Advice needed : Hey everyone out there Need some... - Thyroid UK

Thyroid UK

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Advice needed

traceyvinall profile image
9 Replies

Hey everyone out there

Need some advice

I’ve had my bloods come back and GP has dropped my meds from 100 mcg to 75 mcg

I’ve been taking 75 mcg for a couple of months now I’ve been feeling a bit emotional and my brain a bit more foggy than usual

I’m 54 had a hysterectomy at 32 years and I’ve been diagnosed with fibromyalgia about 4 years ago although I believe I’ve had it for years

I can’t take any hormone replacement as gynaecologist said not too as I suffered with endometriosis

I’ve just picked up my meds and have been given 25mcg and 50 mcg levothyroxine but two different makes

Do any of you know if it will make any difference to my body in taking two different makes? I feel so fragile I’m just about functioning.

Any advice would be welcome

Thankyou

Trixie

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SeasideSusie profile image
SeasideSusieRemembering

traceyvinall

Do any of you know if it will make any difference to my body in taking two different makes?

Some people are fine with any make, mixing and matching makes no difference to them. However, some people aren't. We tend to advise that members should always stick to the same make that they know suits them.

What brand were you on and what brands have you now been given?

Presumably, because you are now on 75mcg, they have changed you from a 100mcg tablet to 50mcg and 25mcg. There is no need for this. You can alternate 50 and 100mcg to average 75mcg daily, lots of us do this and it's fine. So if your original brand makes both 100mcg and 50mcg (which I think they all do) there is no need to give you different brands.

However, from the symptoms you describe, it makes one wonder if you actually needed a reduction in dose. On which result did your GP make this dose change?

Do you have a print out of your results? If so please post the results, with their reference ranges (essential to have ranges as these vary from lab to lab). If you don't have them please as the receptionist at your surgery (not the doctor) for a print out. Don't accept verbal or hand written results, mistakes can be made, ensure you get a print out.

It's very likely your GP has based the reduction on your TSH result, and that is wrong because TSH is not a thyroid hormone. The thyroid hormones are FT4 and FT3 (FT3 being the most important one but this is rarely tested).

Do you always do your tests as we advise here, ie

* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH

* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can 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. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. 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 can give false results (most labs use biotin).

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

traceyvinall profile image
traceyvinall in reply to SeasideSusie

Thank you so much for quick reply

All I can remember from G P was she said something was being suppressed

Can’t remember what it was as my brain function seems to be getting worse

I might try and get a print out from gp and post

Just sick of feeling fatigued and confused

I’m usually very positive but this really gets me down

Thankyou x

SeasideSusie profile image
SeasideSusieRemembering in reply to traceyvinall

traceyvinall

All I can remember from G P was she said something was being suppressed

That will be TSH then. I wonder if they also tested FT4. My TSH is always suppressed and the lab always tests FT4 and FT3 but not all do. But as I said, it's not the TSH that gives a picture of your thyroid status, it's the FT4 and, more importantly, the FT3 test.

I might try and get a print out from gp and post

Ring the surgery today. Say to the receptionist (do not ask the doctor, they don't like us asking or knowing)

"Can you please arrange for me to have a print out of my thyroid test results. Can I come and pick them up on Friday, or are you able to email or post them to me?"

That's all you have to do and say.

The receptionist may very likely have to get permission from a GP to release the results to you, that is pretty standard. Mine are always available the day I ask for them, never a problem unless the doctor wants to speak to me and then I have to wait until afterwards for my results.

Here in the UK we are legally entitled to our test results without question or charge.

If you are asked why you want them you don't have to give them a reason, but if you feel you must then just say "For my own records", nothing more.

If you are in England you may be able to register for online access to your results, you'll need to ask your surgery about that.

traceyvinall profile image
traceyvinall in reply to SeasideSusie

Thanks for your support Susie

Much appreciated x

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Which brand of levothyroxine do you normally get

Which brands of levothyroxine have you just picked up?

Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine

75mcg is only one step up from starter dose

What were the results that prompted dose reduction

(Just testing TSH and Ft4 is completely inadequate)

Fibromyalgia is frequently inadequately treated hypothyroidism and/or low vitamin levels

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and to retest thyroid levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

Is this how you do your tests?

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

traceyvinall profile image
traceyvinall in reply to SlowDragon

Wow Thankyou so much

Think I need to go private route

Thankyou again x

SlowDragon profile image
SlowDragonAdministrator in reply to traceyvinall

Make sure you test early Monday or Tuesday morning and then post kit back immediately

Results are emailed to you 2-3 days later

If doing Medichecks or Blue horizon tick box, “no GP comments required “ as they are not worth the extra waiting time

What vitamin supplements are you currently taking, if any?

Important to stop taking any supplements that contain biotin as biotin is used in many testing lands and biotin supplements can falsely affect test results

Low vitamin levels tend to lower TSH

TSH is all GP tests and looks at and is completely inadequate

Low vitamins tend to result in poor conversion of levothyroxine (Ft4) into active hormone (ft3)

Low Ft3 results in low vitamins.....a vicious circle

NIKEGIRL profile image
NIKEGIRL

Hi. I’ve come to give u some emotional support. I’m sorry you feel so low. I’m hyper and can totally relate. I feel emotional vulnerable and physically exhausted. I always say it won’t last forever but it is for now. Ideally you need to know where TSH, T4 and T3 is. This will let u know where u r in the ranges. It sounds as if your levels are not optimal for u hence why u feel so low. On what basis did the dr say u needed a lower dose? I’m hoping you don’t say TSH alone as that’s not ok. Do u always get copies of your blood tests? If u don’t get copies then now is a good time to start. If u can get your blood results then do a new post. It may be u will have to test blood privately to get all the T’s as I call them.

traceyvinall profile image
traceyvinall

Thankyou

Getting back onto my surgery now

Really appreciate the support x

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