Doctor's /endos thyroid /parathyroid knowledge

[birkie]

Hi everyone ❤️

I suppose this post will be a rant on just how little doctors /endos know about our conditions, and how for some of us it's a struggle to just get them to listen to our concerns, I've had several calcium levels of.. 2.61..2.67..2.89.2.75..2.67 and the last one done 1st Feb 2.80..range.. 2.10..2.60mmol/L) also had 2 pth levels Done in june/Aug last year, an endo has been looking after me, he pulled these calcium levels from my records hence him doing the 2 pth tests last year as no pth tests were done when these calcium levels were like this!!.. I have never seen this endo face to face due to covid, all this endo has done since last year is blood work after blood work, he wrote to my gp saying.. "The important question here is the cause of her mild intermittent hypercalcemia the main differential being primary hyperparathyroidism and FHH) My FHH test was negative, first of all Mr endo there is no such thing as MILD HYPERCALCEMIA!! any calcium above the top range of 2.60 should be investigated along with a pth.. Findings on hyperparathyroidism have shown blood work in many patients can vary from calcium ranges of 2.60 upwards and these patients still presented with a tumor, or overactive parathyroid gland or glands, their levels will bounce around, 2.60..to 2.87 and above and it's still hyperparathyroidism, in most cases calcium levels fluctuate from.. High, to slightly high to high normal, fluctuating levels of calcium is one of the 10 rules of norman"this endo noted a vitamin D deficiency (29)..range... 50...70..nmol/L, he prescribed me vitamin D, (it is noted a person with hyperparathyroidism should not be given vitamin D as the body lowers the vitamin D in order to protect the body from high calcium levels) he should have known this!!!, He has now got my doctor fixated on my calcium levels being only mildly elevated so no need to do anything here!! This has also been my doctors approach to the condition nothing to see here even though I have been back and forth to the surgery with awful symptoms.. Mainly, heart palpitations (fast) headache, sweating, peeing loads very thirty, insomnia total fatigue and totaly exhausted , I also had a DEAX scan which has shown ostiopeania in my spine, and x rays of both knees /ankles which said, cloudy soft tissue, calcification noted may indicate calcific tendinitis, bilateral meniscal chondrocalcinosis noted in both knee joints and ankles.. I was admitted to hospital in 2019 passed a kidney stone and again in 2020 passed a kidney stone, I have a gal stones, Gerd, bowle and stomach issues bad bone pain, all these are linked to untreated hyperparathyroidism, my thyroid was removed in 2019 after diagnosis of graves, my endo (who I have now given the boot) and my doctor cannot see a connection with the ostio, kidney, gal stones, stomach /gut, insomnia, bone pain!! This condition was called, bones, stones, groans years ago, well I lost it in his surgery yesterday 😠 I asked if he could please send me to a specialist who knows what they are doing and I'm not waiting months to see one, everything is in my blood work and Symptoms connecting it to hyperparathyroidism, again reluctantly he agreed to try to get an appointment with a specialist as soon as he could, I'm totally bewildered and angry how these so called professional people can not look after us properly they know doubt have eye watering salary!! 😠 Well I'm totally exhausted and still angry about the lack of care by my doctor and this so called endocrinologist. I'm seriously looking in to neglect by both.. 😠😠

[bantam12]

As I have said several times you need to see a reputable surgeon experienced in parathyroid surgery. The Endos and GPs don't see many if any patients with hpth so it's not surprising they are dithering.You should research a surgeon you want to see and then insist on a referral, I'm afraid it's down to you to push this forward as the majority of hpth patients have had to do.

[birkie in reply to bantam12]

Hi bantan12❤️❤️ thanks for the reply

That's what I tried to do yesterday firstly I told him I need to see a specialist (surgeon) as I have already got hyperparathyroidism, his answer no you only have mildly raised calcium 😠.. And your pth has returned to normal, yes it has because I had been taking vitamin D. 😠.. (no longer taking it) he refused to do vitamin D test yesterday) I honestly don't know how to go about getting a surgeon as I'm under this gp, I can't go private I can't afford it.. So how do I go about getting an appointment with a surgeon without a referral from my gp... 😔😔

[birkie in reply to bantam12]

Hi bantam12...What do you think of this for an idea, just going back to your comments on a good surgeon, what about the surgeon who did my thyroidectomy? I still have his e mail.. Would it be possible to e mail him the calcium /pth results, tell him about my awful symptoms since last year, do you think he would respond or just recommend I see an endo first?

Many thanks ❤️❤️💗

[bantam12 in reply to birkie]

It might be worth a shot, he will probably need a referral from an Endo anyway but if he's prepared to help by writing to your GP or Endo then it may work, assuming he does parathyroid ops of course. When I eventually got to see my surgeon he was furious that I hadn't been referred to him much early, he was on a mission to change how hpth is diagnosed and to stop the delays in patients getting the surgery but it was no doubt an uphill battle !

The pth forum my late husband and I ran was chock full of members having the same problems in getting treatment, some went over to Normans clinic in USA but it didn't always go well and many had to have further ops back here so it's not easy wherever we are.

[birkie in reply to bantam12]

Hi

I've wrote out a letter to him stating all the calcium /pth ..levels, and my symptoms, new diagnosis of ostiopeania, x rays of both knees /ankles show.. Calcific tendinitis, bilateral meniscal chondrocalcinosis, subarticular sclerosis and small marginal osteophytes, bony or joint abnormalities, passing kidney stones, gal stones ect... Ho and the above joint, ostio thing my gp said is not so bad,, wouldn't even prescribe any pain meds for me I'm only on paracetamol, unfortunately I can't take anti inflammatory tablets as I had a very bad reaction to them doc says well I can't give you anything only opioid meds, 😤.. I don't know if he deals in parathyroid surgery, but hey its worth a go as I feel so bad... I have also out lined the 10 rules of Norman, for the future appointment but that is for the endo if I have to see one... I read up on the 10 rules of Norman very informative, 👍

[humanbean]

I've never tried this myself, but it might be worth a shot... or it may be utterly pointless...

If you investigate surgeons who can treat hyperparathyroidism, once you have the name and details of one you would like to see could you write directly to the surgeon himself to see if they will see you? They might tell you if a referral to them is a good idea or not. Or they might be able to give you a name of someone who might be more appropriate.

There is a massive problem with making GPs be the gatekeepers of the NHS. GPs are generalists, and know superficial stuff about lots of conditions. They also have the job of saving themselves and the NHS money. So, being under-educated non-specialists on lots of conditions they always assume by default that any condition a patient presents with is not serious.

[birkie in reply to humanbean]

Hi❤️

I agree with you on the gp thing, you can tell there only aim is to save money, he re took my thyroid bloods, T4, T3, TSH.. Because the T3 came back as 16.5 the TSH was 0.1...t4..2.5...im only on 35mg T3.. Been increasing from 10mg to tolerate it, was doing OK till Nov last year when my calcium shot up then went normal then went up again in feb/march.. The gp told me I've taken the full panel but I can't promise the hospital will do them as you only had them done recently 🙄.. Well why don't you just write on the form.. Due to the incompetence of one of my nurses who was taking ionised calcium and thyroid blood tests put them in the same tube.. ( ionised calcium should be in a red top) the test for thyroid could be flawed... So please just do them... He thinks my symptoms are because of the high T3..... I've had these symptoms since last year my T3 was only 4.3..then TSH of 19.32 T4.. 2.6...ven lower in Feb at 3....they just seem to grab on to anything that fits the narrative without looking at the bigger picture 🙄🙄🙄

[birkie in reply to humanbean]

Hi humanbean ❤️

Maby some good news 😊 I've looked up my thyroid surgeon he specialises in thyroid surgery and parathyroid surgery 👍 just one small question,, do you think it would be unethical of me to go above my gp 🤔 as he is sorting out a endocrinologist for me, I really don't care much about him I only care about my health also should I inform him I've written to my surgeon on this matter.

Thank you ❤️❤️

[humanbean in reply to birkie]

How long have you been seeking help for the problems you have now? If you've been made to wait without help for a long time it seems entirely reasonable (to me) to look for the best person to help you.

But whether you seeking help from someone yourself is unethical, I don't know. It might depend on your GP's personality and whether or not they are insecure. But psychoanalysing doctors has never got me very far!

I'm afraid I'm no use at these kinds of questions. I have a very poor record with doctors myself, so nothing I say on the subject has any value and shouldn't be trusted. I seem to piss them off just by existing.

[birkie in reply to humanbean]

Hi ❤️... Love the fact you piss them off.. 🤣.. I'm afraid my gp feels the same about me, I'm a nuisance.. Actually I was diagnosed in 2004 with hyperparathiyroidism but my then gp /endo did a wait and see approach, I got sick of trying to get well again and left that surgery.. Think I moved from the fat in to the fire!! This new surgery seemed great I saw a lovely lady gp she sent me to Newcastle where after tests he diagnosed ME/fibro cfs.. And that was that.. I started with problems last year after hospitalisation for passing a kidney stone they found my calcium was high, I was referd to an endo but never saw them only phone consultation, then I was put in touch by that endo to another endo after the first one said she had no experience in parathyroid illness, this endo did blood work and a uptake scan which showed no uptake since last year june 2020.., he keeps Saying I only have mild elevation of calcium, which is so wrong😠😠

[Jenny583]

I am so relieved to see that you have stopped the Vitamin D3 birkie. You are a real strong fighter! & I see no reason why you can't put in a complaint against these - insert appropriate names here.......... I don't know what these tests are that the nurse messed up, but it sounds like - as you have said - the T3 result is suspect, which could explain a lot.

Keep fighting, & inspiring us. Take care. x

[Alpaca20]

HiI just wondered what your pth levels were when tested ? How are you doing now ?

I’m having similar issues now I feel I have so many hypoparathyroid symptoms but no one is listening !!! Had bloods done 2 weeks ago

My pth level was 1.6 pmol/L (1.6-6.9)

Calcium 2.23 mmol/L (2.20-2.60)

Adjusted calcium 2.24 mmol/L (2.20-2.60)

TSH 0.71 mIU/L (0.27-4.2)

They didn’t do T3 or T4 !!!! Diagnosed with Graves in 2016 , was on carbimazole but taken off it in Feb this year…

Thanks

[birkie in reply to Alpaca20]

Hi Alpaca20❤️Both my PTH where 8.1 in June 2020 then 9.5 in Aug 2020...my calcium has been bouncing around for years, I request my medical records in Nov last year some were 2.76..2.67..2.61..2.89..one on march1st.. Was 2.68.one on march 29 was 2.35..) First you must get T3, T4 done only doing TSH wil not tell your gp how your thyroid is functioning, low calcium yours is 2.23 just 3 above range it could be hypoparathyroidism, Low calcium low pth.. there's primary hyperparathiyroidism, secondary hyperparathiyroidism, secondary is usually due to vitamin D deficiency, have you checked your vit D?.. You could be on the verge of hypoparathyroidism) just because your levels of calcium /pth are in the normal range does not mean you are normal, this is the mistake gp/endos make.. Also how could they take you off carbimazol if they didn't know what your T3, T4 were, 😠 look up hypoparathyroidism and its symptoms, I'm struggling everyday now, my thyroid was removed in May 2019 due to it being so toxic... I thought I'd be on the road to recovery my thyroid bloods are looking good now, but last year in April I started with hyperparathiyroidism symptoms, I knew what they were right away as I'd been diagnosed with early onset of primary hyperparathiyroidism in 2004 but just left I now have ostiopein, passed kidney stones over the years, have gal stones, calcification in joints and heart, all because of untreated primary hyperparathiyroidism, you are obviously not feeling well and should find out why, and believe me I know how hard it is to get GPS to listen, it took my gp 12 months to diagnose me with hyperthyroidism, then it was to late I lost my thyroid because of them😠.. There are hyperparathiyroidism and hypoparathyroidism / as you will know hyper means you feel hyper/ hypo means you will feel sluggish tired,.. Are you not on ant thyroid meds? You need to go bk to your gp and stand your ground on everything, bloods, symptoms ect... ❤️❤️

[Alpaca20 in reply to birkie]

Gosh I’m so sorry to hear you’re suffering so much thank you for your reply . You’d think having thyroid removed would Atleast help . You’re so right it’s like a constant battle to get heard isn’t it they just put everything down to anxiety even when not every thing has been ruled out medically …

My gp has said today that she will write to endocrine however because my bloods are in range it’s very hard for them to do anything about it , all I’m asking is they regularly check bloods in case they fluctuate . My last endocrine appt they said if my bloods are stable in 6 months they will discharge me which seems absolutely crazy when I’ve already relapsed when they took me off carbimzole before . I’m completely off carbimazole now …

She said they don’t like like to do PTH tests if it’s in normal range once ?? I wonder why.

I literally have so many hypo parathyroid symptoms and now under cardiology as my ecg was abnormal so waiting for an angiogram getting lots of chest pain etc it’s all very scary !!!

The weirdest thing is the shaking and I feel like I’m vibrating inside , this has come on since I’ve been off carbimazole .

My GP has also said today she’s sorry there’s nothing more they can think of that could be causing my symptoms and that over time it may become more apparent what the problem is arghhhh!!!!

What’s the next steps for you? X

[birkie in reply to Alpaca20]

Hi Alpaca20❤️Firs let me tell you I started with symptoms of an overactive thyroid at the end of 2017.. BUT.. looking bk on my medical records I noticed in 2013..i had a TSH of 0.08..with what they said was a normal T3.. At 5.8..i now know this is a sign of a failing thyroid,, auto immune (graves) I had out of range TSH after this to and in 2014 a endo said through blood tests I had episodes of thyroiditis! This is a swelling of the thyroid, they never did anything and have let me suffer with both conditions hyperthyroidism /hyperparathiyroidism 😠 I bet your thyroid is failing more so now your not taking any anti thyroid meds, I had several bouts of tachycardia I was in hospital with.. There just recently with a resting rate of 133...yes the shaking /tremor are awful I feel like I've got parkinsons at times, also I sweat bad, but only on activity, like getting up, making a cuppa, ect..im exhausted just doing this.. I'm in bed most days as I can't oparate as normal I have no life.. Its not normal to feel this way.. I thought after thyroidectomy I'd get my life bk my bloods are OK now for thyroid...But I'm not.. And you sound like me,.. You really need to push Yr gp to get a full thyroid pannle and calcium /PTH magnesium, phosphate, vitamin D.. You can get a thyroid blood pannle done privately by medichecks, someone more up on this could guide you on private blood tests.. I can't afford it, but my son said he would give me some money but someone on here said PTH can only be done in London I think, , you can get vitamin /minerals done private calcium comes under that I think.. As I say great if you can afford it.. I'm afraid you will have to be a nuisance (like me) and bug the hell out of your surgery, I printed out all the symptoms of hyperthyroidism and ticked most of the ones on the list. . Obviously my gp didn't care, I've done the same with hyperparathiyroidism but this time I'm a dog with a bone.. I told my gp they failed me with my thyroid diagnosis, but I won't let them fail me with this.. I've got an appointment with the endo received the letter on Saturday, and it better not be a phone appointment, you can't explain or show your printouts over a flipping phone appointment 😠.. I just want referred to a surgeon, preferably the one who took my thyroid out👍 for the sake of your health bug the gp... You need to see your T3, T4, TSH... And thyrotropin receptor antibodies, (TRAb) please go back and make them do Yr bloods quote the NICE guidelines to them..you can find them on line.. Keep me posted... Check out PAL's to they can help, 👍❤️❤️❤️❤️