I wonder if anyone can help with the interpretation of my blood results.
I have been having tests for hyperparathyroidism but have had thyroid check to rule things out, as been having a lot of symptoms including - sweaty palms and feet, increased heart rate, nausea, headaches and more.
I have seen various endocrinologists and have been to see 2 different consultants privately - that's the reason for these tests. I'm trying to get an NHS referral from my doctor to go back to continue 'work-up' and diagnosis. It is thought that I have hyperparathyroidism. Not sure when I will be able to get back to see them - feel I need some information to go to GP with as not been at all helpful so far.
MY adjusted calcium level has been between 2.67 and 2.83 - high on every blood test (10) since September last year. My PTH (4 tests) between 3.00 and 4.50 (un-suppressed). Vitamin D has been down at 30 - now on vitamin D3 20,000 units 3 times per week now back up at 52. Phosphate is low to very low on blood tests.
Have you had an Ultrasound scan of your Thyroid and Parathyroids yet (forgot to ask that one!)?
I'm not medically qualified and have no personal experience of Hyperparathyroidism or Hypercalcemia.
I had all the symptoms of Hypoparathyroidism and saw on the Internet that a treated Vitamin D deficiency could reveal hidden Hypoparathyroidism (that was after Endo ordered the scan).
I had the scan which revealed a 2mm growth on one of the Parathyroids but my calcium & phosphate levels both ok so Endo wouldn't even test PTH. Being monitored with scans though. I wouldn't want surgery anyway and the alternative management of Hypoparathyroidism is Vitamin D - which I am on.
BUT your situation is different. You seem to have a confirmed diagnosis of Hyperparathyroidism but not currently seeing a Specialist ???
There is an NHS article - you could Google NHS Hyperparathyroidism. I cannot vouch for it . I've found some NHS articles helpful and others not. For example - I have a rare bowel condition which neither NHS website (nor Wikipedia ) seem to have a clue about.
I would be asking GP what your raised TgAb indicate and what further tests you need.
Ask about the scan.
Ask if they are waiting till your Vitamin D level improves & then taking all the tests again.
You need adequate Vitamin D for correct absorption of calcium - without enough Vit D, calcium can go to the wrong places (blood vessels and tissue) and not go to where if should - bones etc.
Has anyone mentioned a DEXA scan? Ask GP if you should have one??
Edit:
Hi again
"I've just Googled and read that a Vitamin D deficiency can cause Hypercalcemia. Treatment may correct the Hypercalcemia. However, sometimes a Vitamin D deficiency can mask Hyperparathyroidism. "
Hopefully if I can get a referral to consultant I will have a DEXA scan and also an ultrasound of thyroid.
In the UK there seems to be some confusion regarding hypo/hyper - sometimes the consultant may think that the parathyroids have become overactive due to low calcium and then do not 'switch off'. If your calcium is in the normal range how is it that you have a diagnosis of hypoparathyroidism? Especially with a 2cm growth it sounds like you have hyper! Do you have your actual blood results?
I don't have a diagnosis of Hypoparathyroidism - I said I had all the symptoms of it but bloods normal.
I don't have a 2cm growth ! The Parathyroids are only 2mm in diameter.
Why don't ask your GP to request an Ultrasound scan of your Thyroid and Parathyroids? That could be arranged quickly, whilst waiting for an Endocrinologist appointment.
As I read the symptoms at various sources it seems that there is a bit of an overlap on the symptoms for hypo and hyper - with exception of the tingling/pins and needles in fingers and toes.
I am seeing GP tomorrow so will be asking all these questions. Did yours show up on an ultrasound or CT scan? 2mm really quite small.
Has high calcium result only started after being prescribed high dose vitamin D?
Supplementing high dose vitamin D will almost always raise calcium levels
That's why it's recommended to also supplement vitamin K2 Mk7 when on high dose vitamin D. Thus helps direct excess calcium into bones and out of blood
My symptoms seemed to kick in in August but possibly brewing for some time before then.
I was prescribed vitamin D3 in October and took for 5 weeks (had low vitamin D, high calcium and un-suppressed PTH at the time). GP was meant to prescribe a maintenance dose and did not so level went back down to 30. Just started loading dose again after visiting private endocrinologist.
Since August calcium has been between 2.68 and 2.83 on 10 different blood tests. PTH between 4.5 and 3.0 on 4 different tests. I also have low phosphate.
Yes I got the app from Norman Parathyroid Centre and app clearly indicates a very likely - I am more than 50% through that last quartile (very likely).
I have had a Seimsbi scan - but CT only which did not localise a problem.
I was quite annoyed with NHS endocrinologist because after relating my symptoms - high pulse and palpitations being the most concerning he ruled out the palpitations being anything to do with high calcium and said so you're asymptomatic - come back for monitoring in 6 months - after I had gone he then ordered the scan but with a negative no further action.
The private consultant thinks there possibly could another reason for the high calcium - hence the thyroid tests and also had Metanephrines (adrenaline noadrenaline tested but waiting results.
Hoping to get a referral from my GP to go and see present endocrinologist through NHS as costs are going to soon mount up.
So I have tagged and may pop along and make suggestions
I'm going through the same thing. My calcium slightly elevated at 2.73 but PTH 10.5. Vit D was low last summer so got prescription for Vit D and my folate was low so now currently on Folic Acid. My b12 was 220 (ref 200-900 I think) ferritin 19 (ref range I think 12-150) so both on the low side of the reference range. CRP just said below 4. I'm in limbo to see if I'm being referred to an end but had no scans of my neck yet.
Forgot to add that I've just had a bone profile blood test carried out this morning but won't know results till next week as it's Easter
How long have you known about your high calcium? The reality is that it may never get much higher than it is now. Low vit D and low phosphate are a side effect of Hyperparathyroidism as far as I can make out. If you google Norman Parathyroid Centre you can learn a lot more and there is an app available there. With a PTH of 10.5 I'm surprised you have not had a scan.
Hi Engo, I've literally just found out this, via the Gastro team I was seeing at Salford Royal. TBH 4 years ago I had similar calcium results but my vit D was only 12 at the time so extremely low and PTH was about 8.3 then I think but not sure. They thought only secondary parathyroidism due to low vit D once that recovered after 3 months of mega vitamin d3 they said it had all settled down. I ended up in A&E last July vomiting and diarrhoea and again had bloods done treated with fluids and anti sickness and again calcium was raised. I thought ok so went to GP and asked him to check vit d again as calcium was up a fraction and I was low again but only 26 this time. I mentioned this to my gastro consultant at the end of March and she tested my pth, calcium and all things relevant and voila. The mention of writing to an endocrinologist for recommendations. So at the minute just starting this and still don't know for sure. However just downloaded the app mentioned earlier and put in my results or as best as I could interpret them and it went off the scale for primary hyperparathyroidism. Then I looked at the other stuff and thought oh my I've been having a lot of that too. Irregular heart beats, joint swelling and inflammation and extreme fatigue.
Must add that over winter I took prescription vit D for 7 weeks and my level at the time of the pth and calcium test was 71.2 so within range. Not high by others but ok
Thank you for the valuable feedback. It sounds like you have a lot of the same symptoms as I have - although I have not had diarrhoea. My worst symptoms have been fast heart rate (when it does this I feel very ill) and palpitations. I have been driving twice when it happened and felt I was going to pass out. Indecently I also had them 3 years ago and attended A & E at Salford Royal, they did not tell me at the time but apparently my calcium was high then. Since August I've attended A & E 4 times with palpitations. I've had 24 hour monitor and ECGs and worst picked up was ectopic beats - nothing remarkable.
Interestingly all my endocrinologists I have seen NHS and private have downplayed the heart symptoms - one flatly denied it was anything to do with high calcium because my calcium is not high enough.
When reading all the information on the condition what never comes across in any of the material is the variableness in severity of the symptoms to barely anything to severe over a period of time.
I think the vitamin D is a bit of a rouse to be honest. There seems to be this theory that the parathyroid glands are making PTH because the calicum level is low (due to low vitamin D) then for some reason do not stop when calcium gets over limit.
Anyhow sounds as though you should easily get sorted when you see a specialist as you have high PTH readings - mine are in the normal range but unsuppressed but my results on the app predict hyperPT.
Maybe who the hell knows. It was only because I'd mentioned it to my Gastro doctor that she listened. I had my gallbladder removed 4 years ago due to gall stones and also have raised fecal calprotectin. So was seeing the gastro for big bile ducts and gut inflammation. Will gut inflammation go down if this gets sorted as nothing seen when I had a colonoscopy apart from polyps?
I've read this can cause stomach pain and diarrhoea/constipation???
I don't know but day to day life is totally miserable at the minute. Before I had my gallbladder out I mentioned palpitations and at the pre OP they did an ecg and said AF. GPs put it down to low B12. I've been having issues stomach wise mainly over the last two years and lost over 30kgs in that time. I go through phases where things seem ok and I put some weight back on or maintain but I've lost more since January this year. I weigh the same now as what I did when I left school. Don't get me wrong i had the weight to lose but not like this.
I really hope you get some answers Engo.
Maybe if the referral from the gastro team to the Endocrinologists at Salford does come through I'll let you know what happens and also if my bone profile comes back next week I'll let you know if anything shows up.
Interesting my calcium isn't that high either but always slightly over the reference range.
AF is a symptom of high calcium so you need to tick that box.
From what I've read it is not how high your calcium levels are it's how long they have been high for. In general it seems the longer they are high the worse the symptoms. Possibly the other thing that may possibly happen is that calcium level may rise quickly and that can cause symptoms.
Sorry to hear that you are so unwell - I felt really rough September through November. Just wondered if you are working at present, this is my main area I need to juggle around my health problems.
Hope you get that appointment soon - you should really chase it up with your GP and ask for urgent appointment.
Yes I am working. It can be awkward at times but I can work from home which on bad days is a blessing xxx. I think with the gastro consultant writing direct to Endocrinologist it may not take as long but who knows.
Plus I think there are people with similar issues who are perhaps in more priority
High Thyroglobulin antibodies might be a concern, a thyroid scan or palpation by a trained medical professional should be adequate to rule out any issues, as your thyroid blood results look reasonable (unless you naturally have a very high metabolism). E.g. my fT3 should be around 6.0 (I have an identical twin brother without thyroid disease, and thus he acts as a healthy control for my ideal range).
CRP-HS shows there is likely very little low-level inflammation occuring, so that's great. Your Iron/Ferritin is good also, it should ideally be 80-100, although your level is not dangerous or harmful AFAIK.
Serum folate is not deficient, but could be a little bit higher for optimal health. A regular 100% RDA dose B9/folate supplement should be adequate if you're not already taking anything.
Vitamin D is on the low side, as you know. Once you have completed the loading dose, I recommend supplementing at least 75mcg/3000IU per day (no higher than 100mcg/4000IU long-term) to sustain higher levels. The average person can safely take 4000IU/100mcg per day without issue.
The Vitamin D council recommends ideally you should be in the 40-60ng/ml range. This translates to 100-150 nmol/L (serum 25-Hydroxy Vitamin D).
Note: do not supplement excessive Vitamin D if you have raised calcium levels or PTH issues as this can make the problem worse.
I'm on loading dose of vitamin D - I have high calcium with PTH levels up to 4.5 (unsuppressed). Endocrinologists seem to love prescribing vitamin D - with an aim to rule out hypoparathyroidism.
I'm trying to get a referral to NHS at present to consultant of my choice.
If a doctor has prescribed you Vitamin D, then it is likely fine to take. I suspect they are trying to rule out inability to absorb calcium due to deficiency. In this case, other blood electrolytes and magnesium levels should be considered too.
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
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