Need advice on how to get a proper diagnosis

[Rovers98]

I've suffered from extreme fatigue & depression for many months. Due to family history of hypothyroidism I went for private testing. REsults were: Low normal TSH, low FT4, low normal FT3 and very high Anti-Tg. All pointing to Hashimotos. Went to my GP who then had TSH, FT4 and FT3 and told me all were in normal range & discounted private lab results. Put me on a course of vitamins & blood pressure med. 6 weeks on my symptoms are exactly the same. Any advice on what I should do next would be very welcome. thank you.

[SeasideSusie Remembering]

Rovers98

If you can add the test results from both sets of tests, with their reference ranges, we will be able to offer better suggestions than without seeing the actual results. Exactly how low the FT4 level is may be crucial to diagnosis.

What vitamins were you prescribed - were any tests done, if so what and the results/ranges?

Presumably your blood pressure was high? Were you prescribed blood pressure meds on the strength of just one reading?

[Rovers98 in reply to SeasideSusie]

many thanks. Private test results

TSH 1.0 mIU/l FT4

FT4 10.5 pmol/l

FT3 3.7 pmol/l

Anti-Tg 512 IU/ml

GP didn't give me actual results just said they were 'normal'.

Folic acid & vit D prescribed.

Blood pressure taken over 24 hours (was ~160/95)

[SlowDragon Administrator in reply to Rovers98]

GP didn't give me actual results just said they were 'normal'.

Folic acid & vit D prescribed.

So you need to get hold of the actual results of vitamin D, folate, ferritin and B12

Low vitamin levels tend to lower TSH

Low vitamin levels are extremely common when hypothyroid due to low stomach acid, these leads to poor nutrient absorption and low vitamin levels as direct result

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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

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

High TG antibodies likely confirms autoimmune thyroid disease, though you can have high TG antibodies due to Pernicious anaemia

NHS won’t diagnose autoimmune thyroid disease on just high TG antibodies

High TG antibodies can cause lots of symptoms

pubmed.ncbi.nlm.nih.gov/303...

[SeasideSusie Remembering in reply to Rovers98]

Rovers98

We need reference ranges to be able to interpret these, ranges vary from lab to lab. Your private tests will have the ranges alongside the results. for the GP tests ring and ask the receptionist for a print out if you don't have online access to results.

Folic acid & vit D prescribed.

So presumably these were tested. Folate must have been deficient to have folic acid prescribed, presumably 5mg?

How much Vit D prescribed and for how long - it's really important to know the result of this test because GPs often prescribe too little and there is a recommended level to aim for and once you've reached this level you need to find a maintenance dose which you will have to buy yourself.

Were Ferritin and B12 also tested?

Blood pressure taken over 24 hours (was ~160/95)

Was this at home? I had to do daily testing, 3 times a day for a week to ensure it wasn't a one off.

[Rovers98 in reply to SeasideSusie]

many thanks. Normal ranges quoted below

TSH: 0.4 - 4.0 mUI/l

FT4: 11.5 - 22.7 pmol/l

FT3: 3.1 6.8 pmol/l

Anti-Tg: >115 IU/ml

Folic acid: my value was 2.4ug/l, normal range quoted : 3.8 - 26.8 ug/l

B12 : my value was 431 ng/l, normal range quoted 197 -771 ng/l

Iron: my value was 15.6 umol/l, normal range quoted 5.8 - 34.5 umol/l

Vit D: my value was 45nmol/l, normal range quoted 75 - 200 nmol/l

[SeasideSusie Remembering in reply to Rovers98]

Rovers98

TSH 1.0 (0.4 - 4.0)

FT4 10.5 (11.5 - 22.7)

FT3 3.7 pmol/l ( 3.1 6.8 pmol/l)

Anti-Tg 512 IU/ml (>115 = positive)

Have you had below range FT4 before?

Although your high Tg antibodies could mean Hashi's, your other results could possibly suggest Central Hypothyroidism which is where the problem lies with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism), both of which come under the umbrella term of Central Hypothyroidism.

With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low/below range.

TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

In Primary Hypothyroidism, which is where the thyroid fails, the TSH will be high.

However, with Central Hypothyroidism the signal isn't getting through for whatever reason so the message isn't getting through to the thyroid to produce hormone, hence low FT4. It could be due to a problem with the pituitary or the hypothalamus.

As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before.

Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed:

bestpractice.bmj.com/topics...

and another article which explains it:

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

and another here:

endocrinologyadvisor.com/ho...

and another one:

academic.oup.com/jcem/artic...

You could do some more research, print out anything that may help and show your GP.

You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email ThyroidUK at

[e-mail]

for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.

Please note that I am not medically qualified and I am not diagnosing, merely pointing out the possibility that Central Hypothyroidism might be involved due to these results.

Folic acid: my value was 2.4ug/l, normal range quoted : 3.8 - 26.8 ug/l

So this is folate deficiency and presumably your GP has prescribed folic acid at 5mg daily and will be monitoring you.

B12 : my value was 431 ng/l, normal range quoted 197 -771 ng/l

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

So you might want to consider improving this level. You could take some sublingual B12 whilst taking the prescribed folic acid. Folic acid is usually a short term medication so when that stops I would then stop the B12 (your level should have risen) and then buy a good quality B Complex which should maintain your folate level and your B12. My preference is Thorne Basic B. If you look at different brands then look for the words "bioavailable" or "bioactive" and ensure they contain methylcobalamin (not cyanocobalamin) and methylfolate (not folic acid). Avoid any that contain Vit C as this stops the body from using the B12. Vit C and B12 need to be taken 2 hours apart.

When taking a B Complex we should leave this off for 3-7 days before any blood test because it contains biotin and this gives false results when biotin is used in the testing procedure (which most labs do).

Iron: my value was 15.6 umol/l, normal range quoted 5.8 - 34.5 umol/l

This is on the low side. Serum iron should be 55-70% through range (higher end for males) and yours is 34%. Did you have a full iron panel which included transferrin saturation, total iron binding capacity and ferritin as well?

Vit D: my value was 45nmol/l, normal range quoted 75 - 200 nmol/l

How much D3 has your GP prescribed? I'm guessing 800iu or 1,600iu?

The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L.

To reach the recommended level from your current level, you really should be supplementing with 5,000iu D3 daily but your GP wont know this, they're not taught much about nutrients at medical school and the guidelines don't suggest this amount.

Retest after 3 months.

Once you've reached that level then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.

D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc. 90-100mcg K2-MK7 is enough for up to 10,000iu D3.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.

For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.

If looking for a combined D3/K2 supplement, this one has 3,000iu D3 and 50mcg K2-MK7. The company has told me the K2-MK7 is the Trans form

natureprovides.com/collecti...

It may also be available on Amazon

Magnesium helps D3 to work. We need magnesium so that the body utilises D3, it's required to convert Vit D into it's active form, and large doses of D3 can induce depletion of magnesium. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

Optimising key nutrients may help, especially iron/ferritin as low levels can cause fatigue. I'd need to see results for full iron panel to know if you had iron deficiency, just your serum iron on it's own isn't showing deficiency but is showing a low level.

[Rovers98 in reply to SeasideSusie]

many thanks for all this information and advise, I am very grateful. I will read through all of this very carefully and also will try and track down a suitable endocrinologist in the region where I live (Northern Ireland).

[SlowDragon Administrator]

Important to test folate and B12 levels together

Often if folate is low, B12 will be too