Hello to you all. I haven't been active for a while as my kidney problems took over. Last week I had a thyroid scan and apparently my thyroid on the left side has grown under my clavicle. According to the radiographer, the next step is up to me. I have looked on line and I seems to have a substernal thyroid. At the scan before this one five years ago, no one mentioned that it was growing The right hand side hasn't grown as much. I have had a multinodular goitre for a long, long time.
Five years ago I had a kidney removed as it had a large tumour on it, and in order to keep my kidney happy I eat what is good for it i.e. vegetables, plenty of oats and other carbs. I am quite restricted with what I can eat. I have been eating lots of goitrogenic vegetables, and I am wondering if this could have blocked the iodine and therefore made my thyroid grow. Sorry if this sounds like fantasy! I self medicate on Thyroid S and have felt very well with it. I have a phone consultation next Friday with the doctor and wondered if anyone had any experience of a substernal thyroid themselves. Thank you so much if you can help.
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Ballito
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Sorry, I can’t help you regarding your thyroid, other than thyroid and kidney function seem to be linked (or my research recently suggested that). I’ve also been told I have a non-toxic multi nodule goitre and am at the ‘wait and see’ stage.
I’m mainly replying to pick your brains, the kidney site on HU are mainly concerned with 2 failing kidneys and their info doesn’t seem relevant. I also had a kidney removed, just before last Christmas, same as you, due to a large tumour (clear cell RCC). The only dietary advice I’ve been given is to watch the salt, stay hydrated (though they apparently don’t mean drink lots!) and diabetes is REALLY BAD for kidneys. What other advice is there? I eat plenty of veg, but not a huge amount of carbs.
Hi Beads, Unfortunately I have had the same experience as you with practically no help with food. At the moment my eGFR is 61 which I am happy about, but I do eat lots of carbs to fill up. My knowledge is what I have managed to pick up on line. Salt is the worst thing, so no processed food. No red meat. I make oat flat bread. I was told I was borderline for diabetes but sometimes I just need something sweet. I make my own oat milk which is just oats and water wizzed up and put through a strainer if you wish, so no additives. It is a problem what to eat and I am not so strict with myself as I used to be as I have gone down to 41 kilos and cannot afford to lose any more. I hope this helps. Thank you for responding to me.
Hi Beads. Something which might help you to find recipes for helping your kidney. Look on the Natural Kidney Journey site. You will have to join but it is a lovely community and the Kidney Warriors share recipes and photos of what they have cooked. There might be a waiting list to join. Best wishes.
What are your most recent thyroid and vitamin results
TSH, FT4 and FT3
Do you have Hashimoto’s?
Need TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
On NDT….Day before test split dose in half, last dose Approx 8-12 hours before test
This gives highest TSH and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Hi Slow Dragon. I have replied to you, but in the wrong place and I cannot find my message again. Afraid in a bit of a mess in the moment. Please give me some time to find and copy again to you. I cannot seem to think what I am supposed to be doing. Thanks..
No, I was on NDT years ago when we lived abroad but when we came back to UK I was without medication for 30 years as I was told my thyroid was ok. It was only after TUK help that I was given the help and support that I self medicated and I have been so happy having the confidence to do it.
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