Hashimoto's Thyroiditis & Pernicious ... - Pernicious Anaemi...

Pernicious Anaemia Society

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Hashimoto's Thyroiditis & Pernicious Anaemia - Please share your story.

AutoimmuneAnnie profile image
10 Replies

Hello everyone, I have the two conditions above. I was diagnosed with Hashimoto's 26 years ago and Pernicious Anaemia 11 years ago. I also have chronic urticaria which I suspect is also autoimmune. These conditions have severely impacted on the quality of my life and caused a lot of suffering and despair. I know there are many of you out there that also suffer with these conditions, I don't stand alone, although sometimes you can feel very alone with autoimmunity.

I have driven myself crazy going to different doctors over the years trying to get them to understand that despite supposedly 'adequate' treatment for both conditions, 'I still don't feel well'. I feel so frustrated and fed up that these conditions have dictated my life, my choice of career, whether I can go on holiday this year or not, whether I can socialise with friends this weekend etc. etc. I have spent many hours trying to understand and educate myself about these conditions. I have read different books by both experts in the field and patients. I have read research papers. I have gone gluten free. I have self medicated with both Natural Desiccated Thyroid for Hashimoto's and Hydroxocobalamin for Pernicious Anaemia.

But, despite all of this I still don't feel well........... There is something missing........

And this year I am determined to work out what that is. I am going to take back control and start at the very beginning, leave no stone unturned and try and find the root cause of my autoimmune problems. First stop, an appointment with a nutritionist/functional practitioner. I will find a suitable platform to share my progress.

In my quest for optimal health I would love to know what works for others who suffer with these conditions. I am calling on people to share with me their stories. How you are affected by both conditions? What is your treatment regime? What works for you? What doesn't work? How does it impact on your life? Do you feel well despite treatment?

You can PM me if you prefer. I look forward to hearing from you.

Wishing you all a happy day,

AutoimmuneAnnie

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10 Replies
Secondchance profile image
Secondchance

I wish you the very best of luck!

AutoimmuneAnnie profile image
AutoimmuneAnnie in reply toSecondchance

Thank you Secondchance, Have a great day!

ashlee11 profile image
ashlee11

I am working with a natural guy. He tells me sugar is the culprit. Off all. And to add good gut flora. Like probiotic foods twice a day. His name is truth calkins in Arizona. Try utube

AutoimmuneAnnie profile image
AutoimmuneAnnie in reply toashlee11

Thanks ashlee11, that seems like good advice. I am going to give my diet a complete overhaul. I gave up gluten last year and it made such a difference to me but now I am struggling again, hence the reason to go back to square one and look at everything. I have read many times that all autoimmune starts in the gut, so I am going to work with my nutritionist to work out what foods are causing me problems and what foods will be good for me and I am also going to take some tests to check for malabsorption etc etc.

MariLiz profile image
MariLiz

Hi Autoimmune Annie, I too have a thyroid problem, although I've never been officially diagnosed as Hashimoto's I suspect it is autoimmune. I have low B12, and have also been told I have fibromyalgia. My life has changed so much in the last few years, from being regularly active to becoming more and more sedentary. The pain in joints and muscles can be so bad at times it is completely debilitating. I haven't gone gluten free yet, although it is something I am thinking of trying. I use a B12 boost spray between eight and twelve weeks, whilst waiting for my three monthly injection. My GP won't refer me to an endocrinologist because TSH looks OK. They won't test anything else. I will be really interested to hear how you get on, and if you can find a way to feel well again. Best wishes MariLiz

Bluedragon profile image
Bluedragon

Have you considered going right to the beginning and doing a genetic test? 23andme have just received mine... Should be interesting.

AutoimmuneAnnie profile image
AutoimmuneAnnie in reply toBluedragon

Hi Bluedragon, thanks for your comment and yes that is something that I have considered. I am attending the B12/Thyroid conference in Loughborough university on Saturday 16th May. There is a talk about genetics which I am particularly interested in.

What did you learn from your results if you don't mind sharing?

AutoimmuneAnnie

Bluedragon profile image
Bluedragon in reply toAutoimmuneAnnie

They've just received my sample- I have to wait 4-6 weeks now for results. The conference should be interesting!

AutoimmuneAnnie profile image
AutoimmuneAnnie in reply toBluedragon

Gosh, that's a long wait. Hope it reveals something for you. Good Luck!!

Lynne0762 profile image
Lynne0762

I don't know much but found this: TSH Levels T3 and T4 Levels Disease Condition

High High Tumor of pituitary gland

Low Low Secondary hypothyroidism

Low High Grave’s disease

High Low Hashimoto’s disease

Those with Graves’ disease (an overactive thyroid) have high low TSH and subsequent high thyroid hormone levels. Hashimoto’s disease (underactive thyroid) is the opposite.

LOVE GOOGLE! :) My best to you.

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