Blood tests: So after 3 phone calls to my... - Thyroid UK

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Blood tests

Kimkat profile image
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So after 3 phone calls to my endocrinologists secretary for a copy of my bloods taken in November , I have finally managed to get them. Even though I asked for full bloods this is all that I have been sent, so beggars can’t be choosers I suppose.

Could someone give me a bit of advice on how these are looking please.

I had RAI 3 years come May/June and I am taking 50 mcg of Levo.

Thank you in advance.

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Kimkat
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SeasideSusie profile image
SeasideSusieRemembering

Kimkat

I am taking 50 mcg of Levo.

TSH: 6.29 (0.3-5.0)

You were undermedicated at that time. Has your dose of Levo been increased? You needed an extra 25mcg and retest 6-8 weeks later. Or are you still taking only 50mcg Levo?

The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper parts of their reference ranges, if that is where you feel well.

Kimkat profile image
Kimkat in reply toSeasideSusie

I had my levo increased earlier after asking for it myself. I intend to speak to the secretary again and hopefully get another increase asap.

SeasideSusie profile image
SeasideSusieRemembering

Kimkat

Ferritin is very low in range, it's recommended to be half way through range. If not already done I would ask for an iron panel to see if you have iron deficiency and a full blood count to see if you have anaemia. We shouldn't supplement with iron tablets unless these are done.

Folate is recommended to be at least half way through range, yours is on the low side and would be better at 11+ with that range. Consider a good quality, bioavailable B Complex such as Thorne Basic B or Igennus Super B, this will raise your folate level and will also help improve your B12 level which is only just about OK and would be better around 900-1000ng/L 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 (or ng/L) to at least 450 pg/ml (or ng/L) 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 (or ng.L)."

When taking a B Complex this should be left off for 7 days before any blood test (including thyroid) as it contains Biotin and if the lab also uses Biotin in it's testing procedure (which most labs do) then it can give false results.

SlowDragon profile image
SlowDragonAdministrator

You need vitamin D tested too

Test twice yearly via

vitamindtest.org.uk

What vitamin supplements are you currently taking

You’re currently very hypothyroid

Dose should be increased to 75mcg daily and bloods retested 6-8 weeks later

Was dose increased?

Likely time for next test if was

What brand of levothyroxine are you currently taking

Many people find Levothyroxine brands are not interchangeable.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Are you currently taking Teva?

Teva, Aristo and Glenmark are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Note Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/medications-f...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

Kimkat profile image
Kimkat in reply toSlowDragon

I realised that there’s no Vit D after I sent my message, so annoying as I specifically asked for full range. I take the Betteryou Vit D spray, I also take my Levo in the middle of the night as otherwise my other meds would interfere with it. Mercury pharma works best for me as the others give me 24/7 headaches. I didn’t expect to get a T3 but I will ask when I ring back and probably make a nuisance of myself, the secretary did say that the consultant will ring me at some point but I won’t hold my breath.I can’t understand the way that the results have been typed if I’m honest, with all of the in brackets numbers, are they my previous results ? And what is the triangle in front of my TSH, would you happen to know?

SlowDragon profile image
SlowDragonAdministrator in reply toKimkat

I assume the Triangle in front of TSH means it’s too high and/or has gone up

So when test was done .....how long before test was last dose levothyroxine ?

Ft4 is too low, should be around 19-20 minimum

Presumably you had 25mcg dose increase in levothyroxine

Ferritin is terrible.

Did endocrinologist organise full iron panel test for anaemia.

Are you currently taking any iron supplements

Are you vegetarian or vegan

Kimkat profile image
Kimkat in reply toSlowDragon

I always delay my Levo prior to blood tests ass as you have advised previously, I had my tests at 8.30 then immediately took my Levo afterwards, I had delayed my previous dose by 4 hours so that it wasn’t too messed up.

My last increase of Levo was around 11-12 weeks before this test.

I’m not vegan or veggie and no I’m not taking any iron supps, as I was hoping to discuss this with the endo but my December telephone consultation was yet again cancelled, I’ve got so many questions to ask him when I eventually do get to talk to him but not much chance at the moment.

SlowDragon profile image
SlowDragonAdministrator in reply toKimkat

He should have contacted you and increased levothyroxine by 25mcg

Also should have organised full iron panel test for anaemia and vitamin D test

Generally pretty useless

Is this NHS or private?

Email Thyroid UK for list of recommend thyroid specialist endocrinologists.......NHS and Private

tukadmin@thyroiduk.org

Ask your GP for dose increase in levothyroxine.

Also full iron panel test for anaemia and vitamin D testing

Kimkat profile image
Kimkat in reply toSlowDragon

This is NHS but I’m seriously considering going privately, I just don’t feel as if he takes that much notice of me and he’s a stickler for nhs guidelines so my guess is that he’s sticking to the tsh reading too rigidly. I’m going to ring again tomorrow, to request extra bloods at my gp surgery but I do expect them to put me off, if so I’ll ring the endo again if that’s the case. I think he’s more of a diabetic consultant so I’ll be looking into a thyroid specialist I think. Thank you for your advice, very informative as always.

SlowDragon profile image
SlowDragonAdministrator in reply toKimkat

Roughly where in the U.K. are you?

Many private endocrinologist are doing consultations on zoom

Kimkat profile image
Kimkat in reply toSlowDragon

I live in Lancashire near Blackpool

Kimkat profile image
Kimkat in reply toSlowDragon

Also I assumed that my blood test was a full one so expected a more comprehensive result including iron, look like I’ll have to arrange my own.

Kimkat profile image
Kimkat in reply toSlowDragon

Had a bit of good news this morning. I had a telephone appointment with a GP from my surgery, (not my usual one) about an eye problem and while I was on the phone I managed to have a chat with him about my recent bloods from November and asked if he would kindly consider increasing my Levo from 50 to 75mcg and he agreed 🎉 I actually couldn’t believe that he listened to my problems and took them onboard 🙂, so I will shortly be collecting my extra meds, so we will see how it goes in the next few weeks. He also asked me to make an appointment for bloods around 6-8 weeks and he will check my vits etc at the same time, so fingers crossed and I may just start making my future appointments with him.

SlowDragon profile image
SlowDragonAdministrator in reply toKimkat

Great result!

Which brand of levothyroxine are you currently taking?

Make sure to stick to same brand as dose increases

Many people find Levothyroxine brands are not interchangeable.

See you like Mercury Pharma, they do 25mcg tablets

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

SlowDragon profile image
SlowDragonAdministrator

Meanwhile look at improving low ferritin yourself by increasing iron rich foods in diet

Low iron and/or low ferritin frequently linked to hair loss

Heavy periods are classic sign of being hypothyroid and will lead to low iron and ferritin ask for full iron panel testing for Anaemia

Never supplement iron without doing full iron panel test for anaemia first

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.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Post discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Also get vitamin D tested

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Kimkat profile image
Kimkat in reply toSlowDragon

I’m waiting for my endo to come back with the VitD result and cholesterol, also asked for T3 but I’m not holding my breath. I had a full hysterectomy over 20 years ago so no more heavy periods but I did used have them. And I try to eat iron rich foods regularly.

SlowDragon profile image
SlowDragonAdministrator in reply toKimkat

So low ferritin likely will improve as levothyroxine dose is increased upwards

guidelines on dose levothyroxine by weight

Even if we 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 on, or near full replacement dose, especially as you have had RAI

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

bestpractice.bmj.com/topics...

Kimkat profile image
Kimkat in reply toSlowDragon

Thanks for that SD I have started my iron spray and rather than have four sprays per day I have started with two so I’ll probably keep it at that until my next bloods. I have moved from 25 to 50mcg in ten months so as you can appreciate my endo is dragging his butt somewhat. At least my GP realised that my tsh has risen since the previous results which is a bonus, so I’m hopeful for the future with him 🤞🏼

SlowDragon profile image
SlowDragonAdministrator in reply toKimkat

A few people have found trying iron spray doesn’t increase iron levels much

humanbean and SeasideSusie may pop along with info on best ways to improve iron levels

SeasideSusie profile image
SeasideSusieRemembering in reply toKimkat

Kimkat

I found that the iron spray didn't improve my ferritin but did affect the rest of the iron panel. It was an experiment, I didn't do it for long but used 4 sprays per day and didn't finish the whole of the bottle. This is what happened:

Ferritin went from 57.1 to57.4

Serum iron went from 47.91% through range to 64.49%

Saturation went from 30.33% through range to 35.38%

As your ferritin has barely scraped into range, and low ferritin can suggest iron deficiency or iron deficiency anaemia, I can only repeat what I said in my original reply:

If not already done I would ask for an iron panel to see if you have iron deficiency and a full blood count to see if you have anaemia. We shouldn't supplement with iron tablets unless these are done.

If iron tablets are found to be necessary then your GP should be monitoring your levels regularly.

Iron tests should be done after a 12 hour fast (water is OK) so early morning before breakfast would be the most convenient time.

Kimkat profile image
Kimkat in reply toSlowDragon

Been waiting for my result from medichecks and I’ve just found them in my junk, so this was taken on 2nd February, since then I have convinced my GP to give me an increase of Levo so I started on an extra 25mcg a couple of weeks ago, so I’ll be having bloods done in another 4-6 weeks.

SlowDragon profile image
SlowDragonAdministrator in reply toKimkat

Bloods should be retested 6-8 weeks after each dose increase

So you are now currently taking 75mcg levothyroxine?

Which brand of levothyroxine are you currently taking

Do you always get same brand

Likely to need further increase in levothyroxine after next test

Unless very petite dose of levothyroxine is pretty much always at least 100mcg per day

Folate was too low

Are you now taking daily vitamin B complex (with folate in, not folic acid)

Remember to stop taking vitamin B complex a week before ALL blood tests, as biotin can falsely affect test results

You might wish to take separate folate in week before test to help maintain folate levels

Ferritin obviously far too low as well

Hopefully improving with increasing iron rich diet

Kimkat profile image
Kimkat in reply toSlowDragon

Yes I’m taking 75mcg now, always take the same brand, no B vitamins yet. Which ones would you advise are the best? And is ferritin iron?

SlowDragon profile image
SlowDragonAdministrator in reply toKimkat

Are you currently taking any B12 supplements or have B12 injections?

Kimkat profile image
Kimkat in reply toSlowDragon

No none at all, my GP has never mentioned my levels.

SlowDragon profile image
SlowDragonAdministrator in reply toKimkat

Not taking any multivitamins?

Improving low folate

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

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

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

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

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

endocrinenews.endocrine.org...

Kimkat profile image
Kimkat in reply toSlowDragon

I don’t take a multivitamin but I do take vit D spray, vit C and iron. If I’m honest I don’t understand hashimotos, can you have hashi if you don’t have a thyroid? It confuses me a little. Thank you for the links.

SlowDragon profile image
SlowDragonAdministrator in reply toKimkat

Sorry no ...you don’t have Hashimoto’s

But low vitamins are common on levothyroxine especially when under medicated

Being hypothyroid leads to low stomach acid and this causes poor nutrient absorption and low vitamins as result

Maintaining optimal vitamin levels by supplementing helps improve how levothyroxine works

Kimkat profile image
Kimkat in reply toSlowDragon

Just thought I would mention that I have been taking omeprazole for years due to having a really sore throat, my only symptom, I was diagnosed as having acid reflux which in turn was burning my throat. However I have read that taking it over a long period of time isn’t good so I stopped taking it 3 weeks ago to see if my throat is affected and at the moment it’s fine. I still take gaviscon advance prior to going to bed. Do these preparations affect Levo and vitamin absorption?

SlowDragon profile image
SlowDragonAdministrator in reply toKimkat

Yes terribly

Most hypothyroid patients have LOW stomach acid

Omeprazole is a PPI used to treat high stomach acid

High and low stomach acid have virtually identical symptoms but extremely different treatment

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

healthygut.com/articles/3-t...

naturalendocrinesolutions.c...

Protect your teeth if using ACV with mother

healthunlocked.com/thyroidu...

Ppi tend to lower vitamin levels even further

gov.uk/drug-safety-update/p...

webmd.com/heartburn-gerd/ne...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes

gut.bmj.com/content/early/2...

SlowDragon profile image
SlowDragonAdministrator in reply toKimkat

Yes ferritin is the storage form of iron

You can have low ferritin and high iron....so can’t assume iron is low just because ferritin is low

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.

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first

Post discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

How low iron can tend to lower TSH healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

Kimkat profile image
Kimkat in reply toSlowDragon

Oh wow I have some reading to do. I feel as if I’m doing a Phd in medicine 😂 so grateful for this information.

SlowDragon profile image
SlowDragonAdministrator in reply toKimkat

You will soon know far more than your GP (or endocrinologist)

Unless very petite......Likely to need further increase in levothyroxine after next test.....or certainly in few months

guidelines on dose levothyroxine by weight

Even if we 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 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

bestpractice.bmj.com/topics...

Kimkat profile image
Kimkat

Oh gawd, I’ve just ordered and received two iron sprays after someone on here recommended them. I’ll take onboard what you have said and I just may arrange for a full blood test for my own peace of mind. Thank you

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