Thyroid UK
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i'm new & have many questions please!

Hi everyone, not sure how this forum works so please bear with me and let me know if i'm breaking any rules or etiquette!

1) is advice/responses received from fellow patients or are there drs/pharmacists/forum admin on here too?

2) anyone have experience of iodine deficiency testing? and why isn't this mentioned a lot on the website?

3) would love to talk to other breastfeeding mums who have hypothyroidism symptoms and whether reference ranges for lactation exist

4) my result was serum free T4 12.8 pmol/L [ref range 12.0 - 22.0]

and TSH 2.13 mIU/L [ref range 0.3 -5.0] - it seems to my slightly untrained eye that my free T4 is borderline low and my TSH is norm.

my vit D is deficient and ferritin 45 ng/ml [15.0 -350] so looks suboptimal

5) test was done in morning but not fasting. does this matter? i have read since i joined this forum that fasting is best but i was never told this so deffo ate breakfast beforehand

6) i have a very challenging relationship with GP!!!! currently getting testing for coeliac alongside which is super difficult.

is it worth me getting the antibodies and free t3 tested given my results and how can I get GP to agree?

Thanks so much

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The Posting Guidelines and the answers to your question 1 can be found here :

healthunlocked.com/thyroidu...

There may be people on the forum who are medically qualified. But if there are they keep quiet about it, and since this is the internet we would have no way of checking the truth of such claims anyway. So - always, always, always assume that the people you are reading and responding to are NOT medically qualified and are simply patients or are posting in connection with a patient e.g. a partner or parent.

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thanks sorry i am new to this forum and forums in general so missed the 'pinned post'

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No need to apologise. :) We've all been new at one time.

Welcome to the forum. :)

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Hi tiredBFmum and welcome to the forum.

1) is advice/responses received from fellow patients or are there drs/pharmacists/forum admin on here too?

This is purely a patient to patient forum, we are not medically qualified but speak from personal experience and what has helped us.

2) anyone have experience of iodine deficiency testing? and why isn't this mentioned a lot on the website?

I have done the urine iodine test. I chose the non loading test as my research led me to an article which discussed flaws in the iodine loading test (the one where you take iodine before testing). It's discussed occasionally.

3) would love to talk to other breastfeeding mums who have hypothyroidism symptoms and whether reference ranges for lactation exist

You would be better making a separate thread about this, making sure the title is directed at the people with this experience.

4) my result was serum free T4 12.8 pmol/L [ref range 12.0 - 22.0]

and TSH 2.13 mIU/L [ref range 0.3 -5.0] - it seems to my slightly untrained eye that my free T4 is borderline low and my TSH is norm.

my vit D is deficient and ferritin 45 ng/ml [15.0 -350] so looks suboptimal

Yes, your FT4 is very low in range and your TSH is classed as normal.

Ferritin needs to be at least 70 for thyroid hormone to work (our own or replacement) and half way through range is recommended. You should be supplementing for your level or eating liver regularly, maximum 200g per week due to it's high Vit A content, can raise it, also include lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

If your Vit D is deficient, what have you been prescribed? If the level was below 30 have you been given loading doses?

If you are taking a Vit D supplement then 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 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.

5) test was done in morning but not fasting. does this matter? i have read since i joined this forum that fasting is best but i was never told this so deffo ate breakfast beforehand

Yes it does matter. Eating lowers TSH, so fasting overnight before a blood draw is important when looking for a diagnosis, to avoid a reduction in dose of Levo or when looking for an increase, as it will give the highest possible TSH when coupled with the earliest appointment of the day, no later than 9am, earlier if possible.

6) i have a very challenging relationship with GP!!!! currently getting testing for coeliac alongside which is super difficult.

Many of us do!

is it worth me getting the antibodies and free t3 tested given my results and how can I get GP to agree?

Definitely get antibodies tested, and FT3, to complete the picture. With a 'normal' TSH and low FT4/FT3 you could be looking at central or secondary hypothyroidism, where the problem lies with the pituitary or hypothalamus rather than the thyroid. Not many doctors know about this so you can research it and offer information if necessary (that should be fun with your GP!!).

GP wont be able to get one of the two types of antibodies tested, and unlikely to get FT3 tested either. The two types of antibodies are Thyroid Peroxidase (TPO) and Thyroglobulin (TG). NHS rarely does TPO and almost never does TG (maybe if an endo requests it). FT3 test is decided by the lab even when a GP requests it, generally only done if TSH and FT4 are way out of range.

You might be better off doing a private fingerprick test to include these. And if you do, then include the vitamins and minerals if you've not had B12 and folate tested.

Medichecks and Blue Horizon both offer a variety of thyroid bundles and are good value, with turn around time being 24-48 hours after receipt of your sample.

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thank you! that was such a quick and helpful response

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do you then take the medichecks results to your nhs GP? do GPs accept results from medichecks as correct or do they repeat them? i've never done a private blood test and dont know how NHs view them?

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tiredBFmum You can take your private test results to your GP. Some will accept them, some will not. As you have a challenging relationship with your GP I think I can guess which way it will go! However, you can tell your GP that Medichecks and Blue Horizon is accredited labs the same as the NHS.

If you post your results (with reference ranges) when you get them, before you see your GP, them members can comment and advise you where any problems lie so that you can discuss these with your GP. You can also tell your GP that you have taken advice from NHS Choices recommended source of information and NHS Choices wouldn't be recommending anyone if they weren't satisfied with the information they pass on.

If your GP still won't accept them, then invite him/her to repeat all of them.

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Can't answer all your questions, but here's what I can :

1) This is a patient to patient forum. As far as we know, there are no doctors or pharmacists. The admin look after the running of the site and are not trained in any way in thyroid conditions. They only advise as fellow sufferers.

2) Getting tested for iodine deficiency can be difficult, and not always necessary. What is important is that you don't supplement with iodine unless you have been tested and found deficient. And, even then it should be under the supervision of a doctor who knows what he's doing. It is not as simple as just taking a pill. Taking iodine when you don't need it can cause all sorts of problems.

3) Your results can't really be analysed without knowing if you are taking thyroid hormone replacement or not. If you are, then your FT4 is much too low and your TSH too high. If not, they would be considered 'normal'. Ferritin should be at least mid-range.

4) Your doctor wouldn't know about fasting. That's a patient-to-patient tip because TSH decreases after eating. So, as they only tend to look at the TSH, we usually need it as high as possible. You should also leave 24 hours between your last dose of levo and the blood draw. 12 hours for NDT/T3.

5) It is vital you get your antibodies and T3 tested, but there is no way to get your doctor to test them if he's not inclined so to do! Ideally, you need your FT4 and FT3 tested at the same time, in order to evaluate your conversion. But, the NHS will rarely allow the FT3 to be tested. There are two types of antibodies for Hashi's, the NHS will only grudgingly test one of them on occasions, and the other only for cancer patients. But, if either of them are high, you have Hashi's. And you need to know if you have Hashi's because you will have to deal with it yourself - gluten-free, selenium - because your doctor won't even admit it's a problem! Although it definitely is.

However, it is possible to get these things tested privately. If you go to the ThyroidUK home page, you will find details of private testing. :)

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