Some progress - finally!

[luthien]

So, thanks again to all of you for perservering with me!

I've managed to push my GP surgery to have my thyroid blood test early Friday morning (8:25) which is great. I'll wait and see what's actually tested from the list you guys gave me; I mentioned it to them and they've been reluctant so only testing a few, hopefully; T4, Vitamin B12, folate and antibodies (TSH has to be requested for the lab to look at the others). Just to clarify my December test they only looked at TSH and "forgot" the others - hence this test.

In relation to my hypothyroidism we have been to see a fertility specialist yesterday; discuss next steps and all that. She has mentioned to do anything TSH needs to be in the reference range, I think hers is 2.2 to 5.5 (mine is 13.8). She has said the same as you; she doesn't understand why I need to hold off on levothyroxine until after the blood test and GP consultation if I now already have the prescription. Understandably she was annoyed that the GP surgery hadn't owned up to messing up and losing the prescription back in December and just sort out the repeat to put me on it asap, as I could have started medication then and would have seen a change by now so possibly treatment for fertility next steps could be considered.

The specialist has said go on the medication straight away, so first dose is today, and confirmed do not take a dose in the morning of the blood test (take it after) which makes sense. Basically if my GP surgery have any problems they are to contact her!

Thanks all of you for your help - I know it's early days as I'm only on 50ug. I'm guessing I'll need to push the GP to do a repeat test in 6 weeks? What would I need to be on do you think to bring it down to the reference range and keep it there?

I have the Thriva full Advanced Thyroid Profile one as a back up as it does all the tests possible. I have checked with Thriva - it's basically useable until the expiry date of the collection tubes, but they can issue new ones for free if I need it and if I keep the pack. My specialist says this test will be helpful as she and I can push the GP for further tests if needed.

I'm sure I'll have loads more questions.

[tattybogle]

Just one point , whilst i agree that you should be taking the Levo and it was unnecessary for GP to want a further blood test before starting levo.... If you take levo for a couple of days before this test on friday morning, the test won't be any use for telling them anything anyway .

It won't tell the you blood levels of T4/3 /TSH on 50 mcg as it's not been 6 weeks , and it wont tell them your blood levels on no meds either as it will have possibly lowered the TSH a bit, even after a couple of days on levo, and altered you fT4/3 , but not stabilised on 50mcg yet.

Sorry to confuse the issue just when you feel like you're getting somewhere.

[luthien in reply to tattybogle]

It may be that you've not read my previous posts - so apologies. The test in December was just for TSH, they "forgot" to test anything else. So the test I am pushing for which I am having on Friday is primarily for T4, Vitamin B12, folate and antibodies, to link it to Hashimotos. So yes there won't be any change in TSH but the aim is to look at the others they didn't test - it means they'll need to re request TSH anyway as that has to be done with T4 as part of their tests. Why the didn't do it the first time we'll never know. I will amend the above post

[tattybogle in reply to luthien]

Thanks , i did know about your 'previous'

Just wanted to make sure you know that the thyroid test on friday will have 'issues'

(The TSH MAY have been changed even by taking levo for 2 days)

The fT4 will not show your untreated hormone level any more if you take 2 days levo , and neither will it show your level on 50mcg as it's slightly too soon, so an fT4/3 or TSH test after 2 days of Levo is useless for any practical purpose , and you need to be aware of this depending on who wants this test and what they want it for (Sounds like they're not sure themselves !, bit of a shambles so far )

However the antibody test will be unaffected and is useful for confirming the cause , and the B12/Folate is good to do.

Fortunately it sounds like your specialist has an understanding of things even if GP has tied themselves in knots, so hopefully things should improve from now on.

[SlowDragon Administrator in reply to luthien]

Ft4 will immediately be affected by taking levothyroxine

TSH takes 6-8 weeks to respond to dose changes

[SlowDragon Administrator]

Likely to need several further increases in levothyroxine over coming months

But we typically have to start on 50mcg.....wait 6-8 weeks get bloods retested

Increase up by 25mcg....wait 6-8 weeks and repeat bloods

This continues until TSH is under 2.

Most people when adequately treated will have TSH well under one

Most important results are always Ft3 followed by Ft4

Aiming for Ft3 at least half way through range, and often Ft4 may be slightly higher to get Ft3 at required level

Levothyroxine is Ft4 and has to be converted in body into Ft3

For good conversion we need optimal vitamin levels

guidelines on dose levothyroxine by weight

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

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...