[AnnieB3]

http://emedicine.medscape.com/articl...clinical#a0217

If I were you, I'd go see an endocrinologist. Have them check for parathyroid problems!!

This makes so much sense in light of all of your symptoms. Please read it and let me know what you think. Or just call an endo!


Annie

[wild_cat]

Originally Posted by AnnieB3

http://emedicine.medscape.com/articl...clinical#a0217

If I were you, I'd go see an endocrinologist. Have them check for parathyroid problems!!

This makes so much sense in light of all of your symptoms. Please read it and let me know what you think. Or just call an endo!


Annie

Thank you, Annie. I really appreciate the time you have put into thinking about this, it means a lot!

Where I live I cannot see any consultant unless I have a referral from my doctor. At the moment I have been told I will be having no further tests and will see no further consultants.

I wonder how I can approach this matter to my doctor to try and get a referral, without seeming that I have an idea of what is wrong with me? I'd be really grateful for anybody's advice on how to approach making this suggestion.

[AnnieB3]

Where do you live? That would help, for starters. It sounds like you're under the NHS in the UK!

How about you print off the article and highlight the area that discusses what happens to someone when a BP cuff is put on them! Slap a two sentence letter on it and mail it to your primary doctor. And you can say it wasn't even you who thought of it but a patient advocate who thinks the fact that you're not receiving care is BS.

Your situation makes my blood boil. And I'm an extremely calm person.

You may not have a parathyroid problem but this highlights how unscientific your doctors were being about your reaction to the BP cuff.

Anyone else have any ideas?

Annie

Under "Physical" in the article.

Muscle cramps involving the lower back, legs, and feet are common in patients with hypoparathyroidism and hypocalcemia. Tetany develops if hypocalcemia is severe. In some patients, laryngospasm and bronchospasm may be life threatening.

Increased neuromuscular irritability from hypoparathyroidism-induced hypocalcemia may be demonstrated at the bedside by eliciting the following signs:

Chvostek sign: Facial twitching, especially around the mouth, is induced by gently tapping the ipsilateral facial nerve as it courses just anterior to the ear.

Trousseau sign: Carpal spasm is induced by inflating a blood pressure cuff around the arm to a pressure 20 mm Hg above obliteration of the radial pulse for 3-5 minutes.

Hypocalcemia of primary hypoparathyroidism may cause extrapyramidal choreoathetoid syndromes in patients with basal ganglia calcifications.[2]

Parkinsonism, dystonia, hemiballismus, and oculogyric crises may occur in approximately 5% of patients with idiopathic hypoparathyroidism.[3]

Spastic paraplegia, ataxia, dysphagia, and dysarthria have been documented in association with hypoparathyroidism-induced hypocalcemia. Severe hypocalcemia causes papilledema, which improves with treatment of the calcium derangement.

Emotional instability, anxiety, depression, confusion, hallucinations, and psychosis have been described in patients with hypoparathyroidism when the calcium level is low. Normocalcemia corrects these conditions.

Chronic hypocalcemia, as observed in primary hypoparathyroidism, is also associated with ocular cataracts; abnormal dentition; and dry, puffy, coarse skin. In severe hypocalcemia, a prolongation of the QT interval is observed on ECG, and congestive heart failure may develop. Correction of hypocalcemia reverses the cardiac effects of hypoparathyroidism.

In patients with autoimmune polyglandular syndrome, idiopathic hypoparathyroidism is associated with adrenal insufficiency and moniliasis. Moniliasis may affect the skin, nails, oral cavity, and vaginal cavity. It is frequently intractable. The underlying etiology is likely a defect in cellular immunity. Some authors advocate the term HAM syndrome, ie, hypoparathyroidism, Addison disease, and moniliasis (HAM), to denote these cases.

In a study of 33 patients with hypoparathyroidism, Rubin et al concluded that the disease causes bone to assume unusual structural and dynamic properties.[4] Examining biopsies of the iliac crest, the investigators found that, in comparison with biopsies from 33 patients with no known metabolic diseases, the individuals with hypoparathyroidism had greater cancellous bone volume, trabecular width, and cortical width. Moreover, the patients with hypoparathyroidism demonstrated profound suppression of dynamic skeletal indices, including mineralizing surface and bone formation rate.

[mrsD]

Blood work should show low calcium levels.

I was thinking parathyroid also and mentioned it on the hot chocolate reactive thread.

This is rare, and doctors may not have been trained about it.
For example our CMT poster Kitt on PN has mentioned that CMT is not rare even, but doctors only get about 5 or 10minutes on it in school!

People very low in Vit D also cannot absorb calcium from foods, and may have symptoms. Paresthesias may appear first.
The role of Vit D and the parathyroid is complex.

Here is a link: you may have to read it more than once:
http://www.parathyroid.com/low-vitamin-d.htm

[wild_cat]

Annie, you are right! I am in the UK, in a remote area, so limited in terms of what medical assistance I can access. I'm worried about printing things from the internet to send to my GP. I fear he may tell me I'm spending too much time on the internet!

I know that I did have slightly low calcium levels when all my symptoms started three years ago. The limits was 2.10-2.60mmol/L and mine was 2.09. It seems fractionally low. They redid the basic blood work in June and this showed normal results, though I was feeling much better then. I asked them to retake it recently when I became bad again and got the new symptoms, but as they were normal in June they don't feel taking another is appropriate.

I find it slightly concerning that since I have this 'unknown' condition, anything else that comes up, however wildly divergent from my normal symptoms, gets lumped into the same category. The fact that they haven't even attempted to assess these new symptoms is quite shocking, I find.

Can these levels fluctuate and affect level of symptoms?

[southblues]

If you have a very low intake of vitamin D or calcium, that might be causing your problems. It is easy enough to take calcium and D3 pills and see if it helps.

[wild_cat]

Originally Posted by southblues

If you have a very low intake of vitamin D or calcium, that might be causing your problems. It is easy enough to take calcium and D3 pills and see if it helps.

I have tried taking Vitamin D recently but I found that it really upset my stomach. I'm quite worried about taking anything at the moment - I seem to be so sensitive to everything!

[southblues]

I'm glad I didn't know it could cause stomach upset or I probably would have had problems! I take it with no problem. At first I thought it helped. Now I suspect it was placebo effect working.

[mrsD]

http://www.dailymail.co.uk/femail/ar...ness-Week.html

My vitamin D thread:
http://neurotalk.psychcentral.com/thread92116.html

There are now therapeutic creams for those who do not
want to use it orally:

http://www.iherb.com/Now-Foods-Vitam...z-118-ml/40277
This seller ships to UK.

Without testing you would need to start at 2grams a day of this cream...best place is to rub some into the inner arms and wrists where skin is the thinnest...so you would get best absorption.
At this rate of use this tube should last 60 days.

[rach73]

Hi

Wild Cat I am in the UK as well and understand the problems.

Is there any way you could change GP surgeries? I had to change my GP as he told me all my symptoms were in my head (because the neurologist said so) but offered no psychiatrist or treatment to resolve my mental health issues. When I told him I knew what was wrong with me - postural orthostatic tachycardia syndrome and Ehlers Danlos Syndrome I was told it was normal for your heart rate to increase by over 30 bpm when standing and I couldnt have EDS as it was too rare. I had also been told no more tests.

At this point I realised I could continue with no treatment, understanding or name for my condition or I could change to a different GP surgery. I was lucky I went onto an EDS forum and found a lady who lived in the same town I did who told me of a GP who knew and understood EDS and POTS. I moved got the tests and never looked back.

How about finding out if there is a UK forum for people with Endo problems or / parathyroid issues (yahoo groups maybe a good place to start) and see if anyone knows of a good gp or endo consultant in your area?

In the past I have contacted consultants directly and some will be naughty and see you privately without a referral if you could afford to do that? looking at £350 without any blood tests etc.

I hope this helps

Rach