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Autoimmune disease

Positive stories of Hashimotos Thyroiditis Please

16 replies

Emmasian94 · 31/10/2022 12:11

I'm recently diagnosed and I'm panicking a bit. I'm only 28 and seem to have developed many problems after having my little one last year. Hashimotos being one of them.
Can someone please give me some positive stories?
Everything I've read seems so doom and gloom. The main thing scaring me is that anyone who has it is now more likely to get other autoimmune disorders. This worries me so much. Doesn't help that I have health anxiety and have also just had gallbladder surgery.
Thanks in advance xx

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Sarrah1 · 31/10/2022 12:20

I don't think you need to worry. I've been diagnosed 20+ years ago and this diagnosis didn't impact my life...take your medication as prescribed and get blood tests done 1x per year (or when you feel that anything is off, e.g. you're more tired than usual) to see if your dose needs adapting, but other than that, I don't think you need to be concerned.

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Emmasian94 · 31/10/2022 12:22

Sarrah1 · 31/10/2022 12:20

I don't think you need to worry. I've been diagnosed 20+ years ago and this diagnosis didn't impact my life...take your medication as prescribed and get blood tests done 1x per year (or when you feel that anything is off, e.g. you're more tired than usual) to see if your dose needs adapting, but other than that, I don't think you need to be concerned.

Thank you for your reply. I think I'm just adapting and it's still sinking in at the moment. Have you changed other aspects of your life? Diet etc xx

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KalaniM · 31/10/2022 12:29

I think a lot of people change their food habits and help rebalance their immune system. Cutting out gluten, taking good Omega 3 ‘s is a good start.

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Sarrah1 · 31/10/2022 12:39

@Emmasian94 No, I didn't. When my blood tests showed that I am low on Vit D, I started to take supplements (as described by my doc). I wouldn't panic now or change your lifestyle. When I asked my doc whether I need to change my diet because of the low Vitamin D, they told me that with my particular condition it would be impossible to get to a normal Vitamin D level without taking supplements. Also, (although I am very wary about talking about anything medical on here because I am no professional), I don't think that this condition usually links to a weak auto immune system. I never get sick, my entire family (who doesn't share this diagnosis) get sick far more often. I wasn't in a COVID risk group (I checked) and didn't qualify for getting my COVID vaccine early two years back because of this condition, I wasn't considered to be at higher risk than other people of my age.

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Emmasian94 · 10/11/2022 23:39

Has anyone adapted their lives? Dietary etc?

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VictoriaBlossom · 20/11/2022 08:55

Emmasian94 · 10/11/2022 23:39

Has anyone adapted their lives? Dietary etc?

Yes, I was diagnosed in the height of covid, so at the time petrified of health services.
I felt horrific and after a colleague accused me of being drunk at work because I was slurring my words I booked a phone gp appt.
She booked me in for urgent bloods at 10am, and at 5:30pm she rang me asking for me to go to hospital right away.
Explained it was UAT, I said no, said I would rest and drink a lot. I had a kidney function of 30% so it was beginning to affect key organs.... many years of undiagnosed and untested UAT does this.

Meds went up every 3/4 months, ended up on thyroxine 150mg.
Last month I felt rough, craps, anxiety, unable to sleep, and made the call to the dr that I needed more bloods.
Repeat of diagnosis day, went in at 10am, phone call after 5pm, Im now massively overactive.

Which has been due to lifestyle and diet changes, and taking pre conception vitamins...
so I've gone from 150 to 75.... and still feel overactive.

Cut out gluten and processed food. Which really isn't as hard as I thought. I will still have the odd piece of garlic bread but that's it.

I always felt like UAT would affect me for life but I'm hoping to reverse it.

Not everyone is able to do this, I think it's dependent on how your body is and how badly damaged your thyroid is.

Lots and lots of reading, that's all I can say.

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JuliaGooliaaa · 20/11/2022 08:59

Honestly it’s had minimal impact on me- diagnosed over ten years ago. Just take thyroxine and adjust (as per doctor) when levels are off. Didn’t change my diet/cut out gluten and I’m fairly healthy overall.

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Emmasian94 · 20/11/2022 10:07

JuliaGooliaaa · 20/11/2022 08:59

Honestly it’s had minimal impact on me- diagnosed over ten years ago. Just take thyroxine and adjust (as per doctor) when levels are off. Didn’t change my diet/cut out gluten and I’m fairly healthy overall.

Thank you so much for commenting this. It makes me feel much better xx

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DarkMatternix · 20/11/2022 10:14

I was diagnosed at 25 (now 42). It has had very little impact on my life. I take a tablet once a day and have a blood test once a year and that's it. I was also diagnosed with coeliac disease a couple of years later, that's had a far greater impact on day to day life but I feel so much better not eating gluten that I can cope with that.

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RenegadeMasterx · 27/11/2022 02:12

Hate to say it but I have this and it has taken over my life. I have no energy, ever. I am being tested for a malabsorption problem aswell as I too had my gallbladder removed but I'm on 250mcg of levo a day and still feel like shit. Could sleep my entire life away. My mood is horrendous and changes like the f*cking weather, actually I've been diagnosed with bipolar type 2 (depression) because no one can get my ongoing depression and anxiety under control. I am questioning this however as I don't tend to have any other symptoms of that just literally had a totally flat mood for around 11 years. Feel like someone's strangling me constantly I had an ultrasound on my thyroid last month and the sonographer basically said it's enlarged and lumpy and 'unhappy'. I ache head to toe. It's been utterly miserable for me and I don't know where to turn I am under an endocrinologist but only seen her once and I've had this problem 10 years. Sad I think my case is a little unusual and probably sounds extreme but it's ruled my life for so long. Hope you're ok OP xx

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RenegadeMasterx · 27/11/2022 02:14

Oh sorry elaborating on the bipolar thing, the lady who scanned my neck said she scanned a lady not so long ago who's mother when she was alive was put into a psychiatric hospital due to poor mental health, underwent assessments, had no MH problems it was her thyroid all along. It controls almost everything including your mood etc it's so important it's controlled properly! She was a new woman when they got her fully under control. X

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Kel787 · 09/06/2023 21:11

I don’t no if this blog is still active or can someone point me in the right direction
I have been trying to conceive over 4 years had a miss carriage at 8 weeks in 2021 and a bio chemical April 2022
I had my tsh level checked and my tsh is 0.2 I have read that to have a stable pregnancy and to conceive your tsh levels needs to be between 1 and 2.4 the months I conceived my tsh levels was 0.71 with my misscarriage at 8 weeks the month I had a chemical my tsh was 0.60 I haven’t been able to conceive since I believe it is because my tsh is so low I have tested negative to Graves’ disease and Hashimoto’s disease, lupus and celiac so the endocrinologist done a thyroid scan with iodine and said my thyroid is inflamed so suspects Thyroiditis but said there’s no treatment what’s so ever to get my tsh within range and that Thyroiditis has to go away on it’s on I believe it’s reacurring Thyroiditis and won’t resolve on its own so there for my tsh will not rise If it’s not treated can anyone help me or point me in the direction of endocrinologist that will treat a low tsh or prescribe me something to help me I have read ladies that was prescribed cambrazole I think that’s what’s it call and thyroxine was able to get there tsh stable and high enough within range to conceive please help me

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VictoriaBlossom · 09/06/2023 23:19

@Kel787
I conceived with my TSH 0.2
I also suffered a mmc last year, TSH was above 4

Are you taking prenatal vitamins? And are you taking thyroxine

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Kel787 · 09/06/2023 23:22

@VictoriaBlossom im not taking prenatal vitamins I am taking vitamin d folate b12 and coq10 all recommended by my fertility clinic and no I'm not taking thyroxine when you conceived with 0.2 was it a successful pregnancy?

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VictoriaBlossom · 09/06/2023 23:26

@Kel787 sat here at 21 weeks

Have a look in to pregnaplan by Cytoplan
And try a fertilily cup

Friends of mine rave over them.
Our pregnancy this year was a bit of an unexpected one as we had a huge family holiday booked and I didn't want to be pregnant for it

Currently sat in Jamaica with a glass of water because the family holiday is now

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Readbecgar · 04/07/2023 21:07

RenegadeMasterx I totally feel you I was diagnosed in feb 2023 and currently on 100mg levo. Some days I feel ok but most the time I feel like absolute shite.. I have a 9 month old too.

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