Neutropenia/ low neutrophils: I was diagnosed... - Thyroid UK

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Neutropenia/ low neutrophils

diamondgirl902 profile image
19 Replies

I was diagnosed with Neutropenia in 2017 aged 46. Anyone else with neutropenia and thyroid problems?

I'm sure I'm hypothyroid. My blood test kit has turned up today, so I will wait until Monday before doing the test and posting it off.

My last thyroid tests are below and Greygoose has advised me to carry out new blood tests.

2019

TSH 2.95

FT4 16.8 pmol/L (12 - 23 )

FT3 4.89 pmol/L (3.1 - 6.8 )

2022

TSH 3.31

FT4 14.3 pmol/L (12 - 23 )

FT3 3.55 pmol/L ( 3.1 - 6.8 )

All antibodies have been fine.

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diamondgirl902
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19 Replies
SlowDragon profile image
SlowDragonAdministrator

welcome to the forum

hopefully you are also testing vitamin levels and BOTH TPO and TG antibodies

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

Also both TPO and TG thyroid antibodies tested at least once to check for autoimmune disease

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

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and 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

Post all about what time of day to test

healthunlocked.com/thyroidu...

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...

Only do private testing early Monday or Tuesday morning.

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...

Tips on how to do DIY finger prick test

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

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

diamondgirl902 profile image
diamondgirl902 in reply toSlowDragon

Thank you Slowdragon

I was diagnosed with B12 deficiency/PA but despite every other day b12 jabs along side co-factors I was feeling no better.

I know that thyroid problems are also common with B12 deficiencies.

I will test early in the morning and let you know the results when I have them

McPammy profile image
McPammy

I’ve had abnormally low neutrophils and abnormally low white cells too. Looking back at my blood records on Patients Access, what correlates with the times they have been low levels are high levels of thyroxine. That can be t4 or t3 or both levels. I have heard and read people with Graves’ disease over active too high thyroxine can live with abnormally low neutrophils and low white cells. Low counts can cause you to pick up infections easier and take more time to recover. I try to keep my T3 and T4 levels in range to help my white and neutrophil counts, it doesn’t always work though. When I query it with my gp he just says nothing to worry about but I don’t buy that and think surely this should be looked into deeper. When I have my next appointment with my Endo I’ll bring this up but I also don’t want any excuses to lower or take away my much needed T3 prescriptions. It’s all a balancing act.

diamondgirl902 profile image
diamondgirl902 in reply toMcPammy

Thank you for your reply. I hope you get some answers, please let me know if you do. Best wishes to you xx

Coulby profile image
Coulby

Yes ! I was diagnosedwith Hyperthyroid in 2013 and I wasn't told about this until last year...At the time my neutrophils were at 0.1 ???And I continue to see my neutrophils going up and down..they are still low and I am still exhausted.

I'm seeing aThyroid specialist on the 18th of July so will hopefully understand a bit more 🤞

diamondgirl902 profile image
diamondgirl902 in reply toCoulby

Hi Coulby, thanks for your reply.

I hope you get some answers, please let me know if you do.

In 2017 I managed to lose 21 lbs and then started with a gnawing pain under the left rib cage and indigestion so I went to the pharmacy. I was told to go straight to my GP, where i was referred for cancer tests, luckily all ok.

My gp mentioned I had neutropenia. When I received all medical records going back to 2005, neutropenia started 6 months before my stomach pains that led me to be check for cancer.

Best wishes xx

Coulby profile image
Coulby in reply todiamondgirl902

Omg..Isn't it all so frustrating...IL let you know how I get on 😊

diamondgirl902 profile image
diamondgirl902 in reply toCoulby

It certainly is. I hope you get some answers xx

Kiwidel profile image
Kiwidel

Hi, yes, I have chronic neutropenia and hypothyroidism. Was diagnosed in 2014 at the grand old age of 42. I’ve also tested ANA positive and it would appear I have Hashimotos.

My white blood cell count hovers around 1.9 although it did drop lower when I had blood taken just after a cold which triggered a panicked call from the lab at 10pm telling me to get to a hospital if I had a fever (I didn’t). Since being diagnosed I’ve had a bone marrow biopsy and a multitude of referrals to haematologists and rheumatologists in the UK and Canada (where I now live) and no one can explain it. The most recent rheumatologist I saw said he’s been in the job for ~30 years and has a number of patients that have results outside of normal like me but have no symptoms of anything being wrong. As I have not got any blood test results from before I was diagnosed / when I was younger I can’t tell for sure, but suspect that this is just the way I am.

I now have an annual catch up with a haematologist and have been told to go to A&E if I have a fever and tell them I have chronic neutropenia so they will put me straight onto antibiotics. I rarely hit normal temps so it there is a part of me that isn’t sure whether I would ever get to what is normally considered a fever.

I have managed to find someone to prescribe desiccated thyroid over here which has been a game changer; and apart from the usual middle age spread am generally fit and healthy.

Based on my experience I wouldn’t read too much into the neutropenia issue - focus on getting your thyroid levels right then start looking at other levels (vit B / D etc) and hormones (oestrogen / progesterone/ DHEA / testosterone) if you still feel off as you probably also be dealing with peri menopause/ menopause issues too.

There is a wealth of knowledge on this forum so you are in the right place for further advice.

Good luck!

klr31 profile image
klr31

I have Hashimoto's and low neutrophils. I think they can be linked with autoimmune diseases. I've tested positive to ANA and Smooth Muscle antibodies in the past. Karen

diamondgirl902 profile image
diamondgirl902 in reply toklr31

Thanks for your reply Karen.

My neutropenia started in 2017. My haematologist thinks I have autoimmune neutropenia.

I have my first rheumatologist appointment in August.

How long have you had neutropenia and Hashimoto's?

Tracy

klr31 profile image
klr31 in reply todiamondgirl902

I've had Hashimoto's for over 20 years but I only recently discovered I have low neutrophils when I took a private Well Woman blood test with Medichecks. I've had low levels twice over 2 years so I think it's pretty normal for me. I haven't told my GP but may remedy this when I go at the end of July, just so it's on my records. I remember my mother-in-law had low neutrophils and autoimmune disease (although not thyroid issues) for many years. I don't see any consultant. Karen

diamondgirl902 profile image
diamondgirl902 in reply toklr31

So you've had Hashimoto's for quite some time. They say people often have more than one autoimmune disease.

klr31 profile image
klr31 in reply todiamondgirl902

I don't know how I'd find out if I have Autoimmune Neutropenia.

Karen

klr31 profile image
klr31 in reply todiamondgirl902

What is autoimmune Neutropenia?

diamondgirl902 profile image
diamondgirl902 in reply toklr31

Autoimmune neutropenia (AIN) is a blood disorder where your immune system attacks white blood cells (neutrophils) that fight infection. AIN may be primary or secondary.

klr31 profile image
klr31 in reply todiamondgirl902

Do you get any symptoms with it?

diamondgirl902 profile image
diamondgirl902 in reply toklr31

I have so many symptoms, but don't which are related to it. I have B12 deficiency and possibly thyroid, I feel like I'm banging my head against a wall to get answers from the GP.

klr31 profile image
klr31 in reply todiamondgirl902

Doctors don't seem to know much about autoimmune diseases, especially thyroid. B12, D, ferritin and folate are all often low in thyroid sufferers. Liver function tests can be abnormal too. I'm sure it is all connected. I hope you find some answers.

I was told about abnormal blood tests over the years I.e ANA, LFT, etc but no-one has been able to tell me why or what I can do about it.

Karen

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