Finally found the sweet spot - T3/T4

[Harley4]

Hi there,

Just a quick update, after what seems like forever, I think I have finally found the sweet spot for me...for now anyway.

Feeling good, energy levels are ok (can't remember the last time I had an afternoon nap) and most recent blood results look good. Just managing to keep the TSH detectable. Please to see that my endo's comment about T3 being like speed (only gives a short term high) was rubbish. Fingers crossed this continues.

Only downside is I've stopped losing weight😱 Nothing since introducing the T3 in September. I think I need to re-visit my calorie intake and see if I'm just overeating a bit as I've found there's a fine line between too much or too little to have an impact! 😂

Harley

[SlowDragon Administrator]

Thyroid levels look good

When were vitamins last tested?

Had a quick look at previous posts and profile page

Couldn’t see any mention of trying gluten free or dairy free diet

[Harley4 in reply to SlowDragon]

Gluten free for the last 2 years but still eat small amounts of dairy.

Vitamins were tested in the last 6-8 months and were in the right sort of range. I have continued to supplement and am keeping a check on Iron levels. Ran a full iron panel in October and they looked ok, I think.

Active B12 >150 pmol/L (>37.5) - Aug 2022

Vitamin D 109 nmol/L (>50.0)- June 2022

B12 310ng/l (150-1000) - June 2022

Folate >23.4 ug/l (2.0-18.8) - June 2022

Iron panel - Oct 2022

Ferritin 90.5ug/L (13 - 150)

Iron 16.9 (5.8-34.5)

TIBC 44 (45-81)

UIBC 27.1 (24.2-70.1)

Transferrin Saturation 38.4 (20-50)

[SlowDragon Administrator in reply to Harley4]

humanbean might pop along and comment on iron results

I think low UIBC and low TIBC perhaps suggest chronic illness

labtestsonline.org.uk/tests...

[Carlax in reply to Harley4]

Hi Harley4, I am very pleased fornyou. Thanks for sharing. Your comment gives me hope. Are your blood tests done with medichecks , thriva? I have used both but had issues with the delivery of the tests. Many thanks.

Carlax

[Harley4 in reply to Carlax]

I’m glad, hopefully you’ll get there too. I know it’s a long and frustrating road and I felt like I was never going to feel any better for a long time. As for the blood tests, I’ve used Medichecks several times and only once had an issue with the post but I think that was a Royal Mail issue. For standard TSH, T4, T3 checks, I usually use Monitor My Health as it’s cheaper and usually a quick turnaround on results too.

[Litatamon]

How wonderful Harley4. Happy for you.

It is great to read about successful outcomes.

[Harley4 in reply to Litatamon]

That’s why I wanted to post as sometimes it feels like there is no light at the end of the tunnel.

[arTistapple]

Oh Harley4 it looks so neat and tidy. I see you did not drop your levo dose until after you commenced T3. Were you taking advice from the forum or did you do this from your own perception and blood tests. It just looks so ‘knowing’. You very clever person. Congratulations and Long may it last!

[Harley4 in reply to arTistapple]

I’d like to take the credit but I’ve simply followed the advice from the very knowledgeable admins on this forum. Key, I think, is being patient- very difficult for me, but if you change too much at once you can’t tell what is really going on. I have to say I was initially very surprised to see the impact introducing T3 had on my T4 levels as I wasn’t expecting it but apparently it’s quite common to see a drop. Also, I think going gluten free and optimising my key vitamins also really help. I’m sure there will be bumps in the road but at least I’m feeling a bit more positive.

[arTistapple in reply to Harley4]

It’s very encouraging seeing it set out the way you have. Thank you for getting back to me.

[Harley4 in reply to arTistapple]

You’re welcome. It’s taken me 4 yrs to get here so the image is only a snapshot of the journey.

[arTistapple in reply to Harley4]

Still you picked out the very important guiding points. I am two years since diagnosis with lots of ups and downs since. The only steady thing has been my ratio of T4/T3 which I find fascinating. However in my keenness to improve that, I have (I now understand) overlooked the T4 levels (not enough) when I started the T3 plus not taking the T3 at least two times per day to see me through the full 24 hours. No worries you do not have to reply. I am really thinking out aloud from what I have learned from your post. I am so glad you posted. I take joy in your position and I have seen it in action. A great learning experience. Thank you.

[Harley4 in reply to arTistapple]

I’m the same, I keep a chart of all my results so I can try and find some kind of pattern or relationship between different things that are going on. There’s no magic formula that suits everyone. I’ve had to learn so much along the way just to try and understand what I could do to make myself feel better as my doctors seemed to want to push me to others rather than explore all options. It’s a shame but seems to happen a lot. It’s good that we have this forum to share experiences, frustrations and get some much needed advice.

[arTistapple in reply to Harley4]

You can say that again. I have managed to make a mess of things even with the advice - it takes a while and mistakes for me to begin to get it. I am pretty sure I would be in a much worse situation if I had not found this forum.

[Hashiboy]

Thanks for sharing the table Harley4 good to hear from someone doing well.

[buddy99]

That is so fantastic, Harley! It is good to hear about those successes amidst all the battles being fought. Super happy for you! Your patience paid off. What a wonderful reward!

[Zannadoo]

Was u on ndt before as I'm thinking of going on levo and t3 as endo has agreed to ask my gp to prescribe it .I'm currently on thyroid s but it's working out expensive x

[Harley4 in reply to Zannadoo]

Fingers crossed it works out for you. My Endo was dismissive about trying the combo from the start so I’ve had to self-source but it’s been worth it.

[Zannadoo in reply to Harley4]

I saw him first time wed and wasn't expecting him to surport me. But he said as I have hasimos and already taking t3 it would be wrong to stop it .I nearly wasn't going to go to the appointment but my gp wouldn't prescribe levo without me seeing an endo like u I was planning to self sorce t3 and add it to levo see how it works. He did ask if I'd take just levo at first so he could see my results on it .but I don't think I want to make myself unwell so I won't be doing that. My levels are good on ndt with a small amount of t3 added but ndt is expensive. X

[Judithdalston]

I am pleased your endo is accepting the TSH at 0.02, even 0.01, mine seems to be regarding anything below 0.04 as ‘ undetectable’! How a given figure can be undetectable, I am not sure, presume it’s that until recently assay machines couldn’t measure that accurately for eg it was 0.05 or undetectable. It’s strange but he was not so adamant previously when TSHs were below the 0.05…his dosages keep my FT3s around the 4.5 level, and not surprisingly if I tweak that up my TSH goes ‘ undetectable’! 5 years of tweaking T4 and T3 and still not getting it right, was better DIYing.

[Harley4 in reply to Judithdalston]

I’m no longer under the ‘care’ of an Endo but I’m sure he would have an issue with my current TSH. He discharged me back in July, having only offered the advice that I was over medicated and should reduce my levo - my T3 was only 2% through the range as I am a poor converter. He refused to consider combination treatment and told me my ongoing fatigue wasn’t a thyroid issue and I should get checked for sleep apnea and referred me to the Chronic Fatigue Clinic - which I politely declined. Anyhow, I’m over that now and part of me would like to go back and tell him how I’m now feeling (doubt he’d actually care) but I’m just keeping my head down. I’m sure the GP will want to check my bloods at some point but by then I should have several month of history to show them that the T3/T4 combo is working for me. Not that I’m expecting them to prescribe it for me at any point but so long as they don’t interfere!

[Judithdalston in reply to Harley4]

it was as a result of my Gp doing bloods ( I have other conditions that are yearly monitored) by bloods), and regularly being frightened by low TSH and consequently kept reducing my levo prescription ( in theory going down from 125 to 50 mcg) that I switched from DIY combo treatment to using a referred but private endo. The Gp still wants to reduce dosage but I have an endo letter on my file explaining my treatment and lower TSH. Now for the first time in years the surgery has just tested TSH, rather than FT3/4 too…so will have to do private bloods as well. My endo did utter on phone appointment before Xmas that FT3 and Ft4 levels didn’t matter, just the undetectable TSH, and seems to have changed his tune over the last 3 years…odd!

[Harley4 in reply to Judithdalston]

yes, very odd. I also went down the private Endo route by one that was recommended and he started off saying all the right things. I got a letter to give to the NHS Endo stating I was a poor converter and T3 might be worth trialling but it was just dismissed. Think my region is completely against T3 trials. I went back to the private Endo to get a prescription but he changed his tune so I’ve no idea what is going on. I’m sure I’ll run into some issues with the GP, I’m guessing they’ll do a meds review annually so who knows what will happen. I’m stocking up in levo in the meantime, just in case they try to drop my dose.

[elsaldo]

Great to see you have found your sweet spot. Gives us all hope we too shall find ours one day x