TSH high on 100mcg Thyroxine ferrtin low advice... - Thyroid UK

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TSH high on 100mcg Thyroxine ferrtin low advice please

Pp1978 profile image
14 Replies

I have been taking thyroxine for over 20 years( I’m 44 now) and requested blood check with GP as I’ve been feeling cold, lethargic and exhausted. I’ve also had a change in my menstrual cycle and been having my periods every 3 weeks.

TSH 30.1 (0.55-4.78)

Serum Free T4 18.8 (9.5-22.7)

Ferritin 7 (10-291)

GP has started me on ferrous fumurate twice a day and wants to review thyroid bloods in 6months and said no action is required.

Does this sound right? TSH for me has always been 1-2.

I spoke to him and asked for referral/ further checks but he said it wasn’t needed!

I’m looking to book in to see an endocrinologist privately and would be grateful for any advice/ anything I should be Aware of before attending.

I’m new to this forum and would like to thank in advance. I wasn’t even aware before about having blood tests early etc

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Pp1978
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14 Replies
SlowDragon profile image
SlowDragonAdministrator

Absolutely not

Presumably you do remember to take levothyroxine everyday without fail. Always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after

Iron, vitamin D, magnesium, calcium, HRT or PPI all need to be minimum 4 hours away from levothyroxine

Which brand of levothyroxine are you currently taking

Do you take levothyroxine waking or bedtime

Make an appointment with different GP

Request retesting of thyroid levels including Ft4 and Ft3

Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

First thing to check is that first test high TSH was correct

It’s possible to have interference with test

Also request vitamin D, folate, B12 tested at same test

Pp1978 profile image
Pp1978 in reply to SlowDragon

Thank you so much for your reply. I always take thyroxine first thing in the morning with glass of water and minimum 45 mins before eating breakfast. I’ve been taking iron/ vitamins at lunchtime and dinner

I recall TSH being 18 a year ago but then went down when repeated.

The brand I take is mercury pharma?

Thank you for advising me about the Other tests as I will request this when I see the endocrinologist

SlowDragon profile image
SlowDragonAdministrator

False high TSH due to 🐁 antibodies

academic.oup.com/clinchem/a...

ncbi.nlm.nih.gov/labs/pmc/a...

Pp1978 profile image
Pp1978

This is interesting 🤔

SlowDragon profile image
SlowDragonAdministrator in reply to Pp1978

Suspect you do need dose increase in levothyroxine

Essential to test Ft4 and Ft3

Obviously ferritin is a big problem at moment too

If under medicated then vitamin D, folate and B12 are likely low as well

Approx how much do you weigh in kilo

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

Pp1978 profile image
Pp1978 in reply to SlowDragon

I weigh 52kg and currently on 100mcg. Last year I was taking 100mcg during th week and 125mcg on weekends. I really do appreciate your advice. I’m so fed up of feeling tired all the time and when the GP was dismissive of the results, I felt like it was all in my head.

I have now got a clear idea of what tests I need to ask for.

SlowDragon profile image
SlowDragonAdministrator in reply to Pp1978

Essential on levothyroxine to have GOOD vitamin D, folate, ferritin and B12

These should be tested at least annually

What vitamin supplements are you currently taking apart from ferrous fumerate

Pp1978 profile image
Pp1978 in reply to SlowDragon

I think this is what I need to look into more detail. I take the vitabiotics vitamin D and the immunace vitamins. I feel this is where I need to improve and didn’t realise the effect It had on the thyroid.

Are there any that you could recommended

SlowDragon profile image
SlowDragonAdministrator in reply to Pp1978

How much vitamin D are you currently taking

Multivitamins are never recommended on here

Too little of what we do need, frequently cheaper poorly absorbed ingredients and most contain iodine not recommended for anyone with autoimmune thyroid disease

Is it this multivitamin

vitabiotics.com/products/im...

Test levels first and come back with new post once you get results

Pp1978 profile image
Pp1978 in reply to SlowDragon

Thank you. I’m seeing an endocrinologist next Friday and will post results.

SlowDragon profile image
SlowDragonAdministrator in reply to Pp1978

Perhaps consider delaying consultation until got full thyroid and vitamin testing done?

Is this endocrinologist from the thyroid U.K. list?

humanbean profile image
humanbean

I’ve also had a change in my menstrual cycle and been having my periods every 3 weeks.

Ferritin 7 (10-291)

Many years ago (in my teens) I had very heavy periods beginning every 16 days and lasting for about a week. It turned out that I was anaemic. Taking iron supplements (and presumably reducing the severity of my anaemia) had the effect of reducing the blood loss I put up with and increased the time between them.

Unfortunately for me, doctors have always thought that ferritin levels only need to be just in range to be "normal". I have spent most of my adult life feeling as if I am permanently low in iron, and my ferritin has chugged along the bottom of the range. I had to fix my own iron and ferritin levels in the end, by buying my own iron supplements and paying for my own testing.

Some links you might find helpful :

irondisorders.org/wp-conten...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Before considering booking any private consultation you must get FULL Thyroid and vitamin testing

Always private test thyroid levels early Monday or Tuesday morning, ideally before 9am and last dose levothyroxine 24 hours before test

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

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

bluehorizonbloodtests.co.uk...

Come back with new post once you get results

Vast majority of endocrinologists are diabetes specialists and useless for thyroid

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

tukadmin@thyroiduk.org

phenelope profile image
phenelope

I am constantly having to change, as the medicines are reformulated. See thyroid reformulation in France. For some people, but not all, the addition of mannitol as an excipient neutralises the drug involved. Eltroxin worked well for me for a long time. Now not.

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