Other symptoms/side effects post TT & RAI - Papillary Thy Cancer

[BSGTraveller]

Dear All,

Im male diagnosed with Papillary Thy4. Post Surgery & Rai in Jan17 I've been suffering from symptoms I've never had before:

1/ bacterial skin infection on hands with swelling - have had 4 infections/reactions which docs eventually diagnosed Staphylococcal type infections - I'm not convinced as my RHand has become more sensitive and notable pigmentation/intermittent swelling changes on the Palm.

2/ RHand wrist ache, finger joint aches/stiffness

3/ RH forearm burning, tingling, pinching aches, swelling around wrist, forearm, joint in between forearm and upper arm top and underneath of forearm

4/ pins n needles and odd pinches all around body, burning sensations

5/ constant neck ache and sharp pinch with RH sternocleidomastoid muscle

6/ constant abdomen pain middle of stomach and lower right side is worse around and below ribs - ultrasound revelead a polyp/stone in gall bladder but ct scan showed nothing - GB surgeon examined and advised removal to see if pain goes away - as I'm high risk - I'm very uncertain about this

7/ both hip joints in localised area ache/pinch

8/ apart from fatigue and bouts of insomnia I've lost muscle mass and strength

9/ my recent Free T4 is elavted to 25.4. Supposed to be between 10.0-20.0 threshold

Both oncologist and endocrine docs have refused to accept any link over last 6mths so I've hassled GP and I've sought help of Rheumatologist and Immunologist to test for IGg4, thrombosis etc so far test results don't show anything remarkable except for raised IGE antibody which is elevated suggesting some kind of allergic reaction....but what to I have no idea.

Q1/ is anyone on this forum suffering with similar symptoms?

Q2/ can anyone offer any advice or experience with allergic IGE reactions and maybe suggest ideas for further testing.

Q3/ should I get hormones tested?

Q4/ Are new onset autoimmune ailments commonly linked with Thyroid cancer? and up until now I've never suffered so now I worry there's something developing but no clue and neither do my Uk docs so far - I live with an increased fear, uncertainty and I lack understanding and I feel I'm in process of elimation to discover what's happening with my body.

Q5/ I feel it necessary to have a full round of independent blood tests conducted as nhs and different consultants I'm under care of work in silo so I'm certain not all areas of blood testing including T3 have not been done over last 7 months and when I have I've taken thyroxine ad per my usual am routine- I assume this distorts results? Can anyone advise what battery of blood tests I should do? From vitamins, minerals, proteins, auto immune etc

Thank you in advance to anyone who can offer experiences and insights.

[Nanaedake]

Your problems sound similar to the ones I experienced although I had a partial thyroidectomy. No-one has ever explained it and doctors entirely disinterested. Happy to whip thyroid out but no aftercare. You should be under a multidisciplinary team who should not be working in a silo. I would write to your consultant with your symptoms, copy GP into letter, ask that they discuss your case and create a plan to address your symptoms. I'm not sure you'll get a sympathetic response but it's time the NHS woke up to the fact that they need a cohesive plan to help thyroid cancer patients back to full health.

If you are taking Levothyroxine, consider changing brands. I'm not convinced the NHS has got the quality of the meds right yet. The MHRA are the regulators of human medicines and although they have recently addressed issues of consistency of potency between formulations, it doesn't mean that the quality of the preparations are good enough across all generics. You may find one type works better for you.

Have you had your vit D levels tested? There is recent good scientific evidence to prove that people with thyroid cancer suffer more vit D deficiency than general population. You should have had any deficiency addressed before thyroid surgery. Did they do this? In addition, check vitB12, folate and ferritin. Some anaesthesia can knock out bodies B12 stores for example nitrous oxide

Iron levels could be low so check that too. Doctors will often say all ok if within NHS range but coasting along the bottom of NHS range won't make you feel well, it just means your not going to keel over, get rickets or die of malnutrition. All vitamins need to be midrange with B12 top of range to feel well and for Levothyroxine to work effectively. Get basic voting and mineral tests done. The NHS does not do basic healthcare very well as it is invested in expensive pharmaceuticals. The fact that you may get your health back through basic nutrition and gut care is suppressed by Big Pharma but there's lots of info on this forum and elsewhere. Now you are hypothyroid, your stomach acid may be low. You may find you need to adjust your diet and experiment to find what works best. Low stomach acid means you might not absorb nutrients well even if your nutrition is fantastic.

You could contact Butterfly Thyroid Cancer organisation if you reside in the UK and ask their advice. Please let me know how you get on.

[Marz in reply to Nanaedake]

Any response to your helpful reply ? - maybe a PM ? 😊

[BSGTraveller in reply to Nanaedake]

Hi dosage reduced down to alternating 150 v 125 thyroxine daily this has helped reduced certain physical Symptoms so yes I was being over surpressed.

Have ordered private blood testing await results. And no feedback on others yet. Have been diagnosed with reactive gastritis. And I've been referred to Rheumatologoly & neuropathy. TBA

Best wishes and thanks for your insights