Had my appointment with the endo on Wed to say I was disappointed would be an understatement 🤦♀️right from the get go she was very divensive, the very first thing out of her mouth was " I think the t3 you were taking was probably causing all your problems, obviously your not getting along with T4 as your last blood work shows.
Then she gave me a short lecture on the bad effects of taking T3 and how it can effect the heart!... OK enough thanks endo!!! 😤.. I went on to explain my symptoms have nothing to do with T3.. Urinating for England, server thirst, constant headaches, bad bone pain, with bone vibrations, PTH over range with calcium at the very high end of normal twice in 2 blood draws indicate normocalcemic hyperparathyroidism, I explained I've had calcium over range on more than 3 occasions (unfortunately no PTH were tested along with the calcium).. you yourself wrote to me stating i probably have primary hyperparathyroidism! But have decided after one normal blood test i now don't have it.
She interrupted me constantly, not letting me state my case.. upshot.. First she never gave me my new thyroid blood work ( taken on 31st july) she never told me my blood pressure result taken by her nurse, she droned on about my thyroidectomy I had in 2019 as being the problem with my croaky voice and the throbbing pain I'm experiencing and trouble swallowing, I trully gave up.. I just wanted to go back home at this stage 😢.. Then out of nowhere she said "I'm going to pescribe you liquid levothyroxin" shocked i said "ho ok" and that was the end of the appointment, I came out in a bit of a daze.. Wether i can obtain the liquid levo from my surgery is another thing, as it was hell getting t3, but im now unsure if this stuff is t3 or t4? As the last time this endo took me off t4 teva it was because I was not converting it into t3, do any on here know if there is liquid t3? And if this is t4 liquid levo will i not have the same problem with conversion?
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birkie
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(In Italy, the product Liotir is a solution of T3 in alcohol. But neither that nor any other liquid T3 is available in the UK.)
There are several levothyroxine oral solutions licensed in the UK. But we have recently heard several reports of members having difficulty in getting it dispensed by their pharmacy. (This might only be the case where the member requires a specific make.)
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
it's liquid T4., (not T3 ~ that isn't available as far as know ... not sure if it even exists)Liquid T4 is pretty expensive , but as you'll know from posts on here it does suit some people who have had big difficulties with Levo before .
As for knowing how good your conversion from (liquid) T4 to T3 is going to be , the only way to find out is to try it , get the dose optimised so you are taking enough of it , and then test T4 and T3 together under proper conditions .
We all convert some T4 to T3, it's just a question of how efficiently we can do it, some are better than others .... if you don't have any properly taken T4/T3 blood results from when you were taking an optimal dose of levo , then we don't really know how efficiently you converted (tablet) T4 to T3 .
So the best thing to do is try the liquid , and once dose is optimised . then see how conversion is ., and how you feel on it .
HiThank you, yes im going to give it a go tattybogle, my conversion on T4, T4 teva was awful.. I managed to aquire pretty good TSH, T3, on teva T3 I was OK on this the only thing it gave me was a bad metallic taste in my mouth, through my gp blaming all my ongoing symptoms to the T3 I reluctantly came off it for a trial, she put me back on the teva T4, all my thyroid hormones went out of wack again, I asked to be put bk on the T3 she refused saying I needed to see the endo for that, hence the appointment, I will need to be firm in getting T3, T4 tested as my gp told me when on T4 only we only test TSH as they have done.. TSH.. 12.43..then went to 6.40..but no T3 or T4 to see if I was converting 🤷♀️
getting fT3 tested on NHS is not really about being firm .. there's no way to make them do it it they unless they specifically want it done ... if you want to know how your T3 Level looks on liquid Levo you will probably need to get it done yourself .
It's seem pretty clear the endo has decided not to give you the T3 back due to the extreme symptoms you complained of when you were on it .
I realise you are convinced those symptoms are parathyroid/calcium related, but NHS are not convinced there is any ongoing problem with your PTH/Calcium levels , they do not agree with you .
They made the "? hyperparathyroid" observation a few yrs ago , but they have since had several results that have reassured them it's not a parathyroid problem.
I think you might be fighting a loosing battle waiting for the NHS to give you what you want here .. they have obviously decided you've had your 'trial of T3' and it didn't suit you , and they have now pretty thoroughly investigated your suspected hyperpararthyroidism (that was noticed shortly after your thyroidectomy) and haven't found any evidence since then of a parathyroid problem they can treat.
Sorry seeing the endo was so disheartening , but I'd give this Liquid Levo a proper trial while it's on offer for free...... it might suit you much better than 'normal' levo did .... but as for the T3 ... honestly i think if you want to go back on it you're going to have to get that privately or DIY.
My son is paying for a consultation with a surgeon, Mr Truran Newcastle, my bloods in June 2020 were. PTH... 8.1..ranges 1.60..6.90
Cal...... 2.51...ranges.. 2.10.. 2.6
—-----------
Aug 2020
PTH...9.5
Cal......2.54
The definition of normocalcemic hyperparathiyroidism is a condition characterized by normal serum calcium in the face of elevated parathyroid hormone it can be primary (nPHPT) due to the autonomous secretion of PTH from one or more parathyroid glands, or secondary (nSHPT) due to reflx rise as a result of a LOW calcium stimulus.. As my calcium is to high I don't fall in to the secondary category.
Unfortunately my surgery did not follow through with the correct procedure to test for parathyroid problems after my Aug bloods, they failed to perform all 3 PTH, cal, vit D, I managed to get one done at Hexham in sep 21 which came bk as PTH.. 3.6..cal..2.41
Vit D 41, then the endo requested a second in Dec 2021 he failed to do all 3 only doing PTH.. 2...ionised cal 1.25..no vit D no blood cal... He discharged me saying go to your surgery and get them re done I do apologise for not managing to do the full count, my next was March 2022 ..PTH..6.6...cal..2.64..adj to 2.49 vit D 43...these show a inappropriate relationship between PTH and calcium...when both are at the top end or over... This is the information I have from NHS normocalcemic hyperparathiyroidism, and many who suffer trying to get diagnosed via the NHS and those who have had successful surgery, private might I add... I'm not silly in knowing the nhs don't want to recognise this as a parathyroid problem and place it bk on my thyroid drugs, but if this liquid levoroxine takes my symptoms away I will be very surprised 😊
HiI came off the T3 in the late feb to see if the symptoms would go if they are linked to T3 as gp says.. This was with the GPS knowledge, my symptoms haven't gone , I started on 50mg T4 teva in Feb for a 7 wk trial.. I knew all my bowel and stomach problems would return, they did.. My first blood showed TSH of 12.43 it says march 14th 2022..TSH.. (12.43)...(T3..1.5)..(T4..2.50.).then the next lot no T3 or T4 but TSH was (6.40) obviously the T4 moved my TSH down but I don't know what my T3 or T4 was.. But because of the side effects of the fillers I was told by my gp to decrease from 50mg to 25mg because of the side effects, and she will sort an appointment out with endo.. Had bloods done on 31st July but endo never discussed them with me I will need to get a print out next week, so I don't know what the 25mg teva T4 as done to my thyroid hormones but it can't be good 25mg is not even a starter dose.. 😔
" ... I started on 50mg T4 teva in Feb for a 7 wk trial.."
I think you're getting muddled with your dates there :Jan 19th post healthunlocked.com/thyroidu... ... said you'd been taking 30mcg T3 for 4 days. Then you gave us this result:
results after 8wks on 30mg T3.... 14th March : TSH 23.47 / T3 1.5 (3.1-6.8)/ T4 2.50 (11-22) healthunlocked.com/thyroidu...
results after 7wks on 50mcg Levo (teva)... TSH 6.4 ~ from this post on 25th May healthunlocked.com/thyroidu... ~you wrote " I had my bloods done on the 16th March gp as just rang with my new blood results..firstly surgery refused the full thyroid pannle T3, T4, TSH..) only doing the TSH..now at (6.4) after 7wks on the T4 teva,......"
but i think that's a typo and you must have meant 16th May not 16th March, as you were still taking T3 in March .
So if you are looking at some results dated 14th march, then they are from when you were taking 30mcg T3 ... and you have previously told us that those results from 14th March were TSH 23.47 / T3 1.5 / T4 2.5 .... not TSH 12.43/T3 1.5 /T4 2.5
So somewhere among the line , you seem to be in a bit of muddle about what your results are .
I can't find the results, for Jan, Feb.. I know I have them, when I typed that post it didn't look right🤦♀️.. All I can remember is my blood on the teva T3 were TSH.. 0.05..t3 6.4 I think.. This is why the gp said I was over medicated and this is why I have the symptoms, so she decreased me from 40mg to 30mg.. That made me hypo but I can't find that print out, I know it said shows hypothyroidism needs to increase meds, that's when I told her I would come off the T3 to see if my symptoms go.. She put me back on T4.. I think the next test was the one with the TSH at 12.43..again it said hypothyroidism needs to increase meds.. But I couldn't due to side effects, but still on 50mg my next one was TSH 6.4..no T4 or T3.. Again it said hypothyroidism increase meds, still struggling on 50mg ..gp decrease me from 50mg to 25mg until I see endo.. im really bad with inflammation loose runny stools and cramping on the teva T4 I want off it so bad.. My next were done on July 31st but I have not got them yet.. But I can't stay on this stuff much longer, I look pregnant!,.. Have really inflamed bowles my stools are very loose and look like brandy coloured jelly.. 😣
it's good you are getting a file together ... if i can make a suggestion: When presenting your information to a consultant (or the forum) people need to see results presented clearly in a chronological time line ,ie;
date and dose and results. all together.
then date of any change in dose.
then next set of bloods after 'x' weeks on that dose .
with just a very brief note on symptoms / or reason for change..
all too often your posts on here just mention some isolated results that you remember as being important to you ,buried in a long confusing ramble, often with different details from the last time you gave the same information, with no clear time line for anything.
This way of communicating makes it more or less impossible for anyone with limited time to see what is going on.(including consultants)
So they get confused / frustrated / spend all their time trying to get to the bottom of the inconsistencies in the incomplete information you have given them. Or worse they advise wrongly based on incomplete/ inaccurate/ out of date information.
And you run out of time in the appointment to ask for what you really wanted to know ... ie. your latest results .
Which is no help to you ... so to make the most of any future appointments /posts. make sure they have an accurate / concise list of previous results/ doses in chronological order .
And make sure you have a short list of what you want to know from the appointment. .
To be honest my surgery have been doing sporadic bloods from 2020, you should see my print outs🤦♀️ it's OK getting one set like those done on Sunday 31st, but I requested all thyroid bloods to be printed so I myself could work them out... They are awful with some duplicated so I got confused with that (brain fog) until I noticed the same dates🤦♀️ some results are cut off and appear on another pages, the dates are not in order and it's hard to sort out, some go from sep down the page then end up in May, I'm thinking of asking for them to be re done in the right date order, because trying to put them in the plastic sleeves in date order is impossible, I think the lady who did these at the surgery just printed a load off as the come not in any date order she was not best pleased I asked for them 🙄 my son gave up so did hs girlfriend, she said get them re done there all over the place 🤦♀️
Sod trying to organise the printouts they give you , the NHS will never be able to get them to come off their computer system in the right order ,and there will always be duplications etc it's a nightmare. I know exactly what you mean .... i think it took me several weeks just to put mine in the right order after i got all my results from 2002
Go 'old school'... get a book of A4 paper and a pen .
when you find a result with a date, copy it down carefully and check it twice.
leave big gaps above and below each result so you can fit others in the right place when you find them.
eventually you will have an accurate list in date order that you can write up neatly and keep safe.
and going forwards , always keep your own notes as you go along .... get a diary just for your thyroid .... make a note of the date of any dose change ... reason... date / time of test /time of last dose..... how you felt on new dose week one / week two ....... etc.
Great idea tattybogle👍 my surgery is usless, i know when I go on the liquid levo I will wait 7/8 weeks for next bloods, I always give them plenty of warning before my 7/8 weeks is up.. I did this over 2 weeks before my endo appointment on the 3rd Aug... Was told we have no appointments for blood draw.. Well I said Im sure the endo will need some up to date bloods done... Upshot I had to go to my hospital on a Sunday morning 31st Aug.. I know it will be a pain trying to get the re tested 😤😤
But most of the papers/case reports discuss overt (often entirely untreated) hyperthyroidism, even thyroid storm. Which can have severe consequences.
A very different thing to a mildly elevated T3 level as in (so-called) subclinical hyperthyroidism or the T3 levels which would occur in someone taking T3 responsibly.
If you add "subclinical" to the search terms, you get fewer papers and more which discuss subclinical thyroid disorder (both hypothyroidism and hyperthyroidism).
I was very hyerthyroid in hospital in thyroid storm my T4 was 100 and my T3 was 39.6 TSH undetectable that's what the doctor told me he was very concerned as I couldn't stomach the 2 anti thyroid drugs my gp had me on, he knew I was struggling in keeping the drug down ( I'm lactose intolorent and have colitis) but he insisted I just get on with it as the side effects would ease, 4 and a half months later I was rushed to hospital, as I said in thyroid storm, my heart actually had no ill effects from the thyroid storm thankfully ( only calcification in LAD found that out in 2020 after noticing very high calciums over a number of years, anyway I'm sure as you say a person is not going to have really high levels of T3 taking the drug responsibly as I did, my T3 never went over range only my TSH was 0.05 so gp panicked and said I was over medicated and this was causing my symptoms and I should consider coming off the t3 eventho I was not a good converter on t4🤷♀️And your totally correct in what you say about untreated hyperthyroidism causing heart problems, my hospital doctor was fearful of this when I was in thyroid storm, I had a heart monitor on but I think its a bit different when in full thyroid storm to over medicating with T3, for one thing how much T3 would you need to take for it to have a bad effect on your heart? I have heard of some people taking it to loose weight, and others using it as a stimulant probably abusing it, I don't think that's the case with us suffering with hypothyroidism tho helvella.. Think gps and endos just jump on this as a way to get you off the expensive drug🤷♀️
In Appendix A to my Vade Mecum, there are links to several sources of information including, for example PubMed and its User Guide! And Europe PMC.
helvella - Vade Mecum for Thyroid
The term vade mecum means:
1. A referential book such as a handbook or manual.
2. A useful object, constantly carried on one’s person.
Please don't get put off by the number of pages!
Nor by the fact it is targeted at people interested in thyroid issues. Much of its contents could be of use to many involved in health issues. Things like abbreviations, lists, general reference information.
In particular, it is not intended that you sit and read the document. Just that you download it and know you can look things up.
If there is anything you'd like me to add, let me know.
Not everything is in this one document - my major medicines document is still separate!
To be quite honest slowdragon I've given up on that appointment I had on Wednesday with the endo.. She never even got my blood work up I had done on the 31st July, ( I will pick a print out up next week when I see if the liquid levoroxine prescription as been filled.. Not holding my breath, as it took 6 weeks to get the T3) I'm just about out of steam now 😔I'm exhausted going back and forth to the toilet through night, coupled with the thirst, headaches, nauseated felling sick and actually vomiting 🤢 bad bone pain with weird vibration, I feel just about done with this life.. The only good thing on the horizon is my son insists I see a surgeon and insists he's paying for it.. Bless him 🙏
How long have you been on 60mcg T3 before blood test?"
hi Slowdragon ... i can't see where you found them from , but I'm pretty sure those are not Birkie's results and i don't think she's ever taken 60mcg T3. she did used to be on about 40mcg T3 .... but she's currently taking just 25mcg levo.
Recent history ... Birkie was taking 40mcg T3, but due to severe symptoms endo reduced to 30mcg T3 :
results on 40mg T3 ........................TSH 0.05 / T3 6.6 (3.1-6.8)
results after 8wks on 30mg T3.... 14th March 22:TSH 23.47 / T3 1.5 (3.1-6.8)/ T4 2.50 (11-22) very odd results , however , there was a period of time taking no T3 at all between the 40mcg and 30mcg dose when Birkie felt better from some symptoms , which returned when started T3 again.. details here: healthunlocked.com/thyroidu... .... the test was 8 weeks later , so this time off shouldn't have affected these results , but i wonder if perhaps there was another period of no meds before this test ? .. birkie had another unexpectedly high TSH of 15 last year and it turned out there was a gap with no meds for several days shortly before test which we weren't aware of when answering.
birkie then offered to stop T3 herself and go back on levo to try and prove it wasn't T3 causing her symptoms :
after 7wks on 50mcg Levo (teva)... TSH 6.4
then GP reduced to 25mcg Levo (god knows why!) ... we haven't seen the results for that dose yet, tested on 31st July.
Endo has now prescribed Liquid Levo to try . not clear what dose has been prescribed.
How long have you been on 60mcg T3 before blood test?"
hi Slowdragon ... i can't see where you found them from , but I'm pretty sure those are not Birkie's results and i don't think she's ever taken 60mcg T3. she did used to be on about 40mcg T3 .... but she's currently taking just 25mcg levo.
That might have been the weird gremlin issue…someone else’s post detail appearing in Birkie’s post
Yeah the little gremlin.. 😂 I Did get to 40mg T3.. Been on T4 since May.. All symptoms remain, so if it was the T3 causing the symptoms they would had resolved by now.. 🤷♀️
Thanks for that info tattybogle 👍 I can see the results now.. I've been preparing my thyroid file for the endo to look at my results ( needn't have bothered she wasn't interested) so I've put those papers some where in the file which is in the next room..,🤦♀️.. Yeah I thought the march 22 ones look odd and I can assure you I never missed a dose eventho they give me bad bowel pain.. But the TSH at 6.4 had no T3, T4 so I don't know what my conversion was like, I just want off them now.. Hopefully the liquid levoroxine may be better on my stomach and I might get better thyroid hormones 👍
I don't eat carbs.. Bit bad with sugar tho slowdragon 😔 but when I came off teva all together the metallic taste went, got bk on it and it came bk😔.. So it will be interesting to see if the metallic taste goes as it did before, I can't see it having any effect on my ongoing symptoms the peeing constantly, flipping utter thirst, bad headaches, bone pain and vibration, that's a weird sensation I get it in the large bones and in my public bone very much like when you sit on Yr mobile phone on vibrate, when I first noticed it I actually thought I WAS sitting on my phone but it was on charge on my table 😂.. Anyway my son is now paying for a private appointment with a surgeon 👍
What about the constant trips to the toilet tho and utter thirst, vomiting, the last bout I had in A&E server bad headache, vomited shaking the blood test came bk as all thyroid bloods in range but calcium was 2.67...range.. 2.10.. 2.60.. Let's hope this stuff is liquid gold slowdragon 👍
Told I was not diabetic HbA1c. test in range.. 36..ranges.. (20.00..41.00) ..my B12 is 398..ranges.. (179.00..771.00) been on better you B12 oral spray 1200ug for around 3 months or so now.. Vit D is 43 take 3000iu better you oral spray 3 pumps.. On that since sep 2020..And magnesium Glycinate 200mg one capsule with food..magnesium is 0.86..ranges (070..1.00) My ferritin is 45..ranges (23.00..400.00)..foliate 3.4..range.. ( >2.50ug) my cortisol was 178 range (172.00..4.97) I had that short synthetic test it came bk normal, I'm not good inturptring mineral and vitamins 🤦♀️
Yes the vit D is with k2 better you 3 pumps 3000iu 1000iu per pump.. Remember you recommending it got it off amazon 👍 but because my calcium is high end and been over 2.67 in March 21..ive to be careful with the dose.. On magnesium Glycinate 200mg per capsule, vit D hadn't moved much it was 29 in sep 2020 got prescription off endo it was them very blue tablets fuciccin can't spell it, I threw them out got the better you oral spray.. It went to 53 but now it's gone down to 43 I think I have an absorbtion issue, but also I've been vomiting a lot to😔
It was some months back now possibly last year when I mentioned Diabetes Insipidus to you on a previous post.
I have a relative with this disorder. Her symptoms are similar to yours; continually back and forth to the toilet, worse at night and usually very thirsty.
If you haven't already I do think you should mention it to your GP. Diabetes Insipidus is not related to regular diabetes apart from having the same name. It is not a common condition. I'm not saying you have this but think it's important to mention it to your GP.
I can remember you telling me that.. Sorry but the brain fog must have been bad that day as I know I've not got diabetes was tested it was negative, but re reading your post you say its not like diabetes 🤔 thank I will read the links you put on Yr post, is it a blood test that diagnoses it or urine? Thanks again ❤️
I believe you have a water deprivation test in a hospital setting. They measure your urine output. Not sure what the other tests are though.
I'd not heard of it until my relative told me she had it. But it is confusing as it's not diabetes but has a similar name. I think there are suggestions for a name change of the condition as it's not related to diabetes and it causes confusion.
I have those urine dip sticks at home.. My gp recently wrote saying I have chronic kidney disease but it is under control, I dip my urine when I feel very unwell like weeing a lot ect so you can imagine I've been testing a lot since 2020 pth over range calcium over range.. I drink buckets full of water my urine sometimes looks like water😣 I know you have to be careful not to drink to much to.. But the only test that is off on the dip stick is specific gravity it doesn't matter how much I drink its alway way out, wonder if that as any bearing because specific gravity is dehydration 🤷♀️
I knew of diabetes insipidus (coz I have constant thirst) but having just had another read about it I didn’t realise it comes in two forms, one of which happens with high calcium levels that can make the kidneys dysfunction.
Our body's water level is regulated by ADH (antidiuretic hormone), aka vasopressin that's produced by the hypothalamus but stored in the pituitary and secreted when needed.
Cranial diabetes insipidus is when insufficient ADH results in excessive urination usually due to a pituitary issue, and nephrogenic diabetes insipidus is having adequate ADH but the kidneys can not concentrate urine due to impaired renal cells and so signal for excessive water.
You said your GP has just noted CKD so ask him to investigate for nephrogenic diabetes insipidus as there can be drugs given that help relieve the thirst & decrease your urine output. You will need sodium measured and a urine osmolality test that is more precise than the urine specific gravity.
The thirst is present in both forms as a compensatory measure to offset huge water loss via urine, and vomiting is listed as a symptom of nephrogenic diabetes insipidus. Neither forms of diabetes insipidus have anything to do with blood sugars or the pancreas.
I had a look into those conditions yesterday and were very interested, apart from my parathyroid hormones going over range my calcium from 2015 to now ( only results my surgery gave me) are..
2.60
2.61
2.72
2.89
2.67
2.63
I had 2 over range in 2020 at 2.61 2.68
My calcium is now hovering around 2.59, 2.54, 2.52 ..bar one time in March 2021 when it returned to my normal resting rate 2.35 it as remained at the top end or over range, along with the symptoms I mentioned,
My sodium on the last lot done were
Range for sodium 133.00...146.00
Feb 2020... 143.00
Nov 2020... 142.00
——-------------------
Aug 2021.. 138.00
Nov 2021.. 139.00
Feb 2021.... 140.00
----------------------
eGFR.. Ranges.. 90.00...120.00
Nov 29th 2021...(59)
June 15th 2021...(64)
Aug 23rd 2021...(53)
---------------
Creatinine.. Ranges.. 49.00.90.00
Nov 29th 2021...(92)
June 15th 2021..( 86)
Aug 23rd 2021.....(101)
--------------
Albumin range.. 35.00..50.00
Nov 29th 2021 .. (46)
June 15th 2021 .. (48)
Aug 23rd 2021.. (52)
This Is why the gp wrote saying I have CKD its only taken the over 2 years to come to this conclusion as my renal tests going back years show ranges similar to the ones above 🤷♀️
I honestly don't know what all this means, you seem to have better knowledge of this than me, I hope you don't mind me showing you these results 👍💖
Your sodium levels look quite high. If it goes over range it is very serious.
Your creatinine is high or over-range. This is a waste product that is measured to see how well your kidneys are performing. The creatinine result (together with age, size, gender, ethic group) is used to formulate your glomerular filtration rate (GFR which indicates the rate our kidneys are filtering each minute. It reduces with age but a healthy level is more than 60 -90. Anything less is classed as CKD.
Albumin is high because proteins end up in the urine when kidneys aren't working well.
Kidneys can be effected for a variety of reasons such as high BP, high cholesterol, excessive use of NSAIDS, etc, etc as well as elevated calcium levels. I would definitely be asking for further investigations and/or strategies on how to manage these symptoms with perhaps another GP? Whatever, you shouldn't just be left to cope with this.
Thank you for looking through all the stuff I posted❤️
Firstly in the letter the gp sent me.. ( never received an appointment to discuss this face to face 😤) it says what you mentioned about age, my gp says my age is contributing to this condition ( I'm 60 by the way) and as its under control I need only have a renal blood test every year!
I can't take aspirin, NSAIDS, antibiotics they upset my bowles, BP is OK, I have a blood pressure monitor at home and check it, only thing different is top end calcium over range calcium and over range parathyroid hormone ,my parathyroid hormone is sitting at the top end.. Range 1.60...6.90....my last 2 were... (6.6)...(6)
Ive had good discussions with tattybogle about primary hyperparathyroidism and my endo and gp saying I don't have it, but it is obvious something is going on kidney wise, I've had many kidney stones, last stone passed was 2019 second was 2021..my kidney scan showed scaring on right kideny indicative of passing kidney stones, but because no stones were visible on the scan.. ( no because I passed the bugger) my surgery have said the condition is under control, I have no confidence in any gp within my surgery 😔 I'm drinking loads because I feel dehydrated all the time, the advice in the letter was keep your fluids up, I am but I'm peeing for England 😔
'Firstly in the letter the gp sent me.. ( never received an appointment to discuss this face to face 😤) it says what you mentioned about age, my gp says my age is contributing to this condition ( I'm 60 by the way) and as its under control I need only have a renal blood test every year!'
Except it's not. If you feel desperately dehydrated all the time no matter how much you drink, your sodium & calcium levels are relatively high, kidneys aren't coping, you have a need for constant urination, you have been admitted to hospital once, and you are failing to sleep because of the constant urination, then this isn't controlling the condition well.
Ask for further help. Your age might well be contributing to these conditions but it isn't the sole cause and we shouldn't be written off just because one is 60 years old!
Maybe if you detract from the obvious abnormal bloods and focus on your lack of sleep because you are peeing all night, they might start some further investigation. Tell them you are up & down literally all night & the sleep deprivation is unmanageable. Tell them you aren't coping well because you can't leave the house (for instance) or lead any form of normal life because of the regularity & urgency of needing to drink and pee vast amounts.
They already know about my constant toilet trips, drinking for England, lack of sleep ect.. It doesn't phase any gp I've spoken to, they just tell me it's age.. One gp actually saying to me over the phone never spoken to any gp face to face, that his creatinine level is the same as mine and he is 62 so their is no need to take anything further, just keep up my fluids.. As I say don't have much faith in any gp helping me.. I seem to be getting nowhere with the parathyroid thing or the kidney thing.. But I soupose I should try again, mention the diabetes insipidus and see if I get anywhere, I am going to a surgeon ( private appointment for the parathyroid thing) but maby mentioned the diabetes insipidus to him also.. 👍💖💖
And thats the trouble. We can have some of these abnormal bloods & still live perfectly normal lives with maybe an extra trip or two to the toilet but are you sure you are conveying just how frequent they are and the impact this is having on your life, and thats without all the additional awful side effects you are feeling.
It's great your son is arranging for you to see a private doctor but it will be annoying if you end up having to pay for expensive investigative tests that should be done on the NHS. ☹️
It will be interesting to see what the private doctor has to suggest. Have you an advocate going with you to ensure you articulate exactly how you feel? It can be helpful to write your symptoms down as well as present your abnormal bloods, etc.
Hi Birkie. I'm sorry your experience with the Endo has been so poor. I, thankfully, got a proper diagnosis last year (after 25 years of misdiagnoses and all the frustration and anger that caused). Long story short, my hypothyroidism and hyperparathyroidism have been diagnosed as secondary, with pituitary disease being the cause. I now take various meds to balance the hormones my pituitary gland either struggles to produce or produces too much of. Has your Endo tested all your pituitary hormones to rule out pituitary disease? It would certainly explain some of the other symptoms you've mentioned. (All three Endos I've seen previously never bothered to.)
Hi Hormoan❤️Snap I've seen 3 endos also🤦♀️ I've never had my pitruitry tested but I did bring it up once but we're told it's ok🤷♀️.. Thank goodness you eventually got your diagnosis 👍 although 25 years of that must have had an effect on your health and your mind, 🤦♀️it took my surgery over 12 months to diagnose my graves disease, I honestly thought I was dying, and my son was sure I had cancer as I'd lost so much weight. Secondary hyperparathiyroidism requires a low calcium mine is at the top end and as been over a number of times, I am on 3000iu of vit D but my vit D is not moving much, was your calcium high end or over range because if it was you don't have secondary, that's the mistake endos make... Along with a lot of others😤
Hi Birkie. How absolutely awful. I'm so glad that you finally got a diagnosis. The worst part is not having a diagnosis and being pushed from pillar to post, isn't it? I didn't tell you that I also have a pituitary adenoma (thankfully diagnosed 25 years ago) and am going through perimenopause, so you can imagine the fun I've been having. As the saying goes, what doesn't kill you, makes you stronger, and my God, I know that - mentally at least - I can damn well handle anything. I'm sure you feel the same way.
I've had to do so much research over the past 25 years to try and identify the cause, and support the symptoms my doctors were failing to. It's when I entered perimenopause that it just became too much for my body, and I would go to bed at night, genuinely wondering if I'd wake up the next morning. So, I had various blood tests done privately (I knew what basics to test for, pity those doctors didn't) and remember bursting into tears when I got the results, because my results were even worse than I expected. I actually felt heartbreak for my body, stunned and humbled that it was managing to function at all. I shared the results with the Pituitary Foundation, and their Endocrine Nurse immediately confirmed that I definitely had pituitary disease and needed to get myself to a pituitary clinic.
You're right, my body has taken a beating - that's what makes me angriest - but I'm being patient and gentle with myself, recognising that the journey back to my "old physical self" is going to be a very long one, but at least possible now? 💛
Right, to finally answer your question (apologies for waffling 🙃), my Endo suspects that my calcium levels are 'naturally low' and only in the normal range because of my lifelong supplementation. My Vitamin D isn't moving much either, like yours, so I'm on 20,000iu 3 x a week now (being monitored closely).
I rang my surgery up for an appointment to take bloods for the endo was told their are no appointments they put me over to the hospital for them to take the blood, she also said our appointments are for emergency only for the next 2 weeks😤 this is the second time this has happened, my surgery seem to be doing emergency appointments, I asked if my last test for thyroid bloods being dire would not come under an emergency.. I was told "no" as my son is paying privately for an appointment with a surgeon at Newcastle, I'm going to see what he says about my over range parathyroid hormones and over range calcium, and question him on my symptoms, then I will bring up the diabetes insipidus, I honestly don't think my gp or any gp at my surgery will listen to me.. 😠 I'm so sick of them, I've sent 2 letters one by recorded delivery and email the practise manager and they have replied to none.. 😠
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