Bit confused, latest test results now on Erfa. Could I have an unstable thyroid??

[Starseed56]

Hi helpful thyroid community. I’ve been on Erfa now for 3.5 months I did another blood test Monday and just have results thru. I’m now taking 60mg very early morning and 30mg lunch time (so timing not ideal if this to keep away from eating!) The October test was just after I upped the doseage from original 1.5 x 30mg a day, since then I have switched to the dosage just mentioned.

TSH 0.092 (0.27-4.2). October test was 4.51 August (before switching to Erfa) was 2.97

T3 3.8 (3.1-6.8) October 3.6 August 3.3

T4 13.7 (12-22) October 10.2 August 17.4

I still don’t feel great! Sleeping still awful, exhaustion and aching body most of the time. The palpitations I had when I first upped the dose have slowed down I still get them occasionally, my BP seems to have calmed down, I still get easily breathless. My weight has gone up about 4/5 lb and isn’t budging, Ive always had to be careful what I eat to maintain a reasonable weight.

I started on Three Arrows 2.5 weeks ago as my ferritin was 28. B12 needs improving (am taking a supplement) and D is too high so have reduced dose for now.

So in the last just over 3 months, my TSH has swung up then right down, my T3 has gone up by .5 and my T4 gone down by 3.7

I was expecting my tests to show I need to up the doseage again but my TSH has dived, my T3 has gained a bit and my T4 went down and is going up again to just in normal range.

I suppose I’m expecting miracles after 22 years on Levo which clearly eventually wasn’t keeping me balanced.I’m speaking to the private doctor after Xmas but tbh I respect the info/responses I get on here more because you’ve all had the actual experience of living with thyroid disease. I’m guessing I need to stay on this dose for longer and see what happens after next blood test? I’m thinking of switching to consults with Roseway as previous posts from others indicate they know what they’re doing and are helpful? But I’d like to stabilise a bit more first. My homeopath has suggested I may have an unstable thyroid if anyone has this I’d be interested to know how best you cope, what that might mean and the consequences for how you feel and how to manage. It’s hard to plot as I’ve not had comprehensive tests for years via nhs, I could find old nhs tests on line if they’re still available just for my interest.

Thoughts? Thank you 🙏💜

[waveylines]

Your TSH will be suppressed because of the T3 content in NDT. Clearly you remain under treated and need and increase looking at your actual thyroid hormone levels. . Just to clarify you are currently on 1 1/2 grains (90mg) of Erfa.

If it were me I'd increase by 1/2 grain that is move to two grains. But if you feel that's too much for you stagger it at a quarter increase at a time.

Splitting doses : to get maximum effect you are best to take it on an empty tummy a hour before your lunch or take it 3 hrs after lunch. If you haven't been doing this you won't have absorbed it fully so it's a bit of an unknown.

Most likely though the swings are due to having Hashi?

Lastly do check your Erfa batch number to make sure it hasn't been a problem. I had problems on Erfa years ago back in the day when their batches varied in active content. Messed with my thyroid levels.

[Starseed56 in reply to waveylines]

Thanks I certainly feel I’m still under replaced, if Hashis causes the swings I’m stuck with that I’m guessing?! I’ll check the batches thanks for that. I think I’ll switch the second dose to later in pm unless I skip lunch which sometimes I do or have brunch instead, to give it the best chance. I may up the second dose to 1.5 x 30g and see how that feels rather than go straight to 60mg twice a day. Yes you’re right I’m currently 1.5 grains ie 1x60 and 1x30. Thanks 🙏💜

[waveylines in reply to Starseed56]

But if your due a specialist appointment unless he/she has given you Lee way I would contact them and let them know. Generally they're not keen on patients altering doses without their say so. 😊

[Starseed56 in reply to waveylines]

She’s not a specialist tho she claims to have helped people onto armour/Erfa. I upped it last time between sessions. I’m afraid I want a saying what happens I don’t just do what doctors say any more as look where it’s got me 22 years on!

[waveylines in reply to Starseed56]

I do understand..... Took me a few years too...... It sounds like she's OK with you doing so. 😃

[Brightness14]

Your levels of FT4 and FT3 look much to low to feel well. I would up your Erfa by a quarter and then after 10 days up again. You probably need at least two at 60mg.

[Starseed56 in reply to Brightness14]

Thanks @Brightness 14 for confirming that as medichecks are saying my TSH being suppressed indicates I’m hyper and it couldn’t be further from the truth!! I thought I would up my pm dose from 30 to 45 and if that feels ok up again to 60 if I don’t feel an improvement. I am a bit concerned the doctor I pay to consult May say the same as she’s very result focussed. If she does I guess it will be time to part company and consult direct with Roseway.

[Brightness14 in reply to Starseed56]

That's a good idea, Roseway. After my thyroid was removed my professor surgeon sent me home with a letter, which I still have, stating my TSH was always to be suppressed.

If using any type of T3 which is in Erfa your TSH will be very low anyway. Mine is suppressed and I am fine 8 years on and 77 years old.

I self treat most Endos know nothing about the thyroid, it's very sad. Good Luck.

[Starseed56 in reply to Brightness14]

bless you Brightness i still have so much to learn and this forum is my go to now! I didn’t know that about TSH and T3 so that’s helpful! I’m 10 years your junior but feel old at the moment whilst trying to sort this out. Your story is encouraging. 🤗💜

[weenana]

I’m afraid I can’t help as I only get to see a nurse once a year for a blood test. The blood test doesn’t do T3 only cholesterol and TSH even though I’ve asked for other tests. Don’t know what Erfa is as never heard of it, I’ve been on 100 mgs levothyroxine forever and keep getting told it’s fine. Just wish I was. Never been refered to an Endo.

[Starseed56 in reply to weenana]

I was in that same situation til I took control of it all earlier in the summer. Erfa is natural desiccated thyroxine which is what people used to take before the lab made meds took over… it’s more natural and contains T3 and T4. Maybe it’s time to get more demanding with your gp or see someone privately? Like you I was on Levo for 22 years and was told it’s fine, clearly it wasn’t!