First; does anyone know if the following words to a GP from a locum Endo is some kind of code - ya know, with the words meaning the opposite to what they appear?
"It was a pleasure to meet this pleasant lady in Endocrine Clinic today who has been taking T3 from on-line website for the last 2 years."
The first innacuracy emerges in the 1st sentence!
I did not say that I was buying T3 off the internet for 2 years. What I said was that less than 2 years ago a Friend gave me some old Liothyronines to try, they were prescribed for her, but were old.
When they ran out, I started a supplement called metavive, containing unspecified level of NDT, very low at 1st, eventually a high dose, ( 130 ) mg. At the time of the last blood draw I was taking that, I stopped taking the supplement 2 days after the draw, and then started on the T3, 5mg, so I had only been taking the T3 for a few DAYS when I saw the Endo!
He then went on to say in the letter that my friend was misdiagnosed and the diagnosis of T3 was delayed.
I never said any of that, I could have said that they stopped her T3 to save £, in spite of her not converting, but I just said they stopped it for a while. He goes on to say that my friend - following commencement with T3 felt a lot better as did I after she gave me some! In fact she had been prescribed T3 for many years, & had it stopped for 2 years, & asked me to find a way to get it reinstated, which I did. She has virtually no thyroid left, as well as low adrenal function. Her low adrenal function is not treated either.
He makes it sound like a couple of health fanatics or crackheads swapping drugs and getting high together! My friend has disappeared, she had worn out knees, thanks to too low thyroxine meds and the consequent obesity, and a broken and irreparable knees, and was going in to have them replaced. I haven;t seen her since.
The next bit is outright lies ; "She complains of feeling tired and lethargic."
I never even mentioned how I felt, and he didn't ask! It sounds as though he's trying to make the case that I am making myself ill by abusing T3 and giving myself thyrotoxicosis, as proved by the low TSH!
More to follow....
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Jenny583
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There is no one to take - they' have all been 'euthanased!
I bought a recording device recently, but I'm so Ga ga now that I forgot to bring it! I only got 1 hour sleep, I was so cold I couldn't get to sleep till an hour before alarm went off. The quack noticed I was shivering & dressed in woolies too. I wonder if that's caused by anxiety?
I tried 'spy recorder' today, it works...
Now for the next exciting episode of this copied in letter.
There are some parts of this letter that are just too far fetched to relate, so I will skip that part, & just move on to the weird science bits. Remember I mentioned in a previous posting that this Endo trashed Thyroid UK, & the real Doctors who advise on all things pertaining to thyroid.
"We went through her previous thyroid functions and it and it looks like the thyroid functions have been within the normal range before she was taking T3. We discussed
her thyroid functions in detail however, the latest thyroid functions show that the TSH is suppressed with a normal Free T4 and T3. I discussed with mrs ____ that because T3 has a very short half , the level of T3 depends on the timing of taking the T3 tablet. TSH however, shows the long term effects and if the T3 levels are high in the blood, the TSH could be suppressed for a lot longer than the Free T3 level itself.
She was concerned that she may have a problem with her pituitary gland and I discussed with her that her cortisol was about 300 about 6 months ago , however , I will arrange a short Synacthen Test for her to clarify that. In addition, I requested her prolactin level, FSH level, LH level and IGF-1 level as well.
The previous Coeliac screen was negative but she said she got the test done when she was not eating a normal diet. She was already eating a gluten free diet and she was right in saying that the test could be falsely negative if she is already eating a gluten free diet .Since she is now eating a normal diet I have requested her
Coeliac screen as well along with U&Es and LFT levels. She was also concerned about her iron levels and I have requested iron studies as well.
We will review her back in the clinic in 4 months time.
She forgot to take the blood test form with her during the clinic appointment and I have enclosed the blood form for the patient to complete the blood tests."
And that last part was a LIE about me forgetting the blood form! I didn't forget it - he wouldn't give it to me! I have no idea what to do with it either, I'll have to phone the general hospital to ask them.
Also I never mentioned the cortisol test that I had done 8 months ago, it was in range, so I saw no need to bring it up. He did, as also he brought up the subject of the celiac.
If I was a cynic, I would be very concerned about his motives for arranging these tests with no discussion with me about the need for me to fast from hormones b4 tests. especially in light of his twisting and reversing, and even inventing my answers to his questions, especially given that I was abandoned with "Thyroid storm" as he called it - many years ago, and given that they have vanished the records...
So what would experts think about this I wonder? would they reason that my borderline T3 up until the recent hefty dose of NDT (130mg) is perfectly fine, and that the TSH of - whatever it is now, (probably) slightly under range - is proof that I have given myself "thyroid storm"? I saw on the screen that T3 is halfway through range at time of 10 days ago test. The highest yet. I am, since last week taking 5mg of Tiromel - to compare with the NDT, but I will have to up the dose soon as I have very important work , meetings, and writing to do this summer.
I still maintain that I am severely depressed, and probably anxious now too, and I believe that that is an important factor that the Dr's (among others are ignoring) but the very drugs that made me extremely ill are the only treatment available here, so if you can't take them, you are up a very muddy creek.
The other letter I got was the date of the appointment with a clinician in October.
Sorry about the rambling rant. You ppl are the only help I get.
No, I don't agree that copying the email far and wide is a good suggestion. There is no need to do that at this point and would be perceived as excessive to say the least, which could go against the OP's valid case to counter factually incorrect comments made by the Endo. It is sufficient to reply directly to the Endo and copy it to the GP, or email directly to the GP and copy to the Endo.
As an independent business owner, the GP would not in any case, have a "manager", although depending on the size of the practise, he may have partners. Similarly, the person in charge of the hospital will be the CEO who wouldn't concern him or herself with what is, at this stage at least, a simple disagreement between two parties.
I'm afraid it doesn't work like that here in Jersey, its not NHS, @ GP's don't have managers here, they are 'a business', they don't have emails either...
I find it all a bit hard to follow. Is it possible you forgot to pick up the blood form from the surgery? That would be VERY easily done at my practice... I have to collect it from the receptionist on the way out and go to my local hospital for the blood test - the times and place are on the form.
On the plus side he is sending you for tests and investigating coeliac and pituitary isn’t he? Plus iron levels? He has remembered you tested normal for coeliac but were not on normal diet.., sounds like he’s referring to his past notes and therefore making sure that is also checked, plus testing for other things.
It doesn’t sound too bad to me considering how many people on here struggle to get tested. What were you hoping he would do?
Ruby1, I kind of thought the same. It's a bit disappointing, but unfortunately they always are a bit disappointing, and can be far far worse than that!
It's always good to be sent for more testing. I recently had an afternoon in hospital in an exhausting battle of wills with a doctor. Eventually he sent me to get a huge list of tests that day, they took something like ten tubes of blood out of my arm. At the time I strongly suspected he'd ordered so much blood taken just to punish me, because I was very ill afterwards. But months later I'm very pleased I got so many extra results.
Acth is no use for secondary hypo though- you need overnight metyrapone. I’m not sure whether they actually don’t know this or are just banking on the probability that you won’t. Likewise 1gf1- just fobbing you off.
I think a very good way to assess the quality of an endo would be their opinion of Thyroid Uk. The crap ones are always dismissive and the few good ones are always supportive. The bad ones feel threatened.
He asked me how come I know so much about endocrine, I replied thyroid uk.
He was beyond scathing, & pointed out that he wrote the bible on TSH & T3 & 4,that he was on the panel when the facts were changed to heresy...
So that immediately put me on alert. He said also that Thyroid UK get most things wrong.
I felt I was being fobbed off when he said my October cortisol blood test was 300, implying that it was under range, probably the only thing in range in Oct!
Also when I checked the tests he mentioned - I noticed the fast from HRT & iron - to avoid skewed test results, he never mentioned fasting. That's just some of the reasons why I'm paranoid.
I wish I had your faith, & I wish I had remembered my recording device too. If you had heard him,(see 1st part of posting) or if you could see the entire letter that he sent to GP, Which I didnt post, or if - I forgot where I was going with this now, lol.
But I didnt forget, he wouldn't give it to me, he was muttering to himself in arabic @ giggling! it was my 1st visit too , so I didn't know the procedure. If I had known what was afoot I would have got the nurse to sort it, it was only when I got the copied in letter that I realised what he was up to.
I wasn't hoping he would for anything. I gave up hoping a long time ago. I got the summons out of the blue, I never expected an appt, My GP always refused me one.
Usually The only way to get a referral here is to have a TSH over 10 & also be head of the mafia.
If I was a paranoid cynic I would suspect a new 'judge made law' is on the horizon - to protect the interests of the medical profession here. Lest we peasants start getting too uppity & decide to start suing. LOL.
Well clearly your B12 is low, and you've just completely forgotten what you actually said to the endocrinologist. Your endo wouldn't make mistakes like that!
I hope none of what they've written hinders your treatment
Thanks, but I can't get treatment, And this is 1st appointment with endo - and probably last, I was advised by a concerned Dr to insist on a referral by my own DR, then the hospital had me hauled up B4 a Endo, after hospital blood tests. If I don't take supplements like metavive, I get hypothermia, and I can't stay awake. My heating & hot water got stolen a few years ago, & I have rotten single glazing, with 1mm glass, some of the windows have fallen out, so I am forced to stay in bet in winter with electric blanket & curtains drawn. But I get very ill after stress, also I have skin, bone, muscle, hair and cognitive worsening problems, also my eyes are bad, no one will look at them. All I ever get is accusations of secretly abusing "sports steroids" and drinking umpteen bottles of wine, to explain away the disappearing TSH. I have no quality of life at all. I don't see why I should pretend that their lies are truth, or that my truth are lies. I have just come from dentist - to have roots removed from teeth that broke off at base level, thanks to years of untreated hypocalcaemia & secondary hyperparathyroidism. £390, including the replacement of a lost filling, & I have to go back for gum surgery - again.
They never test B12, & I can't afford to buy any more supplements.
It is code for 'liked'that's all. Code for pain in the ass might be 'very distressed' or worst of all but a double edged sward is 'this litigious young man/lady'.
Yes I had that on a letter once too from an Endo. He had also got info I told him in our appointment wrong which was key. Needless to say I was not impressed, basically listening skills! So I took it up with him after by email, as I had paid for a private appointment and had reluctantly agreed that my GP could be copied in so hopefully it would help me to get some blood tests done on the NHS. Very frustrating and in the end I just got the GP to disregard his letter from their system. My right according to GDPR/Data Protection as the key facts/health history he wrote were incorrect! He offered to correct t but I didn't have confidence in him after that initial meeting and so wanted to move on. I feared I would be wasting my time rewriting it which I had already done. Sadly I think a lot of Doctors write what they want and as they see so many patients they are going on memory when they dictate this stuff so it depends how good they are. They are especially ego driven though and think they know best. I don't think this excuses them fro getting the info right even if they don' t agree with what we are telling them. I am sorry to hear you had a bad experience. I think your gut instinct is something you should trust though. In my experience these Doctors always come across nice enough and pay us lip service but do label us mad. When actually we often know more about it all and especially our own body than they do. Sending healing thoughts and strength your way. Glad you had a rant and offloaded.
P.S. They also often twist our words deliberately to cover themselves and think once it's on paper we won't bother to do anything about it. But you can according to GDPR! Maybe do that...
Jenny it sound to me like your GP is being very supportive if you are hoping to be prescribed T3 by the endo. 'complains of being tired and lethargic' He is pointing out hypothyroid symptoms to support you getting treatment. He is also pointing out that you felt better on T3 to help support a prescription of it. His comment about you getting your T3 from the internet is to raise a concern that you should not have to do this and that it should be prescribed to you. He has described you as a pleasant lady which if there is any code to this ( I have seen lots of comments like this on medical notes over the years) it is code for this is one of my favourite patients. You need to kiss this man. Some of his comments about your friend appear to be there to highlight the issues thyroid patients face generally.
in reply to
apologies this is the endos letter but the same applies I think. He is building a case to prescribe you T3.
My GP is not supportive at all, she NEVER even tests the parathyroid ferritin, D3 or antibodies. Did you read the 1st posting? The Endo put words in my mouth, claiming that I had been buying and overdosing on - in fact abusing "sports steroids" for years. Up to the last blood test I had only bought metavive since October which is a mainly rice flour supplement, I told him that, he accused me of secretly stopping them for weeks B4 test, to explain the suppressed TSH, and accused me of deliberately giving myself thyrotoxicosis to give myself "inner peace" & to get high!
The only reason I asked for an appt with Endo was because aquaintances, including a very concerned GP who looked at my records, but diagnosed me B4 he even saw them or heard my symptoms told me that just by looking at me he could tell that my endocrine system looked suspicious. He also more recently brought up the subject of iron levels, which together with my medical history including thyrotoxicosis My own GP chose to ignore. They are now denying that I ever had it, & claim that my records only go back 10 years!
They had me on antidepressants for 30 years, in spite of no tests. When I had tried all 8 AD's which all made me ill _ to cover herself GP sent me to Psychiatrist for assessment, he told me "your not mad your ill, go back to your GP, "(I had severe secondary hyperparathyroidism). I have to buy my own D3 as they don't prescribe it here, you have to be elderly & have broken bones to be advised to take D3, & we pay £50 to be told theres nothing to be done. So I have had osteoporosis for years. I have to pay for my own bone scans, self diagnose, and self medicate. Endo thinks it's funny that we have to do that here. He kept the blood form in his hand & refused to hand it to me - saying with a smirk that he would give it to nurse, then he wrote to GP to say that I 'forgot' it! You call that supportive?
I will have to phone general hospital tomorrow to ask what to do with the blood bag, & also what meds I need to stop B4 tests, also when tests will be conducted, & if I get the runaround from anyone I will go the litigation lawyers.
'complains of being tired and lethargic'. I didn't complain to him about anything, he got that from the GP's notes from when I had hypo symptoms & all kinds of anaemias, when I was bedridden. B4 I was given T3 to try by a friend, he was making the point that I didn't need T3, that I was some kind of junkie for taking the offer of a trial t3 from friend, Iv'e never been offered anything by Dr's - other than antidepressants.
He was scathing of my friend and thyroid UK, & accused me of abusing metavive, except he called it T3 and that it was a sports steroid abused by hedonists to feel & look good.
His remarks to my face juxtaposed with comments in letters to GP suggest to me that he is two faced, he also lied on many things in letter!
apologies I was only getting part of the picture and trying to make sense of his letter he obviously was very unpleasant when you met him, not unusual for endos. However if you have quoted him correctly he has written in the letter that you had complained of being tired and lethargic and that you felt better when given some T3. He has been unintentionally very helpful in documenting this and it adds a lot of weight to your needing a prescription of T3. I presume he hasn't said you were abusing the metavive on paper. Consultants do often quote from letters from GPs or previous notes which is why you have this tired and lethargic quote. He was clearly nasty to you when you met but if it was a letter written about me I wouldn't try to get it changed I would be looking to make use of it. I have read hundreds of medical notes and letters over the year and I got the wrong end of the stick and thought he was being helpful. I think other medical professionals reading this will do the same and it might be helpful if for instance you were admitted to hospital ill, they might try you with T3 if they dont know what is wrong. Pleasant normally does mean they like you. I am wondering after what you have said if this letter was written by another doctor who worked with him. He may have asked a junior to write something up for him based on a summery of appointment. I am one of the most vitrionic posters on this forum re medical professionals I dont believe that 9 out of 10 of them could hold down a job in a shoe shop and look forward to the day when most of them are replaced by a computer terminal but I am also aware that there is a small minority of kind, caring doctors who try very hard to meet patients needs and are very vunerable to the vultures around them. I think you migt get somebody into trouble if you make a fuss about the letter. By all means complain about the consultants rudeness, incompetence, your life long lack of treatment, the rubbish he talked about T3 but leave the letter alone.
No need to apologise! My bad for rambling, in stages.
This is what he said in letter. "has been taking T3 from online website for the last 2 years" !!!! what I actually said was that I was (since October) taking a supplement called metavive.
I have no intention of complaining about the letter, that's clearly what he wan'ts me to do. I think that would be foolish.
I have emailed diabetic nurse to try and find out what I do with blood form, that he sent me, and so according to online sources that state that a 6 week fast is required B4 the Short Syncthen test, when will they be testing me? so that I can get it right. GP tested my Celiac without telling me that I had to eat gluten for 6 weeks B4, so I'm not making the same mistake again.
So now I'm not registered as major depressive, because I can't handle antidepressants, & now I'm no longer gluten free either. And I cant get referred for dermatology either because the skin dr's say my skin & hair are secondary
I need to get this test right. They make me out to be in the picture of health.
And yet I can't even get out of bed without some kind of " sporty thyroid"
Placebo effect? wondering womb?
The fact that he is saying (lying) that I have been buying a sports steroid called T3 for 2 years online, (which contradicts what I told my GP) - then pretending that I "forgot" to pick up the blood form from him, when he never offered it to me - tells me all I need to know. I may be brain damaged, but I'm not daft.
It looks as if we’ve been going through this for about the same length of time, and we’ve had the same degree of luck with endos so far.
So, we have similar (low normal) levels of Ft4.mine began at 12 (9-22), and went down to 10 in successive tests. My tsh has never achieved normal levels- it began at .1 and at the latest untreated test was at .03.
Since then all my results were after treatment, and suppressed, about .01.
When I came here and posted my results, humanbean (genius), asked if I had ever had a serious pph and suggested Sheehans. Light bulb moment, I had one 25 years ago, and I think humanbean is absolutely right- endos behaved with just the same condescending rubbish as yours. I also tried t3, huge improvement, able to stay awake for the first time in months!
I had Levo prescribed by a private gp and then by Dr Vanderpump- unfortunately nobody bothered to explain central hypo to my gp and he went apeshit when he saw my suppressed tsh which is all he’s been taught to look at. So now I’ve lost my Levo and back to buying t3 on the internet. This is worrying me nearly to a frazzle in case I can’t get it, and as the endo just doesn’t believe me and won’t do the necessary tests, I feel stuck.
I got all that crap about his pleasure at seeing me before he dropped me in the shit!
Yep, you are on the same merry go round all right! The 1st printout TSH I got B4 I tried T3 (that a friend gave me ) was 1.5, then .88, then lower still, it went to 0.2 at it's lowest, though that was after self treatment, with metavive. The reading on the PC in Endo's office was - if memory & eyesight serves me right 0.3, so borderline.
It never ceases to amaze me that when calcium, iron saturation, vitamins etc are waaay below range, for no apparent reason, the Dr's say "everything fine " on the letter heading, & yet when TSH is borderline the patient is called every name under sun! There was - I hear a time when FT3 & 4 were considered thyroid hormones, not TSH, but now a healthy TSH is seen as a sign of a threat to the power of the 'gods'.
When I first took metavive My FT3 was right on the border I felt too ill to leave a 12 hr gap, so ended up on a double dose B4 test, just so I could make the GP appt, but TBH it wouldn't have made any difference to my GP.
When I felt at my worst, just B4 a friend gave me some old liothyronine to try, I had taken vitamins including biotin the day B4, so fT3 was borderline, biotin is used in the testing process so taking it skews blood serum results. GP threatened to rip my thyroid out as he claimed that I had thyrotoxicosis - even though TSH was in range. He threw me out without blood test or prescription - he charged me £52. All GP's here are private, but it's still a cut down version of the UK NHS, GP's are a 'business' same as dentists.
You had a bleed? that would upset the pituitary gland, so could explain the central hypo qv.
Only a private Endo would even consider that possibility. I assume the private Dr's are not 'owned' by big pharma?
T3 (the turkish) can be got on a well known on line shopping site for around £50. per 100 X 25mg.
How big a dose do you need?
You have access to private blood tests in UK, so in theory you could self treat & govern, in theory.
I err on the side of caution as I no longer have access to GP or tests. So I only just started taking T3 last week, after the last hospital blood test. I am starting on 5mg I need to get a pill cutter though.
Is it possible for you to get a different GP, or Endo?
I advised a friend who could not convert t4 to t3 & so couldn't get well on Levo to ask her GP to sell her a "named patient prescription" & then cash it in France. They freaked at her audacity & let her have her 20mg T3 script back, even though the price had gone up to £260, { the reason they stopped it in 1st place}
But then they punished her by lowering her dose of Levo even more - to just 50mg...
BTW I think you saw the same Endo as me! was he arabic?
Let us know how you get on, and don't worry, you have more options in UK, & the fact that you had Levo once is a leg up for future kudos.
But you must impress on these Dr's the need for hormone tests, then pituitary scan.
The one I saw was EXACTLY like yours- but white British, at Charing Cross! It must be the way they treat them at endo brainwashing camp!
I was just looking at some of their old letters- one thing that really boils me is all that rot about ‘she was concerned’...it makes me want to yell at the top of my voice THE ONLY THING IM BLOODY CONCERNED ABOUT IS BEING MISDIAGNOSED AND UNTREATED BY YOU YOU STUPID #*&#
But then I might not be seen as so pleasant!
Did you get a result for igf1? I was also just looking at that in old letters too. Results were given back as showing nothing worth commenting on. Much later, when I actually checked this stuff, it turned out that a) mine was 10 nmol/l which is actually very low, and b) that it has no predictive value for hghd anyway. And my LH at 16 was well under range. No comment!
One thing I have always seen in stuff on central hypo is that is it’s hard to find and you have to be looking for it- is high index of suspicion. If that meant ‘just do a random bunch of serum bloods and declare yourself pleased with the result’, I guess it would say so!
Hold on, what were they pretending to be looking for? I say "pretending" because when they found it they did nothing, have I got that right?
How many hormones were low? & last but not least is "#*&#" a disease that they catch at 'endo brainwashing camp?
I havnt had any endo tests yet, but GP's were always pleased with the out of range results of electrolytes....
The problem is they don't tell you the results of tests if you are ill, & if others complain that you look ill, & you get shingles every 3 years they tell you to buy vitamins & iron, even though you already are, & then you go bankrupt cos half your income goeth on expensive supplements.
So you pay them for the job you are doing at your own expense you are then A. out of pocket, B. out of energy. C. out of sanity. D. out of patience. & if that wasn't bad enough you are accused of all sorts, and your medical written history disappears, to be replaced by their lies.
That Endo wrote in the letter to GP that I 'claimed' to have had thyroid storm.
I never claimed that, I was told that by a GP while living in UK who destroyed my notes, and told me that I had to go back to Jersey to be "cured" of storm by the clever Jersey Dr's. Jersey didnt have an Endo, & Dr's didnt even know what thyrotoxicosis is! That was probably because A. the firm I worked for discovered that I my kidneys were failing, & B, the GP was about to be arrested for fraud involving a scam with a chemist. I don't believe that I ever had storm, I would be dead if I had. I think the UK GP just panicked & lied - to get me out of UK. That put paid to my career, the firm went under because, they couldn't replace me, (I was told), a lot of people lost their jobs. Women at that firm told me my thyroid needed looking at, I didnt stand up to GP & they lost their jobs because of that. But the GP blackmailed me by saying that it was the stress that made me feel ill & that the stress was such that I would end up in a mental home. He then contradicted himself by promising me either a blood test or carbimazole, I forget which, if I resigned. I resigned on my 23rd birthday. He broke his promise & it wasnt till the following year That I got the carbimazole. The receptionist tlod over phone that my bloods were the worst anyone had ever seen.
The script was held out until I took up cleaning toilets & stairs, working with people Psycopaths that no one would work with, so the firm had no choice but to employ me even though I had no experience of cleaning, + I failed the medical, but the psycho cleaners wanted to be overstaffed so that they could sit & smoke & crochet, while me & a lady with learning difficulties did all the work!
The head psycho was a German Nazi, & everyone was terrified of her.
The bordom more than anything kept me ill, so I agreed to return to Jersey, but my arms & shoulders were very weak, & I couldn't hold a job down, I had to borrow heavily to stay in guesthouse, & buy carbimazole, till I was strong enough to get a job that no one wanted - for peanuts. I didn't get to see a hospital dr & get blood tested for 3 years, then after nearly 4 years they finally let me stop the meds, if I let med students loose on me, to interrogate me.
That reminds me, I was told several times that I had too many hormones, not just thyroid, I was told that my immune system was knackered, & that all the infections were caused by stress, & cortisol.
Now I am the other way around.
I have told DR's that I was not tested, or seen till 3-4 years, I think that's a sticking point for them because they always interrupt after asking a question, with a different subject, even though I am concise & accurate.
I have never had any benefits of any kind, not even sick pay, so they must be hiding something, & covering their backs.
But Ginny, don't you have some kind of Ombudsmen in UK? with those levels, plus your written proof, & your knowledge of medicals - couldn't you hold these #*&#"s to account? what about pro bono medical solicitors?
I might have to go down that route.
I hope you find a solution, I don't know if you are still able to work, but I hate to think that you could get worse, your levels of hormones look suspiciously like pituitary.
When I had secondary hyperparathyroidism, I felt really ill, I felt something squirting in my neck followed by a feeling like I was dying. So I googled neck giblets & told GP that I was afraid to take the calcium that I was self medicating for my osteoporosis, as I feared I might have too much calcium. & a tumour on para glands, If I hadn't told her that - she would probably not have tested me!
It turned out that I had NO calcium, & the parathyroid hormones were stealing calcium from my bones, as I had none in my bloodstream.
I am going to try & find the article about pituitary soon, & post it.
"It was a pleasure to meet this pleasant lady" is code for he actually liked you, maybe because you listened to him, did not fly off in a huff or argue in a loud voice. This educated lady is code of knows more than him, and this quiet lady means he could not get you to respond to his arguments. If you ever see "this woman" it means he hates you and never darken his door again.
The rest of the letter strikes me as him covering his back. He blames you for being informed but agrees with most of your suggestions. Then he adds some more to the letter after googling thyroid when you left. This is also the reason he did not give you the blood form, as he had to "remind" himself what he was supposed to be looking for. I think you shook him, knowing your stuff. How dare you!
When they get the results they will not really look at them, and say "everything is fine". He has done his duty as far as he is concerned. It is such a shame we cannot get the treatment that we should. Good luck.
If you ever see "this woman" it means he hates you and never darken his door again.
Oh dear
A recent letter to my GP from a consultant reads
"Many thanks for referring this 71 year old woman..... "
I did think using the word "woman" was rather derogatory. It wasn't a particularly pleasant consultation (not thyroid related) and I was looking for a coded clue in the letter.
It wouldn’t worry me if I saw that... as long as I was 71 🤣 I think it’s just stating the facts. He knows he’s got the wrong person if there’s a man sitting in from of him 😬
I have read a recommendation to send your doctor a letter outlining your chief concerns, that arrives a few days before your appointment. Even if the doctor only reads it before they enter your room or in your presence you will be reinforcing your main points. Bring a copy just in case it never reaches them. Try to get in a quick recap before you leave!
I have read doctor notes on myself that sound like a different patient altogether. Some of these doctors drink too much I hear.
I have had similar letters which are completely incorrect and made me sound like a psycho. Recently a letter from the allergy clinic saying that I had lip swelling etc but on examination there was none. Relieved I taken photos!! They don't take proper notes and fill in any gaps with what they should have said or done!
In my view, the best way to deal with the situation is to write to the Endo and the GP covering the points below. Stick to the facts and not opinions or accusations
1. thank you for seeing me on... regarding my thyroid problems and ccing me in your letter to my GP
2. unfortunately some errors appear to have made their way into the summary of the consultation
3. give the facts of where the Endo letter varies from you recollection
4 ask for what you require e.g. T3 at X dose.
be clear and precise.
there is some excellent advice below regarding the details of treatment.
I have never asked for T3, they don't prescribe it here anyway, I know several women who were told like I was that they had hypothyroidism, but heard no more about it. I spoke with one yesterday, she now has diabetes, they stuck her in a room to look at a chart showing a picture of a pancreas, that was it, no tablets. She completely forgot about my asking her to remind the Endo about what her GP had told her about her thyroid. These women get very ill, obese, senile, carpel tunnel syndrome, deafness worn bones, much pain. Even if you have high TSH, unless your a Dr they will ignore it, & they won't tell you what it is or refer you!
They have to fight for the pain clinic over & over, & if they eventually get an appt they find that it's CBT, or as we call chin up behave yourself therapy.
One of the women, who is around 80, when her husband died she could'nt feel her legs, and she went semi blind and senile almost overnight, the Dr's ignored her, I asked her if it could be B12 deficiency, she huffily retorted that she ate well thank you.
Eventually she was given blood transfusions, for a while it helped, but then she got worse, brain scans revealed damage, but they didn't tell her what caused it. My money's on B12. She lives alone.
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Prescription from private endo
GP referral to Private Endo
Endo Prescribes T3 - GP's computer says NO!
Gp advice before seeing endo
T3 not available anymore from my gp or endo
