My journey since diagnosis is progressing reasonably well. Although biopsy of nodules was negative it is being repeated next month in conjunction with nasal endoscopy which I assume is routine.
In the meantime I have had two dose increases since starting on T4 25mcg on 23/12/22; 50mcg on 10/2 and 75mcg on 31/3. The tests below were both done following the recommended protocol.
23/5 NHS TSH and FT4 results awaited.
24/5 MMH test to include FT3. Results are
TSH 0.48 (0.27 - 4.2)
FT4 18.00 (12 - 22) 60% through range
FT3 4 (3.1 - 6.8) 24.32% through range
The conversion ratio is 4.5 : 1 which appears to suggest that conversion is not optimal.
On a subjective level I cannot really detect much improvement although there have been odd days when I have felt better/more energetic with less brain fog but that could just be when the sun is shining! I would add that despite being mindful of my diet my weight has been creeping up - about 5lbs since I started T4.
I have been taking the recommended supplements in order to reach optimum levels but have not yet re tested for these.
I have a GP appointment next week and would appreciate some advice on what line to take. Should I push for a further T4 increase to 100mcg and/or referral to endo for T3 trial? I suspect GP view will be this is as good as it gets! If T3 is worth pursuing I am happy to do this privately.
Many thanks.
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Italiangirl123
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As you don’t appear to have had any replies, I’ll give you my opinion for what it’s worth. You have room for an increase to 100 mcg but whether your GP will play ball is another question. Of course, you don’t know what your NHS results will be and my NHS results, taken from the same blood draw differed quite a lot from the Medichecks. My NHS has always shown a lower TSH and higher FT4 (with the same reference range). Call me cynical but I think they’re rigged that way in favour of the Hospital and I’m not talking one or two points difference 😱
Thanks Gingernut. Am intrigued by what you say and will await NHS result with interest! Especially as I understand that MMH uses an NHS lab. There was 24 hours between the two tests but otherwise conditions identical.
We generally feel at our best when the T4 is up in the top quadrant of its range as this should in theory convert to a good level of T3 in, around, the mid 5's.
So with your T4 at just 60% suggest you first try for a dose increase in T4 - Levothyroxine as this might, just be enough to bring your T3 up and your conversion ratio down to under 4.
Everywhere I read suggested ferritin needed to be at least over 70 for any thyroid hormone replacement to work well :
I now aim for a ferritin of 100 : folate around 20 : active B12 75 ++ ( serum B12 500 ++ ) and vitamin D at around 100.
Onwards and upwards - optimal vitamins and minerals and one more increase in T4 might work and needs to be trailed as any other treatment option is likely at your expense and less straight forward.
P.S. Just read your profile page - I too was under Moorfields for several years as I had emergency laser treatment in both eyes for holes and tears in my eyes - diagnosis - iritis .
When I questioned why and what could I do to prevent it happening again I was told they didn't know and maybe there was inflammation somewhere - I was living with several symptoms of hypothyroidism then, as I had done all my life, but never received a diagnosis and just offered anti depressants, and NSAID for my back pain and sciatica.
I just wish then, in my 30's, my thyroid antibodies had ben run -
20 odd years later diagnosed Graves and am now post RAI thyroid ablation 2005 - which I deeply regret.
Thanks for your response. I shall keep my fingers crossed for a dose increase in T4.
When I had the full thyroid panel done on 23 November last year my ferritin was 149ug/L (30 to 650) so there doesn't seem to be a problem there. I will do a full panel again in a couple of months assuming I do get the dose increase next week.
Although I had TED in 2009 it wasn't that which sent me to Moorfields. It was actually epiretinal membranes that were threatening to come away. Thankfully they appear to have stabilised although I am still under their care for glaucoma monitoring.
I have had many niggling health issues over the years which with hindsight (as you say a wonderful thing) and knowing what I know now I've no doubt were being caused by my struggling thyroid rather than advancing years as suggested by my GP. Or perhaps it is the advancing years that cause the tyroid to struggle!
Whilst I regret not being more proactive earlier or having a more enlightened GP I feel relatively fortunate when I hear how much misery others have had to endure. It is clearly a scandal on which a bright light needs to be shone.
Your T4 to T3 conversion is poor evidenced by high FT4 with low FT3
Before adding T3 you need to increase levo...at 60% through ref range you have capacity do this. Suggest you increase to 100mcg levo maintain that dose for at least 6 weeks then re test. You may need to repeat this to raise FT3 to an appropriate level which relieves symptoms
it is vital to optimise to optimise essential nutrients vit D, vit B12, folate and ferritin all of which support thyroid function/ conversion.
FT3 is the active thyroid hormone esential to almost every cell in the body, it must be available in an adequate and constant supply.
Low cellular T3 = poor health
At 24.32% through ref range your T3 is far too low
As a rough guide we aim to have both Frees sitting around 75%.
So yes, ask your GP to increase your levo. He is very likely dosing by TSH which is wrong....TSH is not a reliable marker. The most important labs are FT3 followed by FT3.
Hi DippyDame. Many thanks for your advice. I have no doubt I will have an uphill battle convincing my GP to increase the T4 but I will make good use of the references you have provided - thanks.
I did a full thyroid panel on 23 November. My ferritin, at 149, as already mentioned appears to be OK but I have been supplementing other nutrients as suggested since then and will re test in a couple of months.
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Conversion improved massively - adding more T4 and removing some T3
