Thyroid issue? Not diagnosed: Hi to everyone... - Thyroid UK

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Thyroid issue? Not diagnosed

Kazza09 profile image
11 Replies

Hi to everyone. About 2 years ago I started to feel very unwell with all the typical symptoms of what I believed were thyroid problems. So I had some bloods done.

Serum B12 183 pg/L (180 – 900)

Total vitamin D 13.3 nmol/L

Haemoglobin 107 g/L. (115 – 150)

MCHC 307 (310 – 350)

MCH 20.5 (28 – 32)

MCV 71.2 (78 – 98)

TSH 5.36 (0.2 – 4.2)

Free T4 11.4 (12 – 22)

TPO antibody 375 (<34)

TG antibody >1200 (<115)

I was given loading dose of vitamin D and iron tablets and have been taking folic acid 5mg.

I also receive B12 injections.

My boyfriend is very concerned about my health, any advice appreciated. Thank you.

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Kazza09
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11 Replies
SeasideSusie profile image
SeasideSusieRemembering

What are your results currently?

What are you supplementing with?

TSH 5.36 (0.2 – 4.2)

Free T4 11.4 (12 – 22)

TPO antibody 375 (<34)

TG antibody >1200 (<115)

These results showed autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. You should really have been started on Levo with those raised antibodies plus over range TSH and below range FT4.

If you don't have any current results, please get all these tested again.

Kazza09 profile image
Kazza09 in reply toSeasideSusie

These are my current results, I am on maintenance dose of vit D and B12 injections once every 3 months. Also 5mg folic acid once a day. Thanks

SeasideSusie profile image
SeasideSusieRemembering in reply toKazza09

A maintenance dose of Vit D - is that 800iu D3 daily?

I'm on my tablet, will put my PC on where all my information is stored and do another reply.

Kazza09 profile image
Kazza09 in reply toSeasideSusie

Thank you yes 800iu D3 daily

SeasideSusie profile image
SeasideSusieRemembering in reply toKazza09

Oh dear :( I keep saying this, I despair of these idiot doctors.

Total vitamin D 13.3 nmol/L Was this before or after the loading doses? I am assuming after the loading doses as I asked for your current results. If you have not been retested after the loading doses then the following comments may not apply and you need to find out your new level.

800iu D3 daily

This really is unbelieveable! You are severely deficient and 800iu will never in the reign of pig's pudding raise your level, you say you were given loading doses, did they follow the recommendation below:

NICE treatment summary for Vit D deficiency:

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

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Each Health Authority has their own guidelines but they will be very similar. Go and see your GP say that as you are still severely deficient you either need more loading doses (if that's possible, I don't actually know) or some investigation into why your level didn't rise after the initial loading doses.You need to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, 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 City Assays vitamindtest.org.uk/

Your doctor wont know, because they are not taught nutrition (so no point in discussing it), but there are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and 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.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and 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

naturalnews.com/046401_magn...

Check out the other cofactors too.

**

Serum B12 183 pg/L (180 – 900) B12 injections once every 3 months

I take it you are getting your injections on time. Were you due for one when this test was done as it is exceptionally low for someone receiving injections or is this the level before your injections?

Did you have intrinsic factor antibodies tested? Do you have Pernicious Anaemia?

Is your Folate level at least half way through it's range?

**

Haemoglobin 107 g/L. (115 – 150)

MCHC 307 (310 – 350)

MCH 20.5 (28 – 32)

MCV 71.2 (78 – 98)

Indicates iron deficiency anaemia. How many iron tablets are you on? It should be 3 daily and you should take each one with 1000mg Vit C to aid absorption and help prevent constipation.

**

TSH 5.36 (0.2 – 4.2)

Free T4 11.4 (12 – 22)

TPO antibody 375 (<34)

TG antibody >1200 (<115)

As mentioned, you have autoimmune thyroiditis aka Hashimoto's. Antibody attacks will cause fluctuations in symptoms and test results and you may swing from hypo symptoms to hyper-type symptons.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies which is pretty obvious from yours. The absorption problem needs to be addressed so that nutrients can be absorbed and levels optimised. Please check SlowDragon 's reply near the bottom of this thread for information and links to help healthunlocked.com/thyroidu...

**

As for your over range TSH, below range FT4 and positive antibodies, you should have been started on Levo. From thyroiduk.org/tuk/about_the...

Dr A Toft, consultant physician and endocrinologist at the Royal Infirmary of Edinburgh, has recently written in Pulse Magazine, "The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.2 But if it persists then antibodies to thyroid peroxidase should be measured.

If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.

In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up."

Dr Toft is past president of the Briish Thyroid Association and leading endocrinologist. You can obtain a copy of the article by emailing Dionne at tukadmin@thyroiduk.org

You should ask your GP to start you on Levo.

Kazza09 profile image
Kazza09 in reply toSeasideSusie

Thanks. Vit D level after loading dose.

I was due for next B12 injection and this was before it. I haven't had intrinsic factor antibodies checked.

Folate is below range.

No iron tablets.

Gp did not offer me levo and did not ask me how I was feeling

SeasideSusie profile image
SeasideSusieRemembering in reply toKazza09

I am appalled Kazza. Your results are absolutely dire. It's hard to believe that your Vit D was still 13.3 after loading doses and that your GP was happy to give you just 800iu daily. Please take that information I posted and discuss this situation with your GP. I believe there must be some serious malabsorption issue going on and it needs investigating. Same for B12 and folate results.

In your original post you said you had been given iron tablets. Why aren't you on them now? You should really be referred to a haematologist with those FBC results. They indicate iron deficiency anaemia and here is NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):

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

How should I treat iron deficiency anaemia?

•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

•Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

◦Do not wait for investigations to be carried out before prescribing iron supplements.

•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

• Monitor the person to ensure that there is an adequate response to iron treatment.

Do you have a result for Ferritin?

You have the information about starting Levo with your results so you should ask your GP for a prescription.

Does your boyfriend go into the consultation with you? If not then ask him to. It's surprising what a difference it makes even if he just sits there and says nothing. But he can pipe up and confirm how your symptoms are affecting you and suggest that further investigations take place if your GP isn't forthcoming.

Kazza09 profile image
Kazza09 in reply toSeasideSusie

Ok thanks my result for ferritin is 15 (30 - 400) and GP stopped my iron in 2016 when ferritin took 6 years to go from 22 (30 - 400) to 187 (30 - 400)

Boyfriend does not come into consultations with me, I will make sure he does this time

SeasideSusie profile image
SeasideSusieRemembering in reply toKazza09

So your ferritin, along with your other results, confirm iron deficiency anaemia. This all must be pointed to your GP and suggest an immediate iron infusion to start getting things back on track.

SlowDragon has added her information about addressing gut/absorption problems so please take time to read through the links and you can start helping yourself there.

Please let us know what the GP says after your next appointment.

Kazza09 profile image
Kazza09 in reply toSeasideSusie

Thanks I will get GP appointment tomorrow

SlowDragon profile image
SlowDragonAdministrator in reply toKazza09

Make an urgent appointment to see a different GP at the practice

Ideally take your boyfriend along too (amazing how much better consideration and treatment when there's a witness and supportive person with you)

Your results show you are hypothyroid and the raised antibodies confirm it's because you have Hashimoto's also called autoimmune thyroid disease

You need starting on Levothyroxine at 50mcg

Nice guidelines saying how to initiate and increase. (Note most patients eventually need somewhere between 100mcg and 200mcg. )

cks.nice.org.uk/hypothyroid...

I would also suggest you request testing for coeliac disease

You have probably/possibly had Hashimoto's as long as, or before vitamin deficiencies started. Hashimoto's is the cause, not the result

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

Low vitamin levels affect 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 gut connection is very poorly understood

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

Ideally ask GP for coeliac blood test first

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...

thyroidpharmacist.com/artic...

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

The majority of us with Hashimoto's have non-coeliac gluten sensitivity. But it makes sense to rule out coeliac first while still on gluten

NCGS can be as serious as coeliac, there just isn't a simple test for it.

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