test results : my test results have come back... - Thyroid UK

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test results

Sand11 profile image
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my test results have come back abnormal the GP had been tweaking my levothyroxine for over 6 months now maybe even longer as they were over medicating me

Would like to understand what advise on those results mean for me and what the GP needs to follow

I had a deficiency in B12 been on and off supplements as per advise from GP had a steady 8 months on this supplement and b12 has come back normal

advise to take forward to GP as would like to know if I need to stay on supplement to keep my B12 normal

Test results as follows from my thyroid blood test

Specimen

Specimen Type: Serum

Specimen Reference#: 1

Collected: 02 Dec 2024

Received: 03 Dec 2024

Provider Sample ID: CP221243G

Pathology Investigations

Thyroid function test

Serum free T4 level 14.5 pmol/L 19.7 -

24.71; 99% reference range was applied for adults after review with Endocrinology.

Please note change to method-specific reference range

from 18th November 2024

Serum TSH level 6.9 mlU/L 10.55 - 4.78];

Probably under-replaced; Outside reference range

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Sand11
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19 Replies
greygoose profile image
greygoose

Hi Sand11, welcome to the forum. :)

I take it that by 'tweaking' you mean 'reducing' your dose, and now he's gone much too far! Which is fairly typical of doctors that just can't leave a dose alone even when you're well. At 6.9 your TSH is far too high and you are now very hypo. It should be 1 or under.

I can't say anything about the FT4 because I don't understand what is written: is the range really 19.7 - 24.71? That would be a very strange range for an FT4. And if that is the range then you are very much under-range, and that too says you're very hypo.

Do you have the numbers from when you were said to be over-medicated?

Do you have Hashi's?

Do you always get your blood draw early morning and fasting (before 9 am), leaving a gap of 24 hours between your last dose of levo and the blood draw?

What time of day do you usually have your blood draw?

Sorry it's more questions than answers, but we do need all the details and numbers before we can say anything much.

Especially for B12. I doubt very much your doctor understands B12 - they know nothing about nutrition in general - but it's highly unlikely that you don't need it anymore. You may have got your levels into the so-called normal range, but they won't stay there for long if you stop the supplements.

When you are hypo, it causes low levels of stomach acid, which makes it difficult to digest food and absorb nutrients. Doctors refuse to believe this is possible, but it's true, which is why we have to take so many supplements.

What's more, with B vitamins, there's not much point in just taking one isoltaed B vit - e.g. B12 - because they all work together and need to be kept balanced. So as well as the B12, you should have been taking a B complex. So, can you tell us the numbers, please? Result and range when you were deficient, result and range now, and how much B12 you were taking and which form of B12 it was: methylcobalamin or cyanocobalamin?

Once we have all the details, I'm sure we'll be able to make sensible suggests for future treatment. ;)

Sand11 profile image
Sand11 in reply togreygoose

Thank you so much for your reply

Yes tweaking they have been reducing my medication

I take 50mcg Monday to Thursday and 75mcg Friday to Sunday

This is what I was advised by the GP had to buy a Dorset box

I have blood test between 08:30-09:30 none fasting and I take my medication levothyroxine in morning before I go

I take my medication every morning and wait half hour before having any food or drinks

To the best of my knowledge I don’t have Hashi’s never been told I have that diagnosis

B12 supplement I take in tablet form , from Sainsbury’s

useful info to keep on taking it

I was advised when my bloods were took when results came back normal on my last test before this latest one , to stop taking B12 supplement

I had to challenge the doctor by asking her how she , was going to monitor , my levels

Re- peat blood test shown a drop in levels , hence, why she advised me to go back on taking x1 of B12 tablet a day

My last results for B12 say normal.No further action - however- I need -to contact GP in regards to my thyroid :so I’ll discuss staying on B12 with her then

Thank you so much for the advice to take a vitamin B supplement as well as B12

I will check back on my results for what my levels were when they noticed they were over medicating me …

I think this was when it started march 2024

I think it was in March as per info noted over medicating myself

greygoose profile image
greygoose in reply toSand11

I have blood test between 08:30-09:30 none fasting and I take my medication levothyroxine in morning before I go

OK, so this is why they thought you were over-medicated. All you were testing was the dose you'd just taken! You have no idea what your usual circulating level of T4 is - which is what you need to know with a blood test. To achieve that, you need to leave a gap of 24 hours between your last dose of levo and the blood test.

And it's better to have breakfast after the blood draw because certain foods, and caffeine can lower TSH.

And the result you can see is that you are now on a rediculously low dose of levo, and you're hypo again. You were never over-medicated at all.

I take my medication every morning and wait half hour before having any food or drinks

Probably better to leave an hour for maximum absorption.

To the best of my knowledge I don’t have Hashi’s never been told I have that diagnosis

No, they probably wouldn't tell you because they don't understand the importance of knowing.

Do you get print-outs of your blood test results? It is your legal right to have one. You need to know exactly what was tested, and exactly what the results were. That way you would see if antibodies have been tested and know if you have Hashi's or not. You need to keep your own records. Just ask for a print-out at reception.

B12 supplement I take in tablet form , from Sainsbury’s

useful info to keep on taking it

Sorry, but I have no idea which B12 they sell in Sainsbury's, I don't live in the UK. But, in tablet form or spray, there are two types/forms of B12: methylcobalamin and cyanocobalamin. It's the methyl you should be taking because that is better absorbed.

But, it's not the B12 you should keep on taking, but a methylated B complex containing all the Bs, to keep them balanced. But don't buy it in Sainsbury's! Get Thorne Basic B or Igennus B complex from Amazon.

And you don't need to discuss it with your GP. In fact, it's better if you don't. Doctors know nothing about nutrients and she's already given you bad advice on B12. So, ask your questions on here and self-treat with nutrients. Leave the GP out of it.

So, the way forward is to get your dose put back up to whatever it was before, and in future follow the protocol laid out on here to get accurate blood test results and avoid inappropriate reductions.

Have you had your folate, ferritin and vit D tested? If not, they need testing, too. And antibodies if they've never been done. :)

Sand11 profile image
Sand11 in reply togreygoose

Thank you again for all the advice you have shared on here with me today

Thyroid Test result I do have of which I thought are in detail electronically shared

I’m often low in iron

Last test shown up pernicious anemia

Went on iron supplements ferritin folate repeated blood test shown normal levels GP advise to stop taking iron tablets

I have never been tested for vitamin D

It’s so nice to able to reach out to others like yourself

Again thank you…

Sand11 profile image
Sand11 in reply togreygoose

I will definitely on next blood test do as you have shared with me today

I will leave a gap of 24 hours before taking my next dose of levothyroxine

This is so interesting to read as no doctor has ever advised me

on what to do prior to blood test …

Again sending gratitude for all the info you have shared with me ..

greygoose profile image
greygoose in reply toSand11

No, leave a gap of 24 hours between your last dose of levo and the blood draw. Take your next dose after the blood draw.

Not surprising no doctor has ever told you that. They just don't know. They haven't a clue about treating hypo, doing blood tests or interpreting them. Which is why so many forums like this one exist.

Sand11 profile image
Sand11 in reply togreygoose

I think in March as per test results they started to reduce dose

Pathology Investigations

Thyroid function test

Serum free T4 level 21.7 pmol/L [9.0 - 25.0]

Serum TSH level 0.09 miu/L [0.3 - 5.0];

Outside reference range

I have so many test results on my app again thank you so much for your reply Yes tweaking..

Sand11 profile image
Sand11 in reply togreygoose

Sorry I am new to the forum

These are my test results for B12

Pathology Investigations

Serum vitamin B12 level 236 ng/L 1220.0 - 700.0]

General Information

Service Type: New Status: Unspecified

Report Date: 02 May 2024

And

Received: 03 Dec 2024

Pathology Investigations

Serum vitamin B12 level 309 ng/L |211.0 -

911.01; Patients with symptoms suggestive of B12 deficiency may

benefit from improving their levels to above 350 ng/L.

Additional tests are available to evaluate

B12

deficiency in patients with levels in the low-normal

range (211-350 ng/L).

from 25th October 2024

greygoose profile image
greygoose in reply toSand11

Having trouble deciphering all that. We really don't need every single word that is on the result, just the date, result and range.

Serum vitamin B12 level 236 ng/L 1220.0 - 700.0]

Something wrong with the range, there. I think you put the decimal point in the wrong place at the bottom of the range. :)

So that was in May 2024? Your B12 was very low, and you should have been tested for Pernicious Anemia in an ideal world. Was that when you started taking B12? Did you have your folate tested at that time? The two should always be tested at the same time.

Serum vitamin B12 level 309 ng/L |211.0 -911.01;

And this was in Decmeber? Is this when she told you to stop the B12? I can't imagine why! The result is not much better than in May, and still dangerously low. It should be at least over 550. So, you really need to get more B12 as well as the B complex. Look for sublingual methylcobalamin 1000 mcg.

Sand11 profile image
Sand11 in reply togreygoose

Oh sorry my apologies

I will do that in future not write everything of test results

I was tested for my iron folate at the same time as my B12

Test results shown B12 and pernicious anemia deficiency

Advised to take ferritin once a day and B12 supplement once a day

I will defo look for sublingual methylcobalamin 1000 mcg and continue B12 with a B complex

It must of been how I wrote it . My doctor hasn’t advised me to stop taking supplement of B12

I haven’t spoken to he/ she in regards to my latest B12 results

I was thinking a head because it came back normal he/ she might advise myself to stop taking the supplement With it showing results normal

But I am going to follow your advise …

helvella profile image
helvellaAdministrator in reply toSand11

If they think you have pernicious anaemia, then they should be prescribing injections - not oral supplements.

While they are far from perfect, have a read of the NICE guidelines here:

Vitamin B12 deficiency in over 16s: diagnosis and management

NICE guideline [NG239] Published: 06 March 2024

nice.org.uk/guidance/ng239

And consider going to the Pernicious Anaemia Society forum.

healthunlocked.com/pasoc

Sand11 profile image
Sand11 in reply tohelvella

miscellaneous test results march 2024

Pathology Investigations

Miscellaneous antibodies

Parietal cell autoantibody level Positive Intrinsic factor antibody level Positive;

Gastric Parietal Cell antibodies and intrinsic factor

antibodies are associated with autoimmune gastritis and

Pernicious anemia but either can be negative in these

conditions. Suggest check FBC and Vitamin B12 if not

already done to assist diagnosis. Note Parietal Cell

antibodies can be seen in other autoimmune diseases

including thyroid disease, they are not specific to Pernicious anaemia.

This is how I read this test ?

yes I am aware taking vitamin C helps with absorption 😊

helvella profile image
helvellaAdministrator in reply toSand11

If you were positive for Intrinsic factor antibodies, then that is usually regarded as proof of pernicious anaemia.

If you also were positive for Gastric Parietal Cell antibodies, that ices the cake. But would not, on their own, be sufficient.

Other laboratory tests might be Mean Cell Volume (macrocytosis) and other tests in Full Blood Count. Homocysteine. Methylmalonic acid. But you should immediately be started on injections. Your folate needs checking and, possibly you would need to supplement somehow (there are several options). Your iron levels needs to be assessed. And a good idea to ensure you are getting a reasonable intake of potassium as that can drop in the early stages of treatment. But it doesn't need supplementation - just good dietary choices. :-)

And do visit the PAS people!

Sand11 profile image
Sand11 in reply tohelvella

Thank you I will request a repeat iron blood test to see what levels are

I took folate to deal with iron deficiency as per advice by my GP

Test took with folate and after, without taking supplements to the best of my knowledge , stated test on both occasions ; result were normal

I was advised , due to normal test results to continue -not taking iron -supplement….

helvella profile image
helvellaAdministrator in reply toSand11

Your B12 issues should have been treated before taking folate.

In some circumstances, folate supplementation can precipitate serious worsening of the impact of low B12. And it will tend to mask issues such as macrocytosis thus allowing B12 deficiency to be missed and have a greater impact.

greygoose profile image
greygoose in reply toSand11

Ah, but it doesn't show results normal! Far from it. Just because it's in-range doesn't mean it's good. The ranges are far too wide - especially for B12.

Ranges are not goals to aim for - something that doctors don't understand - they are just rough guides, showing you results found in the general population. And for each range you have to know where the result should fall to be more or less optimal, and it's different for all ranges. B12, for example, the range often starts about 100, but that would be a very dangerous level to have. You need your B12 over 550, whatever the range says. Below that you are at risk of permanent neurological damage. So, your B12 is still much too low.

And, if you have Pernicious Anemia (inability to retain B12) you need B12 injections for the rest of your life, not just pills. Have you been diagnosed with Pernicious Anemia?

But, even if your B12 level had come up to over 550, you wouldn't stop taking it because if you did, the level would just drop again. You just reduce the dose and keep on taking it. A B complex is usually considered to be a maintenance dose. But your B12 is so low that you need both the B complex and a separate B12.

So, what were your folate and ferritin levels?

Did anyone tell you to take vit C with your iron tablets? That is very important. Vit C helps with absorption and prevents the constipation that iron supplements sometimes cause.

SlowDragon profile image
SlowDragonAdministrator

You are currently very under treated

GP should immediately increase dose Levo to 75mcg every day

Which brand of Levo are you taking

Do you always get same brand

Retest again in 6-8 weeks

Remember to ALWAYS 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)

Vitamin levels

You need to test vitamin D

Aim to maintain at least over 80nmol

Can test via NHS private testing service

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.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Received: 03 Dec 2024

Serum vitamin B12 level 309 ng/L |211.0 -911.01)

B12 still far too low

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

In-depth article on different forms of B12

perniciousanemia.org/b12/fo...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

perniciousanemia.org/b12/le...

And why aiming to keep B12 over 500 recommended

perniciousanemia.org/b12/le...

Great reply by @humanbean on B12 here

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week

Post discussing different B complex

healthunlocked.com/thyroidu...

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

Sand11 profile image
Sand11 in reply toSlowDragon

Thank you information is so much appreciated

Same brand regular used for Levo : Accord brand

Will buy some B complex vitamin and look at vitamin D too

Thank you for your help…

SlowDragon profile image
SlowDragonAdministrator in reply toSand11

Get GP to agree increase in Levo too

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