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Does anyone have low tsh with a diagnosis of post surgical hypothyroid?

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wendy94915
wendy94915

I had the left side of the thyroid removed in 2010 due to many large tumors, over 4cm, they were benign. Have had nodules in the right side for 3 years. TSH has been consistently low or low normal (0.01 to .396) I am taking 50ug of levo 6 days per week. I feel horrible, extremely tired, no energy. I'm not understanding why the TSH is low, but hypothyroid is the diagnosis. My endo, even though I have told her I feel terrible on this dose of med, shrugs and says "lab work is normal" and turns away. I'm disgusted at this point. PCP ordered a TSH wiith reflex to free  t4, it was low 0.186 (0.36-3.74 ulU/ml), but the ft4 was in normal range. I have made an appointment with a thyroid specialist for 4/30/15. I would greatly appreciate any info or suggestions anyone can give. I don't think anyone ever tested antibodies, should that be done? Many questions, no answers. Thanks!

0 likes, 4 replies

4 Replies

  • Scazzoh
    Scazzoh wendy94915

    Posted

    Hi Wendy there is a small piece of research to show that having a low tsh does not increase the risk of osteoporosis or heart disease. This is what doctors worry about, even though we could be feeling dreadful. Low is 0.04 to .4 You can find the research on Pub Med, look up the risks of osteoporosis with a low TSH. Let your doctor have a copy of this paper.  If your doctor thinks you might be at risk of osteoporosis, ask for  a bone density test. It has taken me two years to persuade  doctors to increase levo from 75 to 100. Am feeling better but still suffering symptoms. Next stage is getting them to look at prescribing me t3. I've got my boxing gloves ready.  
  • wendy94915
    wendy94915

    Posted

    Thanks, Scazzoh. My pcp ordered a cardiac stress test for heart, and it was OK, except that I needed help staying on the treadmill because of exhaustion. The endo ordered a bone density and it showed osteopenia in 1 lumbar spine vertebrae out of 4, that's OK, as I'm 61. I'm on 50ug of levo, but only for 6 days per week. The endo doesn't take symptoms into consideration for med doses, so that's why I'm going to go to a different doctor. I'm just wondering why the TSH is low (.1 to .396) when I'm definitely hypo. My basal body temp has been as low as 95.4 degrees F. That's way too low. On average it's 96.5 F. I had brain cancer 4 years ago with gamma knife radiation. Wondering if they zapped the pituitary/hypothalamus with the gamma knife. I'm in the USA. Hopefully will be able to get some answers soon. Thanks for your reply and info!
  • Scazzoh
    Scazzoh wendy94915

    Posted

    Hi Wendy, your TSH is only 'low' according to ranges set by lab technicians. The only true reading for you would be to compare your TSH now with what it was before you became ill. My basal temperature is very low too,but doctors tend to ignore this symptom, referring to it as a 'non-specific' i.e. not directly linked to UAT. In fact, there are very few conditions which have a low basal temperature as a symptom - alcoholism, hypothermia and, of course, UAT. Doctors would prefer to deal with as few symptoms as possible so they can prescribe one drug only, hence the 'blood tests normal no further treatment' mantra. 
    • wendy94915
      wendy94915 Scazzoh

      Posted

      Just got the ultrasound report. there are 4 nodules in the right lobe, and 1 on the isthmus, also a left lobe mass (left lobe and isthmus were supposed to have been removed in 2010) the mass is 4.9 x 2.6 x 3.6 cm extending into the substernal region. The endo said everything was hunky dorey...and no need to see her again for a year...wrong...I have an appt. for a second opinion, unfortunately it isn't for another month.
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