I'm posting my blood results here so as to ask advice on what to say at my endo app in carslile on the 2nd September 2020..for a parathyroid scan/endo app in Newcastle.
Creatinine.. 90..umol/L..(range..49-90) last creatinine has been higher at 92..umol/L..and... 98...
Total calcium.. 2.69..mmol/L..range.. 2.10..2.60..mmol/L
Albumin.. 53..g/L..range.. 35..50..g/L
GRF..61..mL/min/1.73m2...range.. 90..120..
I recived my medical records from my surgery their are a lot of thyroid related stuff in them going back to 2004 one letter from my gp dated 12 July 2004 quite clearly says I had had a recent blood panel test which showed a raised calcium level and a raised PTH level.. Well I'm sure if you have both raised levels their is no doubt you have hyperparathyroidism!! But looking back my endo took more bloods and seems to have dismissed this saying my bloods are back to normal no further action!! In that Intrim I was still ill so was sent to another endo who after several blood tests diagnosed me with thyroiditis this is the first time I've heard this at no point did my old gp or my current one tell me this in 2014 onwards till my diagnosis of hyperthyroidism in 2018...i have had several abnormal calcium levels in my records with no information to me.. at this time I never asked for results and just went with what the gp said!!
I also have a lot of,,,!!! These beside my creatinine levels and my GFR.. Their on nearly every page of blood results.. In 2015 I had a TSH level of 0.86..but my endo said my T3 was normal their is no T3 blood result just the TSH on the page..
Because I had a raised FSH they just said all my symptoms were menupausal😠 I told my current gp that I felt my symptoms were not down to the menupause but he dismissed this for a long time ,yes I was sent to endos who agreed with my gp on the menupause eventho I had raised calcium a TSH.. At 0.86.. no further action. Looking in my records I have been intermittently going back and forth to endos from 2004 until I was sent again in sep 2018 after I became very ill my symptoms from 2004 onwards just progressively got worse until I was eventually diagnosed with hyperthyroidism turned out to be graves disease To which I had to have a full thyroidectomy in 2019..im now on T3 only after struggling with T4 for over 7 months turns out I'm lactose intolerant so moved to teva T3 lactose free. Iv never felt 100% well even after thyroidectomy. My current endo wanted me to increase my T3 to 40mg front 20 mg.. but she never give details and did not up my prescription I've since discovered she is happy with my current bloods so she is not upping the teva... Although I did on my own in increments of 5mg..im now running out of the T3.. Im now going through all the horrors with my parathyroid glands they have gone overactive AGAIN!!! And I have raised calcium although endo says this is borderline... This is rubbish it clearly states in parathyroid illnesses that it is absolutely NOT required to have both PTH and calcium to be high to diagnose hyperparathyroidism in some 20% of patients the calcium will be high and the parathyroid hormone will be normal or the PTH will be high with a normal calcium level.. This is still hyperparathyroidism.. My endo is now wanting me to do a 2mls urine test as my 24 hour test as not done correctly by the labs they failed to differentiate between the conditions primary hyperparathyroidism and familial hypocalciuric hypercalcemia.. What a mess!!!! 😠😠😠
Many thanks to all who read this and who reply back ❤️❤️❤️
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birkie
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First most ESSENTIAL thing is to make sure you don’t run out of T3
Chase up getting new prescription URGENTLY
How much T3 are you currently taking
How many weeks at this dose before you did the test?
Was test done as early as possible in morning and before eating or drinking anything other than water .
If/when also on T3 make sure to take last half or third of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Hi slowdragon ♥️ yes did all the stuff for the blood test fasted just water did not take T3 left 24 hours between dose. She will not up the meds.. I started on 20mg splitting the dose by 10 one in the morning one at night.. I myself added 5gm incriments I'm now on 30gm..splitting the dose.. 2.. 5mg over 8 wks.. Although I still don't feel well at all but coupled with the parathyroid glands going overactive to I'm not surprised... Could you comment on my post as my records state I had hyperparathiyroidism and then thyroiditis... How could my gp miss diagnosis me as having menupause symptoms when it was hyperthyroidism graves??? I'm mad as hell😠😠😠
Hi the PTH ranges are.. 1.6...6.9..pmol/L.....mine is 9.5...rising from 8.1...im having all the symptoms I did in 2004...i certainly don't want to go through the hell I did in 2004..with this condition.. I'm trying to order the T3 on my prescription line in the hope the receptionist doesn't notice my last prescription date.. If this doesn't work I will contact the endo.. 😵😵😵
Not on vitamin D as endo says vitamin D is within range... She also said seeing as I had raised calcium levels and pth she wants me to have the parathyroid scan... I also have calcification of wrists, knees, shoulder, have had several bouts of passing kidney stones and grit the last being in 2019 in july/Aug.. I've had oxalate crystals in my urine. my urine tests dates..( 6th Nov 2019)
GRF.. 57 mL/min/1.73 m2 range.. 90. 120
Creatinine 95 umol/L range 49..90
(12th Nov 2019)
Creatinine 92 umol/L range.. 49..90
GFR..60 mL/min/1.73 m2 rang 90..120.
(4th Feb 2020)
GFR..57 mL/min/1.73 m2.. Range 90..120
Creatinine 95 umol/L range 49..90
(June 26th 2020)
GFR 59 mL/min/1.73 m2 rang 90.120
Creatinine 92 umol/L range.. 49..90
(6th Aug 2020)
GFR..61 mL/min/1.73m2..range..90..120
Creatinine 90 umol/L range 49..90..
Long term hyperparathiyroidism can lead to kidney stones and osteoporosis which I have!! I also have calcification in my arterys. My vitamin D was 70..nmo1/L.. 250H vit D...
I got my medical records from the hospital some came through on my tablet.. Like x rays, operations ect.. My uptake scan for my thyroid was on I had 2 hot nodules quite large!! I I had my radioactive parathyroid scan on Tuesday this week.. And a familial hypocalciuric hypercalcemia.. (FHH) just waiting on results.. I spoke to a parathyroid specialist from Newcastle yesterday he looked through my records and has noted several incidents of raised calcium one off the scale before my thyroidectomy!! He asked what had been done about that? I said nothing he is now taking over from my endo and wants me to come off T3.. To be quite honest slowdragon I'm certainty not recovering at all so any input from him will be appreciated.. He wants me to try T4 lactose free because my T4 is very low(I know as does he that being on T3 only you do have a low T4) also my T3 is not very good I explained that my existing endo does not want to increase the dose.. But to be honest I've noticed when I take T3 my hyper symptoms become worse.. I came off T3 for 2 days and my hyper symptoms diminished I went back on and went hyper again! Only on 30mg splitting the dose,, I'm also having a bone density scan and a full kidney examination scan blood work up.. He also said T3 leaves the body fast said when you take it you get the high then the come down.. 🤔 But I said well that's why you split the dose I said but he still insists it's not good on its own and didn't really agree with a combination either!! Because I feel so unwell I'm willing to give this endo a go... One good thing he listened to me.. ♥️
Sounds like he’s anti T3 generally.....Many of us find addition of T3 calming and relaxing....the absolute reverse of what he’s describing. Eg dose before bedtime improves sleep
you may need both levothyroxine and small doses of T3 ...but see how you go
You would need to change over very very cautiously
But there are plenty of people who can only tolerate T3 and no Levothyroxine at all
Obviously lactose free is going to be essential regardless of which mix you end up on
A lot of us have similar stories I'm afraid I was told I was suffering from the menopause. I then went on to have a couple of uterus biopsies and a cervix biopsy because of irregular bleeding. I was 48 at the time and I actually went through the menopause at 55 which I actually didn't have many symptoms from. I had horrible symptoms with untreated Graves' which included sweating, hair loss, insomnia, paranoia, blurred vision, one of my eyes started to bulge, shaking, raised blood pressure and heart rate. One of the GP's showed me a graph of my TSH and it was going down for several years before I became really ill but because it was within NHS guidelines nothing was done about it.
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