I've been taking 3000iu better you with k2 since Sept 2020 my vit D was 29 deficient, as I was being tested for primary hyperparathyroidism my endocrinologist prescribed the fucuicine those bright blue vit d gel capsules, I didn't feel at all well in fact I felt worse, I was advised to come off them and try the spray instead, I have bowle/stomach problems(lactose intolorent /colitis).. but noticed even with the spray I was slighty worse but couldn't fathom why,.. my vit D went from 29 to 53 in 4 months but on last test decrease to 43...😕due to me having a bout of vomiting I didn't take the vit D for 3 weeks but noticed my bowle/stomach problems eased a bit.. But went bk on after my sickness bout, noticed the bowle/stomach problems returning, I have read on the back of the bottle and it says "can cause an laxative effect" obviously I thought that meant taking to much!! But I'm taking 3000iu 3 pumps per day 1000iu per pump.. So not over doing it.. I'm now looking on amazon for another vitamin D that's gentle on the stomach... But its a mind field 🙁.. I'm unsure what's best for me as my Dr as said I have chronic kidney disease so need to try to get my vitamin D up to help with my parathyroid hormone 🤦♀️
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birkie
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It's honestly a nightmare 🙁 I've spent money on the spray by buying it in 2 bottles, I purchased another 2 before I noticed the laxative effect 🤦♀️.. So since not taking it I feel a bit better in the bowles/stomach, I'm also on teva t4 at 25mg from 50mg just until I get the liquid levothyroxin, but the teva t4 gives me bad stomach and bowle problems, but coupled with this spray I've had a double whammy 😞.. 25mg teva is not so bad but I had very loose bowels with cramps yesterday 😞.. But 25mg is making me hypo.. Hopefully the liquid levothyroxin works for me.. Thanks again seasideSusie ❤️❤️👍👍👍👍
If you really have low vitamin D (and not a parathyroid tumor), for which your doctor may want to give you vitamin D pills, then you should have a normal or LOW blood calcium.
a low vitamin D cannot ever be the cause of high blood calcium. This fact is not debatable. Thus, if you have a low vitamin D and your calcium is above 10.0, then the high calcium in your blood must have come from somewhere else other than your diet (it came from your bones). Thus, if you have a low vitamin D, and a calcium level above 10.1, then you are almost guaranteed to have primary hyperparathyroidism and need surgery to remove the parathyroid tumor. A low vitamin D cannot ever be the cause of high blood calcium.
Had 2 over range pth in 2020 at 8.1...cal.. 2.51)pth..9.5..cal 2.54( Range (1.60...6.90) with 2 endocrinologists saying it could possibly be primary hyperparathyroidism, it's been a long journey and I've posted it on here, my last 2 were (pth 6.6..cal..2.64 adj.. 2.49)and( pth 6 with cal.. 2.54 adj 2.40)..spoke to a parathyroid surgeon on Wednesday who is trying to help me sort it out, first he stated if he had performed my thyroidectomy in 2019 he would have first looked at my calcium over the years being over range,
13/11/15...2.61
14/11/15..2.67
16/6/17..2.89
29/4/19..2.75
24/6/19..2.67
As the surgeon said to me "why were no PTH tested alongside these over range calciums? He told me he would have looked at my parathyroid glands while doing the thyroidectomy, he also told me normally when parathyroidectmy is performed the paras can become hypo so we prescribe calcichews, which I took for 5 days after thyroidectomy, then my thyroid surgeon rang me and told me to stop them, 2 months later I was taken to hospital passing a kidney stone and my calcium was over range twice, I was told to inform my thyroid surgeon, I did but he told me "its OK they are only mild"
The surgeon I spoke to on Wednesday said there could be 2 things going on.. One your vitamin D is low ( its 43) causing the pth to raise, or your surgeon may have damaged or bruised a pt gland whilst doing the thyroidectomy,(thyroid removed 2019) causing the gland to produce more pth, in 2020, but as your calcium and parathyroid hormone have gone bk into range.. (PTH.. 6.6...cal..2.64...adj..2.49)...PTH... 6...cal..2.54 adj 2.40) unless we get a hit on a parathyroid gland through a scan, the NHS will not offer you surgery on those blood results, also he said if the vitamin D is low the first recommendation is vit D supplements to see if it brings the pth down, he understands I have all the symptoms and had and passed kidney stones have a gallstone, he as offered me an appointment with him at Oxford, he as also said he will do a ultrasound scan on my neck and re do all bloods, but get my vit D up.... 🤷♀️.. He also said he is confused as my pth is erratic, so I'm taking him up on his offer of seeing him at Oxford 👍
Oxford is the best place to be if you have HPT ! Are you seeing a Dr K? ( not sure if we can name names) He works at John Radcliffe and a couple of private hospitals nearby.
It sound as if you have had calcium problems for a large number of years and your kidneys have suffered with all the calcium they have had to dispose of over time.
My OH had one bad PTH removed by Dr K in October. He is the best. Do feel free to pm me if I can be of any help.
Yes I spoke to Mr k on sep 9th, what a lovely man🤗 he as invited me down to his clinic for a ultrasound scan on my neck and further blood tests, he says my PTH shows very erratic results as does my calcium it keeps bouncing in and out of range, I have the symptoms ie urinating constantly especially through night, constantly thirsty, I've passed loads of kidney stones, got ostiopeania in spine and right thigh bone, but because my bloods have gone bk into normal range the last being.. PTH.. 6.6..calcium 2.49..(range pth.. 1.60..6.90) my endocrinologist as discharged me and my gp does not want to know😠.. My gp wrote to me this year saying I have CKD but no action needed, I am to day watching the queen's funeral in bed as the last few days I've had back pain and got a trace of protein and PH off in my urine, 😣.. I'm keeping the pain under control with strong painkillers but they totally knock me out😭.. Will probably need to pop a sample in the gp tomorrow.. If I can 😣😣😣
I am sorry you have had to suffer and for so long. Parathyroid is not well understood and we had to push every step of the way to be seen and have all the tests on the NHS before seeing Dr K privately. Thank goodness for the internet !
Dr K is your man and what a wonderful man too. So compassionate and he actually listens to you. Cannot recommend him highly enough. Wishing you back to health very soon.
what really annoyed me was after having my thyroid bloods done to see how my levels were it was then I noticed my 2 calciums were over range, by this time my symptoms had gotten very noticeably worse, I asked my gp to send them to my endo.. The first set of tests the endo did were June 2020 PTH.. 8.1 cal.. 2.51) then Aug 2020.. Pth 9.5..cal..2.52) which in its self showed normocalcemic hyperparathiyroidism, but my endo ignored both these tests, then re did them in sep 2020 with NO PTH.. Cal at 2.44 and vit D at 29 then prescribed me vit D and do the watch and wait approach.. I'm still ill and watching and waiting... For what.. More kidney stone, more kidney infections, worsening ostiopein ect.. Coupled with the fact I'm now hypo because my gp freaked out at my TSH being 0.05..(no thyroid) she decreased my meds🤦♀️ and I'm still waiting on the liquid levoroxine from Aug 3rd been told by my pharmacy they can't source it.. So I'm in limbo with both conditions 😭 it's a living nightmare everyday, really don't know how long I can hang on without intervention from my surgery, I can't see Mr k until the end of Oct as my son as now developed an umbilical hernia and needs to rest up he as a colonoscopy on sep 27th, so I will just have to put up with this until I get to Oxford 😔😔
Dr K will want you to have vit D. I think he recommended 10 k a week for my OH before he did the operation. We just kept an eye on all his blood, which we had taken each month before the op by our GP.
What was your free T3 and free T 4 when your TSH was under range?
Do not hesitate to contact Dr K again for advice, he will not mind at all.
I was trying to get my vit D up from 29...after 4 months on 3000iu I managed to get it to 54 but I always have gut issues its gone bk down to 43 (lactose intolorent And have colitis) I found my stomach and gut issues got worse but couldn't understand why until I read the back of the spray.. It says can cause a laxative affect as soon as I discontinue it my gut issue eased a bit but T4 gives me gut issues also, due to the fillers teva t4 mannitol 🙄(gp decrease my t4 from 50mg to 25mg making me hypo.. TSH 7.4) until I could see the endo, who I said prescribed me liquid levothyroxin because of my gut/stomach issues, I was actually on T3 teva, didn't have any gut issues but my gp kept saying my symptoms ( urinating constantly, thirst, bone pains /vibration being sick, nauseated, palpitations, sweating bad headaches were down to the t3, eventho my t3 was well in range at 5.3 TSH 0.05..she constantly told me it had nothing to do with my parathyroid glands, and if I came off T3 all my symptoms would go.. I'd need to go bk on T4 😠 a drug I don't get on with!! I did just to shut her up.. My symptoms remain its no different weather I'm on T4, T3, and now the endo won't put me bk on T3 😠 she as given me T4 liquid levothyroxin so it's a test time Again to see if this stuff restores my thyroid hormones, the endocrinologist does not want to see me, and my gp as all but given up on me, not even bothered I'm by now very hypo, and not being able to aquier the liquid levothyroxin I've been prescribed, I feel like I'm on the scrap heap I'm screaming my head off with awful symptoms it's stressing me out, I get no quality of sleep due to toilet trips up to 7 times a night, Im always thirsty, dehydrated, in massive body pain like someone has battered my body with a baseball bat 😭 feel sick (like morning sickness) vomit have a bad headache ever day, on and off appetite but the worst symptom is the bone vibration it's like my bones are vibrating like when you sit on your mobile phone😔 it's disheartening because I know something is wrong😭 but no one in my surgery is listening.
Mr k has written a letter to my surgery about my bloods and symptoms but I'm not expecting any response as I've wrote 2 letters to them concerning my treatment by them and receive no response 😔
The article you have posted about not taking vitamin D while calcium is top end or over range is not recommended, and as you say a low vit D will not make the calcium go up its a false assumption, I've tried to point this out to to 2 endocrinologists who in 2020 said I probably have primary hyperparathyroidism, but after seeing my vit D at 29 they jumped on secondary primary hyperparathyroidism instead and prescribed me vit D supplements 🤦♀️
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