Low WBC and leukemia risk after thyroid cancer and RAI

[Bustamove86]

Has anyone else had seriously low White blood cell counts, particularly after having thyroid removed and being treated with radioactive iodine? I had total thyroidectomy due to cancer in 2009, and was treated with RAI. This year my wbc have been around 1.9 and my hemotologist informed me that radioactive iodine treatment increases our risk for leukemia so I’ve been checked twice now (bone Marrow biopsy and flow Cymotry test or something ) and so far they’re negative. But from what I’ve read, people who get leukemia after thyroid cancer tend to have very low life expectancy 😳. Very scared and wish I had known about this prior to RAI treatment.

[Mary-intussuception]

So sorry to hear this.

I don't know about this but wondered if it might be worthwhile phoning one of the Cancer helplines?

[shaws]

Welcome to our forum Bustamove86

I am really sorry you've had thyroid cancer and seem to have been left to get on with things - thyroidwise. I think that's very bad of the endocrinologist who should have been looking after your health.

No wonder your scared - who wouldn't be. You've just been left to worry with not one word of support from those who are supposed to know better.

We never know till afterwards I think. It should be compulsory for us to be told the outcome of having our thyroid gland removed.

You do not say if you were prescribed replacement thyroid hormones. The usual being levothyroxine also known as T4.

I have my thyroid gland and I think it is everyone's right - whose had their thyroid gland removed completely, to be prescribed T4/T3 combination.

As stated - I have my thyroid gland and could not - in any way - restore my health one iota. It was only when I joined Thyroidu,.org.uk ( before there was this forum) who set me on a path to good health.

At present I would contact a cancer helpline and in the meantime, you will have to get your thyroid hormones optimum.

First, make an appointment for a new blood test. It has to be at the very earliest, fasting (you can drink water) and if you take levothyroxine allow gap of 24 hours between last dose and test and take afterwards. Levo is usually taken with one full glass of water (when we get up) and wait an hour before eating. Food interferes with the uptake of the hormones. Some prefer a bedtime dose, in that case you'd make sure you had an empty stomach and if you've had a meal previously allow a gap of 2.5 to 3 hours before taking bedtime dose.

Ask GP for a Full Thyroid Function Test - he may refuse. If so, you can get a private one and we have several labs that do home finger pin-prick blood draw.

You need, TSH, T4, T3, Free T4, Free T3. Get a print-out from the surgery (we are entitled by law) and make sure the ranges are stated. Ranges are important as labs differ and it makes it easier to comment upon them.

GP should also test B12, Vit D, iron, ferritin and folate. Everything has to be optimal.

Ignore ignorant doctors/endocrinologists who ignore the plight of ill patients.

I believe quite a number have had your op on your thyroid gland and they seem to be doing o.k. now and am sure you will do so and you will also feel much better when your TSH is 1 or lower and a Free T4 and Free T3 in the upper part of the ranges. Those members who've had your op will also respond when they read your post.

We have to read, learn and ask questions.

Regards.

[Bustamove86 in reply to shaws]

I have been on synthroid since the surgery in 2009, and in 2013 added cytomel. Currently on 175 of the first and 5mcg twice daily of the latter. I am very careful about taking on empty stomach and waiting an hour before I eat anything. This ain’t my first rodeo haha

[RockyPath]

So sorry to hear what you’re going through. You’ve certainly been tested very thoroughly, and showed to be healthy in regards to leukemia, so you can count that as a victory. None of us knows what’s in store as we pass 60 and genetic mutations start accumulating from lifetime exposure to so many things we cannot see.

You have knowledgeable support on your thyroid journey and meeting your body’s need for the hormone it needs to be healed is surely the most valuable thing. Everything hinges on thyroid hormone getting to your cells.

All best

[Bustamove86 in reply to RockyPath]

Thank you. Very upset at the moment, because the on call doctor just called me in response to my message to my endocrinologist and suggested it’s just anxiety 😣

[vocalEK in reply to Bustamove86]

*pat* *pat* *pat* "And don't worry your pretty little head about it." SCREEEEAM! Where do these arrogant goons get off telling you it's just anxiety. What practical suggestions were made regarding what you can do?

[Bustamove86 in reply to RockyPath]

I’m only 32

[RockyPath]

Oh dear!

I’m beginning to think that the increased level of chemicals, stray pharmaceuticals, and spurious hormones polluting our food, water, furniture, homes, clothing, vehicles, (fill in anything else you come into contact with), is causing bodily systems to become deranged and to malfunction. Everything was definitely cleaner when I was a child. The food and drink wasn’t laced with chemicals and stray hormones.

I am so sorry you’re having such an awful time.

Doctors prefer to dismiss or overlook thyroid-related symptoms and blame the patient, and they are breaking the Hippocratic oath when they do so.

[Bustamove86]

Here’s a little more background-I go to Memorial Sloan Kettering hospital in New York, and they show the normal range with all my lab results. For example, my white blood cell count was 1.9 k/mcL and the normal range is 4.0-11.0 k/mcL, so I’m really low and actually neutropeniC. Also in April my TSH was .18mIU/L, (and the normal range is .60-4.80); my free t4 was .73ng/dL (normal range is .70-1.50) and my free t3 was 70 ng/dL (normal range is 90-168). In March my TSH was .31, free t4 was.67, and free t3 was 51. But in February my TSH was 7.4, so it’s bee fluctuating pretty badly. They increased my synthroid after the March results and then again after the April results and am currently taking 175. Also had a pituitary MRI and was checked for Cushings but it was negative

[clynnesloan]

Hi! I had a thyroidectomy in 2011 and was on T4 replacement only. Never felt great but attributed it to lifestyle and just thought that I would probably not feel great again without thyroid. Well in the last year or two I have felt terrible with hypothyroid symptoms so I asked for my fT3 to be tested because since surgery nobody had checked it. It was very low and my WBC were also very low.

I am type one diabetic and follow Dr. Bernstein’s protocol for regulating blood sugars. He does question answer teleseminars every month and someone asked a question about low WBCs and he advised the patient to get his fT3 checked because a low fT3 can produce low WBC counts. I have no source for you other than that is the first thing he told the patient to investigate.

[Bustamove86 in reply to clynnesloan]

Thank you!!! My t3 is low and I’m already on cytomel 10mcg but maybe I need more!