End of my tether - hypothyroid or am I crazy? - Thyroid UK

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End of my tether - hypothyroid or am I crazy?

KC0587 profile image
17 Replies

I have had what I believe to be hypothyroid issues for 10+ years.

during the years I have had multiple blood tests.

All reportedly ‘normal’.

I have a GP appointment in the morning as I have said I’m not happy with my thyroid levels and am convinced there is something wrong due to all of my previous bloods being the same.

Would appreciate any guidance to ensure I’m not fobbed off or if you completely agree with the GP that all is ok then I will happily listen too.

I feel I have every symptom under the sun; main ones currently being thinning hair, weight gain and tiredness

TSH is always lower end of normal

T4 always lower end of normal and has been out of range

T3 lower end of normal

Ferritin under or sits around 22

Last bloods -

October 24

TSH 0.82 (0.27-4.2)

T4 14.2 (12-22)

T3 3.7 (3.1-6.8)

Ferritin 22 (13-150)

Vitamin D3 57.2 (>50 ok)

folate 9.0ug

B12 592 (197-771)

calcium 2.25 (2.2-2.6)

Hb 137 (115-160)

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KC0587 profile image
KC0587
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17 Replies
Jazzw profile image
Jazzw

Looking at your other posts, your GP surgery has consistently ignored your woeful ferritin levels and doesn’t seem to be aware that there’s a condition known as central hypothyroidism/secondary hypothyroidism.

Have you had conversations about both? What has the doctor had to say when you do?

KC0587 profile image
KC0587 in reply toJazzw

Yes I have.

I’ve also requested different doctors and they all say the same, which then makes me feel like I am making it all up!

I recently raised concerns that I could have a pituitary issue and was shot down so quick. I’ve been told I don’t have a thyroid problem as my levels are always normal.

I have just moved GP surgery because of the above and tomorrow is my first appointment

Agitator23 profile image
Agitator23 in reply toKC0587

Hi

I had a similar pattern of blood test results as you. I managed to get treatment after presenting evidence of my TSH never rising when my T4 fell. If you look in my biog, you'll see how I managed to convince my GP that I have central hypothyroidism. This has been confirmed by a private endocrinologist.

My blood results were always 'normal', that is, never out of range. They were definitely not normal for me, though, and caused awful symptoms over two decades.

I'm on 112.5 mcg Levothyroxine at the moment and I feel like a different person. Still some ongoing symptoms but a huge improvement on other symptoms.

DippyDame profile image
DippyDame

I always look at FT3 first because T3 is the essential thyroid hormone....yet medics fail to understand this.

You are hypothyroid!

Your labs...

FT4 14.2 (12-22) ...your result is 22% through the reference range

FT3 3.7 (3.1-6.8).....your result is 16.22% ditto

We aim to have both Frees approaching 75% through their respective reference ranges.

Without looking elsewhere it is immediately obvious you are suffering from low thyroid hormone/ hypothyroidism

You should be given a starter dose of 50mcg levothyroxine and will need a further test 6 weeks after initiation of treatment

Based on the new labs you will inevitably need a further increase to 75mcg followed by another test in 6 weeks

This increase/wait/test protocol should continue until symptoms are relieved and lab %age through ref ranges raised using this easy calculator

thyroid.dopiaza.org/?utm_so...

Your ignorant medics have been relying on TSH which is not a reliable marker....this error is causing misery for hundreds of patients

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

and...

thyroidpatients.ca/2021/07/...

Medic undergrads are taught to monitor by TSH....a disaster!

Your nutrients also need to be optimised to support thyroid function.

I'm so sorry you have been left feeling unwell...time to educate those medics and get your health improved

It's late and I'm recovering from laser eye surgery so must stop here tonight but feel free to ask as many questions as you wish.

KC0587 profile image
KC0587 in reply toDippyDame

Thank you - this is really useful to go armed with tomorrow

Sleepman profile image
Sleepman

Ask for TPO antibody test to see if autoimmune type. NHS will only do this one.Call levo a trial ...

KC0587 profile image
KC0587 in reply toSleepman

Thank you! I will request this today

jimh111 profile image
jimh111

Your TSH is rather low for your combined fT3, fT4. This can suggest central hypothyroidism but also non-thyroidal illness (NTI). NTI occurs when there is another reasonably substantial illness, this causes reduced TSH and lower fT3 levels. You have asthma, is this severe? Or do you have another illness?The general approach with NTI is to wait until the patient is better but this doesn't make sense with chronic illness. Whatever the cause your hormone levels are low and a trial of thyroid hormone would make sense.

KC0587 profile image
KC0587 in reply tojimh111

Would it be NTI over that many years?

We also have a significant family history

Will definitely mention a trial of Levo

KC0587 profile image
KC0587 in reply tojimh111

My asthma is mild. Controlled with inhalers but only diagnosed around 2019.

jimh111 profile image
jimh111 in reply toKC0587

Unlikely to be NTI then.

KC0587 profile image
KC0587 in reply tojimh111

Thank you. Unfortunately the GP disagreed and I am having a baseline blood test to include PCOS bloods and then to take ferrous fumurate for 8 weeks and repeat bloods

Hedgeree profile image
Hedgeree

Hi KC,

Unfortunately your experience is familiar to many others on the forum myself included.

Suggesting a trial of levothyroxine is a good idea.

Hope your appointment goes well?

KC0587 profile image
KC0587 in reply toHedgeree

Thank you. Unfortunately the GP disagreed and I am having a baseline blood test to include PCOS bloods and then to take ferrous fumurate for 8 weeks and repeat bloods

SlowDragon profile image
SlowDragonAdministrator

post 8 months ago

healthunlocked.com/thyroidu...

And similar suggestion previously 4 years ago

Strongly recommend getting FULL thyroid including BOTH TPO and TG antibodies

You never answered 8 months ago re possible reasons for extremely deficient ferritin levels

Are you vegetarian or vegan

Pre or post menopause

Have you had full iron panel test via GP

Were you prescribed iron supplements

Aiming to improve ferritin to at least 70

KC0587 profile image
KC0587 in reply toSlowDragon

Hi

Sorry that I never replied.

There are no reasons for iron deficiency.

I eat read meat, green vegetables and at times have been prescribed ferrous fumurate previously which was stopped.

Pre menopause - age 37.

Full iron blood tests have been completed and all within a normal range other than ferritin. HB was mid range.

RBC above high reference limit.

SlowDragon profile image
SlowDragonAdministrator in reply toKC0587

So work on improving low ferritin with iron rich diet

red meat daily. Liver or liver pate once a week

Etc etc

get tested via Medichecks 3-4 times a year if taking iron supplements

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

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