Hi everyone, was just wondering if anyone was in a similar position or had had a similar experience and could offer up some advise....so i have hashimotos, i also have low vit d and low ferritin, i am on zero medication...i have attached a copy of some blood work which as far as i can see indicates problems...my gp and endo say it is fine! They won't entertain the fact that i am so horribly ill or medication or even that i have horrible symptoms....my gp especially made out i was a hysterical hypochondriac and i think since then my fate has been sealed with anyone endo or other that has looked at my medical records and what ever notes my old gp chose to put on the system, i refused anti depressants time and time again from her and i feel like she took this personally, anti depressants were her go to treatment for everything i neither need nor wanted them even though she pushed and pushed, currently i could sleep all day everyday....have severe air hunger/breathlessness...constant palpitations..stomach is in tatters...hairs falling out to the point i have visable patches and thats just the tip of the iceberg, i have been completely gluten free for years aswell, i have tried to be proactive and supplement where i can with what i can but every day i feel worse, i just cant imagine living the redt of my life feeling this unwell everyday, with no support from any medical professionals, i recently changed gp and was hopeful about her attitude but when she read the previous gps notes i feel like her attitude changed and i am back to square one, has anyone else experienced this with their docters? I am determined to go to my endo app next week and stand my ground but i have no idea what to say in regards to the bloodwork or medication, he steamrolls over the top of anything i bring up as soon as i am through the door, this is a nightmare, any...ANY advise or info or approach would be appreciated, i cant imagine living like this everyday anymore, thanks in advance x
Iffy GPs and ignorant endos: Hi everyone, was... - Thyroid UK
Iffy GPs and ignorant endos
Hi - I am sorry to hear you are suffering, some doctors should be ashamed to use the title!
You say you have Hashimotos - I assume you have had a positive anti-body test in the past? If so, your gluten free will be helping that. You don't have an obvious thyroid problem at the minute, though you do have very low nutrients that could be causing some apparently similar symptoms. Your ferritin and vit d are both abysmally low. Could I suggest that, if it is in any way financially possible for you, that you just go ahead and supplement yourself? I am suggesting this because you are obviously struggling to get anywhere with doctors and your health will be getting worse because of these. You can buy ferrous fumerate /sulphate from chemists, suggest 1 twice per day with 1000 vit c with each one. You need a high dose of vit d - see what capsules or spray you can get - and take around 10,000 iu per day for a couple of months. If capsules, need to be taken with a fatty meal. (I use Better You spray 3000iu from Holland & Barrett, SeasideSusie uses BodyKind capsules). With this you need to take vit k2-mk7 (try Amazon) as vit d increases uptake of calcium and this directs it to bones rather than soft tissue, as well as some form of magnesium.
Alternatively you could get a copy of the NICE guidelines on both vit and iron deficiency (search in top box here for references and copies) and try to work on the GP and ask to be treated in line with them. I would take someone with you to appointments who can be a bit firm and pushy in support of you - doctors are less inclined to brush off 2 people at once.
Your folate and vit b12 also aren't great, but less urgent than the other two.
If you manage to get both these increased towards 100-120 each, then a lot of your symptoms should subside and buy you time which you could then use to try to work with a different doctor to try to get a proper diagnosis and treatment from them.
Good luck
Gillian
Thank you, yeah i have had a positive anti bodies test for hashis, i have been trying to supplement with better you 3000 vit d spray for the last few months and have also bought a magnesium spray and the better you b12 spray to try and bring my numbers up, the only thing the go has ever commented on is the fact my white cells count seems to always be low but she is not concerned by this either, i have in the past struggled with iron supplements as they caus havoc with my stomach but have bought spatone drinks to try and at least help a little the breathless suffocating feeling is horrific and trying to explain to the gp that it is not the same as anxiety is rediculously difficult, thank you for replying and for the advise i will get some k2 and hope for the best x
I know how you feel with the breathlessness i have the same, it is really quite scary, im hyoer with suspected thyroid nodules pressing on windpipe but also my ferritin levels are low, doc refused injections so i am taking solgars gentle iron 20mgs but its going to take ages to build it up on that dose. Docs are a pain in the arse. Everything is anxiety or a virus because they cant be bothered to think and work it out.xx
I'm sorry to hear that, it really is horrible isn't it, is your breathlessness down to being hyper or more so your ferritin? I have noticed that it seems to be a common complaint with thyroid issues but low iron...ferritin...b12 i'm told really exasperated it, i feel like i am in a sauna suffocating all the time just now really horrid i just hope i can bring my levels up enough to notice a difference, hope you feel better soon x
I know mine is to do with the thyroid for definite but alongside ferritin levels its made worst i surpose, i have my 1st endoc app 3rd october but i know what you are going through, when originally diagnosed in the bwginning of august i had 2 visits to hospital via ambulance because i couldnt breathe properly and one visit to a and e and on all occassions i was sent home because i had 99% oxygen so they were not worried. I have ok days and bad days and ive learnt not to panic as that makes it worse. I am determined to get better and i will but i think i am going to buy alot stronger iron tablets tomorrow. Rest also as much as you can. Take care and i hope you get sorted aswell and youre not alone.x
PS - just found reference from SeasideSusie on next post to NICE iron policy cks.nice.org.uk/anaemia-iro... also vit d cks.nice.org.uk/vitamin-d-d...
Thank you Susie!
Gillian
So far I've spotted :
Low in range vitamin B12
Low in range folate
Below range ferritin
TSH over 2 suggests your thyroid is struggling
Free T4 low in range
I don't know anything about sex hormones
Very low vitamin D
Mean Cell Volume is low, suggesting you are (or were) anaemic
Mean Cell HB is what I know as Mean Corpuscular Haemoglobin (MCH) and it is either below range or matches bottom of range.
I haven't paid much attention to the dates of when the above things were true, so you may have fixed or improved some of them.
I think you should start improving your iron levels as a first step. Are you in the UK? If you are, then getting prescription-strength iron pills without a prescription from pharmacies or online is easy and not expensive. I don't know the situation in other countries.
Hi humanbean yes in the uk scotland i have had prescription iron in the past but it killed my stomach they switched it to an alternative iron which made me violently sick, i have bought spatone iron drinks to try to see if i can tolerate them i know they wont be near enough so will keep looking at others to try, my gp wont prescribe any more as the two she tried made me sick, i am supplementing with vit d and b12 currently so hoping that those numbers pick up aswell, thanks for your reply 😊
Do you eat meat? Eating liver helps a lot of people.
Other alternatives are discussed in this link :
dropbox.com/sh/3waycnbzhywi...
It was written by helvella, one of the admins here.
Yeah i eat meat i have tried in the last few months to up my meat intake and have been forcing down chicken or beef liver once or twice a week, i'll have a read of the attachments just now thank you i really appreciate it, my numbers just seem to stay low i have no idea why but i will keep looking into ways to rectify it x
Hi - is it possible you are also intolerant of something else and the resulting gut damage is causing malabsorption? The dairy protein casein, for instance, is very similar in structure to gliadin ( the protein in gluten), and can cause similar problems. Or maybe try a course of good probiotics.
Gillian
You could try getting an iron infusion. As your levels are outside the normal range, this should be available on the NHS. My haematologist said they would do that.
If my ferritin levels fall below what I regard as a reasonable minimum (90), but are still 'normal' so the NHS isn't interested, I get an iron infusion privately from an integrated physician. I'm in Kent so it's no good giving you his details. But you might be able to find one up your way with some fishing about. I also can't take oral iron, so infusions are a blessing.
Hi gemstone88, I can't comment on blooods but I can drs, mine is useless too, before I was diagnosed, had problems with my stomach that became embarrassing for me, totally felt unwell no energy, tired all the time, breathless yawning morning noon and night, several other issues, yes was I made to feel like a hyperchondriac, offered anti depressants too which I refused, finally diagnosed in may and still made to feel like one😬I totally know how you feel, stick to your guns and insist upon being treated properly, see another dr at the surgery if there is one, I'm actually reporting my dr for how he speaks to me and as made me feel, they should not hold the title of dr, I can think of a few stronger words I have felt like using and in his presence, good luck I do hope you get some answers and start the process of feeling better.
Hi Hypo51 i hope you are feeling well now, my docter sounds exactly the same as your experience, she is an arrogant, ignorant so&so...i could call her worse, i have lost count of the amount of times i have left her office feeling humiliated and degraded 🙈 i also have horrid stomach problems and the rest it really does affect every part of your body, the air hunger..breathlessness and palpitations for me recently have been so bad i feel about 100...i have 2 young kids aswell and the guilt of not being able to keep up with them is hard! Thanks for replying, hope you are well x
Yea I'm getting there thanks. Yep me too feeling 100.. my kids are adults don't know how'd I'd cope if they was young still.. don't give up..you will get there.. loads of support and advise on here.. wish you well x
Thank you @reallyfedup123 i have questioned my gp about other possible thyroid causes but she shut me down pretty much straight away and told me the only thing to ever come back off with my thyroid waa my antibodies and thats when she diagnosed me with hashimotos which i know killed her admitting to something being iffy, i don't know a massive amount about central hypo but will try and read up as much as i can before this app the twice i have seen this endo before he completely dismissed me on my gps letter and the fact that i didn't have diabetes which i and everyone else knew but seemed to be the only thing he was interested in, he was a joy!! 🙈
Central hypothyroidism is a condition in which the body is unable to make sufficient TSH to stimulate the thyroid.
Unfortunately for sufferers, doctors assume the pituitary (the thing which creates TSH) either works perfectly or doesn't work at all. They expect TSH to be practically zero in central hypothyroidism. Many doctors don't believe in the idea of partial failure of the pituitary. The other problem is that doctors believe central hypothyroidism is very, very rare. Therefore they don't think of it as a possibility, therefore they don't test for it, therefore it apparently becomes rarer still.
The lack of logic in this is staggering. It must be obvious that the body's ability to create anything at all must vary from person to person because we aren't clones of each other, and some people will produce a lot, some will produce an average amount, and others may produce a little.
Do you have someone you can take with you to your appointment? They tend to mind there manners when there's a witness - especially if it's a man!
Yes my husband has said this time he will come into the appointment with me he has always stayed with our children previously so hopefully him being there will give me a better chance of being treated like a human 🙈 x
Do brief him thoroughly before the appointment, though, so that he knows exactly the out-come you want, and what you don't want, and understands some of the basics of thyroid. 
I had shortage of breath and air hunger when my adrenals were very low from long term very low thyroid. The renowned Dr P prescribed me very small dose of hydrocortisone (5mg) a day but I'm really not sure I would recommend that now. Perhaps read up about adrenal insufficiency
Yes T4 is on the low side, vitamin d is very low and b12 is a little low too (good news is that you might be able to supplement this with tablets as opposed to self injecting, I'd give that a go first). For vit D I take Hux d3 20000 iu weekly and it seems to work - its a POM medicine but you can get it online. I don't think you're the first one to experience this. I think it's a bit weird that doctors would make judgements based on another's notes as opposed to the patients symptoms.... very strange.
Hi, first time on here but I felt like I had to reply to you quickly while my toddler is pulling my hair 
get tested for coeliac disease (IgA blood test) I have had this done but not sure if I have hashis or not as I'm in the uk but both thyroid and IgA bodies are higher, now just waiting for my biopsy on Thursday! Oh and look into AIP as it makes a lot of people feel so much better, there's loads of resources online and groups on Facebook. I'm starting after my biopsy and actually can't wait even though I know it will be hard. Don't take no for an answer from your doctors.. find a new one, I literally do my own research then go back to my now doctor and ask for a load of tests (normally they can authorise unless it's off prescription). Good luck xx
Hi annadel, yes i tested positive for coeliacs about 5 years ago and have been gluten free since, i tried aip for about 6 weeks but i lost that much weight my gp was worried i also started taking pretty severe migraines, i have a minimalist diet just now i would say i make everything from scratch and try to eat as clean as possible, my youngest has pretty severe allergies aswell so we are careful across the board with food, funny thing is my stomach seems to have gotten worse since i was diagnosed coeliacs and not any better 🙈 still have constant reflux...nausea...pain,i hope it agrees with you and you feel better soon! 😊 xx
Hope you contaminate jumping in but all this sounds so familiar. What is AIP. So sorry to hear so many suffering and awful dogs. I have had some appalling ones ink the past. Thank goodness for this site and the folks on it
I went through a couple of Doctors and some unbelievably bad Endo's before I booked myself an appointment with Dr Skinner. He confirmed I wasn't crazy and gave me the confidence to buy my own T3 (I never did well on T4) and sensibly self-medicate. I remember reading everything I could about the disease and using adrenal supplements to help me initially because I couldn't handle even small doses. Eventually, when I was well enough, I had the mental acuity to tackle the head of the surgery and he agreed to prescribe me T3 and has ever since.
Hi I am very sorry you are having a bad time. I am also in Scotland and never consulted my GP or an endo re thyroid-they are clueless. I do my own research via this group and by reading. I have high iron instead of low but o follow rules that help keep my levels low. So you do not drink tea or milk with meals. Also you can take alcohol with your meals and you can take vitC! These will all help bind iron! The very best of luck!
Thank you anne i will give this a try aswell, i dont really eat much dairy just a splash of lactose free in tea and i haven't had any alcohol for a bout 5 years at all 🙈 someone did say a small glass of sweet heart stout with meals but i'm not sure if thats an old wives tale or not as i didnt think there was much alcohol in it, i have been forceinf myself to eat liver and smoothying spinach, pistachios etc as they were all recommended to me to try and up it abit with diet, also drinking spatone iron water and supplementing with vit d and b12 but still feel really sick, relentless headaches and nausea ontop of the air hunger and palpitations feel like i could go into hibernation lol
Thanks again! X
One thing that stands out is the high testosterone - I THINK that that can contribute (along with the thyroid and low iron levels) to hair-loss; might be worth researching, although I do know that all of the sex hormones have to be in balance (i.e. oestrogen dominance occurs when it and progesterone are in incorrect ratios). Also your potassium levels are consistently low.
What I find shocking is that they ignore or handwave away results that show, even by their OWN measurements, which are not the best, that SOMETHING IS WRONG! (I say this as someone who, in determination to find help, has actually been labelled on record as a hyprochondriac [and more/worse].)
We are creatures whose bodies seek homeostasis, even one thing out of whack can have a cascade of effects - but it is hard to help youself when the "professionals" are so blinkered.
x
Their attitudes are disgusting arent they, it seems a huge amount of people seem to be getting the same kind of treatment from medical professionals which is shocking and sad, yeah i have actually been hospitalised twice for 2 days at a time unwell and they said the caus was low potassium....when i questioned why this kept on happening..what could be the caus i was ignored and told to eat a banana everyday...i started doing so and ended up back in a few months later same thing was told low potassium eat more bananas 🙈 what chance do people have to get better when you are treated like a hypochondriac for genuinely trying to get better, i think anyone would rather be able to do the things they wanted to and be well and able rather than constantly ill,
Thanks for replying, i hope you are well x
There are some very good doctors out there, but they're the incredibly brave and clever ones who've stuck their necks out to challenge establishment views.
I really like Dr Myhill's summary here... (someone who I actually trust from the medical profession - hurrah!) drmyhill.co.uk/wiki/Thyroid...
especially when she quotes another good doctor,"Dr Kenneth Blanchard states that reliance on a TSH to diagnose hypothyroidism is the biggest single medical error of modern times. It has resulted in millions of people missing out on this safe, life transforming, disease preventing treatment. "
Hi Gemstone88, so sorry that you've been treated like this and that you're feeling so unwell. I have been there. Your bloods suggest to me (I'm not medically trained but have many years of experience of thyroid disease) that you are anaemic - low ferritin and low mean cell volume suggesting iron deficiency anaemia and that you have sluggish thyroid - TSH above 1 and low free T4 at only 10. Your symptoms and blood results suggest you need treating with thyroid hormone but unfortunately doctors only rely on the 95 percentile blood reference ranges and don't use common sense anymore to treat patients so they will be scared to prescribe what is an obvious solution to your health problems. Also your B12 and folate are low. All these things will explain tiredness, hair loss low mood and air hunger. I think you would really benefit from iron infusions and B12 injections and also thyroxine or better still natural desiccated thyroid - NDT. Before supplementing with vitamins (NDT or thyroxine will need to be prescribed as it is a hormone treatment) try going back to gp with an advocate to argue your case. Or change GP. They sound pretty useless from what you've said and you will be just banging your head against a brick wall and getting more frustrated and sick. Your low ferritin needs treating and low mean cell volume is evidence of iron deficiency anaemia. If they won't help then if it was me I'd take iron supplements (e.g. solar gentle iron daily and double up dosage) and also daily high dose sub lingual B12 (5000mg) and folate supplements. Read up on B12 deficiency - join the PAS forum on healthunlocked and ask for advice and also seek out a more sympathetic doctor with experience of treating thyroid disease - thyroid UK can point you in right direction.
All the best and good luck x
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