Newbie Hypothyroid : Hi, I had total... - Thyroid UK

Thyroid UK

137,135 members160,809 posts

Newbie Hypothyroid

Bettle7 profile image
14 Replies

Hi, I had total thyroidectomy in 2017 due to multi-nodular goitre. Since then I’ve had lots of symptoms from flushing, anxiety, can’t tolerate heat, muscle pains etc. I was originally on 100 mg of Levo and I couldn’t tolerate Teva so I asked the GP to reduce to 75. For months went through combinations of 75 and back to 100. Now I’m on 125 of almus.. my Tsh is 0.04 and T4 is 24. Vitamins they say ok except D which is 24.My antibodies are ok. I have prolapse eyelids and now have dry eyes that I have prescribed eye drops. I am supplementing with B12, vitamin C and zinc. However I still don’t feel like myself as I have really bad chest pains and fast heart beats and wake up through the night. I have less brain fog on 125 but should I go back to 100mg. Any thoughts?

Written by
Bettle7 profile image
Bettle7
To view profiles and participate in discussions please or .
Read more about...
14 Replies
SeasideSusie profile image
SeasideSusieRemembering

T4 is 24.

Do you have the reference range for that, eg FT4: 15 (12-22).

Ranges vary from lab to lab so we need your lab's range to interpret your results. I would guess that it's either high in range or over range.

You need FT3 testing at the same time as FT4 to check whether you are converting T4 to T3 well enough (I'm guessing you're not). FT4 and FT3 should be balanced when on Levo.

GP may not be able to get FT3 tested so you may need to do what hundreds of us here do and that is private testing with one of our recommended labs. Essential, though, that FT4 and FT3 are tested together.

Vitamins they say ok except D which is 24

Is that nmol/L or ng/L? I expect it's nmol/L in which case you are Vit D deficient. Have you been prescribed loading doses of D3?

Can you please post the other vitamin results, with reference ranges/units of measurement. If you've been told they are "OK" that just means they fall somewhere within the range, but it's where in range that is important, they need to be optimal for thyroid hormone to work properly.

As you are supplementing with B12, are you also taking a B Complex to balance all the B vitamins?

Bettle7 profile image
Bettle7 in reply to SeasideSusie

I’ve listed my test results.. can you let me know your thoughts please?

Bettle7 profile image
Bettle7

Hi,

Thanks for your response

Tsh 0.04 mu/L (0.20-5.00) normal range

Free T4 24 pmol/L (9.00-24.0)

Magnesium 1.01 mmol/L (0.70-1.00)

Vitamin D is 24. Minimum should be 50. I am on prescribed vitamin D of 20000iu which I have been taking for 2 months. Was twice a day now only once a week.

My GP has never tested FT3.

I am not taking B complex but just B12. I will be tested again in a few weeks but my tests now are only T4 and Tsh so I will try private blood tests as I’m only seeing a GP and not an endo. I was never given the print out for the other vitamin tests.

Thanks

SeasideSusie profile image
SeasideSusieRemembering in reply to Bettle7

Tsh 0.04 mu/L (0.20-5.00) normal range

Free T4 24 pmol/L (9.00-24.0)

You really need FT3 testing at the same time as FT4. You are obviously at the top of the range for FT4 but you don't know if you are converting T4 to T3 (T3 being the active hormone that every cell in our bodies need). If your FT3 is in the upper part of the range and balanced with your FT4 then you could probably reduce your dose a bit. If your FT3 is low in range with a high FT4 then your conversion is poor an you would benefit from a bit less Levo and the addition of T3. We can never get the full picture without FT3 being tested alongside the others, pity doctors don't realise this.

Vitamin D is 24. Minimum should be 50. I am on prescribed vitamin D of 20000iu which I have been taking for 2 months. Was twice a day now only once a week.

This will be nmol/L then. Presumably 24nmol/L was the level before you were prescribed D3? That is Vit D deficiency and requires loading doses of 300,000iu over a period of weeks. That was covered by your 20,000iu x twice weeky for 2 months. You now need to retest to find your current level then take an appropriate dose. The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level between 100-150nmol/L so this is what you should aim for, although your GP wont agree, they just go by whether or not you are within the "sufficiency" category.

Once you've reached the recommended level then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, 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 an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3 as recommended by the Vit D Council -

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 such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

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 if taking tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

Check out the other cofactors too (some of which can be obtained from food).

Are you having B12 injections or is B12 prescribed? A B Complex is necessary to balance all the B vitamins. Folate should also be checked because B12 and folate work together.

Good B Complex brands - Thorne Basic B and Igennus Super B. You wont get B Complex prescribed.

Important to test ferritin as well.

You wont get a print out of your results as a matter of course. Ask at your surgery's reception desk, we are legally entitled to our results here in the UK. Make sure it's a print out, mistakes can happen when given results verbally or if they are hand written.

Bettle7 profile image
Bettle7 in reply to SeasideSusie

Hi, many thanks for this. I will do blood tests at medichecks for FT3 and vitamins (ie thyroid check ultra vit) is it every Thursday that’s a discount day? I’ve noticed other comments referencing Thursdays. My only issue is whether I would get enough blood to put in the samples.

I’ve only supplemented B12 tablets to help with my anxiety.. so no prescription. I will look for these brands of B complex.

Thanks for the four hour advice as after my surgery I’ve never seen an endo so I’m still learning

Cheers

SeasideSusie profile image
SeasideSusieRemembering in reply to Bettle7

Yes, Medichecks have a discounted test every "Thyroid Thursday". Yesterday was the UltraVit at £75, it wont be at that price again for a few weeks. You can use discount code THYROIDUK for 10% off any test not on offer.

The Medichecks UltraVit requires 2 x microtainers each containing 0.8ml of blood.

Similar test at Blue Horizon requires only 1 x microtainer of blood, 0.8ml.

bluehorizonmedicals.co.uk/t...

Blue Horizon does Serum B12 whereas Medichecks does Active B12.

Blue Horizon does standard CRP test whereas Medichecks does CRP-high sensitivity test.

Bettle7 profile image
Bettle7 in reply to SeasideSusie

Hi Susie, just got my results from medichecks

0.1867 Tsh 0.27-4.2 miU/l

5.23 F3 3.1-6.8 pmol/L

21.2 F4 12-22 pmol/L

<10 T antibody <115ku/L

<9 TPA <34 Kiu/L

What does this mean?

Cheers

SeasideSusie profile image
SeasideSusieRemembering in reply to Bettle7

Bettle7

When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.

TSH: 0.1867 (0.27-4.2) - This is fine, it doesn't matter about being below range when taking thyroid hormone replacement (although most doctors will freak at a below range TSH because they're taught that is the only important result)

FT4: 21.2 (12-22) - this is 92% through range

FT3: 5.23 (3.1-6.8) - this is 58% through range

Your FT4 and FT3 aren't balanced, you aren't converting T4 to T3 well enough.

Good conversion needs optimal levels. It was suggested you get the full thyroid/vtamin test Thyroid Check UltraVit - where are your vitamin results?

Bettle7 profile image
Bettle7 in reply to SeasideSusie

Hi Susie, thanks for your response I didn’t do the vitamin test as I was worried about doing the finger prick and not getting enough blood. Will test for these. The advise that I was given from medicheck that my levels suggest overactive and I should reduce my levo. Do you agree or do I need the vitamins test first?

Cheers

SeasideSusie profile image
SeasideSusieRemembering in reply to Bettle7

The advise that I was given from medicheck that my levels suggest overactive and I should reduce my levo.

Unfortunately, the doctor's comments from these labs toe the NHS line. You can see that you are not "overactive" and by that they mean overmedicated because your TSH is below range, you can't be overactive if you've been diagnosed underactive and on Levo, your thyroid can't suddenly regenerate.

You can only be overmedicated if FT3 is over range. As you can see your FT3 is only 58% through range.

What you need to do is test your vitamins, not sure how you're going to do this now because they come as a bundle in the Thyroid Ultra or UltraVit test, it's the cheapest way of doing it. If you'd have done the Blue Horizon Plus Eleven test you would only have needed 1 x microtainer as mentioned, same amount of blood as for the Medichecks test you did.

If they're not optimal then your first step is to address any low levels or deficiencies and then see what your FT4 and FT3 are like then. Your conversion may improve with optimal nutrient levels, and your FT4 and FT3 may be better balanced.

You could ask if your GP will test B12, folate and ferritin.

Same here, TT due to multinodular goitre, mine followed by RAI ablation.

Knowing your blood test results is no help at all.

You really need to take NDT instead and you need to abandon all hope of ever getting any from the NHS.

Your chances of ever feeling well on any dose of any brand of levothyroxine are virtually nil.

Bettle7 profile image
Bettle7

Hi, how long have you been on NDT and how has this helped you?

pennyannie profile image
pennyannie

Hello Beetle

Just for reference a fully functioning thyroid would be giving you on a daily basis approx :-

100 T4 and 10 T3. I believe if one has lost one's thyroid through medical intervention it is only right and proper to have both these vital hormones on one's prescription.

Some people do well onT4 alone, being able to convert the T4 into the T3 : some people stop converting, and some people need to have both these hormones supplemented independently, and their levels monitored and adjusted to find the right balance of these two hormones to achieve a reduction in symptoms and an acceptable level of wellness.

In the first instance you could ask for a full thyroid blood test to include a T3 reading along with the vitamins and minerals as detailed on this site. You may find you need to undertake this yourself, but when with the results, people more able than me will advise the next steps.

Some people are able to receive a prescription for T3, many are not.

Some people wish to try Natural Desiccated Thyroid - the tried and tested treatment used up until the 1960s before Big Pharma made medicine, big business.

Some people find no help within the Nhs system in obtaining either T3 or NDT and resort to self medication of their preferred hormone replacements.

I'm in the last group of people, having had my thyroid ablated with RAI in 2005. and now replacing with NDT knowing I've made the right decision for me.

Bettle7 profile image
Bettle7

Hi, didn’t realise that normal T4 function was of 100 with T3. Will try and get F3 tested at medichecks. Thanks for your help. Much appreciated

You may also like...

Newbie, diagnosed with Hypothyroidism.

Hello :) Have been lurking on here for a while now, and have gained so much knowledge from your...

Newbie struggling with hypothyroidism

currently off sick because I am so exhausted and my eyes are so dry and causing me massive...

Understanding Hypothyroidism - newbie

Hey all, so I have routine thyroid blood tests as thyroid problems run in the family. I have been...

Hypothyroid? Newbie

satisfactory but they'd need to recheck which they have just done. I got a call to go back and...

Newbie!! Never seen a doctor for my Hypothyroidism.

said I have had no explanation from a doctor so I have little understanding of results. What I have...