Two good appointments with GP in a row! Plus opinions on blood results, plz.

[Achilles_Pain]

Just had my second appt in a row where the GP said my symptoms were more important than the numbers on my blood test results. Two GPs, same practise, so things're looking up.

My latest blood results from Tuesday 21st, after 1 week taking 100 mcg/day, the week before 100 six days and 75 one day, the fortnight before 100 five days and 75 two days (I've been increasing slowly as my symptoms increased). Symptoms finally reducing this week, at last. Hopefully they'll eventually go completely this time?

TSH 0.98 (0.30 - 5.00)

FT3 5.8 (2.50 - 5.50(

FT4 16.6 (11.50 - 22.70)

Folate 10.9 (3.00 - 19.00)

TSH in October 1.40, same range.

My main query is the FT3 being slightly over range.

All the usual symptoms that have been plaguing me for 25+ years, plus for only the second time ever, googly eyes. By which I mean they feel under pressure, like they're about to pop out of my head. Last time they were like this I wasn't taking any meds (previous GP had declared me cured and stopped prescribing levo) and it turned into double vision for three weeks. No double vision this time, thankfully.

GP is happy with the figures but asked me to keep a symptom diary just in case there's something else being masked by thyroid issues, and to book another blood test in 8 weeks.

Still can't see results on myGP or PatientOnline. Reception staff can't understand why as everything looks to be set up correctly. Going back on Monday when office manager may be able to help. It worked fine before two practises merged and I had to reregister for online access.

[SlowDragon Administrator]

Absolutely essential to test vitamin D, folate, ferritin and B12 at least every 6 months

What vitamin supplements do you take?

When were these last tested ?

Add most recent results and ranges if you have any

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

[Achilles_Pain in reply to SlowDragon]

Thanks for replying. Yes, I always test 1st thing, no food or meds before. One of the GPs I saw over the last couple of years (I can't remember which one) told me to always do it that way - she even wrote it on the test request as "fasting" (the receptionist commented she'd never seen that for Thyroid tests before)

Vit results (Medichecks, 22/07/19)

B12 - 87.9 (37.5 - 188), never tested by NHS

Ferritin - 128 (30 - 400), no NHS since March '16

Folate - 11.4 (3.89 - 26.8), last NHS this week, 10.9 (3 - 19)

D - 92.7 (50 - 175), no NHS since Apr '18

Can't stand liver (had it twice, been violently ill twice!) but eat pate every couple of weeks, take B Complex, C&E, D3 (all Holland and Barrett), fish two or three times a week (tuna, sardine, mackerel plus occasionally pilchards), nuts (various), bananas and/or tangerines pretty much every day. Went gluten free 2 years ago (almost, but not quite, 100%). When I'm not too ill I'm a runner so spend a lot of time out doors in shorts and a vest (even in the rain and snow).

My prescription was 75 mcg but about 2 years ago started taking 100mcg once a week (tried twice but it was too much). This sufficed until about Sept '18 when symptoms started to return. Went to doctor's but the GP I saw said I was talking rubbish, you don't get any of those symptoms from an under active thyroid (maybe I should have directed him to the NHS website to prove him wrong?) so I took no notice of what he said and went up to 100 twice a week. When symptoms didn't start to go away from Nov '18 increased to three times a week. Upped to four times a week in December '19 and made appt with GP (1st available 24th Jan '20), upped to five times a week in early Jan when eyes started to go funny like they had in 2015 which ended up with me having double vision - not happened this time, think the increase has cut it off at the pass - increased again to six times a week a fortnight ago and after seeing GP last Tuesday was told to increase to 100 every day..... to summarise....

From Dec '12 on no meds after prev GP declared I was cured and stopped prescribing levo (TSH had been steadily climbing and had just reached 5.65 at the time of his declaration, though I didn't know it at the time)

75 mcg every day from Oct '15 (new GP put me back on levo)

75 x 6, 100 x 1 from Jan '18ish

75 x 5, 100 x 2 from Oct '18

75 x 4, 100 x 3 from Nov '18

75 x 3, 100 x 4 from Dec '18

75 x 2, 100 x 5 from Jan '18

75 x 1, 100 x 6 from 14th Jan

100 x 7 from 21st Jan

In the last week or so my symptoms have finally started to subside, the pain is reducing, I'm sleeping better, the eyes don't feel quite so strange and I just generally feel less bleurghh.

[fibrolinda]

You really need to stay on a dose for six to eight weeks, then test. It takes that long to convert so you can see if you are on the right dose.😊

[Achilles_Pain in reply to fibrolinda]

Thanks, but whenever I've had a change in dose it's usually (not always) made a difference within a few days. Maybe I react quickly, or it's just psychosomatic? Or I've been so close to the tipping point it hasn't taken much of a change? But the GP said exactly the same and wants me to get tested gain in mid to late March.

[SlowDragon Administrator in reply to Achilles_Pain]

Yes...at this stage a test so soon after dose increase doesn’t tell you much

Your vitamin levels are great. You’re obviously on the case about good diet and supplements

See how symptoms go ...

Getting retested after 8 -12 weeks on 100mcg everyday

It can take months for body to settle after dose change

Always get same brand of levothyroxine at each prescription for same reason

Different brands are not bio equivalent.....100mcg of one brand will give slightly different dose to a different brand

[Achilles_Pain in reply to SlowDragon]

Yes, Wockhardt and Teva just result in a swift return of all symptoms, it's on the system at Boots not to dispense them to me (though I still check).

[fibrolinda in reply to Achilles_Pain]

Oh I know what you mean but fact is the T4 takes 6-8 weeks to convert to t3 in the body. You could end up yo yoing your dose of completely missing your sweet spot... Slowly is really the best way... Hard to be patient I know 😆

[Achilles_Pain in reply to fibrolinda]

Hence me slowly increasing by adding 25 mcg one day a week, then two, then three etc to take my prescription dose from 75 to 100, though based on the last few months I don't think I was increasing fast enough.

My niece has just been diagnosed (TSH 400+ - doctor didn't know how she was still alive) and put on 125 (I think she was on 75 for a month before being upped to 125?)

[SlowDragon Administrator in reply to Achilles_Pain]

Increasingly modern thinking is to get patients on high dose ASAP.......but GP’s perhaps have rarely read the guidelines

New NICE guidelines

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.

But with hashimoto’s, we have very often been hypothyroid a long time, then starting more cautiously is often necessary.

But if left on far too small a dose levothyroxine for too long it can be extremely difficult to increase dose....again something we see extremely often on here