Can someone please help me with understanding w... - Thyroid UK

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Can someone please help me with understanding what might be happening

Cablogin profile image
9 Replies

This is my recent bloodsI asked for a reduction in meds 7 weeks ago

On 100mcg I was around 0.02 on my test 7 weeks ago ft4 was 19

It's now 75mcg levothyroxine 0.01 and ft4 is 12

I have been on 100mcg of levothyroxine for 14 years do I need to reduce my meds again?

A family member has graves also, I currently have hashimoto's could this be the issue?

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Cablogin profile image
Cablogin
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greygoose profile image
greygoose

Your FT4 now looks like it might be low, but without the range it's impossible to say for sure. Can you add the range, please?

You should not be dosing by the TSH. It's not a problem if it's below range. The FT4 level is far more important - FT3 is the most important but as that's rarely tested...

Having Hashi's most certainly can affect levels. But how long was the gap between your laswt dose of levo and the blood draw? And what time of day was the blood draw? Because those things can also have an effect.

Cablogin profile image
Cablogin in reply togreygoose

The range for tf4 is 7 to 20I had bloods at 8.30am same time as my test 7 weeks ago and I also skip taking my meds so I wouldn't of taken levothyroxine for 24 hours to the bloods I take it afterwards

Unfortunately the drs on nhs only go by tsh and I am not feeling well at all I'm so hungry poor sleep and having random anger and my periods are destroying my to a point I can barely move

My folic acid is a tad low which I've just ordered meds for my iron is 25 currently and b12 is 600

greygoose profile image
greygoose in reply toCablogin

So, your FT4 was too high before the first reduction. But, as you were only taking 100 mcg levo that either means that you were having a bit of a Hashi's 'hyper' swing, or that you are a poor converter. But to know how well you convert, you need to have FT4 and FT3 tested at the same time, and compare them. Perhaps you could test privately?

I know the NHS only goes by TSH, and it is so, so wrong! You do need to fight that as best you can if you want to get well.

If you are hungry, eat! That's what you get hungry for, to incite you to eat - the body knows what it's doing. And by the sound of it, you need to eat more iron-rich foods.

Folic acid is not going to do you much good. You would probably do better with a methylated B complex. The Bs all work together and need to be kept balanced. Just taking one isolated B vit is not recommended.

Cablogin profile image
Cablogin in reply togreygoose

What does it mean if I'm a poor converter? What kind of things are done to help?I have no idea how to fight at this point I'm constantly dismissed they're happy leaving me with my tsh being 0.01 too I saw an endo in 2016 and they also dismissed me told me I'm just depressed my tsh was 3.5 back then on 100mcg of levothyroxine

I think in my previous post you said it looks like I'm at around 60% converting I think something like that

My hunger is causing rapid weight gain so it's not ideal, I lost 5lb within 10 days of changing my dose then I've regained 3lb in the past 2 weeks

I will look into the b vitamins and see if I can get them in town today

greygoose profile image
greygoose in reply toCablogin

What does it mean if I'm a poor converter?

It means that your FT3 is too low.

You are taking levo, which is T4. T4 is basically a storage hormone that doesn't do much until it is converted into the active hormone, T3.

If you are a poor converter, your FT4 will rise too high whilst your FT3 stays too low.

What kind of things are done to help?I

Poor conversion can be caused by all sorts of things, and you can't always find out what is causing it. The first thing to do is to make sure all your nutrients are optimal. And to make sure you're eating enough! No low-calorie diets. You need calories to convert. But sometimes it's just the fact of having Hashi's makes you a poor converter, and there's nothing you can do about that except take T3 along with your levo. And that's easier said than done!

It doesn't matter if your TSH is 0.01. That won't affect you in any way. It's your FT3/4 levels that are important.

Doctors have very little understanding of thyroid. They're just not taught about it in med school. Which is why we have to learn as much as we can and insist on getting the right treatment.

Your hunger is not causing rapid weight gain, you hypothyroidism is causing it. And by depriving yourself of food you will make yourself even worse. The body will go into starvation mode and put on fat, whereas hypo weight-gain is usually water-retention which will not be affected by how much you eat. You need optimal T3 levels to lose the weight, not low-calorie diets.

SlowDragon profile image
SlowDragonAdministrator

You need FULL thyroid and vitamin testing

What vitamin supplements do you normally take

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum especially with Hashimoto’s

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

VERY important to test TSH, Ft4 and Ft3 together

NEVER reduce dose based only on TSH and Ft4

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 BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

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

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

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

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

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...

SlowDragon profile image
SlowDragonAdministrator

vitamin levels

My folic acid is a tad low which I've just ordered meds for and b12 is 600

Do you currently take any B12

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help maintain B12 levels

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week

Post discussing different B complex

healthunlocked.com/thyroidu...

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

SlowDragon profile image
SlowDragonAdministrator

my iron is 25 currently

Is this ferritin result?

What’s the range

If it’s ferritin level it’s very low

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

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...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Low vitamin levels tend to lower TSH because conversion of Ft4 (levothyroxine) gets worse…..resulting in higher Ft4 and lower Ft3

ESSENTIAL to also test vitamin D

How much vitamin D are you taking

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Cablogin profile image
Cablogin in reply toSlowDragon

25 is my ferritin yes, I've been taking 210mg twice a day of ferrous fumarate past 3 months to bring it from 19 to 25 as a doctor refused to help me with my levels, I'm wanting it around at least 70 to 100 range

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