Hi everyone - I'm new here but suspect I'm not so new to having Hashimoto's. My GP is not very generous when it comes to imparting information - just handed me two referrals - one for a Thyroid surgeon and one for a neurologist. I like trying to improve my own health as much as I can so started googling and reading and have decided to try the Auto Immune Protocol diet as promoted by Sarah Ballantyne and Izabella Wentz. I've only been on it for ten days and already have significant relief from some of my more worrying symptoms - burning feet and hands and dizziness. Fingers crossed I can tear up the neurologist referral. But that brings me to my question - I have no understanding of how advanced my Hashimoto's is - if anyone would care to comment on my bloodwork as follows I'd be very appreciative:
Comments - Normal TSH and free T4 results are consistent with an euthyroid state.
I should also mention that I have a multi-nodular goiter and had a biopsy of the largest nodule approximately 12 months ago and it was all good. I thought that was the only thing I had to worry about and am annoyed my thyroid wasn't tested for anything other than the TSH levels by either my GP or the ridiculously expensive Endocrine surgeon I saw at the time.
Apologies if I'm not very articulate but I'm a bit stressed by the diagnosis in that I'm concerned about the possibility of developing other auto immune related conditions over time. My aunt's life was destroyed by Rheumatoid Arthritis and given the aches and pains I've been experiencing over the past eighteen months I'd hate to go down that path. Therefore I'd love to hear if anyone else has had any success in improving their thyroid hormone levels with the AIP diet and I'd also love to hear your thoughts as to how advanced I might be if possible. I have no idea as to the significance of my TgAb or TPOAb levels - are they just high or ridiculously high? How do these numbers interact?
I live in Melbourne, Australia so if it's permitted, if anyone can recommend a good GP or specialist I'd be very grateful.
All the best everyone, and thanks for reading - HollyRae
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It doesn't matter, in a sense, how high your antibodies are, because that's not an indicator of the seriousness of the disease. They are positive, that's the main thing you need to know. Antibodies fluctuate all the time - they can even go below range, but that doesn't mean that the Hashi's has gone away - nor does it mean that it's getting worse if the antibodies go really high. Hashi's is a progressive disease in that it slowly destroys your thyroid, no matter how high or low the antibodies. They are just an indicator that you have it. And, they don't really interact with anything else, at all. Antibodies tend to be at their highest, just after an attack by the immune system, because they come in to clean up the debris left behind.
What is important is the level of your thyroid hormones, which don't seem too bad, at the moment, so probably not too much damage done. But, I'm saying that uniquely because of your low TSH, which is a pituitary hormone. I can't say anything about your actual thyroid hormones - FT4 and FT3 - because you haven't given any ranges. Please, always give ranges when you give results. An ultrasound scan would give you more information of the level of damage already done.
So, your AIP diet possibly stands a good chance of helping you - if not to reverse the disease, then at least to control it. Only time will tell. You could also try taking selenium, to see if that helps. But, I don't have any practical experience of all this, because by the time my Hashi's was diagnosed, my gland was practically dead. So, too late to do anything to help it.
Oh, and don't be too hasty in tearing up that neurologist referral. Get your B12 tested first! I think low B12 does more nerve damage than the Hashi's. It's the surgeon you want to avoid!
May I suggest that you delete your earlier post? You'll get confused if you have people commenting on both of them at the same time.
Thanks so much for replying! That's all great to know and I sound relatively lucky. I'm so sorry that your diagnosis was so long in coming. Two things still - how do I delete a post?!? And what do you mean by listing the ranges - do you mean the reference levels? And yes, my B12 and D were extremely low so am taking both from a good Naturopath
Hi - I am new here too but wish you all the best (I am still learning about thyroid etc)
To delete a post - see the arrow at the bottom of the post - same level as the green reply button, click on that and it will bring a drop down where you can delete or edit
Hi - just to continue that point. If you are taking b12 - best is sublingual by the way - you also need to balance out all the b vits by taking a good quality mixed B supplement, ideally with methylfolate instead of folic acid. Also with vit d, it is important to take its co-factors vit k2-mk7 and magnesium. The k2 is to direct the increased calcium uptake that vit d causes to bones and teeth rather than soft tissue, magnesium also helps with bones as well as muscle aches and pains.
How is your ferritin? It is important that is also fairly high.
Thanks Gillian for replying - am taking the B12 sublingually and will take your other suggestions to my Naturopath who I'm seeing on Friday. She admits she hasn't heaps of experience with Hashi's but is really open to learning which is great. Just looked at my Ferritin levels - 98 - whereas the reference is 30-500 - so kind of on the low side I think?
You will see very many of us are on gluten free diet, if not AIP diet.
Gluten and autoimmune issues are not a good mix
Recommend watching The Thyroid Secret by Izabella Wentz. I think you can find it on YouTube
Chris Kresser, DrKnews and Amy Myers are good sites too
Good vitamin B complex to go with B12.
But when taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
I'm hoping I don't have to stay on the AIP diet forever! I can handle going gluten free but the thought of never having dairy again is a tad depressing - sigh.
I find that being gluten free as yourself is also very effective for me . I basically have salmon and salad . Not much more to eat . what I did notice is that I crave now apples . Can I ask you what your eating ? I'm off all dairy and eggs as well . One thing I do have that I'm not happy about is in my Levothyroxine they use potato starch as one of the fillers . I can not understand why ?
SlowDragon ,Thank you . I was under the assumption that your totally off grain and gluten . It's great to know that you can have a lot of variety . I unfortunately I have skin breakouts and I think it may be related to my gut issues . So I started to omit from my daily diet wheat gluten , dairy , sugar , coffee , chocolate , spices . To heal my gut and see if that will help with my break outs . I further supplement with nutrients . I'm off of some I'm due to run labs in a few days .
Hi jgelliss - just thought I'd let you know that I was listening to a podcast with Dr Izabella Wentz and her compounding pharmacist and from their discussion it sounded to me like a compounding pharmacist is able to tailor medications for dietary restrictions. Might be worth checking out if you're trying to reduce gluten and nightshades etc. And I hear you about the apples - I've been allowing myself a Granny Smith per day and it's become my highlight! Just have to wait one more month for the cherry season to start - bliss!
Thank you so much for your concern and advice . Your right I read in the book too Dr Wentz recommends compounding . However the Dr said it's so minute it shouldn't be a problem . Will take a wait and see attitude . Enjoy your cherries .
If your b12 is “extremely low” you may have Pernicious Anaemia. You should not be supplementing until you have been properly tested and you may need b12 injections. I would suggest you should go onto the Pernicious Anaemia forum to get some advice about this there. B12 deficiency is very serious and can cause permanent neurological damage.
Hi, as mentioned before keep the neurologist appointment. I have had Hashis since 1987 which has progressed to B12 deficiency. Supplements will only skew future blood test for B12. If the cause of your low B12 is due to non absorption through the stomach supplements won't help much. It's good you are finding out foods that help, I've found gluten free has helped stomach a lot plus I take probiotics as well as B12 injections. Burning feet & neurological symptoms are both B12 symptoms. Before I was diagnosed with B12 deficiency I had a lot of dizziness, with 2 falls in 6 months, developed vertigo & balance problems. Hope you have a good neurologist to work with. All the best x
If you have auto-immune thyroditis there is a very high correlation with autoimmune gastritis which will affect your ability to absorb vitamins and minerals - including B12, folate, and iron. 10-40% of people who have AIT also develop auto-immune gastritis. 40% with AIG also develop AIT. The exact causal relationship isn't clear.
From the thyroid levels quoted it sounds as if your symptoms at the moment are more likely to relate to B12. Your thyroid would appear to be working at the moment but over time (and it can take a long time) it will be damaged by the thyroid anti-bodies. The most effective treatment for B12 deficiency is injections which by-pass the gut as a means of absorption. In Australia these are actually available over the counter.
Possible that you may also be iron deficient.
Suggest that you discuss with your GP though before self treating.
I was (finally) diagnosed with B12 absorption problems 5 years ago and was hit with the news that I also have AIT quite recently - struggling with thyroid medications as a result.
Your Dr is not sharing information with you because he knows very little or nothing about thyroids . I would suggest you run don't walk a look for a Endo/Dr that knows and understands how to treat thyroid patients optimally . Count your blessings that he didn't miss lead you totally . Ask your pharmacist if he knows of Endo/Dr's that a number of patients come from to fill their scripts . Or ask some of your friends and neighbors .
Feel well and good luck finding a great Dr that knows and understands thyroid and does well by you .
Just wanted to thank everyone for their generous sharing of information - GreyGoose, JGellis, Gambit62, GoldenGirl, MiniMum97, SlowDragon, StartAgainGirl and Cracker10 - my sincere thanks to you all. You've all given me heaps to work with and it's great to know I'm not alone on this journey. Sincere thanks to you all and I hope it's a lovely day where you are.
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