T4 crazy results any ideas?

[irishacres]

Hi all hope you had a good Christmas.

I need help in finding out what’s wrong with me as the doctors don’t know.

I have been unintentionally losing weight for the past year. 4 stone+ now. (From clothes size 16-18 to size 8). All Thyroid results normal for me during that time.

Until August when my T4 was slightly high at 22.7 only 0.7 over but to appease my doctor I reduced my levothyroxine by 50mcg per week. T3 was normal at 3.6

In December, because of the weight loss my GP wanted to do full body CT scan but said the hospital wanted bloods first I went for the tests and the results were shocking as they were only taken a few months after the previous ones. The only difference was this was a fasting blood test my TSH was <0,01 but T4 was 32.7! T3 was normal at 4.5

The day after I went to see the Head and Neck Consultant as I also have inflamed lymph nodes in my neck and the GP found a lump on my thyroid I am having an ultrasound for this next week. He said I should also see my Endo as well but I can’t see him until the end of February.

whilst I was at the Hospital I went and had the Thyroid blood tests my Endo had asked for after reducing my Levothyroxine. The test came back at T4 as 29.7

I know I have other conditions to deal with but can anyone explain why my T4 would shoot up so rapidly when the other tests are normal after reducing my Levothyroxine ?

This has never happened in the 30 years I’ve had hypothyroidism, which is now classed as hyperthyroidism. The only thing that has changed has been my brand of levothyroxine which has always been Tevo but has changed.

Any ideas would be welcome. Thank you x

ps I also have high B12 now (I have injections) they went from 700 to 1476 and low folate levels of 2.8 I don’t know if that’s relevant

[Buddy195 Administrator]

Can you supply ranges for your tests irishacres (in brackets after the results) as these can vary between laboratories.

Can you confirm which Antibody tests you have had in the past and the results.

 Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:

TRab

TSH receptor antibodies

TSI

Thyroid-Stimulating Immunoglobulin

TPO & TG antibodies may be Graves or Hashimotos.

 TPOab

Thyroid Peroxidase antibodies

TGab

Thyroglobulin antibodies

I was originally misdiagnosed as Graves/ hyper thyroid (with weight loss/ palpitations/ tremors) as later antibodies confirmed Hashimotos/ underactive thyroid.

I would 100% push for correct antibodies to be tested if hyperthyroidism/ Graves now suspected.

Did you have a coeliac test, as recommended in your last post by crimple & others?

[irishacres in reply to Buddy195]

Hi Buddy 195 Thanks for your reply. My GP has no idea on the complexities of thyroid problems. My original Endo was wonderful but obviously he left and I have not had a F3F meeting just yelephone calls once a year. I have insisted on F2F but have to wait until end of February. Because I have been hypothyroid for 30 years I have been forgotten until I moved to my current GP. The only antibody tests I have had is for parietal cell autoantibodies which was positive but I don’t know if this is for thyroid or not. My ranges are in my original post. Before that they were within normal ranges.

I was refused the celiac test as not necessary. After looking on here this morning I have noticed that people are not able to get the TEVA levothyroxine. I have been on this for 30 years but my pharmacy was changed by GP. I have just checked with pharmacy and they changed it to Mercury Pharmacy brand. I wasn’t aware of that and wonder if this is relevant.

[Buddy195 Administrator in reply to irishacres]

Although changes in brands can cause adverse symptoms, it’s highly unlikely that a change to Mercury Pharma would cause such a dramatic rise in FT4 levels. Have you rechecked that the dosage is the same (ie no pharmacy error)?

If your GP is unwilling/ unable to conduct the recommended tests, I would look to do this privately.

[irishacres in reply to Buddy195]

Thanks I have been thinking of going private as my family are concerned about my weight loss and the results.

Which antibody tests have you the diagnosis of Hashimotos?

[Buddy195 Administrator in reply to irishacres]

See my first reply for a summary of thyroid antibody tests. It’s really important that they test for Graves antibodies ( TRab or TSI) if hyperthyroidism is suspected.

[DippyDame]

Can you give us reference ranges for results please.

Have you had both TPO and Tg thyroid antibodies tested for Hashimoto's.

Hashimoto's can cause thyroid levels to fluctuate....is it possible this might be Hashi flare. If so it is transient and should eventually settle again in time

High FT4 suggests that your T4 may no longer be ((adequately)converting to T3 and FT4 is consequently rising. This rise could have been happening over a period of time

We really need to see current FT4 and FT3 levels to check this.

We need to compare the results.

"Normal" isn't an adequate description of results...it means very little. Similarly " within range" is not good enough

It is the actual point/ result in relation to the ref range that is important.

Are you sure you have had the correct T4 dose prescribed and/ or dispensed

Just a few ideas.

[irishacres in reply to DippyDame]

Sorry I misunderstood.

In August

TSH <0.01. (0.27 - 4.20mlU/L)

T4. 22.7. (12 - 22 pmol/L)

T4. 3.6. (3.10. - 6.8. pmol/L)

On 15th December

TSH <0.01

T4. 32.7

T4. 4.5

On 22 December my Endo told me the blood test done at hospital was FT4 29.7 I presume TSH and T 3 were as before because he didn’t mention them

Hope this is what you needed Thank you!

[SlowDragon Administrator]

weight loss and vitamin deficiencies both need coeliac blood test

Presumably you have autoimmune thyroid disease (hashimoto’s) too

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

Post 5 months ago

healthunlocked.com/thyroidu...

Strongly recommended back then you get FULL thyroid and vitamin testing

Definitely test now

Are you in the U.K.

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

High parathyroid level

possible hyperparathyroid issue

How much vitamin D are you taking

You need vitamin D, parathyroid and calcium levels tested together. This needs to be done at a hospital phlebotomy department as must be processed instantly

[irishacres in reply to SlowDragon]

Thank you so much for all of the above information. In answer to your questions

I have never been tested for

Hashimotos

Celiac Disease

Nor any antibody tests

I am in the UK

I have 3 monthly B12 injections but I don’t think it’s being absorbed as it has gone from 700 in April to 1476 in August and is still at that level.

I take Vit D capsules 800 unit Fultium D3 per day

Although F4 now 29.7 I have no symptoms of overactive thyroid other than unintentional weight loss of 4 stone in 12 months. I still have most of underactive symptoms.

With regards Celiac disease I do have silent reflux, prolonged fatigue, folate deficiency I don’t eat dairy (other than milk) nor bread.

I do have a lot of auto immune disorders I.e. Vitiligo, sjorgrens disease, psoriasis, auto immune antral gastritis etc

I also have Hyperparathyroidism I am having an ultrasound on Tuesday as I have swollen lymph glands in my neck and GP felt lump near thyroid. I do have calcium checked as part of liver function test in November the adjusted calcium level was 2.70 (2.15 - 2.55 mol/L

Many thanks for all the useful info 😁

[SlowDragon Administrator in reply to irishacres]

So you need to test thyroid including Ft3, both thyroid antibodies and all four vitamins

With other autoimmune diseases and dairy and gluten intolerance it’s guaranteed your hypothyroidism is Hashimoto’s

Very likely extremely low Ft3 …..hence hypo symptoms

These results

TSH <0.01

T4. 32.7

T4. 4.5

that’s presumably Ft3 4.5 …not T4

Similarly

In August

TSH <0.01. (0.27 - 4.20mlU/L)

T4. 22.7. (12 - 22 pmol/L)

T4. 3.6. (3.10. - 6.8. pmol/L)

That’s Ft3 3.6 (3.1-6.8)

Shows absolutely terrible conversion rate

High Ft4 due to poor conversion

But Ft3 remains far, far too low

If GP unhelpful test privately via Medichecks or BH

[irishacres in reply to SlowDragon]

sorry you are right about the results the third one was T3. I’m really grateful for all your advice. Now I can spend the weekend swotting and finding someone who knows what they are talking about. My Endo has just cancelled F2F appointment on 21st Feb to the end of March!! My GP referred on a 2 week wait urgent. I have no faith in him at all he just doesn’t care by the sound of it. This all needs to be sorted quickly because if this is not the cause of my weight loss (yes even over Christmas, despite overeating as usual., then my GP will send me for a full body scan.

Bless you for all your help today it’s much appreciated I will let you know how I get on. 🤗

[greygoose]

How long was the gap between your last dose of levo and the blood test?

[irishacres in reply to greygoose]

24 hours and only water before. 9am test

[greygoose in reply to irishacres]

OK, so before you agree to accept a diagnosis of 'hyperthyroidism', insist that you want your antibodies checked:

TRAB or TSI for Graves'

TPO and Tg antibodies for Hashi's.

If it's Hashi's it's certainly possible for the FT4 to leap up like that. Whereas I don't think it would be with Graves' - and the FT3 would also be high. But, best to try and get both tested to be sure because doctors love leaping to conclusions without doing the proper testing, which must be discouraged.