Labs don't support symptoms

Hormones
1

Hi, 

I've had symptoms that have gotten worse over about 10 years. The main symptoms are bone pain, thirst, urinary frequency, chronically loose skin and weak muscles from dehydration, indigestion, weight loss, and diarrhea.

I've taken lots of medication over the years, mostly for gastrointestinal issues, although none of the medications have really helped. Recently I started taking boron (between 3 and 9 mg per day) even though recent labs came back "negative" for hyperparathyroidism. In all my time taking prescription and non-prescription medications, the boron has helped me the most. It's helped me gain weight, reduced urinary frequency (from about 9 or 10 times per day to about 5), helped with thirst, and reduced bone pain.

Most recent lab tests are the following: PTH: 21 pg/ml, Vitamin D: 36 ng/ml, Calcium: 9.3 mg/dl (PTH and Vitamin D are low normal and calcium is normal). These suggest that I don't have hyperparathyroidism, and so my doctor hasn't continued investigating.

I also had an episode - the first so far - of getting extremely dehydrated from urinating too much, vomiting, nausea, extreme thirst, constipation, and dizziness. It lasted 3 days and I couldn't go to work. It kind of sounds like an episode of extremely high calcium, but when I got my labs they only showed dehydration, but not enough to be put on fluids at the hospital. I did go to the urgent care when I was able to move, so it's possible that I was in a better state.

I do remember having a 24 hour urine test which showed high calcium and phosphorus in the urine, and I had a few blood tests over the many years that have showed high calcium in the blood at various points.

I'm wondering if anyone has any suggestions of what to do next, or any other supplements I can try that would be helpful. The boron is extremely helpful. Taking calcium or Vitamin D increases urination and makes the dehydration much worse.

Thank you.

2

Hello Aharp:

My name is Shelly and I am a Nurse in the USA.  I also have Hashimoto's thyroid disease.

Your blood work looks okay. Vit D should be between 30-100 and you are at 36 so that is okay and the calcium is to be between 8.6 to 10.3 and you are at 9.3.

Your symptoms seem to fit well with Addison's Disease which can cause bone pain, and gastro-intestinal problems, and it can cause dizziness and fluid loss. It comes from too low a cortisol level in the adrenal glands.

The 2nd condition is Diabetes. It causes, increased thirst, excessive urination, dizziness, headaches, tiredness.  This is from too much glucose in the blood, not enough insulin in the body.

Please see an Endocrinologist as it is a speciality area. They can run blood work for both conditions.

Keep me posted on how you do.

Shelly

3

Hi shelly, I wonder if you can help me. After seeing my Endrcinologist recently,he said I had Mild Hyperthyroidism,my blood results are at the bottom of this post if you can read them,I am also from the UK.

The reason I'm asking you is because I suffer chronic Stomack problems daily,to the stage where the pain is becoming unbearable.

i also do not understand the thyroid at all,it's so complicated .

4

Hi Shelly, thank you so much for your advice. I really appreciate it.

I am going to schedule some time with an endrocinogist sometime this month, and I'll be sure to ask about Addison's Disease. I looked up Addison's Disease after your message, and it's interesting that the "Addison's crisis" sounds a lot like that episode I had. 

I do think that I've been tested for diabetes and my blood sugar always seems to be in the normal range - the most recent A1C measurement showed 5.1.

I have had a few blood tests that show slightly high calcium (I am out of town at the moment so I don't have the numbers in front of me.). Do you think that that could indicate anything?

Allison

5

Hello Aharp:

I also feel from what you said you fit Addison's Disease more.  A1C of 5.1 is awesome!  Under 7.0 is the guideline.

Addison's is a cortisol problem (too low) and the adrenal gland makes that.  The adrenal gland sits on top of each  kidney. It causes all kinds of pain, esp. bone pain, back problems etc...It is also know for Gastro-intestinal problems. The late USA Pres. John F. Kennedy had it. It can be treated. Also when you see the Endocrinologist have him do a 24 hour urine, blood cortisol levels also, and calcium levels. Mineral panel check.

Your urine should only have minor "trace" levels of cortisol and calcium, and other things like sugar, urea, protein, creatinine, etc...if you are having too much it will show in the 24 hour urine.

Many people with thyroid disease can also have an adrenal problem. Sometimes it can be from a growth on the adrenal gland or the gland has changes in it do to the disease. Sometimes it can be a family trait.

They can do an ultrasound of the parathyroid gland as it sits on the corners of the thyroid  gland. The Parathyroid makes calcium and it can also change from a growth or undiagnosed thyroid disease.  So ask for an Ultrasound as they can see if it is enlarged, measure size, etc...

Keep me posted on how it goes,

Shelly

6

Hello Norma:

I was able to read your results. I will explain as follows:

TSH is 0.86 and normal range is 0.45 to 4.50, so since it is at the low end of the scale they call it Hyper (too much hormone),  when it is on that side of the scale. If it was 5.0 you would be HYPO or too little hormone!  They are opposite of each other.

It says as a note under your TSH if you are taking T4?  If you were on T4 name is Thyroxine 4 a hormone made by the thyroid. So if you were taking T4 it would be too much.

Now we have thyroid glands that sit on top of our trachea (Windpipe) and it makes a total of 4 hormones. For our conversation we will focus on T3 Liothyronine and T4 Thyroxine.

A thyroid produces the hormones and you normally do not know or feel anything. It also works with a gland in our brains called the Pituitary. The Pit. Gland says to the thyroid make more T4 and it does, except for some reason it can make too much.  Our bodies have to be just right not too much or too little. So if you have too much (HYPER) you will see symptoms like: feeling HOT, feeling anxious,  losing weight fast, sweating, insomnia, loose bowels and even Irritable bowels sydrome, anxiety, thyroid eye or bulging eyes, headches, muscle aches. There are more but these are common.

It can be hard to digest food well as the thyroid is making the metabolism run too fast. A normal thyroid take T4 and converts it into T3 which is the useable hormone in our bodies. When it makes too much you can lose weight so fast and if your bowels and tummy are under constant movement, it makes it go fast through you almost like you have food poisioning.  Some people have it very bad and need meds for the tummy.

There are 4 smaller glands on top of the thyroid and they are called the parathyroid glands. They make calcium.  They regulate the level in the body, your calcium is 2.36 normal should be 8.6 to 10.3 and you are low in that.

Low calcium causes muscle pains and problems in the body. It can be replaced by taking calcium tablets.

You need to slow down the thyroid, and they have a medication called Carbimazole and you should see an Endocrinologist who knows the thyroid gland.  It may be mild on paper but it can make you feel bad so you need to see the doctor and also see a gastro-intestinal doctor who could exam you and the give you a med for it. So please talk with your GP and ask for a referal to the above doctors.

Any more questions just ask,

Shelly

7

Hi again, Shelly,

Thank you so much for your replies. I ended up going back through my labs, and I found two that show some abnormal results for cortisol, but at the time I remember I was told it was all normal:

10/13 - 

- Cortisol 0 min - 6.3 ug/dl (low)

- Cortisol 30 min - 19.5 ug/dl (low)

- Cortisol 60 min - 28.2 ug/dl

1/16 - 

- Cortisol 0 min - 8.7 ug/dl (low)

- Cortisol 30 min - 23.3 ug/dl (low)

- Cortisol 60 min - 27.8 ug/dl

I also looked back through some labs and found another report for PTH which was also in the 20s, which like you said might indicate that the parathyroid is not the issue...

I have taken corticosteroids before (many times) for urgent inflammatory conditions over the years and it does not seem to "cure" my illness, so I'm not sure if that is counterindicative of Addison's.

If you have any thoughts on these cortisol numbers, please let me know. 

Thank you!

8

I also had a 24 hour urine test from a while ago (2010) that showed some abnormal results:

Hypercalciuria - 360 (normal is < 200)

Borderline hyperoxaluria - 45 (normal is 20 - 40)

High urine pH - 6.7 (normal is 5.8 - 6.2)

Moderate CaOx stone risk - 8.86 (normal is 6 - 10)

Extreme CaP stone risk - 4.78 (normal is 0.5 - 2)

Creatinine 24 hour high - 28.2 (normal female is 15 - 20)

9

Hello Aharp:

I do have some extra thoughts on your levels above.  I assume these are timed blood draws? 

Normal blood cortisol levels are 2.3 to 19.4 and should not be lower than this range. Usually a morning cortisol level may be the highest and later ones with-in normal ranges.  Was this done with a Dexamethasone tablet test?

Steriods- such as Prednisone can cause a problem with your cortisol levels as they reduce inflammation well, they also shut off your own body for a time.  In some cases, it can bother the adrenal glands and if you are on them more than 7 days, it can take a while for the adrenal gland to work as it should. Longterm use of steriods can also cause a brittle bone disease to happen. It can not be reversed. Please avoid steriods unless it is for Asthma or a matter of life & death.  they do harmful things when taken long term.

Each of your blood draws looks like you are too low and then goes high, so it does not seem stable to me.

I think you show symptoms of Addison's Disease and since many of the cortisol readings are low, this should be investigated by an Endocrinologist.

Regards,

Shelly

10

Hello Aharp:

This is not good. Have you had a kidney stone?  Some people do make high calcium and have a tendency to get stones.  They are extremely painful.

In any event you need to have an exam and even an MRI or CAT scan done to image the kidneys and adrenal glands.

I still feel you fit a lot with Addison's Disease.  Your levels should be updated on a 24 hour urine since this was 2010.

Regards,

Shelly

11

Oh Shelly,thank you so much for all of that.  I won't pretend I understand it all,but it has taught me a bit more.

I emailed my Endocrinologist secretary before Christmas ,because I thought there maybe a typing error in hyperparathyroidism /hyPOparathyroidism and she said she would check with the Endo,but she never got back to me,so I emailed her again this morning,and she replied with it was a typing error,and I have mild hyPOparathyroidism,can you believe that.  So I assume that changes a few things or probably makes more sense to you.

I am at the moment on 100mg of Thyroxide,now I don't know if that's right or not?   I have also asked to see my first Endocrinologist who first found out I had an Underactive thyroid,and that was there fault for giving me Amidrone after a heart attack.  Nearly all the health issues I have are due to bad care.

But the thyroid being a main organ,it has to work right,and I suffer severely with Stomack pain daily,and I know it could have somthing to do with my thyroid,but God is it difficult to understand,which if doctors done there job I wouldn't have to.    That just leaves me with sorry for the rant,and if you could advise me on what I need to do now that I've found out it is hyPOparathyroidism I would be eternally grateful. Thank you so much.

12

Hello Norma:

Okay that makes sense to me, Hypoparathyroidism, is a mouthful to say!  I saw your calcium is low right away. You should have the doctor advise you but you need replacement calcium.

As I said before, we must be "Just Right" not too low or too high. Go to a phramacy or chemist shop and ask for calcium tablets as they are sold over the counter. You may only need one tablet a day. It comes in different doses or you can buy a very good multivitamin that contains calcium and take one each day.

You need to get up to 8.6 and you are at 2.3 and it may take a month to get it to come back.  You can see if your doctor recommends a replacement calcium tablets also.

I would say that you may want to take 25% less of the Thyroxide as your TSH is 0.86 and it would be better at 1.0 -3.5 or so.  You would feel better. Of course you may and should consult your doctor for that, but I recommed that.

Ah doctors, LOL,  are too busy and hardly have 10 mins per patient.  I have no problems helping and explaining so please ask me, if I am getting through to you.

The thyroid is a very important Gland and it does a lot of things in our body, it regulates our periods, it makes us have energy, it regulates our metabolism, it helps with our weight, it helps with our body temp's and our heart rate.  We only have 1 thyroid gland and no back up gland so we need to stay well and find the right dose of meds if needed.

Any questions, just ask.

XO Shelly

13

We use different calcium units in the rest of the world. 2.3 is 9.2 US. Multiply by four to convert. No one alive has Ca of 2.3 in US units.

14

Firstly I'd like to say thank you Shelly,sorry it's took me so long to reply,but I've been so busy.

Now I notice the post below talking about different countries use different Calsium levels,so firstly I think I did tell you I come from the UK.

And secondly I can't really understand what that person is talking about.

But I for one am sincere grateful for your help,and if in the future I need a question answered,be sure I'll be back.  Thanks.

15

Hi ed,I am from the UK so could you be a bit more precise in your post.?

16

Sure, if your calcium is 2.3 and your from the UK it's in the normal range. Our range runs from about 2.2 - 2.6. In the US the range is about 8.8 - 10.4.

We use mmol/l units the US use mg/dl. To convert UK units to US multiply by 4. Thus your calcium of 2.3 is 9.2 in US units. So no need to get it up. It's already OK.

17

Hello Ed:

Oh thanks for that I in the USA and am using our USA scale. I wrote this down now. Will keep that handy.

Shelly

18

Hello Norma:

As I am in the USA, I did not realise that your using a different scale and way of determing your calcium.  Ed is correct your calcium would be 9.2 in my country. That is okay!

We use different measurements ways.  Most of our ways are similar and this way doing the calcium is different.  I was unaware of the testing methood so in my country your calcium would be measured in mg's. 

I thought it looked strange at 2.3.

Anyway, you are okay in Calcium, and let's keep it that way, LOL. Keep taking your medication as directed  or you can ask the doctor about reducing the thyroxide by a small amount so your TSH may come up.

Regards,

Shelly

19

Thank you all the same shelly.

20

Right ed,Lets start again, your saying if your Calsium is between 2.2-2.6 that's normal. So why is my Endocrinologist telling me I have mild hyPOparathyroidism . I'll put my latest blood results on if I can and I would sincerely appreciate your opinion .