Hashimoto's and diet: Lets assume I have Hashi... - Thyroid UK

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Hashimoto's and diet

Justiina profile image
17 Replies

Lets assume I have Hashi because of my high antibodies. Doctor I saw last week could not confirm it, said that many healthy people do have the thyroglobulin high, but he said that since I am strongly reacting to things and have b12 deficiency it is very clear I do have autoimmune disease. What it is , he did not comment about. We will now work with b12 first .

Anyways about the diet. I have been gluten free for years, except I eat pure oats. I just learned that it is also cross reaction that can cause inflammation. And what do I learn? Person with hashimoto should avoid milk, oat, corn and rice.

Guess what...

I have been highly intolerant to milk, rice and corn for years. I assume I have allergies. Rice causes me super bad hives, I can be dizzy, sleepy and have really bad diarrhea with really painful cramps.

Milk, that little b-stard has caused me issues for years, what does it not cause? Just week ago I was feeling ok, eating chocolate and what happens, I get really ill, temp dropping to 35.5, being barely able to sleep , feeling weak and nauseous, having rash, flu-ish symptoms , just name it.

Corn, that just cannot digest, whenever I try gluten free pasta made from corn, I start to feel heavy, full and just awful. Hideous.

Oat. Well that is a tricky since I have no idea with what I could replace my morning oat meal, since after cleaning up everything else from my diet I am a big question mark what to eat. I do feel oat can be bad for me as well, since I just dont feel so good after oat meal.

Then I know there are tons of food you should avoid, like millet and almond but some say it only concerns raw. Well I do cook my millet, I dont feel any bad reaction to it. Almond, well that I use as flours to make pies and pan cakes so basically it is not raw :O

Well I am just one big question mark, am I just unfortunate person with high thyroglobulin and tons of symptoms intolerant to these foods without it being hashimoto or is there sort of very solid link between these?

I would really appreciate any opinion.

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Justiina
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greygoose profile image
greygoose

You eat millet??? I've never met anyone before that ate millet, apart form my grandmother's canary. How do you eat it?

Seriously, though, there you're talking about goitrogens. And millet is an exception to all the rules! It's goitrogenic qualities are stronger when it's cooked! lol Funny that.

But, the great thing about goitrogens is... not all hypos are sensitive to all goitrogens. But if you are sensitive to one of them - and there's a very long list - cooking isn't going to help.

The other thing about goitrogens is that a lot of people talk a lot of rubbish about them.

You do not have to give them all up, or cook them all, or anything like that. They are not sneakily affecting your thyroid hormone replacement. But what they are doing is affecting - possibly - your thyroid gland if you still rely on your gland for some of your hormone. They impede the uptake of iodine by the gland IN SOME PEOPLE. So, the best way to know if any of them are having an effect on you is to do an elimination diet. Cut them all out for a couple of weeks. Then reintroduce them one by one. See how you feel. Monitor your reactions constantly. Are you feeling better in any way? Or are you feeling worse? Then you'll know what is OK for you and what isn't.

You know that milk is bad for you, so you've cut it out. Great. Milk doesn't agree with me, either, makes me itch! So does yoghurt. But I can eat cheese and cream and butter with no ill effects. So, I eat them. I cannot see the point of cutting stuff out of your diet if it isn't going to make you feel better. You're right! What does one eat? Between what is 'bad' for us and what we Don't like, doesn't leave much, does it.

Corn is also a goitrogen. And bad news all round, in my opinion - especially if it's GM! Haven't been able to eat any form for years, and not going to try. But I've never had any problem with oats, and I have Hashi's, too. What affects one doesn't necessarily affect another. But I have no idea what you can replace it with. Have you tried quinoa? Although I can't really imagine it with maple syrup for breakfast...

For three miserable months I gave up gluten, dairy and sugar. And I felt absolutely no better for it. I may have lost a couple of pounds, but it really wasn't Worth the terminal nutritional boredom I suffered! So, I now eat gluten, and sometimes a little sugar.

You Don't have to be Hashi's to react badly to foods - be they goitrogenic or otherwise. Any hypo can have a bad effect when eating cabbage or strawberries. But no-one is necessarily going to. You might, you might not. So, find out for yourself if it's doing you any good or if it isn't. And Don't listen to people that say you HAVE to give up so-and-so BECASUE you're Hashi's, or because you're hypo. It doesn't work that way. :)

PS The only exception to the above is soy. And soy should be avoided at all times and in all forms - whether you're hypo/Hashi's or whatever.

Justiina profile image
Justiina in reply to greygoose

Hehee , I have millet like quinoa, cooked the same way and also flakes that you could make porridge , but I use them in my smoothie sometimes.

Syrup with oatmeal? No, no no :D I eat old fashion porridge made from salt, water and oatmeal, no added sugar. I gave up on sugar years ago and never missed it. I am not sure if it made me any better, but when I had sugar in my diet I kept losing weight. I was able to put up weight cutting off sugar.

Gluten free I have been for years except the pure oat. Going gluten free did help me, but it was so long ago that I cannot remember all, but my first idea was that it might be the reason I had joint pain. It solved the problem and never suffered from achy joints since.

Milk in any form makes me ill if I try to take it more than one bite every here and there. Even probiotics cultured in milk makes me really ill.

This is hard, trying to find the link between things. My diet is sort of limited and top of that I have 0 appetite. Have not had for 15 years. Eating is something I hate big time since at one point everything made me really ill. I would not mind just diarrhea, but being dizzy, barely able to walk and so it is devastating.

I dont enjoy eating at all and swallowing has been hard, now it a bit of ease with b12.

It has been a long battle to put up some weight since I went from 62 kilos to 47.

I cannot seem to figure that pattern out, sometimes I think it is strawberries, sometimes kiwis and then sometimes I eat them without a problem and no rash and then sometimes I have so bad hives that my legs are all swollen , red and so itchy. And that usually happens in the middle of the night so I have to get and moisturize myself and try to fall back asleep again.

The only thing that actually DOES help is finnish blueberry more so bilberry. But it has proven to be super food , reduces inflammation. That seems to do wonder to my stomach and all in all. Never feel healthy, but I feel the effect. Bad side is that I have to go and pick them! I do like it, but in my condition it is hard.

I gave up on soy years ago and it was the only time ever I have had issues with my periods, missed them 3 times before they were back to normal. I linked that to soy.

Tho I do add a bit of soy to my minced meat pie, since there are not many type of cream I could use.

Thanks for your response greygoose, it helps a lot to hear how other people experience stuff. Like you said many people say that you should not eat this and this and this because it definitely will make you hypothyroid or so.

It might be that is just too early days for me to say nothing helps since I am now using B12 which has helped some and it might take time for me to heal. I am just so impatient to find all the answers now, been suffering for too long.

greygoose profile image
greygoose in reply to Justiina

Well, I don’t like quinoa, so I don’t think I'll bother to try millet! lol

I couldn’t eat porridge without sour cream and maple syrup. I’d just give it up altogether. Amazing that you LOST weight when you were eating sugar. Most people find the opposite. I’ve been fat all my life – with the odd Hashi’s hyper swing, when I got slim (sigh). I am losing it rapidly, now, though, on a decent dose of T3. Sugar or no sugar.

I don’t think it’s that hard to find a link. Hashi’s is often caused by gluten (not mine, though). Lots of hypos find dairy a problem. Strawberries are goitrogens but kiwis aren’t. And if they make you swollen, red and itchy then it’s more like an allergy than a goitrogen attack.

I don’t like eating much, either. I put it down to the fact that food was so awful when I was a kid, just after the war, and it put me off for life! School lunches certainly put me off a lot of things. And now I don’t like much at all. I have all sorts of food phobias, which makes me very unpopular in certain quarters (like daughters-in-law and hospitals!). And at home, I never know what to eat, so don’t eat very much at all. If I could live without eating, I’d plump for that.

But maybe it does have something to do with the Hashi’s… I don’t know. Certainly lots of hypos lose their appetites, and go off meat, and all sorts of faddy things. But my appetite improved a bit when I started taking magnesium. Do you think you might need magnesium? Most people do, because the amount we find in our food these days has greatly diminished, and being hypo makes it worse.

I found swallowing difficult at one point, always felt as if there was a lump in my throat. It went away by itself, as did various other symptoms at that time, so maybe that was due to variations in antibody levels. Who knows? Nobody bothers to test them most of the time. I’ve only had mine tested once, and that was when I was 55. They were high. Goodness knows what they are now. But as they’ve managed to destroy my thyroid now, it probably doesn’t matter.

Being dizzy and hardly able to walk, does sound like B12 deficiency. Have you found that's improved since you started taking it? And if you’re taking B12, it might be a good idea to take a good B complex with it, so that the Bs stay balanced. They all work together. And by good, I mean one with methylfolate in it, rather than folic acid. And no soy oil!

Soy is a double problem – well, it’s multiple problems, but especially two for hypos. A) it impedes the uptake of iodine as I’ve already mentioned. And B) it impedes the uptake of hormone by the cells. So, it really does make you more hypo.

I know what you mean about nothing helping. I was like that for years. But when I started to address my nutritional deficiencies – and I had a lot! – I started to feel better. Vit D with magnesium, vit K2, zinc and boron. Vit B12 with a B complex. Vit E, vit A, etc etc etc. I take a ton of supplements – all carefully researched first – it’s a drag, but it’s worth it. However, I would advise you to get them tested, first. Some of them can be toxic if you over-dose.

Justiina profile image
Justiina in reply to greygoose

You could try millet, it tastes different. Quinoa in my taste is a bit muddy lol, but millet is sweet. Worth to try!

About magnesium, yeah to me it seems to be very important, realized it today when feeling awful and spraying some oil, it helps immediately.

Fortunately I seem to react very well magnesium oil, I dont want to stress my poor gut more with pills. I always start every supp with very low dosage. I cut the pills in 4 pieces and try I how I react then increasing to half and 3/4 and then full.

I also react to moderately low dosages of B12 very fast. I consider myself fortunate since it has changed somethings dramatically pretty fast. It completely cleared off my brain fog, in few days as well irritation of my gut was gone in 2 days.

B12 also made my legs more stable. I fell 8 times last year and injured myself, now I can walk normally.

It also gives me better body temp, so now I dont have to sleep clothes on under two blankets, and that is so nice!

I can feel the good effect with sublingual nuggets and the spray starting from 500 mcg, less than that I feel nothing and without B12 the tiredness comes back in few days.

My doctor was hopeful that B12 could be the answer to all of my issues, of course with other vitamins and proper diet. He ordered me another blood test to see whether my serum levels have gone up at all. He said that we will continue from there and then we must see whether there are other issues too, which could be Hashimotos.

He does not know much about it, but at least he promised me to seek information and see how we will proceed. I do trust him, since he was the one who pointed out that even tho my b12 levels are in range they are low and the reference range for lab should be higher. He also said that some people just dont feel good on low levels and the most important factor is how I feel with b12 than any blood test.

Sorry to hear you have the same with eating, it sucks. Food and eating seems to have such a big role in social events. My family sort of gets it now, at first they felt really uncomfortable around me when I was just sitting in the table drinking water when they have full plates of food.

greygoose profile image
greygoose in reply to Justiina

lol I swear some people who used to invite me to dinner (such as my ex d-i-l and my ex husband) used to deliberately serve up things they knew I wouldn't eat! Such as rare steak and green beans. Ugh! My son invites me to lunch, and when I arrive he says, oh, by the way, I marinaded the spare ribs in soy sauce! And he knows damn well I react violently to soy sauce!!! So, I'm sitting there with a plate of dry rice - can't even have the gravy - whilst the rest of them are pigging out on pig! The only one that makes an effort is my daughter. And even she gets it wrong sometimes. I pretend not to mind because, after all, it is my fault. Sort of. Sigh.

I agree with your doctor about the B12. In Japan, the lowest end of the range is 500. And anything Under 500 can cause permenant neurological damage. So, I go to my doctor, and it's 350, and he says 'perfect!' But I'm losing the use of my right arm! But, of course, that has nothing to do with anything. Once I start supplementing for myself, the arm gets better, and is now perfectly operational. And B12 was the only one he would test for, so goodness knows what everything else was like. I just worked it out for myself.

But I stil think I'll pass on the millet. Don't think I could even buy it here in France. Except in a pet shop, of course! lol

Justiina profile image
Justiina in reply to greygoose

:D yeah millet might be more suitable for guinea pigs!

I have told my family and friends that please don't worry about what to cook. Even I cannot say what is good for me or not, so some days I might eat something and some days not, when trying to figure out what to eat and not.

May I ask how do you react to soy?

My b12 was 342, but I had been on b12 for months already, tho low dosage but still.

I love how b12 is for me, except I dont only react positive, negative too, which might be lack of something else or something else is wrong as well, for example maybe hashi.

I went to run errands this morning and it was awful. Walking to bank from my car was so difficult and in the bank I just wanted to lay down since I felt my legs are wobbly and I was short of breath after walking 100 meters. Same happened again when going to pick up my eye glasses and walking 200 meters.

I cannot figure out what triggers it since for example last week when I went to doctor I was almost fine, I had been off of b12 for a week. Only on multi, magnesium and zinc. But I was super tired when got back home as I am now, just feeling so bad :/

Walking from room to another can make me gasp for air like I would be really old and super ill. I know b12 requires potassium, but since I am a bit scared of new supplements I have taken potassium as foot bath since it seems to work other people.

I dont know what the **** is wrong with me. B12 makes me feel mentally so much better, but my body is not following. I know some of it is because I learned to be anxious and nervous, for years I was told it is panic attacks. I try to fight and say no, it is not. Since it did not start as panic attack. I started as heavy nauseousness which eventually lead to anxiety since nobody helped me, but it took 4 years before I started to be nervous and anxious because I never knew what made me feel so awful.

SSRI-meds made it worse. Was on them for 2 weeks and that was a nightmare.

Anxiousness I have is mostly purely physical, and it can hit me anywhere. And now it is hard to fight against it and start to believe it is not mental that way they made me believe it is.

I did read about b12 that lack of it might cause sorta social phobia since you cannot handle crowds and people. So maybe in my case it just takes time, I dont know.

I am thinking about ordering biocare b plex without b12 and folic acid and then have folate as separate pills as well. I dont even know if I can tolerate folic acid or not.

Oh and I have never ever had any issues with my hair regardless how ill I have been. After I started to take b12 I started to lose hair!!! I have lots of hair so no harm done yet, but it scares me that why now. What is wrong now! Been taking 15 mg zinc for 2 weeks but still losing hair.

I am confused what triggers and what, but I have sorta figured out that I feel most hideous in the morning, heart racing crazy etc since I am missing something.

greygoose profile image
greygoose in reply to Justiina

How do I react to soy… Well, it’s like all the blood drains out of my body… I start to get cold and shaky and sleepy, just want to curl up in a ball and moan! Rock myself and cry because I feel so miserable. My brain shuts down and I can’t think rationally. In other words, like something just robbed me of all my T3! I also used to react like that to pears and walnuts. Corn and strawberries were even worse because I also used to get severe stomach cramps and diarrhea. But now my thyroid’s packed up, I don’t react to those anymore, just any form of soy, even in the tiniest quantities.

If your B12 was 342, you needed about 7000 sublingual daily to bring it up.

I totally disagree with your doctor that healthy people can have high levels of TgAB! They may be healthy to start with, but how long do they stay that way? What were your TPOab like? When I was diagnosed, my TPO was high, but my Tg was much, much higher. And I was far from healthy! I would say you have Hashi’s, end of. I think he’s out of his depth, there, most doctors are when it comes to autoimmunity. It’s good to work on the B12, but not in isolation.

What were your other bloods like? T4/T3? TSH? Iron, vit D, ferritin? They are all important.

I know exactly how you felt this morning, walking to the bank, etc. And then if you have to wait in line, it’s even worse! I refuse to go to the pharmacy and the post office anymore because there are always such long queues, and the staff take their time, having a little chat… Pft! I’m lucky, I’ve got my son-in-law to do all that. I will only go places where I know I can get in and out quickly – and preferably with a trolley, to support me! OK, so now I’m 70, it’s not so bad because people put it down to my age. But when I was younger, it used to get so embarrassing! Weak legs, and out of breath, and so tired! But, all that could be low T3. I’m much better now I have a decent level of t3. You cannot function correctly if you have low levels of T3.

Why did you come off the B12??? Multi vitamins are not much use to someone with true deficiencies – it’s my opinion that they’re not much use to anyone! Except for making money for the manufacturer, because so many people buy them, because they feel they ought to take them, but they don’t quite know why... But I’m a cynic. If you’re taking magnesium and zinc, you should know what your vit D is, because they all work together. Vit D, magnesium, zinc, boron and K2. If one of them is too low, it’s like losing a wheel on your wagon.

You probably get plenty of potassium in your food, I would hesitate to supplement potassium – unless you’re taking water pills – because that can cause an imbalance between potassium and sodium. Have you had those two tested? Doctors usually do those at the drop of a hat, without any encouragement! lol

What B12 needs is other B vitamins because they all work together. Therefore I wouldn’t recommend a B complex without folate, just make sure it’s methylfolate, and that should be sufficient to bring up your folate – unless you’re pregnant!

Once again, I would put the anxiousness and nervousness down to lack of T3. Panic attacks are lack of T3. Or, possibly, if you’ve been hypo for some time without treatment, it could be low cortisol. My anxiety cleared when I started on HC – but you must get tested for that, don’t just take it.

SSRIs will make it worse, because it’s nothing to do with whatever they do, it’s lack of T3 in your brain. It is not ‘mental’ – whatever that means. Most so-called ‘mental problems’ are due to hormonal imbalances, not ‘chemical imbalances in the brain’, personally, I don’t even believe those exist.

Lack of T3 can also turn you into a hermit – did me! You know you can’t handle crowds or people, or social interactions, you might say the wrong thing, do the wrong thing, not understand what people are saying, get lost… a thousand things could go wrong! But you wouldn’t even think about them if you had decent levels of T3.

As to your hair, I can’t answer that one. I don’t know if taking B12 can make you lose your hair. I started losing mine… well, I’ve never had thick hair, and it’s just got thinner and thinner over the years until last year… when it all fell out! In one go. I was washing it and it all came away in my hand. Like taking a wig off! I had an appointment with the doctor that afternoon, and I showed him my bald scalp, and you know what he said? It’s normal at your age!!! Really? Well, why isn’t your waiting room full of bald women? Because they’re all about my age out there, and none of them are bald! But he was an idiot, so I just had to have a hissy fit and get over it.

But I don’t know why it all fell out like that. Maybe because of my nutritional deficiencies, low iron, maybe because I hadn’t taken my T3 for a few months (long story), who knows! Anyway, now that I’m taking a mountain of supplements, and a good dose of T3, it’s growing again. Slowly but surely. I even went to the hair dresser in March! Lol

I really think you ought to get your other nutrients tested – if you’re low in B12, the odds are you’re low in lots of other things. I think you should also get a 24 hour saliva cortisol test. I don’t know how feasible that is, but your doctor sounds co-operative, ask him and see what he says.

Justiina profile image
Justiina in reply to greygoose

Oh my that is a strong reaction :( sort of the same how I have with coffee but not nearly as bad.

First of all, thanks for responding and giving such valuable information!

I have been thinking about upping my b12, but solgar nuggets does not seem to work for me as good as was betteryou b12 spray even though it is just 1250 mcg. i ordered some more, since it is ridiculously expensive over here I need to order stuff :(

Why i was without b12? To test what happens. In a week I lost all the progress made during 2 months on b12. I cannot handle large dosages since I am always so anxious about over doing it and having side-effects.

During the week my temp dropped down to 35.5, did not feeling like eating at all, not even tiny bit and was so freaking tired all day long since I could not sleep. I kept waking up to pee. And got "depressed" again.

About my bloodwork, oh boy, where to start!! Well let me say first that I do take vitamin D in a fish oil, doctor did not worry about it so did not get tested since I am supplementing.

I started my journey back to human being spring 2013. I read Diane Swcharzbein's book ( I never learn to type that).

I learned out adrenal fatigue and ordered a saliva test from Germany, because over here in Finland they dont give a shit about those things. It is a bit different to Genova's saliva test.

SPRING 2013

After getting up 5826 pg/ml (r 1800-14500)

two hours later 3330 pg/ml(r 1300-10300)

five hours later 1578 pg/ml (r 700-5700)

eight hours later 2199 pg/ml (r 600-4700)

twelve hours later 908 pg/ml (r 300-3300)

SPRING 2014 (same range than above)

after getting up 2846 pg/ml

two hours later 2810pg/ml

five hours later 1715 pg/ml

eight hours later 1438 pg/ml

twelve hours later 627 pg/ml

Fall 2015 I did full thyroid panel with cortisol saliva test, result was a bit weird, but it put it under that fact that I had been following proper diet, rested more and started vitamins!

FALL 2014

DHEAS 7.2 ng/ml range 2-23

Morning 7.7 ng/ml range 3.7-9.5

Noon 2.4 ng/ml range 1.2-3.0

evening 1.3 ng/ml range 0.6-1.9

night 0.8 ng/ml range 0.4-1.0

Thyroglobulin 130.4 ng/ml 3-40

Total T4 6.0 ug/dl 5-10.8

Free T4 1.6 ng/dl 0.7-2.5

Free T3 3.0 pg/ml 2.5-6.5

TSH 1.8 µU/ml 0.5-3.0

TPO in range.

rt3 19ng/dl 10-24

Iodine 17.43 µg/g 100-1100

Selenium 32.11 µg/g 27-175

With results I got 5 papers of information from laboratory. Mainly saying low iodine, selenium and poor rt3 ratio.

Blood tests January 2015

TSH 2.2 mU/l range 0.3-4.5

T4 free 17 pmol/l range 10-21

T3 free 5.9 pmol/l range 3.5 -6.5

Everything else, tons of blood taken and test done perfectly in range. On a paper I am super healthy.

Doctor did not bother to test ferritin, only haemoglobin which was 148 g/l,

She did not bother to take corsol either since my latest saliva test had been so good.

Been seeing young male doctor from same place. i do trust those doctors, but they are a bit clueless maybe because over here in Finland these are not approved things. He said there is no issues if I take some potassium since my serum level was ok. But I do worry if my adrenals are failing then potassium will mess up my natrium big time.

When it comes to T3, I have no clue how my rt3 had changed when tested second time, since it is not tested over here.

The male doctor I am seeing now did not completely turn down the idea of Hashimoto. HE ordered me a new b12 blood test, which I can go and take anytime I want to. He said that if I am not seeing much improvement nor are my levels then we need to sit down again and see what is going on. BUT over here you cannot get T3 anymore. So I am in dead end with it. Also it is struggle to get HC.

Few doctors have been sued for prescribing t3 and treating patients with Hashimoto's and other thyroid issues, since they consider t3 is poison. Apparently because some patients have taken over dosage, but no evidence it was doctors mistake! Or were they people who ordered it online for other reason for example to lose weight or use it as "doping".

It has now been on process for 2 years. Those who were on t3 just before doctors started to sue each other might be able to get t3 , but not new patients.

So some of patients are been forced to quit t3 , with what they gained back their ability to work and be functional. Instead they are treated with anti-depressants, PPI's and pain killers. Doh!

I don't know where my illness started but it was a combo of tons of antibiotics, birth control pills, yersiniosis, blood poisoning and second knee surgery with block anesthesia. After those I started to feel ill.

I was given tons of PPI's which made it worse, naturally.

I also made a stool test, where I am missing e.coli , wont be treated since you might get too much e.coli from those pills.

Also I am missing one bacteria almost completely. Dont know how to fix that. My doctor said that oh well you have had antibiotics, that is why you are lacking that bacteria. I looked at him and said, yes I have antibiotics, tons of them... 20 years ago!!! He went a bit quiet. But could not say much about it. Down side is I am very sensitive to probiotics as well.

So yes, I have had low cortisol, I have had severe rt3 ratio. I have sorta low b12 and missing some good guys from my tummy.

Only if I had a proper doctor that are allowed to treat their patients. I am currently trying to get healthy enough to travel to another country to get help. I cannot live like this.

Doctor at public healthcare told me that I am the most healthiest person he has seen for a while, with such a perfect cholesterol and all. He said that I have no worries. When I asked why i cannot walk normally he looked at me and said to stop being so critical towards myself. That I am just asking too much from myself.

I asked why such a healthy person cannot even ski more than 3 kilometers in a week and be bed bound a week after that, he said that oh if you can ski 3 kilometers/week then you are super healthy. What a moron...

I asked him why my uncle who is 65 and he has had heart bypass done can ski 1000 kilometers a year, which makes 70 kilometers a month, and I am half his age and can only do 3. He told me stop comparing myself to other people. He started to ask about my childhood and my parents and all that had nothing to do with my current health. I was crying all the time, because I was so upset and felt so betrayed, he took it as I am depressed.

So he diagnosed me being over critical. That is what he wrote down to my papers. Never heard about such an illness. Hurray public healthcare doctors. He refused to test me more and told me that I have spent for nothing testing adrenal glands and thyroid panel. He said by b12 levels are perfect and using b12 does not work.

He said all vitamins and stuff are humbug when I asked to get vitamin D test, and stuff in public healthcare since I cannot afford to go to private practice anymore.

And no he was not old grumpy guy. He was younger than I am.

I am so sorry about long post and tons of numbers.

I have read some of your other postings with all helpful links. I find it so amazing that you have energy to share your experience. It helps a lot, just to know that people do go through the same thing, makes you feel less lonely. Friends and family expect me to get back healthy over night starting b12 and stuff, it is hard to explain that it does not work that way, that there might be other issues as well.

Thank you again :)

greygoose profile image
greygoose in reply to Justiina

A similar thing just happened to me. I was without my magnesium for a week. And I lost all the remarkable progress I had made with that. This weekend I felt terrible, and couldn’t go out to lunch as I usually do on Sunday, just huddled in my bed and watched bad TV. I was fatigued and lethargic, mildly depressed and anxious. And constipated!!! And, big sign for me that something is wrong, my mind started going back over all the injustices that have been done to me, and all the nasty things that have been said to me, since I was a small child!!! That really does tell me that I’m sinking fast. I used to associate that with low T3 in the brain – I had the same thing when I gave up smoking. But my dose of T3 stayed the same. So, is there some connection between magnesium and T3 supply to the brain? I don’t know.

Why are you worried about large doses of B12? You can’t over-dose on B12, because it’s water-soluble – excess is excreted – and I don’t know about any side-effects. How much are you taking? I think you’d have to take an awful lot to get side-effects – but if you do, you just stop taking it.

Have a read of this, it also talks about B12 and potassium :

vitamins.lovetoknow.com/Sid...

I didn’t realise you lived in Finland, I somehow supposed you lived in the US, don’t know why. Sounds as if thyroid things are worse there than they are in the UK.

Your cortisol tests are still ‘in range’ but seem to be getting lower. I wouldn’t say you were super healthy on paper. Although your DHEA seems fine. You seem to be going up and down with your thyroid – TSH a bit high, FT4 and FT3 a bit low in January. High enough and low enough to give you symptoms but not high enough or low enough to interest a doctor! But that would be due to you having Hashi’s. I imagine that in Finland, like most other countries, they don’t understand Hashi’s and antibodies.

Personally, I wouldn’t recommend taking potassium. Why do you want to?

At the moment, you don’t need T3 or HC. First you need to get onto Levo and that might suit you just fine. The problem is, getting them to understand that you need it, and that it really is advisable to start Hashi’s people on it as soon as possible to prevent further damage.

Yes, I understand the issue with T3. We have the same thing in France with NDT and HGH. Stupid people do stupid things and the rest of us suffer! But authorities are too stupid to understand the difference between being responsible with hormones and being stupid! And they don’t understand the necessity of these hormones. I think the truth is, most people are scared rigid of hormones, they don’t know what they do or how they work. They associate hormones with body builders and cheating athletes. Lack of education, that’s the problem.

I don’t know where my illness started, either. It’s possible that it was when I had my tonsils out at four years old. But, then again, nearly all the women in my family – on both sides – have had it, so it’s in the family. But was it Hashi’s right from the beginning, or just hypo? Did the Hashi’s start when I was thirty three, when an ignorant, arrogant doctor prescribed me iodine for not good reason? I don’t know. But, in any case, I didn’t get diagnosed with anything until I was 55! And then it was by accident. No-one, in my whole life, has ever even mentioned thyroid. I was just told I was fat because I was greedy and lazy, I was stupid, slow, awkward, clumsy, etc etc etc. But, of course, it was all my fault! And I could stop it if I really wanted to, if I had a bit of ‘self-control’. Pft!

I’m not sure I understand what you mean by ‘missing e. coli’. What pills would you get too much e. coli from?

Difficult if you’re sensitive to probiotics. Have you tried things like live yoghurt and fermented vegetables?

What country are you planning on travelling to? I don’t know where you would get good treatment because they’re all as ignorant as each other! With the possible exception of Belgium. They seem to be very open-minded there about treatment. And they have the world’s best hormone doctor – Dr Theirry Hertogh. But I doubt if you’d get to see him.

Stupid doctors! What has cholesterol got to do with anything? It’s totally irrelevant – unless it’s low! And what is a perfect cholesterol, anyway? What a load of crap he came out with. You must have wanted to slap his face! Lol And any excuse for a diagnosis of depression! Well, Big Pharma makes it worth their while. And they haven’t got what it takes to think for themselves! And he obviously doesn’t know anything about B12 – or anything else come to that. It really does make you wonder how they manage to become doctors. And you know what? The young ones tend to be the worst! At least the old ones had a decent education. Well, most of them, anyway.

I’m glad if some of my links have been of use to you. It’s true that family just don’t understand. It’s hard work sometimes having to explain why you can’t do things and you don’t feel well. One of my cousins said to me ‘just do as the doctors tell you, and one day you’ll find you’re suddenly well again!’ silly cow. I told her, if I continue to do as the doctors tell me, I’ll suddenly find I’m dead! She didn’t talk to me for months after that. Friends are no better. I had one that kept telling me I was getting better, when I wasn’t, as if saying it would make it so. She gave up in the end, and said well, when you’re well again, give me a ring. Needless to say, I will not be ringing her, whether I get well or not!

Justiina profile image
Justiina in reply to greygoose

Oh my, sorry to hear you had that bad reaction without magnesium. Have you had your levels ever tested?

I know there are not good test, except the urine test after injection.

Good riddance, who needs friends like that who will only be there in a good days! I know it can be hard and heavy for other people to try to understand, but still. If it would be up to us, of course we would rather be healthy than feeling as poorly we are! It is not a choice.

My ex left me because he could not understand me being ill all the time. I had been there when his mom killed herself etc. Better this way, what if I ended up marrying such a jerk. He was not that good anyways :P

Over here we joke about doctors treating test results not the patients. Since they only seem to take a look at the paper and not care about how the patient is feeling or doing. They used to say that is a blessing to be born in Finland since we have such a good healthcare. Well based on the recent events I cannot agree, and I am not even talking about myself. So many people close to me have been misdiagnosed and treated wrong for so long time.

About potassium, I was just testing if it I would benefit from it since my young hot male doctor gave green light that there is no reason why I could not test it.

I took up too 1000 mg with magnesium as foot bath and not sure if it had any effect. Not bad effect at least.

I do try to eat potassium rich food.

E.coli as the nissle 1917 you can get as tablet called mutaflor , they give to people who have Colitis ulcerosa since it apparently reduce inflammation. My young doc said that he cannot give it to me since it apparently has side effects , patient might get the dangerous e.coli. Don't really get how, since the tablet should not contain the same e.coli as the one that make you super sick.

I have been planning on asking fecal transplantation as a last resort, but of course over here in the land of thousand stupid rules they won't do that unless you are pretty much dying. SIGH.

When it comes to side effects of B12 I dont know why I am so scared of it. I do sometimes have these flushes that make me super weak for a moment. But that might be due to healing as well missing something like other vitamins.

But don't want to be without either since my brain finally is functioning much better. No more misplaced stuff.

I would find clean dishes from fridge. Or vitamins from microwave. Or I would leave food in the sink and put dirty dishes into fridge. I would bake cookies in cold oven, thinking the oven is broken since the light on, but never checked whether it was even turned on before putting cookies in.

I would lost words and forget names. I would leave the cooking plate on, which is by the way really scary, now I have induction stove so no more worries about that. Still. I am 35 and my brain were like 90. Tho my memory otherwise has been super sharp , but was hard to concentrate on anything.

With B12 I have some of it back. My friends noticed it first. Usually I have been so tired and fatigued all days long, been hard to talk and suddenly I can talk on the phone for hours and be more like myself, funny, bubbly and playful.

All that I have got back with B12. Still far away from a person I really am, but clear progress.

So maybe I am still on not enough B12 and other vitamins and nutrients and then Hashi will be another thing to deal with when B12 and other things help with some issues I might have more clear symptoms of one condition left.

The hardest thing for me is to give up on exercising. I have been torturing myself trying to ski, bike and roller skate, but because of my weak legs I have injured myself while exercising.

My dietitian told me that it is crazy I try to exercise, that all I do is damage. She said that I am not supposed to do anything except easy yoga, streching and walking. That is heart braking. Even tho every time after doing heavy exercising I get so ill, then I cannot eat at all and just feeling super bad and anxious and weak. People call me smart... some times I am, but this is hard thing for me. As being really active for all of my life before falling ill.

I am super scared of the summer again, since it is hard for me to tolerate heat. It can take 4 weeks that I spend indoors before I can stand the heat. I cannot go to swim, since I cannot be on the beach and swimming even for 5 minutes makes me so really very fatigued.

But cold is not good either, when it is +8 and I go picking berries, I have 5 pants and 2 thick shirts under a thick jacket, I am still freezing. When it is -5 and I try to go to ski, I am freezing, not warming up while exercising.

And over here in FInland it can get as cold as -40, you think I will go out at all?

That idiot doctor at public healthcare said that my body temp which is 35.5-36.1 is healthy and I cannot tolerate summer because I have burned myself when I was a kid... Well I tolerated summer pretty good until I fell ill.

I am wondering if there would be any point of getting my thyroid ultrasound scanned. My mom's gynecologist suggested it the other day. She had asked about my moms thyroid levels since she is still having hot flushes she is not supposed to have anymore. My mom has elevated TSH and she is symptomatic. We also found out that my mom has goiters, found years ago, no one has said anything about it, they only gave her beta blockers.

So my mom asked whether I should get my thyroid scanned since I have had troubles to swallow for years. Gynecologist did recommend it to make sure it is nothing there.

I don't even know whether my mom's goiters have anything to do with me but my dad told that his dad them too, found in the autopsy when he passed away quite young.

I will go and get my b12 blood test in couple of weeks I think. I can go any day I want to, but he said that if it is not improved enough then we have to take another look at it. Maybe then I could ask about that levo and possible trial.

My sister-in-law who is super tired has had her thyroid tested 3 times in 2 years. She has low tsh , 0.8 something and t4 9. Her doctor gave her SSRI. She is sleeping even more. Finally her doctor agreed that she might tired due her low t4, but they wont treat it and gave her more SSRI... I have begged her to go to a proper doctor but she wants to believe SSRI is the right thing for her :( She can sleep 18 hours a day. That is not right!

greygoose profile image
greygoose in reply to Justiina

Hi Justina, sorry I haven’t replied before, but it’s been a busy week.

No, I’ve never had my levels of magnesium tested, my doctor refused out-right. Magnesium is irrelevant, he said!

Yes, I agree with you, who needs friends that are that fickle. It may be difficult for them to understand, but how about a little respect. I left my ex because he couldn’t understand me being ill so often. Only he was allowed to be ill! I only existed to look after him. The only problem was, I left it so long to do it. Before that I was too insecure – it gets you like that, Hashi’s, low self-esteem – to even think about going it alone. Still, all in the past! Better off without him!!!

Oh, it’s not only in Finland that doctors treat results and not patients! I think that's a universal problem since blood tests were invented. Before that, they had to use a little intelligence! Mind you, not many of them did!

Potassium is one of those things that doctors love to test. I don’t think I’ve got a single sheet of results without potassium on it. That and sodium. And if he’s willing to test it regularly, then try it. But it has to be balanced with sodium.

I had never heard of Mutaflor, but I think your young doctor is a bit confused! Have a look here :

probiotics-lovethatbug.net/...

It sounds like something great! And, it would seem, there are very few side-effects :

"Are there any side effects when taking Mutaflor?

Like all medicines, Mutaflor can have side effects although not everyone will get them. After the beginning of administration, flatulence is common. Very rarely, undesired effects of the gastrointestinal tract such as abdominal pain, gut noises, meteorism, loose stools or diarrhea, nausea and vomiting may occur. Again very rarely, cases of headache may occur. If any any of the side effects get serious, or if you notice any side effects not included in this list, please tell your doctor or pharmacist."

mutaflor.ca/frequently-aske...

So, I don’t really know what he’s talking about.

I’ve read about fecal transplantation, but I have no idea where you could get that!

I know what you mean about miss-placed stuff! I opened my handbag to get my door keys the other day, and I found my pot scourer! I wondered where that had gone. I’m always losing things. The other day I found an earring that had been lost for 15 years! Thank goodness I kept the other one. And things turn up in the oddest places. I’ve been told I must sleep-walk and do these things whilst I’m asleep, but even asleep, I can’t imagine why I would put a soggy pot scourer in my handbag. To date I am missing one earring – another earring – and a tee-shirt. I imagine they will turn up one day, but who knows when! Or where. lol

And I have done dangerous things, too. Like the time I went out with my daughter, got to the end of the road and had the sneaky feeling I’d left a gas burner on. My daughter went back to look. Not only had I left the gas burner on, but I’d left the electric fan on, which had blown the flame out, so the whole place was filled with gas! And my two dogs were in there!!! I’ve been extra careful about that ever since. But I still do other stupid things. I’m a liability, I am!

It’s a shame that you can’t exercise if you like that sort of thing. Personally, I’m just glad of an excuse not to do it! I’ve never been able to roller skate, even as a kid, no sense of balance. Couldn’t run, either because I always have the feeling that I’m going to fall face first on my nose. That’s neuropathy for you. I must have had it for many, many years. I doubt I would ever be able to ski. But that’s ok because I don’t like snow and I don’t like mountains! lol But just tell yourself it’s only temporary. You well get back to it when your T3 is optimised.

I feel for you with the temperatures you have in the winter. The cold makes me very miserable. I hate it. But I’m getting better about the heat. It used to completely annihilate me, but now my levels are better, I can take more of it. And I’m sure you’ll find that too.

That public healthcare doctor does sound like a nut case! You know, they just make it up as they go along. They don’t have the answers and can’t admit they don’t know, so they just invent something. It’s so stupid. I was once tricked into seeing a psychiatrist – they told me he was a pain doctor. Without knowing anything about me, or asking any questions, he told me that I had pain in my hip because my children had left school and I didn’t know what to do with my life! Can you imagine? I had a thousand things I wanted to do – still want to do – and I’d had to give up a promising career and go back to teaching because I couldn’t stand for long or walk very far. But he had me down as an empty-nester and nothing I could say would change his mind. I told him that, in my opinion, he needed a psychiatrist more than I did!

If you can get an ultrasound scan, go for it. Especially if you’re having trouble swallowing. I had one when I was first diagnosed, and the stupid technician said my thyroid was too small to be causing any trouble! Obviously, he knew nothing about Hashi’s! Anyway, it didn’t add anything to what we already knew, so the endo never even mentioned the results. But you never know! They could find a goitre pressing on your throat and causing you problems.

It could be that your mother also has Hashi’s. Has she had her antibodies tested? It does tend to run in families. And it could be that you, like me, have had a double dose of Hashi’s genes – one from mummy and one from daddy. Isn’t that nice!

Yes, I think you should ask for a trial of Levo quite soon. Stop things in their tracks.

I feel sorry for your sister, she must be feeling so bad, and the SSRIs could be making things worse. Her doctor ought to be shot for not treating her. Does he have no idea about how ill he is making her? But she would have to wake up to the fact that she has a problem. All the time she is in denial, she won’t get anything done. It’s funny how some people refuse to admit that they could have a thyroid problem, as if it’s somehow not quite nice. Very strange.

Justiina profile image
Justiina in reply to greygoose

Rather busy than bedridden! :)

So you have just tested and figured out the suitable dosage of magnesium for yourself? How much you currently take and what type of magnesium?

I am about to file a complaint of that doctor at public healthcare. Meaning he did ignore all of my symptoms and over looked everything.

I have been reading tons of books about antioxidant treatment, since we do have some excellent doctors over here who have been dealing with these issues from 1970 and earlier. I also learned that before 1982 it was approved to treat patients with vitamins and nutrients!

Then something happened. I also learned from those books that for example selenium and magnesium tests run before 1984 and 1985 have shown that only 10 % of people would have enough selenium in their blood. Even tho, of course blood tests does not tell everything, but still it tells something.

Same with magnesium, they had measured that before 1970 or something people had 3 times higher levels magnesium than after 1980. Yet, blood tests are not accurate for everyone, but it clearly tells that the food does not contain enough minerals anymore because of modern farming.

The doctor who wrote that book is now 70 and he has treating patients with vitamins for over 40 years. He wrote that before 1982 it was normal to treat patients with cancer also with vitamins and minerals and they got good results. It made easier to handle heavy treatments. Then suddenly someone decided that vitamins are humbug. It was not forbidden, but govertment stopped covering the costs. Over here vitamins were and still are super expensive.

And yes they are. I have to order all of vitamins somewhere else. For example I am using glutamine, magnesium, b12, digestive enzymes and now also ordered Swansons bio available complex B with methylfolate, all that would cost me more than 150 euros /month.

The doctor who wrote the book is still seeing patients and I could get an appointment, but that thing is that it would cost me 2000 euros total. That includes doctors appointment, tests (they run several test, all vitamins, minerals, thyroid etc, and start up supplements. I asked the estimation. And then you have t go back in few months to run safety test to see how you are doing. The moron doc at public healthcare said they are only robbing your money and they do nothing real for you.

Well some of the test has to be sent to US so the tests itself would not be that expensive if only we still had the laboratory in finland providing some of the test as we did before 1982. Now only the basic vitamin tests and other normal tests are done in the laboratories at antioxidant clinics.

Well I have learned so many things from the books. For example one strain of bacteria I am missing is actually responsible for making vitamin B's. So clearly there is a reason why I am lacking vitamin B's.

About mutaflor I have heard and learned it is safe to use, BUT I think these things are something most doctors don't know yet. For example my current doctors are really young, but they both are eager to learn. First one asked whether she can take a copy of my thyroid panel papers so she could learn how it is done elsewhere and learn how you should read the results.

The laboratory provided 5 pages of text with recommendation of starting medication for thyroid issues if patient is symptomatic.

But I have not seen this doctor for a while since it is small private practice and they rotate the doctors. They are actually so called flying doctors so they are on call for a certain time in case accident happens and a helicopter is needed. The young guy I have been seeing after her, did recommend the B12 since he had studied that.

FORTUNATELY there are also specialists these GP's can consult any time. Some endos and neurologists etc are working at that private practice, but only for 2 or 3 days in a month, they are not on call for accidents.

My current doctor set the limit with B12 for 3 months. He said that if not major improvement is not happening in 3 months with sublinguals then we will sit down and see what do we do next. I have the 3 months b12 test in a week, any time I want to go. He is not against the injections, but he cannot order them for me unless I have PA. Over here you have to have gastroscopy to confirm PA to get injections.

I have had gastroscopy ten years ago and they found nothing back then. But for functional deficiency they cannot order me injections.

Well, we will see what happens.

My mom will see her gynecologist again next week and will talk more about the thyroid issues since she had asked my mom to bring all the papers with her. She is quite a good doc. She was the one that actually got my dad's psoriasis finally under control lol.

My dad had under treated psoriasis for years. Eventually it got so bad, my dad was barely getting up from bed, having low body temp and feeling weak, skin was inflamed from head to toe and bleeding heavily. My mom forced my dad to go to her gynecologist and she got my dad an appointment with specialist and in 3 months it was all sorted!

In the best case scenario my mom's gynecologist will fix us both re-tests in public healthcare and appointment with endo from private practice she is running.

I hope something happens. I was really devastated this week having super bad stomach ache fearing the worse that I am reacting to probiotics that bad. I figured out I am taking too much zinc! I have been taking 15 mg for 3 and half weeks. I read that it is possible to have over dosage symptoms with low dosage zinc. I did not have issues in the beginning, two weeks was ok. I guess I am not deficient since my diet does contain a lot of zinc and I am able to absorb it OR it could be that I cannot just tolerate high dosages. I will continue taking 15 mg once a week, possibly 2.

So I am able to tolerate my probiotics, which is good news! I can continue making home made

yoghurt from coconut and cashew nuts. Yummy!

Edit: forgot to add that 2 psychiatrist have given a statement that I am anxious because I am ill , not ill because I am ill. and the physical illness should be treated not mental. And I asked to see them in case I would have mental illness in the first place. This irritates gp's Lol.

greygoose profile image
greygoose in reply to Justiina

No, I haven’t been tested for magnesium at all. My doctor wouldn’t do it, said it was of no importance. I just read up on magnesium and decided to take it because I fitted the profile, and most people are low in magnesium these days, anyway, as you said. At the moment I’m taking 400 mg magnesium citrate, but it doesn’t feel as if it’s enough, somehow, can’t explain it. But mustn’t take too much!

I do hope you get somewhere with your complaint about that doctor, he really does sound bad. Let us know how it goes.

That book you’re reading sounds very interesting. But, what happened to vitamins and minerals is the rise and rise of Big Pharma. You can’t patent natural products, so there’s not much profit for them in vits and mins, so they’ve done their best to discredit them. With the result that doctors no longer learn about the necessity of vits and mins in med school – and most of them are too dumb to work it out for themselves! That’s terrible that they are so expensive in Finland. Thank god for the internet!!!

Still, it sounds as if you are managing to weed out the more intelligent doctors over there – apart from the public clinic one. And it sounds as if they’re trying to help you, and are at least open to new ideas and want to learn – which is something you rarely find with the older doctors. I hope the B12 works for you.

So, there are autoimmune issues in your family if your dad has Psoriasis. But I didn’t know it could get that bad! My aunt had it on her arms. It was unsightly but not as bad as your dad’s. I just have it in my finger nails and find the only help is to keep nail polish on at all times. It goes down under the nail polish but as soon as I take it off, it flares up again. What treatment did your dad get for it?

Good job you figured out about the zinc. I’ve been taking it for ages, and it’s calmed my stomach problems a lot. But, obviously, it’s a question of taking the right amount. Can’t remember the dose I’m taking, the bottle is in the bedroom, I take it last thing at night.

Well, that’s great news about the psychiatrists! They are obviously good ones and don’t try to fit everyone into the mental health bracket at all costs, like a lot of them do! Well done them! Lol

Justiina profile image
Justiina in reply to greygoose

My dietitian advised me to take zinc, glutamine and vitamin A to help with leaky gut.

Well vitamin A fixed my super sore eyes, I still have difficulties in bright light, but not hurting that bad. I only took high dosage for a while as advised and then lower dosage with cod liver oil with vitamin D.

Glutamine also works for my stomach nice, even tho it is said that it is not good to take it with B12 as it can change it to something else. But for me it seems to work.

Taking zinc actually seems to resolve the issue with falling hair or that now I am taking larger dosages of B12. Who knows lol, but less falling hair.

I do have very healthy diet so it might be that I need less zinc, but still some. Or I might just be one of those people who will have symptoms with low dosage which does not mean toxicity.

My dad used cortisone cream first, which lead to injure of achilles tendon. He has used all available creams on the market meant for psoriasis. No help. Large dosages vitamin A, uv light treatment which only burned his skin.

He was bleeding from head to toe and I had to help my mom to clean up their house few times a week, because there were flakes every where. My mom had to buy tons of new sheets because of my dad bleeding. He tried it all. Then my mom's gynecologist helped him to get appointment with proper doctor and they ran the tests whether he would be proper candidate for small dosage oral chemotherapy or biological medications.

He was good to go and they started small dosage with oral chemotherapy with 5 mg folic acid. He tolerates it very well and it worked in 3 days, now he has been on the medication for a year and is ok. Except common flu can be hard for him, we all had it this year and he had fever for 3 weeks so he has to take all possible injections to avoid all type of illnesses.

If this had not worked, he would have been good to go with biological medication as well.. BUT it costs 1000-4000 euro /injection few times a year.

My doctor said that it is not unusual if I have autoimmune disease since my dad has psoriasis and my mom has at least red lichen. (Doctor Jerk it has nothing to do with me, lol)

I guess we all have something. My brothers are not that healthy either. I am the only in our family that has normal cholesterol, I am skinny and only one on healthy diet and tries to exercise, yet I am the sickest, meaning I am unable to cope everyday life.

My brothers are a bit over weight and especially brother A has hard time losing weight, he is also super tired all the time, catches every possible flu. During the last years he has started to snore so badly that his girlfriend has to sleep in living room. He has to drink tons of coffee to have some energy, he also has mood swings and so on. Very sore eyes , you name it he has it. Also his TSH was elevated last time, BUT T4 nor antibodies not tested. High cholesterol. His vitamin D was also low. I did try to educate him but...

Brother B is over weight and has a super sweet tooth, always eating something sugary ie candies, ice creams, cookies, cakes. He has high cholesterol about the rest I don't know.

We all have grey hairs :/ My mom started to gray under 30, I was 30 and so were my brothers. So maybe that just runs in the family, or we are all a mess lol.

Yup, these psychiatrists were super cool! First thing they said that get off of SSRI and sedatives. They did not like it at all that I had been forced to take the medication in order to receive treatment from occupational health care.

They also figured out that I had yersinosis and that was the culprit of years of inflammation in my knee. They also said that I am anxious because I am ill, not ill because I am anxious. Other one even made a house call after a work day.

I will have my b12 re-test on tuesday and then will see what will happen. B12 helps me a lot, but I do feel that it fixes some of the issues and now other symptoms are getting to the surface. Hard to explain but I think you get the picture :D Best part is that I am able to eat better, without being awfully nauseous after eating.

Still waiting for my high potent bio-available complex B with methylfolate to arrive! Then all I am missing from supplements is K2D3, will switch cod liver oil capsules to that. I so hope K2 or something would help me with my heavy periods. Have read that for some people K2 has done the trick. Don't know, willing to try almost anything.

And before you ask, no ferritin has not been tested, only hemoglobin, which was high. I did ask for ferritin instead, cannot remember why it was denied.

I have learned so much from this forum, I am so happy that now I start to understand and everything starts to make sense. I have to push this Hashimoto's/thyroid issue thing, and make doctors understand, it sounds a bit silly, but it seems to be the only thing with vitamin deficiency that I actually fit in.

I cannot deal with this anymore, I cannot push myself anymore. Forcing yourself to do things because you have to do things is itself super exhausting. My legs weigh like tons, I drag myself around. B12 has cleared some of the brain frog, as I accidentally called it :D But still I am really fatigued, good part is that now I can lay in the bed and read when physically so worn out that dont want to move.

I am sorry to hear you have psoriasis in your finger nails since it seems to be really hard to treat. Only thing they can do is cortisone and vitamin D as cream. Don't know how effective they are, but psoriasis is ongoing inflammation so maybe that makes your Hashi worse?

By the way, now that they finally admit that cholesterol is not a culprit anymore, it is not the bad guy and statins are possibly super bad , I read from the news paper that one Finnish doctor tries to push statins for younger people. He said that people should start using statins under 40 and push their cholesterol really down. Lol. Not suspicious at all. But sad also, doctors like him are poison.

Eat a dinner for breakfast - ie a cooked meal.

riannabri profile image
riannabri

Im shocked that your doc did not confirm Hashi's as my Endo states that Thyroid Antibodies only show if you have auto immune thyroid condition (i,e Graves or Hashi's) so that in itself is bizarre.

I get terrible flares even though I am totally gluten/grain/wheat/carb and sugar free. EVERYTHING for me depends on these flares - so if my TgAb's are high then I react to everything, I get breathless, weak I cant walk, pain everywhere, anxiety, intollerant to foods, smells, feel like I have flu and so on.

When I explained this to endo he said as the TgAbs raise your whole immune system goes haywire and your throud gets attacked and dumps loads of thyroid hormone in system so you go hyper/hypo but even being hyper does not mean your running around it causes more pain and symptoms as your in a flare.

So personally I think like myself your intollerances/symptoms are more likely to be determined by your antibody flares, making you over react to everything on those flare times - For me no matter what I eat does not lower antibodies although If I have anything with Iodine I am put in to a Massive flare where AB's go crazy and thyroid nodules increase

Here is exactly what Endo said in an email when I was going through a thyroid Flare and had High TgAb of 880+

The anti-thyroglobulin antibodies (and/or TPO abs) are diagnostic for Hashimotos. I don't know of any other conditions that cause high anti-thyroid antibody levels. A Hashimotos' flare can cause the death of many thyroid gland cells and the release of thyroglobulin and of thyroid hormone leading to hyperthyroidism. Hashimoto's can cause neck discomfort, as can other forms of thyroiditis.

Justiina profile image
Justiina in reply to riannabri

Yeah it is a bit disheartening when they say that and don't repeat the test since I am clearly not healthy :(

Thanks for sharing your experience. It explains a lot. I think I am sort of getting the picture. For some people diet helps and in some cases it does not make a big difference. It would explain some things, like why nothing I do seems to help a lot.

Living without proper diagnose is a nightmare for me. Getting diagnosed does not make one healthy , but you can finally stop guessing and worrying and living with it.

I need to talk about this with my doctor and tell them to do something, if they cannot do anything then they have to fix me appointment with someone who knows.

Thank you again!

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