Thanks for your replies to my previous post and also the advice that I should investigate hyperparathyroidism. I saw the endocrinologist today and apparently my July '23 results (which I hadn't been told, and certainly they'd never mentioned they'd do T3) were: TSH: 0.02 (0.27-4.2)
T4: 20.5 (12-22)
T3: 4.9 (3.1-6.8)
So I have some current T3 results at last and blood taken today. As I'm still on the same dose it will be interesting to see the results as they jump around a bit despite my consistency in taking them and with test conditions.
I don't know how those results look or whether it's still though that T3 may be too low but also in July I had these results:
Calcium: 2.68 (2.2-2.6)
Vitamin D: 84nmol/L
PTH: 5 (1.6-6.9)
B12: 352ng/L (180-900)
Serum folate: 12.5ug/L
I was taking multi B vitamins with biotin but she said that won't affect T4 results as it's free T4. I didn't understand that.
She indicated I am likely to have hyperparathyroidism. They may have been damaged during thyroid removal (40+ years ago) or since.
She also said depending on what the bloods and urine test (a 24hr one) and kidney scan show I may then need an ultrasound but that it may be difficult to operate as I've had a thyroidectomy and that leaves the tissue very delicate apparently and the parathyroid glands may not be where expected.
My brain's lost track now and I can't think whether she said high calcium or osteoporosis was caused by high T4 and that if possible I should lower my dose. I know I've been told otherwise on here but I'd challenged a few things by now!
I have osteopenia but she said it was in line with someone of my age but, of course, I'd rather not have it and do something to reduce it!
I am wondering if I need the high T4 to feel well and it's actually the effects of high PTH and calcium that make me feel ill but I am confusing it with how I feel with lower T4. It's been going on so long (high calcium since at least 2019 when I first had it tested) that it could be the case. I would be suicidal on a lower dose tbh.
I am wondering if anyone who reads this had a parathyroidectomy following a thyroidectomy?
It would be interesting to do a straw poll (or preferably someone research) to see if thyroidectomy and hyperparathyroidism are connected or if hypo or hyper thyroidism and hyperparathyroidism are.
There may be no link but on the hyperparathyroidism site there are many people who have both.
So that's the story so far 🥴
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With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Hi Slow Dragon - yes I've supplemented vit D for 10 years since incidental discovery of vit D at 23. With K2 for 5 years and boron recently. 84 is the highest it's reached. Am on 1000iu now and wanted to raise for the winter but have been put off as I stopped it previously because GP blamed high calcium on it then it dropped to 49 and thyroid cancer doctor said to increase it, so I can't win!
- What should FT3 be in range? And is there a ratio? I've tried to find this on ThyroidUK site but failed! And I'm ploughing through research papers to try and find evidence. Unfortunately there isn't a lot related to people with no thryoid unless that is uder hypothyroid.
- Yes, test always done early with thyroxine 24hrs plus before and no food just water always (5 years plus)
- I don't remember if I had biotin at previous test but was taking a multi B vit. For yesterday's test I'd stopped it for a week and taken B12 as you (I think) recommended previously so I'll continue with the B12 too though I've been taking it for 5 years at least, potentially not always the best type, but I'm on to that now. I may need to up the dose. 410 is about the highest it's been.
Aug 23:
Folate:12.50 (2.5-19.5)
B12: 352 (180-900)
MCV: 88.1 (83-100)
White cell count: 3.50 109/L (4.0-11.0) *low
Globulin 37(22-36)
Aug 22:
Folate 6.77 (2.5-19.5)
B12: 374 (180-900)
MCV: 90.7 (83-100)
Globulin was high at 37(22-36) no idea if this is relevant
Inorganic phosphate 0.77 (0.8-1.50) marked *abnormal no action!!!
It's such a waste of time and resources labs doing these tests and noone looking at them properly.
Now I've been looking at this and links you've sent more carefully I will get all my data together in a spreadsheet and see what I can make of it. I'm not a science graduate for nothing! I should have been on top of this years ago but it's so depressing, with so much going on in life, that I haven't been able to face it. I've taken multi vitamins and specific nutrients over the years including selenium, coQ10, and many others hoping they'll help but I need to pin some things down now to see where the problems lie so thank you.
I've found the name of a relatively local private endo from the list so once I get these results back and a diagnosis or decision from the NHS endo I will seriously consider what to do.
Suggest you get good quality B12 as listed in my previous reply…..and daily vitamin B complex
Take these everyday
Low B12, despite supplementing….Are you vegetarian or vegan?
Week before next test, stop vitamin B complex. Instead take separate daily methyl folate and separate B12 up to day before test
Ratio of Ft4 to Ft3…..ideally they would be at similar levels…..varies as to where within range each person feels best, but typically Ft3 at least 60-70% through range
Many thousands of thyroid patients need a small dose of T3 prescribed alongside levothyroxine
List of thyroid specialists and endocrinologists who will prescribe T3
Hi SlowDragonI was checking some replies on here and saw I hadn't answered when you wondered why PTH of 5 was considered high when it's within range so you may be interested:
Rather like thyroid hormones, when PTH was recorded as 5 twice the tests weren't done properly but regardless of that PTH and Calcium should not both be high or low but like a seesaw to be in balance whereas both of mine are high here even if not over range. Both high is primary hyperparathyroidism, but you can also get normo-calcaemic hyperparathyroidism where calcium is less high but PTH is high, sometimes very high which is more difficult to pick up as calcium within range won't be flagged.
I'm learning a lot, quickly thanks to hyperparathyroidism action 4 change FB group and website which may have been recommended on here.
Since then I have had the test done properly (i.e. from the same blood draw) and a concurrent 24hr urine test both of which confirm diagnosis with PTH 8.5, calcium 2.71. Awaiting neck scan in next 2 weeks.
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Your calcium is too high and D a bit low, have you been supplementing D?
As well as the 24 hour and kidney scan you need a scan of your neck and a couple of other test that only a consultant can order. So you should be seeing and Endo for these.
HPT can cause bone loss as the body tries to get rid of the excess calcium from anywhere it can.
Parathyroid can be almost anywhere in the upper body and you can have more that 4 .
If you are near Oxford I can recriminations a surgeon who is private and nhs and one of the best in the country.
High calcium causes all sorts of symptoms and you have had it for a few years. Do Google them.
Thanks meme. I didn't fully understand that HPT can cause bone loss, endo is saying it's high T4/low TSH that's doing it which my ho also said. Depending on my results (blood and 24 hr urine) and kidney scan I may get the neck scan and then get to speak to the surgeon. I will consider the private surgeon in Oxford or one I've seen recommended here at UCHL (Kings?) as it's near my daughter so I can stay there. Will need to use my pension lump sum if go privately 😕
Oxford man is NHS and private so you might be lucky and get him NHS. It’s around 5k private.
Your body hates having too much calcium and tries to rid it from anywhere via your kidneys. That’s why you can get kidney stones as well, along with bone loss.
Happy to supply Dr’s name by PM if you need it. Cannot recommend him highly enough. He operated on my oh in 2021.
I'm going through this very thing....my first diagnosis of primary hyperparathyroidism was in 2004,they did the watch and wait approach I never felt well and got diagnosed with chronic fatigue syndrome, fibro in 2005.
Diagnosis of hyperthyroidism in 2018 diagnosis of graves thyrotoxicosis in 2019 full thyroidectomy in 2019.
Then In 2020 on two thyroid blood pannles my calcium was over range endo then did calcium, pth, vit D... Calcium was 2.51...PTH 8.1...second.. Calcium 2.54...PTH...9.5....both indicate normocalcemic hyperparathyroidism (where the calcium is at the top and the PTH is over range.
In your blood work it shows over range calcium and within range PTH.
Now the tricky bit.... This is what many endocrinologists don't understand.
The PTH and calcium are balanced and will move throughout the day.. It's called the see saw method... Calcium and parathyroid should be in harmony.. However if you have a calcium at the top end of normal or over range and a pth top end or over range the see saw method is broken :
Exp) .... Calcium of 2.54...pth of 9.5) or calcium of (2.68..pth of 5....both calcium and parathyroid hormone would never be at the top end.
In the same as HYPOparathyroidism.... Where the calcium will be in the bottom range and the pth will be in the bottom range, this usually occurs after thyroidectomy where the para glands can be damaged causing them to become dormant for a short time, hence the endo giving calcichews after thyroidectomy.
In my case like yourself my parathyroid glands went overactive again in 2020 but because my calcium was within range the endo dismissed me saying my symptoms could not be because of primary hyperparathyroidism, again they tried to do the watch and wait.
No way was I doing that again, and my son paid privately for me to see a private parathyroid surgeon he did a ultrasound scan and found a nodule in my neck, cut a long story short I'm now seeing an endocrinologist in Liverpool who through my bloods done on June 22nd as confmed I do have primary hyperparathyroidism, she arranged a pet scan for me although the finding of this are weird... As like you I have so much scar tissue after thyroidectomy, a mass has been picked up in the right thyroid bed but they are unsure at this time what it is.
I'm now having 4Dct scan and another ultrasound scan,.. now here's the other kicker.. If nothing shows up on these scans ie a parathyroid gland the endocrinologist will automatically say there is nothing wrong, you don't have a parathyroid problem 😠 (that's been my experience with 3 endocrinologist in my area Cumbria) but this endo in Liverpool told me just because they don't show up on these scans don't mean you don't have a parathyroid problem, we only use scans as targets, so we can go right to that area, they are not used as a diagnosis, your blood work is your diagnosis.
Parathyroid glands are about the size of a grain of rice, and when they do go overactive they really don't get very big.. In some cases a parathyroid gland left for years to grow can be big maby getting to the size of a small grape, so that's why they are hard to find, some light up like Christmas tree lights on scans .... Some dont🤷♀️.
I hope you manage to see a good endocrinologist because most endocrinologists are diabetic specialists first then thyroid second.. (If that) , they seem to know little to nothing about the thyroid, and know very little about parathyroids so your going to have to educate them, arm yourself with as much info on primary hyperparathyroidism, normocalcemic hyperparathyroidism, and normohormonal hyperparathyroidism.
You may have some hurdles to jump over with your recent bloods as your PTH is in range.... But it's at the top end of normal 🤞
Sorry for the long reply... But parathyroid illness is a complicated thing😔
Sorry to butt in but last year I had over range PTH but below range calcium, my vitamin D wasnt tested but I do supplement. It was a locum doctor who flagged it up as needing retesting 3 months later. This time they tested vitamin D which was very good, low but in range calcium and PTH had dropped to 5, so in range. I'm wondering if this was a temporary glitch or whether it should be investigated further?
If your PTH was over range and your calcium was low and your vit D was low, this is called secondary hyperparathyroidism... They give you vit D to raise your calcium thus normalising your PTH.My first endo did this to me my vit d was 29....but my calcium was 2.60..taning vit D raises your calcium... Not good if the calcium is already high. ❤️
OK so this is the first thing an endo will do... Give you vitamin D.. What you need is new bloods for calcium, pth, vitamin D.... If you had vid d done within a year they will not test it😠 but in order to Diagnose primary hyperparathyroidism you always need... PTH.. CALCIUM, VIT D, (PHOSPHATE, MAGNESIUM as in primary both can be low) Also check B12, do you know if your PTH was done in a EDTA tube? Purple top tube? many gps nurses are not knowledgeable about how parathyroid blood is taken. It should not be left in the surgery and must be tested within 2/3 hours of draw, it degrades fast.
OK here's the rule of thumb.... If you had PTH over range and calcium low but vit D was OK low, but in range, which In it's self isn't good because your supplementing (think what it would be if you weren't) , in primary hyperparathyroidism the vit D is almost always deficient or insufficient low)
As in your blood test done last year you should have had another test 4/5 weeks later... As your PTH was out of range.. Did this happen? If not then as I say above get them tested again, mention about you PTH being over range last year!
What are your symptoms if you are having any?
Have you suffered from kidney stones?
What are your renals like... Creatinine... eGFR (CKD-EPI)
These things need checked by blood tests but endos seem to gloss over these😠 calcification in joints, soft tissue is also a part of primary hyperparathyroidism, it would be interesting to see if you've had any high calciums going back, as calcium can bounce in and out of range in primary hyperparathyroidism, do you have any blood work for calcium over the last few years?
As in my case I had a lot, one being 2.89 and my gp never told me, I requested my records and found all the over range calciums in there😠 your records can tell you a lot.. Your gp won't!!
I get B12 injections every 2 months due to PA. My blood draws are always done at the hospital, not GP surgery. I've never had issues with calcium before now, its always been in range.
I do have historical vitamin D deficiency which was treated by NHS for a few years but they've now told me to buy my own, so I take 4000iu daily with K2. Never had kidney stones or issues with Creatinine. I'm due NHS thyroid bloods soon and they've requested electrolytes and EGFR tests as well.
You mentioned your calcium has always be in range... Until now.. Its not all about the levels, when they say in range it's a big spectrum but doesn't mean your OK.As in thyroid levels they say.. "ho you bloods are in range" 🙄.. "But doctor I still feel awful" WHY"... Truthfully levels don't mean much🤷♀️... What symptoms are you suffering from? Are you thinking it's thyroid related? Under medicated?
Also primary symptoms can show as thirst and more frequent toilet trips to wee.
I do wee quite a bit especially at night but I eat a lot of fruit and veg and drink water. I just asumed it was an age thing. I've been tested for diabetes but it was negative.
Yeah I thought my frequent trips to the toilet was my age.. And no one wanted to help me at my surgery until I'd had enough.. No sleep on up to 6 times a night😠.Gp eventually sent me to a specialist who diagnosed a irritating bladder🤦♀️ and dry mouth syndrome, because I'm always thirsty when in actual fact it was because of primary hyperparathyroidism 🤷♀️ my diabetes tests were always negative, they just couldn't look behond there own eyes🤦♀️ I really despair how professionals can get diagnosis so wrong 🤷♀️
See what those blood tests show👍 but as I said endocrinologists know little to nothing about parathyroid issues, they were treating your vit D but have now asked you to do it yourself.How long have you been supplementing with 4000iu? You should have a vit D test done again to see if your absorbing enough of it to keep your vit D up... But again try to get your PTH and calcium done just to be sure about the levels, as I said they can bounce in and out, and if you have the tested sporadically that's not a good indication of how your levels are... You should have at least 2 in succession with a space of 4/5 weeks.
It wasnt followed up by my surgery, useless as ever. It was a Livi doctor who contacted my surgery and said PTH, calcium and vitamin D all needed testing again and together, which was last November. There's been no mention of testing it again. I didnt know if it needs an eye keeping on it. But as PTH and calcium were both in range I wont hold my breath.
Just a little story on my bloods, my surgery failed miserably with my bloods for primary hyperparathyroidism.This is how it goes with them:
Your first test show your PTH was out of range calcium in range but 'low.... Second test shows pth and calcium in range (but is it a good range???) so with this your endo and gp will be clapping there hands 👏 thinking great we don't need to do anymore parathyroid, calcium blood tests everything is normal .
What they failed to realise is.... PTH and calcium can bounce in and out of range, it's catching it and doing sporadic blood tests won't cut.. This is what my endo and gp did to me from June 2020 (2) normocalcemic blood results ignored, then they do sporadic blood tests missing out PTH🤦♀️ how the hell can you test for primary /normocalcemic hyperparathyroidism if you don't do PTH😠😠 so I had over range calcium and top end calcium, this gave me the ammunition to confront my gp although nothing came of it, that's why I went private to a parathyroid surgeon in Oxford bambary.
He got everything moving for me.
My only recommendation is because your parathyroid went over range and is now 5 right at the top.. (range for PTH being 1.6..6.90) you keep a check on both calcium and PTH.
My bloods did the same went back in range then went out again... But they have to be caught going out of range in the first place.
You say your PTH and calcium are now in range, great but there's nothing to say they won't go back out of range again 🤷♀️
You would think they would want to test them yearly. Everyone who has seen my notes, hospital doctors etc has commented on how unusual it is to test the Parathyroids. Guessing its an uncommon test.
Yes really uncommon, but it can tell a specialist so much, as can calcium when I've has my thyroid bloods done in the past before the second diagnosis of primary hyperparathyroidism they always did my calcium and renals... That's how I found the 2 over range calciums (my gp didn't bother about them.. 2.67..2.63..) 😠Now on my last 3 bloods for thyroid levels I've noticed my surgery are not doing calcium or renals eventho they diagnosed me with CKD last year 🤷♀️ go figure... It says in my records I've to keep a check on my kidney function because of CKD... What a joke eh🤦♀️
Hi there, sorry it's some time later but I have now been diagnosed and having a scan soon. You need the calcium and PTH done at the same blood draw and a 24hr urine collection test at the same time. That's what clinched it for me.Have you been on the FB HyperparathyroidismUKAction4Change group? You will find a lot of very knowledge people and support there and you can post your current and past results for advice. Definitely worth pursuing or you could feel ill for years like me!
Should I take more vit D? If it raised my PTH that wouldn't be a bad thing but as drs blame high calcium, heart problems etc on it it's a bit concerning!
Hi birkie, don't worry about the long reply, it is complicated and I always have long posts as I have so much to say!!!Total thyroidectomy is enough to deal with isn't it? I've supposedly got Sjogrens as when I felt horrendous ten years ago they found antibodies in my blood but symptoms have never felt quite right compared with other Sjogrens sufferers. Last few years I've been sure it's possibly thyroid issue (maybe not converting well) but someone here suggested checking out the parathyroiduk group and their FB page is amazingly helpful along with their website. You may have found it as you're explaingbit so well!
Did they say anything about their being issues with surgery having had a thyroidectomy? I feel it's an excuse tbh as a good surgeon shouldn't be fazed but enjoy the challenge! Endo said parathyroids could be anywhere which made me also hink she's suggesting so don't bother! The words 'watch and wait' almost came out of her mouth but if given her the hyperthyroid UK action for change leaflets by then so she knew I knew quite a bit - though I'm still learning. Hope you get an op soon. You've got no thyroid to adapt to so you don't need this as well. I'm working up to trying T3 when I get my nutrient levels sorted. Good luck x
Hi birkie, don't worry about the long reply, it is complicated and I always have long posts as I have so much to say!!!Total thyroidectomy is enough to deal with isn't it? I've supposedly got Sjogrens as when I felt horrendous ten years ago they found antibodies in my blood but symptoms have never felt quite right compared with other Sjogrens sufferers. Last few years I've been sure it's possibly thyroid issue (maybe not converting well) but someone here suggested checking out the parathyroiduk group and their FB page is amazingly helpful along with their website. You may have found it as you're explaingbit so well!
Did they say anything about their being issues with surgery having had a thyroidectomy? I feel it's an excuse tbh as a good surgeon shouldn't be fazed but enjoy the challenge! Endo said parathyroids could be anywhere which made me also hink she's suggesting so don't bother! The words 'watch and wait' almost came out of her mouth but if given her the hyperparathyroid UK action for change leaflets by then so she knew I knew quite a bit - though I'm still learning. Hope you get an op soon. You've got no thyroid to adapt to so you don't need this as well. I'm working up to trying T3 when I get my nutrient levels sorted. Good luck x
Sorry about duplication lol. Very interesting. Would be interested in keeping in touch if you're on a parathyroid UK action 4 change FB group? I am but different name! Can you tell me more about the other things tested eg efgr and phosphate as I've had some of these out of range (I've forgotten which way now, phosphate low and a comment on edge but may have been a generic comment) and also high globulin and low white blood cells. I'm trying to research...we'll all deserve a degree after this!
My experience is that if you have an out of range test and another in range one, before or after, they ignore the out of range one and say it must have been a 'blip'. They may not have time but what about professional interest? Or proper comments by the lab?
What's he weeing at night about? I DK this more than I used to and thought it was because I couldn't sleep therefore I may as well wee when awake?
Blood tests for any parathyroid issues weather it be.. Primary, normocalcemic, normohormonal or secondary should consist of:PTH
CALCIUM
VITAMIN D
MAGNESIUM (this will be low.. But not always)
PHOSPHATE (this will also be low.. But not always)
IONISED CALCIUM (although this is like winning the lottery😂 they don't always do it)
PTH should be in the EDTA tube purple top and not left to long before testing as it degrades fast.
IONISED CALCIUM should be done in the red top and done within 2 hours of draw.
The blood testing for parathyroid issues is a mind field.. What the specialists fail to understand is CALCIUM and PTH can bounce in and out with these conditions.
So let's say you saw the endo 5 wks ago your bloods were PTH 8.1..(over range)... Your CALCIUM was 2.61 (over range) your VITAMIN D was insufficient, this is classic primary hyperparathyroidism 👍
you get the letter saying... THIS IS PROBABLY PRIMARY HYPERPARATHYROIDISM.. then they do futher blood work 5/6wks later and now your bloods are:
PTH.. 5 (in range)... CALCIUM 2.53 (in range) vit D won't have moved much, and gp endo say... "ho your bloods have gone back to normal".. Bye bye 👋..... STUPID!!!! (they did this to me, until my calcium went over range again, and again I forced them to do a PTH, CAL, again.
The right way is to have either 2/3 consecutive tests 5/6weeks apart... (No sporadic tests, that's just a waste of nhs money)
If you have on those tests 2 over range of PTH, CAL, Vit D then you should see a specialist parathyroid surgeon, because the only cure for it is surgery.
The same for normocalcemic, where the calcium is in range but at the top end, and the PTH is over range, vit D insufficient or deficient same applies.
These levels are not good..... PTH 5 or 6....cal 2.54 or 2.59) these will never be at the top end together, this shows your see saw is broken if one is up... The other will be down that is normal 👍
Fogt to say... Yes parathyroid glands can migrate, especially after thyroidectomy, some are found in the most weird places, one patient had one by his heart, some find there way under your collar bone, some round the back of the neck near the spine some can be buried in the thyroid it's self.The mass they saw on my pet scan could be a bit of thyroid left over it's 12x13mm but a parathyroid could be buried in it, as it lit up.. So if it is a bit of thyroid he didn't do a good job of removing it, I had graves thyrotoxicosis, 🤷♀️ wonder if he should have left any thyroid in my neck at all😠
Hi.. Yes I'm on HYPERPARATHYROID UK ACTION 4 CHANGE they have been invaluable, I managed to speek to a surgeon on there I saw him last Nov he did the ultrasound scan found a nodule and recommend the F18 pet scan, which I've just had.The scan showed a mass in the right thyroid bed and a nodule in the left, and my tonsils, saliva glands, pritruitry and liver showed imflamation 🤷♀️ although I have no idea what that means 🤔, I'm speeking to the endo on the 15th of Nov.
As for surgery (thyroidectomy) i was assured all symptoms would go.... They have not.. And I asked my surgeon in 2020 when my parathyroid hormone was over range, could they have been compromised during the surgery... "NO" was his rather cutting answer 🙄.. He gave me the calcichews and instructed me to chew on 2 per day... Tbh I couldn't stomach or swallow them, I think in the 3 weeks I'd had around 5 chews.. I had my blood done for thyroid 3 weeks after thyroidectomy, the surgeon rang me telling me to stop the calcichews immediately as I was over loading on them and my calcium was over range 😂😂😂 I wasn't even taking them and told him so.... So why was my calcium over range? No answer from him.. 3 weeks later I was admitted to hospital passing a kidney stone.. 🤦♀️
But there are plenty of patients who after thyroidectomy go on to develop primary hyperparathyroidism 🤔 makes you think if there's a link doesn't it🤷♀️
It does! And of course parathyroids can be damaged during surgery - it would be odd if they weren't considering their location! My surgery was 40+ years ago by ttop European thyroid surgeons at RMH and mine were damaged. They said so after I had horrible symptoms and I got calcium, but not a long follow up. My daughter had hers removed 20 years ago and there was little mention but then she went privately to an Endo and was told she was hypoparathyroid so hers were obviously irrevocably damaged. She's on calcium and vitamin D but I need to show her all this new info to keep her healthy too! I had radioiodine too which is meant to be linked but when I mentioned this to the Endo she dismissed it!
I think endos should have these conditions before they're allowed to treat people with them!
And yes you're always the one to blame! You're taking too much this or that or not complying with your thyroid medication - all Drs seem to think women just want to feel amazing by taking lots of levothyroxine and they need to prevent this at all costs. You tell them how bad you feel and they say 'whats going on in your life, maybe antidepressants? Or CBT??' It's so misogynistic! I suspect they'd be delighted if a male thyroid patient felt well and was high in range - would probably give him T3 just to make thim feel the best he can! I'm not bitter at all!
Poor things! Don't get me started on the NHS (and any other areas if life) and misogyny! It's about time we all rose up and sorted this once and for all - if we weren't so exhausted. I'm sure that's the plan to keep women down by misdiagnosing, blaming it on menopause then age then oops it's too late! 😡
Slowdragon brought your post to my attention, forgive me if I've replied to already but I can't remember replying 🤦♀️.
But I'm the same as yourself, full thyroidectomy in 2019
But first diagnosis of primary hyperparathyroidism in 2004 to which my endocrinologist did the watch and wait.
After thyroidectomy I was having thyroid bloods taken which included calcium, at this point thanks to this fantastic site I was getting printouts I noticed on the last one, my calcium was flagged up (2.67)🤔 but gp never bothered.
I looked back on my last lot of bloods from 7 wks ago and again my calcium was over range, I informed my gp (felt like I was doing a job he should have been doing 😠) I asked why my calcium was over range? got the gaslighting answer... "ho it's only mildly over range"... No such bloody thing!! If our calcium goes out of range there is a reason and should be investigated.
I asked him to send all my calciums to the endo, diagnosis.. Primary hyperparathyroidism.. AGAIN!! but this time I'm taking charge and finding out why I've been diagnosed twice with this disease.
First, when thyroidectomy is performed it's more likely you can develop HYPOparathyroidsm as the para glands can be bruised causing them to malfunctioning for a short time, this is why we are given calcichews after thyroidectomy.
Like you mine went overactive I had over range pth and top calcium when my endo decided to finally do PTH, calcium and vit D together, my last bloods done on June 22nd 2023 were pth 7.4 calcium 2.65 adj to 2.61).
I've had a US scan privately (parathyroid surgeon) who identified a nodule in my left side, then F18 pet scan which as flagged up a mass of 13x12 in my right thyroid bed, FNB results were it appears to be thyroid tissue (but could a bad para gland be hiding in there🤷♀️).
So now waiting on 4D ct scan 🤦♀️
This is because like you I've already had invasive surgery on my neck and going in can cause futher damage so she wants a target, but in certain cases no parathyroid glands are detected on scans, but they are still found when the surgery is performed 👍.
A good parathyroid surgeon should be able to do the operation.
But I'm struggling with my thyroid medication although mine is stomach and bowle related (colitis /lactose intolorent) but I've had some strange results in my bloods, some show hypo while other show over medicated.. Strange as I'm only on 20mg of T3.
The consensus is the endocrinologist likes to see calcium over 2.85 (nhs guidelines 😠) although many patients never reach this goldilocks zone, I know plenty who's calcium never went past 2.60 and still they had a rouge parathyroid gland taken out by private surgery.
Believe me I thought thyroid conditions were hard for endocrinologists to understand, but parathyroid.... Well that's a whole difference ball game 😔.
Symptoms of PHPT.
Frequent trips to the toilet to pee
Thirst
Kidney stones
Feeling sick
Loss of appetite
Palpitations
Sweating, tremors
Fatigue
Insomnia
Bone/body pain.
Sometimes it's hard to tell if the symptoms are parathyroid related or related to our thyroid medication 🙄.
Hi BirkieVery like me tbh. IBS type issues forever, hypo, hyper, then not sure. Aches, pains, exhaustion. All very variable but can improve on some good vitamins then and feel good then suddenly bad again. Gaslighted by GPs who won't have a good discussion with you just do t want you to know more than them.
I think Jan an other post I've said I have 2 of the variants that make me not convert T3 so am trying to sort that. Also the variant if the MTHFR gene (well named) soni don't absorb folate and B12 well. Checked all that out and to get a good test for b12 need to be 4 months of no supplements of it and then on injections. I have no faith my GP will agree to that. And I don't know if I can allow myself to feel that bad without b vitamins again.
Are you kn the parathyroid daction4change FB group? It's fantastic for support and also the parathyroid UK website.
Do you mind if I ask where you are? The FB group recommends surgeons and may have you advice on finding a good experienced one. I'm in Somerset but once I have a scan I plan to go to a particular one through a GP referral. If you don't get the right one you can end up needing a repeat op. A skilled surgeon will check all four out.
The peri g is the worst - huge amounts all evening till about 2am and the need to therefore drink a lot! Did you have the 24hr urine test? That's also definitive but the blood test is the diagnosis and you should get to see a surgeon based on that.
I don't know why there is so much overlap between theyiud and parathyriod but it's interesting that they both have input to calcium use and maybe to do with loss of thyroid and therefore calcitonin? I can't find any evidence though.
I'm In Cumbria 🙄 which as I've found out, to my mind as the worst endocrinologists ever!!.
Due to the FB group Hyperparathyroid 4change I was directed (privately) to a surgeon in bambary, he got things moving for me, I'm now under a surgeon in Liverpool, who as now diagnosed me with primary hyperparathyroidism 👍.
But after F18 pet scan which detected a mass in my right thyroid bed (full thyroidectomy in 2019 🤔) this mass had a low grade uptake, through FNB it was concluded to be thyroid tissue 🤔, but my question to the surgeon was "could the bad gland be hiding in the mass?".
The surgeon said she wants to leave the thyroid tissue (13x12mm) in situ, she doesn't feel the need to investigate it🤷♀️.
Personally I think that's the wrong decision.
My first diagnosis of primary hyperparathyroidism in 2004, I had 3 over range calciums and only one PTH done🤦♀️depleted vit D, my 24hr urine test showed large amounts of calcium oxalate crystals, the endocrinologist wrote saying it looks like primary hyperparathyroidism but after another blood test they told me they were happy to do a watch and wait approach 🤦♀️.
This time 2020, my first bloods showed normocalcemic hyperparathyroidism, my calcium was top end and pth out of range (PTH 8.1..cal..2.51)...(pth..9.5...cal..2.54) my urine didn't show much calcium out put tho.. My last test in June at Liverpool 2023 (PTH 7.4...cal..2.65..adj to 2.61).. Urine calcium not 24hr showed normal Diagnosis primary hyperparathyroidism 🤷♀️.
The surgeon is hoping for a target but this is not always the case as parathyroid tumours don't always show up on scans🙄 she as now arranged for a 4D ct scan next feb😞 she knows I have a gremlin somewhere but is reluctant to go in to look around, saying I've already had invasive neck surgery and there is more chance of damage to the vocal cords ect.
But as I said to her.. "I'd sooner sacrifice my voice than live like this" 😞
So now I'm playing the waiting game again till next Feb, although she as said if nothing shows up she will not operate on me😠.
Like you I'm drinking lots of water, but that doesn't always work as my calcium as gone over several times causing awful symptoms 🤢.
I've been told many times by the FB members the only cure is surgery, so I can't for the life of me understand why this surgeon won't just do it🤷♀️.
And to boot I'm struggling with thyroid medication, I feel like I'm on a roller-coaster to hell, no getting off😞😞
Yes I may have seen you in that group but I have a different name there as I expect you do. The female surgeon at Liverpool is said to be excellent so follow her guidance and that of the group. I have ultrasound scan next Monday then will try and get referred to my surgeon of choice.Re thyroid I am finding it more difficult to manage and wonder if there's a connection. I need T3 but have to pay private endo to get it as they don't prescribe it here without a lot of hoo-ha! Not sure if I have the energy, or the money tbh! Good luck, I'll check out your progress in the FB group. x
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