Test results and vitamins: should I quit the NHS T4 / T3 trial?

[Lotika]

Hi -

Following on from this, healthunlocked.com/thyroidu...... I now have my latest test results. I've listed previous ones for context, too.

I feel like you all know the story by now, but just in case, the background is that I started the NHS T4/T3 trial in December and my god, they don't call it a trial for nothing. There have been days where I've just sat and cried. I think the numbers tell you how awful it has been. The T3 has reduced my joint pain significantly, improved my sleep quality and I generally feel like my "woman" hormones are doing better - my periods are back how they were before Hashis. But, I've less drive than I had with my fT4 at 70% through range on levo only and have about every major hypo symptom I can think of except constipation, so brain fog, poor concentration, exhaustion, muscle pain, some joint pain... You know them well!

So, I need to share the results with the endo. He has been pretty good and given me the dose increases I've asked for and I believe he understands that he won't get me well AND keep my TSH within range but I don't know exactly where he will draw the line on that or call time on the trial. I've listed the results from before I started the trial through to the latest - so that you have the trends - so the last results are at the bottom.

Range for TSH - 0.27 - 4.2

100 LT4

TSH: 0.34, FT4: 70%, FT3: 11%

------

50 LT4 + 10 LT3

TSH: 1.16, FT4: 43%, FT3: 41%

-----

75 LT4 + 10 LT3

TSH: 0.66, FT4: 47% FT3: 28%

-----

75 LT4 + 15 LT3

TSH: 0.2, FT4: 19%, FT3: 45%

------

100 LT4 + 10 LT3

TSH: 0.11, FT4: 50%, FT3: 45%

-----

Latest vitamins (NB - I didn't do folate to save ££ / because it is always super sexy).

B12: 351 (145-569). Does this need work?

Ferritin: 89 (15-150). Really proud of this one - it was 44 back in December and I've been eating liver and black pudding to raise it. Further to go, but getting there...

Vitamin D: 96 (50-200). Better than I expected as I've not been supplementing for the summer, but could go a fraction higher by taking maybe one tablet a week?

-----

So, back to the thyroid meds. I'm honestly not sure how much more of this I can take. I've had 7 months of feeling beyond pants and truth be told, I generally felt better on 100 mcg T4 only, even with my fT3 at a miserable 11% on a good day! I need to get a job at some point and I don't have the energy, drive or motivation on this level of medication. And I can't go back into Sales on the previous level of mediation, but there's other work out there in the world, I'm told - it just doesn't pay so well!! And then there's the endo, who has generally been pretty good at giving me the dose changes I ask for... but whose patience (and low TSH tolerance) must surely run out soon?

So, basically, do I get my Big Girl Pants on and ask Mr endo-man for 125 T4 + 10 T3 to see if I can get my fT4 to 70% whilst having fT3 around 45% again, or do I just throw down my cards? I think I know the answer, don't I? Please sir... can I have some more? Surely I didn't go through all this to crumble now...

Gosh, that was a lot - if you're a brain-fogged hypo you did well to get to this point! Any thoughts on vitamins or what, exactly, I should be doing with my towel(!) or indeed help in locating my Big Girl Pants, would be most welcome!

Lotika.

[janeroar]

Ask for what you need girl. If you don’t ask you won’t get.

[Lotika in reply to janeroar]

Done! Missive sent to the Endo man... fingers crossed!

[tattybogle]

Life's too short to worry about pissing off an Endo.. (or looking daft on front of one)

Anyway you don't have much choice , you're going to look daft to someone whatever you do next.

If you don't risk LOOKING daft/deluded/pushy in his eyes, in order to try your theory , then you'll be left FEELING daft for ever, for not trying it.

If 'symptoms of overmedication' don't seem to be among the problems you've had with this trial .. it would seem logical to try and get fT4 back up to near where it was with improved T3 level.......after all that IS the basic principle of T3 trial .. 'try adding a bit of T3 to make up for what's missing on Levo alone' .. so it could be argued that you haven't achieved that yet... you've added the T3, but at the moment the fT4 is very obviously reduced from previous level.

You need to know if that will work, and the question is "if not now .. when?"

(P.s big girl pants are usually at the back of the top drawer, underneath the sexy~but~too bloody~uncomfortable underwear )

[tattybogle in reply to tattybogle]

Also ..consider this .. suppose you were person 8/9/10 on this study of 10 healthy subjects.... it's perfectly possibly that raising T3 further and keeping Levo at same dose is a reasonable thing to try.

.

[Lotika in reply to tattybogle]

Thank you and good thought re T3! I've emailed him saying that I'm not going back to having fT3 at 11% through range whatever... so he'll either need to increase meds whilst keeping me on T3, or he'll have to give me massive doses of T4 so that my natural conversion can manage something half reasonable, so we're staring down the barrel of a low TSH either way and frankly, as the patient, I'll take any risks associated with that over continued hypo symptoms, thank you very much! I did say that whilst increasing T4 was my preference, I'd gratefully shut up and do as I was told if he thought increasing T3 was a better plan! We shall see what he comes back with...

[tattybogle in reply to Lotika]

i like your style of big girl pant's xx

[SeasideSusie Remembering]

Hi Lotika

I take Levo and T3. My T3 is not prescribed so I don't have to rely on an endo to accept my results. I need FT4 more or less in balance with FT3, with both in the upper part of their reference ranges.

I have, over the years, tweaked doses of both and because I have other conditions which cause fatigue and other symptoms, sometimes it's difficult to know if it's my thyroid or something else, so I do rely on blood tests to know that I'm as optimally medicated as I can be.

My most recent test, this week, shows FT4 at 65% and FT3 at 78% and this is the sort of area that I know I need my levels to be.

There are a few of us on the forum that need these sort of results when on combination hormone replacement, and it could very well be that you do to. You felt OK with FT4 around 70% so I think it's certainly worth trialling a higher dose of Levo. If your endo is hesitant, ask for 12.5mcg extra, see how that goes. I've found, during my experiments, that even very small adjustments (even going from 112.5mcg Levo to 117mcg) can make a big difference.

**

B12: 351 (145-569). Does this need work?

I would certainly increase mine. B12 is recommended to be near the top of it's range.

Presumably this is 351pmol/L and this is the equivalent of 476pg/ml. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

It probably doesn't need a separate B12 supplement but a B Complex containing methylcobalamin. Even if you did take a separate B12 you'd need a B Complex as well to balance all the B vitamins. Be aware that if B Complex also contains Vit C then that keeps the body from using B12. There should be a 2 hour gap between Vit C and B12.

**

Ferritin: 89 (15-150). Really proud of this one - it was 44 back in December and I've been eating liver and black pudding to raise it. Further to go, but getting there...

Well done! I'm envious. I've been eating liver weekly for about 18 months now and last month showed my ferritin had gone down to 59 from 69.

**

Vitamin D: 96 (50-200). Better than I expected as I've not been supplementing for the summer, but could go a fraction higher by taking maybe one tablet a week?

I like mine at the top of the range recommended by the Vit D Society and Grassroots Health - 100-150nmol/L. I was severely deficient and seem to need to supplement at the same dose all year round. Yours is "OK" and if you want to improve it you could see what 1,000iu D3 daily does - don't forget the important cofactors - Vit K2 MK7 and magnesium.

[Lotika in reply to SeasideSusie]

Thank you, SeasideSusie, that's really helpful! Having both frees in that kind of range sounds awesome, but I'm not sure I'll ever manage it without mainlining meds. I will heed your advice on the vitamins once more - it was that which got my ferritin to such heady levels. I am quite liking liver these days and black pudding too! I do have my own little stash of T3, so I guess I could always continue on the sly if the Endo man loses his nerve over TSH. From hanging out here and reading quite a lot of posts over the last 6 months, as well as some books, etc., I'm feeling confident about self-medicating in the future, should it come to it.

[Gingernut44]

Fold up the towel and put it firmly back in the cupboard. Get those big girls pants out of the drawer and wear them with pride - go for it. You can’t let them win. 🤭