Dietary and insulin advice please for Hashimoto's newbie?!

Having just been diagnosed with Hashimoto's, (raised thyroid antibodies of 380 though I do seem to have crossover symptoms for both Hashimotos and Graves and still have an ultrasound to come) I've been looking on the net for things that might help with the condition. Doctor has just started me on 50mg of Levothyroxine but I've been reading about the benefits of following a gluten free or even paleo diet, which does seem like it can help stop weight gain and prevent other autoimmune things possibly kicking in. I already have Type 1 Diabetes, Alopecia Areata and the start of Vitiligo and can't face getting anything else.

I feel so run down right now because I've just had a couple of months being zonked out with glandular fever too,then had to adjust to floaters in my eye through a vitreous detachment and now, this week, the Hashimoto's diagnosis. I used to be such a healthy person but I feel like I'm falling to bits now and need to get myself fit again.

I don't drink, have never smoked but have always enjoyed a healthy diet and am a normal healthy weight. I love baking but obviously have had to learn carb counting for my diabetes insulin dosaging, so the thought of trying to balance my diabetes control with whatever this autoimmune thyroid problem will do to me, fills me with dread.

Are there any members who can advise me how insulin uptake might be affected by Levothyroxine or thyroid upset,please?

Also, is a gluten free or paleo diet accepted as the norm for those with Hashimoto's and is it really worth the change? It will break my heart to give up home baking and enjoying eating out etc.

I want to help myself but I often find advise from those living with a condition more helpful than that from those with understandable limited knowledge of autoimmune conditions in a G.P. practice. I only get to see an endocrinologist once a year for my diabetes and even that I'm having to fight to hang onto because of cuts in funding.

I'd be really grateful for ANY advice on the above please and thank you for reading thus far.

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37 Replies

  • Three sites with a lot of info, and yes, diet can have a tremendous impact. PR

    Dr. Amy Myers, she just hosted the autoimmune summit and had Graves herself.

    What she learned from the summit.

    Dr. Izabella Wentz's site, she is a Hashi's patient and a PharmD

    Chris Kresser has many articles about the Paleo template approach.

  • Just want to say welcome to the forum and I hope you get lots of helpful replies. I've got VD floaters in both eyes and hardly notice them a few years down the track. I'm long sighted though so that makes it difficult to focus on them.

  • That third link is excellent and I may well get her book. Thank you so much for posting.

  • Since you enjoy reading and are concerned about changing your cooking habits you might enjoy Sarah Ballantyne PhD, AKA Paleo Mom, share some of her experiences about changing to a Paleo style diet. It is a 4 part series. PR

  • Stopping Gluten won't help anything if you are not allergic or sensitive to it. I have gone Gluten Free for 6 months and it did nothing. I have had numerous tests and i am fine with Gluten. I am sensitive to Milk and cutting that out, has helped with reflux, bloating etc.. but i still have Hashi's. and feel no better. I would not cut out the things you love..we are miserable enough already. I would love to tell you that 50 Levo is your answer and you will feel well, but, most here, have not and have found doctors know very little about medicating low thyroid and also, Hashi's, and for me, it has it's own set of symptoms, that meds don't help. I have been on every type of thyroid med and now t3 only, because i don't convert Levo. to t3..and i still have symptoms. I am very inflamed from Having this Autoimmune Disease. Doctors do not treat autoimmune disease and think it has no symptoms. It has been a very difficlt experience and i hope it is easier for you!

  • Hi,

    Welcome to the forum. I was diagnosed with hashimotos earlier this year and after a few ups and downs in finally feeling a lot better and a lot more physically settled since following a gluten free and paleo diet for the past few weeks. I have a lot more energy, my stomach is more settled and I'm not crashing in the afternoon like I used to.

    I'm also in to baking and cooking and have found some amazing paleo gluten free recipes online. You use almond or coconut flour instead of regular flour and everything I have made so far tastes great. Just google paleo recipes and you'll find so many sites dedicated to the subject.

    Hope this helps. Enjoy trying out the recipes!

  • Welcome :-) It seems that auto-immune issues do like to hunt in packs ! I was diagnosed with Hashimotos at 59 in 2005 and look back over my life and think that I possibly had the condition a lot longer ! I have also had Crohns for over 40 years.

    I have been gluten free for more than a year and can feel the difference in many of the symptoms that accompany Hashimotos. Some people say being GF does not make any difference - but unfortunately we cannot always see what is going on inside and from what I have read it seems that gluten molecules can adhere to the gut wall and cause inflammation. This leads to gut permeability and an auto-immune response. Gluten molecules can also permeate the blood brain barrier and cause inflammation....which had me running for the gluten free products :-)

    Wheat is not what it used to be - it has been hybridized to such an extent that our bodies do not recognise it - then there are the 14 or so chemicals that are sprayed on it both before planting and after. Just a thought.

    You do not have to give up your love of baking - there are lots of interesting recipes out there - I am just off to make chickpea flour pancakes :-)

    Have you had the following tested - Ferritin - Folate - Iron - B12 - VitD. It is important they are all optimal or towards the top of their ranges. Ferritin around 80/90. This will make you feel better as well as helping the T4 to convert in the body into the ACTIVE T3.

    Wishing you well much to read and so much to learn - so take it slowly. I am feeling much better since following advice on this forum but it does take time.....I still hang around as there is always something new to learn :-)

  • Hi Chocoholic, sorry to hear you're having such a rough time. It's bad enough having Hashi's, without all the other stuff!

    I have to say, that whilst a lot of people find gluten-free revolutionises their lives, for me it did nothing. But we're all different and we have to find out what suits us personnally by trial and error, I'm afraid. There are no hard and fast rules. I've never tried paleo because me and food have a difficult Relationship, anyway, and having to stick to a strict diet would probably mean I stopped eating altogether! But that's just me. Once again, the only way you're going to know if it helps is to try it. If it doesn't, you can always got back to your old way of eating, you're not committed to anything.

    As Marz says, very important to get your vits and mins tested - and I would add to that list magnesium, zinc and copper and selenium! But you'd be very Lucky to get them all done! If any of them are deficient, that is going to make you feel very bad. People underestimate the power of magnesium and B12 in particular. And doctors know nothing about nutrition. Getting them all optimal will make a difference to how your body uses the thyroid hormone you're giving it, and thus how you feel. But, once again, trial and error.

    I'm afraid you've now embarked on a long journey, but my advice is to take it one step at a time - baby steps. And we'll be here to help you every step of the way. You're not alone. Did anyone tell you how to take your levo? For best results, it should be taken on an empty stomach, one hour before or two hours after eating, with a full glass of water. Not tea. Not coffee. Water. And leave four hours before taking suppliments. I know, this makes timing difficult, and for that reason a lot of people find it best to take it at night. But the most important thing is not to take it before your next blood test - take it afterwards - leave a gap of 24 hours between your last dose and the test, or else you will skew the results. And try and get it done early in the morning, because that's when TSH is highest.

    Did you have a blood test for anitbodies to get your diagnosis of hashi's? Because that would have told you if you had Graves as well. The important thing with blood tests is always to ask for a print-out of the results. That way, you can chart your own progress, and if you have a question, seeing your latest results will help people here to help you.

    If you have Hashi's, it is possible to have hypo and hyper symptoms at the same time. Just because one part of your body is hypo, doesn't mean they all are! Besides, a lot of symptoms can be felt with both hyper and hypo. That's normal - if you can call it that! lol

    I wish you lots of luck on your journey. Just know that it is possible to come out the other side.

    Hugs, Grey

  • Thank you all for your kind replies. I've had such a restless night wondering how to approach things because I'm reading such alternating views online.

    It's good to hear that there are still lots of things I can bake. I have over 100 cookery books, so I can see myself buying a few more. Just that one piece of info is encouraging.

    I try to follow a reduced carb diet for my diabetes and it's only recently that the medical profession is coming round to lower carb being the best route for diabetics. I refused to see how the RECOMMENDED healthy plate that suggested high starchy carbs with every meal was best when those things turn to sugar, so I reached a good compromise with my diet and have pretty good diabetic control at the moment. I'm going to just go and read the labels on gluten free products this morning to see what the sugar content of those is.

    It's interesting to read that some of you do and some of you don't have improvement from going GF. I guess we're all different. Maybe I should wait until after my ultrasound on the throat before I take the plunge.

    What is the NHS guidance on GF for Hashimoto's? I really wish I knew who to approach to pull dietary advice together to help all my autoimmune conditions. I have an inquisitive mind and have read masses in the last 24 hours but it all seems so conflicting and I just want to get it right.

  • HI The diabetic diet is the best for thyroid too.Carbs particularly need watching. THe American diabetic site is best for diet.


  • Thanks for the referral to the American diet. I shall seek that out.

    Grey goose....your post had me in tears. You so obviously know how I'm feeling because I do feel 'alone' right now.....or I is so nice to speak to others in my position.

    My mother always tells me off for going on the net but I think it's a wonderful tool and without it I'd still be living with two wrong diagnosis....I had 5 years believing I was a Type 2 Diabetic and very recently was nearly fobbed off with anxiety and antidepressantsfor this latest thyroid problem. It was only through chatting to folk online and my own research, I plucked up the courage to ask for antibodies tests, in both cases, that I got the correct diagnosis of Type 1 Diabetes and Hashimotos.

    I have not had any vitamin or mineral tests. My thyroid antibodies test was 380 that is all I know on that. Doctor did tell me it's possible to swing between Hashimotos and Graves but didn't definitely say that is the case with me. He just thought it best to start me on Levothyroxine to try and bring down this awful swelling in my throat that is making me choke on my food.

    I do appreciate all your input everyone so please feel free to give me your honest experience of dealing with this condition.

    I think I am becoming a health bore to my family but my husband is so amazingly supportive, so I count my blessings.

  • Doctor did tell me it's possible to swing between Hashimotos and Graves but didn't definitely say that is the case with me.

    Your doctor is wrong or doesn't really understand thyroid antibodies. There are several different kinds of antibodies which affect the thyroid. Having high levels of one kind doesn't automatically mean you have high levels of another kind. Only one kind (TRAb) is associated with Graves' Disease. The other two kinds that are tested for are TPOAb and TgAb. The first is usually associated with autoimmune hypothyroidism (i.e. Hashimoto's), the second is normally associated with thyroid cancer. People can have more than one kind of antibody.

    What your doctor was probably referring to is the fact that antibody levels can fluctuate dramatically. And the speed of fluctuation can vary from one patient to another. Some people may have high levels one week and low levels another week. Or they may have high levels for months then low levels for months.

    Sticking with TPOAb antibodies for now :

    If you have high levels this indicates that your thyroid is currently under attack. The antibodies slowly destroy the cells of the thyroid (destruction of the thyroid can take decades). When this occurs, the thyroid hormone which is in the tissue that has been attacked is released into the body/bloodstream. This raises your thyroid hormone levels (T4 and T3), reduces your TSH, and can make people feel hyperthyroid i.e. overactive.

    If your antibodies calm down for a while, your thyroid hormone levels will drop, your TSH will rise, and you may start to feel more normal or even hypothyroid i.e. underactive.

    It is these swings in antibody levels that make people swing from apparently suffering hyperthyroidism, then hypothyroidism, and back again (which is not the same as swinging from Hashimoto's to Graves' which is what your doctor said).

    One problem with this process is that levels of thyroid hormones and TSH don't always respond to these fluctuations at the same speed. So your TSH (for example) may change more slowly than you would like, making your whole problem worse. It also makes life difficult when dealing with doctors because they insist on diagnosing thyroid problems on the basis of the TSH level and nothing else.

    Obviously if people also have TRAb and/or TgAb antibodies this muddies the waters even further, and makes life even worse for the sufferer.

    Thinking of people with gluten sensitivites now :

    If your body produces antibodies to gluten, those antibodies can (apparently - I don't understand how), mistake thyroid tissue for gluten molecules, and start attacking the thyroid. So the theory is that if you have a gluten sensitivity and you give up gluten then you reduce the overall number of antibodies you have, therefore you reduce the strength of the attacks on your thyroid, and you make your thyroid last longer. (Hopefully it will last until you die!)

    I must stress this is only my understanding of the whole thorny issue of autoimmune thyroid disease, and I realise I may have got it wrong. But I still insist you can't swing from Hashimoto's to Graves'. It's a meaningless statement!

  • Thank you for your posting. Much appreciated.

    I think perhaps I have misunderstood the doctor then. I think his actual words of puzzlement were....'Hmm. Hashimoto's or Graves? It's tricky because you can swing between hypothyroidism and hyperthyroidism. Hmm.' Which is what you are saying and I apologise because I thought what he was saying, was how I posted his comment.

    Gosh. It is very confusing but I'm so grateful for any info.

    My main concern is getting my throat sorted. It's almost impossible to swallow anything that isn't liquid or almost liquid and I'm choking daily.

    I'm just praying my scan is done soon.

  • If does seem that going gluten free is a very individual thing but for me it has been transformative I have hashimotos so I wouldn't know how it affects diabetes. It was very hard in the beginning (5 month ago) but advice on here assured me that it would get easier in time and they were right. The one thing that I wanted to say it don't think that you have to stop eating out, many restaurants will cater for a gluten free diet and I wanted to specifically recommend Carluccios. There are a few branches around the country. They have a specific gluten free menu, which was great as it meant I could look at a menu and choose as opposed to spending time working out what you could and couldn't eat and the the waiters were so helpful that it made you feel like a valued customer again - not a pain in the arse!

  • Thanks,Churchie. Funnily enough I just checked online for local places that might do GF meals and there is one in my town who does a few things on their menu that are GF, including great sounding desserts.

    I think I remember a full page advert in the Daily Mail this week too for two new Nestle gluten free cereals.

    I don't know I have the willpower so close to Christmas to make the change. I have already made my Christmas pudding, sausage rolls etc as I'm hosting Christmas this year.

    If I make the change I need to be totally committed to it and not have temptation in the way.

  • Understand that, but if you feel so much better going gluten free you will find that you it is reward enough and there won't be temptation to go back.

  • You sound like someone whom really thinks about their diet! I think in the early stages after/during diagnosis you will naturally bresearch all you can, and after a while you will internalise it all and come out with a way forward.

    I never had a hashi's diagnosis, it was hard enough to get diagnosed as hypo, but I did find going gf helped, and going grain free helped more. I am just now trialling milk free so I think currently I would count as paleo! I'm sure we all do better eating what we were designed to eat, but personally don't want to get involved in the endless discussions as to what is strictly paleo.

    For a clear understanding of why low carb is good for diabetics, watch Jason Fung's videos on YouTube entitles 'The Aetiology of Obesity'. He is talking about type 2 diabetes, but insulin is insulin, and the rest of what he says is universal. He has a blog which covers the same ground. My opinion is that you would do well, and lose weight, if you went paleo/low carb.

    For why gluten (and in particular modern wheats) is/are bad news read 'Grain Brain' by Robert Perlmutter.

    In addition to iron and B12 I would suggest getting yourself tested for vitamin D. And take a look at magnesium, which is very commonly deficient and involved in so many hormonal processes. Diabetics need more magnesium, I believe, but its rarely supplemented in conventional medicine.

    Don't get too despondent about Levo, it works fine for most people so no need to worry unless you find you are one of the unlucky ones. They are overrepresented here, of course, because this is where we come for answers.


    The Cook Book is very interesting - just love his Cauliflower Cous-cous :-) Am sure he won't mind being called Robert :-) :-) He seems such a nice man.... :-)

  • Whoops! Brain fog. Its Robert Lustig, also a good read, and David Perlmutter. Sorry Doc!

  • :-) :-) x

  • Thank you Marz. That is a fascinating link. I definitely have much reading to do.

  • You can do it :-) x

  • I think greygoose had great advice. One step at a time. I was in bad shape for at least 1 1/2 years until my synthroid dose .......seems to be stable. And even at this point I could get a raise in meds. I never went GF and I think it may have high sugar levels in some products. It is all individual and there is great support here. I wish you all the best........ Susita

  • You need to get your Vit b12 & Vit d Iron folate.homocycteine levels done.Google could it be B12? Don't accept level if in normal range ours was & we both have genetic mutation MTHFR .

  • Hi Chocoholic

    Commiserations - but the fact that you have an inquiring mind and the support from here will help you a lot. I was diagnosed hypo/hashi's and started levothyroxine in June this year. My brain wouldn't work and I could barely stay awake to read any books initially. The one thing that made a dramatic difference for me was stopping gluten completely. (I had never suspected a problem with gluten as it didn't cause me any obvious symptoms). But stopping it really helped lift the brain fog and allowed me to research this illness. As you will find, there is a lot of conflicting information but even so, you will find a lot that is consistent. I had thought that gluten-free was the 'alternative medicine' point of view, but in fact my GP also recommended it and when I finally saw an endocrinologist recently after waiting months, he also said I should stay off gluten (even though my coeliac screen was negative). I had piled on 1lb each week since starting the levo but have lost loads of weight effortlessly since going gluten free (eating lots). I've learned that it is important to eat more often than I want to (every 3 hours or so!) and I don't avoid fats (coconut oil, butter, olive oil mainly). I take a strong multivitamin/multimineral WITHOUT IODINE - difficult to find ones without iodine but I traced down Basic Nutrients V from Thorne Research. Expensive but seem very good. I'm feeling better from a multipronged approach including those vitamins, thyroxine, eating lots of liver which I detest but am getting better at cooking!

    I too love my food and love cooking and couldnt bear the thought of going gluten free - for weeks I kept thinking of things I could never have again - no toast, no croissants, etcetc. But its been 3 months now and it really wasnt that difficult - except time consuming cooking everything from scratch. You'll find that a lot of the food that is marketed as gluten-free food is quite unhealthy so best to cook your own food from scratch. There are so many delicious foods out there without using gluten. If you can afford it try to eat organic (I can thoroughly recommend Riverford for veg, meat and dairy). When you do start going gluten free be aware that it is hidden in so many products. Eg sad news for you but lots of chocolates contain gluten - but lots dont. You just have to find out which ones dont. So far (I hope if I am wrong someone will correct me) I have found that Cadbury's Twirl and Toblerone are OK. My favorite Cadburys Dairy milk and lots of Lindt bars are not OK :-( Also, no more Guinness for me. However, although I am still not fully well yet, I am wayyyyyyyyyyyyyyyyyyyy better than I was 3 months ago not to mention the dreadful state I was in 6 months ago. So you will get there. You will need patience but dont lose hope. Best of luck to you. :-)

  • Evo1, thank you SO much for your posting. We sound very similar and I so appreciate your input. I'm always blown away by the kindness of folk on chat rooms like this. The press focus so much on Internet trolls but my experience has only ever thrown up genuine kindness and a willingness from others to help.

    Your post has given me such hope and once I can actually eat properly again and have my throat clear enough to swallow, I shall really push to see my endocrinologist again and get started on a gluten free diet.

    My head is a bit all over the place at the moment and I want to approach such a huge diet change when I've had time to properly digest this new diagnosis and feel a bit stronger physically (think I'm still not back to full strength after the glandular fever) and mentally.

    I'm so glad I joined this forum.

    Thank you everyone for your support.

  • Glad to be of help. I only wish I had more time/energy to share more of what I have learned. I'm going to harp on again about gluten-free because if there was one bit of advice I wished I had right at the start it is that. Probably would have saved me 3 months of hell and it is something you can do yourself without waiting for your endo to endorse it - there are plenty gluten-free carbs to choose from. It MAY help you to get more energy and feel better physically and mentally. Not a lot to lose if it doesn't make a differerence.

    I kick started mine with a detox using this: (Of course with your diabetes this may need a lot of modification)This site has good nutritional info but is also looking for your money along the way...I found it helpful as it gave me a plan to follow when my brain just wasnt working. But if you are very clued up about nutrition and ways of using things like flax seeds, chia seeds, squash, pumkin etc you could probably do it yourself.

    My reading is very slow but so far a book I could recommend is Hashimotos the Root Cause. Also this video series is informative (my hypothyroid brain still hasn't come to a conclusion about his treatment option relating to iodine but lots of good info otherwise):

    I'm currently wading through 'Why do I still have thyroid symptoms while my lab tests are normal' - lots of good stuff in there but I dont know enough yet to know if he is an utter genius or a quack. So confusing....

    Good luck.

  • Thanks, evo. The book Root Cause, I'd already heard about and hinted to hubby it might be a Christmas present idea. Also suggested gluten free cookery books to my son.

    I have looked at Gluten Free products in store and I can see it'll be abit of a minefield sussing out what is a good choice. I notice Tesco's own Gluten Free Cornflakes are about 80% sugar...not great for a diabetic but I was actually surprised by the array of breads and bakery products available and they were no higher carbs than normal bread. The gluten free bread seemed particularly high in price. I've read that coeliac's can get it free on prescription and so they should as it's an allergy but I guess if it's a CHOICE to go gluten free, I'll just have to accept its more costly.

    I've a lot to learn but I feel more confident it'll be do-able now.

    Thanks again.

  • I was told that to b tested for coeliac you need to have been eating gluten at least twice a day for 6 weeks. So if that applies to you get tested ASAP before you give it up, otherwise it will be very difficult. I tested negative for coeliac but stopping gluten made a huge difference. But unfortunately no free prescriptions...

  • But I can't swallow bread or biscuits etc at the mo'. It's as much as I can do to swallow jelly,ice-cream or scrambled eggs. Really hope they hurry up with this ultrasound.

  • Hey chocoholic!

    Right where to start? I've had Type 1 Diabetes since I was 12 months old. Over thirty years. I've been on MDI up until April 2012 and I'm now on an insulin pump which to tell the truth has helped me in other ways, especially changing my diet.

    I was diagnosed with autoimmune thyroid in August, TPO antibodies were 363. I realised then that I had Hashimoto's but the GP would not diagnose it as such. Went gluten free after the antibody test and have honestly never regretted it. I miss pastry more than any other thing! My GP told me that I would become deficient by doing it so the NHS doesn't seem to be advocating gluten free as a way to control the Hashimoto's. Least not where I am, though my diabetes consultant was an advocate of going gluten free.

    Since August I have not had a Hashimoto's flare. I check my BP and pulse regularly as raised BP is a definite flare up symptom for me. The soreness inside my throat seems to be progressively getting better too. GP will not order an ultrasound either.

    I'm on the paleo diet and I'm going to try the autoimmune paleo diet just to see if anything else causes reactions. Gluten, soya and dairy free. On an insulin pump I can eat three meals a day or just graze on carb free foods if I like as it keeps my blood sugar steady all day long although my personal opinion is that you need safe resistant starches to feed your gut flora. Part of the issue with diabetes is that on MDI a lot of patients eat in reaction to the insulin to stabilise their blood sugar, whereas on the pump you bolus for the carbs consumed thanks to testing your basal rate and finding what your body actually needs during each hour of the day. It's a bit confusing to think that you always have to think two hours ago when you adjust your basal rate but by eck it works!

    If you are not on a pump then I would look up basal rate testing for MDI. It will help you no end but be warned you will need to carb count and you will need to test your basal rates more than once as insulin needs change throughout the year.

    I also have had a ton of laser treatment. My right eye was bleeding and the vitreous came away shortly after treatment, I had many bleeds that cleared and then the blood went into the vitreous and I was rendered partially sighted for 18 months. This cleared one day and now I just have kelp in my eyesight... a strand of blood in the jelly that swishes back and forth like seaweed. Sounds bad but it really isn't. As my blood sugar has dropped to nearly normal range my eyes have had side effects. Ironic that better control causes this, though I'll be honest I am very grateful that I can be so spontaneous by using an insulin pump. My eyes are fine in regards of the retinopathy, the laser has worked, it's just we get issues from the laser treatment every so often!

    As for insulin requirements. I had issues taking Levo so I had to stop. I've been getting all my nutrients up to optimal levels and I'm going to discuss the thyroid hormones again in the new year. But I did notice one thing. Levo seems to drop blood sugar. When you take it watch out for hypos at about the three to four hour mark. I believe this may be to do with metabolism as when you are optimally dosed you should start to lose excess weight, this would indicate that your whole metabolic rate shifts up a gear carrying your diabetes with it. Just monitor yourself well! Also Hashimoto's and gut issues can cause problems with insulin resistance. I've noticed going on paleo and cutting out grains that I now tolerate starches better, no more spikes with bananas.

    Anyway, hope this helps and welcome to the site!

  • Thank you Donna, that is a very helpful post.

    Yes, I am on Lantus and Novorapid, so count carbs. I did try low carb diet to help with my diabetes but felt better on a reduced carb diet if I'm honest.

    Because I'm well controlled and am happy managing my diabetes with injections, I never really fancied a pump but I do test my blood sugars about six times a day to keep good control.

    You mention extra hypos on Levo and I did have two hypos at 2.6, which I found surprising, so perhaps that is the Levo kicking in. I will keep a lose eye on things.

    I had a vitreous detachment in my eye, totally out of the blue, a few weeks back and now have floaters but I've got used to those now.

    I wish you well, Donna and thank you again for your helpful post.

  • I'm more confused than ever now. My ultrasound result is back and it shows I have several nodules. My antibodies test came back at 380 and yet the comment from hospital is 'no sign of Hashimoto's. Can you have Hashimoto's without a goitre? If it's not Hashimoto's then what is it?

    I am now to be sent for a different sca. I hope they don't intend trying to stick a tube down my throat because I can't swallow as it is and know it will be impossible for them to do.

    I feel very down and teary right now. Just when I thought I had a diagnosis, I am thrown into total confusion again.

    i can't even remember the name of this second scan and wish I'd asked more questions on the phone but it just thre me when they told me and my brain went to mush.

    Please, can anyone advise.

  • You have Hashimoto's.

    There you have a diagnosis! I went through the exact same thing. My GP told me that because I don't have a goitre, I didn't have Hashimoto's and that it was "very rare". It is not rare.

    In the US 90% of hypothyroidism is caused by Hashimoto's.

    And yes, there are two kinds of Hashimoto's. One problem with a gene causes a goitre. The other, does not.

    Get hold of a copy of Izabella Wentz's book Root Cause. You can find it on Wordery if you don't want to use those long river, tax avoiders!

    Your antibodies are about the level mine were when I insisted on having them checked. I had to in the end go to a private endo to get the diagnosis that I had already worked out for myself. I fully intend to monitor mine privately if need be to see if all the work I am doing is dropping them. I am 100% sure they are as all my inflammation has gone in terms of outwardly detectable symptoms.

    Basically put it this way, between the diet and the supplements I am on I would say I am better in health than I have ever been. I still need some thyroid replacement hormone but at the moment I am healthy and happy. Bouts of depression are completely gone.

    More people should be talking about this more openly. I am starting to think I should document it all here or maybe in a blog or something because I am stunned by the change in me, actually hubby is coloured surprised too!

    If you need any more help let me know. You do have Hashimoto's though. They hate using that diagnosis in the UK, though goodness knows why?!!

  • Thank you,Donna. You do start to wonder at times if you are going mad when in the throes of getting a proper diagnosis and my G.P has now gone on holiday until after New Year, which is a bit of a blow but I shall see how quick this next scan appointment is. If it's too long, I may go private and will see if I can see an endocrinologist. Thanks so much again for your input.

  • No worries hun, you have to be very careful when deciding on a private endo though. Lots of them are NHS too and they read the same script we have all heard on here.

    You are most definitely not going mad.

    If they do want to put a camera down your throat then you need to say that you can't do it and clearly explain why. For me I noticed that I was choking much more easily. I still do so wonder if there are internal nodules. Unfortunately no scans for me!

  • Also if you eat the fruit of the season that is grown near you this will enhance your immune system greatly

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