1. Community
  2. Diabetes and hormone problems
  3. Hypothyroidism

Diagnosed with hypothyroidism(sort of)

Posted , 5 users are following.

jeff06842
jeff06842

Also diagnosed with chronic fatigue syndrome last week.    I don’t believe I have both.   I know I have one.  Which one?   

I’ve always had hypothyroid numbers but wasn’t aware of symptoms so I never cared or even knew.  Drs never said anything either probably because i didn’t complain about symptoms.   TSH wasn’t that high is my guess why also.

A year and a half ago I got totally wiped out within 2 months with severe fatigue, weakness, muscle and joint pain, insomnia,  brain fog,  sexual dysfunction, weird dreams and on and on.   Nothing has changed.  

Diagnosed with chronic fatigue syndrome because we couldn’t find a reason for being so sick.   

I’ve been suggesting looking at my thyroid numbers and symptoms.     Finally they are listening and we’re goona start with low dose(50mcg) levothyroxine to start.     

Can this happen with sudden very noticeable symptoms.?    I’d much rather have hypothyroid than chronic fatigue syndrome because there are proven treatments.   I just don’t know how quick and how sick hypothyroidism can attack. 

Thanks 

0 likes, 17 replies

17 Replies

Next
  • margaret22116
    margaret22116 jeff06842

    Posted

    Not sure of the answer to your question but all of your symptoms including thyroid dysfunction are suggestive of an underlying auto immune disorder. I would want to look at that further.
    • jeff06842
      jeff06842 margaret22116

      Posted

      I’ve had thorough endocrine and neurological test and MRIs done.    Never found anything.   Were thinking possible MS or Cushings.    Negative.  

      I can’t think of any autoimmune diseases it could be.     Don’t have antibodies to suggest Hashimotos.    Not Lupus.     Can you give me some ideas? 

      Thanks. 

    • margaret22116
      margaret22116 jeff06842

      Posted

      Well the problem sometimes with ai issues in luding Lupus that antibodies often din't show up in blood tests. I have Behcet's which is similar to Lupus and Sjogren's but with added extras. That rarely shows in blood tests. No definitive test at present. Quite often diagnosed on disease history. Sometimes I have minor blips in esr and crp. Sometimes normal test results. Very difficult area. But all the symptoms were there do diagnosis was made. Blood tests fluctuate all the time and mri scans show nothing.

      Luckily I sed a great specialist. I had all of your symptoms barring thyroid and a crazy migraine syndrome finally diagnosed as inflammation in the brain stem. After a long treatment zi sm in a kind of remission. Only problem I had was awful pain in my feet. Hydroxychloroquine got rid of that.

      What kind of dictor are you seeing? Are you in the uk?

    • margaret22116
      margaret22116 jeff06842

      Posted

      I should add, I don't know enough about thyroid issues to know if it can cause this. My sister has thyroid problems and was getting progressively worse despite treatment. She was, after much suffering, diagnosed with Sicca syndrome and the doc she saw was questioning Sjogren's. Quite often ai disorders go hand in hand with others. You need a good doc to rule things in or out with a very open mind.

  • jennifer16462
    jennifer16462 jeff06842

    Posted

    Yes it can happen suddenly. But it hasn’t  . You said your symptoms started a year and a half ago. My bet is is that you started having thyroid trouble all that time ago and now because you haven’t been treated, it’s become worse. 

    Have you got your thyroid test results to share? You could have been just slightly out of range a year ago . And doctors won’t usually treat sub clinical borderline hypothyroidism until your tsh goes over 10.0. Mine was 11.0 and they wouldn’t treat. Even though I felt like something was sucking the life out of me.  But I had another test 6 weeks later and my tsh had jumped to 20.0 and they finally treated me with levo. After what I’ve been through with my thyroid, I’d rather have chronic fatigue. My friend suffered from that and eventually after making lifestyle changes, she beat it

    • jeff06842
      jeff06842

      Posted

      Oops 

      T4 is .6 on .7-1.9

      T3 is 3.2  on 2.8-5.3

      TSH is 2.5 on .7-4.7

      My chronic fatigue syndrome has crippled me.   My life has ended.     

      I don’t think hypothyroid can get this bad but I don’t know.    I have one or the other.  Maybe both.    Either way I don’t want to keep doing this everyday.  

      How are you now?   What s your dose of levothyroxine?    Unreal you had to wait to get to 20. 

      TSH is ridiculous for diagnosis.    What were your t3 and T4?   

      How bad did you feel? 

  • dana18818
    dana18818 jeff06842

    Posted

    Hypothyroidism causes chronic fatigue in the majority of cases, and my guess is that if your hypothyroidism was properly treated (along with some adrenal support) your chronic fatigue will be gone.
  • dana18818
    dana18818 jeff06842

    Posted

    I went through a similar experience when my endo lowered my thyroid medication (4 times according to my inappropriately suppressed TSH and I don't have a thyroid) which made me severely hypothyroid within weeks.  I went from super healthy doing high-intensity intervals to not being able to stay awake at work, get out of bed, or even walk straight.  I was so weak... basically lost my life in a few months and it took 2 years with the right doctor to restore the damage done by the thyroid dose changes.

    • mar75090
      mar75090 dana18818

      Posted

      Dana my TSH has been suppressed for 20yrs with FT3 of 3.0. Reverse T3 14.7 (within optimal range). And FT4 of 160 which is normal high end. I still have my thyroid and the TPO Tg ab have dropped to normal from 1000s. But everytime I see a new or diff doc the suppressed TSH wants them to lower my dose but Im down to 150mcg and dont plan on lowering. I was lowered in the past and it was a disaster. At least I know my odds for thyroid CA are lower. What is your TSH now?
    • dana18818
      dana18818 mar75090

      Posted

      https://www.thyroidcode.org/thyroid-tests-part-1/

      "TSH Example and Lessons Learned"

      "A great example of the TSH problem was my last visit to the endocrinologist.  My lab results were TSH < 0.015 uIU/mL (0.34-5.60 uIU/mL normal reference range; extremely low/suppressed), free T4 = 1.38 ng/dL (0.60-1.20 ng/dL normal range; just over the normal range), and free T3 = 2.7 pg/mL (2.0-4.4 pg/mL reference range; low normal).  During this visit, I mentioned that I felt much better and that my hypothyroid symptoms of fatigue, coldness, memory and concentration issues and weakness were all much better.  In fact, I reported that all my symptoms were completely gone except for some occasional fatigue."

      It was very suppressed but I felt great...too bad when your doctor is more interested in a normal TSH level than reducing symptoms and making you feel better...

    • mar75090
      mar75090 dana18818

      Posted

      Hi Dana. Thanks for the thyroid code. Biotin also suppresses TSH and the antibodies of many tests. The labs know this and should really remind the ordering doctors. I was the one who told my doctors. Only found out about this recently and I always take BComplex bc it's water soluble. Think it's about time the labs look for a Biotin replacement. A man in an ER died of a heart attack bc his tropinin.level was normal.bc of Biotin...he died in ER bc they thought they ruled out heart attack.

  • mar75090
    mar75090 jeff06842

    Posted

    Hi Jeff. Maybe low dose T3 to jumpstart/reboot your mitrochondria would do it. Guess you know not to take any vits w Biotin within 24hrs before blood draw, or your TSH would be falsely lowered and thyroid hormones falsely increased. Not to mention 100s of other tests for antibodies etc bc labs use Biotin in lots of testing. Have you been tested for Lyme and other tick flea mosquito borne illnesses? As thyroid disease worsens chronic fatigue definately becomes a symptom and no easy to remedy. Long way to Tipperary.
  • mar75090
    mar75090 jeff06842

    Posted

    Ps Have you been exposed to mold? Just thinking outside of the box. You have Serum folate and Vit B12 the MMA test? Avoid folic acid in vitamins. A homocysteine test would be ideal if you hvnt had one yet.
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.