Anyone who has had thyroid cancer with RAI been... - Thyroid UK

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Anyone who has had thyroid cancer with RAI been diagnosed or tested for leukemia after?

Anyone who has had thyroid cancer with RAI been diagnosed or tested for leukemia after? I have had symptoms like weakness and vision problems for about a year and also very low white blood cells (1.8k last week, and normal range is 4-11k). My hematologist informed me at our first appt that people who’ve had RAI are at higher risk for leukemia. I had a bone marrow biopsy done in November and it came back negative but my WBC count won’t go up, even with b12 and iron supplements. Anyone else had related experiences?

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Hi, so sorry you are suffering. This is one of reasons I decided against RAI. I suspect this is a very niche area. I hope you get some answers.

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I suspect anybody who has had RAI and is now taking only levo onlys getting cancer of any type, not just leukemia. I have seen somewhere that patients who have had 2 particular forms of cancer (can't remember which) have been told they are at risk of becoming hypothyroid. That sounds a bit backwards to me. Personally I got kidney cancer after RAI and on levo only.

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And do you 100% know it was caused by RAI ?! Millions still get cancer without RAI.

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I had cancer before I had RAI so I believe there was no connection in my case.

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My Aunty has half her thyroid removed and wasn’t given

RAI.

My other Aunty who has graves was given RAI and after having it she wasn’t too well but a year or so after started to get much better. She’s on Levothyroxine

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Hey there again Bustamove

I've been living with long term consequences of drinking RAI which started some eight years after ingesting the treatment.

I have had no help or acknowledgement from the Nhs though my symptoms are well documented on specialist sites and STTM, Elaine Moore's website and book, and on the McMillan Cancer Care website.

There are full details on my profile, sorry but I find it difficult relating everything all over again.

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Hi, I can’t comment on your question- having no experience there. However, to raise your white blood count- look at taking astragalus and lots of medicinal mushrooms - Hifas Da Terra are good brand. There are a number of herbs that will help but without knowing your medical history/medications it is difficult to give more information. Astragalus is safe to use as are mushrooms.

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I guess I’ll always be worried about this. I had 150 mg of RAI when my thyroid was removed because of cancer in 2009 (also some lymph nodes). Now my white blood cells are so low I practically have no immune system, which sucks because I’m a preschool teacher and I’m trying to get back to work but will just get sick right away unless my wbc and neutrophils go up somehow. I’m having a 😢 day. Thanks for the support. 💜

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I’m so sorry. I was told RAI no real known benefit for low risk cancers. Probably won’t be offered in a few years and a clinical study in UK currently where computer randomly places you in RAI and non RAI group. So they obviously feel no RAI is OK currently, or wouldn’t risk it.

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Hi Bustamove86, I have also had thyroid cancer and RAI at a fairly young age. I was 33 when first diagnosed, and that was 7 years ago. I don't have any specific advice, but I went back and looked through your past posts to see what your thyroid treatment is like. My first thought was to ask if thyroid replacement is optimal, and to look into vitamins.

I couldn't find a complete thyroid panel (TSH, freeT4, freeT3), but found a few snippets. Looks like you're taking 175mcg or something like it of T4, and 5 or 10mcg of T3, and your freeT4 and freeT3 have both been well below halfway through the range.

To me this suggests you're very undermedicated. The ideal blood tests when on thyroid replacement boils down to having a good freeT3. This is a measure of the hormone we've got in our blood, and is effectively what powers every tissue and organ in our body, and without it everything will be running more slowly. Most people will feel well with the freeT3 in the top third of the range. Of course doctors often disagree and will keep us on low doses or adjust dose based on TSH instead of freeT3.

Something that's started to happen to me, after 6 years of being ill, is that I'm now starting to develop other health complaints. I'm being referred to a few specialists per year for my blood, brain swelling, heart arrhythmia, and also get a lot of injuries and infections. My feeling is that all of this is just about the thyroid. I wonder if this could be your primary situation? Your body has put up with a lot of nonsense for a long time, and things just start to break through and go wrong. Again doctors tend not to look at the big picture. I was recently in the haematology department because I've got the opposite problem, raised white blood cells for several years. Towards the end of an invasive examination, I finally realised I was being checked out for a couple of types of cancer, but the doctor wasn't at all interested in making links between my haematology results and the fact I've been ill for years and have loads of symptoms.

Other than that I'd really advise you not to get carried away by worries. One thing I feel illness has really helped me with is realising there's no point in suffering over things that haven't even happened yet and might never happen. I find mindfulness really helps (as well as other health benefits), and also inspiring writers like Dear Sugar.

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Dear Sugar columns: therumpus.net/2010/07/dear-...

How to be Sick, a book that has really helped me, as well as a lot of other Buddhist inspired things like Pema Chodron: goodreads.com/book/show/790...

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I just officially registered as a patient at the Mayo Clinic. 💜🙏

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Not sure how to add photo of my lab results

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