The job of the parathyroid glands are to control calcium in the body. When an adenoma (benign growth) forms it causes the parathroid glands to misfire by releasing too much calcium into the body beause it can no longer judge the correct amount needed.
Noy only is it important to take enough calcium daily depending on age, it is even more im ortnant as the parathyroid is ridding the body of calcium and thi will cause bone density loss and problems with bones and teeth. Many people think that because they have calcium oxalate stones that they need to avois calcium intake when in fact they need to keep up with their intake, It is also not advised to take calcium in pill form as only 30% is absorbed into the bodyand it is healthier to get calcium from food and drinks, If you eother want a varity or are watching cholesterol or weight it does not have to be ingested through cows milk. Salmon, broccoli are just 2 examples of calcium rich food and there are many milk alternatives available. Due to not being allowed to eat soy or almonds I opted for oat milk which I find is a welcome change. Of course, yogurt and cheese are good calcium sources.
The ONLY way to “cure” hyperparathyroidism (over active parathyroid) is surgery. There is not other way to control this illness.
There are many different symptoms for hyperparathyroid issues, the most common being fatigue, brain fog, body aches and pains and weight gain.
Blood and 24 (48) hour urine tests 25 May 2022
Blood test results
Ideal Calcium 2.15 – 2.60 mmol/L My result 2.79
24hr Urine results
Ideal Calcium 2.50 – 7.50 mmol/L My results 14.43
Ideal Oxalate 40-340 umol/L My results 530
Blood test for PTH – parathyroid hormone
Ideal PTH 1.6 – 6.9 pmol/L My results 11.8
Urologist follow up 13 July 2022
This appointment went well and I asked questions about the low oxalate diet. I asked if it was correct to take enough calcium in and to drink calcium with higher oxalate foods. I was understanding the diet correctly but it was nice to have that confirmed.
Basically you need to restrict your oxalates to 100mg per day, or less depending on your doctors instructions. Any higher oxalate foods ie potatoes, then consume a glass of milk AT THE SAME TIME. It is important for it to be at the same time because the calcium helps flush the oxalates away and deter the oxalates from lurking in the kidney.
Bone Density Scan 25 August 2022
Due to the calcium loss due to what appears to be a parathyroid issue I asked for a bone density scan. My previous GP had not followed up with a scan after 5 years which is why I asked.
Unfortunately the results have worsened and gone from a high density with low risk of fracture to a medium densiry with a higher risk of fracture, Due to this I will be getting a scan in 1 year rather than the usual 5 as before
Renal Ultrasound 7 September 2022
The kidneys are normal in size. The right kidney measures 10.3 cm in length and the left kidney measures 11.1 cm.
There are benign left renal cortical cysts. The largest cyst is seen in the midpole of the left kidney measuring 3.4 x 1.9 cm. The right renal contour appears smooth.
There is suggestion of a small 0.3 cm stone in the lower pole of the
left kidney, no renal stone is seen on the right.
There is mild bilateral renal pelvic caliectasis but no significant hydronephrosis.
Urologist Appointment 21 September 2022
The urologist was pleased with the renal scan for the suggestion of a renal stone he explained to me that they write the worst case scenario and it could be nothing,
As my PTH was high it was at this visit that I was referred to an endocrinologist. Endocrinologists deal with hormones amongst other things.
I would have a visit in the new year.
Bloodwork 29 September 2022
This bloodwork was ordered by the endocrinologist to check parathyroid hormone levels (PTH) and Vitamin D.
Ideal PTH 1.6 – 6.9 pmol/L My result 15.2
Ideal Vitamin D 75 – 250 nmol/L My result 45.9
Ideal Calcium 2.15 – 2.60 mmol/L My result 2.70
It is very obvious that this is a parathyroid issue.
Endocrinologist 7 October 2022
This was a phone call to talk about what’s going on with high PTH (parathyroid hormone)
Due to a link between low Vitamin D and high PTH the endo decided to put me on Vitamin D 1000IU at 5 tablets per day to see if it made any changes.
This would be reviewed in 3 months. I was anxious that another 3 months would go by with no looking at the parathyroid, however the endo decided she should put me in touch with an ENT doctor (ear nose and throat).
ENT 17 October 2022
I was very impressed that it only took 10 days for an appointment to happen and the discussion was that I needed a $D scan because neither an ultrasound or CT scan had found anything.
It was explained to me that for the surgery they make a small incision in the neck and then sliced one side of the thyroid and flip it to the other side to access the parathyroid which lies behind the thyroid. Then when the adenomas (benign growths) are removed then the thyroid flap is stitched back.
Bloodwork 17 Jan 2023 Parathyroid
Ideal Parathyroid Hormone (PTH) 1.6 – 6.9 pmol/L My result 9.8
Ideal Vitamin D 75 – 250 My result 99.7
Ideal Calcium 2.15 – 2.60 mmol/L My result 2.76
Renal Ultrasound 17 January 2023
24 hr Urine Test 18/19 January 2023
Quantity 4.3 litres, so I am drinking enough during the day!
Ideal Calcium 2.50 – 7.50 mmol/L My result 11.44 (previously 14.43)
Oxalates were not tested this time because the main concern was the amount of calcium.
ENT 19 January 2023
This visit was not related (or I wonder if it is) to parathyroid but instead I have been getting a pain behind my left ear, sometimes in my ear, which leads to a severe headache on the left side. This is so bad I’m taking painkillers every day. She didn’t think it was anything to do with parathyroid but i have read ear pain can be a rare symptom.
She sent a request for a CT scan and the appointment is set for 22 April 2023
It was at this appointment that she (luckily) mentioned that my 4D scan was soon which was the first I’d heard about it. Apparently someone forgot to let me know! I would not have known had I not gone to her for something else.
I now had 8 days to prepare!
Endocrinologist 24 January 2023
First time seeing the Endo in person and she acknowleged that the vitamin D had brought down the PTH a little but not sufficently and that the high level of PTH was the cause of the kidney stones. It was confirmed that it was not due to diet and following a low oxalate diet would not make a difference. She wanted to see the reuslts of the 4D scan also.
4D Scan 27 January 2023
For this scan I had to fast for 8 hours but was allowed to drink clear liquids such as black tea or water. Water was encouragfed so that was normal for me.
The scan did not take very long, probably about 15 to 20 minutes. Part way through the scan they inject a dye to help diagnose any adenomas.
I read my results online and they did not find any adenomas. This will now need to be my decision (which I have already made) as to whether I want to proceed or not with exploratory surgery. I talked to the ENT last time I visited and she said it was a decision for me to make, It was easy to decide to go ahead with this because it is obviously a parathyroid problem as all the test results have confirmed and the main factor is this…….
THERE IS NO OTHER CURE.
On talking to the ENT she did mention that she has never opened anyone up and stitched them back without finding anything, so that makes me feel a bit better. The Facebook support group I’m part of has many people in the same situation who opt for exploratory surgery because nothing shows on the scan, even 4D, and they do have adenoma(s) that are then removed.
Urologist 1 February 2023
This was a follow up to the renal ultrasound and 24 hr urine test. He was not concened, at this stage, with the kidney stone and explained that they always report “worst case scaenario”. He also mentioned what I was wondering, about the stone in the left kidney that has “disappeared” and said they may have guessed. At this stage, with the Endo and ENT doctors dealing with parathyroid he was not concerned about a potential kidney stone. He wanted to wait and see how the parathyroid issue was being dealt with before doing anything. He will follow up another ultrasound in 3 months.
ENT 1 March 2023
This was a follow up for the 4D scan, which unfortunately did not find any adenomas. (benign tumour). It would now mean that I had a choice of whether or not to proceed with exploratory surgery. This was a no-brainer for me though because there is NO other cure. I was told that they start with left lower, then left upper, then right lower and right upper. It is also extremeley common for the adenomas to not show on scans. They can also attach to other places from which they are difficult or impossible to remove. I was hoping this would not be too daunting.
X-Ray Knee 25 March 2023
Since changing GP I asked for my knee to be looked at again. It is painful to walk any distance without a knee brace.
GP 30 March 2023
This was a follow up to the X-ray on my knee. The original injury was a meniscus tear, to which nothing had been done for over 5 years now. I was referred to a different hospital that was a 35 minute drive away as things appeared to move quicker there. At my local hospital it was a 2 year wait just for a consultation!
CT scan (head) 22 April 2023
This was to check out the severe pain behind my left ear that leads to a severe headache every day. The procedure doesn’t take very long.
The results came back that everything was normal, brain, ears etc. I did not have a follow up with the ENT about this because I was due parathyroid surgery within 2 weeks.
Parathyroid surgery 2 May 2023
Eviction Day had arrived! Luckily for me this was a cancellation, as it was presumed I would be operated on in June at the earliest. This is an exploratory surgery so I am going into this knowing it is a parathryoid adenoma from the test results but also hoping that it (or they) will be found. There are occasions when the parathyroid glands can be ectopic and not in the place they should be.
Surgery itself took about 90 minutes. You are put under general anaesthetic so feel a little woozy when you come to. I still think general anaesthetic is the best option for all surgeries, in my opinion, because I’m still contending with a numb foot from the spinal numbing i had from my hip surgery in 2019.
Coming round, I felt that I had to clear my throat, but understood that a person is intubated during this type of surgery and that a sore throat is normal. I was offered an iced lollipop which was heaven. I was taken to a short stay unit in the hospital that was a makeshift area within the rehabilitation area that I had gone to for physio after my hip replacement. Due to this fact there were no permanent hospital beds but instead we were kept on the stretcher beds we were on for recovery and wheeled into place. Each bed had a curtain between them. This set- up was OK for me at 5 feet 3 inches tall, but the man in the next bed at 6 feet 3 inches with a knee replacement was not so lucky. They had to bring him extra support for his leg to enable him not to have more knee pain than normal.
When the ENT doctor came to check up on me and talk to me I was told that they had found a bad gland (adenoma) and removed it. It had grown to the size of a fava bean. Considering the glands are normally the size of a grain of rice, that had been there a while. It had been the last one checked, so at least I can be assured that they were all checked and, so far, the other 3 are normal. I was told prior to surgery that the order they are checked in as to the most likely places are left lower, left upper, right lower, right upper. Yes, mine was right upper!
Hospital stay 2-3 May 2023
The stay in hospital was just overnight and I was woken at 6am for bloodwork to ensure I was OK to go home that morning. I was woken a couple of times during the night while they checked blood pressure and all I needed for pain was a couple of Tylenol for a headache. The nurse told me that my blood pressure was low for a few reasons. Firstly there is the fact that you have to fast overnight, including liquids, so your body is already becoming dehydrated. Then partly the drugs they give during surgery and of course, the time that surgery takes, dehydrates you even more. I did ask if that was why I was on a drip and the nurse said I was best to keep drinking lots of water and accepting cups of tea when they offered because the rate of fluid replenishment that the drip was doing was at the rate of it taking me 7 hours to drink one cup of water. My headache improved as my blood pressure improved.
I went home the morning after the overnight stay with a prescription for strong painkillers as a “just in case.” I only needed a couple of Tylenol Arthritis (slow releasing) for about 3 days. Also less and less each day.
I started to feel sore and bruised due too and I’m thinking it was from how they position you for surgery. Other than my throat, which was to be expected, I felt sore at the back of my head just behind each ear and also my collarbone felt as if someone heavy had sat on me. On researching this, it seems that a head clamp is used to enable this surgery to be performed. The pain was so minimal, or non existent after about 3 days that you could almost think “surgery, what surgery?”
I was told to take calcium tablets if I felt a little shaky or a couple of Tums. It’s all to do with the calcium levels correcting themselves. Often the over active gland, that has now been removed, causes the other glands to become lazy. Once the adenoma is removed the other glands have to “wake up” and may be a little sluggish at first. I was given a requisition for blood work to do in a few weeks.
Home care after Parathyroid Surgery
There are different ways to close up the wound after this type of surgery and I was told I had one stitch. The scar was between 2 to 3 inches long and was covered with steri-strips. This has to be kept dry until the stitches are out.
I asked how long it would be until I could drive and it is until you can turn your neck and are not on strong medications. I could probably have driven 3 days after returning home but I left it for 4. I then carried on my life as normal, other than not lifting for at least 2 weeks.
Of course, swimming was forbidden until the stitch was out and the scabs that had formed had completely gone. That ook about 3 weeks.
The stitch was removed a week later and the ENT doctor tried to remove as much sticky residue as possible with a medical form of “Goo Gone.” I was told I could use rubbing alcohol if need be.
Whilst there was only one stitch, trust me when I say that it must have been a running stitch because I felt it pull the length of the scar on removal. Not painful but not a pleasant feeling either.
Knee Consultation 10 May 2023
Renal Ultrasound 16 May 2023
Endocrinologist 24 May 2023
Urologist 30 May 2023
Bloodwork/ 24 Hour Urine Test 14 June 2023