
How much selenium can I take? Can it reduce antibodies? The vast majority of experts agree that a good starting therapeutic dose of 200 micrograms (mcg) has positive effects on both the thyroid and the immune system. At this dose, selenium significantly reduces TPO and TgAb antibodies; up to 55-86% and 35-92% respectively. Attainment of euthyroid status (after long term therapeutic dosing) has also been reported. It is important to note that selenium supplementation, even in those with a sufficient selenium level, will still enhance immune and thyroid response. Research data shows that a dose of less than 200mcg is not sufficient and will heighten iodine deficiency, goiter, and AIT attacks.
Hi Heloise, it does seem to be all over the web and also clinical trials took place with some reported success. However I was not taking Levo whilst trying it, so maybe that doesn't work. My antibodies have gone up ten fold in a year, whilst taking supplements and/or brazil nuts. I noted the connection between iodine and selenium, so tried to balance a bit of both. I was also aware of selenosis. Some strange symptoms started with me, that made me worried and doctors basically said give up, stop taking iodine and selenium, just do normal diet...hmmmm.
I am newly on Levo, very muddled right now as what to do...but if I start to feel better, may restart the brazil nuts and try to keep watch on iodine. I haven't done any tests as such, to check levels...it's all down to private tests and funding, as doc won't do extra tests.
My nail beds went white and white/red striped, so one doc thought it may be selenium toxicity, but i defo had iodine in diet and supplements at same time. This was literally a few nuts, as they are high in selenium......I tried supplements with selenium, but likely wrong type of selenium.
I read about selenium when my son became hyper while in his twenties working hard on a difficult doctorate. He was on methimazole and a beta blocker for a while, probably a year or two. He did take selenium. He is now in his thirties and off everything. He seems to be doing well and has no symptoms of hyperthyroid. I don't know if he had antibodies, though.
Hmmm, so stress having the opposite effect ie hyper. Selenium is supposed to help convert to T3, which might be where it works best. i am just astounded as I had hoped my TPOab at 200 ish last year would be lowered, but nope, a year later and something has gone mega wrong. TSH was 8 and the rest normal a year ago (6 months before it was very hypo) now I am severely malfunctioning, lol. I think it will take a lot to lower my TPOab 2000+ as it is now, goodness knows how much damage I have in the cells now
I think the important thing with me this minute is adapt...if that happens to the Levo...see how the converting goes and scores in general...then maybe try again. The other theories of glutathione and precursors or TH1 or TH2 dominance are interesting reads as well. This is why I can't believe a cure hasn't been found 100%......it seems (especially in the states) that people are working on this....don't know what the UK is doing
There are a lot of gluten free offerings now that so many need to stop indulging. I know it's difficult to stop. Do you have high protein bread in the UK made from
Have you thought about trying LDN? low dose naltrexone
I heard about this a few years ago and I saw it mentioned for thyroid antibodies. It originally was used to help alcoholics in a 50 mg. dose but they discovered that in a low dose it seemed to work on MS multiple sclerosis patients. So now it is used for autoimmune of any sort I guess. I thought it was available without prescription in Canada but I'm not sure what the status is now. There are a few people here that are trying it.
I haven't seen high protein bread. I have 'tried' some gluten free bread and it is unpalatable, whichever way you try it
I briefly read something about LDN but wasn't clear on it, I will have to look that up too. It seemed all the things I was looking up sounded to have bad side effects and I may be playing with something whilst too low a function. It is so hard to know what to do, but I will keep looking into all these things
UK is a pain, tries to stop people helping themselves I feel, but more so, the Doctor's are against everything, I know they can't get involved with alternative medicine as such, but you'd think they'd go home and try to understand what we are telling them.
It will definitely be helpful if people trying these things report back with success, I know we are all different and it is a learning process. If we can prevent further conditions, that will help too
LDN is supposed to be very safe. It's been used since the 80's I believe.
You know there is hope for a cure that you could give a go. If you could relieve the stress that accumulates in the hypothalamus, your body would be more free to resolve and heal. Have you ever heard of the relaxation response? There are brainwave tapes that can help induce it. Or how about acupuncture?
I agree, I'd certainly try everything I could think of to help myself but you are losing part of your gland with every attack and you have to stop those.
I will hopefully get a bit of energy to research and try more. I am already fed up with strange symptoms, I think I felt better off the Levo and it's only been three days on low dose...lol, yes I defo need relaxation.
I had schiatzsu (can't spell it) few years back....I remember wondering if that triggered an imbalance, before the thyroid packed up. It wasn't pleasant treatment anyway, I gave up after a few sessions, it was expensive.
I know that I am worried about how much damage already, I really didn't expect it to get worse, I thought it had been getting better, all by itself...until now.
Ahhh, thank you, it wasn't great sleep, but still, I am shifting my pattern again, as was back to front and sleeping by day, lol
I was making lots of stews and using a lovely 'best' gravy mix.....then I read soy. I also picked rice cereal instead of wheat....I am a bit confused over the starch thing as some say it's fine, some say avoid...including rice, but also potato....aaargh, haha.
Many thanks for this link too.....lots of reading to do, so hard to know who is right and who is wrong btween doctors etc, I can pick one and think yayyyy that's it, bingo.....then another says nooooooooo, it's like this. This is also part of why I gave in to start Levo, as it is a minefield and I tried for 18 months....hmmm, but try might not have been try everything.
I was stressed for years and diet went to minimal....like sandwiches mainly, it makes sense. Then again I gained some cherry angiomas which say bromine poisoning...except it's not meant to be in bread any more, banned...hmmm
Yes, enough reading for a while. We like Dr. Lowe because he is hypo and on T3 only which resonates with many others. He follows science and research.
I think you are going to feel better on levo at least for a while but which you would go on Armour or Erfa instead. More chances for the right ingredients.
Bromines are everywhere....lots in your car even and I'm sure a big problem displacing iodine in same receptors.
I use brown rice products since I love pasta but even that is said to have lots of toxins because of how it is grown. If you can get organic there, would be better.
All right, I wish you well also and will look for your GREAT improvement which I know is coming.
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x
but why not dream on. I am. If I find a cure and a way of getting off the Leave-O-Thyroxine I will let you know. PS I also feel a bit of a hypocrite because I feel okay about taking health supplements but very much dislike and resent taking the Levothyroxine. Best of luck to you xxx 
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Endocrinologist wants to reduce by levo by 50mcg and double my T3... advice please
