Hello - i have not posted for a long time as i cannot get any one to recognise my symptoms and just feel i am wasting my time with doctors. Ten weeks ago i asked for a lot of blood tests to be done for thyroid in fact a full profile including T4 T3 and reverse T3 - vit D - vit B12 - creatinine - parathyroid - Vit K2 and lots more to which my doctor agreed to - but unfortunately my blood tests got lost at Kingston Hospital where i had them done (i told them that they were lying to me and then i asked for a urine test and a stool test and guess what four weeks ago they told me they were lost - they were taken at Kingston Hospital. For the last eighteen months i have been being tested for cancer of the lungs and then i was told i did not have it - i went to see the consultant two weeks ago and i asked him have i got cancer or not and if not then what is it with my lungs - he said he did not know if it was cancer or what it was - so i am still in limbo - i have only one kidney and one adrenal gland and i feel terrible - my bones hurt so much i get very cold and then sweat - i get terrible cramps in my whole body - the bottom of my tummy hurts so much - i can barely walk as my feet are so painful and the soles burn - i have bad fluid retention - a thyroid nodule - my nose keeps running and is bloody when i blow it - i alternate between hav IBS and very bad constipation - i have a job swallowing - gained five stone although i do not have much to eat - my vision is blurred so i cannot go out in bright sunlight - i get headaches and my eyebrows are non existent also my hair is really getting so thin that i have to wear a wig - my nails keep splitting and are ridges - but even though they hyave seen the private test from Genova and Blue Horizon they just poo poo them - Should i get more private tests done. Thank you all for reading this long post. Peace and good health to you all.
Blood tests - urine sample and stool sample. - Thyroid UK
Blood tests - urine sample and stool sample.
Xeena, if Kingston have lost the reports they should reorder and re-run the tests. Contact PALS at Kingston and see whether they can help you.
If you post the private tests you had done (include the lab ref ranges which are the figures in brackets after the results) members will interpret what they can and advise.
Thank you for that Clutter - i will ask for more bloods to be done - but i strongly think that they are hiding something as i tell the doctor i know my own body and how i am feeling - she cannot tell me how i feel - all she wants to do is put me on antidepressants and gets annoyed when i tell her no - i am also going to have more private tests done as i do not believe what they tell me - and i will also ask her for a copy of my results. Peace and health to you.
How frustrating and awful for you Xeena! My immediate response on reading your symptoms was that you have severe B12 deficiency - hair loss, breathing difficulties, blurred vision, headaches, burning soles of feet and difficulty swallowing are all neurological symptoms of B12 deficiency and should be treated without delay, as there is a short window of opportunity before symptoms are irreversible.
Autoimmune thyroid disease and PA/B12 deficiency is often interlinked and symptoms overlap but It seems probable from your digestive and internal problems that you may have difficulty absorbing B12, which is one of the most difficult vitamins to absorb, having to go through a complicated process in the ileum.
You could try writing to the surgery with the BCSH and UKNEQAS guidelines or changing your GP ? This site has information and advice on writing with useful templates and info, as well as an excellent film:
b12deficiency.info/b12-writ...
If it is not possible to change your GP, you could also write or email this latest BMJ research document, which also gives up to date guidance on treatment *** It might be worth taking someone with you, together with the summary (in case they do not read the complete document) to underline the seriousness of delaying treatment.
cmim.org/pdf2014/funcion.ph...
Cmim/BMJ document. " Summary:
* Vitamin B12 deficiency is a common but serious condition
* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.
* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."
* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.
* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.
Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.
It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given."
***"If there are neurological disturbances, then treatment should be expedited and started without delay - 1,000 u.g. i.m. on alternate days. This should be continued for up to three weeks or until there are no further improvements.
In irreversible cases, e.g. P.A., the treatment should be continued for life. "
I hope this helps you get the treatment you need.
Hello xeena,
Sorry to hear that you feel so unwell. If your Genova and Blue Horizon tests are recent, can you post them for members to comment.
It is difficult to make suggestions without blood test results.
Flower007
Much of your symptoms could be low cortisol, which would not allow your own thyroid hormones to work well, by building up a high reverse t3. I am sorry for your suffering.
Thank you all for your comments. I am sorry i have not been on here since posting - but my brother is very ill in hospital and is on open order and i also lost a very dear friend. I have my B12 and Vit D results - my B12 is 157 ng/L 160-900 which they class as low - my vitamin D is 30nmol/L 75-200 which they also class as low - cholesterol 5.7mmol/L which they class as high - Triglyceride is 1.8 mmol/ L which they also class as high. - these are the ones that worry me the most as i know what damage can be done if not treated. I got these results on Wednesday the 22nd of July and i was given a1MG injection of hydroxocobalmin and was told i had to have the injections three times a week - well that was over a week ago now and i have not yet been given any more of the Vit D injection. I have rung the surgery but could not make an appointment and had to make do with the doctor ringing me back - only to tell me that they are making changes to the surgery and i will have to wait for an appointment - but they did say that the nurse would come to me and give me the B12 injections - she turned up with another nurse - opened my refridgerator and asked where the B12 injections were - i told her i did not know - she was very rude and said i should have got them - where from i do not know - hence i am still waiting for them to let me know what is happening as i told them i needed to go and see my brother as time is of the essence - she shouted at me to get a cab to Kingston Hospital to see my brother - i told her that he is in fact in East Surrey hospital and that i have my own car - but i could not go as i was waiting for them to turn up - and still am..
Xeena, I'm sorry to hear your brother is so ill.
You need to continue the B12 injections every other day until symptoms resolve. You GP should also prescribe vitD capsules or tablets. Alternatively buy vitD online and supplement 10,000iu daily for 8 weeks and then reduce to 10,000iu alternate days. Retest vitD in 6 months.
Hi to all you lovely people - i have put some test results on here - but i put it at the bottom of the replies from a month ago - i do hope someone can help me - thank you and god bless you all.
Blood tests
Need Help with understanding blood test.
Blood Tests - Thyroid
T4 to T3 conversion – blood tests versus urine tests
