How Often should I test?: I got a good deal with... - Thyroid UK

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How Often should I test?

SETEHE profile image

I got a good deal with Thriva for a thyroid blood test. My mum, sister, aunt and grandmother all have underactive thyroids. I have been experiencing anxiety and tiredness for the past 6 months, so thought I would get a test. All normal, the tiredness is coming from low Vitamin D. I’ve been reading posts on this board and appreciate all your knowledge.

B12 Active - 104 pmol/L (37.5-188)

Ferritin 58.3 ug/L (13-150)

Folate 10.2 nmol/L (8.83 - 60.8) was within normal range, 40-60 is optimal

Thyroid

FT3 - 5.42 pmol/L (3.1-6.8)

TSH - 3.65 mIU/L (0.27 - 4.3)

TgAB- 14.3 kU/L ( 0 -115)

TPOAB - 16.3 kIU/L (0-34)

T4 - 103 nmol/L (66-188)

FT4 - 16.8 pmol/L (12-22)

Vit D - 27.3 nmol/L (50-175)

So my question.......

With my family history of thyroid problems, how often should I retest?

Every couple of years?

19 Replies
SeasideSusie profile image
SeasideSusieAdministrator

SETEHE

brackets are the dark green ‘optimal results’

That doesn't mean much when we can't see a picture of it, I'm afraid. And "optimal" is different for everyone, it's very individual where we each feel optimal.

So what is the actual range, usually the whole of the green bar and not just the "optimal" bit. For example, the range for FT4 will be 12-22 (I think it's the same as Blue Horizon and Medichecks range).

You can either edit your opening post and add the picture or you can post the range with your result.

Only the vitamin D needs looking at.

Yes, it definitely does, in fact I'd show that to your GP and ask if he's willing to prescribe loading doses as you are very close to Vit D deficiency which is diagnosed when level is <25nmol/L. If GP wont prescribe, come back and I can work out what you will need to take and also tell you the important cofactors needed when taking D3.

Your ferritin is also on the low side and that can be improved by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet

apjcn.nhri.org.tw/server/in...

Your Active B12 is OK and folate is recommended to be at least half way through range so a good B Complex is needed there, eg Thorne Basic B or Igennus Super B.

SETEHE profile image
SETEHE in reply to SeasideSusie

Got it!! Amended the ranges.

Thank You. I’ll get booked into the GP regarding the Vitamin D. See what he suggests.

Thank You for your other advice too, i’ll Take a look at that article tonight.

I guess I’m thinking I will have thyroid problems as most the woman in my family will but maybe I won’t. Glad to have found out about the vitamin D.

SeasideSusie profile image
SeasideSusieAdministrator in reply to SETEHE

That's great, thanks.

So, as mentioned, Active B12 is OK, folate is very low in the range so do consider either Thorne Basic B (my choice) or Igennus Super B and that will raise your folate and maintain, maybe even raise B12. Also look at folate rich foods. Ferritin should be increase over time with liver, etc.

Do come back and tell us what your GP says about your Vit D. If he offers you 800iu or 1,000iu D3 then that wont help at all, you need much, much more than that. The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends 100-150nmol/L so that should be your aim (regardless of what your GP says!).

Thyroid

TSH - 3.65 mIU/L (0.27 - 4.3)

Here is a graph showing the TSH level of normal healthy people

web.archive.org/web/2004060...

You will see that most people without any thyroid problems will have a TSH level of around 1, certainly no more than 2, so your TSH level is high in it's range and in some countries hypothyroidism is diagnosed when TSH reaches 3. Here in the UK our doctors tend to mostly be sadists and make us wait until it reaches 10.

FT4 - 16.8 pmol/L (12-22)

Most normal healthy people without a thyroid problem will have FT4 around mid-range, maybe a bit higher. Yours is 48% through range.

FT3 - 5.42 pmol/L (3.1-6.8)

Your FT3 is 54% through range so you are making a good amount of T3 at the moment (T4 is a storage hormone which converts to T3, T3 is the active hormone which every cell in our bodies need).

T4 - 103 nmol/L (66-188)

This is Total T4 and not a particularly useful test, the Free T4 (FT4) is the more useful test as it tells us the amount of free (unbound) T4 that is available to be taken up by the cells.

TgAB- 14.3 kU/L ( 0 -115)

TPOAB - 16.3 kIU/L (0-34)

These results are negative for autoimmune thyroid disease. However, antibodies do fluctuate so it's possible that a future test may show a different result. If you had over range antibodies with an over range TSH (not necessarily reaching 10) then that would indicate possible future hypothyroidism and an enlightened doctor would hopefully start you on Levo.

I think at the moment, concentrate on Vit D (do come back and say what's happening and I will elaborate on what else you need to take with D3 and the importance of future testing), and folate levels.

As for retesting your thyroid, I would suggest doing this in 6 months' time when the supplements will have had time to improve your nutrient levels (don't forget the liver for ferritin level). You need to keep an eye on that TSH and if it continues to rise then you may be heading towards hypothyroidism.

When doing thyroid tests, we advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure (which most labs do) it can give false results.

These are patient to patient tips which we don't discuss with doctors or phlebotomists

SETEHE profile image
SETEHE in reply to SeasideSusie

Wow thank You. This is fantastic.

I've booked in with the GP for Friday, so we will see what is suggested.

I really do appreciate the advice.

SETEHE profile image
SETEHE in reply to SETEHE

1000iu vit D to be taken per day.

I have to pay for prescription so he’s recommended I source my own as it’s cheaper.

He’s added a reminder on my record to come in for repeat thyroid test in 6 months time.

SeasideSusie profile image
SeasideSusieAdministrator in reply to SETEHE

SETEHE

Vit D - 27.3 nmol/L (50-175)

1000iu vit D to be taken per day.

OK, so refer back to my previous post where I said:

"Do come back and tell us what your GP says about your Vit D. If he offers you 800iu or 1,000iu D3 then that wont help at all, you need much, much more than that. The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends 100-150nmol/L so that should be your aim (regardless of what your GP says!)."

Your GP has suggested exactly what I thought, a minimal amount which wont raise your level, 1000iu D3 daily is barely a maintenance dose for someone with a decent level already. You are barely above Vit D Deficiency level so need much more.

To reach the recommended level from your current level, based on the Vit D Council's suggestions you could supplement with 5,000iu D3 daily.

Retest after 3 months.

Once you've reached the recommended level then you'll need a maintenance dose 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. You can do this 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 as recommended by the Vit D Council

vitamindcouncil.org/about-v...

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.

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 tablets/capsules/softgels, no necessity if using an oral spray.

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. 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 tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.html

D3 tablets and capsules aren't very well absorbed. For best absorption go for oil based softgels, eg Doctor's Best which only contains 2 ingredients - D3 and extra virgin olive oil - (widely available on the internet, cheapest I have found is Dolphin Fitness). Some people like an oral spray, eg BetterYou, this is absorbed via the mucous membranes in the oral cavity, this form is more expensive than the softgels and contains quite a few excipients.

Vit K2-MK7 also comes in oil based softgels for good absorption.

Don't start all supplements at once, start with one, give it a week or two and if no adverse reaction then add the next one. Continue like this, if you do have any adverse reaction then you will know what caused it.

SETEHE profile image
SETEHE in reply to SeasideSusie

Thank You. Taken note and it looks like I have a lot to research.

Really useful, thank you for taking the time to help.

SETEHE profile image
SETEHE in reply to SETEHE

The GP said my Vitamin D was low 10 years ago, which is why my parathyroid gland was tested. I think it must have returned to normal, as we had full bloods taken with both pregnancies with no feedback.

I’ve just signed up to NHS SystmOne and can see all my previous bloods online. Just not my pregnancy ones. So going forward any NHS blood tests I can research the results myself. Rather than taking ‘they are fine’ for an answer

SlowDragon profile image
SlowDragonAdministrator

Vast majority of hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies

Likely this is the cause of your relatives hypothyroidism

Currently your antibodies are negative.

But 20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

If you feel thyroid is swollen or lumpy now, or in future...ask for thyroid ultrasound

SETEHE profile image
SETEHE in reply to SlowDragon

Thank You. That actually makes sense.

It feels fine at the moment but I will definitely keep an eye out.

SlowDragon profile image
SlowDragonAdministrator

Maintaining good vitamin D after you improve levels may help against possibly developing Thyroid issues

GP should ideally prescribe loading dose of vitamin D. Result is only just above deficiency of 25nmol

Local CCG guidelines

clinox.info/clinical-suppor...

ncbi.nlm.nih.gov/pubmed/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.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

SETEHE profile image
SETEHE in reply to SlowDragon

Sorry I missed this response. I really appreciate it. My GP recommended 1000iu vitamin D per day, I wish I had seen this prior to my appointment. I wonder why the GP didn’t recommend more.

SlowDragon profile image
SlowDragonAdministrator in reply to SETEHE

Suggest you get yourself some vitamin D mouth spray at 3000iu. Better You make two options widely available online

Get levels retest in 3-4 months

vitamindtest.org.uk

Read posts online to learn about importance of good vitamin levels

SETEHE profile image
SETEHE in reply to SlowDragon

Thank you

SEETHE, As others have pointed out, your TSH is a bit high. This stands for Thyroid Stimulating Hormone, and is a chemical messenger made in the pituitary to tell the thyroid to make more hormone.

A healthy person will have a TSH between about 0.8 and 2. Yours is quite a bit beyond that, which means there is a very tiny chance a person with a healthy thyroid would have a result like yours.

My own personal cut off for where we can be fairly sure there is a thyroid problem is 2.5. Your thyroid is almost certainly struggling right now.

Unfortunately doctors will want it to get quite a bit worse before they will be willing to diagnose you.

Looking at your freeT4 and freet3, which show how much thyroid hormone is in your blood, these are still in the healthy zone, around the middle of the range. This is common in the early phases of thyroid illness, as your body pulls out all the stops to keep things as stable as it can.

A couple of very low vitamin levels may be caused by your thyroid, as being hypothyroid trashes vitsmins. Getting those improved should make you feel a bit better in the short term.

At the moment you're in a difficult position :( Your tiredness will be caused by a combination of low vitsmins and your struggling thyroid. But doctors will be resistant to treating you, so you may have a long wait to get worse until you will be treated.

You ask how soon to retest, it's partly a balance of money vs impatience. Something like every two or three months will give you some possibly useful data, as you will see if your thyroid is getting worse or remaining more stable. But if that sounds a bit pricey in 6 months to a year is probably enough to keep tabs on your thyroid. Everything in thyroid health moves at a very slow pace, so it could easily be a few years if you go down the NHS route.

If you were close friend of family of mine my advice would probably be to monitor fairly closely for a year or two. And be prepared to buy your own thyoid hormone and self medicate after that time depending on how things pan out. I hear so many sad stories on the forum of people being sick for years waiting to get treatment :(

SETEHE profile image
SETEHE in reply to SilverAvocado

Thank you. This is really hard to read. I think in the short term I will work on getting my other levels, ferritin, vitamin D in check. Money really isn’t a problem, I do have a lot of disposable income. I think every 6 months makes sense, then if I see a bit change, I can test more often.

Is it 10 the TSH needs to get to before a UK GP will diagnose?

My GP is supposedly an expert in thyroid issues, yet he said my TSH is nothing to be worried about.

It’s all very frustrating.

SilverAvocado profile image
SilverAvocado in reply to SETEHE

Doctors tend to be really really dire on thyroid issues :( A doctor who claims to be a thyroid expert may be a little bit better, but probably won't be great and may be just as bad as any other. You're in a particularly difficult situation where almost nobody will get good help from a doctor, because you are kind of in that gap between good health and meeting the criteria for diagnosis.

The point where a GP will diagnose you is quite dependent on the opinion of the GP. 10 is hopefully the absolute worst cutoff point, some will diagnose when it gets outside the reference range, very rarely you might be able to get a diagnosis with lower levels. There is definitely value in being a squeaky wheel and visiting your GP regularly, as they tend to base their view only on what they see with their own eyes (in terms of a history of symptoms), and are much more likely to diagnose and treat when it's giving them hassle not to!

As long as cost isn't a barrier, it would be good to get a retest in maybe two months, then maybe two after that, and depending on what you see then going down to every 6 months. Hashimoto's, which is what you're most likely to have is a progressive illness and it's good to get a sense of how it is going. Although I tend on the side of being pretty cautious and systematic, so you may disagree!

Sorry to have been the bearer of bad news, hopefully it will be some use to you! I advise you to stick around and read the forum regularly, it is a mine of information.

SETEHE profile image
SETEHE in reply to SilverAvocado

Thank you.

And I think I have a lot to learn from you guys. I will be following the forum and the posts. It is very interesting.

I got tested at the Gp surgery and only TSH was tested and vitamin D

Vitamin D was great!! So thank You for your help, I’m over the moon. It was 140 nmol/L - so m going to adapt and lower my Vit D supplement

January - TSH - 3.65 mIU/L (0.27 - 4.3)

May - TSH - 9.74 mIU/L (0.27 - 4.3)

The Dr says I don’t fall in the range to receive help yet. I’m tempted to purchase another blood test online to get a full overview of what is happening. It feels pointless that the GP is unwilling to help.

He wants a further test in 6 months.

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