Recent test results: follow on from previous po... - Thyroid UK

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Recent test results: follow on from previous post (postpartum thyroiditis reduction of Levo)

Twan12 profile image
21 Replies

Hi again, I've just had my most recent results re my reduction of Levothyroxine.

They haven't tested my T3 this time for some reason, but the rest of the results are below:

TSH: 3.7 mu/L (0.35-4.7)

FT4: 11 pmol/L (7.8-21)

Vitamin B12: 304 pmol/L (115-1000)

Serum folate: 3.8 ug/L (<3 ug/L suggests deficiency)

Serum ferritin: 17 ug/L (<20 ug/L suggests iron deficiency please correct/assess)

Full blood panel also showed low white blood count:

Total white blood count: 3.3 (4-11)

Neutrophil count: 1.59 (2-7.7)

I've had a continuously low white blood count for the last few years (since having my son). I tried to see whether I had this problem before pregnancy/before I got ill but I can't access test results before then as was with a different GP in a different city. I could probably request them though.

I did find a test from Aug 2017 which was after giving birth but before my thyroid problems (thyroid tested fine in this 6 week check) and my white blood count was:

Total white blood count - 4.3 (4-11)

Neutrophil count- 1.63 (2-7.7)

So wondering if I just have a low white blood count naturally🤷‍♀️

I'm speaking to my GP today and I'm going to ask him to test Vit D, as they didn't do that either. Will also ask him about white blood count as slightly concerned about that in regard to Coronavirus. Does that mean I have more chance of picking it up? No idea when I'll have an opportunity to speak to Endocrinologist as he's really busy in current climate.

I've attached screenshots of my results as well in case there are any important bits I haven't picked out.

Any insights in the white blood count would be useful, also interested to hear thoughts on thyroid results. They're technically within normal range but higher than they have been before (usually around 2). I'm not sure whether I'm supposed to wait for thyroid to improve by itself or up medication??

Still iron deficient despite being on tablets but I suspect that's down to my monthly cycle, which is absolutely insane right now (sorry!).

Thanks in advance!

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SlowDragon profile image
SlowDragonAdministrator

So you are clearly under medicated and in need of 25mcg dose increase in levothyroxine immediately. Bloods should be retested 6-8 weeks later

Vitamin deficiencies are direct result of having dose of levothyroxine reduced inappropriately

Ferritin is extremely low. Likely to need iron supplements

Folate right at bottom of range and B12 too low

GP should test for Pernicious Anaemia before starting any B vitamin supplements

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

thyroidpharmacist.com/artic...

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

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 or jarrow B-right are other options that contain folate, but both are large capsules

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

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

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

Twan12 profile image
Twan12 in reply toSlowDragon

Sorry, I might be being silly here, but aren't my thyroid results within the reference range? They have definitely gone up but as far as I'm aware they're still in the 'normal' range. I'm 100% iron deficient but isn't the B12 okay?

SlowDragon profile image
SlowDragonAdministrator in reply toTwan12

On levothyroxine the aim is to be on high enough dose to bring TSH under 2. Most people TSH will be well under one when adequately treated

Ft4 at least 60-70% through range

Most important result Ft3 at least 50% through range

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Your Ft4 is only 24% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Being hypothyroid lowers vitamin levels, due to low stomach acid

Low vitamins results in lower TSH

If vitamins were optimal, likely TSH would be higher

Twan12 profile image
Twan12 in reply toSlowDragon

Hi again, yes. I did the blood test at 9.20am on Monday (earliest surgery could do) and didn't take my Levo until after. No food or drink etc. I'm really confused because my GP was really positive about my tsh etc being within normal range. I definitely didn't feel right on 125mcg back in November, I was getting horrible heart palpitations and my tsh was about 1/2 then.

SlowDragon profile image
SlowDragonAdministrator in reply toTwan12

Guidelines on dose by weight

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.

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.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Essential to regularly test vitamin levels as keeping vitamins optimal enables patients to tolerate levothyroxine better

Strictly gluten free diet frequently helps or is essential

SlowDragon profile image
SlowDragonAdministrator

This is almost certainly Hashimoto’s, not post partum thyroiditis

healthunlocked.com/thyroidu...

Reducing levothyroxine from 125mcg to 25mcg was bound to leave you extremely hypothyroid

Twan12 profile image
Twan12 in reply toSlowDragon

Why do you think it's Hashimotos and not postpartum?

I never had a problem before having my son. 3 months after giving birth I developed lots of hyperthyroid symptoms like hot flashes, insomnia and a racing heart, I also lost a lot of weight without trying. About 3 months after that I went very hypothyroid with tsh levels of 182 (6 months earlier they were about 2). So it came on very suddenly which, from what I know, that is consistent with postpartum thyroiditis which is very quick and dramatic. On top of that my antibodies went from over a thousand to 57 (I've read it presents as Hashimotos initially and then antibodies return to normal and most thyroid function returns to normal although some may have permanent damage).

From what I have read and experienced I feel fairly confident it's postpartum thyroiditis which is why I am interested to know why you think it is Hashimotos? You may know something I don't.

Thanks for your reply :)

Twan12 profile image
Twan12 in reply toTwan12

I do agree though, that I think I have permanent damage and will probably need thyroxine for life, although a lower dose compared to what I was on. I was just really interested to know if you need to give your thyroid time to spring back into action when reducing after postpartum cases, or whether my results now are what they will always be

tattybogle profile image
tattybogle in reply toTwan12

From what i can find to read on the subject - which is thin on detail !- i get the impression that post partum thyroiditis PPT is expected to resolve within a year of birth, that if symptoms remain after this time it's not considered to be PPT, that if thyroid antibodies are present it's more likely to become permanent, that on removing Levo (if used) the bloods will be normal and no symptoms will be noticed, thus showing that thyroid is now ok on it's own. I read that it is the return of Hypo symptoms and blood results that indicates there is still a problem, and therefore likely permanent.

How long ago was birth ?

Mine started like yours, after birth, hyper within a few months, then very slowly hypo.

didn't figure out what it was till about 4 yrs later when got Levo. and antibodies were in the thousands.

don't know what to call mine. but it's certainly knackered.

Twan12 profile image
Twan12 in reply totattybogle

I've read that about it resolving itself after a year too. My son turned three last week so not looking good. I think my Endocrinologist was thinking that because I was having symptoms of being overactive, that maybe if I came off gradually I wouldn't notice anything. But I am definitely getting symptoms of it being underactive now. It's really difficult to know what to do and to be honest, I'm sick to death of it all. Just want to go back to normal

SlowDragon profile image
SlowDragonAdministrator in reply totattybogle

Mine was same ....started (Or became more obvious) when I quit smoking before having children.

Went through mildly hyper phase after first pregnancy (Lost loads of weight and felt great) but became very hypo after 2nd child. Not diagnosed for further 4 years

SlowDragon profile image
SlowDragonAdministrator in reply toTwan12

Hashimoto’s almost always starts after hormonal changes...puberty, pregnancy, menopause

Hashimoto’s also almost always starts with transient hyperthyroid results and symptoms as thyroid comes under attack and lots of thyroid hormones are released as thyroid cells break down

TSH was extremely high

Have you had ultrasound scan of thyroid?

If not ask for one to be done

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

tukadmin@thyroiduk.org

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

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.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Twan12 profile image
Twan12 in reply toSlowDragon

I didn't have an ultrasound of thyroid, no. But I know that tsh went from around 2 to 182 in 5 or 6 months (Aug-Jan). I was told that because my antibodies have gone from over a thousand to 57 that I don't have Hashimotos anymore... This is the most confusing condition because everyone tells you different things.

I will ask for an ultrasound but I doubt it will be any time soon with the current situation 😬

SlowDragon profile image
SlowDragonAdministrator in reply toTwan12

I have info on private scan options in London

Suggest you increase dose levothyroxine to 50mcg and retest in 6-8 weeks

tattybogle profile image
tattybogle in reply toTwan12

" I was told that because my antibodies have gone from over a thousand to 57 that I don't have Hashimotos anymore..."

Don't know about that........ but you don't seem to have many thyroid hormones anymore either, endogenous, exogenous, or anyotherogenous.

x

Twan12 profile image
Twan12 in reply totattybogle

Yes, I see what you mean. The way it was explained to me is that my body isn't attacking my thyroid anymore, so it shouldn't get worse. But permanent damage may have been done and if that is the case then I will have to be on some amount of thyroxine permanently 🤷‍♀️my gut is telling me I need to be on 75mcg, that's where I felt best but I really need to talk to my doctor before I make any decisions and stop something I've been working towards for 9 months xx

tattybogle profile image
tattybogle in reply toTwan12

I don't think my Thyroid has read that book about what it's supposed to do,

In fact i've given up looking for scientific answers,

I now believe it's being run by malevolent blue pixies who are laughing at me :)

Everything makes much more sense now i've accepted that.

Twan12 profile image
Twan12 in reply totattybogle

Haha blue pixies! Yes, I think I need to come to terms with things but really need accurate info to do that. Even my two Endocrinologists are of different opinions so I don't know whether I'm coming or going!

tattybogle profile image
tattybogle in reply toTwan12

Two endocrinologist's? that's just greedy ;)

What are their names?

Mr Arse and Mr Elbow ?

Sorry , couldn't resist that one.

The Child that broke my thyroid has just driven me home from her work ,in her own car, while i pretend to be the responsible adult for the 'L' plates.

We managed the last 20 yrs just fine and had plenty of fun dancing in field's and swimming in rivers along the way, even with a misbehaving thyroid.

Don't worry , you'll get it figured out , and you'll soon feel a lot better than you do now.

Twan12 profile image
Twan12 in reply totattybogle

Thank you. That's really nice to hear your positive experience.

Haha yes, I asked for a second opinion so have ended up with 2 Endos with very different opinions! Both equally impossible to get in touch with🤣 think they're just sick of me now😂

Ttapril profile image
Ttapril

Yes, some people with PPT can come off levo. Your TSH looks good and to me shows that you will probably be able to either completely wean off or be on a lower dose. I came off of levo after ppt 10 years ago. As long as while you are weaning your TSH compensates but stars below ten you are most likely someone who has had recovery postpartum. That was my experience with ppt my first go around. And, for the 10 years I was off levo after ppt I felt great. (In my 30s) I also tested positive for both graves and Hashimoto the entire time I was unmedicated. I’m currently having another bout of ppt after the birth of my twins. About to start weaning 16 months postpartum. Wish me luck! I hope you are finding yourself well these months later!

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