Cwetch: Just joined forum.Have been under active... - Thyroid UK

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Cwetch

Cwetch profile image
31 Replies

Just joined forum.Have been under active for 18years.Currently taking 50 and 75 on alternative days. Since last year.previously on 50 no problems Experienced last week of over active symptoms had to have ECG and blood test.Felt terrible.

Blood results are conflicting

TSH 12.5

T4. 14

Last year the same thing happened.

Took 6 blood tests to bring the levels down.

So confused now to take 25 daily till next blood test next week.

Felt better coming down to 25 because the Dr was going to put me up 75 daily.

Other bloods all within range.

The thing was different I was on antibiotics.Could this have caused it

Is it because of my age over 70 that this happening.

Appreciate any help

Thank you

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Cwetch
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31 Replies
helvella profile image
helvellaAdministrator

Do you know the reference intervals (ranges)? Especially for FT4. That varies so much that 14 could be near the bottom by one RI and the top by another.

But a TSH of 12.5 is definitely high. And I'd expect you to have a dose increase - not reduction.

Age does have an effect but we don't see massive changes just because someone has reached a particular age. Just very slow changes over many years - or maybe a bit faster if something else has changed.

Cwetch profile image
Cwetch in reply tohelvella

Thanks unsure how to read FT4 on my blood test

Cwetch profile image
Cwetch in reply toCwetch

Just says 14pmol/L range 9-19pmol/L Last year 13.2

helvella profile image
helvellaAdministrator in reply toCwetch

That is close to the middle of the range.

Most of us feel better with it higher in the range than that. Maybe 17 or so.

Also, has the manufacturer changed? Only one company makes 75. But there are a few for 50 and 25.

Cwetch profile image
Cwetch in reply tohelvella

I can't take Teva gives me stomach problems

helvella profile image
helvellaAdministrator in reply toCwetch

Me too!

MrPeaPaw profile image
MrPeaPaw in reply tohelvella

What's the problem incipient ? Teva seems to not suit so many. Why don't they change it?

helvella profile image
helvellaAdministrator in reply toMrPeaPaw

Maybe we need to look at it the other way round?

When New Formulation Teva was launched, it was the **ONLY** lactose-free levothyroxine tablet on the UK market.

Some people have found the product to be the best levothyroxine they have ever taken. For them.

Changing it from mannitol to lactose would have removed that option from many.

(Now we also have Aristo levothyroxine/Vencamil which is a second lactose-free formulation.)

The way I view it is that we need a variety so that people have another option if one product does not suit them. Even if that option is not tolerated by a significant number of people.

And we need the ability to express what we want, reject what we do not tolerate, ask for alternative formulations, without being made to feel bad about it! In general, none of us know whether we will tolerate a particular product until we try it. (Unless we have a definite known intolerance of an excipient.)

helvella profile image
helvellaAdministrator in reply toCwetch

Does it say something like FT4 14 (12 - 22)?

The numbers in brackets are the reference interval (range).

If not, you are going to have to find out. How did you get the results? If over the phone, then ask for them to be printed out. We often find they do not includes the RIs when reading them out but they are usually there when printed.

Cwetch profile image
Cwetch in reply tohelvella

No it does not show on my blood results in Patients knows best Thanks

SlowDragon profile image
SlowDragonAdministrator

Your results show you are Hypothyroid and in need of dose INCREASE so yes GP correct to increase to 75mcg daily

Which brand of levothyroxine were you taking on 50mcg

Which brand for 75mcg

50mcg levothyroxine is only the standard STARTER dose. Unless extremely petite, likely to eventually need to be on at least 100mcg

What symptoms are you getting

Hypo symptoms can be mistaken for hyperthyroid symptoms…..increased anxiety, even fast heart rate

Request GP test vitamin D, folate, B12 and ferritin

Low vitamin levels are extremely common when hypothyroid, and as we get older

Have you had thyroid antibodies tested for autoimmune thyroid disease

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Cwetch profile image
Cwetch in reply toSlowDragon

Thank you Almus 50. Mercury 25 Fast heart rate feeling sick palpitations increased anxiety.Sweating

No antibodies test

Will request GP for test never felt so bad I thought I was having a heart attack

SlowDragon profile image
SlowDragonAdministrator in reply toCwetch

When very hypothyroid it can be difficult to increase dose levothyroxine

You may need to increase levothyroxine in smaller steps so only add 12.5mcg alongside 50mcg initially…..cut 25mcg in half…..or even only add 1/4 of 25mcg

Wait 6 weeks….then increase again

Many people find different brands of levothyroxine are not interchangeable- you may need to always get same brand of levothyroxine at each prescription

Which brand do you normally take for 50mcg

and/or

Try split the dose …..eg taking 25mcg waking and 50mcg at bedtime (or vice versa)

Once on 75mcg daily retest 6-8 weeks later

Cwetch profile image
Cwetch in reply toSlowDragon

Almus for 50 can't take Teva gives me stomach problemsIt really makes sense what you have said thank you so much

Cwetch profile image
Cwetch in reply toCwetch

Should I keep taking 25 daily till blood test next week Or start taking tomorrow 12.5 am and a 50 at night

SlowDragon profile image
SlowDragonAdministrator in reply toCwetch

TSH 12.5

T4. 14

when were these test results…..very recent since you started feeling hyper?

How long have you been on just 25mcg

Cwetch profile image
Cwetch in reply toSlowDragon

Began to feel hyper last Wednesday but had been experiencing sweats and racing a week before. Stopped meds on Monday started to feel better took 25 Tuesday before blood test and ECG blood results came back yesterday been on 25 since feel calmer than before

Cwetch profile image
Cwetch in reply toCwetch

Same thing happened last year.Feb this year was my previous blood test TSH 0.91

T4 13.2

SlowDragon profile image
SlowDragonAdministrator in reply toCwetch

What vitamin supplements are you taking

Sweats can be low B vitamins

Racing heart can be under medicated

Stopped meds on Monday started to feel better took 25 Tuesday before blood test

So TSH does not change rapidly….it takes 4-6 weeks to respond to reduction in levothyroxine so TSH appears to be genuinely high ……

Suggest you request retest including vitamin D, folate, B12 and ferritin

Cwetch profile image
Cwetch in reply toSlowDragon

Hi not taking any vitamins I will definitely request next blood next week .I usually have a blood test every 3 months.Last one February longest time since feeling so unwell.

Thank you so much for your info a time

Really appreciate

Cwetch profile image
Cwetch in reply toCwetch

Seriously thinking of asking for a referral to an consultant Endocrinologist What do you think

SlowDragon profile image
SlowDragonAdministrator in reply toCwetch

BEFORE booking any consultation you need FULL thyroid and vitamin testing

Get GP to test vitamin levels now

Essential to have OPTIMAL vitamin levels

Most thyroid patients need to supplement vitamin D, magnesium and vitamin B complex continuously, some also need separate B12, especially initially…..and some need iron

Test first before starting any vitamin supplements

Also need thyroid antibodies tested for autoimmune thyroid disease (hashimoto’s) if not has antibodies tested before

At the moment you’re very hypothyroid and not on high enough dose levothyroxine

Come back with new post once you get results

List of thyroid specialists and endocrinologists

healthunlocked.com/thyroidu...

Likely to take a few small increases in levothyroxine to get levels up

FT4: 14 pmol/l (Range 9 - 19)

Ft4 only 50.00% through range

Approx how much to you weigh in kilo

Test thyroid levels 6-8 weeks after getting levothyroxine to 75mcg daily

Or if struggling to tolerate increasing to 75mcg …..after 6-8 weeks at 62.6mcg daily

Most people when adequately treated will have Ft3 at least 50-60% through range and often need Ft4 nearer 70-80% through range

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

Currently on offer 20% off

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Cwetch profile image
Cwetch in reply toSlowDragon

Will do thanks

Cwetch profile image
Cwetch in reply toSlowDragon

Will let you know the outcome thank you so much

Cwetch profile image
Cwetch in reply toSlowDragon

Your advice was so valuable can't thank you enough. Now on 100 instead of 50 and 75 every other day.Due to have a round of VitB12 injections 5 in all plus to start taking folic.VitD has not come back in my results yet.

I requested the extra blood test as you advised thank goodness I did.Feeling a lot better and more energy.

Update

SlowDragon profile image
SlowDragonAdministrator in reply toCwetch

Good to hear 👏

Retest full thyroid and vitamin levels in another 6-8 weeks

Cwetch profile image
Cwetch in reply toSlowDragon

Thanks have it booked for Nov being monitored now first time I have actually been seen by a Dr first in 2 years 👏

Sleepman profile image
Sleepman

Biotin in vitamin B complex can mess up blood results. Sorry if I am repeating what someone else has posted.

Cwetch profile image
Cwetch in reply toSleepman

Hi don't take any vitamins

serenfach profile image
serenfach

It is a shame the T3 was not tested. With those results I can bet your T3 is low. When my T3 gets low, I get all sorts of unpleasant symptoms, including a racing heart, sweats and cramp. With your TSH so high, they really should have done a T3 test and that would give a much clearer picture of what is going on. You and I are of an age where we hate to challenge the medical profession, but I have learned not fighting gets me more ill.

I find visualising Mrs Thatcher and what she would say helps, especially the tone of voice. Good luck, and sending you a cwtsh.

Cwetch profile image
Cwetch in reply toserenfach

Thank you for your support will request a T3 next week on my next blood.

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