Can anyone relate? This journey has been so frustrating!

Posted , 6 users are following.

Forgive for what may be a long post to come... 

I have been battling to get my levels within the normal range for 4 years. I get on one dosage, it levels out, and usually within a couple months they do bloodwork and levels are off again. Meds go up, down, up, back and forth, take this, take that, up down again... Long story short and the point to this- I WANT TO FEEL NORMAL!

Here's my story- I am hypo, with hashimoto's, and a cystic nodule on a slight goiter. My thyroid is so out of whack. Doc says it slighty works, so it makes the hormones SOMETIMES (I said lets just take it out, she laughed and said thats not the answer...) 

My weight is ALL OVER THE PLACE. I love to workout- its a huge part of my life and my relationship with my husband. I go to the gym 5-6 days a week, I do cardio, I lift weights, I seriously love it! As far as diet goes, I do not drink soda, I do not eat fast fast, I cook homemade food for my family every day. I get my fruits, veggies, proteins and carbs in. We occasionally splurge and go out for fun- usually sushi or at the very least a decent place. So all in all, I think I live a decently healthy lifestyle! 

Here's the problem (along with the hormone levels) I keep gaining weight. I know in my heart I am not overeating, and I am making an appointment to go back to the Doc to have levels checked, and I am positive they are off again. My husband can even notice when my levels are off. I get extremely tired, irritated, angry... but now, I am gaining weight. He hasn't said much about that, but the scale doesn't lie, and I know its not muscle from working out. I don't know what to do-- I even took the month of Feb to do a strict cardio plan and the number keeps going up. 

Does anyone have any advice on what works for weight management/hormone level management or any of this?! I am so frustrated that I have to live with this for the rest of my life....

Thank you for any advice you can offer! 

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8 Replies

  • Posted

    I can't tell you how much my outlook and mood changed after I gave up gluten. No cheats. 100% gluten free. If you cheat it can fool your system for another six imonths. Once that was off the list I then gave up all soy. Dairy is next on the list. Harder, but doable. And yes, weight was persistent until I made dietary changes. Keep off the scale and go by measurements. 
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    • Posted

      Thanks for the reply :-) I have been tested for gluten sensitivity but that test came back negative. My measurements dont change much so I dont understand how I can gain lbs without something really changing. Were you tested before giving up gluten or did you just try it out and decide it worked?? I have heard to give up dairy, but my Dr. says thats not true... Maybe I need a new doctor... 
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    • Posted

      I didn't go through any testing for it. I just gave it up and in two days felt  better. Ate gluten again and felt terrible. No brainer! The molecular structure of gluten so closely resembles that of the thyroid gland so there is no argument about trying to give it up. What do you have to lose? You don't need a new doctor to give up gluten. wink Honestly? I will never eat it again. And I love it. Now I see it as poison. It's a total game changer. Research it with hashimotos and find out. 
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  • Posted

    Often in autoimmune conditions like Hashimoto's thyroiditis, there are periods where the immune system decreases its attack and symptoms can begin to go into remission for a period of time. In the case of Hashimoto's, it is when this happens that the thyroid may recover slightly and start to produce its own hormone.

    However, when treated with adequate amounts of thyroid hormone medication, the pituitary should regulate these levels and prevent the thyroid from forming additional hormone if you're taking enough. This is why TSH levels are tested to gauge the effect of treatment. High TSH generally suggests that there is not enough hormone present and the pituitary is attempting to stimulate the thyroid to release more, whilst the opposite will occur if there is too much present.

    If the thyroid is producing additional hormones at times, even when properly medicated and TSH is within range, this could suggest thyroid autonomy, where the gland is acting of its own accord rather than responding to signals from your brain. This is more likely to occur when goitre and nodules are present, and can be diagnosed with an iodine uptake test. Otherwise in the absense of this condition, the thyroid shouldn't produce extra hormone during periods of recovery if everything is at the right level already.

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  • Posted

    Hi Rachel, weight gain is usually a hypo symptom. I suffer with weight gain when my levels are too low. When they get back to normal, I have to still fight quite hard but my weight generally starts to drop off again. If you start gaining weight and you know you are eating well and exercising, go back to Gp get levels tested and probably means you need an increase in meds. Some people need their levels to be at the top end of the "normal" ranges to keep their symptoms steady. I am with you, it is infuriating when you pile on weight for what seems like no reason at all.
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  • Posted

    Hello Rachelw:

    My name is Shelly and I am a nurse in the USA.  I was diagnosed with Hashimoto's in 1987 and I am now 54.

    I have had the disease all of my adult life.  I was always having problems with Levo back when I was young.  I must have tried every medication for the thyroid around. I was on Liotrix, then Armour Thyroid and finally just T3 called cytomel or liothyronine.

    It was the Cytomel (brand name) that made me come alive and I do not take any T4 at all.  Somehow part of my thyroid is damaged and will not convert T4.

    As to weight: after you get a medication that works, you can work on weight.  I lost 32 pounds doing walking and diet control.  Cut out the gluten and dairy.  Watch sodium in the diet as it can cause water retentsion.  Eat fish, lean meats, chicken, watch carbs and starches or avoid them totally. 

    Get a blood cortisol level as high cortisol can stop you from losing weight.  Have your blood glucose checked also.  Sometimes thyroid disease can bother other organs like the adrenals and pancreas.

    Nobody wants the disease but it can run in families as my Hashi's does.  It can also come from a virus calle Epstein-Barr or Mono so you can have a titer done for that to see if you had it.

    Keep your spirits up.  Any questions just ask,


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  • Posted


    What worked for me was eating a diet with no processed or refined foods, low in carbohydrates. No white sugar, no dairy, no grains, no soya, no corn or corn priducts e.g. corn syrup. And switching to NDT. This diet was forced on me by allergies and intolerances but it works great for weight loss. Are you cinvertung the levo (T4) to T3 properly. Post your blood test rresults and peo ple will help you interpret them. Are you getting the best out of your thyroxine by taking it on an emoty stomach an hour bbefore you eat and not eating until 4 hours afterwards? Is your Ferritin level 70+. All these things are reported to help the processing of thyroxine.

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