Not sure if I need to be concerned??

[Aisha13]

Hi all.

I’m new to this website. I have been taking Levothyroxine for around 7 yrs now. I have never fully understood my results, I get a bit frustrated because no real concern when you feel horrible, you phone the doctor and they take the blood and then I’m waiting...I then have to call the GP back to ask erm soo??..then they check the screen and say no further action! Hold on but I still feel horrible. My levels has always one way or another been just in range or just above, I’m tired of spending hours searching on the internet. I was really happy to find this community as I don’t know anyone personally to share my concerns or experiences with so this is like a blessing to me. Now I recently had my blood test results and still again no clarity. I take 125mg each day, the results show ! Serum free T4 level 22.8 pmol/L (12.0 - 22.0)and Serum TSH level 0.29 mIU/L (0.27 - 4.20) T3 was not taken so unsure of the measurements. I called, the receptionist said no further action. I have been having palpitations, I get very tired and my hair has been getting thinner and can’t seem to resolve,

[SlowDragon Administrator]

Welcome to the forum

Just testing TSH and Ft4 is completely inadequate...but all that most UK GP’s test as standard

Do you know if the cause of your hypothyroidism is autoimmune thyroid disease also called hashimoto’s diagnosed by high thyroid antibodies?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

What vitamin supplements are you currently taking, if any?

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Come back with new post once you get full results and ranges

Your current dose shows high Ft4 and low a TSH .....this might be due to poor conversion of Ft4 to Ft3.

Low vitamin levels frequently results in poor conversion

Having Hashimoto’s also means often poor converter

So first step is to get full testing to see what’s really going on

[Aisha13 in reply to SlowDragon]

Thanks for your reply SlowDragon

So I should of mentioned that I have had the full blood test but not the T3, TPO and TG

My results for

Serum ferritin 129 ug/L

Serum total 25-OH vit D level 82 nmol/L

Serum vitamin B12 862 pg/mL Serum folate 13.4 ng/mL

I was first diagnosed with hyperthyroidism in 2011. I had radiotherapy in late 2012 and have been on Levothyroxine ever since. Wasn’t told exactly what the cause was. I was all confused at the time because of other life experiences.

I am taking well woman plus, I’ve been taking them for about 8 months now.

As you said they don’t advise you on how to prepare for the test. I did read and found out that fasting and 24hrs after last dosage of Levothyroxine would give better results and that’s what I did for the first time for the most recent blood test.

I only learnt a year ago about taking Levothyroxine first thing in the morning.

I might have to go and get it done privately to have more in-depth information as you know the NHS won’t willingly offer any extras.

Thank you for all the useful links you have sent me I will surely check them out.

[Aisha13 in reply to Aisha13]

I also take extra vitamin c 2500mg and vitamin D 1000 IU

[SlowDragon Administrator in reply to Aisha13]

So your vitamins look pretty good..

When were these test results done?

Presumably you had Graves’ disease

After RAI you are unlikely to have any thyroid function left of your own

Naturally our thyroid would make 90% Ft4 and 10% Ft3

Many people, after RAI or Thyroidectomy need the addition of small dose of T3 alongside levothyroxine

But NHS extremely reluctant to test or treat due in main to astronomical price charged to NHS for T3

thyroiduk.org/treatment-opt...

First step is to get full thyroid testing

Come back with new post once you get results

[Aisha13 in reply to SlowDragon]

Hey, hope all is well.

My test results for my vitamins was done about two weeks now.

I just had my T3 blood test on Tuesday, the results are 3.6pmol/L (4.0-6.8)

Yes it was Graves’ disease.

Never had T3, the doctor said he will refer me back to the Endocrinologist. It will take 3-4 months but that’s the only option to get T3 is needed to be prescribed.

Patience is the key 🙂

[SlowDragon Administrator in reply to Aisha13]

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists

thyroiduk.org/contact-us/

You must feel terrible with Ft3 this low

See endocrinologist privately will be much quicker option

[Aisha13 in reply to SlowDragon]

Yes! I’ve had low T3 ever since I been hypothyroidism. I never understood what it meant it was just a bunch of words with numbers.

I am tired literally of feeling like this so I will contact Dionne and see what I can do to move forward. The thing that worries me are funds to pay privately, I just don’t have much, so I might just have to wait.😔

Thank you for your support so far, I really appreciate it.😊

[Aisha13 in reply to SlowDragon]

I was thinking to supplement with zinc and selenium to boost T3 until I get to see a doctor?

[SlowDragon Administrator in reply to Aisha13]

Your already getting those in your well woman plus supplements

[SlowDragon Administrator in reply to Aisha13]

Did you stop your multivitamins a week before all blood tests?

It contains biotin

[Aisha13 in reply to SlowDragon]

No I didn’t. 😬I might have to retest again.

But I know somethings not right because I have the symptoms of low T3 it’s always been low.

[SlowDragon Administrator in reply to Aisha13]

Just supplementing vitamins we need is often better option

Many many people with Graves find strictly gluten free diet helps or is essential

[Aisha13 in reply to SlowDragon]

I am looking into gluten free. I have had a celiac test done waiting for results.

[SlowDragon Administrator in reply to Aisha13]

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

[SlowDragon Administrator in reply to Aisha13]

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. 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 Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

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...

[SlowDragon Administrator in reply to Aisha13]

Generally we say don’t take multivitamins

Instead only supplement what you need

Ferritin is high enough. You don’t need iron

Just supplement vitamin D - mouth spray by Better You is good

A GOOD Quality vitamin B complex that has folate in, not folic acid

Possibly an occasional selenium

[Aisha13 in reply to SlowDragon]

Ok so maybe I should stop my well woman plus. If it’s not helping me. I did take b complex in the past so I will try and get more.

The link explaining folic compared to folate is very interesting. Thank you

[Aisha13 in reply to Aisha13]

I take vitamin D vitabiotics 25ug. Is the spray more effective?

[DippyDame]

Welcome....if it's any consolation your story is very familiar. It's a shocking state of affairs that many people are suffering because medics are poorly educated in thyroid disease

However, you've now arrived at the right place, I can vouch for that!

I see SlowDragon has offered you lots of advice.....so my only advice is carefully follow it.

If it hadn't been for her and other experienced members here my health would have continued to deteriorate from a state where I could barely function!

Please keep us posted.

Good luck....you're not alone, at TUK we're all in this mess together!

[Aisha13 in reply to DippyDame]

hey..thanks for the warm welcome.

Yea I’ve read so many familiar stories, some that’s made me think mines not so bad, it could be worse.

Yea some good advice and suggestions from SlowDragon, appreciated!

I’m grateful that I have found Thyroid UK it has really had a big impact on my life already. Just hearing and relating to a lot on here. I feel like we are all together which is fab! To have people that understand what your going through. I can only see my life improving, with all the support and advice available. Happy days 😊