I can’t answer your question but by replying I’ll bump it up the list of posts and also ask you for a few answers that others might need to know to be able to help you.
How long ago was your Levo reduction?
How much are you on now?
What were your most recent TSH FT4 and FT3 results?
PTH, calcium and vitamin D results and what other treatment/hormones/meds you take, supplements, vitamins?
You lucky thing - autoimmune hyperparathyroidism is really quite rare. (And yes, of course that was tongue in cheek, so written while sending you a very big virtual hug xx). It’s definitely autoimmune? They’ve diagnosed that properly?
Reason I ask is because I’ve literally just read a research article that says
“Proper diagnosis of normocalcemic primary hyperparathyroidism is challenging, because there are several other causes of high parathyroid hormone levels and normal calcium levels.”
Which is enough to make me wonder whether they gave up looking for a different explanation much too quickly…
Despite the similarity in name, the thyroid and parathyroids don’t have a lot to do with each other. It’s simply that they’re located next to each other. So when most people come here to mention parathyroid issues it’s because they’ve been damaged during a thyroidectomy. That’s not what’s happened with you.
But if your hyperparathyroidism isn’t being optimally treated it’s going to cause some unpleasant symptoms that will probably feel quite like undermedicated hypothyroid symptoms.
What are your vitamin D levels looking like at the moment?
Thank you very much for your reply, I'm really interested in finding out more. Firstly no I haven't had any operations in my neck or my thyroid removed.
In May 2015 My Para hormones were very high and guess what they just ignored it. Even though I was very ill. Plan of action was fill me up with 2 types of anti-depressants to max dose as all my symptoms were all in my mind.
May 2023, my gp asked why are you taking VitD + Adcal ? I said to help my thyroid and parathyroid. Gp. said you don't need it. She took bloods my PTH was 10.25 which I have no idea what this means, but I think is slightly raised. I was referred to an Endocrinologist whom sent me a letter with the diagnosis of hyperparathyroidism normocalcaemic and said the PTH was still slightly raised but didn't need any intervention. At the same time he reduced my Levo and I have been unwell since the levo was reduced.
My Vit D score was 64 on the last test, I don't have any ranges.
Everyone has been so kind and helpful on here with advice on the levo reduction, but I was thinking about what symptoms the parathyroid was or are not causing.
“Proper diagnosis of normocalcemic primary hyperparathyroidism is challenging, because there are several other causes of high parathyroid hormone levels and normal calcium levels.”
I don't know how he made the decision? He had none of my medical history as I've just changed hospital and moved to a different county, due to house move. He seemed more concerned with a TSH of <0.05
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