I’m new here but a regular poster on the Pernicious Anemia board as I’ve had PA for a decade now. There’s a history of thyroid issues on my mother’s side and it seems now lymphoma on my father’s side. I’ve been trying to get a diagnosis for seizures that began late 2020 but it’s been difficult to get knowledgeable help, even after my accidental discovery that calcium halts my seizures. After 20 years of a difficult GP regarding PA and seizures I finally lost my patience and changed GP. She checked my neck a few weeks ago because it’s slowly becoming more and more painful and recommend an ultrasound. NHS was initially going to give one this autumn so arranged for a private one yesterday (and discovered NHS one will be next week).
Results from yesterday were multiple U3 nodules including one or two parathyroid. I am waiting for private blood tests for various thyroid related things and a parathyroid hormone test. I know my cholesterol is permanently high at present, and besides the seizures I am starting to get really weighty, puffy face and just last week palpitations.
An FNA was recommended but because they are not quite 1cm he didn’t know if a FNA would be recommended in NHS. It was recommended to see an Endocrinologist and definitely not the GP. My neck is getting sore and just beginning to feel slightly throttled? My NHS scan will be next week but if the results conflicting then I am not sure what to do. NHS has misdiagnosed me at least twice and so my faith and trust is very low. I have to drink milk and take calcium every day to feel reasonable but tired. So my questions are: does this situation sound familiar to anyone, if nhs refuses me help even with seizures how long should I wait for a private FNA, because it’s an unexpected surprise what would be best for me to know about both thyroid and parathyroid issues, good questions to ask, symptoms and management?
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RoseFlowerDew
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Low calcium is know to worsen seizures if susceptible (ie in those with a pre existing epilepsy diagnosis)
What blood tests have you had?
You should have a full thyroid test. Often NHS just test TSH, but you also need FT4, FT3. Thyroid antibodies TPO & TG. Folate, ferritin.
You already know you have a B12 issue.
Vitamin D also need to be tested along with Calcium as in a bone profile.
Calcium should be tested before taking supplements. Usually dietatry calcium is sufficient, extra calcium can be counterproductive. What dose do you take?
If calcium abnormal 2x its important parathyroid hormone (PTH) is tested. Almost always needs to be tested at hospital as sample has to be processed quickly.
Thyroid & parathyroid have very different functions but are located together.
The >1cm nodule to FNA, is a guide. Other ultrasound features can be taken into account. Do what you can to push for FNA. eg say you are keen to have done even if “difficult”.
Private blood tests which can be done via post & fingerpick sample might be best option to make quicker progress.
Thank you! I’m waiting for the Medichecks Advanced Thyroid and PTH test results. You are right, I had to go to the main clinic laboratory for PTH.
Unfortunately it was a complete accident that I found out that calcium stopped my seizures. I was getting the usual bone pain I now associate with low vitamin D and decided in case of osteoporosis I would take it with calcium. It was such a relief but I didn’t know I had to balance with magnesium….caused problems for a while until recently. Unfortunately I can’t stop the calcium now as without it even for a couple of days not only lead to tetany and potential full seizures (no epilepsy diagnosis because of the way the symptoms are its ‘not classical’) it causes me to have heart issues coupled with loss of balance and daytime movement/posture issues.
Thank you for the FNA info as I really have difficulty at times with not getting enough calcium and I guess phosphorus because I feel better with milk than straight calcium supplements.
Nodules are present in parathyroid and thyroid, mixed. So I guess in the back of my mind is what causes both to develop nodules and I suspect until I get confirmation through the blood tests reduction of hormones?
If someone supplements magnesium they must be sure their kidneys are functional. Excess magnesium is excreted by the kidneys.
If someone supplements magnesium and their kidneys are not functional then they could find their magnesium levels rising to dangerous levels.
Low magnesium can cause seizures, tetany and palpitations, and many other symptoms.
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All the electrolytes (of which magnesium is just one of quite a few) need to be kept at good levels - not too high and not too low. If the levels are wrong they can cause many problems particularly with the heart, and there is also the possibility of seizures. If you have more than one electrolyte at particularly high or particularly low levels I think it would be very important to get doctors involved in fixing it because getting the balance wrong could cause some very serious issues - far beyond the scope of a patient forum. Also you would need help from doctors if you needed electrolyte levels to be tested - I am not aware of a private electrolyte test that would cover all of them or even most of them. The NHS usually only tests sodium and potassium, in my (limited) experience but I have seen other members quoting more electrolyte test results.
This is a list of some (?) or most (?) of the electrolytes :
If you've been having problems with low calcium and low magnesium do you have any ideas why they might have started?
There are some genetic conditions which can make both conditions more likely, although I think they would normally have already been discovered soon after birth rather than in adulthood:
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