dose increased but all results, both TFT and Vits worse

[Pearlteapot]

Hi All

I am supposedly leaving on holiday tomorrow but been feeling really tired over the last week so decided to test and see what's going on before I leave. Its only 2 weeks since I increased dose on 23 July from 75/100 to 100mcg so perhaps the advice will be to hold tight. Its still concerning that my levels have all actually dropped, as have my vitamins. My CRP has increased a little from 0.86 to 1.00

I have tested homozygous for D102 but not yet had a chance to speak to an endo about this as was waiting for 6 weeks to elapse from my dose change on 23 July and getting back from holiday. Now I am not at all sure that I feel well enough to leave tomorrow, which is incredibly depressing.

On 30/6/22 my result (NHS) was TSH 1.57 (0.3-4.2), T3 4.3 (3.1-6.8) T4 18.4 (12-22)

On 8/8/22 my medicheck results are TSH 2.2 (0.27-4.2) T3 3.91 (3.1-6.8) T4 15.2 (12-22)

My T3 is 21.8% through range. Hardly surprising that I feel as I do.

Vit D is now 86 (50-200). On 22/6/22 it was 109 nmol. I have been supplementing with D3/K2 nature provides 4000iu. I was worried that if anything I would have gone over range but I've dropped.

B12 is now 71.2. On 30/5/22 it was 76.7 and I have been supplementing daily since then with Thorne Basic B but it has dropped.

Ferritin is high. I'm waiting for a full iron panel to come through from medichecks because my iron has been weird (low serum and low TIBC) so wont' comment further on that for now.

Miserable. Do I stick or change. I could increase to 100/125 but increasing T4 looks like a chocolate teapot at the moment. Do I cancel my holiday and try to get appointment and press for T3. or do I wait and see if the current dose increase improves over time.

Symptoms are terrible fatigue, hearing loss, hair loss, hot feet, sore finger joints starting to get depressed because improving seems constantly out of reach.

Opinions and wise counsel please.

Thanks in advance.

[Lalatoot]

Pearl, too early to test. After any increase weeks 2 and 3 are the worst for me. So many times I have been near to giving up on an increase because of it.Hope things improve and you enjoy your holiday.

[Pearlteapot in reply to Lalatoot]

But I don’t just feel worse, although I do, my biochemistry is worse after an increase. How can that be? How can that be?

I am 6 months into treatment and My t3 is 21% through range. My heart, brain and hearing are all suffering. I can hardly move off the sofa. I can’t do my job properly. Yet apparently I’m supposed to just wait another month like this in case the dose increase of 12mcg t4 miraculously lifts my T3 into some workable level? I don’t understand how that makes sense.

[Lalatoot in reply to Pearlteapot]

Your results should be ignored as you need to give things time to settle after an increase - at least 6 weeks.Having said that it is a small increase and you do have room for a bigger one. Increases in levo should be up to 25mcg added to your dose so you could add a little more.

[Pearlteapot in reply to Lalatoot]

Thanks @lalatoot Can I increase in the mid-6 week period and start the period running afresh from the increase?

I've cancelled my trip sadly. I can't travel alone while feeling so dreadful. It's too vulnerable. I'm going to speak to the endo and see if I can use my booked annual leave to trial t3... or summat! Although my vits aren't as good at the moment as I thought they would be.

[Lalatoot in reply to Pearlteapot]

Yes you can increase and then start afresh for 6 weeks. Though now I have read your post of about a month ago i see you have had trouble increasing before. I found it hard to increase and as a result I have always split my dose. I take it first thing and bedtime.I wouldn't rush to get t3. Build up levo and vitamin levels first. From reading about your endos reaction to your levels and palpitations I think it will be hard to convince them to prescribe T3. You must also understand that adding T3 is not a quick fix. It took me 2 years of adjusting levo and T3 doses, one thing at a time, then waiting 8 weeks and doing bloods until I felt I was on doses and dosing regimes that I could stay on longer term. You will read others on here saying similar.

Sorry you have had to cancel your holiday. I know what that is like. Look after yourself and be kind to yourself over the next few weeks.

[Pearlteapot in reply to Lalatoot]

Thanks. So sad, I had organised a really good train trip around Scandinavia and the Baltics. I changed Endo because of that actually! This one has prescribed T3 to other forum members, I know that. Yes T3 seems very marmite. For some it is a life changer and others have a lot of distress and trouble on it, or some people in the middle who need to tweak a lot, like you. I'm a little scared of it but given my very low T3 level on Levo I'm keen to try although I also understand that he will more likely try me on a higher T4 dose first. But I cant stay like this.

[tattybogle]

Hi Pearlteapot , you're not going to like this , but i'm going to write it anyway . Realistically, you need to treat yourself as 'convalescing' for about a year after diagnosis. You were very hypo when diagnosed , and that was only about 3 months ago.

it will have taken you a long time to get that ill ., and while it was happening your body adapted/compensated to function like that (until it couldn't manage to keep it up anymore) ...... and it will take your body's complex systems a long while to slowly get back to functioning something like normal (even once you have the right thyroid hormone levels again)

Even if you could give yourself 'optimal levels of everything' tomorrow , you wouldn't feel better tomorrrow .. it would take several weeks at least, and probably several months for your body to settle into, and then make proper use of, those optimal levels before it could get everything working together again properly .

In all honesty ,it was too optimistic to hope to be well enough for a big trip this year . Take a rain check till next year.

When i have changed levo dose b 12.5mcg , the first 5 weeks were not a true representation of how i would actually feel that dose.

The 'wait for 6 weeks' malarkey is not just to wait for the TSH to catch up with your hormone levels on a new dose... it is to wait for your whole body to catch up .

Changing a dose changes everything. and it can feel a bit like a pendulum swinging all over the place for the first few weeks .. then everything finds balance at the new level and hopefully , (if the change was in the right direction ) you gradually begin to feel a bit better than before the increase.

6 weeks is the absolute minimum to look at how you feel on a new dose .... rushing it usually make the process take longer.

If a car has been off the road and not oiled for a year it needs gently running in again and there will be tweaks needed. Just getting the fuel gage to read 'full' and expecting it to run down the road nicely at 75mph like it did when you parked it up will lead to conking out half way to town with smoke coming off 3 wheels because your brake pads are still a bit stuck on.

We are only able to tell you this because we've all been there and bought the T-shirt too... We've all done it.. you're not alone in being desperate to get better as quickly and efficiently as possible and being convinced you need to increase dose again after 2or 3 weeks because it feels like it's not enough yet... but we have all learned the hard way that our idea of 'how fast improvement is needed' is not the same as our bodies idea of 'how fast it can actually mend itself' .

Most of this 'mending' is about cellular changes.... getting the right blood levels is just the very first part to allow those changes to take place. I'm talking about things improving at the same speed hair grows at .. or nails grow .

Your TSH was 70 ish .. you were very unwell....... so 'run yourself in' carefully ,don't expect too much this year , plan a 'road trip' next year when you know your engine is reliable and everything is oiled up again.

[Pearlteapot]

tattybogle I very much appreciate your long and kind intervention, as always. Guilty as charged in some ways. My over optimistic behaviour is because there are some periods when I feel really very well and think I've arrived at the right dose and everything is marvellous and I can go out and live life again. So off I rush.

If I have to stay on this dose, which is only a 12.5mcg increase then so be it but I've had low T3 since diagnosis 5 months ago (and presumably before then) and I'm worried about the long term effect of this on my heart, my kidneys etc etc. My heart rate was improving but is now slowing by the day and is now 45-55 when sitting on the sofa and 43 when asleep. It has decreased each day this week and I'm worried about it. I'm hoping a dose increase might help.

I just did an iron panel which has transferrin saturation at 78.2 (20-50), serum iron at 36.5 (5.8 - 34.5), Ferritin 137 (13-150), and UIBC 11.4 (, TIBC 45.4 (45-81). The medichecks doctor says the good Ferritin suggests that I don't have haemochromatosis but he doesn't know that my mother has it. Someone helpfully explained that if only one parent has it so that one is heterozygous one is unlikely to have it but there are exceptions. Perhaps this explains conversion problems, I don't know but I feel I should investigate it rather than sitting tight for another month with my iron off the charts and my heart slowing down.