Time to Change: After 16 years with the same GP... - Thyroid UK

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Time to Change

Madebyme profile image
20 Replies

After 16 years with the same GP Practice, I think it’s time to change as I never get the tests I request. My latest results are:

TSH. 0.59 (0.27 - 4.2) No further action

T3 & T4 not tested even though I asked.

B12 352. (197 - 771)

Folate 7.7 (3.0 - 20)

Ferritin 197 (13 - 150) Raised ferritin? Liver problem? Outside normal range. Result Borderline, No further action.

Haemoglobin A1c level IFCC standardised 39 mol/mol. Providing none of the exclusion criteria are met, HbA1c of 48mmol/mol or greater do not exclude diabetes. Result Normal.

iron level 16umol,L (11.0 -25.0)

Unsaturated iron binding capacity 60unmol (44.0 -71.0)

Transferrin saturation index 27% (20.0 -50.0) No further action.

Your comments would be appreciated.

Thank you.

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Madebyme profile image
Madebyme
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20 Replies
Buddy195 profile image
Buddy195Administrator

Hi Madebyme,

A couple of months ago you posted results of a private test & noted you were still taking 100mcg of Levothyroxine:

TSH. 0.04 (range. 0.27 - 4.2)

FT3 5.53. (range 3.1 - 6.8)

FT4 22.7. (range 12 - 22)

Just checking, did you follow advice given in your previous post by SlowDragon to improve folate and vitamin D?

Madebyme profile image
Madebyme in reply to Buddy195

I discussed the private test with my doctor who the reduced my tabs to 75mg and told me to retest after 2 months. Have been taking Vitamin D but that didn’t get tested this time. Blood draw was before 9 am with no Levo taken for 24 hours prior to test.

Buddy195 profile image
Buddy195Administrator in reply to Madebyme

Sometimes laboratories ignore GP requests to test FT3 and FT4 if TSH is within range, even if requested by a GP. This has happened to me several times and the reason why I test levels privately. Unfortunately, if you move GP surgeries, there is no guarantee that they will test everything you request either. It’s a bit of a lottery.

How are you feeling on the reduced dose? If you are still having adverse symptoms, could you increase to 87.5mcg? (I find a pill cutter invaluable for making small dosage increases)

I have successfully improved my folate and B12 using a good B Complex (I use Thorne Basic B).

Madebyme profile image
Madebyme in reply to Madebyme

I don’t feel too bad on the reduced amount and will try your recommendation of Thorne Basic B. Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to Madebyme

Many people find different brands levothyroxine are not interchangeable

Which brand of levothyroxine are you currently taking?

You’re likely to see Ft3 level fall with dose reduction in levothyroxine

Recommend getting TSH, Ft4 and Ft3 tested 10-12 weeks after any dose reduction

Acid reflux and bloating are common hypothyroid symptoms. They may increase with dose reduction in levothyroxine

SlowDragon profile image
SlowDragonAdministrator

healthunlocked.com/thyroidu...

Previous post with old results

What vitamin supplements are you currently taking

B12 and folate still too low

You need vitamin D tested

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

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

Only do private testing early Monday or Tuesday morning. Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Ferritin

Are you pre or post menopause?

Higher ferritin common after menopause

High ferritin can be due to inflammation as well

Madebyme profile image
Madebyme

I’m taking 1000iu of Vit D, 500mg of Bit C and I take Actimel everyday.

I’ve stopped taking Proton inhibitors as they didn’t help with indigestion/ heartburn/reflux symptoms. The symptoms I present and have presented for the last 3 years is discomfort in my chest and neck. Have had ECG and chest X-ray which are normal.

I don’t take iron supplements, so am concerned about high Ferritin, I am 70 years old, so well passed menopause. The previous private test threw up a marker of inflammation and now the recent test is showing a high reading questioning liver. I really would like to know why this is high and higher than the last test test, but they don’t do anything about it.

SlowDragon profile image
SlowDragonAdministrator in reply to Madebyme

vitamin C will be increasing iron absorption

Ferritin after menopause- more realistic range is 15-400

High ferritin levels can be deceptive with inflammation. It’s possible to have high ferritin and low iron

other iron tests show iron isn’t high

Vitamin D

Very unlikely 1000iu is high enough

Test twice year when supplementing. Aiming for vitamin D at least over 80nmol and over 100nmol might be better

Are you also supplementing magnesium or vitamin k2?

SlowDragon profile image
SlowDragonAdministrator in reply to Madebyme

low folate and low B12

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 

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 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 methyl folate supplement and continue separate B12

Low B12 symptoms 

b12deficiency.info/signs-an...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

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

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

How other member saw how effective improving low B vitamins has been 

healthunlocked.com/thyroidu...

Madebyme profile image
Madebyme in reply to SlowDragon

I’ve just bought Magnesium Citrate 650 mg, but they are such big capsules I will have a difficulty swallowing them, is it ok to break open and take the powder? I will definitely but some Thorne Basic B. You have given me a lot to read here, will stop taking Bit C. Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply to Madebyme

Just crush magnesium up if it’s a tablet

If capsule, open it and tip powder into half a cup of water

Anthea55 profile image
Anthea55 in reply to Madebyme

I really wouldn't break open capsules and take the powder. I knew an elderly lady who did that and ended up with cancer of the throat.

I wonder if it might be safer to dissolve the powder in water and swallow it. Someone else might know. Next time see if you can buy something different.

SlowDragon profile image
SlowDragonAdministrator in reply to Madebyme

Come back with new post once you get vitamin D result

Previous result was 37nmol

NHS Guidelines on dose vitamin D required

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

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

Some areas will prescribe to bring levels to 75nmol or even 80nmol

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...

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

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

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing 

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...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

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

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

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...

Great article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

shaws profile image
shawsAdministrator

I think your B12 is on the low side and would request GP to double-check it to exclude you don't have pernicious anaemia and, if you did, you'd have to have frequent B12 injections.

I also have P.A. and if we have one autoimmune condition we can develop others. I have a monthly B12 injection as my GP stated I could have as many as I feel 'I need'. The usual replacement is quarterly.

Madebyme profile image
Madebyme in reply to shaws

Having got a ferritin level, I assumed I couldn’t be anaemia, so are you saying this might not be the case?

SeasideSusie profile image
SeasideSusieRemembering in reply to Madebyme

Madebyme

Pernicious anaemia (PA) is nothing to do with iron. PA is an autoimmune condition whereby you can't absorb B12, so it is one cause of B12 deficiency. Shaws said she thinks your B12 is on the low side and suggested you ask your GP to do further testing to see if you had B12 deficiency and to rule out PA. You can check signs/symptoms of B12 deficiency here and if you have any list them to discuss with your GP to support your request for further testing:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

Because your iron panel shows no sign of high serum iron or saturation, your raised ferritin is more likely to be caused by inflammation. What was the result of the inflammation marker test?

Madebyme profile image
Madebyme in reply to SeasideSusie

The doctor hasn’t commented on the inflammation marker, but when I look back on previous tests it has got higher each time. Time for a further chat to him I think.

shaws profile image
shawsAdministrator in reply to Madebyme

I am not medically qualified but the following link might be informative.

medichecks.com/blogs/news/w...

jimh111 profile image
jimh111

It's not the fault of the GP. The hospitals decide what tests to run and overrule the GPs, so another GP will have the same problem. In most cases the assay machine has automated algorithms that run fT3 if TSH is very low and fT4 if TSH is high. The operator has to manually override the machine to test TSH, fT3, fT4.

You need to complain to the hospital that runs the assay. They can then come to an arrangement with the GP to run all three tests as a special request.

Madebyme profile image
Madebyme in reply to jimh111

Ok, thanks for that, I suppose if you are not getting the results you ask for it’s quick to blame the GP, I assumed the hospital tested for the tests they are asked to test.

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