After all this time - a "diagnosis"; not what you may think :o/ (and a bit long, sorry)

As written here several times before, I have been trying and trying to get help with thyroid (hypo) - and consequences (asthma [they say] - rising BP - rising cholesterol - anemia/low ferritin -and OF COURSE, depression and anxiety......). Rising TSH and low-ish T4 were shrugged off and the prevailing remarks and tone across all my notes - both GP Practice and Hospital (Endo and Resp Consultants) - have been that it is most "in my head".

So, as an aside, I was involved in Group Therapy (attached to the local Mental Health ?Division), which I attended conscientiously for over a year but in the end failed for me precisely because it WAS a group and my horrid background does mean that I needed something more focused.

Towards the end of last year, I was assigned to a different GP (locum) at the Practice, who had obviously made a study of my record. So, even though I went there with PHYSICAL symptoms (short of breath - inability to lose weight - you know the list.....), he very quickly, and ignoring almost everything else - attributed EVERYTHING to my mental health. Of course...... I really must be super--human, nope - nothing physical could be any kind of problem :o/

He pushed me back toward the MH team (because he had worked there himself - but also) because he believed that I "have not been well served by the mental health team" *sigh*. That was at the start of the year.

I was "levelled up" and to be assessed by a Psychiatrist....... Now, it isn't unheard of for Psychiatrists to recognise that the m/h problems may stem from thyroid issues - is it? - so that was one of the main reasons I thought that it might be worth going ahead, albeit reluctantly.

It was not great - and God knows, I do not like summarising my life - and what a failure I am - in a short space of time and to a stranger. He did say - and the mention of thyroid was by him, not me, so he had got that from somewhere - that he would write to "my" GP and ask if all test that could be done had BEEN done, so I left with that and a follow-up 4 weeks later.

When that came around, he was delayed by 20 minutes for a half-hour appointment and did not tell me that there would be time, just seem rushed and cross with me (and yes, he is not English, so some of my wry humour fell (very) flat) and even more so when I tentatively said that I was worried about his use of the word "hypochondriac" at the last appointment. He went onto justify it, saying that if 11 doctors and two consultants could not "find anything" wrong with the thyroid, then I am creating the problem for myself. He said that he had not heard back from the Dr, but he was leafing through what looked like a fairly long letter.....

I requested a copy of the letter through three channels (the Secretary, my GP Practice and Information Governance) - and did receive copies from two of them - and ALSO of a letter that he had written after the follow up appointment.

So, after one hour and around 10 minutes and a whistle-stop tour through my horrible life, he has offered to the (wrong) doctor - although this will be ON MY RECORD (!!!!) - together with an awful lot of other "stuff" that is 100% twisted/his perspective only (and I don't care if he is a professional, trained for 50 years or whatever......) - a "working diagnosis" of:

> Traits of Emotionally Unstable Personality Disorder

> Hypochondriacal Disorder with anxiety and depressive symptoms

which, wouldn't you say, covers almost everything????

And yet, is withdrawing all treatment from the mental health team, due to (my) poor engagement :o( But has happily put a different anti-depressant on repeat. (I don't take them and never will - but he was grumpy when I declined them at the first appointment.)

He also included something in the initial four page letter (which never asked about the damn blood tests) that I told him that I did not know was going to be recorded and passed to the GP, which was also inaccurate due to him not listening, but which is also on my notes now and essentially carved in stone and it is the devil's own job to get them changed/annotated. If it were possible, I would want to take legal action - but so far, I have taken steps to raise it through the CCG. But it is made even more difficult by him - being a locum - now having gone (his words) "home to Poland" - and any sort of follow-up would be with another locum as they apparently have not had a staff Psych for over a year (!).

So friends, I am now left without help with physical issues - even though the regular GP wants to tell me my mental health is the ONLY problem - and from the mental health side, I am not worth helping and it seems that his objective was to endorse the Dr's opinion.....

So, for me, this is what happens when you try to be determined and repeatedly ask for help.

Be afraid, be very afraid.

xx

:o)

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  • DumbBlonde - your post, most eloquently if I may say, proves that NHS doctor training just ain't working. We want healers but instead we're lumbered with many hard of thinking individuals who stick together and fail patients.

    You're a bright girl, please don't let them use you as a punchbag for their blinkered views and stereotyping.

    Focus on sorting out your thyroid issues, you can do it.

    (((hugs)))

  • Oh, DB, I'm so very sorry. It must have been awful for you. They really are a bunch of quacks!

  • The meetings with him went from bad to worse - but of course, finding out what is now on my record - together with, of course, no help with anything

    physical - is worse, especially as I am powerless to correct it.....

    xx

  • Yes, it's so unfair. There really is something seriously wrong with the system!

    In France, we don't have permanent records like that. And you can just drop into which ever doctor will see you - getting harder now, because there aren't enough doctors to go round - but the doctor you go to see will have no idea what other doctors have said about you.

  • Yes - I recollect you telling me that; I am envious.... That said, I do remember a saying I heard (or maybe even made up myself) many years ago: "Wherever you go, you take yourself with you" -and nowhere is that more true than in a medical setting. The mind and body together and, whether we want it or not, our whole history carried with us. I guess that on the one hand, it should be easier if a Dr has some knowledge of what's gone before - more so if it is the SAME Dr - but how nice it would be for their "opinion" to not be influenced by what has been recorded and it be used in a positive way - to, you know, Help...... :o/

    I have had such awful problems with the Surgery in general - and some Drs in particular (but do realise that I am the common denominator, so I must be asking for it to happen somehow) and I really cannot cope any more with the fact that everything is overshadowed by the remarks they have made. How much energy to put into righting the wrongs - and at the same time, get no treatment or even help any more.....

    This feels a bit like the end of the line now.

    x

  • You mentioned you had Asthma DB ?

    I have some vitamin cures on helping Asthma if interested ?

  • Hi Coastwalker - thank you for your kind words; I am finding it easier than ever to get "teary" at the moment and understanding means such a lot.

    I do think that I am - now - spectacularly dumb and my mind is certainly in some kind of decline, I cannot seem to stop it...... It is only in writing that I can seem to make any sense - but even then, I ramble, stray from the main point and take a long time to feel able to even put (virtual) pen to paper nowadays , as most things that I try to, seem impossible to resolve.

    Asthma - well yes, THEY said I must have it, as I "presented repeatedly" with shortness of breath. Personally, I am not so sure - but there seemed to be no point suggesting that it could be due to low iron or something (thyroid maybe..... nope, never could be that, could it?). I certainly do not have enough breath to run or even rush anywhere, but I don't wheeze in the way I thought that asthma sufferers do. The spirometry readings that have been done, have not been good but they brushed that off pretty much too. I do have the inhalers but 1) hate the thought of them and, 2) am as afraid of them as I am of any other medications.....

    Ihave been trying to think about what deficiencies I may "have" and there must be so many, as I have become so afraid of food and now am starting to find the act of eating both pointless and scary. So -in short ----

    Yes PLEASE - I would be very interested to know of any vitamin cures for asthma or asthma-like symptoms :o)

    Thank you x

    :o)

  • I recall my brain fog made it difficult for me to stay focused for long, but lifted over night once optimally medicated with thyroid medication.

    I will PM you DB.

  • What I've also said to you before is : don't keep blaming yourself. None of this is your fault. It's the system that turns out ignorant, blinkered doctors that cannot think outside the box. They have been taught to stick a label on every patient, and when they get it wrong, there is no system for changing the label.

    They are only human, after all, and humans make mistakes. The difference is, once they have that MD after their names, they become incapable of admitting their mistakes, and rectifying them. But none of that is your fault. So, please don't keep blaming yourself. xxx

  • Hi DumbBlonde, a well written, believable post, proving not all Dumb Blondes are dumb. ;) :)

    Without the help from Members here on Thyroid Uk, many members of my family would still be quite ill, including myself, Doctors have 'missed' or overlooked so many of our medical conditions or not treated them correctly. In turn you find yourself having to become your own Doctor for your own family.

    With the help of Thyroid Uk members I was able to help persuade most of my ill family members back to health with mostly vitamins and minerals and coming off of dangerous Prescribed drugs which were actually causing health problems, would you believe ?

    I too could easily have been lead down the 'depression' route by my Doctor like so many others do. I was NOT depressed, my tears in front of my Doctor was because he would not increase my Thyroid medication, so I knew I'd never get well again. My tears were certainly NOT because I was feeling depressed.

    Some Doctors like you mentioned know the 'mental health and low thyroid' link, like many of us here on Thyroid Uk do, but try finding those doctors.

    Low thyroid is now linking with many other conditions too.

    Go with your own fighting instinct DumbBlonde, take control yourself and stay here on Thyroid Uk.

  • Hello DB, I refuse to call you dumb, as you're obviously not! Have they ever tested your B12 levels? When mine were low I got very breathless indeed. The symptoms of low B12 are very similar to underactive thyroid, and both conditions often occur together. It might be worth asking for that to be tested. As to the doctor's attitudes, I despair at how often we are told it is a mental problem, and all they do is throw antidepressant prescriptions at us!

  • I'm not even so blonde anymore too :o)

    I had the Blue Horizon tests in ?May and the B12 was I think around 350, which I believe is not good. GP brushed it off when I tried to ask him (also the other tings that were noted on the test report; also did not add it to my medical notes.... *sigh*)

    I have just ordered some 5000mcg B12 (methylcobalamin), so will be trying that soon. Honestly though, when I consider the requirements that we as humans have, then I wonder how it they can ever be met with a regular diet. I know that I will not be meeting the nutritional needs an can hardly believe that I am still functioning on any level - but the thought of trying to either eat "enough" or get all the micro-nutrients from supplements is almost beyond me. I am also sure that the tablets and capsules actually need real food to be metabolised properly.....

    Were your symptoms alleviated by taking B12?

    xx

  • I'm on B12 injections as I was diagnosed with Pernicious Anaemia, along with the thyroid and fibromyalgia. The B12 has made a big difference to how I feel. Have a look at the Pernicious Anaemia Society website, and check out the symptom list. Not all reasons for the lack in B12 are PA, but if you have any digestive issues, you may need to take the B12 as a nasal spray, or sublingual spray or lozenges. They get absorbed via the blood stream that way, and don't rely on a dodgy digestive system.

  • I really cannot add to what others have said. Your doctors are rubbish and are certainly letting you down.

    OK, so can we focus on the way forward?

    There's no help to be had via the doctors so what are you going to do?

  • Ruthi - thank you :o)

    I don't really know any more.

    On a physical level - Ihad the blood tests, I even have T3 and Thyroid-S in my supplement cupboard. I have lost my way completely with eating, and have too many food issues to count; even when I plan a strategy, I cannot follow through with it.

    Mentally and emotionally?

    I am a lost cause

    :o(

  • OK, so how about posting your test results here(again?), plus a list of the most critical of your diet issues and any practical limitations, and we'll help you formulate a plan?

  • Hi again - thank you :o)

    The Blue Horizon tests that I had in May were (Thyroid plus 10) -

    TSH - 3.67 [0.27 - 4.20] - risen from 2.5 a month or so before

    T4 - 113 [64.5 - 142]

    Free T4 - 14.71 [12 - 22]

    Free T3 - 5.08 [3.1 - 6.8]

    Ferritin - 53.8 [20 - 150]

    Folate - 14.79 [10.4 - 42.4]

    B12 - 376

    CRP - 6.7 [<5.0] - highlighted by BH but dismissed by GP

    Previous FBC at the Surgery showed low mean cell volume and low haemoglobin, also low ferritin saturation %, which was also mocked by the GP (and I do mean mocked, I'm not being hyper-sensitive).

    If there is a food issue to be had, then I have it. In part, psychological (I should not even exist; it is also a form of self-harm/destruct) - but in the main, physical (and practical to an extent);

    Due to ill effects - and weight gain if I so much as look at - well, almost anything, I have cut out -

    All meat (that is my moral stance more than anything else);

    Milk, cheese, eggs, ice cream, regular cream, yoghurt

    Anything processed or manufactured

    Potatoes, rice, pasta, bread, crackers, crisps, rice cakes

    (Biscuits, cakes, sweets, jelly....)

    Some vegetables and salad vegetables - esp. of eaten straight from a fridge and are therefore cold

    I react badly to almost everything - example, today, I have eaten 4 rice cakes and now feel as though I have eaten a basketball - even around my back. Some foods seem to set parts of me on fire (fatty zones), which is apparently an inability to handle sugar (which I don't really eat but is of course hidden) and causing insulin spikes.

    If you are at a loss with this, I fully understand, but thank you o much for asking me.....

    xx

  • I'm not at a loss, but it sort of explains why they think its all in your head. And such a restricted diet will potentially lead to deficiencies.

    Your TSH indicates that your thyroid is struggling, but your T3 level, on the face of it, suggests you should be OK. My guess is the T3 isn't finding its way into your cells because of your poor mineral status.

    I think you are putting on weight because of your thyroid issues, far more than because the foods are bad for you.

    Have you ever had a diagnosis (or suggestion) of candidiasis? Or SIBO?

    Have they measured Hba1c?

    How is your sleep?

    Are you supplementing at all? If so with what?

  • I would not blame you at ALL if you were at a loss with my problems.....:o/

    And yes, I would think it perfectly OK for them to think it is "all" in my head - if they knew even a fraction of what I am doing to myself. They don't; when I complain of weight gain/inablity to lose it, they quote my BMI to me (as if I didn't know it.....) and let that hang in the air for a moment.

    As if I am stupid. (Which I know I am for restricting in the way that I am, but NOT in the way they see me.)

    I thought that the T3 level looked OK too - but it doesn't align with the increasing TSH and he fact that the T4 is low in range. Interesting that it may not be getting to the cells due to poor mineral levels [I wish it could be possible to know what THEY are]. But then I read/hear of people supplementing with and benefiting from T3 even when their readings are in range - so would that be based on symptoms? And how am I to know if it is thyroid - pernicious anemia - iron deficiency anemia - plain and simple under-nourishment - or even oestrogen dominance...and then, what to do, what to take? I am definitely showing some signs of severe vitamin C deficiency, in terms of the condition of my skin (not only my face) - and I guess I expect a couple of high-strength tablets to fix it (maybe I am stupid), which is impossible and I know it.

    I had a HbA1c test last year (Nov), which was 39 - should be <42? It has been since then that I started to worry about diabetes - but know that it can sometimes seem that I am blundering around trying get a condition to fit to the symptoms.... Needless to say , apart from the offensive psychiatric "diagnosis", I have never been diagnosed candida or SIBO, with much of anything (except asthma) - although, I have been given tablets for high BP, which I don't take.

    (The GP left a note on the system for another test after my last appointment - but I just don't feel OK with going there at the moment.)

    I try to take regularly D3 (5000IU), Vitamin E, Omega 7 and a pro-biotic (I do think this has helped a wee bit, as I don;t get the same cramping feeling). Ask me to list what I HAVE and that would be a whole new post.... :o/

    I sleep terribly - cannot say I don;t fall asleep, but I have the most unhappy dreams and wake up anxious, feeling as though it was half-sleep, never refreshing apart from one or two nights here and there.

    Sorry for length again; I really do appreciate your time and support.

    xx

  • I'm not at a loss yet, but you might not like my conclusions when I come to them.

    My guess is that your adrenals aren't too happy. And poor sleep just makes everything else worse, and seem worse too. You could do the adrenal saliva test (via TUK for a discount) to see how bad things are, because if they are seriously out then whacking in too much T3 will only stress the system further. Also the problem with any T3 containing medication is that your TSH will be suppressed, and you may need your doctor's support at some point. From the way you describe them, obvious self medicating with something they don't understand is not the ideal way to build bridges. Right now I can't see any reason not to try levothyroxine. Its cheap, doctors understand it, most people do well on it.

    You can test for autoimmune antibodies, but I am not sure how much difference it would make, other than to give your symptoms some legitimacy. I rather doubt that you have PA because your iron and B12 levels are fairly consistent with a diet lacking in animal protein. B12 could be better, but I think it would be through the floor if you had PA.

    If you were my best friend I think I would be encouraging you to consider magnesium and its cofactors, and maybe some levo. AND you need to eat a more balanced diet. If you can't face even organic meat then at least eat some eggs and fish. The SCD diet or GAPS diet would be a sensible place to start healthy eating.

    If you can afford it then seeing a functional medicine practitioner would be a really good idea - far more useful in your situation than an endocrinologist.

  • Thank you so much :o) I appreciate all this information and whether I like your conclusions or not, is not he point - I am thankful for your support no matter what.

    I think I see what you are saying about the adrenals and T3. I say Dr Barry D-P in May last year and he said that it was likely at that time and suggested the Nutri Adrenal tablets, which I ordered but - you guessed it - have not taken. As I understand it, adrenals need to be helped first.

    Although the B12 and iron are a reflection of my non-animal protein diet, surely those levels are just generally not good...? (Although not suggestive of PA.) I know that these should be supplemented or found in diet; I struggle to take iron supplements, even one Spatone sent me to the bathroom the other day :o(

    I will never be prescribed levo; when I asked the GP what to do given the increasing TSH and low-ish T4, he told me that a trial of it would "quite possibly make things worse", so no help there. I have looked into Magnesium (and also have some of the oil for application through the skin) - but what are co-factors? (I suppose I could google it....)

    Where eating is concerned, I am - emotionally? intellectually? - easily influenced in so many ways - for example, watching (through my hands) "Earthlings" broke my heart and consolidated my desire to refrain from meant an most animal products, organic or otherwise. I fully concede that it has been detrimental to my well-being and need to address the deficiencies I am causing.

    I am sure that it will be difficult to find a functional doctor in these parts, certainly nothing comes up when I search. Is there something I can do do narrow it down....??

    Again, I cannot tell you how much I appreciate all of your support, it means such lot.

    xxx

  • No time for a full reply but here is the list of co-factors

    Intracellular Magnesium Boosting Protocol:

    Magnesium oil, applied transdermally to skin of whole body

    (Transdermal magnesium is gives you higher Mg doses than oral Mg tablets)

    Magnesium oral tablets, 400 mg or more (increase dose to bowel tolerance)

    Vitamin B6 200 mg

    Vitamin B1 100 mg

    Taurine 2 grams

    Sodium bicarbonate ¼ teaspoon (= 1.5 grams) on an empty stomach

    And talk about serendipity - this just popped up on fb. Its generally thought we are all mg deficient though

    drsircus.com/medicine/magne...

  • This is the kind of story that I almost can't bear to read any more because it is so common and I find it so scary. Be afraid. Never a truer word spoken.

    I have just finished reading Paul Robinson's book "Recovering with T3". I am not telling you this because I think you need T3 but because I was so impressed with his refusal to be swayed by the many unsympathetic doctors that he encountered on his quest to become well again. He sticks with his belief that his sickness is due to a lack to t3 thyroid hormone, no matter how many times the doctors or 'specialists' tell him he is wrong and try to fob him off with some other explanation. He see's through their illogical thinking and approach and general BS when they don't understand what is going on. I believe the purpose of the book was meant to be a handbook on the use of T3, but I found it inspirational in the sense that he stuck to his purpose and regained his health despite so many health professionals who tried to undermine his attempts with their ignorance and arrogance.

    So I'd say it's worth a read, just to refresh your confidence and belief in yourself,

    June

  • June - I'm sorry. I know that I sometimes feel troubled by what I read (Brexit anyone?) - but apparently that TOO is down to my being "unstable" (according to Them). I do believe that I somehow bring it on myself.....

    I think I do need to read "Recovering with T3"; as you say, it might give me some hope - at the moment, I seem to have none.

    xx

  • No need to apologize. In fact, thank you for reporting the reality of the deplorable position that many people find themselves in with the medical profession. This is helpful to others who may be experiencing the same thing, not to mention that the situation needs to be exposed to the light of day wherever it is found.

    I don't know you so I can't comment on whether you bring it on yourself except to say that nobody deserves to be bullied by their doctor. It is an unfortunate fact of life that some types of personality take advantage when they encounter a sick and vulnerable person who's confidence is flagging because the same doctor cannot manage to cure them. Blaming the patient is much easier than admitting their failure. It's a shameful state of affairs.

    Going back to Paul Robinson, his background as he explains it was in a high level executive position, so I assume that he started with a fair amount of confidence in his own judgement and powers of reasoning. Even so, he describes going through feeling that he was being perceived as a 'moaner' or a 'malingerer' and starting to feel 'awkward' about visits to the doctor. In fact, his description of this period is remarkably like your own. He got through it, like many others, and you can too. Firstly, don't give up. Next, stop knocking on the same doors that were unrewarding last time and find other avenues and people who will work with you and respect your input to the process.

    I wish you well,

    June

  • What a rotten way to treat you, but, take a little cheer, it probably shouldn't be done but right in front of my eyes my last GP (senior one in Practice) tore pages and pages out of my notes saying firmly "these notes make you look like a hypochondriac and YOU ARE NOT!". You too might get lucky.

  • Wow! What a wonderful Doc - and person :o)

    Lucky you.

    I fear that the only way for me would be legal action- and not even then.

    Ho hum.

    x

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