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Thyroid UK
90,438 members • 104,806 posts

New here untreated and undiagnosed Autoimmune Hashimoto's, got my first flare up

I'm unable to get any help now since I am now 27 live with my mom because of severe debilitation. My mom wont let me speak of it she's so ignorant and in denial that im sick, im starting to believe if this flare up and her pressure of all this anxiety on me will cause me to end up in critical condition. I'm so scared I am nearly forced to go make a gofundme and see if any close relatives even believe me im losing my mind, has anyone else been through an untreated flare up and if so what should I expect?

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Hi Sasha, what a difficult situation you are in. It probably hurts your mother to see you become so ill. Sometimes gluten is the culprit for attacks. Are you positive that you have Hashimoto's?

Are you in the UK? Here is some information for you.

stopthethyroidmadness.com/t...

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Yes i've never been quite properly diagnosed but with the maelstrom of pure nightmares and symptoms that have been progressively deteriorating my body I am now 100% positive it's Hashimoto's, i've been to countless Conventional Doctors and turned away only after having only my TSH checked and I am losing so much energy and the strength to go on. I finally cut gluten out I definitely had a flare up anxiety/gluten/soy etc. were most likely the culprits. I am now researching Paleo and other diets to at least get through this flare up.

Unfortunately i'm not in the UK but everyone here seems to be so supportive and im losing people to talk to in my life about any of this. And thank you very much for the link :)

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Sasha, in a perfect world you would get thorough testing for thyroid, adrenal and other factors involved. If you are in a situation where you are unable to get any sort of treatment you could actually pursue your own treatment. There are almost all the thyroid and adrenal supports you need and they are available.

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Sadly this world is flawed in many ways I do certainly agree, I shall definitely do some info digging. I don't want to give up on everything at this point I need to continue hoping I can find help and know someday ill hopefully feel better too. Also my mom is now paying for my health so unfortunately because of her skepticism I am not certain ill get the support or help I need before something critical happens so I am very worried at this point in time.

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A blood test for thyroid antibodies will tell you if you have Hashemites. In the UK we can order these online and they are not very expensive. I'm sure these are available overseas as well. Can you research?

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Thank you for your reply if all goes well regardless of who it is I should be able now to receive this and every test ive been needing :) We definitely have the TPO test here as well ill be emailing my family friend all the information.

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I hope it goes well for you. Once you have a diagnosis you should get more support and there's lots of stuff out there you can print and show your Mom!

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Thanks so much, I hope so too :) and for closure ill be directly going to each doctor for an apology who turned me away regardless of their replies as this would help me emotionally to move on. I shall definitely be going through any information once I get a diagnosis so she can try and learn more about my illness.

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Oh Hun I'm so sorry that you're going through this hell. I'm new to all of this and I'm sure someone much more experienced will be along very soon to help and support you from the forum. They are all wonderful, helpful and understanding.

My husband thinks I'm putting my symptoms on to get out of housework and administrative paperwork. You know yourself, during a flare up the last thing you can physically let alone mentally cope with is others doubting your condition, especially when you don't necessarily look that ill.

Please try to stay strong, I have no advice just a heartfelt virtual hug to send your way and reassure you to hang on in there until someone else is about to help you.x

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Thank you so much for your kind words! Even small words of support at this point keep me going it's all I have left. I'm only able to continue on with others who listen and understand how painful an ordeal it is.

I will do my best to fight on until I get help possibly sooner than later I've been in dark places so many times, I lost count wishing I didn't have to feel this way anymore.

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Keep coming back to this site.Keep posting.Its a community of friends who understand & support when things look bleak.There is no substitute for talking to folk who understand because they have & are experiencing the same issue-thyroid illness & its impact on our mental & physical health.

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My husband tries his best to be tolerant,but if you haven't experienced the impact of this illness-especially on mental & physical health, its hard for "The Well" to see past the brave faces we put on.On top of that I feel guilty,ashamed & inadequate.I am only responsible for housework & administrative paperwork(I'm 66)but I really struggle to find the mental & physical energy to keep up.He on the other hand has the energy & get up & go of a man at least 10 years younger & is fairly driven.

I desperately need to keep coming to this site to remember why I am struggling.I get hope & support as well as an improvement in my symptoms.I get emotional support with this isolating condition.

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I understand this pain entirely, although im only 27 I am debilitated with a low-income mother and for so long before tonight she didnt understand a single thing my body was going through, usually she just yelled at me for being lazy and my brain fog made me forget things often garbage day etc. got an earful for that as well. The very large lack of support from family and friends for me as well is incredibly isolating and terrifying, the mere fact that anyone healthy cant comprehend how sick and tired we are everyday even the smallest task seems so difficult my absolute condolences to you as well there is so much loving support here and the love of a family friend tonight has blessed and unburdened me so greatly I have finally found a light in a very dark place!

I as well feel coming here has helped me so much just from the overwhelming help and support in here, it's wonderful to understand one another. I wish you the best in moving forward with courage and any strength you can find and likewise I shall do the same small happy things help too :)

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Thank you for your kind response.Two comments I want to make.Firstly,thanks to the wealth of direct knowledge,experience & support on this site,I am HUGELY improved from the state I was in,January 2011,when after being on thyroxine since 1997,my health nose-dived due to stress & exhaustion.I then endured 2 years of depression with severe anxiety followed by 2 years chronic fatigue.On this forum I have learnt how to take control of my own health as much as I can,self-medicate,take the right supplements,etc.I now make sure I get all the rest I need & I am able go to to yoga,meditate daily,swim every week.I enjoy gentle cycling & walking & have learnt to prioritise my health over the state of the house & garden!It doesn't stop the negative feelings I listed above,but I'm not letting them interfere with making sure I don't crash again.

The second comment is related to this.If we don't take care of ourselves & put our mental & physical recovery & well-being at the top of our priorities,we are in danger of crashing,with the result that we are unable to look after ourselves let alone other dependants,so its in our families' interest that we are encouraged to get the help we need,otherwise they will lose out.

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Sasha, whether it's hashimtos or something else you sound sad. I won't give medical advice but will say I'm here for you if you want to talk x

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Thank you so much it's been a very difficult road for me, I shall definitely speak to you should any negative things happen. Always room in my life for any form of support!

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Always here, pm me if you ever need to talk or just rant :)

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I wanted to update everyone on something wonderful that happened just tonight, I was ready so many times to end everything even today I told my mom loudly "I love you, Goodbye!" about ready to down my Geodon and well just tonight our family friend who is also an actual physician saved my sanity and ultimately my life, she listened to me for 2-3 hours just crying and pouring my heart out for everything ive been through these last 10 years building up into autoimmune and she actually cared so much. She told me to speak with my psychiatrist and if he doesn't order my tests she'll order all of them until we can find what I am sick with! I am so happy, so overwhelmingly unburdened and so ready to relax and know im finally going to get some answers <3 I dont even know how I can ever repay her kindness so many years so much isolation and fear I feel free FINALLY! This in itself is a pure miracle for me! Thank you so much to all who have replied I feel so much compassion tonight and I feel very blessed right now :)

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my husband ,daughter and grandaughters can all confirm that hashimotos is hell the constant round of antibody attacks even gluten free are exhausting and have a severe impact on life

add on the medics failure to test correctly which therefore misses the often concomitant Central / pituarity hypothyroid wherby TSH will always be LOW and thus must never never be relied on and its no wonder people are left in a bad situation

correct tests for diagnosing hashimotos hypothyroid which must always be done are

thyroid antibodies

TSH

free t4

Freet3

ferritin

folate

b12

vit d3

all are interconnected and levels are critical

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My heart goes out to your family <3 I can absolutely understand the nightmare that they've dealt with, flare ups and attacks are exhausting, sickening and very terrifying.

I couldn't agree more with todays conventional medical practices they dont even try to hear me out at my current hospital it's simply 'TSH is normal, you're fine!" this tells me nothing except that they're incapable of helping or caring.''

Thank you tremendously for the list of necessary tests, I am going to forward these to my family friend as this will help me get my answers :)

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be very very certain to ask the direct question " but if its central hypothyroid or tertiary hypothyroid TSH will always be low and cannot be used "

chances are they are very last thing they have thought about because they think its rare its not all my lot have central hypothyroid as result of hashimotos and were diagnosed with a tsh of 2.9

they all are also not well on levothyroxine but are fine on natural dessicated thyroid

you may have to order that and self treat

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O lovely hashimotos...please go and get the tpo test ...it will tell you if you have hashi...I was diagnosed for the first few years I could manage it...then I became very ill... antibodies in the hundreds...five nodules grew. I couldn't go anywhere without being sick. My tsh was normal!!! But yet I was no longer even feeling like driving...I went to an endo...I had multiple biopsies...scans... ultrasounds etc..I decided to see an ent. He said I needed a TT stat...I fought it for a year.. I finally was ready to get it out. He performed the surgery and I has hash as well as cancer. I'm not telling you this to scare you..I want to raise awareness...Hashimotos is no joke and sometimes it just progresses. .I am now about to receive RAI...if you get modules and you are highly symptomatic get it taken out ...I was told I didn't have cancer five times..when I did...tests are unreliable...it's not worth the risk. Now if my antibody numbers remained low..that would have been different but it wasn't. Get the proper testing...TPO...I know what you are going through...I had hashomotos...I was tired ..my body hurt. Low d levels.. low vit b12. Low iron. I wish you luck. And prayers to you

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