I need hypothyroidism advice

Posted , 3 users are following.

I have recently been diagnosed with hypo. I was put on levothyroxin. Some of the symptoms went away and my tsh levels are normal. That being said i am having excessive hair loss and even experienced awful chest pain during my period. Like a burning squeezing pain for two days. To top it off i still have strange remaining symptoms like pins and needles in my face and entire body, my skin hurts and body aches like a fever. My question is has anyone experienced these things? Could it be more than hypo? I was tested for autoimmune and it came back negative. Has anyone else experienced the pins and needles or ache fever feeling?

0 likes, 13 replies

13 Replies

  • Posted

    How old are you??
    • Posted

      Okay, just checking! I have hypothyroidism and I'm in perimenopause so sometimes it's very hard to tell which symptoms go with which condition! But, yes I have had the exact same things you are talking about. How long have you been on levothyroxine?

    • Posted

      About 3 months. It immediately fixed my tsh levels and took away some symptoms but i swear either something else is going on or maybe its still my thyroid so i was curious if anyone else has experienced these remaining symptoms
    • Posted

      from what I have read and been told it can take up to 6 months or more for the levothyroxine to get in your system and help all of your symptoms
    • Posted

      That is encouraging do you see an endocrinologist or gp?
    • Posted

      Me too. I'm contemplating finding an endocrinologist. I had to go through 5 doctors and one whole year before they even believed me enough to check my thyroid. Did you have an ultra sound or any sort of physical exam of your thyroid or just blood work?

    • Posted

      Good grief...5 doctors???? I only had blood work done. My doctor is great I went in the office and was explaining all of my symptoms to her and she was the one that wanted to test my thyroid. I had no clue even what hypothyroidism was lol
    • Posted

      Yes it was and still is frustrating. It is a fight that's why I am seeking advice and support. I'm not sure if some of the symptoms might be more than thyroid.

    • Posted

      Casey, what you’re experiencing is all very typical. And in fact a large portion of the hypothyroid posts on this site deal with getting diagnosed, dosing and side effects of meds. 

      Yes, do find a good endo. Be prepared, the really good ones are rare. The best endo I had could extrapolate in his head what sort of dosing changed I needed based on my existing dose and my blood work. Unfortunately I moved and have never found another endo that is as good. My pint is, you may have to shop around and try some out before you get a good one. The two docs I found who were best with the thyroudcstuff were both doctors who initially trained in Eastern block countries: Russuia and Romania.  The docs who were young and trained in the US were unfamiliar with most of the nuances of thyroid disease. I tried a handful each of Endos  and GPs. Not a huge amount, but enough that I would look for one trained in Russia or Romania in the future.

  • Posted

    Hi Casey,

    Yes, I experienced those side effects. Because I was having so much pain, they did a scan and found liver lesions shortly after I started this medication. I didn’t know at the time, but have since run across clinical cases indicating that this is a side effect if the medication. I also immediately had severe adema- water retention so bad, it looked like heart failure. I also experienced the weird burning feeling. 

    However, is it possible what you’re experiencing could be heartburn? Heartburn is a symptom of hypothyroid disease and can also be triggered by the medication. I guess that sounds weird, but some heartburn can be very severe. Just something to think about.

    Many people experience flu like symptoms and hair loss- very typical. For some people these symptoms go away over time. They did not go away for me. My hair actually started growing back when I went off the medication.

    If you’re being treated for hypothyroid disease, you’re more than likely afflicted with autoimmune disease, as both Hashimoto’s and Grave’s (the diagnoses for most hypothyroid disease) are autoimmune diseases. On the list of side effects for this medication, you will see fibromialgya and arthritis, both autoimmune disease. I can assure you, these do not go away once you settle in to the medication. 

    There are literally thousands of posts on this site by people having side effects from levothyroxin. For me, the side effects were so bad, I went off it.

    Please do yourself a favor and, 1) read the insert that comes with your medication, or do an online search for the manufacturer or reliable site that lists the side effects of levothyroxin. 2) Search here for posts on side effects of levothyroxin. You’ll get an “earful” as they say. There are thousands of posts from people with horrible side effects. 

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