Hypothyroidism Confusing test results. Can ... - Thyroid UK

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Hypothyroidism Confusing test results. Can anyone help please. Are they connected.

Moviegeek7 profile image
18 Replies

Hi Im hoping someone can help. The information you gave last time was very helpful but I still haven't recieved any help from the doctors as they didn't believe the test result were right.

They said something was going wrong at the lab but kept sending me back. So I recently paid to get a private test. I am seeing an endocrine specialist on friday but they were the ones saying the test was wrong. I have been having symptoms of low thyroid for a long time now.

I first got tested in December 2021. Only my T4 was low.

Here are the results of the test ive had :

Serum free T4 :

3/12/21 9.0 normal range 12.0-22.0

1/2/22 8.9 11.1-22.6

23/8/22 9.4 11.1-22.6

28/12/22 10.7 11.1-22.6

Thyroid peroxidase Auto-Abs

28/12/21 27.5 Normal range 0-34

TSH

3/12/21 3.06 Normal range 0.27-4.20

1/2/22 3.97

23/8/22 1.97

28/12/22 2.76

Serum free T3

23/8/22 3.9 Normal range 3.1-6.8

28/12/22 4.6

Here are some other abnormal results ive had:

Serum Cholesterol

23/8/22 7.51 Normal range 0-5.20

Serum Triglycerides

23/8/22 4.54 Normal range 0-2.26

Corrected serum Calcium

8/3/23 2.16 Normal range 2.20-2.60

Serum Calcuim

8/3/23 2.22 Normal range 2.20-2.60

Serum inorganic phosphate

8/3/23 0.87 Normal range 0.80-1.50

From the test results i had my T4 is low, my cholesterol is high and my calcium is low. My folate was low but is now ok.

I have added a picture of my private blood test results. Which shows im deficient in Vitamin D but also confirms that my T4 is low which the doctor didn't believe as my TSH and T3 are normal range.

I am very confused and frustrated.

Does anyone know if these test results are conected. Can low thyroid cause low Calcuim and vitamin D.

Thankyou Moviegeek 😊

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SlowDragon profile image
SlowDragonAdministrator

Previous post and replies here

healthunlocked.com/thyroidu....

Vitamin levels are all too low BECAUSE you are hypothyroid

Low vitamins tend to lower TSH so improving low vitamin levels is essentially

Only add one vitamin supplement at a time, then wait 10-14 days to assess before adding another

Vitamin D is deficient

Ferritin virtually deficient

B12 and folate too low, but not low enough for GP to prescribe

vitamin D

Take these results to GP,

GP should prescribe loading dose vitamin D over 6-8 weeks

That’s total of 300,000iu units.

5000iu per day for 8 weeks if self supplement

start with vitamin D

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 with Hashimoto’s, 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.

Likely to be at least 2000iu daily

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...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator

low B12 and folate

Are you vegetarian or vegan?

Do you have Low B12 symptoms 

If yes request GP do test for Pernicious Anaemia before starting any B12 or vitamin B complex. You may need B12 injections

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

Assuming GP doesn’t prescribe B12 injections

Improving low levels

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week 

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 

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...

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...

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) 

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay 

Other options 

healthunlocked.com/thyroidu....

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

SlowDragon profile image
SlowDragonAdministrator

Low calcium is directly linked to low vitamin D and calcium levels will improve as vitamin D levels increase

Low vitamin D directly linked to being hypothyroid

pubmed.ncbi.nlm.nih.gov/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

pubmed.ncbi.nlm.nih.gov/273...

Vitamin D insufficiency was associated with AITD and HT, especially overt hypothyroidism. Low serum vitamin D levels were independently associated with high serum TSH levels.

pubmed.ncbi.nlm.nih.gov/300...

The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.

ncbi.nlm.nih.gov/pmc/articl...

Our results indicated that patients with hypothyroidism suffered from hypovitaminosis D with hypocalcaemia that is significantly associated with the degree and severity of the hypothyroidism. That encourages the advisability of vit D supplementation and recommends the screening for Vitamin D deficiency and serum calcium levels for all hypothyroid patients.

High cholesterol directly linked too and will improve as your levothyroxine dose increases

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

SlowDragon profile image
SlowDragonAdministrator

Low ferritin (iron stores)

Are you pre or post menopause

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

medichecks.com/products/iro...

Look at increasing iron rich foods in diet 

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

List of iron rich foods

dailyiron.net

Links about iron and ferritin

An article that explains why Low ferritin and low thyroid levels are often linked 

preventmiscarriage.com/iron...

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin 

oatext.com/iron-deficiency-...

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...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin 

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron 

healthline.com/nutrition/he...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary 

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

Ferritin range on Medichecks 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

SlowDragon profile image
SlowDragonAdministrator

High CRP

This is measure of inflammation. Needs retesting by GP again in 6-8 weeks

High inflammation increases ferritin levels, so your ferritin levels might actually be lower

Insist on endo/GP doing full iron panel test for anaemia

High cortisol is directly linked to being hypothyroid. Adrenals try to compensate for lack of thyroid hormones and cortisol should slowly reduce as you get started on levothyroxine

Request ultrasound scan of thyroid

20% of Hashimoto's patients never have raised antibodies 

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

Gluten intolerance is often a hidden issue too.

Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Blood test for prolactin might be useful too

and MRI of pituitary

SlowDragon profile image
SlowDragonAdministrator

Standard starter dose levothyroxine is 50mcg

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

Avoid starting on Teva brand levothyroxine, unless you know/suspect you are lactose intolerant

Come back with new post after next test

Moviegeek7 profile image
Moviegeek7 in reply to SlowDragon

Thankyou SlowDragon For answering my question and sending so much information its really helpful.

I am seeing the endocrinologist tomorrow so I wanted to go as prepared as possible.

Is it possible for hypothyroidism to getting better by its self?

As when I last talked to the doctor she said seeing as it had gone up it looked like it was getting better. This was after telling me before all the other test had been tested wrong 😮‍💨😒.

I am 39 so it is possible I am premenopausal. I originally went to the Doctors thinking I was as I have been having night sweats for years.

I also have brain fog, fatigue, aching muscles and joints. I have to drag myself through the day. I first put this down to having 3 kids.

Ive had my iron levels checked earlier this month the results were all within normal range.

Serum iron

16.6 5.8-34.5

Serum transferrin

2.61 2.00-3.60

Serum TIBC

60.8 44.0-80.0

Percentage Iron saturation

27% 14-56%

Serum ferritin 61 13-150

Moviegeek7 profile image
Moviegeek7 in reply to Moviegeek7

Im not vegan or vegetarian but I have have gut problems for over 15 years. I was tested for ceoliac disease 12 years ago and it came back negative.

I still have a lot of gut problems and I do think I have gluten sensitivity and lactose intolerant.

Can Ceoliac disease cause problems with the thyroid?

Thankyou again for all your help

SlowDragon profile image
SlowDragonAdministrator in reply to Moviegeek7

No very unlikely it’s going to fix its self

Night sweats frequently linked to low B12

Extremely high percentage of us with autoimmune thyroid disease are/become gluten intolerant/dairy intolerant

Are you on strictly gluten free or dairy free diet

Moviegeek7 profile image
Moviegeek7 in reply to SlowDragon

No, I have tried in the past and seen an improvement in my gut problems. Unfortunately I ended up giving up.

Moviegeek7 profile image
Moviegeek7 in reply to Moviegeek7

Thankyou for answering all my questions. Hopefully after tomorrow I will have more of a plan and treatment 🤞

Jodypody profile image
Jodypody

Your T3 is at the lower end of in range and T4 is out of range plus TSH was on the higher end. This mirrors the test I had which was actually below on T3 which finally got me over the hurdle. If you can afford to go private , go private is my advice

Beads profile image
Beads

You need to get your doc to test your pituitary, make sure that’s working properly. I have no idea how they do this. But, it’s your pituitary that makes TSH, an under range T4 should have turned your pituitary full on making TSH, to stimulate the thyroid to make more T4.

helvella profile image
helvellaAdministratorThyroid UK in reply to Beads

The first stage of pituitary testing is to do several tests of the hormones that are usually produced by the anterior pituitary.

Adrenocorticotropic hormone

Thyroid-stimulating hormone

Follicle-stimulating hormone

Luteinizing hormone

Growth hormone

Prolactin

However, that only really helps if it shows something. If the results do not show a clear issue, it doesn't actually prove there is not an issue.

Beads profile image
Beads in reply to helvella

Thanks. I’m likely going to be going down this route if they try to reduce my dose/if I decide I need T3.

FSH, LH and prolactin: how relevant are these post menopause? And growth hormone, is that still considered in adults?

Sorry if I’m hijacking the thread.

helvella profile image
helvellaAdministratorThyroid UK in reply to Beads

Maybe have a look at this page?

Tests for pituitary conditions

Basic blood tests

Initially, your GP may perform some basic pituitary hormone function tests. The hormones that can be tested via a simple blood test include: cortisol, thyroid, prolactin, oestrogen, testosterone and growth hormone.

If the results returned were showing out of normal range and the GP agrees, a referral to an endocrinologist would be the next step for more thorough investigations.

pituitary.org.uk/informatio...

Beads profile image
Beads in reply to helvella

Thank you!

radd profile image
radd

Moviegeek7,

Oh poor you, you’ve had under range FT4 for years, and now low FT3. 

In normal thyroid physiology TSH has an inverse relationship with thyroid hormones. TSH is a pituitary hormone and the driver for the thyroid gland to produce more thyroid hormone. Central hypothyroidism is when a problem with the pituitary or its signalling means it does not produce TSH in response to low thyroid hormone.  

Your GP is looking only at your TSH which is the usual (blinkered/uneducated) approach for a GP to diagnose hypothyroidism, and is failing to consider your low amounts of thyroid hormone. GP’s think central hypothyroidism is rare and may not have even heard of it but we see it in some members here.

Your antibodies are negative further suggesting a pituitary-thyroid signalling problem, and regardless of what your TSH is doing, you require adequate thyroid hormones to retain wellbeing. You need some Levothyroxine which is the standard thyroid hormone replacement med. 

Thyroid tests can suffer interference altering results, but this has been eliminated by the consistency of your low results. Ask for a referral to an endo because you might need later pituitary investigations, and as your appointment could take so long, meanwhile you could ask that your GP seeks advice from an endo regarding replacement meds for you to start asap. You could even print off the link below for your GP which is NHS advice relating to central hypo.

It can be difficult to advocate for yourself when feeling rubbish but you have very blatant discrepancies in your thyroid results that once noted your GP should act upon.

SlowDragon has given you excellent advice re everything else. 

nhslguidelines.scot.nhs.uk/...

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