Hi New Member

Hi, I am Kathy and looking for some advice. 

I apologise in advance for the rambling post.

I am now 57 and have been struggling with muscle pain and weakness since I was around 48 years old.

It started as exercise intolerance.  So stiff after exercise I can hardly move.  Also I still seize up after a long journey in the car.  I get muscle pains that feel like slow cramps.  My muscles are usually very tight, so much so they pull on my achilles tendons.  I also feel knotting and get an odd trigger point now and again.  I get pitting edema around my legs and ankles.  When this first started food also caused me a lot of problems.  I thought I might be diabetic. (I wasn't).  I also had a lot of bone pain (bottom of my back, stabbing pains in hips and top of my spine which resolved with the vit d supplements).

Anyway, after 2 years of going to the doctors and numerous tests I kept insisting that I had some kind of vitamin deficiency.  (A few years previously I had to take my own cold meals to work due to a mid shift change and no access to cooked food or a microwave).  Part of my meal was that I drank a lot of evaporated milk with strawberries - I felt fantasic. My muscles were back and boy were they fast.  I felt like a kid again.   So I went back to the doctors and was told to keep a food diary - and of course I went down the route of a food allergy). 

Eventually they tested my vitamin D and I was down to 13 (uk levels).   By this time I couldn't turn over in bed, couldn't get up off the floor and waddled when I walked.   My body felt like it was bubbling and I felt ready to collapse. I had gone from a very fit 48 year old female that could walk 54 holes of golf to feeling about a 100 years old and couldn't even get out of the chair and had to roll out of bed.

My calcium tested 2 years before Vit D diagnosis was 2.34 and 2.24 corrected.   I was given high loading doses to bring my vitamin d back up.  Which has worked.  I have not had my calcium levels retested by my doctors.

Now neary 3 years later, I have never got my muscles back.  I am still so stiff after excercise that  I can hardly walk.  Still getting muscle pain/slow cramps, toe cramping and weakness. I have a lot of stomach acid and "pee" a lot. My memory is also poor.  Not as bad as it was but still not good.  Some days are worse than others.  I very very rarely feel hungry and have been that way for years.  I basically eat because I like food (slightly overweight).    I did a very vigorous walk last year and I am sure I have been left with permanent muscle damage. I couldn't lift my legs up when I managed to get back in the car.  Could'nt get up out of the chair.  Felt awful. We were on holiday with the family at the time and I didn't want to make a fuss. To me it feels like all the old Vitamin D symptoms are back with a vengence. My vitamin D levels are fine.  I am on 800 units a day maintenance dose and I insisted that they retest my Vit D which is at 88 and fine.

I have mentioned numerous times to my GP that when this started I shouldn't have been vit d deficient as I was a seriously keen golfer, out in the sun for hours and didn't use sunscreen.  

The Doctors are still basically fobbing me off...  " Arthritis.   Not warming down after exercise.  Blood flow problems so keep active.   You will just have to live with it. Nothing to show on normal blood tests". etc. etc.  

I still can't play golf as I get exhausted during the round and can hardly swing the club.  I also get stiff whilst playing then totally seize up afterwards.

 I did ask if it could be a parathyroid problem and the very "lovely" doctor said "I have seen hundreds of patients with vit D deficiency and not one had parathyroid disease. It is extremely rare."  So that was the end of that.

Anyway, I have found by accident that dairy in larger amounts helps with the cramps, muscle tightness and pain in my hands. But it does not last.  So thinking I might be low in calcium I  had a bone profile done privately.  Could you give me some advice on the results and do you think it is worth testing calcium. phosphate  and parathyroid together in another month or so.   I have seen one test for PTH privately on the internet but I am unable to travel to London to get it done.   (I am in the Midlands).   Do you also think it is worth increasing my dairy intake even more.  I am wondering if parathyroid can push down phosphate so much that it can cause these muscle problems.

Sorry for the rambling post. Here are my bone profile results.

Total  Protein    69                      g/l                        range 63 - 83
Albumin            43                      g/l                        range 35 - 50
Globulin            26                      g/l                        range 20 - 35
Alkaline
Phosphatase     98                      IU/l                       range 30 - 140
Urate               298                  umol/l                      range 140 - 360
Serium Calcium  2.51                  mmol/L                    range 2.20 - 2.60
Adjusted
Calcium            2.53                  mMol/L                    range 2.20 2.60
Phosphate        0.9                   mmol/l                     range 0.8 - 1.5

I feel now that I am on my last chance with my GP and I dare not go again unless my results are out of range.  

Any thoughts you may have would be appreciated.

Regards

Kathy

Hi Kathy, welcome to the forum

Your results don't shout a parathyroid problem but that doesn't mean there isn't one lurking in the background, calcium is possibly slightly high end of normal but could be normal for you. Low phosphate can be parathyroid, thyroid, renal, low vitd along with many other causes, have you had thyroid and renal tests done ?

If you can get these done along with calcium and parathyroid you might have a better picture of what is going on.

The swelling in legs and ankles could possibly be caused by renal problems but could also be other things. Muscle aches may be parathyroid, thyroid, low vitd, fibromyalgia (which is connected to thyroid disease) but again is difficult to guess at without further results.

I think if you can persuade your GP to refer you to a Rheumatologist for the muscle problems and an Endocrinologist if your calcium, pth and or thyroid results come back out of whack then you may get somewhere but be prepared for a long battle, when results don't show an obvious problem it can be difficult to get a diagnosis.

I have to dash out right now but will be back on later so do post again if you have more questions.

Nelly

Welcome Kathy!

Wow, it was like I was reading about myself as I was reading your post!    There are many similarities between your case and mine, and I will start off by telling you I had 2 parathyroid adenomas removed 2-1/2 years ago.

First of all, your calcium at 2.53 is too high for your age.   I am in the US.   I always have to convert the levels so I can better diagnose cases.   Your calcium level converts to 10.1 in the US.    When my calcium was first tested at the age of 57 (yes, the same age as you are now), it was only 9.8 in US numbers, which would be 2.45 in the UK.    My PTH, however, was very high at 112, which would be just under 12 in the UK.     When an adult's calcium is near 10 (2.5 in the UK), the body should not be trying to take the calcium higher by having the parathyroid glands secrete extra hormone to accomplish that.   In other words, if an adult's calcium is near 10, the PTH should be very low.    If you have not had your parathyroid hormone (PTH) tested, you need to do that.   That is the only way you can diagnose hyperparathyroidism.    It is the correlation between the 2 numbers which is used for a diagnosis.    And I would be VERY happy to help diagnose you if you could get your level tested and share that with us.

I too had very low vitamin D when it was first tested (at the same time my calcium was at 9.8, and my PTH was at 112.    My endocrinologist also prescribed vitamin D to raise my levels.   At one point, my vitamin D was as high as it could be without being flagged as high, but it did not take care of my problem!   I still had PTH that was too high for my calcium, and my calcium gradually kept climbing.     I told my doctors I was not going to take the vitamin D any longer, because I knew I had hyperparathyroidism, and the increased vitamin D was not going to help!   They thought I was nuts, but I stopped taking it.

I would also like to say that my highest calcium before surgery was 10.7 (2.68 UK), but I had many calcium levels within the normal range before surgery.   The PTH was always too high for the particular calcium levels though.

I too was told by 3 different doctors that there was no way I had hyperparathyroidism, because my calcium was not high enough.   WRONG!   Again, it's the correlation between the calcium and PTH that matters.

My endocrinologist told me that she had a few other patients with hyperparathyroidism, and they did not have the symptoms I had, so therefore, I did not have hyperparathyroidism.   Again, WRONG!

I could not get diagnosed for 3-1/2 years, because they felt my calcium was not high enough, my phosphorus and albumin were always normal, my ionized calcium was always normal, my urine calcium was always normal, I did not have osteoporosis or even osteopenia, and I had no kidney stones.   I did have a LOT of other symptoms, including terrible acid reflux and irritable bowel syndrome, brain fog, heel and foot pain, brain fog, and the list goes on and on.   And I had a PTH that was too high for my calcium level!

I had several different health issues going on at once, which complicated things, but there was no reason my doctors could not diagnose the hyperparathyroidism, other than they are just not properly taught how to do so.

I too have suffered a LOT with pitting edema over the past 35 years.    I had bouts of it throughout the years, but for the past few years it has been constant.    Through the years, I blamed it on the thyroid problem, but when the thyroid levels started looking good, and the edema worsened, I started to suspect other causes.    I learned that iron deficiency can cause edema also.    I started treatment for my iron deficiency, and the edema did not improve.   I think we have finally figured it out!     I had been suspecting a cortisol issue for many years.    Well, I was just diagnosed with adrenal insufficiency and started treating it.   The edema is FINALLY improving!    There is quite a difference!!!    So, you might also have more than 1 endocrine issue going on, which might be causing the edema.   I'm not saying it's adrenal insufficiency, but several endocrine issues can cause the edema.

I would be very interested in knowing your PTH level.  I do hope you can get it tested and post it here.    I would love to help you get diagnosed, if this is your problem.

Audrey

Hi Kathy

Yes, I can echo everything that Audrey has stated above - even down to you sounding just like me at the same age! I had 3 hyperplastic parathyroid glands removed in Dec 2014 and feel sooo much better as a result.
There turned out to be other additional issues for me too, but a lot of the PTH symptoms subsided after surgery.

Audrey and Nelly are right that you need to have your parathyroid hormone level tested at the same time as calcium, as it's the relationship between the two that is important. Not many GP's or endo's understand this fact though.

Have a look at www.parathyroid.com to get as much information for yourself as you can. The Diagnosis and Vitamin D pages are particularly valuable.

If you are near Birmingham, there is someone useful at one of the hospitals there and I will try and dig out his name. If you can get over to Leicester, there is a Dr Miles Levy at Leicester Royal Infirmary who understands about parathyroid disease. It might just be worth the £200 fee to consult him sooner at Spire Leicester, which is what I did, and then he transferred me over to his NHS clinic for further testing (as it is the tests that come expensive if you have them done privately).

Could you serum calcium of 2.51 and corrected calcium of 2.53 be reported the wrong way around? Just a small detail, but you have a healthy albumin level which would normally mean your serum calcium is "corrected" downwards, rather than upwards. That was a serious problem for me, as my endo always said that my serum calcium was a "little high", but "look, your corrected calcium is lower, so can't have a problem" !! (There is also a school of thought that believes that a high albumin should ensure that the serum calcium is adjusted upwards, and not downwards, but I could chat all day about that, so we won't go there!)

You will be able to see from the parathyroid.com pages that Dr Norman believes that a low Vit D is a protective mechanism when serum calcium is high in its range ( and it's a very tight range: 2.2 - 2.6) whereby the body is keeping Vit D low so as to try and ensure that it doesn't do it's great job of aiding calcium absorption from the gut when calcium is already high enough. So Dr Norman would say that a low Vit D and a high-in-its-range serum calcium are an indication of parathyroid disease. If the PTH level were also high in its range, then that would be inappropriate (as in health they live in an inverse relationship) and a good indicator of a PTH disorder (adenoma or hyperplasia of the PTH glands).

Sooo, you need to have your parathyroid hormone level tested at the same time as the calcium. Have a go trying to get your GP to measure this. If he won't do it, you'll have to ask to be referred to an endo, but you need to have one up your sleeve already who knows about parathyroid disorders so you can ask to be referred to someone who knows about the condition (Dr Miles Levy, maybe).

Let us know how you get on, Kathy, and we'll continue to answer your questions and support you.

Best of Wishes, Tigerlily.