Advice on Hyperparathyroidism: I wonder if anyone... - Thyroid UK

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Advice on Hyperparathyroidism

engo
engo

I wonder if anyone out there can give me some advice please.

I started having episodes of palpitations around 2 months ago - with sometimes (I suspect) atrial fibrillation.

The worst episodes of atrial fibrillation have taken to to A & E, where it was discovered on the first visit that I had raised calcium - 2.77 I think. The last visit to A & E was on 3rd October - calcium level was 2.83 (I think) and vitamin D 30. I was admitted and was treated with 3 litre of sodium chloride by IV to flush out the calcium. After that I was given phosphate solution due to low phosphate. I have also been given a 5 week supply loading dose of vitamin D.

I have had CT Scan, 24 hour heart monitor and heart echo - waiting results. I am being booked in for an outpatients appointment with a consultant endocrinologist at the beginning of December but I am waiting for the appointment to come through.

After being flushed out with salt water I had been advised to get a blood test on Monday and on Thursday I had booked an appointment with my doctor to try and get things moving, as I am self employed and cannot effectively work, as I don't know which days I am going to have many symptoms - a bit difficult as the last twice I have attempted work - travelling to work I had major health problems and ended up at A & E.

Calcium level was 2.72 from Monday's blood test. I was hoping to be referred for a private consultation when I discussed my symptoms with my doctor. I am not normally one to get angry but I could have exploded. After telling the doctor about difficulties driving and how ill I felt and whether I should try and go to work/driving etc. he said he would no problem.

Has anyone got any advise about how I could move things on?

Symptoms so far are:

Slight headaches (normally I rarely have headache)

Light-headedness (not really dizzy but that kind of feeling)

A kind of slight disturbance in vision (when I close of eye it goes away)

Discomfort under the neck end of my right collar bone (also bottom of right side of neck sometimes)

Strange sensations in chest

Palpitations

Strange sensations in abdomen

Feeling of nausea (particularly first thing in morning)

Tiredness (even several days after palpitations)

Feeling very thirsty (particularly first thing in morning)

Strange random pains in bones, back, neck, arms, legs

Muscle weakness particularly lower legs first thing in morning

After phospahate infusion I and had the following symptoms afterwards: Muscle tremors (large movements) Short spells of crying/laughing for no reason. Slight tremors have continued.

14 Replies
SlowDragon
SlowDragonAdministrator

This website will tell you everything about parathyroid issues

parathyroid.com/about-parat...

This page is probably especially relevant on vitamin D

parathyroid.com/low-vitamin...

They are very clear

If you have a parathyroid tumour vitamin D is low for a reason and giving vitamin D supplements is wrong thing to do

They also have an app

calciumpro.com/high-calcium...

m.youtube.com/watch?v=7EScj...

You need thyroid and vitamins testing too perhaps

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)

engo
engo in reply to SlowDragon

Hi

Thanks for the links - I had read up many of the pages on this site but not the vitamin D page. I did question the wisdom of having a loading dose of vitamin D - I also queried it with the doctor.

Looks like I need to email the doctor before my next appointment in 2 weeks.

I'm surprised you are having so many symptoms as problems don't usually occur until calcium reaches 3 and over, highest mine got was around the 2.8. You may also have a thyroid issue which is making things worse, many people with hyperparathyroidism also have hypothyroidism.

You need to see an Endo who has experience of parathyroid problems, many don't ! and should it be found that it's caused by a tumour it's vital to find an experienced surgeon who routinely does parathyroid surgery.

engo
engo in reply to bantam12

Hi

You can see highest mine was - 2.83 - this is when I was having lots of symptoms. I was having palpitations at 2.77.

I don't get the whole list most of the time. Presently I have a feeling of nausea and a kind of dizzy/lightheaded feeling.

Have you had parathyroid surgery? What kind of symptoms did you have? When I can persuade my doctor to refer do you have any suggestions for surgeons? (You could private message me.

bantam12
bantam12 in reply to engo

Have you got a parathyroid result ? It can take a long time to get a definite diagnoses, when I was running the hyperparathyroid forum people were typically kept in limbo for several years, mainly because Drs are not very good at it !

I had surgery around 4 years ago after a long battle with a clueless Endo who was one of the watch and wait brigade rather than take action.

My levels before surgery were calcium around 2.8+ PTH 8.1 and VitD 12, I didn't have any debilitating symptoms but just generally felt rubbish.

Initially I was given vitd but unless the parathyroid problem is caused by vitd deficiency it's the wrong treatment although if surgery is required the surgeon will want better vitd levels before the op.

You will need an ultrasound and sestamibi scan if an adenoma is suspected.

Our forum is not active these days but all the information is still there to read including a list of surgeons in the ref section although it hasn't been updated for some time and any names on there are not personal recommendations.

Jumping the gun here but if you do need surgery I personally wouldn't go for the minimally invasive op because all parathyroids need to be checked and with the minimal op it can be difficult especially if their location is slightly off.

I hope that helps, be prepared for a long haul but as you are having symptoms you may be lucky in getting a faster diagnosis.

Forum is at hyperparathyroid.forumotion.co.uk

engo
engo in reply to bantam12

Hi bantum12

Thank you for your helpful advice.

I'm not sure why I'm getting such severe symptoms when levels are not high. My doctor seemed to imply that levels would be over 3 before they would consider doing anything. I haven't been diagnosed yet but many things point to diagnosis. I am hoping that the doctor will refer me for a private consultation as I cannot work that much at present because my job involves 100% travel/driving long distances - not conductive to feeling sick, dizzy, tired and if my calcium level goes up to previous level then palpitations.

bantam12
bantam12 in reply to engo

Unfortunately 3 is the magic number, Drs aren't usually worried until it hits that but that doesn't mean there aren't symptoms at lower levels, this is why it takes an age to get a diagnosis, Drs watching and waiting while the patient gets worse ! I have to say that on the forum we have never had anyone with a calcium level over 3, probably because they would be to ill to yell for help !

If you do decide to see an Endo privately choose carefully because private isn't always better, I paid privately but still came up against the brick wall !

SlowDragon
SlowDragonAdministrator in reply to bantam12

So would you recommend engo gets full Thyroid and vitamin testing too?

bantam12
bantam12 in reply to SlowDragon

Definitely thyroid as the two often run together, vitamin testing is probably a good move but apart from vitd it's not something I've ever had done. Engos symptoms are extreme with those levels so possibly other factors need to be ruled out.

engo
engo in reply to SlowDragon

Hi SlowDragon

Which set of tests would you suggest?

SlowDragon
SlowDragonAdministrator in reply to engo

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

I'm speaking from a position of total ignorance here, so bear that in mind.

I've never heard of calcium getting washed out with large amounts of saline before so I was intrigued.

It occurs to me that if saline washes out calcium it might wash out other minerals too. (And vitamins?) I'm thinking of the well-known minerals like magnesium, potassium, zinc, copper and iron, but the list of essential vitamins and essential minerals is quite long. I looked for a list and this one seems quite detailed :

hemophiliafed.org/news-stor...

Edit : I forgot to say what my point was... I wondered if you could develop symptoms from low levels of other minerals that got washed out in the saline as well.

engo
engo in reply to humanbean

Hi humanbean

I have more than a suspicion that you are correct. I also had low phosphate and after the washout it became very low and that's why they gave me a phosphate infusion. It was after the phosphate treatment that I had the laughing and crying attacks and some of the other symptoms actually increased in severity - felt rough for about 10 days and just feeling better. Actually most of the symptoms seem to be related to the electrolytes in your blood being unbalanced - reading the web page parathyroid.com the adult human body does not like calcium above 2.5. In short the washout solved (for the time being) my palpitations but seemed to create other symptoms.

And no one has done an Ultrasound scan of your Parathyroids yet ?

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