Good morning, finally saying hello

[Beads]

Hello, long time lurker, first time poster, except for a couple of replies to posts.

Brief history before I get to my questions. Grab a cuppa, having typed it it isn't brief!

This time last year I was turned away from blood donation due to low Hb, told to go see doc. Which I did, but not before munching my way through some iron tablets. Iron levels OK, but TSH 'slightly above' limits, T4 'slightly below' limits; come back in 3 months for re-test. 3 months later (I'd found you guys by then), different doctor who did TSH and antibodies and, despite me feeling REALLY rough by then, said there wasn't much he could do if TSH was over but antibodies were negative (before the test). I logged onto my online results, TSH was over limits, antibodies was 146; but no limits for the antibody test. I trawled here looking for what the limits were, came up with loads of different numbers and decided it was either 34 or 150; 34 obviously positive and I should get a phone call from the docs, 150 just negative. So I waited for a phone call, and waited, and waited.

No phone call. I decided I must be in that limbo of negative antibodies and high TSH that they don't want to do anything for. So I found some unregulated, "definitely doesn't contain hormone", dried thyroid extract online and very cautiously started treating myself. Felt better for a month or two, then started feeling worse. Eventually gave up the dried thyroid extract as 'not working'. I had another doc appointment booked but the surgery cancelled it and I never got round to re-booking.

End of November and I found a post on here that said <34 was the limit for the antibody test, so I ordered a medicheck kit to confirm, started back on the thyroid extract tablets (and some vitamin D), got rid of the gluten in my diet (which helped me not pile on the pounds over Christmas), booked an appointment with the doc and finally after his blood test (for which I stopped the thyroid extract again for 3 weeks and felt like death) I started 50µg levo back in the middle of February.

6 weeks later and we're in lockdown, a phone appointment.....

Him: How are you feeling?

Me: Better than I was but not back to normal, I'm not going to be running a marathon any time soon

Him: Well it sounds like you're on the right dose, continue with the 50µg. I'll put a form for a blood test for after lockdown, I'll date it 20th April

Me: OK (forgetting everything else I wanted to say)

So, anyway, medichecks had an offer on the other week and I wanted to know what my vitamin levels were so went for it. Results for both last December and this week's tests are in the photo above. Still not made it up to the surgery as I still don't want to go to the hosp for the blood test.

So questions:

Vitamin D is better, I'll carry on sitting in the sun when I can and having a squirt of the spray when I remember.

Folate and B12 have dropped significantly and slightly, I think this is due to getting rid of gluten from my diet, mainly in that I used to be a marmite-on-toast-freak and neither marmite nor toast are gluten free, so other than supplements how can I get my levels up again? If I need to supplement please advise.

TSH is now 'within range' though still on the high side. This (May 2020) is the first T4 test I've had that's within range, although it's still only just within range. So going by both of these and one of the things that I meant to mention to the doc but didn't (that as soon as I started taking the levo I stopped having to get up in the middle of the night for a wee) how likely is it that maybe my pituitary is struggling a bit? And how do I phrase it to the doc (in an email, I hate phone appointments) to get him to add T4 to the blood test (and then dose from that level/how I feel rather than TSH) as I'm pretty certain that he's only put TSH on it as that seems to be standard practice. I'm also convinced that if I just get tested for TSH it will come back as 'normal/within limits' and I'll be stuck here forever.

Yes, except for the very first blood test (the one that was slightly high TSH, slightly low T4) all my tests have been done first thing, fasting, etc.

And no, I wasn't being facetious when I said I'd not be running a marathon anytime soon, I'm an ultra runner, though in the last year or so 3 miles has seemed way out of my league.

[SlowDragon Administrator]

Well GP clearly knows nothing about how to read a thyroid test result for someone on levothyroxine

Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

See different GP and request 25mcg dose increase in levothyroxine

[SlowDragon Administrator]

Are you still strictly gluten free?

TPO antibodies are dropping slowly.

[Beads in reply to SlowDragon]

Yes as regards to gluten in my diet, no as regards to potential contamination where I have no control, i.e. we've not had fish and chips or chinese takeaway since, but have had indian takeaway where I've avoided the breads etc but not the fact that the other items may have been cooked in the same oil as something containing gluten. Though not in the last 6 weeks.

I've got the rest of the household cutting the cheese on a different board to the one they're buttering their toast on, I prepare my food at the other end of the kitchen to the bread/toaster and on the rare occasions I want butter (for example on a baked potato) I use a fresh block from the fridge rather than go to the butter pot. All gluten free baking is done with ingredients that won't have the potential to be contaminated.

[SlowDragon Administrator in reply to Beads]

So that’s pretty much almost strictly gluten free

Take aways are always extremely tricky

[SlowDragon Administrator]

Suggest you attach copies of both Medichecks results to email

Point out that Ft4 remains right at bottom of range and that you are ready for next dose increase

Also ....guidelines by weight might help push for dose increase

Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

BMJ also clear on dose required

bmj.com/content/368/j

Post re how to push for dose increase in levothyroxine

healthunlocked.com/thyroidu....

[Beads in reply to SlowDragon]

Thank you.

[Beads]

Sorry, another question, I thought of it earlier, then lost it, have remembered again.

Is this progressive? As in does the thyroid die off slowly, so we'll be OK on a set dose for a while as it's helping our thyroid, but then as it dies off the dose needs to increase until we get to the point where the thyroid is basically sitting there doing nothing and we've only got the synthetic stuff working for us?

[SlowDragon Administrator in reply to Beads]

It’s a mixture...if you had no levothyroxine at all TSH would remain high...and struggle to make some hormones

But slowly thyroid output would diminish over months/years regardless of how high TSH went as thyroid cels are broken down due to autoimmune attack

But as soon as we start on levothyroxine, the pituitary notices, TSH reduces as direct result, and your own thyroid takes a rest and your own thyroid output diminishes.

So dose needs to be slowly increased due to mixture of both these things

Levothyroxine doesn’t “top up” your thyroid output...but replaces it...hence almost everyone eventually needs full replacement dose

But unfortunately many GP’s are completely unaware and don’t read guidelines ....and leave thousands of patients languishing on 50mcg or 75mcg ...75mcg is often enough to lower TSH, but rarely enough to offer optimal Ft4 and most importantly optimal Ft3

Essential to regularly retest vitamin levels too

Wearing a Fitbit or equivalent to record low resting heart rate and activity levels can be helpful in persuading GP to continue to increase dose

[Beads in reply to SlowDragon]

That was one of the things I pointed out to the GP, and one of the things where I've seen an improvement. My resting heart rate is now (generally) in the low 50s, it occasionally goes down to the high 40s, but has only dipped under 40 once recently, it was quite regularly down there prior to starting on the tablets.