What it is to live with Hashimoto’s disease?

Today’s post has nothing to do with skincare or make-up or fashion. It’s all about sharing my story living with Hashimoto’s disease. It is one of the most misdiagnosed diseases and like many other people I also spent several emergeny  and regular visits to the hospital and after months and months of suffering, I was finally diagnosed with Hashimoto’s thyroiditis.

It’s an auto-immune disease where the body’s immune system attacks it’s own thyroid gland. Thyroid gland produces hormones which regulate a lot of functions in the body like the body’s metabolic rate, heart and digestive function, muscle control, brain development and bone maintenance.

I am now on Hormone replacement therapy, which in simple words mean taking a pill to replace the hormone which my body is not able to produce in required quantity.

Well, normally it should be a happy ending right? The disease is diagnosed and medication is in place.

Unfortunately, Hashimoto’s is a full body condition and although the medication is taking care of optimizing the Thyroxin (Hormone) level in the body, calibrating the dosage amount is one big issue. Each body is different and even when you start with a particular dosage, it seems that body requirements change over time and increasing and decreasing the dosage is as tricky as walking on egg shells. My doctor suggested an increased dosage and I had to rush to the emergency (ER) as my body started to shut down and I almost felt that I am having a cardiac arrest.

Another problem is that there are related body functions especially liver functions that get affected in Hashimoto’s condition, which the Thyroxin dosage cannot take care of. I am severely deficient in Vit B12 and Vitamin D, for which I have to take regular supplements in the form capsules or injection.

What frustrates me is that even Endocrinologists do not think of this condition more than a simple case of hypothyroidism where you want to control the thyroxin level  by prescribing a certain drug dose. My doctor did not understand any of the symptoms because according to her I am taking  the dose  and that should suffice.

Depression, chronic fatigue, anxiety, dry skin, hair fall, brittle nails, migraines, vision problems, weight gain are some of the very common symptoms of this disease or at least what I have. What frustrates me even more is the pseudo-intellectual people, who try to tell you that oh don’t worry, it’s a very common condition. I don’t know what they want to convey here? Delivering a baby is also very common but you cannot take away the fact that each labor is as painful as it can be, just the duration of labor may vary.

Although, leaky gut is a commonly associated problem in Hashimoto’s patients, my doctor did not feel the need to prescribe any change in my diet. It was only after reading a lot about it myself and seeking forums for Hashimoto’s support group, and several videos on You Tube made by the patients themselves, I came to know that diet plays a significant role in improving your condition.

Hashimoto’s disease is a chronic condition but what makes it worse is the insensitivity of Doctors /practitioners. But I guess, no one really can understand what chronic fatigue is, unless they feel it themselves. One day my neck was swollen twice its size and I could not lift my hand to feel the swelling or walk up to the mirror to see why I cannot breathe and feel as if someone is strangulating me (I was home alone). This is how fatigued your body is. Joint pain and muscle pain are so bad sometuimes that you really wish you were in coma to not suffer like that. You cannot help but wonder when someone shows one strand of their hair and say “OMG I am having bad hair fall these days”. Because you know what real hair fall is- its chunk of hair coming off when you casually run your fingers through your hair.

I literally feel at least 40 years are added to my current age, because that is how weak and tired I feel on some days. Sometimes, I have to stop and catch my breath after walking 10 steps.

Life is definitely not normal for me anymore. Actually since November last year, it has gotten worse and , I have completely forgotten how does it feel to not have any of these symptoms. I was diagnosed in February and most people especially back in India said once you start the medication, you will feel so much better instantly. Well I did feel better but only after three weeks of medication but then the improvement is not consistent. Suddenly there are days when all the symptoms are back.

The only time I feel normal is when I read a post about someone talking about the same condition, because I can totally relate to what they are saying.  I felt the need to write about my take on this disease, because I felt it was helpful to read other people’s struggle and success story. I wish there were more support groups for people like us who are fighting every day to get up from bed, live a normal life, beat the depression and still smile because honestly, for people suffering from Hashimoto’s disease, there are no get well soon cards and bouquet of flowers, simply because a person suffering from this chronic disease has all the symptoms of a regular person who is not fit, who is lazy, who is depressed for no reason, and unfortunately for some people these symptoms are all made-up. Strong contenders for the cards and bouquets are people who have cast on their fracture, bandages on their body and/or are hospitalized for some condition (although I do have sympathies with them too, it is never good to suffer physically and mentally).

One appeal I want to make through my post is for everyone to be a little more sensitive to people who you know, suffer from Hashimoto’s thyroiditis. It is often a very misunderstood chronic condition but just like any other disease it does take a toll on the patient’s emotional and physical well-being.

I read somewhere, that it doesn’t matter to the Doctors if you have hypothyroidism or Hashimotos’, because all they can, anyway do is to prescribe Levothyroxine. The drug you have to take throughout your lifetime.

There are several examples in the internet, where most people were misdiagnosed for years and in the end were put on Levoththyroxine. But ultimately Yoga, diet change and meditation were the combo that worked well for them.

After being on the dose of Levothyroxine and not much progress made, I decided to make some lifestyle changes myself,  like adopting gluten-free, sugar-free and dairy-free diet. Alongside, Yoga and meditation are really helping me to stay away from mental fatigue (memory loss, brain fog, diminishing cognitive skills are some more symptoms we have to fight).

I am thankful that I have very supportive people around me and of course people who say oh well don’t worry, it’s a common condition, I do not hesitate to cut my ties off with them as there is no place for passive-aggressive, negative, ignorant  people in my life.

This is indeed a new beginning for me!

Thanks for reading and I wish you great health and joy.

xoxo

Saabri

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19 thoughts on “What it is to live with Hashimoto’s disease?

  1. Thanks for shariing your story. You are so not alone. I have had the frustration recently of asking a doctor to advise about getting off my Thyroxine and how I can reverse the condition. I was dismissed. I asked about leaky gut and she said its not proven to exist! Time to get a new doctor. There are so many women who dont even know they have it. Its our job to increase awareness and educate .

    Liked by 1 person

    • hey thanks a lot for your comment. good luck to you for your health, it’s so frustrating really. It just amazes me how insensitive doctors are toward Hashimotos. but as you said building a community that shares their experiences and support fellow patients is the best we can do. Also as an update going for long walks ( 10-11 Km ) everyday has helped me immensely to beat most of the conditions. This condition goes beyond thyroid and hamper life in general, so it calls for lifestyle changes really. Hope you feel better and thanks again for your kind comment.
      xx
      Saabri

      Liked by 1 person

  2. Thank you for sharing.

    Our heart goes out to you.

    First do no harm, is the Hippocratic Oath that
    every doctor takes, yet in this age its seems
    that the patient is often more knowledgeable
    than the professional that is supposed to help.

    Sending you good vibes & energy from Miami.

    Liked by 1 person

  3. I am a fellow sufferer! I have all the symptoms, and the hashi antibodies, but have no change in my thyroid numbers. Doc sent me on my way and recommended I see a psychologist/psychiatrist for the depression and anxiety, exercise more for my weight gain issues and basically just sit back and wait until the thyroid burns out so I can have meds. And then “everything will be back to normal”. And in the meantime? Have fun, see ya in a year for more blood work. Apparently I’m just a hysterical female! Thank goodness for the internet and all the info on the diet changes! They have helped me so much (along with Vitamin D, B, and iron!). Wishing you all the best in this shared journey! XO

    Liked by 2 people

    • Hey thanks for stopping by ❤️🌺❤️
      I totally understand the frustration you must be feeling. It’s outrageous ow ignorant doctors cannot see beyond the lab report, unfortunately for which reference range is anyway too broad and many patients go untreated because they are not in the lab range. Arrrgh , it’s so common for them to refer us to psychiatrist and counseling, but unless the root cause is treated well, how can they expect for symptoms to go away. I am so glad myself to have found some help in the internet. I hope you feel better and start the medication soon. Although hormone replacement is tricky because of the dose caliberation, it is still helpful to fight against some symptoms.
      Thanks once again for sharing your thoughts as this gives immense support to all of us who are in for the fight against Hashimoto’s.
      xx
      Saabri

      Liked by 1 person

  4. OMG girl!!! I didn’t know you are suffering so much. It is so very brave of you to share this. Would changing the doctor help or they are all alike? Thanks to so much of information online that we can still find few workarounds but this is a doctor’s job. During my pregnancy I experienced that they really don’t tell you much about the precautions and diet. They assume you have elders at home and if not you always have internet. I mean seriously??? What are you there for then? I hope things get better :* :*

    Liked by 1 person

    • Aww thanks hun😘, yeah I know. I am so surprised that Doctors feel medication is a panacea for the diagnosis. I sometimes feel it’s the business model, if they will start mentioning diet changes and other related stuff, they will run out of business for not selling as many drugs, the pharma companies want them to sell. I am not against medication, but just the lack of empathy that I experienced and unfortunately I am not the only one, from Doctors is not pleasant at all.
      But thanks for your kind words 😘❤️ and wish you a lovely day.
      xx
      Saabri

      Liked by 1 person

  5. It’s post like this, that really do make a difference. Hopefully people who experience this condition, or know of people who do, can read, and have a new understanding.
    I can’t stand judgemental people. Ignorance in my opinion, stems from a lack of education.
    Hold your head high, because you are the one fighting and becoming a better person, they are the ones with minds of negativity. I wish you all the best in dealing and I hope the lifestyle changes, continue to help. Xxx

    Liked by 1 person

    • Thanks Laura ❤️😘yeah I decided to write my thoughts on the issue in hope that someone going through similar hell gets some comfort when they read this. I certainly get inspired and feel accepted when I read other people’s stories. Thanks for your kind words dear, they will certainly go a long way for me.
      Yeah lifestyle change was long overdue I guess, I can already see what difference it can make. Thanks once again for being so kind and empathetic, we need more people like you in the world.
      Sending you hugs,
      Saabri

      Liked by 1 person

  6. Oh Saabri, it melt my heart to read through your pains and struggle. What makes me mad is that highly educated Doctor’s being ignorant on the diagnosis. Thanks for sharing your story, it definitely gives strength to people who is going through the same pain. I wish you more strength dear.

    Divya

    Liked by 1 person

    • Thanks a ton Divya , your kind words are truly very soothing to my morale. Thanks a ton 🌺❤️ Yeah it’s very unfortunate that Doctors are so limited in their knowledge when it comes to Hashimoto’s . Sending you hugs my dear ❤️😘😘
      xx
      Saabri

      Liked by 1 person

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