Hi I'm new here: Apparently I am at risk of... - Thyroid UK

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Hi I'm new here

Jnt86 profile image
29 Replies

Apparently I am at risk of developing hypothyroid?

TPO ANTIBODY 2000 (<34)

TSH 9.2 (0.2 - 4.2)

FT4 12.1 (12 - 22)

I have irritation in neck, tiredness, watery eyes

Test was done after strong family history of autoimmune

Transferrin saturation also low. 12 (12 - 45)

Dec 2017

FERRITIN 26 (15 - 150)

FOLATE 2.1 (2.5 - 19.5)

VITAMIN B12 230 (180 - 900)

TOTAL 25 OH VITAMIN D 33.8

RBC 4.41 (3.8 - 5.8)

WBC 7.12 (4.0 - 11.0)

MCV 80.2 (83 - 98)

MCHC 386 (310 - 360)

HAEMOGLOBIN 116 (115 - 150)

HAEMATOCRIT 0.42 (0.37 - 0.47)

IRON 7.1 (6 - 26)

CALCIUM 2.25 (2.20 - 2.60)

CALCIUM ADJUSTED 2.26 (2.20 - 2.60)

Haven't been on iron for 25 months, folic acid started Nov 2016, vit D 800iu started Dec 2013

Thank you in advance for feedback

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Jnt86 profile image
Jnt86
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29 Replies

What date were these tests taken and who did them? Your GP?

Have you seen your GP to discuss them yet?

Do you have any other symptoms?

Your raised TPO show that you have Hashimoto's Autoimmune Thyroiditis.

Your HIGH (above range) TSH and Low (bottom of range) T4 indicate Hypothyroidism - what did blood test report say?

You need other tests including FT3, T3 and T4.

You could also ask GP to test levels of the following nutrients :

Vitamin D

Calcium

Vitamin B12

Folate and

Ferritin.

Look up the list of symptoms on Thyroid UK.

Take your temperature each morning first thing and keep a record if low ( under 36.5) remembering to add one if taking underarm (I forgot!). If taking under tongue, then as read.

Discuss your results and list of symptoms with GP.

Jnt86 profile image
Jnt86 in reply to Mary-intussuception

Hi TFT 4 weeks ago was

TSH 10.8 (0.2 - 4.2)

FT4 9.1 (12 - 22)

FT3 3.2 (3.1 - 6.8)

GP did both of them, ones I posted were December 2017. Report says unknown if thyroid disease

Surely I need treatment?

Mary-intussuception profile image
Mary-intussuception in reply to Jnt86

I would say so.

So both were done in December ?

Jnt86 profile image
Jnt86 in reply to Mary-intussuception

TFT showing TSH above 10 done end of Nov

Nanaedake profile image
Nanaedake in reply to Jnt86

TSH 10.8 (0.2 - 4.2) Even in the UK, this would signal you need thyroid replacement hormone. TSH is elevated above 10.

FT4 9.1 (12 - 22) Your FT4 is below range so you don't have enough thyroid hormone to convert to adequate amounts of T3.

FT3 3.2 (3.1 - 6.8) FT3 is much too low, nearly below range so you do not have enough active thyroid hormone. It's best in the top third of the range.

Mary-intussuception profile image
Mary-intussuception in reply to Jnt86

This is Overt Hypothyroidism.

Did this November report say - Hypothyroid?

I think if you get copies of your hospital records or actual lab result from your GP you will find it does. It should.

Ask GP to refer you to an Endoctinologist. I asked my GP for an Ultrasound scan of my Thyroid, which he arranged. The morning after the scan GP made urgent referal to Endocrinologist, who did Short Synacthen Test to check my Adrenals BEFORE I started my Levothytoxine.

Ask GP about checking Adrenal function first. Ask for the nutrients levels to be tested. Look up symptoms of deficiency in each one on NHS choices and other sites.

Hopefully it won't be too long before you see Endo.

If you have to wait a long timd for Endo appointment and GP is happy to arrange tests to check Adrenals first and you want to start treatment then ask GP. It should be 50mcg Levothyroxine to start with and follow up testing in several weeks. Make sure you get nutrients tested though and put results with ranges on here.

If you pay for prescriptions you shouldn't anymore. Ask GP for the Application form for exemption due to Hypothyroidism.

Jnt86 profile image
Jnt86 in reply to Mary-intussuception

Hi ultrasound scan was done 3 times. Thyroid was found to be vascular and not many signals coming back from thyroid

Mary-intussuception profile image
Mary-intussuception in reply to Jnt86

Ask Endo for a full explanation or GP if not seeing Endo?

Jnt86 profile image
Jnt86 in reply to Mary-intussuception

Other results added

You've already had these tests ?and now added to your post ???

Full information up front is helpful.

And saves a lot of time.

If you've been reading through posts on here then you will know that you need to have all your low nutrients levels and outside range results addressed - ask for testing for Pernicious Anemia. Ask for referal to Haematology if GP not treating you - Iron needs attention as well as B12 & B9.

Vitamin D deficiency - should be referred to a Specialist /treated with Loading Doses of between 280,000 and 300,000 IU in split doses over several weeks according to NICE guidelines. Then follwed by daily maintenance dose which could be 800 IU or as much as 1000 to 2000 IU , depending on the individual patient. Google to read full details of NICE guidelines for treatment of Vitamin D deficiency.

If you get all these deficiencies corrrectly treated before you see Endo / start Levo, then your Levothyroxine should work better for you.

Remember to take Levo on it's own with water. Take your supplements 3 to 4 hours later with food.

It's strange - Your GP's knowledgable enough to do all the right tests but is not treating you ??

Have you discussed these results with him yet?

However, you do still need FT3, T3 and T4 testing. Endo should do them.

Nanaedake profile image
Nanaedake

You ARE hypothyroid. Can I ask who said you were 'at risk' of becoming hypothyroid? Your FT4 is very low so you don't have enough pro-hormone for your body to convert to the needed active hormone T3. Your brain and heart and cells need enough thyroid hormone to function efficiently.

If in the UK, some doctors think patients have to wait until their TSH is elevated above 10 while in the meantime patients are left with untreated symptoms. In other countries once the TSH is above 3, the doctor will consider treating if the patient has antibodies.

You have antibodies for Hashimotos thyroiditis and a raised TSH so the advice on this forum is to start on levothyroxine, prescribed by your doctor. Also, you need vitamin levels testing. B12 - folate - vitamin D. All of these are often low in people with thyroid conditions.

You will not feel well and thyroid hormone will not work effectively unless your vitamins are optimal. I see transferrin level is low, have you got results from full iron panel? Vitamins all need to be mid-range with B12 near the top of the range. If you've had them tested, please post here if you'd like advice and if not yet done then do ask GP to do them.

Jnt86 profile image
Jnt86 in reply to Nanaedake

Hi my GP said I was at risk of becoming hypothyroid. I will ask to start levothyroxine.

Can add other results to my post if that's ok

Nanaedake profile image
Nanaedake in reply to Jnt86

yes, do add them.

Jnt86 profile image
Jnt86 in reply to Nanaedake

Ok other results added

Thanks

shaws profile image
shawsAdministrator in reply to Jnt86

The fact that you have such high antibodies and a very high TSH of nearly 10, you should have been prescribed. In other countries when the TSH is 3+ people are prescribed. In the UK it is an horrendous 10, but antibodies have priority and you should have been prescribed.

If you put your other results on this post - those who've already responded may not see them unless you put an @ then the beginning of their name and you will see below a selection and choose the one you want. It will appear like this Jnt86 and they will be alerted. You can list them below one another.

Mary-intussuception profile image
Mary-intussuception in reply to Jnt86

jnt

Make sure you have appropriate testing to check your Adtenal function before starting Levothyroxine if you are going to ask GP to prescribe rather than wait for Endocrinologist appointment.

I would also want FT3, T3 & T4 tested before as well. Then ALL of the TFTs done again on retesting after starting Levo. Enfo should do these,.not sure if GP will.

shaws profile image
shawsAdministrator

Doctors are ignorant. You have an Autoimmune Thyroid Disease called Hashimotos and should be on 50mcg of levothyroxine with an incremental dose of 25mc after each blood test until TSH is 1 or lower with FT4 and FT3 in the upper part of the ranges.

As doctors know so little we have to read, learn and ask questions in order to feel much better with no clinical symptoms.

You should have a blood test every six weeks, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levothyroxine and the test and take afterwards.

Ask also for B12, Vit D, iron, ferritin and folate as deficiencies also cause symptoms.

Going gluten-free can help reduce the attack of the antibodies on your thyroid gland, sometimes making you feel you have too much hormones.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

Nanaedake profile image
Nanaedake

Was your vitamin D below 30 when you were diagnosed vitamin D deficient because if so you should have had loading doses. 800iu of vitamin D won't help a deficient mouse let alone someone with levels below 30. Are you in the UK? If so there are guidelines your GP should follow see NICE guidelines below. You need to aim to increase vitamin D level to around 100nmol.

cks.nice.org.uk/vitamin-d-d...

You need to take magnesium and K2-MK7 with vitamin D3 in order to absorb the vitamin D effectively. Magnesium citrate is ok but there are other choices for magnesium.

naturalnews.com/046401_magn...

All your vitamin levels are dire. Have you got symptoms of B12 deficiency because if so, I advise you to post your B12 and folate results along with an outline of your thyroid condition and symptoms, low ferritin etc on the HealthUnlocked Pernicious Anaemia forum healthunlocked.com/pasoc and ask their advice about what your GP should be doing. You may need further investigations to rule out pernicious anaemia. You should not take folic acid when you have B12 deficiency until B12 supplements are started. Folic acid supplements can mask B12 anaemia I believe.

B12 symptoms of deficiency

b12deficiency.info/signs-an...

B12 The Guidelines Doctors follow

onlinelibrary.wiley.com/doi...

onlinelibrary.wiley.com/doi...

Ferritin needs to be at least 70 or mid-range for your own thyroid to function properly. Your MCV is low which shows deficiency.

Iron deficiency anaemia NICE guidelines

cks.nice.org.uk/anaemia-iro...

The importance of vitamins and thyroid function

americannutritionassociatio...

Jnt86 profile image
Jnt86 in reply to Nanaedake

Hi yes I am in UK. Vit D was under 30 when diagnosed. Will post B12 and folate on the other forum.

Thanks

Mary-intussuception profile image
Mary-intussuception in reply to Jnt86

So are you already taking Vitamin D ?

Where does it say that ???

I can't see it.

Jnt86 profile image
Jnt86 in reply to Mary-intussuception

Vitamin D 33.8 taking 800iu

Mary-intussuception profile image
Mary-intussuception in reply to Jnt86

Since when?

This is why it's important to ask for a print out and put FULL information on here.

So Vitamin D was 30 when diagnosed ?

Have you edited your original post more than once?

I thought you said Vitamin D was 25 or under 30? It's getting late!

I now see you have a history of iron deficiency from over 2 years ago and Vitaman D insufficiency 4 years ago?

What are the ranges and comments on your Vit D results?

I think you will find that 30 is bottom of range of "insufficiency". And , GPs tend to prescribe the 800 IU daily maintenance dose without, it seems considering the 1000 or 2000 IU dose - it so appears.

Still worth asking about Loading doses or even an increased daily maintenance dose - considering that it's taken 4 years for your Vit D levels to come up from 30 to just 33.8 !

You should also have been given dietry advice.

Ask GP urgently about Vit D. Ask for referal to a Specialist.

If you were under Haematology 2 years ago re iron - then give them a call.

Jnt

Do you havd IBD or IBS?

If you have Crohns, Colitis or Diverticula Disease then you will have malabsorption.

Jnt86 profile image
Jnt86 in reply to Mary-intussuception

Been taking vit D since 2013. Comments for vit D was supplementation is indicated. I don't have IBD or IBS, crohns or colitis or diverticula disease, possibly coeliac.

Nanaedake profile image
Nanaedake in reply to Jnt86

Vit D was under 30 when diagnosed, So when you visit your GP this time ask to be treated according to NICE guidelines. Since you weren't treated correctly the first time, hopefully GP will correct this error by giving you loading doses. I think you have grounds to insist. Perhaps see a different GP in the practice?

If GP will not increase dose, you will need to buy your own supplements. Vit D needs testing every 3 months when supplementing initially until you find the correct dose for you. The reason for monitoring is because it can build up to toxic levels if you supplement too much as it's stored in the body. You can get vitamin D tested via City Assays, cost approx £28. The information is on Thyroid UK's website.

Raising iron levels through diet

You can help raise your iron level by a maximum 200g per week of liver, no more, due to its high Vit A content, and include lots of iron rich foods in your diet, weblink posted by SeasideSusie below.

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

Helping iron levels with diet - post on HealthUnlocked.

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

See a different GP and get prescription for standard starting dose of 50mcgs replacement thyroid hormone, Levothyroxine

You are very hypothyroid

Vitamin levels are dire

Ask for blood test for coeliac disease. Most likely negative, but many with Hashimoto’s find strictly gluten free diet helps significantly

SlowDragon profile image
SlowDragonAdministrator

You have almost certainly needed to be on thyroid medication as long as you have had low vitamin levels, i.e. At least 3 years

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels stop Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

You are already hypothyroid, but the NHS won't treat until TSH is over 10 or free T4 drops below range

Jnt86 profile image
Jnt86 in reply to Angel_of_the_North

Hi TFT 4 weeks ago was

TSH 10.8 (0.2 - 4.2)

FT4 9.1 (12 - 22)

FT3 3.2 (3.1 - 6.8)

So surely I need medication now or no?

Mary-intussuception profile image
Mary-intussuception in reply to Jnt86

Yes, as soon as you have had your Adrenals tested and know that they are OK.

If Adrenals are not OK then get them sorted first.

I wasn't told of my Hypothyroid results in 2008. But a Rheumatologist saw them on the computer in 2010 and retested. These came back just within range and lab comment was "Euthyroid" which means "Normal". So he said 'Thyroid's OK'.

I eventually got copies of my hospital records and sought advice from a woman on a Thyroid helpline. She told me to ask GP for an Ultrasound scan of my Thyroid. When GP got results he refered me to an Endocrinologist AND presrcribed me 50mcg Levothyroxine.

The helpline woman had said that the Endo would probably check my Adrenals first.

So I thought that - as I'd waited so long - I would hang on a bit longer till seeing Endo and get ALL the tests. So I didn't start my Levothyroxone.

Endo did full range of Thyroid bloods a week before my apppoinment and arranged Urgent Short Synacthen Test to check my Adrenals first - straight after my appoinment.

When he got my results he phoned me to say Adrenals OK - start Levo.

This was now 2011. When I was formally diagnosed with Hashimoto's & Hypothyrpidism.

You need everything sorted asap:

Adrenals checked ;

All nutrients deficiencies treated and PROPERLY supplemented;

And

Your start dose Levo.

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