Gp decrease my t4 meds because of bad side effects, from 50mg to 25mg in may until i see the endo in Aug, saw endo aug 3rd, prescribed liquid levothyroxin.
my bloods were taken on 31st July, before appointment, i knew these bloods would be bad.. I mean 25mg is barely doing anything for my thyroid hormones,
Got a phone call from the surgery on Friday to say i need to speak to the doctor about my thyroid results! I tell the receptionist i am awear my thyroid blood will be way out of range ( hypo) but what would he recommend, he would tell me to up my medication, which i can't due to bad side effects gp KNOWS this!
I told the receptionist im still waiting on the endo to send the letter to my gp so i can start on the liquid levothyroxin, her response " give the endo another week to see if the letter arrives at the surgery"
And I will make a note that you are ok with the out come today!! And dont need to speak to the doctor.
Honestly 😩😩😩😩😩
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birkie
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I have every printout for bloods, my last TSH was 6.4..that was in May.. I had the bloods done at the hospital on the 31st July and have been trying to get them since they were done.. But told they couldn't access them as they were on the hospital system ( a load of crap) at some point my gp got access, hence the phone call, I asked for the results over the phone but with the conversation with the receptionist I fgot to get them,
I'm getting them tomorrow, I know they will be dire, the gp decrease me at the end of May, but there's nothing I can do until I get on the liquid levothyroxin 🤦♀️ it's just so bad how we are treated 😩😩
Talk to each other? Doubt they do. They don’t like taking to patients either (prefer screens & blood test results) and they likely say they don’t have time to discuss cases between each other.
Doctors think their job is to look a the (single) issue & address that - as easily & quickly as possible, then deal with “next”.
They are wrongly under too much pressure which means no they don’t have the time liaise as they should.
You have to ensure & follow up. Phone endo secretary & leave messages ect.
I find letters are simply logged on your record by admin & you have to be the one to remind them of the information and what should be done next.
I've rang the endo dep several times to find out if the endo as sent the relivent letter to prescribe the liquid levothyroxin, everytime I get a message saying no one is available to take this call.. Or it just rings🤷♀️ I've spoken to my surgery to, but the receptionist just gave me the endo dep phone number saying I've to keep trying, just wait another week to see if the letter come down 😠.. We as patients seem to be doing part of the gps jobs for them... 😠😠😠😠
I would go to the Endo’s office in person and obtain the letter … what a mess and just a stupid setup that Endo’s has to write a letter to your doctor so the doctor can prescribe thyroid medications and everyone should file a petition or something to fix this issue.
I can't believe in 2022 they are slower at sending down relivent information to your gp.. In the good old days it was either a letter done by post with a stamp, or a courier, now we are told its the press of a button and hey presto the email appears in you GPS in box... Are they just getting lazy? Or do they rely on today's technology to much, like... Ho I'll send that tomorrow it only requires my secretary to type it out then press the button to send 🤷♀️ one wonders what's going on with the nhs lately 🤔
When no one is accountable for anything you the patient suffers the most …. This definitely needs to change if you see the Endo and the Endo says you need meds then they should prescribe the medication not a letter to GP so they can prescribe meds which seems fine until like now its not…. This part of your system is broken and needs to be fixed Im surprised people don’t complain.
Well I'm sure they do Batty1👍 I went on to our surgerys site where you can leave comments on how you were treated at your appointment, I can tell you, it wasn't nice what I left.. No swear words or anything like that, just told them how badly I'd been treated and how incompetent they were😂 I saw other comments complaining about the receptionists attitude ect, The comments were no longer up the last time I checked 😂.. Bit like you tube if they don't like what you post they just take it down.... Cowards😠
I’m agreeing with what your saying,I will sign,, hope your not too long in getting sorted, I’m a bit in the same boat ,have been on a trial for liothyronine went to get prescription and drs won’t give me it I was without liothyronine a week or more they said they were having a meeting this Thursday about it , hospitable has now given me two weeks worth but it’s a headache I don’t know where I am , anyway sorry for the rant I hope you soon get sorted
It's OK to rant, I've had a field day today on here👍 thanks everyone who as replied to me, ❤️
How can we be expected to get better if we can't even get the medication on a regular basis, choping and changing us because our pharmacy can't aquire the thyroid medication because of distribution issues does not help us!!
I have said this before on here... They would not do this to a diabetic patient, and rightly so... But why are we as thyroid sufferers the poor relation? We always get the sticky end of the stick.. We suffer just as much.. Or even more because diabetic patients get there insulin on a regular basis 🤷♀️ it's like we don't matter 😠😠😠
I know what your saying , I suppose having a good rant gets it of our chests , but as you say we don’t seem to be supported very much by drs , only on here they are very helpful, hope you get yourself on the mend ,
Long story.. Gp said all my symptoms were due to T3 teva..
Worst symptoms
Constant toilet trips to urinate.. Phpt symptom
Utter thirst......... Phpt symptom
Bone vibration /pain... Phpt symptom
Server headache
Dehydrated even when drinking loads.. Phpt.. Symptom
Fast heartbeat sweating
Shaking
My thyroid hormones were OK at A&E,
Because gp insisted it was all down to T3, I told her I would come off T3 for 7 weeks to show the symptoms have nothing to do with T3, I could only go back on the dreaded t4😩 I just about survived the 7 weeks on the T4 teva, bad side effects to it, blood results awful.. my symptoms remained but gp wouldn't put me back on T3 teva, she made an appointment for me with the endo, 3rd Aug, the endo as now said I can try liquid levo, (still waiting on this) also gp only does TSH when on t4😠.. So when I eventually get the liquid levothyroxin I can start again with new bloods, I will be very annoyed tho if they don't do a full thyroid panel (I have no thyroid) and have told my surgery time and time again to do all 3🤦♀️
Oh birkie this is a disgrace....your medics sound clueless.I must say I've often wondered if they talk to one another ...or just pick up what they can from on screen notes then add 2+2 and make 3!!
Would you consider private testing because it seems the only way you are going to get a comprehensive picture of what is going on.... instead of this appalling pick n mix treatment you've been subjected to.
Because gp insisted it was all down to T3....
Huh! A bit obtuse.
So what exactly did that mean!!
Meantime push for tests... ensure at least TSH, FT4 and FT3
I had dreadful anxiety and tearfulness on Teva Levo and changed to Mercury Pharma and everything calmed down. My GP puts it on the prescription now that it has to be that brand. Hope you manage to get hold of the endo! Would it be worth going to the endo department at the hospital and telling them you’re in dire need of the prescription?
Apparently it's the letter the endo is writing out to my gp telling them to prescribe the liquid levo, I spoke to my surgery on Friday, she said just keep trying the endo department 🤷♀️ but I've just found out that when the letter comes to the surgery there has to be a meeting to see if the surgery are willing to take the cost of this prescription 🤦♀️ I wonder if they would do the same with a diabetic patient, "ho just hang on, we know you are ill with a condition but we need time to have a meeting to decide weather we give you this medication or not!! You just can't make this up!! 😠😠
Oh that’s appalling! I count my lucky stars that I’m with an excellent surgery in Harrogate and when I decided to switch back from NDT to mainstream drugs, the endo put me on Levo and T3. I thought I’d have to beg, but no. I’d still be on NDT if not for the cost and problems with brands changing factories. Good luck!!
birkie I have come to wonder if we are being set up to fail. T3 even if you are lucky enough to try it, in usual NHS fashion, you get little or no instruction how to use it. It’s not a new behaviour from the NHS but particularly insidious in our case. Failure of T3 experimentation means that less and less of us can be offered it and therefore eventually an excuse to completely abandon it. I think as you imply, you must start over again with that vital waste of time. I feel for you. Take it easy - very difficult. Me too.
I was on T3 teva in 2020, endo put me on it when I couldn't take the t4 not absorbing/converting, T3 restored my T3 level and TSH was around 0.05 I felt OK apart from a bad metallic taste, then in April 2020 my calcium went out of range with out of range parathyroid hormone and endo wrote saying I probably have primary hyperparathyroidism, all my symptoms pointed to this but after one normal blood test the endo discharged me, but my symptoms remained still ongoing, but my gp and endo have blinkers on as they cannot see I have a bad relationship between parathyroid hormone and calcium both at the top end, and my calcium bounces in and out, but gp blames T3 meds🤷♀️ they are useless and in my opinion need to go back to med school😠
Aye birkie but what would they be taught? The top guys in the UK are still preaching TSH and Levothyroxine and particularly fending off us troublemakers. I don’t want to fall out with anyone but just economics alone, ‘keeping people - usually women’ ill makes no sense at all. I was fed, with no doubt very expensive drugs for many years for an illness I did NOT have. They knew I did NOT have it but persisted until I gave up - and got forgotten about. Now I have an illness that they know I have and won’t treat me optimally. It defies comprehension. So not getting treated for what they know you do have hypoparathyroidism (or at least that is what someone has told you and ignoring the patients reports) falls very much into that category. Why are you not being treated for something they know you have and mucking around with something which was helping you? Blaming T3 is the current blame game. I hope you persist with attempting to get an explanation. Hard but necessary in these difficult times. Best wishes.
I myself got a diagnosis of early onset of primary hyperparathiyroidism in 2004...yes in 2004..and after one normal blood test I was pushed aside telling me I was now cured, primary hyperparathiyroidism doesn't work like that, I know this now, after being diagnosed a second time in 2020, I did my research on it joined a parathyroid group and where amazed at how little endos and GPS know about this condition, goodness they don't know much about thyroid conditions 🤦♀️ but I never recovered in 2004 and became more ill, I was given the old diagnosis of chronic fatigue syndrome, fibro, ME.
And given copious amounts of drugs like you I no doubt needed 😠 because having learned more about primary hyperparathiyroidism I'm sure I've suffered with this condition all along, as going bk in my records I've found loads of high calciums.. 2.89,2.75,2.68.2.69 and so on my gp never told me about them.. And stupidity I never inquired, I know more now and get all print outs for my blood work eventho my gp receptionists hate me coming in for them🤣 I'm due to pick some up tomorrow, can't wait to see their faces 😠😠😠
It's the only thing keeping me going.. If I didn't laugh I'd cry.. When I spoke to the endo recently I showed her my over range parathyroid results and top end calcium, saying does this not indicate normocalcemic hyperparathiyroidism?PTH RANG.. 1.60..6.90)
CAL RANGE.. 2.10..6.90)
—---------------
PTH.. 8.1..CAL..2.51
PTH..9.5..CAL..2.54
Definition of normocalcemic hyperparathiyroidism is
A elevated parathyroid hormone in the face of a normal or top end calcium, she said no those results don't show that condition, 🤣🤣 I laughed and asked if we were looking at the same results ... Dumb endo 😂😂😂😂
I can’t pretend to understand the ins and outs of hyperparathyroidism. It’s hard enough getting my head around hypothyroidism but I can validate that THAT is Sh1t. Yours sounds a lot more complicated. Still you do seem to have a handle on it, despite getting less than no help! I hope to goodness you find somewhere to turn in this very very soon.
Going private, with the primary hyperparathiyroidism thing, my son is paying, I have an email of a great surgeon in Oxford, so going to fire of that email today, because if I wait for the nhs to do anything, I'd be 6 foot under and still be waiting on a referral letter 😏💀💀💀
I know this was months ago, but maybe it helps someone. In the beginning of my thyroid meds 23 years ago, I went through a phase of sleeping pill withdrawal (at least I think it was). During that time my thyroid labs went crazy, FT3 was on top of range or above, FT4 was lowest possible. I had all your symptoms and was tested for diabetes insipidus, as constantly peeing (every 15 minutes), racing heart (180 and betablockers did not get it down), dehydration of course with unquenchable thirst plus many other symptoms. The diagnosis was not clear, as they simply did not believe me that I really had drunk nothing during the thirst test in hospital. And I did not! After this I was traumatized and do not trust doctors any more. My potassium was out of range, so I started taking that and it helped. But took me almost a year to slowly raise my thyroid meds in installments of 6,25µg. What I want to say is that labs like that can be really bad for your body.
Thanks for replying 👍 I spoke to a lady on the parathyroid site about diabetes insipidus and yes the symptoms can mimic a parathyroid problem.. being primary hyperparathyroidism or normocalcemic hyperparathyroidism or normohormonal hyperparathyroidism.
I have had some really shoddy treatment by the NHS over the years, took just over 12 months to Diagnose graves which was thyrotoxicosis 🤦♀️ lost my thyroid, in that time before diagnosis everytime I was rushed to hospital with tachycardia ( caused by hyperthyroidism) I was always asked if I was a diabetic because I was sweating had a marked tremor in my hands and my heartbeat was off the scale.
I of course said I'm not diabetic (I'd purchased a glucose monitor because of my symptoms and my gp saying its the menupause not your thyroid, I did think maby it was diabetes but every test I did it was normal.
So everytime I was in A&E they did the diabetes test, it got to the point where I just rolled my eyes when they came in with the moniter, one A&E doctor telling me off for not taking my insulin and I deserved to feel ill😠😠 I leaned over to him and told him that test will be negative.... I'M NOT A DIABETIC!!!
sure enough like ever other time it was negative, no apology just when her heart returns to a normal beat she can be discharged.
I asked my endo about diabetes insipidus but were waved away saying its your chronic fatigue, fibro, (diagnosed in 2005 with this) I've been fighting the NHS establishment since 2020 when my calcium and parathyroid hormone went abnormal twice and again endo gives me the diagnosis of primary hyperparathyroidism (first diagnosis was in 2004 of primary hyperparathyroidism, can you see a patten here because eventho my endo and gp can't I can, eventually my son paid for me to see a private parathyroid surgeon who as identified a nodule in my neck stating it could be an enlarged parathyroid gland but I need a pet chloride scan in Liverpool.
But here the kicker I can't afford the £2500 it would cost for the consultation the scan, bloods ect so I've been put back in to the NHS system and I'm still waiting on that scan😠
I've popped into my surgery and rang(really hard to get through tho) they just keep telling me they have the consultants e mail but so far have done nothing, I have not received a letter from the clinic in Liverpool as yet.
Now my gp doesn't want to do any further blood work as my last lot in January came back in normal range but both at the top end of normal pth, cal.. not a good relationship if both are at the top end of normal, but gp is blind to this as is the endos they want pth and calcium to be sky high before they will do anything nhs guidelines or as I call them nhs keep them ill lines😠
I think they used to speak to each other. When I did my nursing training (20 years ago now, eek!), I did a stint “on the district”. The practice held regular face time face meetings, the doctors conferred about patients they were concerned about (obviously it was all held in private).
I suspect these days, what with there being far fewer full time GPs, the rise of e-consults plus a huge number of locum GPs, a lot of that camaraderie has gone. I can imagine that junior GPs don’t feel very well supported and the more senior ones are probably completely overloaded. I’m not defending the situation—it isn’t right that things are so not-joined up and disorganised—but I bet there’s never been a worse time to be a GP. From the outside looking in, the pay looks good, but if your working life is utterly sh*t, pay alone isn’t going to make things better.
I’m in danger of writing something political which we really mustn’t do here in the forum…
Really hope they get this sorted out for you soon Birkie. xx Goodness knows you’ve had to suffer a long time to get to this point.
Hmm - if it’s like round here there are so many locum doctors and doctors who work part time hours that I doubt if they even know each other let alone have a chance to talk to each other about patients.
Hope you are able to get this resolved soon, sounds awful for you. I’ve just been reading about Addison’s and adrenal insufficiency, have you had your cortisol tested? The symptoms you mentioned above are all listed, might be worth checking that too. Sending you my best wishes 🦋💚🦋
Yes had the short synacthen test as my cortisol was what they deemed low at 178..my test showed I was producing cortisol, normal results, I Trully never got any good feedback from the gp on this, he only said your results are normal as you produced cortisol, this test was performed in 2020.
Recived a letter from my surgery about 3 weeks ago saying I have CKD but it's under control eventho my eGFR is not normal and my creatinine is not normal, 😔 I Trully despare I'm left with this surgery as moving is not an option 😔
This 💩 show is a lack of thyroid /parathyroid illness by several gps at my surgery, they jumped on the t3 meds to justify my symptoms, which have nothing to do with T3 more to do with primary hyperparathyroidism, for which 2 endocrinologist told me I probably have this condition, but hey I get a normal test back in September 21 and "boy your now cured" primary hyperparathyroidism does not work like that, since then my pth had gone up again to 6.6..range.. 1.60..6.90) calcium is at the very top end to, this is a bad relationship between both,
But gp is on the war path with the t3 even saying to me the endo feels you should not be taking it.. You take it at your own risk!! That's why your feeling so unwell, ( it's a way of getting me off it, and they succeeded as I said I would come off for 7 weeks ( put back on T4) to see if symptoms go.. They have not!! So not T3!!
As for the kidneys, I started with kidney trouble back in 2005 when I got the diagnosis of early onset of primary hyperparathyroidism( again discharged on one normal blood test) then all the kidney stones started ( this is linked to phpt) over active thyroid 2018 diagnosed with graves in 2019 in hospital in thyroid storm, my kidney function was bad back then in 2005 CKD is linked to phpt but my gp and now endocrinologist are ignoring this and focusing on my thyroid medication as the culprit, 🙄 they honestly have no idea what they are doing slowdragon I only know these professionals are slowly killing me🤦♀️
Oh blimey you poor thing. Keep being the squeaky wheel, keep on at them. You sound very unwell. Does your GP surgery offer different GPs or just the one? I had my best outcomes seeing a different GP each time, being on it with the advice here and being clear what I want/need. It’s been so helpful. Wishing you all the very best 🦋💚🦋
Wish I could get a flipping appointment, my last thyroid tests were dire very hypo, (I can't increase the meds due to side affects gp has left me under medicated for 2 months now, waiting on liquid levothyroxin) I rang to get an appointment with a gp, told we are only doing emergency appointments at the moment, I asked if my case was not an emergency, no was the response, again I tried and again got the same answer, emergency appointments only, what the hell are gps doing today 😠
Birkie, please can you tell us what side effects you experience with levo?
I see the NHS has recently produced a self help booklet for patients....basically DIY and don't bother us.
I was told by a receptionist that they are dealing with emergency-only issues.....I asked her what constitutes an emergency. She didn't have a coherent answer!!
I expect you've tried calling first thing in the morning....my surgery offer triage calls at the start of each day.
How could that receptionist possibly know you were not an emergency. I think I'd be inclined to reply to that....
.Well, be it on your head if it turns out that my problem is an undiagnosed emergency case....I feel very unwell.
From the beginning, 😆 have to laugh or I'd cry, I had full thyroidectomy in 2019 surgeon asked if I had any concerns "not about the surgery I say as my thyroid was very toxic and needs to be removed, but what happens when you remove it" "ho you will be hypothyroid then, so we give you T4".. "and their is my concern I say as I'm not good on synthetic medication" don't worry thousands of people take T4 it's very safe,
Out comes the thyroid, in goes the T4.. After around 7 days I started with grumbling sounds in my bowles.. (I'm lactose intolorent and have colitis) as I take more T4 this continues and turns in to bad cramping then loose bowels, I continue, then I get bad diarrhoea then vomiting, with bad inflammation in the bowles, ( look 6 months pregnant I'm 60 by the way😆) this was probably the absorbtion problem, after around 4 months of this with dire blood results and me finding out this T4 contains LACTOSE!! gp is awear I'm lactose intolorent 😠 I get put on T4 teva but still have same side effects gp makes me stick it out, but I find it also contains mannitol a filler that obviously affects me to🤦♀️ finally get put on T3 teva which was OK bowle stomach wise but it gave me a bad metallic taste🤷♀️ but did restore my T3 hormones 👍 it's been a thyroid journey nightmare... Still ongoing 😠😠😠
All GP surgeries work differently so I can only go by mine. I registered online several years ago as soon as they offered it, to order prescriptions, (make appointments - now not available) and can see medical record, test results, date of referrals and correspondence from consultants to GPs. Very useful and worth enquiring about.
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