Well..... I just came back from another pointless (and upsetting) GP appointment, during which I was again told that any- and every- physical symptom that I have is attributable to my poor mental health.
I also managed to somehow really annoy the Doctor by asking for copies of the (many) blood test results; he became very defensive and told me that the "relationship had broken down" (saw him for the first time two weeks ago when he put in the blood tests request and prescribed beta-blockers for the "anxiety" that he also diagnosed at that time). Never mind that I had gone to him (well, any GP, there is no choice....) with many physical symptoms that are typical of hypothyroid, let alone some other conditions.
I will always agree that the mind and body are not mutually exclusive and yes, it is lovely to have someone sympathise and understand that my terrible and ongoing and UNCHANGEABLE (I have worn myself into the ground trying to repair and at the same time, trying to suppress/half-accept what I cannot change) family situation and history - even to the point of telling me that I have been "poorly served" by the Psychologist(s) that I have seen...... BUT.....
......when the blood tests come back "normal" (yep - within range), then my physical symptoms are again disregarded and hand-waved away (although, as I said, the appointment was an unmitigated disaster (- I do NOT know how I do it!) . Leaving me at a loss again - and so I turn here to my lovely HU friends.
He did order many blood tests, which included BNP - for heart failure, which I had worried about, due to the fact that I "liquefy" during the course of a day - whether I eat, or drink (fluids, not vodka!), or not. Also a Ca125 test (for cancer, I believe), Celiac.... and the usual FBC, LFT, U&E, even LH and FSH haha.. No lipids/cholesterol - which has been on a steady rise over the last 18 months, but did get Vit B12, Vit D, Iron and Ferritin and Folate and TSH and T4 (no T3, obviously....).
He did say that some of the physical symptoms can be caused by changes in cortisol and adrenaline levels (themselves affected by stress, agreed), but there is no way to check these things.
(I did have a cortisol test a couple of years ago, so there is such a thing, I am aware.)
My raised BP (mostly 152/92 every day now....) and low basal temp (34 - 35 every day) don't really matter of course.
The most relevant results are -
T4 ----- 14.7 pmol/L [10.0 -18.7]
TSH ---- 2.63 miu/L [0.38 - 5.5]
(bloods were taken at around 10:45am)
Vit D ----- 56.7 nmol/L [- when 25 - 50 = mild deficiency]
Haemoglobin ----- 39.0 mmol/mol [no range for this one]
Serum ferritin ---- 48 ng/mL [22.0 - 322.0]
Within the Full Blood Count, the RBC was above range and MCV below and MCH just in range.
(Mean Cell Volume, Mean Cellular Haemoglobin)
It seems that SOME of these results indicate anemia of some kind, but even that is being sidelined in "favour" of attributing every.single.thing to mental health, which is SO easy for them to pin everything on, as it is perfectly evident upon speaking to me for more than five minutes, that I have "issues" - but also, those issues simply can''t be fixed as I am on the receiving end (so to speak) rather than the inflicting end (although today's GP might disagree, feeling, as he said I did, that I went there "all guns blazing").
So, having left with mascara all over my face, a print out of SOME of the tests (he printed what he could, VERY reluctantly, before his printer ran out) and a very heavy heart, wondering if I really should move Surgery - afraid as I am of "leaping" from frying pan to frying pan :o/, especially as several things just never got mentioned apart from "in passing". When, as I was leaving, I wondered aloud, just how I manage to annoy people so easily, despite smiling a lot (too much, sometimes, it seems), he said, "Maybe it's the way you smile".
I feel no further forward and in some senses, have taken a step backwards as (yet)another GP makes a note on the records that I am depressed/anxious, histrionic and mentally unwell. But - haha - physically - quite possibly superhuman :o)
Any ideas, thoughts, suggestions - anything at all (apart from pointing out that yes, I do come across as a "head case") would be most gratefully received by this woeful human specimen.
xx
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DumbBlonde
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Don't put yourself down as thousands of people have had similar consultations to yourself.
For instance and I'm going to give a link which was posted yesterday and if you go down the page to where I refer to Lorraine Cleaver and below this Humanbean has copied a ten page letter written by a hypothyroid woman which is self-explanatory as the letter was forwarded to the Coroner's Office as she, finally, committed suicide and had told people beforehand. The letter was addressed to the Scottish Parliament where Lorraine Cleaver has Petition before them to look into the dire straits of treatment/non-treatment.
The following doctor was horrified that so many people remained undiagnosed (he was taught as a medical student (before blood tests were invented) to diagnose on clinical symptoms alone. He invited every Endo in the UK to a conference and every single one refused. The GMC hounded him for prescribing due to symptoms and/or thyroid hormones we we think it caused him to die prematurely of a stroke.
Thank you shaws, I am going to sit down with a cup of tea and read the links shortly.
I cannot seem to get across to them just how bad (and yes, suicidal) I feel, without coming across to them as, using their definition, histrionic - and, using mine, a drama queen.
I did come close earlier as, again, when trying to pour oil on the troubled water of the appointment, I said that I was pleased that things had been smoothed over and he said, "Well, yes, at least I didn't throw you out".
To which I replied, "And I didn't simply get up and leave".
I really did come close to a flounce, that's for sure.
It was left by Jacqueline Falkowski to be found after her death and was addressed to Sheila Turner of TPA. Sheila didn't get it for months after Jacqueline's death because the letter ended up with the coroner first."
That's why some members self-medicate which really shouldn't happen. I remained undiagnosed but I knew nothing, then, about the thyroid gland. I was also discharged by the A&E cardiac dept as, 'probably viral with high cholesterol'. Nowadays high cholesterol is assumed to be due to our diet only, whereas before the blood tests that was one of the clinical symptoms. By the way 3 days later after A&E when I demanded a thyroid hormone blood test (suggested by a first-aider) my TSH was 100.
I've learned lots since then thanks to Thyroiduk.org. and seeing doctors who knew the symptoms like Dr Skinner and Dr Peatfield and who treated the patient and not the blood test. Dr S could prescribe but Dr P couldn't as he, too, was hounded as doing as he was taught and resigned his licence so now cannot prescribe but can advise.
Also they didn't test your Free T3 - it is T3 which is the engine and T4 if on levo alone is supposed to convert to sufficient and many people are able to do so but some of us do not.
I am glad the others have also mentioned you low minerals/vitamins.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"
DB, I am horrified by the way you've been treated today. I gasped when he said that about 'the way you smile'. There's a lot of vocabulary I could use to express my disgust, but I'd get banned from TUK! Some doctors are sadists, as well as cretins.
You are by no means a head case. You are intelligent, literate and articulate - although it's not unheard of to go to pièces when confronted by an illogical moron like that! I've done it myself.
Does he really have no idea that your TSH is too high (the top of the range is rediculously high) and your vit d is too low and your ferritin is too low and your vit B12 is only just adequate? No, I suppose he doesn't. But he should be judging himself, not you, because he is ignorant. And condescending. Sounds to me like you never had a Relationship to break down! Or if you did, he thinks it should be all on his terms, and never mind what you want/need.
So, what to do now? Have you considered self-treating? You won't get any joy on the vit and min front, anyway. Best to start getting those optimal by yourself. That, in itself, will make you feel a bit better. Then you can consider your next step.
Oh Grey - hugs back to you :o) I love your (wish it wasn't necessary) rant.....
He is a (probably newly-qualified) young locum, male obviously. I am at a loss trying to figure out where I went wrong (waiting 40 minutes after the appointment time and thinking I would have to talk bloody fast didn't help though I suppose). Having seen him only once before - and knowing full well that my "reputation precedes me" - there is hardly a Relationship (SHOULD there be? when a patient has no say at all in the Dr they might see.....).
I just remembered that the usual reasons for reluctance to provide blood test printouts was added to with, apart from "they need to be read in context/by a medical professional" was that, if I googled the ranges I might be looking at ones from the US or Australia - because, you know, I wouldn't realise that, would I? And of course, human beings are SO very different across the Atlantic or DownUnder :o(
He said that was felt that he didn't need to dumb things down too much for me and so then started talking about neuro-transmitters and the fact that they will affect everything else, so I should taken medication for my mental problems, not for anything physical. (And yes, most of that went over my - empty-ish - head. But once upon a time, it would not have.)
I do have T3 (Cytomel) should I be brave enough to self-treat, but do worry that my adrenals are ****ed, as per Dr P's assessment last May, which means I should try to sort them first if I can .....
As for supplements,I am trying to be consistent with the following regime (but have many MANY more containers of supplements that I simply cannot add in and am also afraid of the fact that my poor eating means they either won't be metabolised properly, or will cause more gastric problems; I am so "off my food" at the moment that I sometimes stop chewing half way through - a mouthful, not a meal, and cannot complete the process):
Pregnenolone
Perefectil Multl-Vitamin//Mineral with quite a bit of Iodine
Vit B12
Vit D3
Vit E
Hyaluronic Acid
Vit K2
Spatone Liqud Iron (x1) plus AVC in Orange Juice
But then if I have a day of the horrid fluid(?) build-up, I stop every single thing and am back to Square One, or worse.
I know that I also have some kind of eating disorder (a little knowledge is a dangerous thing - as is a lot of "research" haha) and quite possibly my physical issues stem from severe and unhealthy weight loss on several occasions over the years. Now I cannot budge the extra pounds, no matter what I do - and none of my previous (admittedly unhealthy) methods work. Nor do the healthy ones. I feel doomed.
As I said, I need to move Surgery but if, as I suspect, I am the cause of all the appointments going pear-shaped, I will know from the first moment if I am doing it again - and then it will be too late. At this time, whilst knowing that I need to choose my battles wisely, I am not sure how long this state of affairs can continue.
Thank you so so much for your kindness and supportive words, I appreciate it more than you can imagine.
Young and insensitive! All he’s remembering from his training is that all patients are idiots! I don’t know about a ‘relationship’ but there should be respect between patient and doctor. But how can you respect him when he talks to you like that and shows no respect himself?
They are terrified of us googling things because it might show up their inadequacies. And they sincerely believe you have to go to med school to ‘understand’ things like that. Which obviously isn’t true. He’s just making excuses. As I’m sure you know. His attitude was inexcusable.
OK, so, yes, adrenals… have you tried taking Nutri Adrenal? Some people find that works very well. Are you getting plenty of salt? Have you tried the adrenal cocktail?
Personally, I would ditch the multi-vit with the iodine. If iodine were going to do you any good, it would have done so by now. And it’s probably making things worse. Multi-vits don’t contain enough of anything to do much good.
How do you feel about the Pregnenolone? Do you feel it’s helping? How do you feel if you stop taking it? It doesn’t suit everyone.
Are you taking a B complex with the Bs to keep them balanced? How much B12 are you taking? What was your level?
Vit D3 and vit K2 – good, but how much are you taking, what was your level? Have you tried taking some magnesium and zinc with that?
Could you up the vit C? Take lots, preferably at bedtime.
So, what are these other supplements that you daren’t add in? Have you tried adding them in one at a time and monitoring the results? You can always stop if they don’t agree with you.
Are you taking Betain and/or CAV for your gastric problems? Are you taking pro or prebiotics?
Have you considered that if all else fails with your adrenals, you could take HC?
Yes, I know what you mean by stopping chewing because you feel you just can’t go on, and what’s the point anyway! But sorting out your tubes could change all that!
So, what does the horrid fluid build-up do to you that makes you stop all your supplements? Do you believe that they are responsible for the fluid build-up?
As to your eating disorder – if that’s what it is (it could just be hypo) – I think you should seek out the posts of 1133 on here. She’s been there, done that and written very lucidly about it (and she gave me her permission to mention her name to anyone that is struggling). But know that you are not going to lose weight until your T3 is optimised.
I don’t believe that you were responsible for the appointment going pear-shaped. He’s a doctor, for goodness sake, he should be trained to deal with people more difficult than you, but he sounds so far up his own backside that he expects patients to be seen and not heard – and tug their forelocks on the way out! You must not blame yourself. He just wasn’t doing his job, and that’s all there is to it.
Sounds like a frustrated would-be psychiatrist, to me. lol Maybe he failed his exam and they wouldn’t let him into psychiatry school. Tell him to get over himself!
I cannot imagine how that Dr would handle someone who was bouncing off the walls of the Surgery if he couldn't cope with me saying that I had felt like "c**p" since the last time I saw him, in addition to wanting to "call the shots". So, in a way, I made what I was afraid would happen, happen..... He wanted to stress that I am intelligent and he "respects" that, in the same way that a few years ago, a Counsellor at the same Practice wanted to tell me that I should not have any problems because "look at you, and then look around you....." (WHAT?????)
None of these things matter when I feel so terrible - and yet, am very aware that I do not feel as terrible as some do, as in, I do not have awful aches and pains in my muscles or joints - and I am also aware that with make-up skills, I can look "OK" - but only just - and they will have to prise that blusher brush from my cold, dead hand. Even so, I sometimes THINK I look OK - and then see myself in a mirror - yikes!
The problem with any of the supplements that I take is my inconsistency, as with my eating. I know some (but not all, b y a long way) of the theory and read so much that I learn a whole lot more but sometimes my brain just shuts down as I have become more confused than ever and have NO idea which way to turn or which tablet to take next.
A recent clearout of my supplement cupboard - yes, it's a cupboard..... - revealed - in ADDITION to those I listed before -
CoEnzyme Q10
Boron
Zinc/Selenium
Magnesium (I also have the spray/oil)
Iron - this was a "special" one which I cannot heck as I am not at home - but I have, although don't take, all the various Ferrous versions
Melatonin from US (also have Zopiclone from GP)
Iodine
Ashwagandha
Pomegranate Extract
I know there are more, I shall edit this when I am at home....
I don't take the other B-vitamins - and in truth,am not sure if the Pregnenolone helps ot not but I do take it in the hope that it will help with the "female" hormones, as I fear that I have symptoms (I know I know) of oestrogen dominance - and I am certainly afraid to bring anything up about that as I was once bluntly told that "there is no such thing as progesterone treatment"; by a female GP no less!
I do take Digestive Enzymes (HCl/?Pepsin) with a (rare) meal, as I understood that to be the ?only time to take them. And I just this week, have taken most of a seven-day course of probiotics but they again should be taken with food..... :o(
I don't do anything consistently enough to know if they are helping or harming but by my my - yes, distorted - reckoning, if I put nothing IN, then nothing will happen (yes, I need help) :o/
I do, admittedly, react badly to sugar of almost any kind - and the fluid build-up quite literally BURNS. It may fade away but it sometimes can last - but will eventually dissipate. I read on some forum or other of someone else experiencing something similar - as though the food bypassed the digestive system altogether and somehow ended up in the body tissues. (No real gastric upset in the usual sense, just this strange and awful feeling that the food never really had lot to do with the stomach; the only other time I have read about it is in cases of gastric bypass and similar (I have not had and would not need.....) when there is an absorption issue and something called "dumping" happens because half of the mechanics of the digestive process are missing.
I cannot remember the forum/website (or find it in my History) but I know that was at that time, researching Myxodema, which I know is rare (although can come about from untreated hypothyroidism), but I seemed to have many of the symptoms.
So you see - and in a way the Dr was right - I am a mental and emotional mess, and the the more I try to figure it out, the more confused I become: I am so grateful for your interest and advice.
DB, I shall have a think about all that - sleep on it! And get back to you tomorrow. It's a lot to digest at this time of night.
The only thing I can tell you now is that your doctor is not going to be able to help you because he just isn't interested in you. He's far too busy bouncing his intellect and witty words off you, feeding his own ego.
Anyway, there has to be a way out somewhere. We'll put our heads together tomorrow and see if we can find it - ok? Try and get some sleep now. Good night. x
Oh grey - no worries, I was pulling together my thoughts to respond to your questions about my (loose - very loose) "regime - PLEASE don't expend precious energy figuring out the mess I have got myself into; I appreciate your wisdom as you must know.
(I agree about the Dr and am already worried about the future appt he has scheduled for God knows why/more of the same.. *sigh*)
There was also a 100+ pages survey of around 5,000 patients about problems and the Petition has gone to the Scottish Parliament by one of our members, Lorraine Cleaver.
It is SO frustrating - and when I end up discussing the mental/depression issues with them, every other thing becomes (to them) of no relevance, when anyone who knows anything might actually consider that the mental stuff can be a CONSEQUENCE rather than a cause.
I am just dragging myself through life at the moment - but am also very worried about the other conditions that can arise from untreated hypothyroidism.
The best method I know to prevent the situation deteriorating at an appointment is to bring a sympathetic friend/family member. They can give the GP an alternative view of what it is like to be you! It also helps to present a written list of symptoms to add to the file, because from experience they will only pay attention to a couple at each appointment. Unfortunately they won't look at you as a whole semi-functioning human being with a complex condition. The emotional issue basically blinds them to any other possibilities.
For example, I have a friend with bi-polar. She was in a terrible state with a recurrent ear infection which due to it's chronic nature had affected her entire system and sparked off sinus, gum, respiratory, immune and digestive issues in addition to early menopause. Unsurprisingly she was a physical and emotional mess.... and the doctor basically refused to look in her ear and declared that it was her mental state that was the problem. Fast forward a year and she has since stopped seeing that particular doctor, had a operation to repair the perforated ear drum, replaced the rotten ear bones with a cartilage graft and is finally on the mend! Also she is in the best state emotionally that I have ever known her.
On the other hand, your doctor sounds like a complete and utter 'starts with c, rhymes with rock' x
I have to - as always/ever - rely on my own resources for this. Sadly.
Your friend with bi-polar is a classic example of the poor "treatment" that is meted out these days and how keen they are to pigeonhole everyone (even though yes, of course, they may well have psychological issues) theses days, even when they are blatantly in the wrong bloody hole.
It would be easy to think that - with the NHS in turmoil and financial meltdown - that stories of the poor treatment that people are "getting" are a recent thing...... but many years ago, I pleaded for help with post-natal depression symptoms and begged for help, digging my heels in a little. Ended up being carted off in an ambulance to the local Psych Dept at the Hospital. Even writing this now makes me wonder if they might have been right somehow..... Oh, and I got no help - even though I had my infant daughter with me. My (wife-beating) husband came to fetch me and That Was That.
This Dr had actually booked me a double appointment - but it would have helped, 1) had I known that, and 2) if he had not got so far behind that the double appointment was irrelevant to me and was just used as a "but look what I did to help you" remark....
I am so sad that the little glimmer of hope I thought I could allow myself with what I thought was a forward-thinking GP has now been snuffed out and that he has proved himself to be a [that word] :o)
So sorry you have to do this all on your own. It's funny, but I usually end up accompanying both my Mum and friend to appointments and acting as an advocate. As a result I am better prepared to put myself in the same position for my own benefit.
I know it's difficult, but try and appreciate that you are UNWELL. Treat yourself with the same consideration as you would someone with a broken bone, recovering from an op, flu, kidney infection, etc. An invisible illness is no less valid!
It's OK, in previous years I've been in the same situation... floods of tears, begging for help... and it gets you nowhere other than another prescription for antidepressants and a doctor who can't wait to usher you out of their office. I haven't been carted off to hospital, managed to avoid that to date. However I have had to suffer the inane questions and ineffectual intervention of the district mental health team.
Try one more time with the doctor, concentrate on the physical and acknowledge that the emotional is merely a symptom. If you persevere, he may eventually take you more seriously... if he wants you off his back x
After my last appointment, in an attempt to mend some fences with my mother, I called her to try and make things better between us (not something she cares about). Hm, shall not be trying that again a hurry; she didn't even believe that I had BEEN to the Doctor.
She does have her own health challenges - but, as I can understand it, because she did not tell me (her choice, not mine at all......) when she was diagnosed and instructions were issued that I should not be informed should the worst happen, then why the devil I should think that I could even talk to her about anything to do with MY health is kind of laughable. She seems to think that I am as invincible as the Drs do :o/
I do have a future appointment planned with him, for what it's worth, although he will concentrate on the emotional/mental and NOT the physical, so I am on the back foot from the start. While none of my health issues are aided by them, I suppose that at least I will know what NOT to do or say next time.
xx
DumbBlonde - so sorry to read this and your other posts in the thread. I do believe that sometimes we need to remove ourselves from a situation as frankly this 'doctor' is clearly out of his depth and has resorted to a type of bullying to discredit you. He has displayed ignorance and played the usual game that NHS doctors are so keen to play namely blame the patient rather than admit that they're hard of thinking and bloomin' clueless.
Make a written request to the Practice Manager for a copy of blood test results and it may be an idea to obtain a copy of your medical records for when you feel strong enough to read through them.
In the meantime take some time out to chill, go for little walks to enjoy what's left of Autumn and be kind to yourself.
I did actually get the blood test results printed out by a (rare) friendly Receptionist; there quite a few, so it took while - thankfully there was not a queue (ugh) at that time.
I did raise a complaint - the Practice does not have a "process", rather an "anti-process" - after I got hold of my records in summer 2014. I have periodically requested more recent ones so have them almost up-to-date now, It would be interesting to know what the notes say from these last two appointments.
I have just had a think - and since June of last year, and for whatever reason, I have only (apart from some questions regarding my - failed - application for breast reduction surgery and even then, the first time I asked, the young Dr did not know the process, which played some part in the refusal of funding) seen/been seen by young male (usually trainee or locum) Drs. I know that some of the comments on my notes are less than kind - all of it is not helping at all. The complaint has the possibility of becoming all-consuming, and trying to consolidate it whilst not feeling too great is very very hard, let alone whatever else falls by the wayside when i turn my attention to it with a kind of diligence that I don't see when I visit the Surgery. So, it's all a bit difficult at the moment.
I do walk almost every evening, weather permitting. But I only go after dark; I don't want to be seen these days (or see anyone, I guess) ---- so I miss the sights of nature that I used to love and that were such a big part of my life.
I sacked my last gp surgery they were all useless regarding thyroid and I had a miscarriage. Well the local hospital / endos / antenatal were all useless too. They all got sacked and official complaints. You have to keep sacking these negligent arrogant harmful people. I now travel to a regional hospital endo and although my labs are in range I felt like I was dying on t4 only meds. They've added t3 meds despite labs in range and it has changed my life. Please keep sacking people until you get people who care and want to help you.
I am SO sorry to hear that happened to you, how terrible.
You are right about sacking them, I am not sure where I could go if not the local surgery and am afraid that it would happen again, as it is now something I seem to cause just by walking in the door and sitting down. Is your endo on the list? Were you referred or could you self-refer? Would you mind PM-ing me a little more information.....
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x
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