Newbie!: Hi all I'm new to the group. I have been... - Thyroid UK

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Newbie!

Shanna887 profile image
10 Replies

Hi all I'm new to the group.

I have been getting some really odd symptoms lately - twitching in facial muscles, stomach getting upset easily, tiredness, yawning all the time, feeling cold, puffy legs and ankles, periods very heavy, dry skin. I increased to 75mcg levothyroxine from 50mcg today, not sure why these symptoms exist!

I was diagnosed with hypothyroidism in November 2017.

Advice appreciated!

JUL-2018 (50mcg)

TSH 2.78 (0.2 - 4.2)

FREE T4 15.4 (12 - 22)

FREE T3 3.5 (3.1 - 6.8)

FERRITIN 12 (30 - 400) IV iron given 2 weeks ago

FOLATE 3.7 (4.6 - 18.7)

VITAMIN B12 63 (190 - 900)

VITAMIN D 42.2 (25 - 50 deficiency) prescribed 800IU D3 in November 2015

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Shanna887
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shaws profile image
shawsAdministrator

Welcome to our forum,

If you were diagnosed in November '17 and have been on 50mcg all that time, it is absolutely ridiculous. Increases of 25mcg of levothyroxine should be every six weeks after a blood test and the aim is a TSH of 1 or below. Your T3 is dire and should be nearer the upper part of the range but cannot do this as your dose is too low. Unfortunately many doctors believe 'somewhere' in range is five - even up to 5 but that's wrong.

T4 - levothyroxine - is an inactive hormone and it has to convert to T3 which is the only Active Thyroid Hormone which is needed in our millions of T3 receptor cells. T3 drives our whole metabolism from head to toe and heart/brain needs the most.

We need an optimum dose of T3 to enable our body to function properly.

The aim is a TSH of 1 or lower - FT4 could be higher and definitely FT3 could be nearer 6. You need an increase in dose.

You will probably realise the importance of educating ourselves so we can lead a normal/healthy life. We have to read/learn and ask questions in order to do so as doctors and endocrinologists don't know much more than TSH and T4.

All blood tests for thyroid hormones have to be at the very earliest and fasting (TSH is reduced if we eat before test). It also has to be a fasting one (you can drink water) but allow a 24 hour gap between last dose of levo and the test and take it afterwards.

The reason being this helps TSH to be at its highest as doctors are too quick to lower our dose if TSH is too low! The fact is we need it to be low, i.e. 1 or below - not somewhere int he range.

Always get a print-out of your results with the ranges for your own records and post if you have a query.

We have to educate ourselves if we want a normal healthy life.

Doctors should also test B12, Vit D, iron, ferritin and folate - everything has to be optimal.

Shanna887 profile image
Shanna887 in reply toshaws

Thank you Shaws!

My dose wasn't changed from 25mcg for a few months as my levels mysteriously went back to normal.

It was only on my insistence did I get a dose increase.

I will add vitamins now.

shaws profile image
shawsAdministrator in reply toShanna887

What doctors state as 'normal' may not be normal for us who have been given levothyroxine. Many GPs believe that once our ranges hit 'normal' their job is done. No it is not.

The most important and informative tests are Free T4 and Free T3 and I shall give you a link which may be helpful:-

thyroiduk.org.uk/tuk/testin...

shaws profile image
shawsAdministrator

thyroiduk.org.uk/tuk/about_...

Shanna887 profile image
Shanna887

So my bloods were all done early morning and fasting and leaving off Levothyroxine for 24 hours and my thyroid levels went back into range from overt hypothyroidism?

greygoose profile image
greygoose in reply toShanna887

Have you had your antibodies tested?

I think your new symptoms are probably due to your rediculously low nutrients. They are all too low, but your B12 is dangerously so. You need to be tested for Pernicious Anemia.

Shanna887 profile image
Shanna887 in reply togreygoose

I had thyroid autoantibodies tested, are they the same? I sent for a private blood test including antibodies.

Thyroid autoantibodies 1710 (<34)

greygoose profile image
greygoose in reply toShanna887

Yes, the same. And your antibodies are very high, so you have Hashi's, and that's why your levels jump around. :)

Shanna887 profile image
Shanna887 in reply togreygoose

Thanks

shaws profile image
shawsAdministrator

Copy from above:-

TSH 2.78 (0.2 - 4.2) - too high - should be 1 or lower

FREE T4 15.4 (12 - 22) - too low should be nearer 20

FREE T3 3.5 (3.1 - 6.8) too low - should be nearer 6.

FERRITIN 12 (30 - 400) IV iron given 2 weeks ago

FOLATE 3.7 (4.6 - 18.7) too low - a member will respond.

VITAMIN B12 63 (190 - 900) ask for intrinsic factor to be checked to exclude PERNICIOUS ANAEMIA.

VITAMIN D 42.2 (25 - 50 deficiency)

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