New and supposedly normal. I beg to differ

Hi I'm reaching out as I'm desperate. I was diagnosed suspected coeliac last year based on gastric symptoms similar to coeliac and anaemia. Despite a year of no gluten and feeling totally zapped mentally and physically I'm now having more blood tests to try and understand what's the hell is wrong with me. I have endometriosis and suffered with infertility. I had IVF to have my second child. I'm treated for anxiety and depression. I work full time and I'm struggling. I'm at my wits end now. So far I've had a few results back. Low iron still so to continue ferrous fumarate. Low Vit D so supplements to start Friday. B12 253 but I have no clue what that means. I don't yet have the print outs of all my results and thyroid tests not back yet. I'm so desperate for help as I'm paranoid thinking I look like I'm mad. All I know is I'm struggling to function. Any guidance gratefully received

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  • Whats the range for the B12? I suspect you are low. Google the symptoms and see if they apply. If you have coeliacs, they would normally give you B12 shots to start getting your levels up. Also get your folate checked too.

    What were your ferritin/Vit D levels and what dose have they supplied you?

    Do you have a thyroid issue? Do you have the results?

    Coeliacs can take over a year or even longer to start to feel better as your antibodies take time to go down and your stomach takes some time to heal.

    Have you double checked everything in your diet and eliminated all source of gluten including cross contamination? Have you replaced your toaster for example? One crumb of gluten each week can keep you ill.

    Although, it can take a while for symptoms to improve if have coeliacs, you should have felt some improvements :-)

  • Thanks for replying. I hope to get a clearer picture Friday as the only results I've had have been from the surgery receptionist. I'll get the print out then share if that's ok?

    I've been very strict with the gluten.

    Absolutely shattered, thinning hair, dreadfully heavy menses, ocular migraine, hips hurt. Depressed heart palpitations.

  • Welcome to our forum,

    Don't worry as you have joined a group who have/had symptoms similar to your own and I shall give you a list and I am sure you will find more that fits the bill :)

    It is a learning curve but slow and gradual is fine and you will read, learn and ask questions and you will know more than most doctors.

    thyroiduk.org.uk/tuk/about_...

    When you have a blood test for thyroid hormones, it has to be the earliest possible, fasting (you can drink water). If you were taking throid hormones you'd allow a gap of 24 hours between last dose and test and take afterwards.

    If your blood test was later ask if you an have a new one. Ask for TSH T4, T3, Free T4, Free T3 and thyroid antibodies. If he is reluctant say you've taken advice from the NHS Choices for information etc on dysfunctions of the thyroid gland and you've ticked all of the sympitoms you have. Show him list. I doubt doctors know any.

    When referring to blood tests and doctor says 'normal' that only means they are somewhere in the normal range. He doesn't refer to low or high.

    You need to supplement with Vitamin B12 methylcobalamin sublingual as you have to aim for a result above 500 and preferably aim for 1,000. I find Amazon has the best choice of sublingual (dissolve under tongue) as we usually have digestive problems so sublingual is best and methylcobalamin and not cyanocobalamin.

    You need to know Vit D, iron, ferritin and folate as we can be deficient which also cause symptoms.

    Always get a print-out of your results with the ranges for your own records and post if you have a query.

    If your doctor says he cannot do FT4 and FT3, say you have know to your Free T3 as it could be due to low T3 that you have been diagnosed as 'depressed'. If he refuses and if you can afford it we have recommended labs which do home pinprick tests.

  • This is so helpful thank you. I will be back with the results as soon as I can. The thyroid test is TSH and TFT but will double check if the above was covered. I had the bloods at 8:30am and at least 14 hours from eating. Do you think that's still off?

  • Firstly if you on anti depressants or anti anxiety Meds it's best you wean off them

    Low Ferritin

    Foliate

    B12

    Vit d3

    All go hand in hand with hypothyroid

    High cholesterol too

    It's vital you get hold of your results for

    Thyroid antibodies

    TSH

    FreeT4

    Free T3

    Just TSH alone will not be enough as you may have Central or Tertiary hypothyroid not Primary

  • Do you think the med schools mention Central or Tertiary hypothyroidism in their lectures? Doesn't seem like it !

  • I understand that in course of an entire medical degree only 7 minutes is dedicated to teching about the most vital gland in the body

  • They may well only remember 7 minutes but they do get more. Having worked in a medical school and a husband who did endocrine lectures in another they do get more or may be did would be more accurate as I retired many years ago. The university takes on the earlier training but lectures are more on how things work, feedback mechanisms etc but the teaching hospitals take over with the clinicians who bring them into contact with patients and so they come into contact with things not working correctly and I assume would learn what that means and how to treat it. My own GP was diagnosed about the same time as I was and was at a lost to understand it all so my husband literally gave him a refresher course of lectures probably given in the first 1-2 years of the course. Where I worked they were told the mechanisms in lectures and tutorials and at that time neither were compulsory. Things may well have changed but that's how it was in my experience.

  • Hi,

    B12 253

    If you want to know more about B12 deficiency, I'd suggest looking at the PAS (Pernicious Anaemia Society) forum on HU.

    I had many symptoms of B12 Deficiency with B12 levels 300 -400ng

    B12 websites

    pernicious-anaemia-society....

    b12deficiency.info/

  • Results so far:

    Serum Ferritin from 15ug/L in Dec 2015 now up to 85ug/L taking. Ferrous Fumarate (range 20-200)

    Serum TSH 1.46 mu/L (range 0.35-5.5)

    They haven't done the T4 T3 which I'm furious about

    Serum FSH 3iu/L (range 1-11 iu/L)

    Serum HDL 1.26

    Vit D3 47.7 nmol/L (range >50 nmol/L)

    Cholesterol/HDL ratio 4.5

    Plasma total Cholesterol 5.67

    Tissue Transglutaminase IgA lev 0.2 u/ml (range 0-1.9 u/ml)

    IgA 2.8 g/l (range 0.8-2.8g/L)

    Is anything here strong enough to validate a good reason to investigate further? I have so many symptoms on the list on the thyroid uk hypo page. It's not even funny 😣

  • My Blue Horizon kit has arrived after the GP informed me (in much the same way as I've read on here) that as my TSH is in range then no further testing on their part will be authorised. I have ordered the Thyroid Hormone and Cortisol test kit. As I'm already in the tail end of the working week I'll start Monday.

    My question is for those who had these private tests carried out, and let's say with clear results stating Thyroid hormone/antibody issues, how did your GP manage you from there on in? I've asked BH to report on my results and then I will take them to my GP who said he was interested to know the findings (said with tongue in cheek 😡)

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