Specific endocrinologist experience: hi, I had a... - Thyroid UK

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Specific endocrinologist experience

ConfusedH profile image
20 Replies

hi, I had a consultation with [endocrinologist name redacted] and have never felt so dismissed. I was referred to an Endo for low FT4 levels my TSH is normal but low side of normal. My fatigue is ridiculous and wake up feeling shattered. I struggle getting through a day and find I need to sleep. I have gained weight and have a really muzzy head as well as other symptoms. He told me I’m fine and there is nothing there….

has anyone else experienced this?

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ConfusedH profile image
ConfusedH
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20 Replies
helvella profile image
helvellaAdministrator

Your experience has been reported far too many times.

Have you got any more information, a brief history, blood test results, etc., that you would share in order that members can try to make some suggestions?

You can add something to your profile - then it will always be available.

ConfusedH profile image
ConfusedH in reply tohelvella

My FT4 is 10.9 pmol which is now lower than November my TSH is no 0.935 which is now lower than it was in April this year.

I am really struggling with every day life

helvella profile image
helvellaAdministrator in reply toConfusedH

Do you have a reference interval (range) for that FT4? (The ranges vary hugely from lab to lab.)

A TSH of 0.935 could be OK - but not if FT4 is very low.

I assume no FT3 test? Nor antibodies? Nor iron (ferritin, etc.)? Nor B12?

ConfusedH profile image
ConfusedH in reply tohelvella

The range is 12-22

helvella profile image
helvellaAdministrator in reply toConfusedH

In which case 10.9 is appallingly low.

We'd expect a result of at least 17, quite possibly 19 or more when treated, to feel OK.

If your TSH is failing to rise (we'd expect a much higher TSH in someone with such a low FT4), that suggests you have an issue that is preventing the TSH from rising. It doesn't mean that anyone should IGNORE the low FT4!

ConfusedH profile image
ConfusedH in reply tohelvella

Also my serum folate is low and I’m now on medication but he said it’s fine too

helvella profile image
helvellaAdministrator in reply toConfusedH

Low folate is bad. But what is your B12?

Trouble is, taking folate when you have low B12 is a bad path. The folate resolves some aspects of B12 deficiency but that helps to mask that you have a B12 deficiency at all.

Are you vegetarian or vegan? If you are either, do you take any B12 supplementation at all?

ConfusedH profile image
ConfusedH in reply tohelvella

No not a vegan my serum folate is 2.6 and in the results states it should be above 3

helvella profile image
helvellaAdministrator in reply toConfusedH

And 3 is low.

You are unlikely to suffer obvious signs of folate deficiency at 3, but many would like to see their folate higher than that, maybe something like 7 or more.

RedApple profile image
RedAppleAdministrator

ConfusedH, To make it easier for members to understand your situation, can you please summarise the circumstances that lead to your GP referring you to an endocrinologist.

A list of all your thyroid test results, with their accompanying ranges, and the dates and times the blood was drawn, will help members to help you.

Sparklingsunshine profile image
Sparklingsunshine

Was this a private Endo or an NHS referral, if your FT4 is only 10.9 and the range starts at 12 then it suggests woeful undermedication. Sounds like this Endo doesnt know his arse from his elbow.

ConfusedH profile image
ConfusedH

I could have gone NHS but I have private health insurance so went private

jimh111 profile image
jimh111

I think this endocrinologist is a diabetes person so it looks like you picked the wrong doctor. A low fT4 with a normal TSH indicates central hypothyroidism. Did they measure your fT3? I suspect your fT3 will be low normal.

ConfusedH profile image
ConfusedH

should I get another opinion or is it likely I will get the same response?

Jaydee1507 profile image
Jaydee1507Administrator in reply toConfusedH

When you make a reply you need to use the button under the response that you are replying to, otherwise that person doesnt get a notification of your reply.

You could keep pushing on with your GP. Learn a little from reading this group and challenge your GP. Keep going back until you get what you need, try different GPs.

What time of day are you having your thyroid blood tests? It makes a difference as TSH runs on a circadian rhythm so is higher first thing in the morning before 9am and lower later in the day.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

I suspect you have other low vitamin levels other than folate. Have you also had B12, ferritin & D3 tested and what were the results? If they haven't been tested then ask GP or buy a private test. Post results in a new post.

Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

ConfusedH profile image
ConfusedH in reply toJaydee1507

Thank you so much for this

HealthStarDust profile image
HealthStarDust

Yep. Would you mind messaging me privately in case it was the same person we saw?

ConfusedH profile image
ConfusedH in reply toHealthStarDust

how do I do that

helvella profile image
helvellaAdministrator in reply toConfusedH

Click on the Chat button. Then click on the blue New button. Type the member's name and you should see what to do.

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ConfusedH profile image
ConfusedH

thank you for everyone’s responses you have no idea how much you have helped me. I have another opinion booked in

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