New diagnosis of underactive thyroid: Hi everyone... - Thyroid UK

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New diagnosis of underactive thyroid

Gmanfooty
Gmanfooty
11 Replies

Hi everyone I,had a blood test a few weeks ago after being unwell for a few months with unexplained tiredness and aches and pains, had an appointment with gp on Tues and asked why I hadn't picked up my prescription for levothyroxine which had apparently been sent to pharmacy nearly 2 weeks ago! Was then told that my thyroid levels were low and that I needed to take this med for 6-8weeks then have blood redone to check levels. I was supposed to have been contacted by the surgery about all this which never happened. Didn't get to ask the gp much due to shock of it all! Ive had a mild headache on and off since starting drug , and was just wondering how long it takes for symptoms to improve and if there was any good advice on lifestyle etc I used to be really active 6mnths ago and am now struggling to function normally. Apologies if this has all been covered before!

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SeasideSusie
SeasideSusieAdministrator

Ggg1976

asked why I hadn't picked up my prescription for levothyroxine which had apparently been sent to pharmacy nearly 2 weeks ago! ................ I was supposed to have been contacted by the surgery about all this which never happened.

I hope your GP had the grace to apologise that you were not contacted about the prescription waiting for you and that steps have been put in place so this doesn't happen again to yourself or others.

Was then told that my thyroid levels were low and that I needed to take this med for 6-8weeks then have blood redone to check levels.

That's correct. Normal protocol after starting Levo is to retest in 6 weeks' time, increase dose by 25mcg, retest 6-8 weeks later, increase dose by 25mcg again, and repeat until your levels are where they need to be for you to feel well.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well.

Always ask at the reception desk for a print out of your results every time you have any blood tests. It's our legal right in the UK to have a copy of our test results. Keep a record - spreadsheet or otherwise - and this will be invaluable in the future. Make a note of

Date > Test name > Result > Reference Range > Dose of Levo > Notes on how you feel > Any change in dose due to this result

For example:

11/07/19 - TSH: 5.7 (Range 0.2-4.2) - 50mcg Levo - Fatigue, sleeping to excess, dry skin - Dose raised to 75mcg, retest in 6 weeks.

22/08/19 - TSH: 3.5 (0.2-4.2) - 75mcg Levo - Still tired but no longer sleeping to excess, skin still dry - Dose raised to 100mcg, retest in 6 weeks.

This way you can monitor your condition and know where you need your levels to alleviate your symptoms and what dose of Levo achieves that. Very useful if your GP wants to lower your dose and you feel that will be detrimental to how you feel.

Ive had a mild headache on and off since starting drug

Levo is not a drug, it's a hormone replacement, replacing the hormone thyroxine which your own thyroid no longer makes enough of. Headaches can be a side effect of Levo - have you read the Patient Information Leaflet?

What brand of Levo are you taking and what dose?

Do you have a copy of your test results which gave you the diagnosis of hypothyroidism?

Were thyroid antibodies checked - Thyroid Peroxidase and Thyroglobulin?

just wondering how long it takes for symptoms to improve

Depending on how unwell you were at diagnosis and how long you'd been like that, it can take quite some time to feel well, sometimes it can take months. Some improvement can be felt by some people fairly quickly but it takes up to 6 weeks for Levo to be fully absorbed, which is why retesting is done to check levels after 6-8 weeks. Patience is needed where hypothyroidism is concerned :)

if there was any good advice on lifestyle etc I used to be really active 6mnths ago and am now struggling to function normally.

For now take it easy. Eat a good, balanced diet. Exercise is not advised until you feel well, it depletes the body of the active hormone T3. Levo is T4 and your body has to convert some of the T4 into T3 and it's T3 that is needed by every cell in the body.

Here's some general advice given here:

Take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours. It doesn't matter when you take your Levo, morning, bedtime, middle of the night when you need a bathroom trip, but be consistent.

When doing thyroid tests, we advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

It's important to have optimal nutrient levels for thyroid hormone to work properly, it would be a good idea to ask your GP to test

Vit D

B12

Folate

Ferritin

and post results on the forum for comment.

Any other questions, feel free to ask, members are happy to help.

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Gmanfooty

Thank you so much for taking the time to give such an in depth response, will take all advice on board , my gp did apologise but was still not great knowing I could have been 2 weeks into treatment.

Again thank you

Reply
Treepie
Treepie
in reply to Gmanfooty

To add to the above advice re Medichecks ,also stop B12 for 7 days if having their B12 test .

Also suggest you have a look at Thyroid UK site for more information.

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SeasideSusie
SeasideSusieAdministrator
in reply to Treepie

also stop B12 for 7 days if having their B12 test .

I don't understand why they say that and I think they've got mixed up.

To get a baseline for B12 we have to be off a B12 supplement for 4-5 months so stopping it for 7 days wont make any difference.

However, a few months ago one of our members contacted Medichecks about Biotin. They confirmed they used Biotin in the testing procedure and advised that Biotin supplements should be left off for a week prior to testing.

healthunlocked.com/thyroidu...

So I think they may be giving out the wrong information.

1 like
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Treepie

They say” Thyroid Check Ultra: Active B12 levels can be affected by use of vitamin B12 supplements.If you are taking an oral supplement then we recommend not taking it for one week prior to the test to ensure an accurate measure of your B12 levels.If vitamin B13 is being prescribed to you by your doctor then you should discuss with them how long to omit B13 supplements for.”

I cannot do without B12 for months.

As I replied to you before there is no reference to biotin. But then there was no reference to the 6 months to have the test which should now change as a result of another forum members efforts.

Think next time it will be Blue Horizon!

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Gmanfooty

Hi just managed to see gp today who has advised no treatment for low b12 until my 6wk blood test is due also managed to get them to add antibodies test and thyroid peroxidase to my bloods, I asked about supplements and she said I could try but they may not be absorbed and may alter the results at my next bloods, is it worth me trying a supplement? Someone suggested a sublingual b12, I did try to push for injections but they wouldn't have it want to wait and see what thyroid is doing in 5-6 weeks. Any advice appreciated

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SeasideSusie
SeasideSusieAdministrator
in reply to Gmanfooty

just managed to see gp today who has advised no treatment for low b12 until my 6wk blood test is due

Well I don't understand why, with a B12 level below range at 187ng/L (197-771ng/L) then your GP is being negligent. There is no need to wait, investigation can start now as this is not connected to your thyroid function test. Did you check the list of signs/symptoms of B12 deficiency? Do you have any? If so, have you discussed them with your GP?

I asked about supplements and she said I could try but they may not be absorbed and may alter the results at my next bloods, is it worth me trying a supplement? Someone suggested a sublingual b12,

No, absolutely not. Supplement now and you'll skew results of the test that you need. You have a seriously low B12 level, possibly Pernicious Anaemia and may need B12 injections. Your GP is very wrong to leave this, there is no benefit at all in leaving it until you have your next thyroid function tests. Can you see another doctor?

You might want to pop over to the PA forum here on HealthUnlocked who may be able to help further

healthunlocked.com/pasoc

1 like
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Gmanfooty

Yes I did discuss symptoms with gp the lead Dr at surgery has left notes on my file about b12 to be checked at next bloods in 5 weeks also, the Dr I saw today agreed with this as well , not sure what to do now 5weeks is a long time to wait!

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SeasideSusie
SeasideSusieAdministrator
in reply to Gmanfooty

They may have some suggestions for you on the PA forum.

Reply
Gmanfooty

Yes I've just posted there thanks for all your help much appreciated

Reply
humanbean

Just wanted to add to all the good advice you've had...

If you ever get a test for iron and/or ferritin (iron stores), make sure that you aren't taking any pills or supplements that contain iron for 5 - 7 days before testing. Iron-related testing must always be done as a first-thing-in-the-morning, fasting test too, just like thyroid.

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