It's a constant battle with my GP!: In my... - Thyroid UK

Thyroid UK

137,799 members161,619 posts

It's a constant battle with my GP!

Ladysmith53 profile image
14 Replies

In my previous post i talked about the curt conversation with my GP regarding a dose increase, and she had agreed of just a 25mcg dose increase a week ( I didnt even think she would give me that!) But she did insist it would not be advised as there was a risk of being overmedicated, I told her I couldn't possibly get overmedicated as my ft3/ft4 levels weren't very high. I have just had another blood test and my ft3 has dropped again. These are my 3 tests from April, June and August.

My question is, am I not converting very well and am I needing T3 medication?

April:

TSH 2.2 (0.4 - 5.5)

Ft4 16.5 ( 11.0 - 26.0)

Ft3 3.9 (3.0 - 6.0)

June:

TSH 1.7 (0.4 - 5.5)

Ft4 18.3 (11.0 - 26.0)

Ft3 3.8 (3.0 - 6.0 )

August:

TSH 1.1 (0.4 - 5.5)

Ft4 19.6 ( 11.0 - 26.0)

Ft3 3.5 (3.0 - 6.0)

Vitamins in April:

B12 591 (190 - 910)

Vit D 147 .2

Ferritin 157 (10.0 - 291.0)

Folate 12.3 (3.9 - 26.8)

Written by
Ladysmith53 profile image
Ladysmith53
To view profiles and participate in discussions please or .
Read more about...
14 Replies
SlowDragon profile image
SlowDragonAdministrator

Ft4 is only 57% through range

So you have room for dose increase in levothyroxine

Presumably you did this test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?

Approx how much do you weigh in kilo

How much levothyroxine are you currently taking

guidelines on dose levothyroxine by weight

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...

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts

A) are you still on propranolol. If yes how much

Propranolol slows conversion and uptake of thyroid hormones

B) as you have Hashimoto’s are you on absolutely strictly gluten free diet and/or dairy free diet

If not get coeliac blood test done BEFORE considering trial on strictly gluten free diet

Ladysmith53 profile image
Ladysmith53 in reply to SlowDragon

Hi Slowdragon yes test done at 8am fasting, levo 24hrs before and stopping B12 a week before. I weaned off propranolol a few months ago.I currently take 100mcg 5 days and 75mcg 2 days. I am strictly gluten/dairy free and have slowly lost weight from 58k to just under 57k over the last 3 months. Not sure if it's to do with cutting out gluten and dairy 🤷‍♀️

SeasideSusie profile image
SeasideSusieRemembering in reply to Ladysmith53

Ladysmith53

stopping B12 a week before.

A few members have mentioned that they stop B12 before a thyroid test. There is no need to stop B12 and it's never been advised on the forum. I don't know where the confusion is coming from. Supplementing B12 does not affect thyroid tests. It's Biotin (B7) either as a stand alone supplement or included in a B Complex that needs to be stopped.

Ladysmith53 profile image
Ladysmith53 in reply to SeasideSusie

Can you recommend a b12 without biotin please?

SeasideSusie profile image
SeasideSusieRemembering in reply to Ladysmith53

Ladysmith53

A B12 supplement does not contain biotin (B7). It contains B12.

Are you confusing it with a B Complex which contains all the B vitamins?

Which supplement are you taking?

Ladysmith53 profile image
Ladysmith53 in reply to SeasideSusie

It's the thorne basic b complex... obviously I said the wrong supplement

SeasideSusie profile image
SeasideSusieRemembering in reply to Ladysmith53

So you leave off the B Complex for 3-7 days before the test.

Ladysmith53 profile image
Ladysmith53 in reply to SeasideSusie

Yes, that's what I did, are you suggesting i take a separate b supplement in that time that doesn't contain biotin?

humanbean profile image
humanbean in reply to SeasideSusie

I don't know where the confusion is coming from.

I did notice quite recently that Medichecks has put this in their Special Instructions section. I don't know how long it has said this :

Do not take vitamin B12 for two weeks prior to this test. If your B12 is prescribed ask your doctor whether you should stop before testing.

from this link :

medichecks.com/products/adv...

SeasideSusie profile image
SeasideSusieRemembering in reply to humanbean

I know HB and I contacted them about this some time ago. They started mentioning leaving off B12 at about the time the cautions about biotin came about.

This is what I wrote to them

There seems to be some confusion about stopping B vitamins before blood tests.

A few months ago one of our members contacted you about Biotin and blood tests, and she shared the information you supplied with other members, the salient points being:

they have confirmed that yes biotin can effect the thyroid test results.

The medical team have also added that because biotin is an ingredient used in many lab hormone test kits this can interfere with the measurement of thyroid hormones

It does this in an inconsistent way, causing falsely elevated results from some labs, and falsely low results from others. We recommend stopping biotin for one week prior to blood tests.

So when asked for advice, we always pass on this information and suggest that members leave off their B Complex/Biotin supplements for a week before any tests.

We now have some members telling us that when they receive their instructions (not sure which kit they are referring to), it says to leave B12 off for one week but there is no information about leaving off Biotin. I regularly do Thyroid Monitoring test with you and I haven't noticed anything in the instructions about leaving off Biotin.

It's our understanding that to get a baseline B12 to know what our bodies are holding on to, then B12 should be left off for about 4 months, so I'm unsure if leaving B12 off for a week has any benefit.

And this was their reply:

I have discussed your query with our medical director he has advised the below:

Biotin supplements.

Biotin can affect the results of any test which relies on antibodies to perform the measurement. It is wise to assume that any hormone or vitamin test will be affected, which means that the majority of our test panels can be affected by biotin supplements.

The issue with Biotin only affects people who take high dose biotin supplements. The manufacturers of the laboratory tests define this as 5000 mcg per day or more.

We are recommending people do not take high dose biotin supplements for 24 hours prior to having their blood drawn.

If they are taking high dose biotin for medical reasons (e.g. multiple sclerosis) then a shorter washout period of 8 hours can be used.

Vitamin B12 supplements.

The answer to this depends upon what they are wanting to assess.

To work out whether B12 supplements are meeting the body's requirements we recommend not taking supplements for one week prior to having their blood drawn.

If a customer wants to assess whether they have an underlying B12 deficiency then it can take months (and potentially up to two years) for levels to fall to their natural levels after stopping supplementation. In this instance we would not recommend.

I can also confirm this information will be displayed on our test instructions in the near future.

It hasn't helped that they contradict themselves. Firstly they say to leave off Biotin for one week, now they're saying 24 hours for high dose Biotin (>5,000mcg). The B12 warning is for the B12 test included in the Advanced Thyroid Test and they said leave off for one week and now they're saying 2 weeks.

humanbean profile image
humanbean in reply to SeasideSusie

Yes, it doesn't sound consistent at all!

SlowDragon profile image
SlowDragonAdministrator in reply to Ladysmith53

So dose by weight - you’re spot on

Good you stopped propranolol

Did you see improvements going gluten/dairy free ?

Your Ft3 is obviously far too low

Suggest you repeat test again in another 6-8 weeks

Assuming Ft3 remains low …….Likely to need addition of T3 prescribed alongside levothyroxine

Roughly where in U.K. are you

Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3 ...NHS and Private

tukadmin@thyroiduk.org

Ladysmith53 profile image
Ladysmith53 in reply to SlowDragon

Thanks Slowdragon, you did give me your advice on the propranolol, and definitely had improvement with avoiding gluten/dairy! I am in Chesterfield (Derbyshire) so I will email to get the list in case I need t3, and ask my GP for repeat bloods. Great advice thank you! 😊

You may also like...

Some advice before a battle with GP!

I have had over the last 5 years has shown high TSH, generally between 6 and 10, and always over the

It feels like I've gone backwards with my symptoms!

ny results: TSH 1.7 (0.4 - 5.5) T4 18.3 (11.0 - 26.0) 49% through range T3 3.8 (3.0 - 6.0) 27%...

Battling with GP for bloods

ferritin, folate, vit D and B12 in addition to the TSH be added. After a week of waiting I got a...

Why is my FT3 level getting lower on a constant dose of Levothyroxine?

Levothyroxine: TSH - <0.01 (0.27 - 4.20) FT4 - 16.00 (9.00 - 19.00) 70% of range FT3 - 5.00...

battling with virtual gp