i hope everyone is well, this is a vent post out of desperation and frustration so i apologise in advance i just have to get it off my chest.....so...i have hashimotos and severe hypo/hyper symptoms...to the point it has completely crippled my life, i am currently sitting in bed away from my husband and kids on the verge of a complete breakdown unable to even mustre the breath together to get dressed, it took me 6 years of gradually getting worse to get a docter to even do basic tests...6 years of ridicule and belittling...changed docters 4 times...put in complaints...landed in the hospital on numerous occasions..had horrible experiences with rude endos...i am now diagnosed...celiacs....have hashimotos....low b12.....vit d and ferritin is non existant and feel the worst i have ever felt in my life, i can barely catch a breath the air hunger is so bad...migraines....numbness and tingling....palpitations....nausea....insomnia then extreme fatigue....vertigo...i could go on and on and on...my drs answer was to put me on 800fultium d3 which is no where near enought to address a deficiency as low and a short course of iron....it has made no difference what so ever...i have now bought my own supplements but am in such a bad place mentally i can't describe....i am almost 30 years old and this has robbed me of having more children...cost me my job my social life and stole myself from myself! I have enquired about seeing a specialist in my area private but i cant find anyone is scotland i have begged gps...endos and got no further forward...my results are always a mess...this isn't right, people should not be left like this...now sitting with horrible breathlessness....have had no period for god knows how long...they are all over the place....arms like dead weights...vertigo and horrible jittery shakes...i will go back to my gp on monday...for the millionth time...but i had to get it off my chest, i would not wish this on my worst enemy, thanks for reading...sorry for ranting...health and wealth to y'all
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Gemstone88
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Several of your symptoms sound very like how I felt when I had a gastro-intestinal bleed for five years caused by a giant polyp. Have you ever seen dark or black blood in your poo? Or something that looks like coffee grounds?
Have you ever had a faecal occult blood test (FOBT)? If you haven't you should ask your doctor to do one. Unfortunately it isn't a very reliable test - it is very easy to get a false negative or a false positive caused by supplements or food choices, so careful planning is needed to try and avoid this - but doctors won't tell you about this.
In my own case I was told my FOBT was negative even though I could actually see the blood and there was lots of it. I did my own research on the problem and discovered that my vitamin C supplements were the likely cause of the false negative.
I wrote about FOBT tests recently and what to do to improve the reliability.
What kind of iron supplement are you taking and at what dose?
What dose of vitamin D are you taking?
What kind of B12 are you taking and at what dose?
Are you taking folate supplements?
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I can totally sympathise with how you feel about doctors. They have been ridiculing and belittling me for over 40 years, so I know what it is like. When I had the GI bleed I could only get upstairs by crawling on hands and knees or going up on my bum very, very slowly and I felt like I was being suffocated all the time. Arms were like lead weights and I couldn't lift them to shoulder height for more than a second.
If you can afford them there are things that you could try privately e.g. a capsule endoscopy, a private iron infusion, ferritin and haem/heme supplements in preference to, or in addition to, ordinary iron supplements. I haven't done any of these things myself. I either didn't know about them or couldn't afford them at the time I was very ill.
Hi humanbean thank you for replying, i haven't noticed any dark blood or things like that but i do know i probably don't go anywhere near as much as i should but had always put that down to hashis or coeliac symptoms, i will definately bring this up with my gp though and ask about testing further, my gp had me on 800vitd3 but i have since bought a spray version which is 3000per spray, was not prescribed any b12 supplements so also bought a spray, go had me on ferrous fumurate 210mg which i was told was due to my ferritin being so low...result of 8 i am sure and vit d was 14, i can't seem to get anywhere with them in regards to the thyroid or hashis symptoms but i think even addressing the blood work properly would make a difference, my potassium is always low aswell which i cant ever get a reason for from them, they said at my last app they think i have some kind of absorbtion issue as i have been on supplements in the past and nothing seems to bring my levels up,
Low potassium may be a result of low magnesium. Since there isn't a reliable test for magnesium levels it is best just to supplement magnesium anyway because most people are low in it. There are lots of different kinds of magnesium supplement. Choose one that can be absorbed well from these lists :
You should take about 300mg - 350mg magnesium per day.
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I took ferrous fumarate 210mg to raise my levels of iron and ferritin. I had to take 1 tablet, 3 times a day, with 500mg - 1000mg vitamin C per tablet of iron. It took me nearly 2 years to get my levels to mid-range. It isn't a good idea to go much higher than this because excess iron is poisonous.
Helvella has written a document about different kinds of iron that can be supplemented :
You can take ferritin supplements and haem/heme supplements along with supplements like ferrous fumarate. They don't interfere with each other. Unfortunately, ferritin and haem or heme are expensive supplements. But since your levels are very low it might help to speed up your improvement in health.
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If you have low vitamin D then 800 iU per day is not going to help. If your levels are deficient then you would need 5000 iU -10,000 iu per day depending on your level. Such doses are easily sourced on Amazon or other supplement sites.
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For B12 and folate you should talk to the Pernicious Anaemia forum on HU :
Anyone taking vitamin D will increase their absorption of calcium from the diet. To persuade that calcium to go into bones and teeth where it will do some good you need magnesium supplements (described above) and vitamin K2, which is also available without prescription.
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Anyone supplementing iron or vitamin D should be aware that they can be toxic if/when levels get too high. Regular testing is essential.
Thank you humanbean that is great info probably more than i have had from any medical professional i have seen in over 6 years! I will definately look into the suggested supplements and hopefully get futrther forward!
If you can post your most recent thyroid results and ranges and post any results and ranges for ferritin, vitamin D, B12 and folate we can see whether your levels are optimal or we can suggest which doses may be helpful.
TSH 2.2 is low-normal but I would expect to see it higher as FT4 is low. Are you taking Levothyroxine?
Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.
Potassium is deficient. Ask your GP about supplements.
Ferritin 8 is deficient. Your GP should do an iron panel and full blood count to see whether you have iron anaemia. If you have iron anaemia you will need more than 210mg Ferrous Fumarate.
Folate is deficient. B12 will not work without adequate folate. Your GP should prescribe 5mg folic acid for 2-3 months.
B12 319 is within range so NHS won't prescribe supplements but I see you are already supplementing with a spray.
VitD 14 is deficient. You need loading doses to correct deficiency. I was prescribed 40,000iu ProD3 daily x 14 days followed by 2,000iu daily x 8 weeks and my vitD rose from <10 to 107.
No not on any thyroid meds at present they are extremely reluctant to even trial me on a small dose of anything, infact they are pretty much insistant that my thyroid levels or the hashis should be giving me no issues at all, they have never mentioned the potassium to me i picked up on that myself after over hearing one of the docter on one of my hospital visits, i have been gluten free for about 3 years and it has eased the tummy pain i was getting, when i have asked about the iron before i have been told i am not anemic but my stores are low...then that i was anemic and needed to raise my levels but i dont seem to get any further with it, i know i should be on a much higher dose of vit d but they are point blank refusing to give me anything more that 800 as it is their guideline apparently, i did buy a spray as i wasnt sure if the gel caps were being absorbed as they havent raised my levels at a higher dose in the past, thank you so much for all of the info i know i am not mad regardless of what they would have me feeling x
Ask your GP to consider central hypothyroidism instead of primary hypothyroidism. These present with low-normal TSH and low FT4. Perhaps you could print off the information below from NICE CKS:
Secondary or central hypothyroidism is the result of insufficient production of bioactive TSH due to a pituitary or hypothalamic disorder.
Urgent referral to an endocrinologist should be arranged if:
I had euthyroid Hashis and felt like I was dying. It wasn't helpful to be told that symptoms were non-thyroidal because Hashis was asymptomatic unless the patient was hypothyroid. I subsequently found there is research to show otherwise.
Your GP should read the vitD guidelines properly. You can buy 5,000iu and 10,000iu softgel capsules on Amazon. I would recommend you supplement at least 10,000iu for 6 weeks and then reduce to 5,000iu daily for a few months unless you follow the prescribing plan my GP used.
Thanks again Clutter i will print this off and take it with me on monday and hoepfully get further forward, i have asked numerous times about addressing the deficiencies as my husband and i would have loved to have another baby but unfortunately i get the same response everytime from the docters, my body feels far too ill for anything like that now and i don't even cycle normally anymore so unfortunately i cant see it ever happening now, i will definately look at the supplements and buy them in myself, i will literally do anything i can to feel better, i cant remember the last time i felt semi human...or well, thanks again x
T4 that low and they don't want to give you MEDS . If it were me I would tell the doctor ' either you give it me or i get my own , and if it goes wrong, your responsible - would you like that in writing , doctor '.
With your symptoms plus low D3 I would advise a calcium and if possible a parathyroid test to rule out hyperparathyroidism. It's a long shot but worth checking.
Thanks bantam12 i will definately bring this up on monday, i have mentioned it before but it fell on deaf ears unfortunately, hopefully this time someone will listen x
Ok they weren't posted when I replied. Normally calcium would be high but it is possible to have hyperparathyroidism with a low/normal calcium, the surgeon who did my pth op is trying to raise awareness of this.
I would still recommend a parathyroid blood test to rule out either a hypo or hyper parathyroid problem.
So sorry to hear you feeling like this😢. Are you taking selenium ? Apparently this helps us to convert t4 to t3, along with everyone else's suggestions. I think you need to take a much stronger dose of vit d. There is a Facebook group for vit d deficient folk.
Hi Bijourain i'm not currently supplementing with selenium but will look into it, yes i definately do need to be on a much higher dose, i have been on higher in the past but after a year was lowered and it hadn't made a huge difference, i think i may be on the vit d group on facebook,it is a great group x
So sorry to Hear about your problems. Shooting is too good for the médics you are dealing with! Al your vitamins etc are way too low, typical problems for many of us. Hopefully with high dose vit d plus vit k and high dose b12 plus b complex and improved iron things will improve but it will take time.best wishes
I absolutely agree crimple some of the attitudes from medical professionals i have experienced have been beyond disgusting, i think alot of them are in the wrong career, not very caring or understanding at all! I really hope i can start to turn things around even if i am doing it on my own x
I found the only way to improve was with a lot of help from here, prívate blood tests, reading and going. gluten free to reduce my anti bodies. Things aré a lot better but Now looking at adding T3 to my T4 prescription.
Hi Gemstone, You have every right to be extremely angry with this treatment. I would not wait one more minute expecting anything from the medical professionals. I see you have received lots of advice so I won't add anything but don't hesitate to self medicate if you have no other options. I've been at this "health thing" for about twenty years reading and learning from the blessed internet and slowly watched the corruption in the profession. I'm in the U.S. by the way which probably spends more per capita but has much lower rates in the statistics. Of course other industries are complicit in ruining our health with toxic food and drugs.
Were you hyperthyroid at one time?
Izabella is wonderful with advice but you could check this website and see if it relates to you. thepaleomom.com/start-here/...
I especially like John Bergman on You Tube which Petals2 recommended. He seems to knows every aspect of human function and he thinks we are seeing the last generation. He said birth rates are way down and there will be more autistic children than normal within ten years. He has clear reasoning for his opinions in that research rarely studies the combinations of drugs which may turn deadly than if single application. This was in talking about vaccinations. These may sound radical but it would still move me to do whatever is possible to protect my health and my children's health. Clearly this is a global crisis.
Hi Gemstone, sorry to hear you still feel so bad, many of us do know how you feel as have been there too so you're not alone.
If you were diagnosed coeliacs, you really should have been given B12 injections/iron infusions etc - supplements that bypass the stomach basically as it can take a good few years for your stomach to heal after going GF and be able to absorb again. Sublingual might help if not.
Have you had your annual reviews for your coeliacs and had your coeliac antibodies retested each time to check if they have reduced enough and that you are sticking to a gluten free diet? Have you had a dexa scan?
Just in case, are you aware that even cross contamination - tiny crumbs of gluten - will continue to effect you such as using your old toaster, shared butter in the fridge. If not, head over to CoeliacUK for CC advice. You may also want to call them for advice on your treatment for coeliacs, as seems far from ideal.
I agree with clutter that parathyroids unlikely to be issue with low calcium - good reason for a dexa scan too.
Might be useful to rule out pernicious anaemia (folate/B12) as often associated with coeliacs.
In regards to thyroid, I think you could do with a dose increase. You might also want to check your T3 levels to check you are converting properly. Inflammation can causes this issues which is what coeliacs would have been causing. Are you able to pay for some of these tests yourself?
I do hope you get to the bottom of it soon but just do what you can with each of these issues and get your levels up and hopefully you will see some improvements soon
Hi Saggyuk no i have never had any reviews or follow ups since being made aware of coeliacs there are 3 others in the immediate family that also have it but they do not have the other health issues i have, i did have other tests done x rays...scans and an endoscopy whilst under a gastro consultant but they haven't seen me for over 2 years now, i do try to be as careful with my diet as possible, i have requested my t3 be tested i am not sure if it was included in the tests i am waiting on the results for but i would like to think that it is after asking for it, i am not currently on any thyroid meds as my docters dont seem to want to aknowledge the fact that that or the hashis could be causing even the slightest of symptoms which is frustrating,
I am hopeful that if i can even start to address the deficiencies myself that i can start to feel a bit better, just having a very low moment at present it is the worst i have felt and it has really driven home that the last 7 years have been pretty much wasted and the things i had hoped to achieve may never happen now, it is great to be able to come on here and get so much advise and know that you are not completely alone in this, but it is also quite sad that we have to, the docter really are beyond a joke, thanks again x
You must must get your coeliac antibodies checked every year - with the amount of symptoms you have, this is the only way you'd be able to tell if you have been totally successful in removing gluten completely from your diet or whether this is partially involved or not. There are other issues to consider too like refractory coeliac although I would assume most of your issues are to do with deficiencies and coeliac issues being left unresolved. The annual coeliac reviews are even mentioned on the nhs website so your GP really should be undertaking these - please call coeliacuk for further advice - Helpline 0333 332 2033
In regards to hashis - have you had your thyroid antibodies tested?
I know, I was left sick for decades and also feel most of that time was wasted and only just feeling better now. It's horrible and yes, most doctors are crap but the more you learn for yourself, the better the chances are of improving your situation. On the plus side, now that I have done that, at least I'm not in the same situation which I would have been if I listened to the doctors so am feeling more positive and will make the most of the time I have left, even if it means changing my goals
Thanks Saggyuk i will definately request that they test my coeliac antibodies again whne i am in the gp on monday it may partly be my fault as i have changed gps a few times since i was diagnosed originally although i am still at the same practice, yes my thyroid antibodies were 444 last month i am waiting for this months results to come back i was only recently diagnosed with hashimotos after asking to be tested for all different thyroid tests for 6 years! I guess a big part pf me is kind of bitter and blameing the docter for me being this ill and the other part of me is just really sad it is hard and isolating at times thats why this has been a life saver for myself, i would never have gotten half of the info i have from here from my gp x
Well it's on your notes so they should have been doing them regardless so don't blame yourself and should have been the first thing they ruled out if having continuing issues tbh. I don't blame the doctors for me being ill, I do blame them for not listening and making me feel like it was in my head all those years lol
Okay, so you're definitely going that way with your thyroid, it may just take them a while to prescribe meds. T3 test would be useful to ensure conversion but unlikely GP can get them done - only my endo is able to request these. The labs just ignore my GP and refuse. You can pay for this yourself if you wanted to. I think you should really be under an endo and not a GP to resolve this one as clutter mentions central hypo etc might be a little more complicated?
Just rule out the obvious first and take things one at a time, make sure your coeliacs is actually under control and you don't still have antibodies. Then try and get your vits up to a better level and if not, then think about why this might be.
You may want to think about other food intolerance too. Many coeliacs have issues with other food such as dairy and oats. I myself have additional issues with barley even if low amount and certified gluten free and causes same reaction. An elimination diet for six weeks or longer may help to work this out or at least rule it out.
Try and work on all other health/dietary issues too in the meantime and make sure optimal - balanced diet, not too much sugar, drinking enough water etc etc. If you simply swapped gluten products to Gluten free versions without any other alterations to your diet, you will likely be consuming much less iron, folate etc and more sugar as gluten flour and products are heavily fortified (have these vits added) whereas GF substitutes generally do not.
It's hard when you feel so bad and have so many problems that it's difficult to work out which symptoms are part of what but the more you learn and resolve, the easier it becomes to link symptoms you have to which issue which makes managing them much easier in the long run
Gemstome88 - I was in a similar situation when I was finally diagnosed. Tried all ways to get medics to take note and ended up banging my head against a brick wall. Worst part was the brain fog when trying to get my side across, I even put it all in writing and when I went for my appointment it was all ignored.
I have PA, Hashi and hypo. Suspect a view other things but just deal with these.
I took lots of advice from this forum, took charge of my own body and started supplementing as they advised. It has taken well over a year if not more for me to get to where I am today. I would write everything down before you go into the surgery and work on that list. It may not get you anywhere but don't throw the towel in just yet, maybe when they see you have solid evidence they may smarten their act up.
Regardless of the outcome sort you supplements out and get them up to a decent level as it will make you feel more able to deal with all the rest.
It can seem such a deep dark hole you will never come out of it but you will, many on here have been to hell and back and are still in there helping others, check their bios. out.
Hi busterboy thank you for your reply,yes a deep dark hole is how i currently feel, i am normally pretty tough i would hope, i am just having a wobbly i think, more frustration than anything else, hopefully i can take all of this information and make a start and things will turn a corner, i am very thankful for the time everyone has taken to respond today,i really needed it and it has definately gave me the little push i was needing x
I know you have loads of messages but please come back after you been to the GP and start a new thread. Put anything you like in the post as you aren't the only one who GPs refuse to listen to.
Hi Gemstone, don't you dare blame yourself! They have been neglectful at the very least! Clutter gave you a link to NICE- it tells you what they are supposed to do,you can use it to insist they offer you better care or put in a complaint! I know how bad you feel about wasting your life and I really hope you can turn it around and get through this,I wish you all the best, the help offered on here is amazing!
Hi. I am sorry I can not give any advice but I know you will get many replies from those with lots of experience. I just wanted to say I really hope you find an answer and I wish you wellness. Xx
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