Very confusing blood results, hashi's swing?

[turquoisea7]

Hallo, may I ask please for helpful or reassuring comments or advice? APOLOGIES in advance for long post but am confused & want to include relevant info for full picture.

My last bloods were done a month ago after 4 weeks on 75mcg.

This timing was my GP's choice, as I had been so ill on 50mcg (I know everything here says 6 weeks).

I posted those results a few weeks ago for comment, they were reviewed. They were:

Serum TSH 1.69 (0.35 - 5.50)

Serum FT4 15.1 (10.5 - 21.00)

Serum FT3 4.9 (3.50 - 6.50)

I was still highly symptomatic. GP said raise to 100mcg & retest in 4 weeks; she has never heard of anyone having the near-constant fasciculations I'm experiencing & felt I was on too low a dose. (I'm 11st 7lbs).

I don't feel well on increase, so I crept up to 100mcg slowly over 10 days. Tried to ring GP to ask about putting next bloods back, as I had only been on 100mcg for just over 2 weeks. She has left the surgery. Wasn't sure whether to cancel, but I kept the appointment on Tuesday & asked the nurse, probably pointlessly - is this OK? She said we'll do it as that's what the GP wanted. I had worried at this point I may have been having a slight hashi's swing, my throat had been swollen for a few days and then for a few nights my sleep was very disturbed, although that could have just been anxiety over the test. (I do have occasional few-days swings). After that, Tues, Weds & Thurs I had just begun to feel well, the fasciculations had retreated to just pins & needles, I had more energy, had been awake all day and slept better, actually had 3 whole days of normal life! Felt so happy and optimistic that I was 'getting there'. Then blood results yesterday (Friday):

Serum TSH 0.06 mU/l (0.35-5.50) abnormal

Serum Free T4 20.8 (10.5-21) (no T3 done)

I realise these are probably what a lot of people are aiming at, especially as I felt so well. I realise GP will not like 'abnormal' TSH. However, these results felt pretty darn anomalous 4 weeks after last test. I have had NO hyper symptoms other than the slightly disturbed sleep for a few days, but that is completely normal for me. No raised heart rate, no shakes, nothing worrying, just felt well at last. But I saw these bloods and thought - hang on - was this/is this a hashi's swing, or have I increased dose WAY too fast and am now in danger if I keep taking 100mcg? Without a crystal ball I don't know whether I was heading for a disaster or just hadn't settled on the dose.

Yesterday I cut down to 87.5mcg, today 75mcg, just on two day's reduction all hypo symptoms have come back and today I feel appalling.

Any advice please? Does this look like a hashi's swing? Or just testing done too soon before 100mcg had settled? Should I retest privately to check levels before next NHS test rather than risk prescrip reduction? Reduce to 87.5mcg for 6 weeks and retest? I'm very loathe to reduce having had 3 days of well at long last and now feeling ill again, but don't know what else to do.

Have an appointment to see new GP in 4 weeks, am of course terrified he will reduce my 100mcg prescrip based on this test. Feel I probably need to turn in a 'more acceptable' test before I risk seeing him or asking for a repeat prescrip?

(all tests done per protocol, all questions about vitamins have been addressed in previous posts, same brand of levo since 50mcg).

THANK YOU to anyone who has actually read all this or has time to comment.

[SeasideSusie Remembering]

turquoisea7

Or just testing done too soon before 100mcg had settled?

In my opinion, this. I would wait 8 weeks. Personally I can still feel a difference at 10 weeks.

If it was a Hashi's swing I think your FT4 would be a lot higher.

Yesterday I cut down to 87.5mcg, today 75mcg, just on two day's reduction all hypo symptoms have come back and today I feel appalling.

I would go back to 87.5mcg, test after 8 weeks and see where your levels are and how you feel.

Have an appointment to see new GP in 4 weeks

Have you got enough Levo to cancel this appointment (just give a reasonable excuse like you're away at that time and would like one for when you get back) and reschedule for at least, preferably 8 weeks.

At next appointment with new results, if GP doesn't like your low TSH and wants to reduce your dose then refuse unless TSh, FT4 and FT3 are all done at the same time. If necessary do this yourself and use Monitor My Health which is an NHS lab so hopefully acceptable to your GP.

[turquoisea7 in reply to SeasideSusie]

Brilliant thank you so very much for your time and attention with this, I really appreciate it. Very comforting, which is what I needed, not to be cutting myself down to small doses out of fear. Excellent advice about insisting on all 3 levels being done before any reduction, I wouldn't have thought of that, thank you.

So do you reckon, safest bet after 87.5mcg for 8 weeks is to do MMH private test, and then do NHS one to keep them happy when I know I'm hitting the right spot for the GP?

(Not sure if I have got enough Levo to go 8 weeks, I have definitely got enough to cancel the 4 weeks appointment. Sticking point may be when I request repeat prescrip but again I could argue.)

[SeasideSusie Remembering in reply to turquoisea7]

So do you reckon, safest bet after 87.5mcg for 8 weeks is to do MMH private test, and then do NHS one to keep them happy when I know I'm hitting the right spot for the GP?

Could be. Try and do the MMH test as close to when NHS test is done. The NHS should be back the next day. My latest MMH test (done on Monday this week, sent Special Delivery Guaranteed Next Day by 1pm) arrived at the lab 7.30am on Tuesday and I had my results sent through at 5pm on Tuesday although often it takes an extra day. No guarantee that your GP will accept MMH results but at least you can argue that it's an NHS lab so what's wrong with it. Only if FT3 is over range are you overmedicated. TSH has very little role, if any, to play once on thyroid hormone replacement, unfortunately doctors don't seem to know this.

It's often the case the NHS lab wont do FT3 test even when GP requests it, the lab makes the decision based on the other tests. The hospital lab which does my GP tests usually does FT4 and FT3 for me because my TSH is always suppressed, but posts here illustrate this isn't the case for everyone.

[turquoisea7 in reply to SeasideSusie]

Yes, I will do testing all the same. Very good point that only if FT3 is over range am I overmedicated; and as we don't know from this test, arguable point. I may not bother trying to argue MMH results with them next time but just do another NHS one to avoid all the palarva with repeat prescrips or god forbid, actually needing to go up above 100 in the future - they will probably have a wobbly if I don't have something acceptable on record.

Those 3 days of feeling like a human again were amazing. I just hope that I can get to those levels 'for real' at some point and then keep them there, that would be actually living again.