Further T3/T4 Guidance Needed Please

[FancyPants54]

I had a blood test last week, on 5th February. I was taking 100 Levo and 12.5 T3 per day. I had been dosing 100 T4 + 6.25 T3 when I got up and 6.25 T3 at 4pm.

My results were as follows:

(Blood test taken on an empty stomach from previous evening. Collection time 8.15am. Last levo taken 24 hours before test and last T3 taken 9.5 hours before test. No B vitamins and biotin for a week before test).

TSH - 4.88* (0.27 - 4.2)

Free T4 - 16.0 (12.0 - 22.0)

Free T3 - 4.5 (3.1 - 6.8)

Triiodothyronine (T3) - 2.2 (1.3 - 3.1) (This was flagged up as a test not usually done. Must have been a lab mistake as I've not had it included before.)

This was my first retest after dropping Levo to 100 from 125 before Christmas and adding in the T3 (see my profile for details). My TSH has risen, which I didn't expect. My T4 has dropped a little (as expected) but my T3 has barely moved. Up just 0.4.

What do the T3 users think? I immediately increased my T3 to 18.75 a day by adding 6.25 in the morning to make my waking dose now 12.5 T3 with the 100 Levo.

I didn't feel any improvement. And now, over a week later, I feel more tired and fed up. This could be menopause hormone issues as I've had a bit of a do this week, or could be related to my thyroid dosing.

I am feeling very fed up today. I don't seem to be getting anywhere yet.

[SeasideSusie Remembering]

FancyPants

I have found that when I alter my dose of T3 (same as with Levo), nothing happens to start with, I really do need 6-8 weeks after the dose change to notice any difference. Then I think, well I do feel different, and it shows in my test results. So maybe just one week after increasing your dose of T3 is too soon for you to feel anything too.

Don't forget these results

June 2018 - Thyroid Peroxidase Antibodies - 32.8 IU/mL (0 - 34)

Sept 2018 - Thyroid Peroxidase Antibodies - 28.6 kIU/L (<34)

These results are so close to the rop of the range that Hashimoto's is very likely. I don't know if that has been mentioned before, I haven't read through all your previous posts. But that could be involved too.

[FancyPants54 in reply to SeasideSusie]

Hello SeasideSusie

I'm wondering if I made a mistake in lowering my Levo to 100 from 125 at the start of T3. Towards the end of the 6 weeks prior to this last test, I had got way more tired and sore jointed etc. Just so weary. And my T3 level has hardly budged at all but that drop in Levo and T4 result could account for that tiredness. I'm just surprised I've not seen some improvement this last week. Another 5 weeks feeling this tired is going to be hard to swallow.

I've been testing my thyroid for many years and never had above range antibodies. This is the highest they have been. Maybe something going on but not a lot at this stage.

I need to feel some energy from somewhere. I am struggling with my menopause a lot though and HRT is being as hard as this thyroid to make an impression on.

Given these results, if it were you, what would you do now?

[SeasideSusie Remembering in reply to FancyPants54]

I'm wondering if I made a mistake in lowering my Levo to 100 from 125 at the start of T3.

I think you may be right.

From your profile

15.11.18

Blue Horizon Medicals

Taking 125mcg Levothyroxine a day

TSH 4.04 (0.27 - 4.2)

FT4 18.5 (12.0 - 22.0)

FT3 4.1 (3.1 - 6.8)

Started adding 6.25 Tiromel T3 with my Levo. on 22.11.18

Increased to 12.5mcg T3 on 07.12.18

Reduced back to 6.25mcg T3 on 10.12.18 because I felt horrible.

20/12/18

Increased my T3 dose by adding a second 6.25 dose at 4pm each day. At the same time I reduced my Levo dose by 25mcg. This change has worked fine. Now holding steady at 100 Levo and 12.5 T3 per day until retesting at 6 weeks (first week in February).

So you reduced Levo from 125mcg to 100mcg in December without retesting FT4? I wouldn't have done that, the reason being that adding the T3 would very likely have reduced your FT4 anyway, and reducing dose of Levo by 25mcg will make a difference to your FT4. Also, any natural conversion that you do have will mean that lowering your dose of Levo means lower FT4 and lower FT3 from conversion, regardless of the fact that you're adding T3.

You may be like me, I need my FT4 and FT3 around 75% through range on combination Levo/T3. Some people manage fine with a low FT4 when adding in T3, but I feel dreadful with a low FT4.

If these were my results, I would have added 25mcg back in, retest in 6 weeks. If your FT4 went back up to where it used be (around 18.5), next step would be to get FT3 into the upper part of the range so add an extra 6.25mcg, wait another 6 weeks and retest levels again. But you've already increased T3 so maybe you should wait 6 weeks, retest and reassess.

[FancyPants54 in reply to SeasideSusie]

I don't want to wait another 5 weeks feeling like this. I have many things I need to do and I can't do them like this.

I could drop 6.25 of the T3 and put the 25 Levo back in and hold that for 6 weeks. Would that be a safe thing to try?

[SeasideSusie Remembering in reply to FancyPants54]

I can't say how you will feel if you do that, but you could try.

[Judithdalston]

Yes, you might well have made a mistake dropping your levo to 100; I dropped mine from 125 to 75 mcg to find that all TSH, FT4 but also FT3 went down. I’ve been on T3/T4 combo for nearly a year now and still very slowly, as Seasidesusie suggests, adjusting doses. Have to be patient unfortunately!

[FancyPants54 in reply to Judithdalston]

Oh I've been patient. I've been struggling with rubbish doctors and then on my own for a year and a half now and still only where I am.

Not sure what to do. Add in more T3 to make up for the lost T4. Add in the missing 25mcg Levo or hold. I'm barely functioning now. I don't see how I can wait like this. I have so many claims on me and I can't cope with them.

[Hele1 in reply to FancyPants54]

Oh fancypants I feel your pain. I too have been slowly adjusting doses to no avail and during menopause you don’t know what symptoms relate to which hormones.

Since researching oestrogen dominance I stopped the oestrogen part of my hrt and feel a lot better. Low cortisol also effects how we cope with stress and leaves us feeling overwhelmed. I wish doctors were more willing to test all our hormones and treat accordingly instead of their one size fits all approach.

[Judithdalston in reply to FancyPants54]

Looking back at your extended medical history ...did you not ever raise your levothyroxin over 125 mcg to see if you could get your FT4 to top of range , and then what your FT3 was? Last Sept you seem to be converting T4 to T3 ok. I’d raise the T4 again; I have found T3 is difficult to introduce. Unfortunately I can sympathise with your frustration and ability to barely function, but pushing yourself will make you feel worse, do try to limit the claims on you with work/ family help (I had to resign my job, and after 13 years of hypothyroidism still have long periods barely able to function, and started DIY route, and self T3 dosing over the last year).

[FancyPants54 in reply to Judithdalston]

No I didn't because by November my T4 was going up and T3 was dropping. A doctor I see for HRT said I needed to add in some T3 and the advice here was the same because the gap was getting too wide. My own GP didn't want me to do any further raises from 125 anyway!

In discussing how to add the T3 one person suggested cutting the Levo back by 25 and introducing the T3 and another said to leave it and just add to it. I didn't want to rush things so I went for the "safe" option of reducing the levo. Wish I hadn't. I definitely have more hypo symptoms now. I thought adding another 1/4 T3 tablet would help after the latest blood test, but it's made it worse.

I think I will try dropping back to 1/2 a T3 tablet a day and increase the Levo back to 125 and hope I can cope with that whilst it sorts itself out and retest in 6-8 weeks. I can't think what else to do now. And I am feeling very incapable of making a decision.

I run my own business. Trying to sort things out pre Brexit and trying to work out what the hell to do post Brexit as a lot of my customers are in the EU. Both parents are now in their 80's and need help, especially as Dad is now very sick and Mum is having to be a nurse for him. And just to make life easy the family has decided to kick off over a piece of farmland they own and Dad's a trustee of and they are threatening him and being generally unpleasant and stressing him and I'm trying to take the pressure off and sorting things out for him. So I really could do with being able to think and to walk. I can barely walk. My legs feel like lead and my knees are really painful. Sorry for the rant. I'm just so fed up. I've been unwell now for 6 years.

[Judithdalston in reply to FancyPants54]

I can see how you are very busy! I was diagnosed with fibromyalgia nearly two years ago having had considerable problems with leg, knee and hip pain, swelling and stiffness, which the leading late thyroid specialist , Dr. Lowe, believed was caused by undertreated hypothyroidism. You’ll find his archived Q&As and papers on the Thyroid U.K. website. My first tiny 1/8 th of a pill T3 within hours helped unstiffen my hips, and I try to walk up to 10,000 steps daily ( been difficult to do that much over last 4 or so months as I think the cold, damp etc makes a difference to my pains/ stiffness. If weather/ pressure affects you too then it can be years till you work out what causes your symptoms. Try upping your T4, then adjust your T3....not that I am an expert just a feeling of ‘been there, done that’. Good luck.

[FancyPants54 in reply to Judithdalston]

Hi

Yesterday morning I added the Levo back in that I had reduced when I went up to 12.5 T3. And I reduced yesterday's T3 back to 12.5. A MUCH better day. I could think and get on and do. I was so much happier. I had run out of energy by bedtime and things were stiffening up again. But it was bedtime so not as important. Fingers crossed this might help. I will now have to hold it for the allotted time and retest of course. So I think it means I need that T4. I may need T3 as well, but not in place of the T4.

[FancyPants54 in reply to FancyPants54]

I have to remember as well, that so far I've never managed to get my TSH under 4. So I've a long way to go.

[Judithdalston in reply to FancyPants54]

Good luck...record how you feel, and what you did too....for future reference!

[FancyPants54 in reply to Judithdalston]

I keep a diary. It can make for depressive reading but it's useful.

[maddiepoopoo]

Could I ask a question pls, I am om 50 micro gram levothyroxine and have been since October 2018 and feel no better , extreme fatigue, and joint pain, this is t4 is t3 another tablet I should be on , not getting very far with my own GPS. I was diagnosed with hasamoto disease. I look for anyone to help please at the end of my tether. Thank you

[FancyPants54 in reply to maddiepoopoo]

Hi

You need to start a new thread of your own and ask your question there so that people can help you. Before you do that, get a print out of the last thyroid blood test you had done (phone the surgery and ask for a copy) and then you can include your blood test results in your post so that people can better help you.

You don't need to worry about T3 at this stage.

[FancyPants54]

Thank you for those tips. I shall keep those on hand. I suspect I need a decent level of both hormones, but I definitely felt a lot worse adding in the third 6.25 of T3. Energy levels dropped to slug level. I was splitting it, but hated the 3 hours in the afternoon when I couldn't eat or drink anything other than water. It's freezing in my warehouse in winter and I need tea and because I don't get to eat lunch at lunch time due to my body clock being out of line with everyone else and the time the courier arrives to take the daily orders out, I need to be able to snack in the afternoon. I was eating breakfast and then finding I couldn't eat any lunch until 5pm after I returned from the post office run and then I was desperate and it was just a few hours until dinner. Not a happy person like that.

I'm just so over the 6 weeks wait every time I make a change. I felt good the other day when I added the 25 Levo back in to take me back up to 125 Levo and dropped back to 12.5 T3. I was OK yesterday too until about 5.15 and then my mood crashed and I was exhausted and unable to walk without pain and a feeling of desperation. Today I'm already slightly anxious and miserable.

I'm pretty sure it's legit T3 (Tiromel from Turkey) because it's an old batch and I've used it before. Also, the first day I took 6.25 this time around I was wired for the first couple of hours and then pretty buzzing for the rest of the day so it definitely did something. My problem is that I usually really feel the effects of what I do on the day, even if I increase T4 I feel it on the day, and I usually feel better. But from then on the effects just disappear as if they have been throttled back. So frustrating.