Advice with my blood results, and what to do next - Thyroid UK

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Advice with my blood results, and what to do next

ks-l1977 profile image
12 Replies

Hi Everyone,

I was diagnosed with hypothyroidism Hashimoto about 5 years ago; and prescribed 75 micro-grams of Levothyroxine (TEVA). On a few occasions, I asked my GB for referral to Endocrinologist but was refused and told that in the UK, GPs monitor thyroid conditions. I am worried that even though, I am on medication, I got certain symptoms that don’t seem to be going away, but they are getting worse. They are like feelings of being depressed, mood swings, and very strong hair loss. Therefore, I decided to look for help elsewhere, and found this amazing forum. I did my very first private blood test and would appreciate if anybody could help me with interpretation of my results; and could suggest any sort of supplements that I could take to make my thyroid behave a bit better.

These are my results:

-Inflammation CRP HS - 0.33 mg/L (0 < 5)

-Ferritin - 116 ug/L (13 – 150)

-Folate Serum - 5.06 ug/L (3.89 – 19.45)

-Vitamin B12 Active - 44 pmol/L (37.5 – 187.5)

-Vitamin D – 65.6 nmol/L (50 -175)

-TSH – 5.48 mIU/L (0.27 – 4.2)

-Free T3 – 4.59 pmo/L (3.1 – 6.8)

-Free T4 – 15.3 pmo/L (12 – 22)

-Thyroglobulin Antybodies 40 kIU/L (0 – 115)

-Thyriod Peroxidase Antybodies – 62.1 kIU/L (0 – 34)

Also, are there any probiotics lactose free that I could take? I understand that, we can’t discuss brands on the forum, but if it is possible to send me private message please.

Thank you so much in advance for your help!!

Stay safe!

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12 Replies
fuchsia-pink profile image
fuchsia-pink

Welcome to the forum.

Well I'm not surprised you feel miserable - you are horribly under-medicated. Once you are on levo your TSH should come down to less than 2 - and probably less than 1, with free T4 and free T3 in the top third of the lab range. Your free T4 is a pretty feeble 33% through range and free T3 a bit better at 40.27%. Can you ask your GP to increase your meds by 25 mcg a day, and re-test in 8 weeks?

At the same time, your nutrients need a bit of work ... I will defer to SeasideSusie and SlowDragon - but I would say that ferritin is ok but folate B12 and vit D all look low to me

ks-l1977 profile image
ks-l1977 in reply to fuchsia-pink

Hi Fuchsia-pink,Thank you for your speedy reply, and your advise. I will try to get GP appointment asap. In the mean time will wait for some more advise regarding my vitamins :-)

Lalatoot profile image
Lalatoot

I agree with the advice fuchsia pink has given.

ks-l1977 profile image
ks-l1977 in reply to Lalatoot

Thank you!

JAmanda profile image
JAmanda

I think NICE guidelines say that if your symptoms are not addressed with meds, you should be referred to an Endo. You are awfully under medicated as has been said above - why not ask for Dr's 'support' to try to reduce symptoms by their giving you an extra 25 mcg while you wait for Endo appt. retest in 6 weeks then ask for 25 more. I d say to doc 'as you know... so long as 'we' keep my T3 and t4 within the ranges, there should be no risks " etc pile it on! The impact on your working life, relationships etc. X

ks-l1977 profile image
ks-l1977 in reply to JAmanda

Thanks JAmanda. I appreciate your advise. I will request from my GP to increase my medication and insist an appointment to see Endocrinologist. Fingers crossed! X

SeasideSusie profile image
SeasideSusieRemembering

ks-l1977

-Ferritin - 116 ug/L (13 – 150)

Ferritin is good.

-Folate Serum - 5.06 ug/L (3.89 – 19.45)

Folate is recommended to be at east half way through range so 12+ with that range.

-Vitamin B12 Active - 44 pmol/L (37.5 – 187.5)

Active B12 below 70 suggests testing for B12 deficiency according to Viapath at St Thomas' Hospital:

viapath.co.uk/our-tests/act...

Reference range:>70. *Between 25-70 referred for MMA

There is a link at the bottom of the page to print off the pdf to show your GP.

Do you have any signs of B12 deficiency – check here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.

I wouldn't be surprised if you need B12 injections.

Once the B12 has been addressed and you have commenced injections or supplements, then a couple of weeks later introduce a good quality, bioavailable B Complex such as Thorne Basic B or Igennus Super B, this will help raise your folate level.

We need a B complex when supplementing with B12 as this is needed to keep all the B vitamins in balance.

Always leave B Complex off for 7 days before any blood test as it contains Biotin and this can give false results when Biotin is also used in the testing procedure (which most labs do).

-Vitamin D – 65.6 nmol/L (50 -175)

The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L.

To reach the recommended level from your current level, you could supplement with 3,000-4,000iu 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.

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 D3 as tablets/capsules/softgels, no necessity if using an oral spray.

I like Doctor's Best D3 softgels as they contain just two ingredients - D3 and extra virgin olive oil to aid absorption. Some members like BetterYou oral spray, I don't because it contains lots of excipients.

For K2-MK7 I like Vitabay or Vegavero brands.

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

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.html

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. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.

-TSH – 5.48 mIU/L (0.27 – 4.2)

-Free T3 – 4.59 pmo/L (3.1 – 6.8)

-Free T4 – 15.3 pmo/L (12 – 22)

You are very undermedicated. The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges. You need an immediate increase of 25mcg Levo, retest in 6-8 weeks. Repeat until your levels are where they need to be for you to feel well.

You can use the following information in support of your request for an increase in dose:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

print it and highlight question 6 to show your doctor.

Also, SlowDragon frequently posts this link with the following information in relation to TSH level:

gponline.com/endocrinology-...

Under the section

Cardiovascular changes in hypothyroidism

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

-Thyroglobulin Antybodies 40 kIU/L (0 – 115)

-Thyriod Peroxidase Antybodies – 62.1 kIU/L (0 – 34)

These confirm that you have Hashimoto's.

Also, are there any probiotics lactose free that I could take? I understand that, we can’t discuss brands on the forum, but if it is possible to send me private message please.

There's no problem with discussing brands on the forum. I'm afraid I can't recommend any probiotics, there are many different types which do different jobs so maybe do some research before you buy.

ks-l1977 profile image
ks-l1977 in reply to SeasideSusie

Hi SeasideSusie, THANK YOU so much for your detailed reply. I had my telephone consultation with GB this morning, and was prescribed top up dose of levothyroxine so in total I will be taking 100 mcg . We also agreed, that then I will repeat blood test after 8 weeks, and see the results.In regards to Vit B12 the GP was saying, 'oh well it's still within the range, and nothing stops you from taking a supplements for now' . Which I all understand but, I want to get to the bottom of the problem first, otherwise I might start masking it without knowing what is causing it. Therefore, will make another appointment this week specifically, for the Vit B12 consultation!

tattybogle profile image
tattybogle

well the most glaringly obvious problem is this

-TSH – 5.48 mIU/L (0.27 – 4.2) --not even in range. let alone optimally treated.

Even the worst doctor should be able to see that they are supposed to treat you to get Thyroid Stimulating Hormone in range.

TSH is a message from the pituitary to the thyroid asking it to make more or less thyroid hormone, or if your thyroid has become unable to respond adequately it's a message to the doctor to increase the prescription.

A low number like 0 = "enough already" and a high number like 10 ="make more, quick"

This is what healthy TSH levels look like ...

healthunlocked.com/thyroidu...

as you can see most common is under 2 , and quite often people on Levo need it under 1 before they feel anything like well.

Show this result to GP, but it is possible they will insist on doing their own test to confirm the level. If they ask you to get another thyroid test done it is important that you get an early morning blood test. The TSH varies naturally through the day, it is highest in the middle of the night , and falls to it's lowest around 2 pm,

Take last dose of levo the morning of the day before the test, and then take that day's dose after the test.

" I asked my GB for referral to Endocrinologist but was refused and told that in the UK, GPs monitor thyroid conditions."

Well ... that would be fine it they did it properly , but if they were doing it properly your TSH would not have got to anywhere near 5.....

SlowDragon profile image
SlowDragonAdministrator

Are you taking Teva levothyroxine because you are lactose intolerant?

Also why looking for lactose free probiotic

Are you already on absolutely strictly gluten free diet

Strictly gluten free diet often helps or is essential with autoimmune thyroid disease

If still eating gluten getting coeliac blood test BEFORE considering trial on strictly gluten free diet

As others have said you are currently extremely under medicated

Likely to need further increase in levothyroxine after next increase

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is under 2

When adequately treated, TSH will often be well under one.

Most important results are ALWAYS Ft3 followed by Ft4.

When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

Optimal vitamin levels are

Vitamin D at least around 80nmol and around 100nmol maybe better

Active B12 at least over 70

Serum B12 at least over 500

Folate and ferritin at least half way through range

ks-l1977 profile image
ks-l1977

Hi SlowDragon thank you for your message. Yes Leva pills because I am lactose intolerant, and have been strictly off dairy for about two years now. Similar with gluten, but here I do occasionally fail! I do worry that my gut flora, might need a bit support, hence the questions about the probiotics. I had coaliac test done in the past, and came as negative, but all symptoms incredibly improved once is started reducing gluten in my diet.

I had GP appointment this morning, and my dose was increased for now. Then I will have my blood test in two months time and see what is the next step. In the meant time I will concentrate on my VIT B and VIT D levels.

Eddie83 profile image
Eddie83

TSH is way too high! Mine is about 0.33 (US AACE range 0.3-3.0). Your FT3 should be AT LEAST 50% up in range; you should increase levo, and if that doesn't work, add liothyronine. But the most worrisome thing here is that your thyroglobulin and TPO antibodies are elevated; from my experience, even elevations below the threshold mean you have a problem. I think you should look into dietary triggers of autoimmunity; e.g. Izabella Wentz has some books on root cause, and there are many practitioners on youtube who also have advice on this. FYI, my experience was that I am wildly gluten intolerant; after I had been off gluten for 18 months, my TPO antibodies dropped to near zero.

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