What is everyone's experience - symptom wise? I'm so confused

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I've been apart of this group for a few months and notice that everyone has had different experiences with hypothyroidism. My doctor never told me anything about it other than it can create some anxiety so joining this has been an eye opener. I'm really curious as to what is considered normal symptoms?

Last year, I thought I was going insane. I had increased anxiety to where I was having multiple panic attacks a day. My body felt heavy and weak and I was dizzy (still am). I also have numbness in my forearms and shins. I went to doc who did blood work and found low thyroid. She gave me levothyroxine .5mg and my levels are back to normal. The anxiety has decreased but if I miss a dose or two, I pay for it. And the rest of my symptoms are still there with intermittent numbness, body fatigue, (I've been to 3 neurologists, have had MRIs out the butt, nerve tests, etc..) no one can find out what's wrong. But it all started same time they found my thyroid was low.

I read a post on here and got curious so I looked at my blood work and it only showed TSH. I didn't see anything about T3 or T4 that everyone talks about.

Can someone tell me what the heck I should expect? Or what they go through? Is it possible to have symptoms even on medication that keeps levels steady? I'm so confused and my doctor is no help and I have no clue what to believe when I google.

Thank you!!

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16 Replies

  • Posted

    Hello my name is Shelia and I was diagnosed in April 2016, that I had hypothroyidism, I was put on 125 mcg levothyroxine. Then I did another blood test and I had hyperthyroidism, then they dropped my levo to 100 mcg. My body aches all the time, it doesn't help that I have chronic pain, but its like it has intensified. Then there's the brain fog as some describe it, you forget things, I am always tired and some nights I can't sleep, this disease will drive a half sane person crazy or make you think you have truly went crazy. When you request your lab rest, ask for the whole work up for your thyroid.

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    • Posted

      Hi Sheila!

      I'm glad I'm not the only one who thought they were going crazy from this. I had no idea hypothyroidism could do all of this to a body. I always just thought it made you gain weight.

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  • Posted

    Well for sure get your T3 and T4 tested. If necessary get referred to an Endocrinologist for this. You should also get blood work done every 3 or 4 months.

    The truth is that medical science is far from a complete understanding of thyroid-related problems, and family doctors often don't have a clue. 

    Good luck!

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    • Posted

      Thanks Dave!

      Do you know what T3 and T4 tell? Does it make a difference medicine wise?

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    • Posted

      T3 and T4 can make a difference, as your body converts them, and if it's not doing that properly then it could require different medicine. A good place to find out more is Wikipedia.

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  • Posted

    Hi

    Google does not have an M.D, Google is not a medical doctor!

    I lost my thyroid to cancer 15 years ago. I am on Synthroid (not Levothyroxine) 125 mcg each morning and Cytomel 10 mcg each morning. About 20 minutes after I take these on an empty stomach I feel them kick in... .I could be sleep deprived for weeks, but once I swallow them, sleep is impossible for the next 12-15 hours.

    TSH is thyroid stimulating hormone. TSH is secreted by the pituitary gland. TSH tells the thyroid gland to make two hormones: triiodothyronine (T3) and thyroxine (T4).

    So, the pituitary gland sends TSH to the thyroid gland. If your thyroid gland is functioning normally, the thyroid gland responds to the TSH message by secreting both T3 and T4 hormones.

    But if the pituitary gland send TSH to the thyroid gland and the thyroid gland does not respond correctly, the pituitary gland will keep releasing TSH in an effort to get the thyroid gland to release both T3 and T4. Think of a ringing telephone calling, answer me, answer me...

    In this case the TSH number is high, the T3 and T4 numbers are low, and we say the patient is hypothyroidic.

    Because the thyroid gland releases two different hormones, the thyroid gland may release one hormone but not the other. I am told that most people do not take T3, cytomel, like I take.

    Test in two werks, chuckle chuckle

    kind regards

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    • Posted

      Thanks for taking your time to type out all of that information. I appreciate it! It's still a little confusing but I'm going to take what you said and do some more research.

      I meant that I googled to learn about hypothyroidism but kept getting different explanations from different sites. But I do believe that knowledge is power and we have to be advocates for our own health, especially in regards to chronic illness. But I digress.

      Thank you again!! smile

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  • Posted

    You are very welcome...ask away.

    What I gave you is straight physiology

    It helps to draw a diagram, make the pituitary gland the boss.

    The symptoms of being hypothyroidic are

    fatigue

    weight gain

    muscle weakness

    always feeling cold

    dry skin

    constipation

    hair loss..breakage

    depression

    reduced heart rate

    low blood pressure

    The symptoms worsen in direct proportion to how T3 and T4 deficient your body is.

    Study the list and just use your good sense...

    dry hair, reduced heart rate, lower blood pressure, constipation, feeling cold, muscle weakness, fatigue can all be related to hydration in one way or another.

    Understanding your body is based upon anatomy and physiology.

    The cardiac system is a closed system...the blood simply recirculates. If I poke ahole into the system blood will flow out. If blood flows out of the system, the blood pressure drops. If the blood pressure drops because of the loss of volumn, blood will stop returning to the heart. When the heart no longer receives returned blood, the heart suffers a heart attack.

    Yes, I have over simplified...I just wanted to give you a physiological example of a chain reaction.

    Hypothyroidism causes a chain reaction that results in symptoms.

    kind regards

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    • Posted

      Thank you much! That really did help. I'm going to ask for my T3 and T4 to be drawn so I can have a better understanding of my symptoms.

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  • Posted

    Hi there. Thyroid issues can result from auto immune disease and symptoms you describe sound ai to me. I am a sufferer so know what it os like. You should ask for blood work to look at esr crp and ana. Not commonly done. Better still ask for a referral to a rheumatologist and discuss your symptoms with him or her.
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    • Posted

      Thank you, Margaret. I also think autoimmune but all of my bloodwork has came back okay even the ANA and other autoimmune tests. Only thing that is a little high is the ESR. It's at 32 on a scale of 0-20 for my age (I'm 29). 

      I see a rheumatologist in January so I'm hoping he'll be able to help me even though my bloodwork doesn't show anything.

      I did not know that autoimmune could affect the thyroid, tho! Thank you for telling me! 

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    • Posted

      hi, so glad you are seeing a rheum in the near future. That is all that ever shows up on my bloodwork too.Raised esr and crp. I was diagnosed after a year of following blood tests, logging symptoms, ruling out everything in the world and trying a long course of antibiotic treatment. I had suffered a long time from symptoms.

      During the time I was seeing an immunologist going through this process I had an episode of uveitis. My first and last. But it is a pretty majore symptom for them and helped them diagnose me. It is a complicated business but you are doing all you can to help yourself to get there. 

      If you do get a proper diagnosis and get treatment it is so worth all of the beating your head against the brick wall. I am currently almost symptom free and have been for 3 years. I hope you have a good rheumatologist who can help you. 

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    • Posted

      What autoimmune disease do you have? If you don't mind me asking. I'm in the US and the rheumatologist I searched has good reviews so I hoping he will be knowledgeable. I've spent so much time going to doctors who, bless their hearts, have tried to no avail. 

      Ive only been to neurologists thus far as I thought it was a neurological issue but they all say that it's not - to which I'm grateful. I also have a lot of muscle/joint pain and chronic fatigue so that's why I thought autoimmune. I've never tried any medicine yet, though, as no one would give me anything so I'm looking forward to maybe trying medicine that will help.

      I, too, have a lot of vision problems. My left eye has vision loss to where I can no longer wear my contacts as its not strong enough but my eye doctor says my eyes are still the same prescription. I have weeks where my eyes are blurry and can no longer drive at night because I cannot see the signs clearly. I see large dark spots in my vision and now have ocular migraines (never had a migraine in my life). 

      Yes, that's exactly what it's like is beating your head on a brick wall! Lol it's so defeating at times.

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    • Posted

      Have a look at Lupus. Not saying it is but look at migraine ibs symptoms connected with Lupus. Might make sense to you. Look at Lupus effect on central nervous system. .my eyes also so blurry and no cause to be found x

      Personally I have Behcet's which has all same symptoms with the joyful addition of ulceration. They are both forms of vasculitis which is auto immune/auto inflammatory disorder. You have the Vasculitis Foundation in the US there. Good source of information advice and support even before diagnosis.

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    • Posted

      Thank u so much for all ur info and taking the time to talk to me!

      I'll come back and let you know what the rheumatologist says.

      I'll definitely look into everything.

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