Advice needed please: Hi guys, I would very much... - Thyroid UK

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Advice needed please

Mandymoobear profile image
7 Replies

Hi guys, I would very much appreciate your thoughts and advice for me to move forward.

Picture.....Aged 50, going through menopause last 1.5 yrs, Hypo for 26 yrs, currently on 125 mcg Levo. Feeling “woozy” much of the time, recently suffered Vertigo for first time ever. Ears “not right”, have been referred to ENT. Recent lab results:

TSH 0.02 (0.30-4.80) LOW

FT4 13.9 (7.7-20.6)

T3 “IT error” so no result 😳

Serum Thyroglobulin 4.6 (<40)

Thyroglobulin Autoantibodies <20 (<40)

Folate 4.57 (3-20)

Ferritin 58.5 (11-307)

B12 306 (145-914)

Vitamin D 52

Although my GP feels all is ok, I don’t feel “well” and lack energy and clarity. I think I need to just go ahead and supplement myself. Happy to do that but need some guidance on A) the best supplements to buy without fillers, chalk etc B) starting doses. Thank you in advance for your help. Mandy

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shaws profile image
shawsAdministrator

Welcome to our forum,

I'm sorry you have hypothyroidism and most of us have found out - to our cost - that the majority of doctors have no clue about the purpose of the thyroid gland and how best to treat their patients to recover their health and get back to a normal life. They have also been told to restrict us to levothyroxine (T4) which is an inactive hormone and it has to convert to T3 (active hormone). Many people do so effectively but there's a section of us who cannot do so and remain unwell, especially if we're restricted to a dose due to the TSH result rather than Free T4 (yours could be nearer the top of the range) and Free T3 being tested.

Your doctor is going by the TSH alone - which is low and most seem to believe that a very low TSH means we've gone hypERactive but that's not the case.

These are some helpful ideas so that we get the best possible blood test results.

All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of thyroid hormones and the test and take them afterwards. Food and caffeine can affect the uptake of hormones so we have to leave an hour between dose (which is taken with one full glass of water) and wait an hour before eating.

Even though your TSH is low and that's all doctors seem to look at, your FT4 could be higher but the most important number is an FT3 one and that hasn't been tested.

A Full Thyroid Function Test consists of T4, T3, Free T4, Free T3 and thyroid antibodies.

The following also have to be optimal:-

B12, Vit D, iron, ferritin and folate and these should be tested too.

If GP wont (most don't do a Full Thyroid Function Test) you can get a private test from one of the recommended labs.

thyroiduk.org.uk/tuk/testin...

Follow above advice to get the best optimum results.

Mandymoobear profile image
Mandymoobear in reply to shaws

Hi thank you for your swift and detailed reply. Next time I get my bloods tested I will ensure the T3, Free T4 and Free T3 are included. I am ready to supplement with Ferritin, Folate, B12, Vit D & Iron as they are all in at low end of the scale.

Can you point me in the right direction for the best quality supplements, and where to start with doses please. I feel getting optimum with the above will be a good start to getting to better health. Many thanks Mandy

shaws profile image
shawsAdministrator in reply to Mandymoobear

I will add in SeasideSusie who is excellent in advising how to resolve deficiencies in vits/minerals. If you're in the UK, usually doctors are limited in what to test. If you have difficulties and can afford a private test, I will give a link. These are home finger pin-prick tests and make sure you are well hydrated a couple of days before blood draw.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

SeasideSusie profile image
SeasideSusieRemembering in reply to Mandymoobear

Mandymoobear

Are you in the UK?

Vitamin D 52

What is the unit of measurement? Is this nmol/L or ng/ml. It makes a big difference. If it's nmol/L then you are low, if it's ng/ml then it's perfect. If you can clarify and if it's nmol/L I will point you in the right direction of what you need.

B12 306 (145-914)

Again, unit of measurement is important. Is it pmol/L or ng/L or pg/ml?

A more useful test would be Active B12 which tells us what is available to be taken up by the cells. Serum B12 (which is what you have) is total B12.

Also, check for signs of B12 deficiency here

b12deficiency.info/signs-an...

Do you have any?

Folate 4.57 (3-20)

This is low and needs supplementing, but would need to be delayed if further testing of B12 is to be carried out.

Ferritin 58.5 (11-307)

This is not low enough for any GP to be concerned; however, it's said that for thyroid hormone to work properly (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.

You can help raise your level 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...

It's not a good idea to take an iron supplement unless an iron panel is done. If serum iron is already good then supplementing with iron can take it over range and too much iron is as bad as too little. I raised my ferritin without affecting the rest of my iron panel by eating liver (my experience, may not be every one's).

Mandymoobear profile image
Mandymoobear

Hi my Vit D is measured in nmol/L. The B12 ng/L. Last time I had my B12 checked in Jan 2018 it was 268. My Dad has B12 injections. I looked at the signs of deficiency and I have several of the signs. Where do you think I should start with supplementing? I just want to get going with getting my Ferritin, Folate, B12 & Vit D optimum. Also my TSH is always around 0.01 or 0.02 and my T4 generally sits around 13. Do I need to go higher with my Levo, I’m currently take 100 mcg. Thank you for your help 😊

SlowDragon profile image
SlowDragonAdministrator in reply to Mandymoobear

Many people need FT4 higher in range

Obviously your GP will only look at suppressed TSH

Did you get GP to test for Pernicious Anaemia?

B12 and folate on the low side. Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

Many of us find supplementing helps improve B12 deficiency symptoms

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).

Or Jarrow B-right is popular choice, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms, although a placebo effect cannot be excluded, as a number of patients without B12 deficiency also appeared to respond to B12, administration.

ncbi.nlm.nih.gov/pubmed/169...

Patients with AITD have a high prevalence of B12 deficiency and particularly of pernicious anemia. The evaluation of B12 deficiency can be simplified by measuring fasting serum gastrin and, if elevated, referring the patient for gastroscopy.

Folate supplements can help lower homocysteine

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

Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.vothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.

Mandymoobear profile image
Mandymoobear

Also.....yes I’m in the UK

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