Advice before GP visit please

Hi all,

I'm 46 and had a thyroidectomy 6 months ago, no hyper or hypothyroidism had been diagnosed as my blood tests always came back within range but my gland had grown to 10 times the size of a normal one. Following surgery I was put on 150, then 125 then 100 mcg of levothyroxine. All this time I've been feeling strong anxiety, heart pounding, startled at the slightest thing. Latest results on 100 mcg were TSH 0.7 (0.35 – 5.5), 15.8 (10 – 19.8) so my GP was hesitant to lower the dose. I'm going to see her again this week and would like some advice on which direction to take as I'm at the end of my tether. Thank you

8 Replies

  • Adrenals.... Get them checked with a saliva test from somewhere like blue horizon, for about £70... Rather sounds like they could have had a hard time propping you up.

    Plenty of vit b and vitamin c will help support them. If you have had an operation with a naesthic, its always a good idea to check your B12 too....

    The doctor is correct not to drop your thyroid meds.....

    Xx. G

  • Ask for the T3 to be checked. That's the true guide. Check it yourself if she won't. Were your antibodies ever checked?

  • Welcome to our forum and am sorry you're feeling awful most probably due to your hormones going out of whack.

    I am hypothyroid but your symptoms are not uncommon initially when on levothyroxine.

    I'd ask your doctor to take a Free T4 and Free T3 blood test and I'll give a link with info.

    Always get your fasting, blood test at the very earliest possible and leave about 24 hours between your last dose of levo and the test and take it afterwards. This allows your TSH to be at its highest and food can interfere with the uptake.

    Most doctors treat us according to the whereabouts of the TSH and not our symptoms (they don't know them anyway). Also levo should be taken first thing with one full glass of water and wait about an hour before eating. Food interferes with the uptake of hormones. Also ask for Vit B12, Vit D, iron, ferritin and folate to be tested as we can be deficient.

    As I said, I'm hypo but now take T3 instead of levo. I sincerely believe that someone whose had a thyroidectomy should have T3 added to T4. I found T3 very calming and your GP may be reducing your dose to keep your TSH 'in range'. TSH is from the pituitary gland so doesn't always state how the patient 'feels'.

  • Thank you so much for your replies, it really helps to hear from knowledgeable and sympathetic people :). My iron levels were checked and although a bit low at first (but whithin range) they have now gone up thanks to supplement and better diet I believe. I did a blood test for cortisol a few days ago and will discuss the results with my GP at my next visit. Will definitely mention T3 and other tests to her, I don't really have any other bad symptoms apart from the almost constant anxiety. I take levo first thing in the morning and wait at least half an hour before eating. Oh and I've been taking 5 HTP for 3 weeks with no obvious effect. Thanks again for your comments.

  • Waiting a full hour would be much, much better. :)

  • Pooky70,

    If your GP can't test FT3 it is worth you ordering a private test from Blue Horizon or Genova to check it yourself. After my thyroidectomy I was prescribed T3 and was recovering until I was switched to Levothyroxine which made me very unwell. On 100mcg Levothyroxine my FT3 was below range. I self medicated adding T3 for 6 months and endo agreed my health was much improved and prescribed T4+T3. I have been well on T4+T3 combination for 2.5 years.

  • Thank you Clutter. May I ask how you self-medicated with T3 in case I decide to try it?

  • if you had a total thyroidectomy your gland cannot have brown back

    something is clearly very wrong and you need to ho back to the surgeon pdq

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