Treatment for large MCV cells and neutropenia c... - Thyroid UK

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Treatment for large MCV cells and neutropenia caused by thyroid issues

Happysmile
Happysmile

Hi, I've had Graves disease, total thyroidectomy and taking levothyroxin for many years. Now have Vitamin B12 issues/deficiency for which I'm having injections. However, and despite improvement of many areas with injections, I am left with very large Mean Cell Volume blood cells (which aren't reducing despite injections) and low white blood cells(and continued exhaustion). I believe there is a link between both these issues and hypo/hyper thyroidism, but am now trying to find out how I can treat these two issues. I'm thinking maybe taking T3 is what is needed? although obviously I need to see an endocrinologist to prescribe it as I'm in the UK. Has anyone had similar experience of successfully treating large MCV and neutropenia? Thank you.

19 Replies
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Nicopa,

It sounds as though you may be undermedicated. If you post your recent thyroid results and ranges I will tell you whether you are optimally dosed on Levothyroxine.

A far as I'm aware there is no causal link between Graves, hypothyroidism and large MCV and low WBC.

Large MCV (macrocytosis) is linked to B12 and folate deficiency.

google.co.uk/search?q=large...

Low WBC/neutropenia is usually due to viral infection or other diseases google.co.uk/search?client=...

Happysmile
Happysmile in reply to Clutter

Hi Clutter, I thought large MCV was just B12 deficiency which Is one reason I have been taking B12 jabs, but as they’ve not reduced I’ve been researching further and it seems it can be related to thyroid and liver too. My last thyroid tests were serum T3 4.3(range 3.9-6.8), serum free T4 21.1(range 11.0-24.0) and serum TSH 0.97 (range 0.35-4.5). I also read that WBC’s need B12 but my neutrophil is always low. Thank you for taking time to respond.

Clutter
Clutter in reply to Happysmile

Nicopa,

healthunlocked.com/pasoc can tell you more about macrocytosis than I can.

You appear to be adequately dosed on Levothyroxine with TSH low-normal and FT4 in the upper range. Conversion isn't good though as FT3 is low and you may find a little T3 added to your Levothyroxine dose beneficial.

Happysmile
Happysmile in reply to Clutter

Thank you Clutter. Out of interest, do you know if thyroid problems can increase cholesterol?Mine has been increasing randomly then decreasing etc.

Clutter
Clutter in reply to Happysmile

Nicopa,

Cholesterol is often high with low thyroid or undermedication but your thyroid levels aren't likely to cause high cholesterol.

Happysmile
Happysmile in reply to Clutter

Clutter. I have been advised to stop levothyroxin and take natural T4/T3. Any thoughts?

Clutter
Clutter in reply to Happysmile

Nicopa,

You could add a little T3 to your Levothyroxine or switch to NDT to raise FT3.

You may need to source your own and self medicate. NDT is isn't licensed for UK use and T3 is supposed to be recommended by an NHS endocrinologist before GPs prescribe. Extortionate cost of UK T3 makes it difficult and unlikely that new patients will be prescribed T3.

Happysmile
Happysmile in reply to Clutter

That’s a good thought. I’ve only been guided to a T4/T3 mix and that’s not prescribed. Still trying to find a suitable endocrinologist to prescribe. It’s not easy to find one.

Clutter
Clutter in reply to Happysmile

Nicopa,

Email dionne.fulcher@thyroiduk.org for a list of member recommended endos.

Do check with their offices that they support prescribing NDT or Liothyronine (T3) prior to confirming an appointment.

Happysmile
Happysmile in reply to Clutter

Thank you

SlowDragon
SlowDragonAdministrator

Low stomach acid is closely linked to low B12

Low stomach acid is very common with inadequately treated hypothyroidism often due to poor conversion and low FT3

Classic reaction to T3 being stopped (which we have seen masses of recently due to costs) is that vitamin levels drop, often significantly

Eg

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

That’s interesting, I’ve never been prescribed T3 but am wondering if it may be the answer. Seems so wrong to restrict access to it if it’s truly needed.

HiddenThis reply has been deleted
Happysmile
Happysmile in reply to Hidden

I agree. Have you ever stopped synthetic T4 and replaced with natural T3 and T4? I was advised to do this today but am concerned about stopping the synthetic.

It could also be caused by low folate. Some people cannot absorb artificial folic acid so you could try supplementing with methyfolate. However try a tiny amount first as it can make you feel a bit weird if you are low (our experience anyway). You can test with a red cell folate test I think, though if you’re already taking it, results may not be accurate.

Happysmile
Happysmile in reply to blogsy2

I take folic acid and my levels are high but I think I will try methylfolate. Thank you for the tip of starting low.

Very informative thank you. Could you inbox me where you source the NDT from please? Are you UK based? I’m just so worried about stopping the Levo without being medically monitored, feels like a big leap of faith. I take a really good ester c and magnesium glycinaye, plus b complex and hudroxocobalamin by injection as methylcobalamin isn’t prescribed in the Uk. I do take sublingual Methylcobalamin however. And folic acid.

The Mayo Clinic has written this about enlarged mean cell volume (MCV) aka macrocytosis.

Macrocytosis isn't a specific disease, but it may indicate an underlying problem that requires medical evaluation. Common causes of macrocytosis include:

Vitamin B-12 deficiency

Folate deficiency

Liver disease

Alcoholism

Hypothyroidism

A side effect of certain medications, such as those used to treat cancer, seizures and autoimmune disorders

Increased red blood cell production by the bone marrow (regeneration) to correct anemia, for example, after blood loss

I have had hypothyroidism for years, but only lately learned that my T3 level is slightly below the bottom of the range (because it was never tested before!). In 2014, I was treated for cancer using carboplatin, which I today learned can cause macrocytosis as well as thyropid dysfunction. Well, at least I don't have cancer any more.

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