Since Christmas I had Symptoms like headache, lack of concentration , muscle and bone pain etc. worsen and had today an Endo appointment. Since about 5 years I suspect having primary hyperparathyroidism since my HPT and Calcium are consistently both high or high normal. My bones have deteriorated since then from -1,5 to now -2,4, border to osteoporosis. My endocrinologist says this comes from taking T3. I had suffered very much years after a thyroidectomy in 1996 and was helped by a private doctor in 2017 who titrated me up to Novothyral (125 mcg)and Thybon 20 mcg). My blood pressure, pulse, temperature etc were always normal, rather low, and I slowly had a Life again. My last readings were in Dec.22:
Calcium 10.2 ( 8.1-10.4 mg/dl)
PTH. 74 (16-65 mg/dl)
25-OH-D. 190. (75-250nmol/l)
FT3. 4.6. (1.9-5.1. Pg/ml)
FT4. 1.5. (0.9-1.7. ng/dl)
TSH. < 0.01. ( 0.4-4.0 mlU/l)
So my question is if anybody has experience whether it is possible to have that high PTH from T3? Thank you so much.
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renawaltdr
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The results were from the same day, and have similarly been for the last few years. I used the calcium pro app with results from the last 5 years and it says pHPT very likely.
I had been under medicated for many years, but the main decrease in bone density happened between 2020 and now, when I was taking the t3. Novothyral 100 contains 100 mcg T4 and 25 mcg T3, so I have 30+ 20 mcg T3 altogether and 125 mcg T4. Several times I tried to reduce slowly but symptoms came back…
A ultrasound yesterday showed nothing , so perhaps a new sestamibi scan will be done
With your high PTH your calcium should be lower so it looks likely there is a parathyroid problem. You need scans done to try and locate the overactive gland, but as I say over and over this can be incredibly difficult to diagnose especially when Drs aren’t experienced with PTH disease.
There is much old and mistaken information still circulating regarding thyroid hormones and bone health. The truth is many members (including myself) have poor BMD due to years of being left with inadequate levels of thyroid hormone, particular T3.
Too much or too little T3 will negatively effect bone health but the right amount is essential in driving the osteoblasts (creation and mineralization of bone tissue) and osteoclasts (resorption, breaking down bone tissue to release minerals from bone to blood, etc ) which continually remodel our bones. Oestrogen, progesterone, calcium, Vit D and weight bearing exercises are other important components for healthy bones.
Your T3 dose isn’t high and your labs indicate a healthy amount of ‘free’. It’s awful having doctors/specialists who don’t know what they are doing.
I am not hugely well versed on hyperparathyroidism and others have offered good info already. However, I will say I thought the most common reason for elevated PTH was low Vit D that decreased calcium absorption. PTH then tried raising calcium that then came out of the bones, hence people with low Vit D have oesteoporosis, rickets, etc. Your 25 OH Vit D results look ok and it is normal to test this form but this is the inactive form of Vit D and it is possible to have deficiency with these levels of 25 OH Vit D.
can you find a Dr who specialises in parathyroid ? A PTH gland is very often difficult to see on a scan. You need an expert to do tests and look at scans.
Your body will be trying to get rid of the excess calcium and will remove it from your bones via your kidneys. That is why you often get kidney stones and poor kidney function.
hello meme, thank you. Finding a specialist in PTH in Germany seems to be the problem. Some doctors said it might be pPTH but so far no one is willing to take more action…
we saw an Endocrinologist in U.K. who was will to give us the diagnosis but only with some arm twisting!!! We took so much info with us, tests wanted/needed, symptoms, charts, blood test for several months etc. He had to agree😂. We then had some tests on the NHS but by then I had found an expert surgeon in Oxford and he agreed to operate with blood work only, as scans had not been very helpful. I suggest you join a FB page on PTH. You will find a lot of great help. That is how I found our wonderful Dr K.
Thank you very much. It is good to hear you found help and are happy with your surgeon! I already heard positive comments on Dr. K. in an UK PTH Group. As a last resort, I consider trying to get treatment there . I found no similar address so far in Germany but will continue searching. All this stresses my psychological capacity very much.
This is what my GP told me that the T3 was causing all my symptoms and I should come off it as my TSH was 0.05..😠 because I was just about sick of hearing it from the GP I did, but noticed that my calcium was over range twice (2.67..2.63) after I had my thyroid bloods done 14 weeks previous (GP never informed me of these calciums) I'm suffering with bad bone pain, insomnia, constant trips to the loo to wee, constant thirst, sweating,shaking, fatigue.
I asked the GP to send the calciums to the endo, I then had 2 blood tests PTH, calcium vit D ...PTH was 8.1 range (1.60/6.90) calcium was 2.54) PTH 9.5 calcium 2.56) no PTH was performed on the over range calciums and I then found out no actual vitamin D had been done they used an old vit d test from a year ago 😠 so not a good start! This was in 2020
And so my awful parathyroid journey began with the NHS...this is what they did from June 2020 until I'd had enough by 2022...they would test calcium/vit d missing out the pth, or do PTH missing out both vit D and calcium 🙄 also I found depending on which nurse took the blood the pth was not always done in a EDTA tube..I'd spoken to 2 endo by then and both said I had primary hyperparathyroidism when in fact it was normocalcaemic hyperparathyroidism ( normal top range calcium with an over range PTH.. although some of my later calciums were over range no PTH had been tested along side it😠.
All 3 must be tested in one draw alongside magnesium and phosphate, I was informed by one endo after one normal blood test I was now ok after saying I had primary hyperparathyroidism 🤣 Parathyroid problems don't act like that, in some cases the calcium can bounce around going bk in to range as can the pth,this does not mean you don't have a problem, this is where the NHS let patients down badly..and here is the kicker..I was diagnosed with this very condition in 2004 but the NHS endo did the same thing saying your ok now!! I've since gone on to develop kidney stones, ostiopein in total spine and thigh, lost 6 teeth , have calcified tendonitis, calcification in joints and heart all indicative of untreated primary hyperparathyroidism so I've probably had this condition since 2004😤.
At the end of my Tether in 2022 my son paid for a private appointment with a prominent parathyroid surgeon in Oxford, he looked over my last 4 bloods and confirmed I had normocalcaemic hyperparathyroidism,he performed a ultrasound scan and found a 6/7 mm nodule in my neck the very place I've been telling my GPS I have a painful throbbing sensation 😠 he as requested re bloods,a 24 hour calcium urine test and a pet chlorine scan at Liverpool..but again I'm fighting the NHS as for the past month my surgery have constantly told me no report as been sent from this parathyroid surgeon...when I know it as..has is secretary informed me she sent it on Nov 24th 2022
Hey presto I called in again on Thursday and they found it!!! Unfortunately I've been informed it's very unlikely I'd get these tests performed by the NHS as I'd gone private...I smell BS💩 so I'm fighting the system again and believe me the way I'm feeling it's the last thing I want everyday is a massive struggle, I take my T3 religiously but to be truthful I'm feeling no better, but I put that down to the parathyroid thing.. unfortunately the NHS endos don't know much about thyroid problems and no little to nothing about parathyroid problems so it's a flipping fight with them, I would say your T3 meds have nothing to do with your PTH levels mine was the same on T3 ,T4..your blood work clearly shows you have a parathyroid problem and it needs sorting but as I say the NHS endos are a bit useless when it comes to the parathyroid subject 🙄 I'm on a very good parathyroid site.. hyperparathyroiduk action 4 change they helped me get to the private parathyroid surgeon in Oxford, I hope this post helps you!! Sorry it's long but I have an arsenal of info on parathyroid problem with the help of the site👍👍👍
Thank you soooo much! You cannot overstimate how much i appreciate your comment. I am very sorry you had to suffer so much for so many years, and I gather you had not yet surgery. I wish you all the best!
The doctors here are very similar to the NHS. They do not know much about thyroid or parathyroid issues. After the advice if a prominent university endocrinologist in 2017 I stopped the T3 and only took 75 mcg T4 as advised an came to a suicidal state very soon! No way. I did not self medicate, Iowa’s titrated with T3/T4 by a private doctor who unfortunately died 18 months ago.
Meanwhile I am on the UK for change group as well and consider going to Oxford as well. I have a good old friend who would help me with the cost. But it would be helpful if course to have a scan where an adenoma shows. An ultrasound did not reveal anything, as did a sestamibi scan 2017. To have a new one, I should leave T4 for 14 days and T 3 for a week before. I did not do this because of previous experiences I am afraid I would not survive it, I have no thyroid. So sometimes I have the feeling of Being in a bag end…no way out… but then I have the last resort of going to Dr.K…,perhaps I can have a PET choline scan privately.
I have no thyroid either, full thyroidectomy in 2019, ..when I had my thyroid removed my surgeon put me on calcichews as they do because the operation can bruise the Para glands causing them to go dormant for a short time and then you can end up hypoparathyroid where you produce less calcium, in my case I'd only taken about 5 tablets and had my bloods done for thyroid,the surgeon rang me to say "don't take anymore calcichews" he never said why ,4 weeks later I was rushed into hospital passing a kidney stone again!!🤦
I also had scans on my para glands in 2020 which never showed up anything in my neck! As Mr k said.."the parathyroid glands are the size of a grain of rice and even if they go overactive they really don't get that big" hence the pet scan which should show the little offender up😊.
Mines a bit complicated as Mr k says mine might be on a nerve..not good as no one would operate in those circumstances 😔 but it is a good thing for a surgeon to identify where the little gremlin is, so surgery would be better for yourself and the surgeon because he could go right to that place instead of digging around for it, and it's worse if you've already had surgery in that area (thyroidectomy) if you have the funds then go for it👍but waiting for the NHS to do anything about it you'll be here this time next year 😠 good luck in your journey 👍💓
thank you birkie. My thyroidectomy was in 1996, so they probably had no calcichew then. -But it is suspicious that they so suddenly removed it from you. -When will your PET Scan be? Hopefully not next year???
As I said my surgery are refusing to do all the tests Mr k as requested along with the pet scan, I called the receptionist out as she was the one who relayed this information to me,I don't know who told her it would be very unlikely I'd get these tests done through my surgery.🤷So I said in effect your refusing me the treatment requested by a parathyroid surgeon, "ho no because you went private to see a surgeon you should go private for the relivent requested tests"...yeah like I have a couple of thousand pounds for that to be done🤦🤦🤦🤦
this is really incredible. Even worse than in Germany, I guess. How much was the appointment? Surgery should be about 5000-6000 pounds, as far as my information goes. And the PET scan?
With Mr k it was £150 consultation and £315 for the ultrasound scan I was supposed to have bloods to but he said your last 4 show you have a parathyroid problem so I'm referring the bloods and urine,pet scan back to your surgery, why should you have to pay for it..👍 lovely man I couldn't fault him💓
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