Thyroid & Parathyroid Help :-(

[Essex21]

Hi All,

I've posted on here numerous times regarding Thyroid and Parathyroid. I've had lots more blood tests done and I'm baffled by the results.

My calcium levels have been elevated for the last 6 months or more, that I know of. I had my Vitamin D checked and it was high 140nmol/L (Australian Ranges 50-130) I've also had all the Anaemia checks which are fine. My PTH was 32.2Ng/L in Nov and today it came back at 61.7Ng/L (Australian Ranges 15.0-68.0 Ng/L) so it's doubled in the past 2 months! My AST & ALT (Liver Tests) have also come back elevated. I had low magnesium and potassium levels in Sep and ended up in A&E having my appendix out due to stomach pains (which are ongoing) only to be told appendix were normal and I needed IV Magnesium and Potassium. I tested positive for ANA but negative for Lupus and Rheumatoid. My Thyroid levels change all the time and I have a lot of Hyper & Hypo symptoms as well as a lot of Hyperparathyroid symptoms. I had a Thyroid Ultrasound (not done by a Endo) which showed a small Cyst but I question whether it's actually a Parathyroid Gland. I see a Registrar Endocrinologist in Dec who was awful and told me my appointment wasn't necessary and tried to fob me off with Anxiety! I hope she chokes on that complaint letter! But I have been told today to seek an urgent Endocrinologist appointment when I return home to the UK next week, god knows how long I will have to wait due to the increased PTH levels and persistent Calcium levels.

Has anybody suffered Hyperparathyroidism? I've done so much research that I actually took my notes along with all my symptoms to the GP as my elevated calcium levels and symptoms were being totally ignored as my gut feeling is linked to Parathyroid and funnily enough got asked how I'm dealing with "life" at the moment and do I suffer Anxiety/Depression, ahhhhhhhhhhhhhhhh that makes me angry! I felt like saying, I'll tell you how "life" is treating me at the moment, it's making me feel like I'm 80 not 30 and like I've been on a 7 day bender, it's making my muscles ache, generally feeling unwell, 24hr brain fog, tummy discomfort, losing hair on the front of my scalp, palpitations, hot sweats, lack of energy and not being in the mood to play with my own children, feeling like someone is pressing on my throat where my Thyroid is, feeling well and truly peed off that I have to live like this because nobody will think outside the box and listen to my symptoms and ask themselves, why does a 30 year old have elevated calcium levels and increased PTH, so to sum it up Doc, that's life for me at the moment! She even said that we know our own bodies better than GP's, that's terrific you think that so why have I been ignored for the past 5 months!

Any input would be great and if anyone recommends an Endocrinologist in the London or Essex area that would be great as I was thinking of going to the London hospitals for my Endo appointment.

Thanks All

X

[Jackie]

Hi I will try and plough through your long e mail later. However, one thing stands out clearly. If those 3 tests relating to the PTH were done AM? Then why have you not had a nuclear scan for the PTH? That is the only thing that shows it. If you do have a tumour then surgery is extremely good and safe. If that is not possible and calcium gets to 3, then it has to be lowered in hospital, on an IV, It is dangerous but the only other option.You also need weekly tests for a bit for Potassium ( U`s and E`s) and separately for magnesium. Both are electrolytes and must be in range. Potassium in the middle of range. If this is not so, you should be having the meds from the GP with weekly tests.This is Endo`s field.

It there is any important point here, get back to me and I will try and spend longer.Click on reply to this.

Best wishes,

Jackie

[Essex21 in reply to Jackie]

Hi Jackie

Thank you for your reply. I have had to push for the PTH blood tests as the doctors weren't concerned about my elevated calcium because they weren't in the 3's, let alone getting the scan. My concern is that it will eventually get in the 3's and I'll be so poorly, I feel terrible everyday. Sometimes I feel like my eyes roll around in my head and the brain fog and headaches drive me mad!

Next step for me in an Endo appointment but I just want something sorted now

[Jackie in reply to Essex21]

Hi no matter why they did the PTH test. Your result proves that you need a nuclear scan, irrespective of any thing else.If the scan proves positive, it is a simple operation but if not done, you can develop all sorts of major problems. I am sure you know this but you must tell the doctor looking after you. There is a lot of ignorance,

The Calcium may not go any higher, but not the point. It is an electrolyte and also high can cause stones etc etc.If you are on any vit D , you must stop it, that often causes high calcium. Calcium is only treated at 3 because so dangerous to treat, by that stage it is more dangerous to ignore.I have a brilliant Endo, all these problems but with severe complications. The pTH is the most concern, without the nuclear scan , which is tricky as needs special diet, coming off certain drugs etc., is the over riding factor. Calcium is never treated if PTH is a problem as that is much safer and simpler.

Please put pressure on your doctors and spell it out for them, ie that they would be personally t blame if any reprocussions.

Do get back to me ,if I a help further.

Jackie

[editfmrt]

As you have done so much research you are likely to have come across this US site:

parathyroid.com/about-Parat...

If not, I would highly recommend a good read and especially noting how hyperpsrathyroidism is so little understood by the medical profession worldwide.

They have also created a diagnostic APP called Calcium Pro for patients and doctors which if you have IPhone or tablet costs 1.49 and interprets PTH cot D and calcium test results:

blog.parathyroid.com/featur...

Don't know how good it is though.

High calcium should never be ignored as you know.

[Lettie999]

You sound EXACTLY like my mum, she is currently on an NHS waiting list awaiting the removal of her rogue parathyroid. My poor old mum was unwell for ages before her GP and a few A&E consultants put all if the pieces of the puzzle together so be prepared for a battle once back in the UK. To be fair the Endo took one look at her results and wrote her up for surgery. Please don't give up on your battle, my mum ended up with sky high chlolesterol and blood pressure plus TIA's before being diagnosed. Good luck xxx

[bantam12]

Your results are odd as you have high vit d which will cause your calcium to be high, are you taking supplements? With high calcium levels your parathyroid should switch off the vit d so you stop absorbing more calcium, so having all 3 high doesn't add up.

According to Dr Norman on the pth. com site if you have high vit d then you don't have hyper pth disease.

I think the docs will want to lower your vit d to see if the other 2 levels go down.

[Essex21 in reply to bantam12]

Thanks all. I'm very confused by the results, especially the Vitamin D, could it be from 6 months of Sydney sunshine? I know I will have a battle when I get back to the UK. I'm not on any supplements at the moment, too scared to put anything else into my body at the moment. Just bizarre how my PTH has double in the last month and calcium levels are always elevated.

[bantam12 in reply to Essex21]

You cannot get high levels of vit. D from the sun, the only way as far as I can find out is through supplements and high vit d foods. Have you read up on hypervitimonsis d?

[bantam12 in reply to bantam12]

Have you taken VitD supplements recently?

[gracelilly]

I live in Woodford. Whipps Cross are the quickest. Part of the Barts Group

[Essex21 in reply to gracelilly]

The only supplements I've taken recently is Magnesium Oratate but I finished those about 3 weeks ago. Apart from the liver functions being slightly elevated this time, the FBC has always been normal. Just read a horror story online about cancers wish I hadn't! Is there anyway elevated calcium and Vitamin D are connected to Parathyroid?

[marmaris in reply to Essex21]

Hello Essex21 I am Hypothyroid and have been for 18 years it is in my family. My father also has it. My sister suffered with her parathyroids and some had to be removed as she was producing too much calcium. She had lots of problems with kidney stones. Best to get it checked out.

[bantam12 in reply to Essex21]

Taking magnesium can increase calcium levels. Phosphate, Magnesium and Calcium are all managed by the parathyroid, they all have to be kept at the right levels so in theory if you have overdosed on Mag then it could have thrown your Cal,Pth and Phos out of whack.

Your Pth is still in range so I don't think they will be bothered by that, what is your Calcium level ?

In hyperpth disease you would normally see

High Cal + High Pth + Low VitD. The Cal and Pth can be normal/high but Vit D is always low.

My Cal and Pth are way over range and VitD very low, I have been diagnosed with hpth but it's not been easy getting there.

[pam13]

Hi.. my mum has parathyroid problems.. it was very hard for her to be taken seroiusly by any doctors.. even when they discovered she has bad osteoporosis... what tipped the balance for her.. was her dentist.. the dentist noticed she had calcium deposits on her teeth.. so when she told this to the doctor.. along with her high calcium and high pth.. they sent her for the radiation scan and now she is getting her parathyroid removed this month.. she also has symptoms of hyper and hypothyrodism.. and her recent blood tests show a high tsh.. so it is possinle to have both... and like you she has a high vit d level.. but she is a sun worshipper and always outdoors.. so I guess.. just dont give up.. insist on getting a scan... the ultra sound isnt as good as the radiation scan... your bones are at risk if u leave it as long as my mum did... good luck x ps mr kennedy is her consultant in northern Ireland.. he is amazing...

[ShakirasMum]

drives you insane when doctors won't listen to you! unless you are a man the thinning hair (male pattern baldness) is one of the signs of hyperparathyroidism. I don't know about the raised Vit D, sorry but I have no experience with that. but I do know what you are going through. took 7 years for my hyperparathyroidism to be diagnosed and the tumour removed. sometimes it makes you want to threaten to sue doctors if they won't act, doesn't it?

[Essex21]

Thank you all. I have terrible pains in my fingers at the moment, have done for some times. It hurts even picking up bags or holding something wrong, it pains my fingers and finger joints. Does anybody know what a positive ANA could be? No Lupus or Rheumatoid Arthritis? Is this to do with Thyroid? I have a feeling of something pressing on my throat all the time along with sensations in my neck and ears.

[Essex21]

Yes and I know that when I return to the UK and see an Endo, I will be palmed off because the calcium levels aren't high enough to warrant seriousness but it's bizarre how my PTH has doubled in a month and nearly at the end of range. I read a lot of Parathyroid.com and it stares you right in the face, you don't have to have off the scale results to be considered for Hyperparathyroidism, they say having elevated Calcium alone is enough and that's without mentioned raised PTH levels.

[Carrob]

Hi, I felt like I was reading my story except I'm 38 and also have depression and anxiety and crying a lot. Whether it's because it's been a year if not being able to feel joy or happiness or energy ,it's like a semi trailer running u over. I've told the endo my throat is hurting now for over 4 months .. My calcium is high end of normal and my ionized calcium is elevated! PTH goes elevated to normal . So how I'm trying to retest. Just be aware that the nuclear scan can be negative even if u have an adenoma. Please check parathyroid.com. I'm in Australia and my ultrasound shows possible adenomas . But sestamibi hasn't and doctors here are not helping .

[Essex21]

This is interesting, found on Parathyroid.com

"Note that most patients with primary hyperparathyroidism (due to a benign tumor in their neck) have PTH levels ranging from 60 to 150. When patients have PTH levels above 200 it is because their tumor is very old (usually this means over 10-12 years old) and the tumor is composed of MANY cells. If your PTH level is over 200, then some doctor somewhere was asleep at the wheel for at least 8 years. This should not be allowed to happen, and the amount of destruction to your body is generally worse. Also note that about 15% of patients that have a parathyroid tumor in their neck will have PTH levels that are in the "normal range". Let us say that again... about 15% of patients with hyperparathyroidism will have high calcium levels and NORMAL PTH levels. Realize that this is still hyperparathyroidism and they still have a parathyroid tumor in their neck... We say their PTH level is "inappropriately normal". In other words, it still shows that there is a tumor full of crazy, out of control cells because if they were normal parathyroid cells they would sense the high calcium and they would shut down. If your calcium is high, and your PTH is not near zero (consistently 20 or below), then you almost certainly have a parathyroid tumor. GET IT OUT!"

[Carrob]

I forgot to say I have high positive ANA and negative for lupus and everything else... The bone pain in fingers happens to me too and muscle pain in things and upper arms . Bone psin in wrists and it does hurt. I used to be able to life weights and do exercise not I can't even lift a heavy bag . So I think u are on the right track . Your blood test is showing something. Me unfortunately is fluctuating so more and more tests need to be done. I hope we all get help soon. It's horrible . Parsthyroid website is spot on with the symptoms