So I've been on NDT since July 18th started on half a grain then built up to one and a quarter grains, I started with some symptoms around 8th Sep which consisted of a bad back pain on right side with urinating way more and thirst especially at night, I also started sweating [ something I've not done since coming of levo , [ only one was when I tried one and a half grains I felt a bit hot with a red face but that went when I went back down to one and a quarter grains I think I went to fast.
So these symptoms continued getting worse, with awful tiredness, just struggling to get up in the morning, I was due to have thyroid bloods done on Sep 12th, I've posted what happened...nurse did parathyroid instead of thyroid 🤦♀️ although this was annoying it did show my parathyroid was over with calcium at mid range ( comments on blood printout...clinical significance in over range parathyroid with normal calcium ????)
I have been diagnosed with primary hyperparathyroidism, im feeling awful atm, this is a real kick in the teeth as I've been doing so well on ndt , I finally had my thyroid bloods done on Sep 20th which show my T3 is now in range , my TSH as come down from 45.66 to 18.3 my T4 is still low , speaking to the roseway clinician she now suggests going to one and a half grains until January next year where I should have my bloods done again.
My surgery as finally contacted me this week about a phone call with a gp..( I have no doubt this appointment will be with a gp who as no idea of my health issues, especially primary hyperparathyroidism 🤦♀️)
I'm terrified they will blame the ndt on my symptoms and advise me to discontinue it , and go back on levo...totally missing the point, I have a note book with questions to ask but I just know I will be gaslit by the ndt😔
So sorry for the long post but im totally lost and really dont know how to handle this appointment on 22nd oct..😢❤️
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birkie
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Do you have the results and ranges of your Sept 20th thyroid blood tests?
My advice would be to ask your Roseway prescriber (by email, so you have it in writing, the support on info@ are helpful) to explain that your symptoms are unlikely to be NDT and this is 'well managed and supervised' by them. She can also write to your GP to explain what has been prescribed privately.
Did the symptoms you had on the 1 and half grain in mid Sept come back when you tried 1 and half grain more recently or has it been OK?
Sorry I can't help on the parathyroid side, but good that they picked that up. Will they refer you to an endo or ENT rather than a GP?🌱
Unfortunately for some reason I couldn't reply to posts🤷♀️ it appears to be working today,
My Bloods done on Sep 20th
TSH...18.3...ranges....0.30..4.50]
T3...4.3.........ranges...3.10..6.80]
T4...8.6........ranges....11.00..22.00]
Started on ndt on July 18th half a grain increasing to one and a quarter grains.... the clinician at roseway said to try one and a quarter for 2 wks [ now got one grain capsules] had 0.5 grains before] if I feel OK try adding on until I get to 2 grains.
Gp calling tomorrow, although I have no idea if this will be the gp who I saw about being on ndt private prescription or just some random gp🙄 but from my last bloods done Sep 12th my levels have improved especially T3 and TSH but I can imagine the knee jerk reaction the gp will have when I inform them I'm on ndt, all symptoms which I know are linked to primary hyperparathyroidism will be blamed on ndt😡
Perhaps you could blame your problems on probable key vitamins ferritin, folate, B12 and Vit D not being optimal, and ask them to check these to see if they are low. You could maybe say that unless your zinc and copper levels are balanced this will cause you problems with your thyroid. Can they check your levels for you? Point out how important selenium is to conversion of T4 to T3, but that you have no idea where your selenium levels are. Can they help you by checking all of these for you? Plus what Regenallotment suggested.
To attempt to stop them blaming your symptoms on NDT, these are reasonable suggestions of what could be to blame for your symptoms.
"It is common for patients with hyperparathyroidism (parathyroid disease) to have calcium levels that are high one time it is checked, and normal the next time it is checked. ALL patients with hyperparathyroidism will have calcium levels that change from day to day, week to week, month to month. Most patients with hyperparathyroidism have calcium levels that fluctuate from high to slightly high, to high-normal."
"Diagnosing Hyperparathyroidism is easy, but many doctors get confused. Blood calcium levels and parathyroid hormone levels will make the diagnosis. If you have high calcium, you almost certainly have a parathyroid tumor. Read this page and then get the CalciumPro app. It is much better at telling you if you have a parathyroid problem than your doctor is. Buy in Apple Store. Buy in Android Store"
The app is free and straightforward to use; you will need your PTH and Calcium levels and ranges and useful the also have vitamin D level and range.
There is a ton of information on Dr. Norman's site. You should also have a repeated PTH and calcium test – a serious diagnosis shouldn't be made with just one lab result without repeating it or having other confirming information.
Yes I've been diagnosed as jumping between normocalcemia and primary as my calcium levels fluctuate between over range and top end, now my specialist is trying to find the gremlin by scans unfortunately nothing as showed up, but I've had full thyroidectomy which I was informed is harder to operate on because of further damage to the vocal cords, personally I'd take the chance 👍
But it seems the powers that be would rather concentrate on normal calcium when it bounces back in by saying..." ho your calcium as gone back to normal, we'll check you in 6 months" 🤦♀️ these specialists are nuts not to know both calcium and parathyroid hormone can bounce in and out of range...I'm blue in the face trying to convey this message to them 😡😡😡
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