I would like to say a heartfelt thank you to everyone here who gives advice and support, particularly the incredibly well informed admins and would like to detail my good news/ hopeful story. Sorry for the long post in advance!
I have been hypothyroid for 27 years and have never felt well. I saw an endocrinologist in about 2000 who did a short synacthen test and told me I was fine on levothyroxine and have had “in range” TSH more or less since. However, I have always felt hypothyroid with pretty much all the symptoms described, weight gain and increasingly bad lipids.
In October last year I felt really ill, palpitations, severe heartburn, headaches, dizziness, faintness. I had some bloods done by my GP which showed a very high cholesterol and triglycerides. He referred me to cardiology. It was this that brought me to this site and I quickly recognised that the palpitations were due to a sensitivity to a particular brand of levo as described by others. I also realised that I did not have to put up with the way I felt or my high lipids and decided to investigate further.
A medichecks blood test showed poor conversion of T4 to T3 and a genetic test confirmed that I am heterozygous for the abnormal DI02 gene.
I went to see a wonderful private endo ( yes, they do exist!) who immediately started me on liothyronine 10mcg in the morning while reducing my levo from 137.5 to 125 for 6 weeks. He said “you tick every box” and “ why did you put up with this for so long?”
The results are unequivocal. Total cholesterol down from 6.8 to 5.3, triglycerides from 7.4 to 2.7, weight down 5lb ( on a low carb diet) and I have nails again.
Oh, and I feel better too..... less muscle pain, less brain fog, more energy etc.
So, a very big thank you to everyone and a message to those of you who feel unwell. Don’t put up with it, find a consultant who listens and looks at the whole picture, not just TSH and move on swiftly if they are no good. TUK have a list of good people.
I am not suggesting that T3 is the answer for everyone ( it’s not!), but please don’t despair, there are good people out there and you deserve to be listened to and treated properly.
As a foot note..... he apologised for reducing my levo as my TSH has slightly increased!
I would be very grateful for any advice or comments about bloods or treatment.
Written by
Mollyfan
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Recommend you get full thyroid and vitamins tested
As you have Hashimoto’s frequently we have low vitamin levels
What vitamin supplements are you currently taking
Which brand of levothyroxine are you now taking
(Was it Teva upset you previously)
Do you not normally split T3 into 2 x 5mcg roughly 12 hours apart?
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common with Hashimoto’s
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Hi. I will put results in with ranges as I have failed completely to upload more than one photo!
All bloods were taken in the morning before any medication or food. The first cholesterol was NHS but all others are medichecks. So, 24 hours after levo ( and also lio as I was only taking one 10mcg in the morning, so second T3 result may be a bit low)
Vitamin tested in October
Vit D 92.5 (50-175)
Vit B12 118 (>37.5)
Ferritin 353 (13-150) Iron studies by GP normal.
Folate not done but have one abnormal MTHFR gene and was 3.93 (3.89-26.8) in 2018.
I will repeat these with next blood test
Currently taking Vit D 5000IU/ day and folate as you advised.
Oct 2020
TSH. 1.51 (0.27-4.2)
T3 4.2. (3.1-6.8)
T4 17.4 (12-22)
Feb 2021 same reference ranges
TSH 2.10
T3. 4.19
T4. 13
He has advised increase in lio to 10mcg bd, but I may well split 10 5 5
Folate not done but have one abnormal MTHFR gene and was 3.93 (3.89-26.8) in 2018.
Are you currently taking just folate or a daily good quality vitamin B complex ?
Obviously important to stop taking any supplements that contain biotin (eg vitamin B complex) a week before ALL blood tests as biotin can falsely affect test results
Personally I then take separate folate and B12 during that week before test
My B12 has always been high rather than low, so I only take folate. I didn’t do the vitamins on the last test, but will do a full screen next time. Thanks for all your help and enormous knowledge!
My T4 was previously 17 and TSH much lower. It is really interesting as I stopped all Teva and changed to Mercury. I only reduced my dose from 137.5 to 125 but the fT4 has significantly reduced. I wonder whether this shows that Teva is “stronger” than Mercury? I will definitely split the dose and look to increase the T4 again after the next test.
No it shows it’s important to fine tune dose levothyroxine
It’s also extremely common for Ft4 to drop with addition of T3.
Perhaps....Our metabolism improves and we start using more
Endocrinologist nearly always reduce levothyroxine when adding T3, but extremely common to then need to increase levothyroxine slowly back up to previous level or higher
I’m glad you getting the care you deserve. I would love to have the details of your private endo as I’m having a mare. Private message me if you don’t mind. Thank you
Nice to hear a success story for once! You've spurred me on to find someone private too-it will be money well spent as trying to work everything out myself is just not working. I hope your good health continues x
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CT3M works thank you Paul Robinson
Thank you - hopefully on the right road to recovery
Thank you Clutter and shaws
Thank you to everyone's advice and help, a great forum!!
Thank you for good advice and much support 
