A little advice please....

[MrsC68]

I was diagnosed hypothyroid in Sept/Oct last year (had previously been hyperthyroid very briefly approx. 10 years before). When I had my bloods retested in Dec my T4 was 16 (12.0-22.0) & my TSH was 3.59 (0.27 - 4.2). I had my bloods done 4 weeks ago and have just received a text to advise that though normal there is a big change from Dec (T4 21.8 & TSH 0.05) so need to be retested in 3 months. I am on 100mcg Levo - do these results mean I am taking too much? Or is this normal in the first year after diagnosis? I am 52y & menopausal ....

[Nanaedake]

How much levothyroxine were you taking in December. Do you have thyroid antibodies?

[MrsC68 in reply to Nanaedake]

I was taking 100mcg in Dec too. I have no idea about antibodies.

[fuchsia-pink]

Welcome to the forum.

Can you add the reference range for the free T4 test please - these vary from lab to lab [you can edit your post using the "more" button]

Did you have an early morning, fasting test blood [when TSH is highest] an leave a gap of 24 hours from your previous dose of levo? [if you'd recently taken your meds you will have a "false high" result]

And most important - how do you feel?

Next time, see if they will also test thyroid antibodies and key nutrients - ferritin, folate, vit D and B12 - and don't agree to a dose reduction if you feel well on your current dose until they've tested free T3 as well x

[MrsC68 in reply to fuchsia-pink]

*Post edited

Yes, my blood test was an early one and as far as I remember I didn't take my medication until after.

I did have the following investigations too:

B12 488ng/L (197.0-771.0)

Folate 8.3ug/L (1.9 - 25.0)

Ferritin 68ug/L (13.0 - 150.0)

Vit D 50nmol/L (50.0 -120.0)

I have just noticed that this test did involve T3 4.2pmol/L (3.1-6.8) but wasn't tested in Dec.

I have aches & pains in most of my joints and my hair is falling out by the handful (this hasn't improved at all since starting medication) but this could also be to do with menopause I suppose.

[fuchsia-pink in reply to MrsC68]

You are only medicated when free T3 goes over range - but your key nutrients aren't great. I'm tagging SeasideSusie for her excellent advice on what to do with vit D - which is dreadful - but folate and ferritin are both on the low side too - and these could be responsible for hair loss.

Don't blame stuff on the menopause until everything else is optimal! - but it sounds a bit miserable, so sending you a big (virtual) hug from the south coast x

[SeasideSusie Remembering in reply to MrsC68]

MrsC68

B12 488ng/L (197.0-771.0) ng/L is the same as pg/ml mentioned below.

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

So you're looking at increasing your level.

Folate 8.3ug/L (1.9 - 25.0)

Folate is recommended to be at least half way through range, which would be 13.5+ with your range.

A good quality, bioavailable B Complex should increase both your B12 and folate levels. Often recommended here are Thorne Basic B or Igennus Super B. Be aware that Igennus Super B contains Vit C and this can keep the body from using B12.

You could start with supplementing B12 sublingual lozenges 1000mcg along with the B Complex (to keep all B vitamins in balance) then once that pot of B12 has been used discontinue and just carry on with the B Complex.

For sublingual B12 I liked Cytoplan which has 2 active forms of B12

cytoplan.co.uk/vitamin-b12-...

Ferritin 68ug/L (13.0 - 150.0)

Ferritin is recommended to be half way through range (82 with that range) although some experts say that the optimal ferritin level for thyroid function is between 90-110.

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...

Don't consider taking an iron supplement unless you do an iron panel, if you already have a decent level of serum iron and a good saturation percentage then taking iron tablets can push your iron level even higher, too much iron is as bad as too little.

Vit D 50nmol/L (50.0 -120.0)

The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L.

To reach the recommended level from your current level, you could supplement with 4,000-5,000iu D3 daily.

Retest after 3 months.

Once you've reached the recommended level then you'll need a maintenance dose to keep it there, 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/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3.

D3 aids absorption of calcium from food and Vit 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 D3 as tablets/capsules/softgels, no necessity if using an oral spray.

For Vit D I like Doctor's Best D3 softgels which are a small softgel with just two ingredients - D3 and extra virgin olive oil to aid absorption.

For K2-MK7 I like Vitabay or Vegavero brands.

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

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.

[MrsC68 in reply to SeasideSusie]

Thank you. I have ordered the B12 Basic B complex & sublingual lozenges - already have magnesium & Vit D on order anyway (for the aches & pains). I will introduce them all slowly - at night and take the Levo in morning (is that correct?). Most of the responses have said to not change my Levo dose if I feel well but quite honestly I don't know that I do - I feel SO much better from initial diagnosis but have the aches/hair loss/weight gain (am dieting) but as you are suggesting it isn't only the Levo that I need to consider. Fingers crossed it will all come together shortly Not blooming cheap though is it? .....

[SeasideSusie Remembering in reply to MrsC68]

MrsC68

I will introduce them all slowly - at night and take the Levo in morning (is that correct?).

We have to keep supplements and other medication at least 2 hours away from Levo, some need 4 hours (Vit D and magnesium). B vitamins are best taken no later than lunchtime as they can be stimulating and disturb sleep, experiment and find the best time for you.

If, like me, you have to make a regular bathroom trip in the middle of the night, that's a good time to take thyroid meds (keep on bedside table with a glass of water) as it keeps it away from food, drink and other medication/supplements by a good few hours.

[pennyannie]

Hello MrsC and welcome to the forum :

When you went " hyper " before what was daignosed, did you have any treatment or did your thyroid right itself ?

There are 2 autoimmune thyroid disease that initially start with what's described as a hyper type phase Graves and Hashimoto's and the only way to tell them apart is by the antibodies that will have been found in your blood.

Graves is medicated with anti thyroid drugs to block your T3 and T4 rising any higher as this can be life threathening if not medicated.

Whilst with Hashimoto's your T3 and T4 levels come down by themselves and the hyper type phase is transient. However over time you will find that you become hypothyroid and need thyroid hormone replacement to compensate for your thyroid's erratic production as it is being systematically destroyed from attacks by your immune system response.

You are only over medicated when your T3 is over range - and this hasn't been tested - so if you feel well where you are, I'd suggest you ask to stay on this dose.

No thyroid hormoe replacement works optimally until ferritin, folate, B12 and vitamin D are optimal -

Your TSH at 3.59 was too high - did you get a dose increase then - as that is when your T4 jumped up - I wonder if your conversion of T4 into T3 has changed?

Do you have a blood test first think in the morning and refrain from taking your daily dose until after the blood draw, and fast overnight just taking in water ?

[MrsC68 in reply to pennyannie]

When I was diagnosed as hyperthyroid, I didn't have any further investigations. I was put on Carbimozole for approx. 6m and to be truthful I kept forgetting to take them, didn't feel ill so stopped taking them and when I was retested everything had gone back to normal.

I had my TFTs tested last Feb and all normal but during lockdown last summer I was depressed, losing a lot hair, weight gain, exhausted etc. so GP retested and I was diagnosed with hypothyroidism at beg of Sept and put on a starting dose of 50mcg, and this was put up to 100mcg following b/test in mid Oct.

My blood test was an early one and as far as I remember I didn't take my medication until after.

I did have the following investigations too:

B12 488ng/L (197.0-771.0)

Folate 8.3ug/L (1.9 - 25.0)

Ferritin 68ug/L (13.0 - 150.0)

Vit D 50nmol/L (50.0 -120.0)

I have just noticed that this test did involve T3 4.2pmol/L (3.1-6.8) but wasn't tested in Dec.

[pennyannie in reply to MrsC68]

Did you see any antibody blood test results anywhere at any time ?

[MrsC68 in reply to pennyannie]

I'm not completely sure - I have emailed my GP reception to request copies of all my b/tests since Jan'20 so I will let you know

[pennyannie in reply to MrsC68]

I think you also need to find out why you originall were told you were " hyper " 10 years ago and need access to these records unless you alread have copies somewhere.

Being " hyper " is seen as " life threatening " if not medicated :

Do you remember taking anti thyroid drugs like Carbimazole or PTU and being referred to the hospital ?

Or, do you remember this phase passing in it's own time with no medication, as would be the case if with Hshimoto's antibodies in your blood analysis.

[MrsC68 in reply to pennyannie]

I don't have copies of my results now but was definitely hyper - took carbimazole for a while, not very regularly once I started to feel better and once I was retested all had gone back to normal. Was never referred to endo.

[pennyannie in reply to MrsC68]

Well, that would be when the antibodies should have been tested as these make up the medical evidence and proof of which AI thyroid disease you are dealing with and what, if any, medication needs to be prescribed.

Graves antibodies can wax and wane throughout one's life and it's generally accepted to be a stress and anxiety driven AI disease.

We have seen AT drugs prescribed for those dealing with Hashimoto's AI disease as initially both these diseases present with hyper symptoms and the only difference is found in the antibody blood analysis.

Hopefully you more recent results may show some antibody levels for Hashimoto's as T4 - Levothyroxine would not be prescribed if your Graves antibodies were active then.

To be honest when I was diagnosed with Graves in 2005 I was exhausted and suffering insomnia and dry gritty eyes, and the " hyper type " symptoms one reads of only hit me when I had already been on the Carbimazole for around a year.

[MrsC68 in reply to pennyannie]

I've had the results from my GP surgery:

Range: T4 12.0-22.0 TSH 0.27-4.2 T3 3.1-6.8

24/07/12: (T4) 40.7 (TSH) <0.01 (T3) 17.8 *started on Carbimazole

11/12/14 (T4) 14.9 (TSH) 1.74 *had stopped taking meds

03/02/20 (T4) 19.1 (TSH) 0.23

26/08/20 (T4) 8.8 (TSH) 40.1 * started on Levo 50mcg

16/10/20 (T4) 12.9 (TSH) 24.2 *increased dose to 100mcg

02/12/20 (T4) 16 (TSH) 3.59

21/04/21 (T4) 21.8 (TSH) 0.05 (T3) 4.2

They didn't send any TPO results so I guess I haven't had them tested. So with all of those results do you think there is anything further I need? Or is it just teething troubles with a new diagnosis?

[pennyannie in reply to MrsC68]

I think this looks very much like Hashimoto's AI thyroid disease and the antibodies not run as your results are " in range " :

The high TSH levels are a sign of needing more thyroid hormone medication.

The " blip " in results most likely the result of a further attack from your immune system on your thyroid causing erratic thyroid hormone production.

These phases are generally short lived and as your thyroid becomes further disabled you will most likely need an increase in your thyroid hormone production.

Having addressed this message to " me ' whilst flattered I'd prefer everybody to see these results so am highlighting people more able than myself :

Hope this works as I'm not very good at this SlowDragon

[SlowDragon Administrator in reply to MrsC68]

Request GP test thyroid antibodies

NHS usually only test TPO thyroid antibodies. Some Hashimoto’s patients only have high TG thyroid antibodies

20% of Hashimoto’s patients never have high thyroid antibodies and ultrasound scan of thyroid can help diagnose

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

Vitamins need improvement as first step

Posts about ultrasound

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

[SlowDragon Administrator in reply to MrsC68]

If GP unhelpful, get tested privately

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...