Not been here for a while as I have been investigating possible Hyperparathyroidism - still ongoing, it's a long road! Also had to deal with a gallbladder removal too...but now resolved 🤞
I'm having private bloods to check for raised Calcium (for HPT), which also test my thyroid. As both problems cause similar symptoms, I'm trying to pick my way through which (if not both) are causing them...fatigue, aches and pains and brain fog etc.
Been on Levo for about 8 years now, and other than reducing my migraines, I've never really seen much improvement. My latest test results are indicating to me that I may need an increased dose or T3, which i've already been told by an Endo which locally they will not prescribe.
TSH: 2.04 mU/l (Range 0.27 - 4.2) 45.04%
FT4: 16.7 pmol/l (Range 12 - 22) 47.00%
FT3: 4.3 pmol/l (Range 3.1 - 6.8) 32.43%
Are my thoughts correct? Any help would be much appreciated.
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Boatin
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Thanks for this. Spent most of last year and this, learning lots. Had scans, blood tests and awaiting results of an NHS endo blood test to finally decide what to do. 👍 Both Calcium and PTH high in range, whereas they should be opposite.
I had a parathyroidectomy in 2018 and I had to insist I went to a specialist. He was angry that the GP had not understood the condition. Raised calcium and parathyroid hormone is a definitive diagnosis and you need an operation to take the parathyroid out. We have 4 so losing one is not a problem. Very routine op but people usually wait for a long time meanwhile you feel so bad. Don't take bit D because that makes it worse. I hope you get the care you need.
I know frustrating isn't it. To be fair my GP has listened to me after I suggested a raised Calcium level from a private blood test ( i was fed up of telling the numerous GP's I felt awful) could be HPT.
She requested bloods and it came back with the same Calcium result (in range but at the very top end) plus the same for the PTH - should be a see-saw effect not both high.
Have had a private telephone consultation with a leading specialist in Oxford, who is 99% sure that i have it. Since then I've had a few more fluctuating results and have just seen a NHS Endo who didn't seem at all interested, but has again arranged bloods.
If these come back borderline i know the NHS will dismiss me - so it will be back to the private route!
In-between time I now need to get my B12 sorted, as I'm sure that is making me feel lousy too 😵😊
Here's another link with some excellent parathyroid information that I don't think was posted.parathyroid.com/patient
I went there in 2014 to the Norman Parathyroid Center in Tampa, Florida where I was diagnosed with Primary Hyperparathyroidism having two parathyroid adenomas removed. My symptoms before surgery included extreme fatigue, brain fog, and elevated blood pressure from abnormal calcium. I couldn't believe how my life had returned back to normal after having the surgery. I also have Hashimoto's and am taking 100 micrograms of Synthroid daily. I hope you get some answers feel better soon
My history ...in 2004 got my first flimsy diagnosis of primary hyperparathyroidism this was found on calcium bloods being high [ hypercalcemia] they then performed a parathyroid, calcium and vit D which showed raised pth , cal and deficient vit D, I was told by my gp I had primary hyperparathyroidism 🤷♀️ had no idea at the time what this condition was🤦♀️.
I then had 24hr urine test along with calcium and pth which showed high calcium out put in urine ,again confirmed primary hyperparathyroidism , but I was put on watch and wait which at the time I thought was what happened [ how stupid was i] I went on to develop kidney stones, high calcium , ostiopeania calcification in joints [ which I was never told about 😡 found them in my medical records in 2020, 2 of which were 2.89..2.75 not one gp suggested a pth test along side the high calcium .
I just suffered year after year with my gp blaming chronic fatigue and fibromyalgia
I became really ill in 2014 and were sent to an endo , gp told me everything was normal when in actual fact when I read the report in 2020 in my records it said.." this lady has short suppressed TSH with episodes of thyroiditis, subclinical hyperthyroidism is a possibility, please do regular thyroid blood tests to check her thyroid function...gp never did😡.
2018 I was eventually diagnosed with hyperthyroidism [ graves thyrotoxicosis] went on to have full thyroidectomy in 2019.
Then in 2020 because I was now having regular blood tests for thyroid hormone they noticed my calcium was over range, again I got the diagnosis of primary hyperparathyroidism 😡 and again the good old nhs just don't want or don't know how to treat this condition.
All I can tell you is the nhs like to have a target meaning the adenoma shows up on a scan so it's easy for the surgeon to go right to the offending gland, but if like me no adenoma shows up and they don't deem your bloods high enough or you don't have kidney stones or osteoporosis it's very hard to get the cure which is the removal of the gremlin, I unfortunately had to go private to get the nhs to admit I did indeed had this condition because they were just fobbing me off, eventhough I have 2 endocrinologists reports saying I have this condition.
Unfortunately I can't afford to have the parathyroidectomy privately, so I'm still fighting the nhs
These endocrinologists know very little about thyroid conditions let alone parathyroid conditions, I only hope you are a straight forward case and they do the correct thing and get you sorted ASAP...Good luck☘️
That is a horror story - so sorry for you, you need to go through PALs and make a complaint if all this was on your records. You're quite right, unless blindingly obvious the NHS don't seem to want to action anything - even if further down the line it will cost more.
Just like thyroid levels, they don't always reflect the symptoms - someone high in range can feel much worse than someone over range.
I've paid for an US scan as I couldn't get one through the NHS, but like you and 90% of folk they are difficult to spot. In fairness the GP did organise Bone scan and kidney scan - i think because she could put it against other investigations. Bone scan came back with some small changes, but kidney scan clear of stones. Although I do wonder if my recent gallbladder surgery is related.
I'll await my recent NHS blood tests and take it from there, but I suspect the private route will be the only option for now.
I had bone and kidney scan which showed ostiopeania and I'd passed kidney stones as I had dilation in my right kidney tube and bad scaring indicative of passing stones ,I also have a gallstone 🙈 so perhaps there is a link with phpt👍
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