Frustrated as always :(

I thought I was getting somewhere with my endo a few months ago as she begrudgingly agreed to test vitamin D, B12, iron etc., as I was struggling with so many symptoms. I think it was more to placate me and prove that I was wrong about deficiencies but, hey ho, I was severely deficient in D and iron, and very low in range in everything else.

I was prescribed D3, and my level increased within 3 months and was "in range" (still low), so I am obviously "cured". I have been on prescribed iron for the last 3 months. The endo wanted me to supplement each of them individually so as to check which symptoms belonged to which deficiency - great in theory, but a nightmare when you feel so rubbish.

Having had no D3 for nearly 2 months, all the dreadful aching, twitching etc. has gradually come back with a vengeance (it had never gone completely anyway, but had lessened).

My GP will only do blood tests if the endo requests it, so I emailed the endo. She rang me, and was not happy at my request to re-test anything again, but agreed to test vitamin D as I feel so bad. I expressed my concern at my continuing problems (which I have done at every appointment), and wondered if absorption could be an issue if I still had low-in-range or deficient results.

Apparently, if I have an absorption issue, it is not associated with having Hashimoto's, and is something I need to re-address with my GP. She said that it is beyond her remit as an endocrinologist. I guess I should stop reading stuff on the internet, what do I know.

I am so fed-up with having to beg for anything. I know I need to take responsibility for my own health, but wish I could have just a teensy bit of support from doctors to ensure that I actually do it properly.

56 Replies

oldestnewest
  • Beansmummy, my endo actually told me ferritin, vitD, B12 and folate would be fine cos my FBC was okay. When I persuaded a baby GP to test them vitD was <10, folate deficient, B12 low and ferritin very high.

    I had loading doses of vitD3 followed by maintenance doses for 8 weeks until I retested just >100 (75-200). Six weeks after I stopped supplementing hip and knee joint pains made sleep difficult so I started (and continue) supplementing 5,000iu daily which sorted out the pain in a couple of weeks.

    My endo ordered a coeliac screen to rule out gluten-intolerance which can cause absorption issues and asked my GP to refer me to a gastroenterologist but the referal was never made, probably because I didn't chase it up. Many Hashi patients benefit from a gluten-free diet even if they're negative for coeliac disease.

  • I've seriously been thinking about going gluten-free, but it isn't something I want to do. I can see my doctors wetting themselves if I even mentioned it to them. I am still clutching onto the stupid idea that they would actually like me to feel well.

    My vitamin D was 20.7, and went up to 86.0 within 3 months on what was a fairly low dose of D3, they "forgot" the initial loading dose. The endo and her Professor said the reason it was so low was purely dietary, despite never asking what my diet was like. I have disagreed with her about the reason, but it falls on deaf ears. She said this week that the fact it had gone up so well proved that I didn't have a problem with absorption (even though other things were low/deficient). After being off the prescribed D3 supplements for several weeks now, I strongly believe my level has gone down again because I feel so rubbish again (getting worse by the day), hence my request for another test.

    It was interesting that you thought it was about 6 weeks after you stopped that your symptoms got worse, it was about the same timescale for me. Once I have the results, it will either prove I am right, or keep me quiet forever more <no chance>

    I realise that there is no point in trying to discuss it any further with her, it makes my head hurt when I keep banging it on the wall.

  • You mention that your B12 was low - so wondered if the twitching could be linked. B12 needs to be near the top of the range around 800/900. If under 500 neurological symptoms can occur ....

    b12deficiency.info/signs-an...

    Lots of good information - and lots of reading :-) I take 10,000 IU's of VitD as I have Crohns. There is a research paper on Pub Med about VitD and Hashimotos - search VitD Hashimotos Pub Med. A research paper will come up - hopefully - of some research done here in Crete - posted sometime ago by Rod.

    Hope you soon find some answers....

  • My B12 was 267 (180-900), so my GP said that it would be unethical for her to treat me with anything as it is in range. There is no acknowledgement from her or my endo that being low-in-range in anything can possibly be detrimental. They will not re-test because there is no reason to do so.

    However, I have already got some B12 supplements (recommended on this site), but decided not to take any until I knew for sure if the D3 was responsible for my symptoms. Once I'd stopped taking my vitamin D3 and was "in range" and "cured", the GP started me on iron. I thought I would give that a good go for a while and hope that I would miraculously feel well.

    I'd suspected B12 as being a problem, particularly as we have PA in our family. I am low-in-range, so obviously have to sort myself out, but haven't wanted to muddy the waters by taking everything all in one go. I think I am past the point of being reasonable now - I am too darned nice to these doctors, but I wanted them to be on my side.

    I have a lot of B12 deficiency symptoms, but then they are the same symptoms as for iron, D and goodness-knows-what else. I am clearing a space in the cupboard for all my Amazon orders because I am pretty sure that I will soon be taking just about everything.

  • Hi BeansMummy,

    I am sorry you are having such a tough time of it.

    Who knew trying to get well could be so hard ??? :-)

    I can only sympathise with the testing issue - been through it all myself - doctor even told me he could not believe I had PAnema even though he had the results back in his hands, as I did not have macrocytosis ( he is about 20 years behind the research - but that is what you get on the nHS!)

    Well done for getting the tests done, that must have been a struggle.

    I am self medicating on the D3 and it really does help ( doc gave me a week of 20,000 and a week of 800 and never contacted me again, probably because he said I could not possibly have a vit D deficiency for about 6 months, until I did a private test showing I was 8.4ng/ml with deficient being anywhere below 20ng/ml)

    What have they suggested regarding the low B12?

    Have they tested you for Intrinsic Factor (IF) antibodies or Parietal cell(PC) antibodies? - This is a test you should really have - it would help clarify if you have PA also (Pernicious Anemia) and if so you will require replacement injections for the rest of your life, as you will be unable to absorb it from food.

    Doctors, in my experience, do not like to be questioned, and they do not like it when you know more about your illness than they do, but as they are so unwilling to assist you in your recovery, self education is the way to go.

    If you are interested in finding out more about PA - there is a forum here on HU, where people can help you and there is a questionnaire on the Pernicious Anemia Society ( THE experts on PA globally) website that you can print off and take to the docs - if you score more than I think 70% it is a sure sign you might have PA.

    I cannot understand why they are not chasing you up to have further testing. They have identified you are deficient, or low, but they have put no effort into why this is.

    Best wishes, and stay strong, and keep fighting for your own health - as the NHS seems reluctant to do so without your strong resolve.

    Big Hugs,

    M

  • Thanks for your post :) It defies belief that you should have to fight to regain health, and I get so frustrated that there seems to be no ability for anyone to join up the dots, and realise that perhaps all my general ill-health could possibly be related. I am currently under the care of an endocrinologist, a cardiologist, an orthopaedic consultant surgeon, and a physiotherapist (I don't have to see the consultant neurosurgeon any more). I think the GP has a little cry after I visit her. My husband just told me that he thinks she probably has a little cry before I walk in too.

    The doctor told me I cannot have PA because my B12 was in range, albeit low. My GP told me to eat Marmite. I will check out the PA Society site, I think I've looked at it before because I remember doing an online check and scoring very highly, which is why I requested B12 testing at the beginning of the year. The endo only agreed to test B12 because of the PA in the family. I do not believe my GP will take any note of anything I present to her any more, particularly if it "came off the internet", however good the source might be.

    I will have to check my records as to whether they tested the IF and PC antibodies, but I bet they didn't.

    I do not think I would be able to keep positive without this site, because knowing that I can sort all this stuff out myself, without help from the NHS, gives me some hope (only on a good day). When the endo asks me if I get depressed (usually because I am crying by the time she asks me), I always reply that I don't, but that the sheer frustration in trying to get it dealt with and still having to cope with the physical issues really gets me down. She seems to understand that, but still doesn't do anything!

  • Marmite!

    I have to let you know that before I was officially diagnosed with PA in 2014, (although I had low B12 at 103 in 2011 and the odc ignored these results, I ended up with B12 of 65 in 2014 and unable to walk...) I ate marmite, and meat and took ultivitamins which contained 100% B12 and 100% D3.

    I am deficient because I cannot absorb it and it sounds like you are very similar.

    you can eat as much marmite as you like, it will never get into your system.

    The fact you have PA in your family is a red flag. PA is known as a RARE illness, and therefore often overlooked. Having close family members with PA means you are more likely to get it.

    For me - I was happy , healthy, fit - doing martial arts and rowing etc etc and wham - the autoimmune PA kicks in, and I get slower and more tired and everythign aches, but you carry on, going to the docs and complaining - I thought it was my thyroid meds, they refused to test for B12, refused to test for vit D - got to me being in a wheelchair and I borrowed some money to do the tests privately and what do you know - I am deficient and they finally start to treat me.

    I really really reccomend badgering the docs to do the PA test ( for intrinsic factor and parietal cell antibodies) - looking at your bloodwork is not enough. I did not have the anemia or the macrocytosis, due to my overly good diet and intke of folic acid, which hid the PA - the IF antibodies came back positive and the B12 came back 65 but hte haematologist noticed the doc had done a B12 test and it came back low in 2011, when he did the test in 2014, but I had been told my results were fine back then.

    I really hope you do not have PA, but it is easy to treat. If not treated - and with your vit D deficiency and your iron deficiency, thing could turn out badly, like they did for me. Your myslin sheath which protects your enrves, erodes without B12, and the neurological symptoms do not just cover brain fog, stumbling, dizzyness, tinnitus, they include constant pain, tremors, and blacking out - I haev all of these, although they are starting to lesson, but the pain is not.

    The pain specialist I saw recently said it could take a few YEARS for my mylin to repair itself, IF it ever does. All because my B12 deficiency was left untreated.

    I wish you the very best, and you are right to try one medication at a time and see what works for you, but with your family history I urge you to have the PA test, perhaps if you could save some money - the Pernicious Anemia Society have links of places that do reliable and discounted for PA society members, testing, it is a simple blood test, no need to fast or take it at a certain time of day.

    If you do turn out to have PA - please do visit the PA forum here or if you facebook their facebook page has lots of info on how to get your B12, as presently they only allow once every 3 month injections, which many find to be to little, but you can cros sthat bridge if and when you need to.

    Best wishes for your recovery, and Big Hugs,

    M

  • I will get something done, that's for sure. I had a check through my blood tests results, they didn't do the other blood tests you mentioned, but that doesn't surprise me.

    I am veering towards getting private blood tests done for everything, at least I can ask for what I want then. I think my GP and endo are tolerating me nowadays, and no amount of sensible discussion will goad them into doing any more. Goodness knows why I feel guilty for going to the doctor to talk about my tingling/numb/painful hands and feet, but that is what it is like now.

    We had a discussion on here some time ago about how much Marmite you would have to eat to get enough B12, I think it was an unmanageable amount!

    Thank you very much for your advice, I will start lurking on the other forum :)

  • Yes, well I think that is where we all are. I have very low Ferritin levels tested week before last (for the first time ever and at my request) it is 13. Endo did not want to even consider this and GP is happy for me to pay for my own Floradix (which I saw good reviews of online) and did not suggest prescribing anything, he emailed me a leaflet on getting iron through diet (bit of a cheek, because my diet is amazing and he knows that). However, just to say I have been taking high amounts of Vitamin D3 for years, now I take 10,000 iu daily. Long story but I was diagnosed with MS some years ago and follow all the recommendations of George Jelinek. I keep my levels at those of someone living in the tropics. Vitamin D is very important with this condition (and probably important to anyone). I would advise that you take it daily permanently, you could always keep it to 5000iu daily if you didn't want to take as much as me. I buy it from USA and can always send you details. The doses available in the UK are way too low, although it's possible that they have improved since I last looked.

    I am on a mission to get my thyroid problems sorted out at the moment, I do get muscle aching and some twitching which I always put down to the MS but I think it could well be the thyroid problems, so not sure Vitamin D has much bearing on these symptoms.

    I hope this helps a little bit. Good luck. Caroline

  • Blimey, it must be hard chucking MS into the mix with a thyroid problem as well :(

    Don't you just love the patronising nature of doctors sometimes - I don't like this assumption that your diet can always be at fault unless they have actually checked it. I bet you were so grateful for the leaflet! I bet your doctor gets funding for issuing dietary advice. I ensure my diet is as good as I can, because then no doctor can ever blame that for any problems (not that it stops them).

    I know I will end up taking D3 more permanently, I just thought I would go along with the endo and supplement one thing at a time to see which one would sort the symptoms out. However, after months and months and months of towing the line, putting up with feeling generally rubbish, and then being told that they won't redo blood tests to check anyway, it seems pointless.

    I loved your phrase about being "on a mission", because that is how I would describe me at the moment.

  • Thanks, yes it took many years to come to terms with the shock of MS as well. But that isn't really a problem as I have it well controlled and much more confident now. What I don't understand is this: there seems to be a bit of a common thread with the Endos saying let's try one thing at a time. What the HELL is that all about? surely it's best to get everything optimum, especially if some processes rely on things like ferritin, B12 etc to function properly.

    I nearly choked when my GP said he would email me the leaflet about iron and diet. Having said that I have to admit I did learn one thing from it, and that is that drinking tea with a meal hinders the absorption of iron, and I am a big White tea drinker so I will make sure I don't drink it with meals.

    It seems there are loads of us on a mission - thank goodness for this forum and the internet!

  • Just a little concerned that you are having to wait to take B12 as you are taking VitD - so that you know which is helping. It will take several weeks/months for the benefits to accrue. I started T3 B12 and D3 at the same time - and will always need all three - so I think it is the combination that works and NOT just one single thing....

    Did you read the website I posted ? It mentions that in Japan the B12 range is from 500-1300 - guess they know a thing or two !

    Also the protocol in the NHS is three-monthly injections - not enough. This is due to costs I feel. In the 80's it was monthly - 90's two monthly and now 3-monthly. I am lucky to live in Crete and can buy my injections for cents and go to the local clinic for the jab - which is weekly - sometimes two a week - depending how I feel. Am working up to doing it myself. There are 47 pages on the B12 website I posted - demonstrating how to self-inject :-)

    Martyn Hooper - wrote Pernicious Anaemia The Forgotten Illness and B12 Deficiency - I believe you can download it from amazon if you have a kindle. He is a fellow sufferer.

    Hope you soon feel stronger....

  • Thanks for the website link, Marz - yes, I did read it. I also remember telling my GP that if I was in Japan, they would be treating me but, again, she said it was "unethical" for her to treat me for something that (in this country) is not seen as a deficiency.

    I can tick many of the symptoms, but then they are identical to many of the symptoms of vitamin D or iron deficiency, so it will NOT be acknowledged that B12 can be in any way responsible.

    I am going to start taking my B12 today. My husband just gave me a huge hug and said "about time too". I think all these posts are sinking in to my foggy brain more than ever, and I realise that I really need to take responsibility and to stop relying on the holier-than-thou doctors.

  • That is one big and important step you have made. Congratulations... Once you are taking B12 further testing skews results so will not be of value unless you stop taking it. Expect you know this already - but if you are like me you can easily forget stuff we read here :-)

    Maybe you should send the video to your GP - on the B12 site - of the Doc who was doubly in-continent and was diagnosed with some degenerative brain disease. He was almost paralyzed and dying. B12 brought him back. He is now back at work on crutches....

    Hope you soon feel better - I do think you have been badly treated....

  • Many thanks, Marz.

    I wonder what my GP (and every other doctor who disses us) would make of the video. I have never taken in any documentation to back up anything I say, I cannot imagine that they would take any notice - I will check out the video later.

  • I watch it from time to time to remind me how important B12 is - once seen never forgotten..... I really believe that B12 comes under the heading of Preventative medicine - and that is something the NHS are not so well trained in. They want to give you a Rupert Bear sticky plaster called a drug and hope you will soon be better - box ticked... :-)

  • So true. I have lost count of the amount of medication I have ended up taking for individual symptoms, without the root cause being looked at.

    Things are changing big time from today, thank you so much for your help and advice.

  • :-) :-) Wish Functional Medicine would become established in the UK - and everywhere. Institute of Functional Medicine in the US has a website by the same name. They do just exactly as you said - they look for the root cause.....

    Hoping you soon feel at your very best.... :-)

  • Caroline, muscle pain can be due to low magnesium. Magnesium (not oxide which is hard to absorb) should be taken with zinc as they are co-dependent minerals and both are synergistic with vitD3. Most of us are likely to be magnesium deficient so its probably not worth paying for expensive cellular magnesium tests.

    Twitching may be due to low B12 so worth asking for a test.

  • Thanks very much. I already take magnesium (chelated) and around 2 months ago I doubled up on it. And I take zinc too. I am a walking supplement ad. If you shake me I rattle ha ha! I have just started on sublingual B12 too, my last blood test a few weeks ago showed it was 450 ish so I am going to get it higher.

  • I asked about having magnesium and zinc tested. No chance! I will be joining you in the rattling game soon :)

  • It felt like I was eating my own body weight in supplements last year, Caroline. Paid off in improved health though and I've cut back the 'B's for one B complex.

  • Hi Clutter,

    I have to agree about the magnesium. Thanks to HU I found out the magnesium (oxide) I was taking was pointless. I have then tried magnesium Citrate which seemed to offer better results and have reently switched to a mixture of Magnesium chelated and megnesium L-threonate ( mainly because the L-threonate is so expensive I cannot do both doses a day with it) and feel much more benefit again.

    Currently I take:

    daily:

    magnesium

    zinc

    selenium

    every other day@

    Vit D3 5,000IU

    L-Methlyfolate

    Monthly

    1 x B12 hexacobalamine Intramuscular injection

    along with all the other pain meds (gabapentin, tramadol, diazapam)

    My diet has never been in question, although I feel perhaps it should have been, when I was first pregnant I was very anemic and htey did not question the fact I was a vegitarian at all, which perhpas they should have.

    since my first boy, I have become a meat eater, but I have daily nutritional smoothies to help regulate my metabolism and help ensure I get the nutrients I need, especially important since I started taking the pain meds, as I now feel sick all the time and not at all hungry ( morning is grapefruit, pineapple, mango, kiwi and ginger - all fresh, lunchtimes is banana and yoghurt for my potassium, and night times is kale,celery, parsley, cucumber and aloe vera for a clense)

    I have always eaten low fat, high fibre, freshly made meals, my only bad thing is I love bread and cakes, and used to make them every week, but due to the pain had to stop, and cutting back on the Gluten is probably a good thing anyway, but I do crave the bread...

    I have always been sporty and always eaten well, and it irritates me no end that my body just gave up absorbing all the lovely vitamisn I feed it ! LOL :-)

  • Mrs. S, it seems an awful betrayal when you looked after it so well except when you think how much worse your health could be had you not been so careful.

  • Yep, need a flipping mortgage to pay for it all...

    Did you know that magnesium oil is brilliant to rub on sore or aching muscles? I find it very good for my shoulder cramps. You can get it in Holland & Barrett.

  • I know now, Caroline but how I wished I'd known that last year when I was in agony.

  • Awwww! Yes, I wish I'd known about it years' ago too. It was actually an MS nurse who told me about it a couple of months' ago, I didn't even know it existed before then. It's amazing stuff. Also taking enough magnesium supplements makes a big difference. When I am due for a dose my shoulders start cramping (like an alarm clock).

  • <makes note to add magnesium oil to shopping list>

  • Epsom salts in bath water and have a good soak! The magnesium is absorbed through the skin I use it for restless leg syndrome.Tip...order in bulk works out much cheaper than those silly little pots was costing ne a fortune a pot a night, Member onnhere put me onto bulk buying from amazon lasts for months .x

  • Funnily enough, my order for Epsom salts is due tomorrow, thought I would give it a try after reading about it on here. I might empty all my vitamin supplements into the bath and swim around in the whole lot.

    I didn't realise it was useful for restless legs, I get that too :(

  • Hi yes as is usual for restless legs everyone is different how they react to things.Some people with mild symptoms get some relief using magnesium supplements , oil and soaks.For myself with severe symptoms the only route is medications but I still do the magnesium as every little helps x

  • that is hilarious! we could always drown ourselves in it!

  • This thread has been such an interesting and informative read for me! I have been struggling with many symptoms and drugs for three years now. My GPs are all good in different ways but none would test my vitamin D level or do more refined searches or accept that being low in range for FT4 or Serum B12 was not good or right for me.

    I have Rheumatoid Arthritis (RA) and they are very good at advising me on the various treatments and they know that I am very allergic to many things including cytotoxic RA drugs so help me to stay off drugs where possible. So I try and they try but in the end I've had to go it alone with researching nutritional stuff and getting myself privately tested for vitamin D and FT3. I was lowish within range for B12 at 380 so decided to start B12 sublingually about a month ago - one a day. No change to tingle factor or burning, wet sensations in my legs and feet yet. My D level was 28 at the end of last summer and is now 59 after a winter of taking AdCal D3 on prescription and adding two D3 capsules. The private clinic said I should stay on it all as still low end of normal range. I think I could probably increase it all and add other things but while I'm off all my RA meds (side effects got too unbearable) I'm trying to diet and exercise really well so I can work out what is making the difference once things improve. I don't have any qualms about takjng supplements without my GP's' approval because they are basically fine people but ever since finding out for myself my D level was at the bottom end of insufficient while being treated for secondary depression I have realised that they have their big limitations!

    I need these GPs too badly to fall out with them and so I just plough my own furrow and use them when necessary (for my RA) now. This means they respect me more when I do have something I need from them rather than continually hassling and pushing them. They aren't going to change and I need to find things out for myself without waiting for years battling with them to up their game. Life is too short!

  • Hi, I would strongly recommend you increase your Vitamin D3 intake, if you see one of my messages I have mentioned it. You do need to get it higher and the doses available in the UK are way too low. I get mine from USA and can recommend if you like. Wet legs, does that sound neurological?

  • Yes I feel it is neurological too! But I sought a second opinion from a connective tissue specialist and he said he felt that my GP was spot on to identify it as Raynauds/ circulatory secondary to my RA. I was put on a vasodilator drug earlier this year called Nifedipine and this did seem to make a difference but I had to come off it because of severe ankle swelling and folliculitis. I also have a strange rash on my feet, ankles and calves that comes and goes - so could be Vasculitis but the dermatology professor saw photos my GP sent him and diagnosed it as Scurvy!

    So my faith in consultants is dwindling but the second opinion rheumatology professor made the most sense of anyone yet. He said the certainties are autoimmunity and RA for me - plus I have hypothyroidism of course or I wouldn't be here!

    My own consultant rheumatologist won't acknowledge the icy legs or burning feet as being a rheumatology matter and right now it is raging again and I'm off all my meds so can't blame them - but it seems coincidental that the icy wet legs have come back now I've stopped my RA meds. This is why I got myself retested for my D levels and started taking B12 sublingually - I'm hoping I can self-treat as I'm so bored of doctors and their refusal to look further into this themselves. I've never had a scan of my joints or CT or MRI or a nailfold capillarly test to confirm secondary Raynauds. They tell me this sensory stuff isn't neuropathy - it is circulatory but I really don't see how they can tell without testing more thoroughly? I see my consultant again on 1st of August and am really hoping to remain resolute that I don't want to try any more disease modifying antirheumatic drugs (DMARDs) for the time being - having had nasty responses to three so far.

    I am taking 4000 iu in capsules and my one AdCalD3 (400iu) per day. Do you think I should be taking more? The private clinic said for me to take 3000iu or 3 capsules (which would be 6000iu) per day but I wasn't sure which they meant. I will try increasing my dosage as the weather here in the far north of Scotland isn't exactly conducive to vitamin D harvesting right now! I buy D3 Doctor's Best off Amazon but with this and the B12 (Jarrow's) I'm wondering if I should buy in bulk to save money?

  • just a quick reply reference the Vit D dosage. I take 10,000 iu daily. That came about because I was diagnosed with MS some years ago and after discovering a wonderful doctor called George Jelinek who runs a whole "overcoming MS" project that was what he advised. He says best to keep levels to those as if you were living in the tropics. I would recommend you take at least 5000iu. I believe it's best to keep it much much higher than any "normal" range they stipulate in the UK to have some kind of protection with autoimmune disease. You have to take tens of thousands of iu's for it to be anything like toxic.

  • Thanks that's really helpful Cario. I will increase my dosage from now on. I live in Orkney where MS is at it's most prevalent in the world. It isn't thought that this is due to Vitamin D deficiency anymore but I am making an educated guess that being deficient or even insufficient won't help. I did go to a talk by an Italian rheumatologist recently, who recommended that all people with autoimmune diseases are extra vigilent about making sure they get enough from both sunshine and supplements - and should have annual checks for this too.

  • I know what you mean about not wanting to fall out with your doctors, I guess we were brought up to believe that they all-singing, all-dancing and all-knowing in everything. I think I will have to go down the private blood testing route, I even googled local clinics last night. I can cope with traditional blood tests, but not the home pin-prick testing other people on here do.

  • Well I live in a very close-knit community and count both my GPs as friends. The man is very professional so I'm not sure he'd count me as a friend - but I like to think he would. I haven't been brought up to have a very high view of doctors really - I just think they are very well remunerated professionals - some of whom are dedicated and just "have it" where many others are just bored and can't be bothered to look beyond their next coffee break.

    I'm lucky that mine both "have it" and are curious and inquiring to a degree. However I have to rattle their cages sometimes and lately have felt it safer to go-it alone than to fall out with either of them over stuff such as vitamin deficiencies. I told them about the private testing and they both got quite defensive so they know I won't put my health in their hands entirely. But you know I really think this is fair enough. I don't want to just be a passive recipient of their Big Pharma products and play the victim role. I like knowing more about what I'm putting into my body and making educated decisions myself with their support and advice where possible. They were actually the ones who were squeamish about me injecting a cytotoxic drug into my belly for a few years until a few weeks ago but this might have been cost related in part! So I'm quite pragmatic about drugs and needles too.

    I just felt I would trust the private tests more if they were done by a health professional than if I did them by home pricking myself. However I wouldn't be at all squeamish if there were no other option and this time it was much more expensive so this might become the better option soon!

  • I will ensure my doctors know what I am supplementing, but I realise that they will never agree to more blood tests, and I think I am resigned to it. I will keep them on "my side", because they are nice enough people, I just feel disappointed that I don't feel they offer any support or acknowledgement of anything. They seem to have the "take your little white pill, it will cure everything" idea.

    My endo agreed last week that she would book an earlier appointment for me (my usual 6 monthly one had been cancelled and rebooked for 2 months afterwards, no-one knows why :( but nothing ever surprises me any more). I was very excited when I received my new booking in the post this morning - it is the same late appointment. What a waste of someone's time and yet more NHS money.

  • That is really annoying and disappointing isn't it? I had to fight like mad to see a dermatologist despite my GP referring me. Then I saw one after four months in Aberdeen and he got all overexcited about some red lumpy thing on my chest and took two biopsies. A few weeks later my GP confirmed that this was just a bit of eczema! Then the same chap looked at photos of my legs and diagnosed Scurvy! So I've given up pushing to see specialists - I feel they are overrated and just confuse matters further.

    My rheumy does now see me as specified at each appointment because I kicked up such a stink when I was diagnosed and then he didn't see me again for nine months that they all know it's better to stick to the specified plan with me now!!

    I'm fairly sure that the tingling and rash on my legs go together and are some sort of Vasculitis as it is worsening again now I'm off my immuno-suppressant drugs but I feel I'll just have to keep this thought to myself for the time being as GPs seem to know even less than me about all this mixed connective tissue stuff.

  • Scurvy!!! I'm impressed, I shall fight for that as a diagnosis for me too, it would look good on my medical file as something a "bit different"!

    I daren't start googling connective tissue information - my endo requested my GP to look into that too ages ago (no, that didn't happen either and I didn't chase it up as I was feeling so grotty - I only just noticed it on an old letter).

    The more this whole situation goes on, the crosser I feel. Maybe I will print this whole thread off and give it to my endo and GP.

  • Do you have Graves or Hashimoto's or if not why do you see an endo? I have never seen one but having read many posts on here I have concluded that this is a probably a good thing! The woman GP phoned me about the Scurvy diagnosis and said she had been reading up all morning to see whether my RA drug might have inhibited my absorption of Vitamin C but hadn't got anywhere. I was rather touched that she tried so hard but explained that it had all just been another drug reaction as the man GP had correctly surmised. Not so sure now as the spots in question come and go and tend to reflect the nerve pain and wet sensation in my legs. I think Scurvy might have been a lot easier to sort out than whatever it is that ails me!!

    Yes it would be fun to give this thread to our health professionals wouldn't it?! Why not - it might teach 'em something after all! Twitchy x

  • Scurvy would have been a lot simpler to have, I am sure!

    I was despatched to see an endocrinologist when I was diagnosed with Hashimoto's around 3 or 4 years ago. I was never given any information about anything, and thought it was an easily-treatable condition (I have underactive-thyroid family members who maintain they have no problems so believed I would be the same).

    I had six-monthly appointments, plus scans, several fine needle aspirations, occasional emergency appointments, always saw a different doctor, was always told my blood tests results were normal (was taking levothyroxine) and never questioned any of it. I occasionally mentioned ongoing tiredness etc. but, looking back, was given the placatory pat-on-the-back and sent on my way.

    I gradually presented with more and more symptoms, and so my never-ending circle of doctor appointments started. Finding this site made me realise that there was a lot more to Hashimoto's than I knew, and I only found it when I started googling my symptoms. I totally believe that they are due to deficiencies or being low in range (as proved by blood tests), perhaps through absorption problems, but this will not be acknowledged by doctors let alone getting adequate treatment.

    I have been lucky to see the same endo for my last few appointments, and she is a lovely lady, but I sometimes think that she is out of her depth with me. She actually tested my T3, as well as TSH and T4, at the beginning of the year when I asked her too, and my results were good (I posted them here for comment).

    I feel a lot more positive after posting my original post yesterday, I am so grateful for the advice.

  • Thanks for explaining. Are you based in the UK? I thought it was unusual for people who are underactive to be refered to an endo but perhaps it is to do with the severity of the Hashimoto's? I have been on 100/150 mcg Levo for about 12 years I think. I have phases of wondering if my RA symptoms could have related to this as increasingly I'm sure something else is going on with me apart from RA. However, despite a low in range FT4, my GPs insist this is not so as my TSH is only 0.1 presently which is slightly under range if anything. I did read a book by Anthony Toft about this and showed my GP the para that said someone with my readings should try T3-T4 mix such as NTD but he was having none of it!

    Good luck with your own issues I hope they can be sorted out. It might be worth asking to be referred to a connective tissue specialist or an immunologist if your gp can be persuaded? Twitchy

  • Yes, I am in the UK. I was under the impression that I was referred as I had Hashimoto's, and assumed that it was routine. I have no idea if I was ever classed as having it badly, as I never asked what my original blood test results were. I am only on 75mg levothyroxine, I'd been on 50mg for a couple of years and it was increased last summer as I was feeling so unwell. It is only in the last year that I have been asking for printouts of my tests results - luckily, my GP prints everything off now without me even asking her.

    I have been having problems with a frozen shoulder, torn tendon (for no reason) and shoulder calcification, and it was my orthopaedic consultant who has mentioned asking my GP to check my magnesium and zinc, particularly as I have had pain in other joints. There again, I have a lot of pain all over (supposedly my vitamin D or iron deficiencies). I remember another GP ages ago testing me for some sort of "arthritic" issue (I have it in one wrist already), but was told it was fine. I will chase up exactly what that was though, as I now know that accepting "normal" isn't necessarily so.

    I don't really know enough about RA - is it in any way related to being hypothyroid as well?

  • Rheumatoid Arthritis is a systemic autoimmune disease affecting the synovial joints although it can go onto affect any joint, area of connective tissue or organ. Usually people will experience pain and swelling with heat in the affected joints. Generally it affects sufferers bilaterally (ie both wrists, both knuckles or knees) and can be hard to diagnose- although apparently mine was text book synovial swelling - but it still took nine months! It is important that it is picked up and treated early because it can do significant damage to the joints - leading to immobility and deformity. There is no cure but there are disease modifying antirheumatic drugs (DMARDs) that can slow down the disease activity - however these are powerful drugs with potentially serious side effects and RA can only be diagnosed by a rheumatologist. It can affect people at any age but most commonly affects women and people between the ages of 30-55.

    A lot of people with RA also have thyroid problems and other autoimmune diseases because once you have an autoimmune disease it means others are more likely. I seem to be acquiring them by the gallon!

    It is certainly not common that someone with Hypothyroidism/ Hashimoto's gets referred to an endo. Most people are diagnosed and treated by their GPs only as far as I know. I've only really learned that people struggle with this condition since coming on here - I just took the meds (Levo) and never really thought about it at all until I got RA! From the numbers of people on this site I would say that thyroid problems are quite common and I know several people who take Levo and never think much about their thyroid condition but I'm learning that some struggle more.

    There are many other types of inflammatory arthritis as well as the non autoimmune and more common type which is associated with ageing - Osteoarthritis. Hope this helps.

  • Oh dear, another auto-immune issue, not good. It doesn't surprise me that it took so long for you to be diagnosed, nothing surprises me any more, and it sounds painful.

    I have a relative who informs me that doctors know what they are talking about, and I should listen more.

  • Doctors are only human and can make mistakes same as any other professionals. I tend to sit somewhere in the middle on this matter because it was my GP who tested me for RA because of my bilateral symptoms (I couldn't walk up or down stairs or drive or write because of the excruciating pain in my knees, wrists and knuckles) and then as soon as he saw my blood results he referred me straight to the rheumatologist and put me on one of the less toxic DMARDs - which I know now is very unusual.

    It was the consultant rheumy who dragged his heels because my symptoms were by then masked by a steroid injection. So you see I have a lot to thank my GP for and it isn't his fault that I'm very intolerant of all the drugs I've been put on to date.

    I am guessing your GP must be quite unusual to have referred you to an endo at all.

    I've always seen the Hashimoto's as the least of my problems but there again, if I'm to go by people's views on this site I might be wrong. So I try and keep an open mind, do my research into all forms of autoimmunity and not expect doctors to be magicians or experts in all matters. They are generalists and I keep a healthy scepticism despite generally having faith in them. I'm learning that an awful lot of autoimmune problems come back to the gut and what we eat and drink. But I'm learning very slowly because I never did any science at school so it's hard!

  • I do like my GP, I just think all this auto-immune/thyroid stuff is a bit over her head and is seen as a bit airy-fairy. I like my endo too to be fair, but I think they are both dragging their heels.

    The treatment for other things I've suffered from recently has been pretty good (apart from enduring repeated GP/hospital visits, and being moved from one waiting list, to the next, to the next) but only for very "black and white" problems.

    I had to have spinal neck surgery a couple of years ago - my MRI results were very clear, no discussion, the problem was serious, I needed surgery and that was that. I didn't have to google stuff, make suggestions to a doctor, or query whether they were right. We shouldn't have to do any of that with Hashimoto's or other auto-immune diseases either really.

  • Gosh that's quite heavy duty stuff BeansMummy re the neck surgery. But if you had RA or inflammatory issues with your mechanical problems it would probably have showed up in your blood as a high ESR or CRP and also would show in an MRI. It usually starts in the small joints i.e knuckles, fingers, wrists, toes and ankles. It is a serious disease, as are all the inflammatory autoimmune types of arthritis such as Lupus, because they can affect your lungs and heart.

    If I were you I would ask for copies of all blood work and see if your inflammatory markers (ESR and CRP) are included and are raised as this could indicate that there is something more going on than just Hashimoto's/ Thyroid disease. Ask for these to be taken - they certainly shouldn't mind the ESR being done as it is a very simple low cost blood test. If you have some type of inflammatory arthritis then it would explain why you feel tired and ill because these are systemic rheumatic diseases that can make people feel very tired and flu-like as well as causing much pain.

    Your endo might not be looking for connective tissue problems but she should be alert to other autoimmune problems and suggest that you are referred on to a rheumatologist if your blood shows signs of inflammation.

  • I am going to find out what the tests were I had a while ago and, more importantly, what the results were. I had an MRI of my neck (hence the surgery), and another MRI of my wrist showed arthritis which will eventually need surgery apparently.

    I do not believe that my endo will even consider checking for any other health issues, but I look forward to asking her at my next appointment. I am sure she will be grateful for something else to get narked about.

  • Well you can at least count yourself lucky having an endo to nark I suppose?! And it sound to me as though your arthritis is wear and tear/ mechanical rather than inflammatory/ autoimmune. These show up differently in MRI and x-ray so I'm sure you would know if you had something more systemic going on - but worth getting your inflammatory markers checked anyhow. Good luck!

  • I can't comment to help your situation but REALLY wish they wouldn't put patients in this situation, it's bad enough feeling very ill let alone having to go to someone that knows nothing that will blooming well help us AND prescribe drugs they don't know much about.

    Hope you're on a better path now. :)

  • Thanks :) I feel a bit more positive about it all than I have done in the past, and my GP will be hearing about how fed-up I am with all the physical problems when I have my next appointment, and I ask about whether someone might be able to join-up all the dots for once.

  • Yes, good luck :)

You may also like...