Hypothyroidism inaccurate results

[Jules29884]

Hi. Looking for advice really. I have quite a lot of symptoms linked to hypothyroidism. Dr sent me for basic tests including TSH which only showed borderline anaemia. I asked for further specific thyroid tests (TS3 & TS4 I believe), which again cake back “normal”. I have read that these can still be inaccurate and iron tablets aren’t doing anything for my symptoms. Has anyone had negative results but it turns out you do have it? Is it worth paying for the specific tests or seeing if I can get these through my healthcare?? Thanks

[Lalatoot]

Jules it isn't that the results are inaccurate; it is that normal covers a wide range. For example in some countries you would be treated with a TSH of 3. Here they usually wait till it is 10 even though the top of the normal range is around 4.5.

For FT4 one of the normal ranges (they differ between testing labs) is 10 - 25. Your result would be normal at 10 and your result would be normal at 25. However how you might be feeling at either of those numbers is an individual thing. We need to be at the normal number that is optimal for us.

So do not accept the word normal from the GP. Ask for the actual result and the ranges. Post them on here and we will help.

[jconnor123 in reply to Lalatoot]

Is that true that some countries will treat someone with a tsh of 3 though ?

[SeasideSusie Remembering in reply to jconnor123]

jconnor123

Is that true that some countries will treat someone with a tsh of 3 though ?

Yes, apparently.

It used to be lower than 10 in the UK at one time, can't remember when it was raised.

[Jules29884 in reply to SeasideSusie]

Results in reply below if anyone can help

[Jules29884 in reply to Lalatoot]

Thank you so much for replying! I will try to get the results from my Drs tomorrow. Not sure how I will know the upper and lower boundaries as it usually just the receptionist that reads a result? Will see what I can find out. So glad to know there is more to look at as I am getting down with the symptoms (this is also a symptom!). I have vitiligo so autoimmune already prevalent and maternal grandmother had this plus hypothyroidism. I was weirdly down hearted when I was told there isn’t anything and no next steps. Thanks again!

[Nanaedake in reply to Jules29884]

Have you had B12 tested? I belive deficiency can be linked to vitiligo.

[Jules29884 in reply to Nanaedake]

I can’t remember what other things were tested to be honest. Will definitely find out tomorrow 👍🏻

[greygoose in reply to Jules29884]

Ask the receptionist for a print-out. It is your legal right to have one, and that way you will get the ranges as well as the results. Never accept a receptionist reading out your results, there's so much scope for error that way, insist on a print-out.

[shaws Administrator in reply to Jules29884]

Ask secretary for a print-out each time you have a blood test for thyroid hormones (or even if you want a copy of other blood tests).

[SeasideSusie Remembering]

Jules29884

If you post your test results, along with their reference ranges (ranges are important because they differ from lab to lab), we may be able to offer some suggestions. Where in range your results lie will tell us a lot more than just saying "normal".

One very important thing is how you did your test. When looking for a diagnosis of hypothyroidism we need the highest possible TSH and for this we need to have the blood drawn no later than 9am, before eating or drinking anything other than water. If we take a B Complex or Biotin then this needs to be left off for 7 days before the test because it can cause false results.

[Jules29884 in reply to SeasideSusie]

Thank you for replying! As my above reply, I am going to ring my Drs to find out the actual results rather than just being told they came back normal. Will see if I can get the references ranges also. My first test (TSH) was done at around 3pm and the next test for TS3 & TS4 was at around lunchtime! I dont currently take medication. Thanks again

[SeasideSusie Remembering in reply to Jules29884]

Jules

Ask the receptionist for a print out of your result, everything you need to know will be on there. Don't accept verbal or hand written results as mistakes can be made, always get a print out.

By the way, it's FT3 and FT4 (Free T3 and Free T4) not TS3 and TS4

As you have one autoimmune condition then it's possible to have more, it could be that you have raised thyroid antibodies (autoimmune thyroid disease which is the most common cause of hypothyroidism). If not tested, ask for Thyroid Peroxidase and Thyroglobulin antibodies to be tested.

[Jules29884 in reply to SeasideSusie]

Thanks - knew there was a T and a 3/4 in there somewhere 😂

[shaws Administrator in reply to Jules29884]

The TSH (thyroid stimulating hormone) is highest early a.m. and drops throughout the day, that's why we advise the earliest possible appointment (even if you make it weeks ahead) fasting (you can drink water) and if taking thyroid hormone replacements (usually levothyroxine) you'd allow a gap of 24 hours between last dose and test and take afterwards.

This procedure helps to give the highest TSH. The aim, if hypothyroid, is to reduce TSH to around 1 or lower although many doctors believe if it reaches 'somewhere' in the range that we're on a sufficient dose. Not true.

Ask also for B12, Vit D, iron, ferritin and folate to be checked at the next blood test.

[Jules29884 in reply to shaws]

Thanks for all the advice. Will see how I get on with the Drs tomorrow and post on here

[shaws Administrator in reply to Jules29884]

'One upon a time' (before blood tests were introduced for hypo) we were - since 1892 - all diagnosed upon our clinical symptoms alone and given a trial of NDT (natural dessicated thyroid hormone) which was gradually increased until symptoms were relieved. Thyroid hormone replacements were made from pigs' thyroid glands and contained all of the hormones a healthy gland would have produced.. No blood tests nor levothyroxine had been invented then.

[Jules29884 in reply to shaws]

Results in reply below if anyone can help

[Lora7again]

Does your surgery have Patients Access? Mine does and I don't have to talk to the receptionist who doesn't know anything about thyroid disease or how to read the blood results correctly. If it does you can just log in and see them yourself and then put them on here for help and advice. You are entitled to see all your results and your medical records because it is the law.

[SlowDragon Administrator]

Important to test early morning before eating or drinking anything other than water to get highest TSH (which is all most GP’s look at

researchgate.net/publicatio...

“According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”

“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”

ncbi.nlm.nih.gov/pubmed/252...

TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.

[SlowDragon Administrator]

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

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 D, folate, B12 and thyroid antibodies

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 .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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 ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Come back with new post once you get previous results and new results

[Jules29884 in reply to SlowDragon]

Results in reply below if anyone can help

[Jules29884]

OK so results I have back. 2 different blood tests.

1st test taken at around 3pm after not being told to fast:

Serum TSH level (XaELV) - 1.9 mi/L [0.2-4.0]

Also tested for electrolyte levels, liver function, kidney injury, haemoglobin, b12, ferritin, folate & full blood count.

2nd test taken 1 week later around lunchtime after not being told to fast:

Serum free T4 level (XaERr) - 16.5 pool/L [11.0-22.6]

Serum free triiodothyronine level (XaERq) - 4.8 pool/L [3.5 -6.5]

Serum total 25-hydroxy vitamin D level (Xabo0) - 56.1 Nono/L [<30 indicates deficiency, >50 indicates sufficiency

[SlowDragon Administrator in reply to Jules29884]

Can you add B12, folate and ferritin results and ranges

[Jules29884 in reply to SlowDragon]

B12 - 241 my/L [211.0-911.0]

Folate - 8.8ug/L [3.0-14.4]

Ferritin - 23ug/L [10.0-291.0]

[SlowDragon Administrator in reply to Jules29884]

Ferritin and B12 are very low

Are you vegetarian or vegan?

Ask GP for testing for Pernicious Anaemia

Please add full blood count and haemoglobin results

[Jules29884 in reply to SlowDragon]

Nope not veggie or vegan and do eat lots of meat (apologies veggies!) both red and white. Do you think any of this points to hypothyroidism or just deficiencies in these areas? Worrying about hair loss! 😬

Again, this test was in the afternoon and I had eaten and drunk etc as wasn’t informed not to.

Thank you for helping!

[Jules29884 in reply to SlowDragon]

How do I add a picture on here of the full blood tests results? Too many to type!

[SlowDragon Administrator in reply to Jules29884]

You can only add one photo in the opening top part of post

[Jules29884 in reply to SlowDragon]

Thanks. I have added all in manually anyway now:

Full blood count - 140g/L [115.0-150.0]

Haemoglobin concentration - 5.5 10*9/L [3.5-11.0]

B12 - 241 my/L [211.0-911.0]

Folate - 8.8ug/L [3.0-14.4]

Ferritin - 23ug/L [10.0-291.0]

Serum TSH level (XaELV) - 1.9 mi/L [0.2-4.0]

Serum free T4 level (XaERr) - 16.5 pool/L [11.0-22.6]

Serum free triiodothyronine level (XaERq) - 4.8 pool/L [3.5 -6.5]

Serum total 25-hydroxy vitamin D level (Xabo0) - 56.1 Nono/L [<30 indicates deficiency, >50 indicates sufficiency

[Jules29884 in reply to SlowDragon]

Full blood count - 140g/L [115.0-150.0]

Haemoglobin concentration - 5.5 10*9/L [3.5-11.0]

[SlowDragon Administrator in reply to Jules29884]

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

[SlowDragon Administrator in reply to Jules29884]

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

It’s trial and error what dose we need

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...