I removed my thyroid because I kept having neutropenia (to the point where my neutrophils were literally 0), which the doctors said was caused by carbimazole.
I asked them countless times why they weren’t testing my bone marrow to rule out any other causes of the neutropenia, but they said it was definitely the carbimazole. I resisted removing my thyroid for years but finally relented and had it done on 4 April.
On 10 April my neutrophils were 4.2 (range 2 - 7.1)
Today my neutrophils are 2.1 (2 - 7.1)
This is obviously very close to going below the reference range, and I have a terrible feeling that’s exactly what’s going to happen. Am I right in thinking this means my neutropenia wasn’t caused by the carbimazole after all? I’m absolutely fuming, if that’s the case it means I literally removed an organ for no reason. Someone is gonna get sued into the Stone Age!
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Hyperbee
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Hi I don't know if this is useful but I have hypothyroidism (secondary unknown whether hashimotos) and for 2 years before diagnosis it was discovered by accident that I had unexplained fluctuating neutropenia. I was continually monitored by haematology but always thankfully avoided the bone marrow aspiration. Just before I got diagnosed hpyo it was falling continuously reaching 1 (normal range 2 up.) When I started thyroid replacement it rose to 2.1 (highest in a while) and this was taken when not yet optimal though with good levels so its been assumed it was caused by my hypothyroidism (I will be monitored in 4 months to see what its up to.) The last haemotolgist I saw said shes found over the years that neutropenia can be closely related to the thryoid - we hear a lot about how neutropenia is caused by hyperthyroidism but it also can evidently be caused by hypothyroidism. I don't know if you're on thyroid replacement now but just thought if you've had your thyroid removed it could be possible neutropenia is now being caused by too little thyroid hormone. Hope this is useful!
That’s very interesting and I had no idea about that, thank you for sharing. Hopefully your neutrophils will be normal in 4 months time.
My thyroid hormones were also tested at the same time (2 weeks ago and today) and are normal. My T4 was 10.3 and 10.2 ( 9 - 23) so is a little low, gonna increase it. My T3 was 3.2 and 3.7 (2.5 - 5.7). TSH remains suppressed.
I’m absolutely shocked to see my neutrophils so close to going under the reference range again. I absolutely didn’t expect that, I was assured removing my thyroid would solve all my problems and I’d never have to worry about neutropenia again!
Thank you I understand completely! I've recently become very undermedicated so I'm sure my neutorphils are lower again - not what you want in the current situation! Really hope the thyroid hormone helps you and you can get yours up too!
Don't be fooled by the word normal. Normal for your ft4 result could be 9 and it could also be normal at 23. What you need are results that are optimal for you. You will only find your optimal by trial and error. It will be somewhere between 9 and 23 hopefully.
Thanks yeah I’m gonna shoot for the optimal range. My biggest worry now is the neutrophils being so close to going under the range. Really didn’t expect to have to deal with neutropenia ever again
Thanks, interesting to know hypo can cause neutropenia. But in that case it was due to her T4 being low? My T4 and T3 are normal (TSH remains suppressed), I started taking replacement hormones early so they never dropped below the reference range. This leads me to believe I must have an issue with my bone marrow or something
You need to be on a perfect healthy diet for normal blood results , no sugar no unrefined carbohydrates, ALL natural whole foods , bone marrow makes 10million white and 20million red blood cells every10 seconds and 30million platlets and they need the right nutrients to do so. Sorry to hear you had to have your thyroid removed.
Already eat low sugar, haven’t heard of the unrefined carbs thing. Makes me wonder why my very unhealthy family members have normal neutrophils if that’s the case? I really don’t think my diet would cause 0 neutrophils? I’m fully convinced there’s another medical reason
Vit K2 along with the D3 supplements , I hope. See Kate Rheaume Bleue's book
'The Calcium Paradox - a little known vitamin that may just save your life' Please be certain you need calcium before taking. Most people don't need calcium but you may be one who does? Just make sure you do your research. D3 encourages absorption of calcium which is why you need to have sufficient amounts of K2 to deal with the calcium absorbed if taking Vit D or making vit D for that matter (Please note K2 is NOT K1) K2 triggers the enzyme that escorts calcium to where it should be - bones and teeth otherwise it is likely to take the easier route to soft tissue /muscle. Calcium hardens. No one want's a hardened heart muscle or hardening of the arteries to the heart and brain. Magnesium yes ! Magnesium relaxes (the opposite to calcium which tightens) Most people have too much calcium today and are deficient in magnesium. I know hospitals prescribe calcium with vit d. Adcal - I think they call it for bone health, following bone density scans. I threw my prescription straight in the bin when sent from hosp via GP as I had already learned about. Magnesium is the crucial factor. There is a new podcast online since CV lockdown. Called the Food Bank Show. Hosted by Steve Bennet he interviews an eminent doctor, scientist or nutritionist everyday at 10am. But the recordings are accessible. Listen if you are interested to all of the Patrick Holfords interviews (been on 3 times I think)and British GP Dr Malcom Kendrick and Cardiologist Dr Maholtra and another GP and his wife - Liverpool area - name escapes me. Most interviews have a connection to Covid 19. And if the info that Patrick Holford gives out in his interview interests you then look up his website Flu Fighters . net He interviews on his site Dr Doris Loh incredible info about how vit c works in the body . And another interview :Dr Cheng , front line at Woohan and Shanghai who speaks of vit C protocol used on Covid patients successfully and report of the studies and also trials taking place in China. I hope this info really helps and it really does matter what we eat and refuse to eat and what we supplement
Yes it probably is some thing else but my point is we have to do every thing in our power to support our own health alongside treatments and sugar is an inflammatory and refined carbohydrates are turned into sugars in our body so we need to help our body as much as possible when our bodies are not functioning properly ,we need to eat exceptionally healthy so as to not cause inflamation in bone marrow where our blood cells are formed. Scientists are now contributing a lot of health conditions to inflamation in our bodies including thyroid conditions. You may want to look up Berberine and quercertin.
Thank you seems I have a lot more research to do! I’m always amazed by how knowledgeable people are on this site, compared to actual doctors who don’t seem to have much of a clue...
Hi, neutrophils are as you know a specialised form of white blood cell, your immune system's first line of defence. Have you noted that 1 slice of toast is equivalent to eating (I believe , if have got this right) 12 teaspoons of sugar. That sugar eaten stops/lowers the effectiveness of white blood cells for up to 5 hours. Eat some bread or pasta/rice every 5hours which many do and you have basically knocked the effectiveness of your immune system right out. The first thing to do if coming down with a cold/infection is to stop your sugar intake including refined carbs = starch. The first time I came across this info was in a book I read many years ago , Paul Jaminet (NASA)and his wife's book (molecular Biologist) - 'The Perfect Health Diet' so much interesting and good information. What sparks interest is a quote from the book: That the Lion and the Lamb have essntially the same diet!
My neutrophils dropped to 1.5 (2-7.5) in my latest set of medichecks bloods in october. Previously it has been ok. Interestingly my ft3 was also lower than it has previously been at 3.7 (3.1-6.8). I have no idea whether it was related to my hypothyroidism or a transient dip for some unknown reason.
That’s very interesting, thank you for sharing. I didn’t know people could have random dips like that for no apparent reason. I’m going to increase my T4 and slightly increase my T3 too, and retest neutrophils in 2 weeks. Fingers crossed it will resolve itself
How much levothyroxine are you currently taking and how much T3
We usually advise only increasing one or the other at any one time
Suggest you just increase levothyroxine at this stage. It should also increase Ft3 a little anyway
Retest 6-8 weeks after any dose (or brand)change
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)
If/when also on T3, make sure to take last third or half of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Oh you’ve already answered my question in my new post lol! I was unsure whether to increase both. I’ve been taking 75mg T4 and 25mg T3.
Thanks again for sharing all your knowledge!
About taking the last dose of T3 8-12 hours prior to test, what do I do if I only take it once a day in the morning? Just take it as normal the day before, or is it better to split into two that day? Sorry if that’s a silly question lol
I’ve had autoimmune neutropenia for many many years now. It is apparently quite a rare autoimmune disease. I was diagnosed following bone marrow aspiration and lots of other antibody tests. I’ve been monitored by Haematology for a long time. They made it very clear from the start having one autoimmune disease puts you at much higher risk of developing another. I later became hypothyroid. If your neutrophils are not improving I think I would certainly be asking for a haematology referral. All the best Liz
Just read up on it and will definitely be asking for a haematology referral. I should have had my bone marrow tested before thyroid removal was even considered... but every doctor I saw assured me it was 100% caused by the carbimazole and I’d never have issues with my white blood cells again if I removed it. Someone is getting sued!
Sorry to hear you have neutropenia btw, absolutely horrendous disease. Every little infection can turn into a massive issue. Do they actually give you treatment to increase your neutrophils? When I had neutropenia they told me they wouldn’t give treatment (GCSF) unless I had an active infection. What a horrible way to go through life, having to avoid even the most harmless of germs because the NHS isn’t fit for purpose and won’t treat people until it’s too late...
Yes a friend of mine has autoimmune neutropenia. She also has 2 other autoimmune conditions and they are querying lupus now too. I've asked her to have her thyroid checked privately, but she believes the doctors when they say her results are normal.
Unfortunately, as we all know, autoimmune disorders are an absolute minefield. I have been extremely lucky to have seen some wonderful haematologists from day one. I’m not medically qualified so this is just from my experience - neutropenia, as I’m sure you know, can be an underlying condition as a result of other diseases; autoimmune disease, LGL disorders or as you were told as the result of certain drugs.
Autoimmune neutropenia can be ruled out with antibody blood tests. My condition was initially investigated due to other co-factors, high lymphocytes in conjunction with the neutropenia. In the event you did not have other blood anomalies perhaps this is the reason they did not investigate further. Purely speculative on my part.
As for living with neutropenia, I have adjusted to a slightly different way of life, like all of us at the moment but particularly those of us with other conditions . I’m more careful, with what I eat and how I live my life but I definitely still live it. As for treatment, yes GCSF is available if my neutrophils fall below a certain level but it is only a temporary fix. I have accepted this is my body and I’m good with that. I hope you get some answers and please message if I can be if assistance x
I am hypo and my neutrophil count was just below the range in the last two bloods done at the surgery, I only noticed this when I got access to my test results, my GP never mentioned it but why would he, he doesn’t see a problem that my ferritin is always slightly over the range!
I haven’t been able to find out why but in my case I think might be related to low FT3, my FT4 is top of the range. It would be interesting to see your results in two weeks.
Thanks for sharing, it’s very interesting to hear slight neutropenia is so common in hypo patients. I had no idea that was the case.
I also read an article today about Graves’ disease which noted that Graves’ itself can cause mild neutropenia, but 100% of patients in the study saw this normalise after a few weeks of treatment with ATD, when their hormones came into normal range.
I’m hoping I won’t have severe neutropenia again and that (if anything) it will only go slightly below range, and resolve itself as my hormones continue to normalise. If not I must have a much more serious issue on my hands and will be demanding bone marrow testing!
My wife had long standing neutropenia caused by declining ovarian function that existed before, during and after cancer treatment. She only found this by accident by self experimentation with transdermal estradiol. Other than a few courses of g-csf during chemo, her oncologist couldn't be bothered to investigate.
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I understand completely! I've recently become very undermedicated so I'm sure my neutorphils are lower again - not what you want in the current situation! Really hope the thyroid hormone helps you and you can get yours up too!
Yay ! Graves', TFTs FINALLY in range :) :) :)
Finally going for RAI, I think (after 15 years of ATDs)
Continuing on Carbimazole despite being in range?
At my wits end
GRAVES BLOOD RESULTS
