Can I have some help with results please?

[Piglet1956]

So I have my blood results after 6 weeks on 10mcg T3 trial (5 mcg x 2 daily) as well as 75mcg of Levo and I know my endo  (NHS) will phone this week and I want to be well prepared.  

10/8/22 

TSH 0.06 (0.35-5)

T4 12.2 (9-21) 27% through range

T3 4.8 (3-6) 60% through range 

Previous results, pre T3, are shown in the photo attached. Green highlights show private test results and the others are NHS tests.

I am feeling the best I’ve felt in a long time - more energy, much more sleep and less brain fog (though this could still improve).  I still have other symptoms but probably liveable with for the moment. My concern is the suppressed TSH and low T4.  The endo said he wanted to see my TSH around 2 (help!) so isn’t going to be happy with these figures. 

Any suggestions as to how things might be adjusted? Or suggestions for best way to deal with the suppressed TSH and low T4 when the endo phones?

Thank you for all your help and support.

[Lalatoot]

Piglet your TSH is never going to be 2 on combo. On levo alone the recommendation is TSH nearer to 1 and when you take liothyronine it usually lowers TSH.For me ft4 would be too low and I would be looking for 25mcg increase in dose.

It took me 2 years of methodical and gradual dose changes until I found levels and doses I wanted to stay on longer term.

[Piglet1956 in reply to Lalatoot]

Thank you Lalatoot. I know the TSH of 2 is unrealistic and if endo not aware this is rather concerning. If I push for increase in T4 have you any idea what that would do to T3 - I know its very individual but just wondered if there is a rule of thumb here that might be a predictor of outcome.

[Lalatoot in reply to Piglet1956]

It would give just a small increase in FTE. It wouldn't take it anywhere near the top of range.

[Piglet1956 in reply to Lalatoot]

FTE? Sorry not sure what that is.

[Lalatoot in reply to Piglet1956]

That's my phone correcting things. It is FT3 I mean.

[Piglet1956 in reply to Lalatoot]

Oh thank you. Happens to us all.

[SlowDragon Administrator]

Low Ft4

Personally I would experiment with increasing levothyroxine a little.

FT4: 12.2 pmol/l (Range 9 - 21) 26.67%

Initially to 87.5mcg 4 days a week and 75mcg 3 days a week and retest in 6-8 weeks

This would improve low Ft4 and probably increase Ft3 a little more

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested

[Piglet1956 in reply to SlowDragon]

Yes that makes sense to increase gently SlowDragon, though I'm concerned the endo will freak at the suppressed TSH and want a decrease, never mind an increase as he wanted me to reduce to 50mcg and I refused. Are you aware of any research that says suppressed TSH is okay when on Lio?

My last vitamin results were from April 22 -

Vitamin D - 161 (50-200)

Ferritin - 115 (13-150)

Folate - 16.76 (>3.89)

B12 - >150 (37.5-150)

[SlowDragon Administrator in reply to Piglet1956]

Vitamins are good

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

You can point out that

NHS England Liothyronine guidelines July 2019 for someone on just levothyroxine is TSH 0.4-1.5

sps.nhs.uk/wp-content/uploa...

See page 13

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

ncbi.nlm.nih.gov/labs/pmc/a...

In the patients with mildly suppressed TSH (0.03 < TSH ≤0.3 μIU/mL) and fT3 levels equivalent to their preoperative levels, all metabolic markers remained equivalent to their preoperative levels.

Conclusions: The serum biochemical markers of thyroid function in patients on LT4 following total thyroidectomy suggest that the patients with mildly suppressed TSH levels were closest to euthyroid, whereas those with normal TSH levels were mildly hypothyroid

….In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.

Re suppressed TSH …..it’s like religion….some believe absolutely that TSH shouldn’t be suppressed….and you may find it difficult/impossible to convert them to new belief

[Piglet1956 in reply to SlowDragon]

Thank you - you've given me loads to look at here. Much appreciated.

[McPammy]

I was prescribed exact same dosages as yourself with very similar blood results. What I did to bring my TSH just within range was to lower my liquid Levothyroxine dose by 10%. I now take 68mcg Levothyroxine a day and 5mcg T3 twice a day 8hrs apart. My latest TSH was 0.93(0.35- 5.50). My T3 level was about half way and my T4 level just under half way. This was without ingesting medications prior to blood draw. I wanted to keep my TSH within range as my NHS Endo threatened me that if it went suppressed he’d stop my prescription for T3! Both my NHS and private only Endocrinologists are extremely pleased with my blood results. No one is more pleased than myself. I’ve now got my life back after suffering on mono therapy of Levothyroxine for many years. I’ve never felt so energised in many years. I’m a poor converter and positive DIO2 gene tested. So, if you can, slightly lower your Levo but don’t alter your T3 dose. See if this helps. It was just my attempt of keeping my prescriptions coming without a fight.

[Piglet1956 in reply to McPammy]

Hello McPammy. Thanks for sharing some of your history and experience. I think I would be prepared to offer up a tiny dose sacrifice to keep the T3 if it comes to that but I hope it doesn’t. Glad to hear you’re feeling so much better. I have the DIO2 gene too -though neither of the two endos I’ve seen have been in the least bit interested in that.

[waveylines in reply to Piglet1956]

There in lies the absurdity of treatment on the NHS. Both endos should be interested in your D102 gene!! Sadly its likely they dont know what it means!! Lol....

[Pearlteapot in reply to waveylines]

My private endo is not interested in my homozygous D102 result and says my T3 23% through range is perfectly fine. I have no problems with conversion at all, I am told.

[waveylines in reply to Pearlteapot]

Oh dear.......that says it all! Poor you. Complete rot as you know. Is there anyone else you could see?

[Pearlteapot in reply to waveylines]

I was thinking I should go with his suggestion of increasing T4, I have space for it and see if that increases my T3. If that doesn't work then I will have to think about a change of endo as I feel horrible.

[Piglet1956 in reply to Pearlteapot]

That’s disgraceful. Is he or she still your endo?

[McPammy in reply to Piglet1956]

My GP and both my Endo’s are interested in my DIO2 gene status. When I first got my DIO2 positive gene result, I took a copy of the report to my GP. He suggested he’d scan it onto my NHS file. You can’t deny the facts. Both my Endo’s have commented that I need the T3 Liothyronine with this gene fault. Although the NHS Endo was harder to convince and he did threaten me with withdrawal of T3 if my TSH went suppressed. I think I’ve managed to just about do it with my own experiments on reducing Levothyroxine ever so slightly which made all the difference to my TSH remarkably. I’ve had over 30 thyroid blood tests now since I started T3 and all bar two in the beginning have been in range with all 3 (TSH, T3 and T4). I guess I’ve been lucky. But it’s not just about satisfying these Drs. It’s about how you feel day to day. I must admit I’ve never felt so good and youthful since the introduction of T3. I do hope you get sorted.

[Piglet1956 in reply to McPammy]

Glad to hear you're a success story. Im just on a T3 trial so need to manage NHS endo carefully.