Well after my first post , 25 years on levothyroxine and it no longer seems to be working for me, encouraged by all I was reading on this forum I decided to try and find out more. Firstly I have realised how stupid I have been when ringing up the doctors for my thyroid blood test results for over 25 years and being told they were normal and no further action required. I never asked what the actual results were or requested a printed copy, I assumed they were the experts and therefore must know their job.
In 2014 my levo dose was dropped from 125mcg to 75mcg as I was told I was being over medicated. Since then I have felt incredibly unwell which has resulted in many problems and hospital referrals including breast pain diagnosis, costochondritis (which I understand to be inflammation in the rib cage), angina bullosa haemorrhagica (extremely painful blood blisters on the mouth and tongue), numbness, pins and needles in hands and feet, excruciating cramps in feet and legs , extreme cold ,joint and muscle pain ,severe vertigo. My memory became poor prompting my doc to do a test they use for dementia. He told me that my test was fine. I then ticked off my list of symptoms on the Thyroid UK page and took it to my new doc as we had recently moved home.
She ordered a series of blood tests and told me they were all normal except for my cholesterol which had come back high for the first time ever. She arranged for me to have physio for my muscular and joint pain and reluctantly agreed to refer me to an endo. I had never seen an endo before and was optimistic that at last everything would be sorted out. (yes really, how stupid am I !)
So my appointment came and the endo referred to the list of symptoms I had shown my doc , she picked two of the symptoms off the list , carpel tunnel syndrome and irritable bowel syndrome and along with hypothyroidism wrote this as her diagnosis in the letter to my doc.! She stated my bloods were normal and to stick with the 75mcg of levo. I repeated how ill was feeling so then questioned that maybe the thyroxine was no longer working for me. She told me that there was no evidence whatsoever that T3 worked for anyone and that she had never heard of NDT. She said that I should probably see a rheumatologist and that I probably had CFS. I disagreed stating that I believe that all my symptoms are due to the fact my underactive thyroid is not being treated adequately. She then said I should have a short synacthen test done while I was there. It was done at 4pm however she said that was ok as she had the results from a 24 hour urine collection test so that would complete the picture. The test result was sent to my GP as adequate.
On my last endo visit , still feeling very unwell she reluctantly put my levo up to 100mcg 'with the aim of getting and stabilising my TSH down to 2.5 in hopes that I may feel a little better'
Prompted by the info I was reading on this site I requested my blood test results from the last several years. So here goes, I hope someone out there has stuck with me this far!!
Aug 2010 TSH 0.38 (0.3-5.5}
June 2011 TSH 0.1 (0.3-5.5) FT4 16.9 (10-19.8) FT3 4.7 (3.5-6.7) notes say TSH below range FT4 suggests patient euthyroid TSH maybe suppressed in subjects taking T4
July 2012 TSH 0.1 (0.3-5.5) FT4 18.1 (10-19.8) FT3 5.1 (3.5-6.7) notes TSH below range
Sept 2012 TSH 0.1 (0.3-5.5) FT418.4 (10-19.8) FT3 5.3 (3.5-6.7) notes THS below range
April 2013 TSH 0.1 (0.3-5.5) FT4 12.7 (10-19.8) FT3 4.0 (3.5-6.7) notes TSH below range probably euthyroid results.
June 2013 TSH 0.1 (0.3-5.5) FT4 17.1 (10-19.8) FT3 5.3 (3.5-6.7) notes TSH below range, abnormal, patient needs a telephone consultation.
Oct 2013 TSH 0.1 (0.3-5.5) FT4 16.1 (10-19.8) FT3 5.0 (3.5-6.7) notes TSH below range.
Aug 2014 TSH 0.1 (0.3-5.5) FT4 17.3 (10-19.8) FT317.3 (10-19.8) notes TSH below range.
Nov 2014 TSH 1.2
June 2016 TSH 3.7
May 2017 TSH 3.7 (0.4-4.5) FT4 12.6 (10-24) FT3 3.9 (4-8.3)
Aug 2017 TSH 2.7 (0.4-4.5) FT4 12.6 (10-24) FT3 3.9 (4-8.3)
So as my TSH appears to have from 2011 to have been suppressed as far as I understand that's ok providing the Ft4 and FT3 are in range? During that period and indeed since I started on the levo I have felt ok but not as well as I think I could have been and from what I have learnt on here that I believe could be due to a vitamin deficiency.
What I don't understand is that when my endo put my dose up to 100mcg several weeks ago is that around 5 weeks in I felt so much better for around a week , all aches and pains improved , cramps were better as was my vision ( my optician had recently sent me to the emergency eye hospital with blurred and double vision) and best of all I was able to get a proper nights sleep. Anxiety , mind racing all diminished. Now however I feel I am back to square one and I know I am still under medicated, though I believe my endo has achieved the TSH result she is looking for and will probably discharge me when I am due to go back this Thursday. What I don't understand are the latest two results show that only the TSH is different 3.7 down to 2.7 while FT4 remained at 12.6 and FT3 at 3.9 . I don't understand this . Will the correct dose of levo still work for me and how did I feel so much better for a few days when FT4 and FT3 remained the same?
I really think I wont get anywhere with this endo and am not sure whether to attend this Thursday. I feel truly awful again and am thinking maybe to just increase the levo 125mcg myself?
The only vitamin results I have had done are Sept 2014 Vit D 50nmol/L (24-167)
March 2017 Vit D 62nmol/L
July 2012 B12 346ng/L (190-800)
Sept 2014 B12 462 (190-800)
July 2012 ferritin 197ug/L ( 12-300)
Sept 2014 ferritin 228 (12-300)
July 2012 Folate 7.0 (3.9-14)
July 2014 Folate 10.6 (3.0-17)
Many thanks to anyone who's stuck with me this far, I would be grateful for any advice offered and for those of you who may have nodded off, many apologies or maybe I helped you out!