Advice please on results: I am new to this group... - Thyroid UK

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Advice please on results

Noushie profile image
12 Replies

I am new to this group and this is my first post. have been taking levothyroxine for over 10 years, over the last year i have had a slow increase in feeling hot, hot sweats, and usual in the evening i feel very cold for a few hours then the sweats start. This seems to be cyclical as it is worse for at least a week each month. and worse each month. Over the last 2 weeks I have been very hot, last week started with headaches, hot all the time and the hot flushes/sweats gradually got worse and worse until by Thursday i was having them every 10-20 minutes, so tired, and sleepy, ( but couldn't sleep as sweats kept me awake0, aching all over and ended up in bed for 2 days. It has gradually abated but still so fatigued and headachy.

GP upped levo to 100 after last test 3 months ago and I had a check up one last week. (GP ringing tomorrow) I do not understand my test result (yes I am going t check out the files asap) can anyone help or read these results please.

Clinician viewed24 Sep 2020

Result typePathology

TestsThyroid function test

Filed byDr Emily Cooper at Derwent Practice (NHS Scarborough and Ryedale CCG) - 28 Sep 2020 11:49

ResultNormal

What you need to doNo Further Action

Thyroid function test Aim for TSH towards the bottom of the reference range for T4

replacement in primary hypothyroidism, targeting to around

1.0mU/L for symptomatic patients.

Advice on requesting and interpreting TFTs on Lab Med website

Refer to tinyurl.com/BiochemInfo for further information

Measurement of FT4 is of little additional value in patients

stabilised on thyroxine. Please monitor using TSH.

Serum TSH level 0.53 mU/L [0.27 - 4.2]

Serum free T4 level 20 pmol/L [11.0 - 22.0]

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Noushie profile image
Noushie
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12 Replies
fuchsia-pink profile image
fuchsia-pink

Welcome to the forum.

I'm afraid I have to disagree with the notes on your blood result!

Measurement of FT4 is of little additional value in patients stabilised on thyroxine. Please monitor using TSH.

Most of us would say the exact opposite ... TSH is a message from the pituitary to the thyroid, telling it to work harder if it doesn't produce enough thyroid hormone [so a high TSH indicates an under-active thyroid]. It is the primary tool in diagnosing thyroid issues, but not itself a thyroid hormone.

T4 is the inactive hormone produced by the thyroid, which converts to T3, the active hormone needed in every cell in your body.

Once you are on thyroid meds, TSH is pretty irrelevant, because your body is getting the thyroid hormone it needs from the medication - so you really need free T4 and free T3 testing to see how much hormone you have - and how well your free T4 converts to free T3.

As it is, your free T4 is nice and high - but you haven't had free T3 tested, and most of us would say that this is the most important test. As you still have hypo symptoms, it's quite likely that your free T3 is low - ie you are a "poor converter". But you won't know unless free T is tested.

If you can. try and persuade your GP to do full thyroid testing - TSH, free T4, free T3, thyroid antibodies [which if too high will show the reason for you being hypo is Hashimoto's] and key nutrients - ferritin, folate, vit D and B12 - your levo works best when these are good.

If your GP won't do this testing, it may be worth you getting private blood tests - you will see LOTS of posts here about private testing.

Good luck x

Noushie profile image
Noushie in reply tofuchsia-pink

Thankyou I will read this out to my GP tomorrow. Finger crossed she will listen.

fuchsia-pink profile image
fuchsia-pink in reply toNoushie

Tell her these are the blood tests recommended by Thyroid UK - it may help!

Marz profile image
Marz in reply toNoushie

T3 very rarely tested in the NHS - also little importance given to vitamins and minerals - sigh ! Good Luck ...

Noushie profile image
Noushie in reply tofuchsia-pink

Well I have spoken to GP who said that it is rubbish re TSH and that is the NHS recommended way to test and no need to go further as mine was within normal range.

I got terribly upset and told her I couldn’t go on like this , she suggested it’s the menopause ( I went thro that at 43) I’m 65 !!! and suggested HRT I had to tell her I can’t take it as I’ve had breast cancer !!!

She was then very sympathetic and agreed to the blood test ( I’ve booked an appointment for first thing next week) and is going to refer me to the endocrine team. Though in today’s climate that could take a long time.

She also recommended I take /try evening primrose, red clover, black cohosh and sage.

I have also read here that my very dry skin, painful heels, sore eyesand other things are connected. I will post results of new tests when I receive them.

fuchsia-pink profile image
fuchsia-pink in reply toNoushie

Well done for standing your ground!

What your GP didn't tell you is that she only got 30 mins on thyroid when she did her GP training (albeit that this is a full half hour more than she got on nutrition) - and that the NHS is totally TSH-obsessed.

Please get your full test results and lab ranges after the tests are done - don't allow them to fob you off with "all OK" or "in range" or "normal" - you want numbers - the test results and the lab ranges. And you're not aiming for in range" - you want "optimal" :)

Noushie profile image
Noushie in reply tofuchsia-pink

Thanks I was quite politely adamant and the tears helped lol. I will get full tests as I have access to my results etc.. thro GP online. Thanks, watch this space

Noushie profile image
Noushie in reply tofuchsia-pink

Hi, I now have my results from blood tests.

Pathology Investigations

Serum vitamin B12 level 247 ng/L [197.0 - 771.0]

Interpretation of haematinics: tinyurl.com/BiochemInfo

Serum ferritin level 52 ug/L [30.0 - 260.0]

Interpretation of haematinics: tinyurl.com/BiochemInfo

Serum folate level 8.7 ug/L [> 3.9]

Fasting sample preferred. Recent folate or high dose biotin

intake may mask deficiency.

Serum gamma-glutamyl transferase level 86 U/L [0.0 - 38.0]

Above high reference limit

Plasma parathyroid hormone level 4.8 pmol/L [1.6 - 6.9]

Full blood count

Haemoglobin concentration 128 g/L [115.0 - 165.0]

Platelet count - observation 258 x10^9/L [150.0 - 450.0]

Red blood cell count 4.52 x10^12/L [3.9 - 5.4]

Haematocrit 0.406 L/L [0.36 - 0.47]

Mean cell volume 90 fL [80.0 - 100.0]

Mean cell haemoglobin level 28.3 pg [27.0 - 32.0]

Total white blood count 7.2 x10^9/L [4.0 - 11.0]

Neutrophil count 3.5 x10^9/L [2.0 - 8.0]

Lymphocyte count 3.3 x10^9/L [0.5 - 4.0]

Monocyte count - observation 0.4 x10^9/L [0.2 - 1.2]

Eosinophil count - observation 0.0 x10^9/L [0.1 - 0.5]

Below low reference limit

Basophil count 0.0 x10^9/L [0.0 - 0.1]

Urea and electrolytes

Serum sodium level 138 mmol/L [133.0 - 146.0]

Serum potassium level 4.2 mmol/L [3.5 - 5.3]

Serum urea level 6.0 mmol/L [2.5 - 7.8]

Serum creatinine level 69 umol/L [45.0 - 84.0]

Bone profile

Serum calcium level 2.22 mmol/L [2.2 - 2.6]

Serum inorganic phosphate level 1.02 mmol/L [0.8 - 1.5]

Serum alkaline phosphatase level 94 IU/L [30.0 - 130.0]

Serum albumin level 42 g/L [35.0 - 50.0]

Serum adjusted calcium concentration 2.28 mmol/L [2.2 - 2.6]

Serum total protein level 67 g/L [60.0 - 80.0]

Liver function tests

Serum alanine aminotransferase level 16 U/L [0.0 - 34.0]

Serum total bilirubin level < 3 umol/L [< 21.0]

Serum C reactive protein level < 1 mg/L [0.0 - 5.0]

Serum CA 125 (cancer antigen 125) level 13 kU/L [0.0 - 35.0]

CA125 <35 kU/L does not exclude malignancy

Follow NICE Guidance NG12 when interpreting this result.

More info at: cks.nice.org.uk/ovarian-can...

CA125 assay standardised against the Enzymun-Test CA125 II method

eGFR using creatinine (CKD-EPI) per 1.73 square metres 80 mL/min/1.73 m*2

SlowDragon profile image
SlowDragonAdministrator

Extremely important to regularly retest vitamin D, folate, ferritin and B12

Plus obviously TSH, Ft4 and Ft3

Do you know if you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies?

AllThyroid testing should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before blood test

Is this how you did this test?

Do you always get same brand of levothyroxine?

NHS England Liothyronine guidelines clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

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 vitamins including folate (private blood draw required)

medichecks.com/products/thy...

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 if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

waveylines profile image
waveylines

I dont know how you got on with your GP but they have very little say on what thyroid tests the lab will do. Often the labs will overide the GPs request. The labs are imstructed to do TSH only. However if the TSH is very supressed they will then check FT4. Nothing else unless the GP thinks you are suffering with an over active thyroid.

It would be worth her checking your B12, vit D, iron and ferritin.

Make sure you get a copy of the actuals results.

Your best bet is do a thyroid panel test privately. Thyroid UK has a list on their website. You can then take your results to your GP but also post them on here. Lots of very knowledgeable people on here can help you.

silverfox7 profile image
silverfox7

Waveylines has said quite rightly to get a copy of your results but make sure they also give the ranges. The ranges differ from lab to lab so to comment we would need to know which range your testing lab has to interpret them accurately.

haggisplant profile image
haggisplant

Hi Noushie,

Was your test in the morning and after taking thyroxine?

You could increase your ferritin a little (iron) but it doesn’t sound like that’s the issue.

What did your Gp raise your thyroxine from? We’re you on 75 previously? And do you know what your tsh was then? Give the surgery a ring to find out. (You are allowed to know!) also ask the ranges or for print outs as others have said.

Tsh is a very rough guide and yes ideally t4 and t3 complete the picture, but t3 can vary a lot during the day. T4 is pretty stable when you’re on thyroxine. Tsh is relatively stable but has a fluctuation pattern during the day, year and also menstrual cycle (I know you’re past this!) so a morning test is best.

Also, why are you on the calcium?

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