Please help me to decipher test results - going round in circles!

Hi All,

This is my first post, but having been reading lots of posts both here and on the pernicious anaemia group. I've had a lot of tests and I unsure how to proceed. Apologies in advance for the long post.

Some background...

I'm 38, female, BMI 31 and my health seems to be getting progressively worse. Up until September I was working in a senior/board level position, but was signed off by GP for 2 months with stress-induced depression. I was already on 20mg of citalopram, and have been since the birth of my son 7 years ago. This was increased to 40mg. After suffering from horrendous insomnia for 2 months on this dose despite trialling different times of day, I cut this down myself to 30mg. I have subsequently told my employer that I will not be returning to work as I don't feel able to and thankfully my husband is in a position to support us financially.

My mood has improved (relatively), but my other symptoms are getting a lot worse: extreme tiredness, lack of energy, breathlessness, weight gain (size 8 to 16 in 2 years), almost constant heartburn, restless leg, eye twitching, no periods for 6+ months, difficulty concentrating, very poor memory (for example, this morning I put on toast for breakfast then completely forgot about it), irritability, light and sound sensitivity. I think there are more, but I'm struggling to think straight right now.

My GPs diagnosis: Depression and PCOS (due to hirsutism). Sex hormones have been tested and menopause ruled out.

My initial suspicion was hypothyroidism, so I purchased test from Blue Horizon:

5/12/16 / 10.15am / Finger prick

Ferritin 30.1 ug/L (20 - 150)

TSH 2.71 mIU/L (0.27 - 4.5)

Free T4 13.91 pmol/L (12 - 22)

Free T3 4.85 pmol/L (3.1 - 6.8)

Anti-Thyroidperoxidase abs 16.9 kIU/L (< 34)

Anti-Thyroglobulin abs 10.3 kU/L (< 110)

Vitamin D (25 OH) 32 nmol/L (insufficient 25 - 50)

Vitamin B12 149 pmol/L (insufficient 140 - 250)

Serum Folate 4.4 nmol/L (8.83 - 60.8)

The sample I provide was insufficient to test CRP and Total T4, so I provided another sample a couple of days later:

CRP 15.7 mg/L (< 5)

Total T4 106.4 nmol/L (64.5 - 142)

My GP says thyroid is normal and is very dismissive of the B12/Folate/CRP values. He says he's "seen much worse" and that "B12 deficiency would not cause extreme tiredness". His only advice at this stage was to supplement vit D, although he did agree to do more blood tests.

5/12/16 / 11:48am / Venous sample

Bone profile - normal

Urea & Electrolytes - normal

Liver function - normal

I can provide specific values for the above if you think it would help?

TSH 2.07 mU/L (0.35 - 5.0)

Free T4 pmol/L (9.0 - 21.0)

Vit D (25 OH) 33 nmol/L (insufficient 25 - 50)

My GP 'forgot' to tick the boxes for B12, folate and Ferritin, so I had another sample taken on 14/12 at 17:31pm:

Serum B12 240 ng/l (200 - 900)

Serum Ferritin 25 ug/L (15 - 200)

Serum Folate 3.1 ug/L (3.1 - 20)

CRP 19 mg/L (0 - 10)

Prolactin 177 (<<630)

I also had a full blood count, with the only figure not in range being:

MCH 26.9 pg (27.0 - 32.0)

MCV was 86.8 fl (80.0 - 100.0). No blood film taken.

If you've made it this far, thank you! I would really appreciate your thoughts on how to proceed. I am not at all opposed to self-treating if necessary, but want to ensure that I'm doing the right thing. I'd really like to get well and have another child if at all possible. Sudden, severe pre-eclampsia and premature delivery at 31 weeks with my son has convinced me that I need to be in the best possible health before I even think of trying to conceive!

8 Replies

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  • Oh, I totally forgot, I had a follow up test with Blue Horizon to check Active B12:

    19/12/16 / 9.15am / Finger-prick

    Haemoglobin 141 (120 - 160) g/L

    Mean Cell Volume 85.0 (81 - 98) fl

    Vitamin B12 L 131 (Deficient <140) pmol/L

    B12-Active L 24.7 (25.1 - 165.0) pmol/L new range

    Serum Folate L 4.10 (8.83 - 60.8) nmol/L

  • 8Welcome to the forum, Sorisdale.

    Thyroid antibodies are negative for autoimmune thyroiditis (Hashimoto's) which causes 90% of hypothyroidism. TSH 2.71 indicates that your thyroid is beginning to struggle to produce thyroid hormones T4 and T3 although your thyroid hormones are currently within normal range. NHS won't usually diagnose hypothyroidism until TSH is over range or FT4 is below range. You could try supplementing 200mcg selenium and a thyroid supplement like NutriThyroid to see whether symptoms improve for a while.

    Vitamin D is insufficient. Most people are comfortable with it around 100. I would supplement 5,000iu D3 daily and retest in May.

    Ferritin is optimal halfway through range to 100. I would supplement iron which should be taken with 1,000mcg vitamin C* to aid absorption and minimise constipation.

    B12 and folate are low but I'll assume Pasoc forum has advised you about supplementing.

    CRP is an inflammation marker. Yours is high indicating inflammation somewhere in the body. It may be worth asking your GP to test thyroid peroxidase antibodies which may cause inflammation as I assume the complete blood count didn't flag anything up.

    Low MCH can indicate iron anaemia labtestsonline.org/understa...

    Women planning conception and newly pregnant should target TSH 0.4 - 2.5.

    *Edited to correct vitamin C not D.

    _____________________________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical advice from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Oh dear Sorisdale another sorry tale of GPs knowing next to nothing about nutrition. Your symptoms indicate possible nutritional deficiencies. Let's look at your results.

    Ferritin -

    30.1 ug/L (20 - 150) and 25 ug/L (15 - 200)

    Very low and I would have hoped your GP might realise this is bordering on deficient given the wide range and offer to do an iron panel. If you want to do an iron panel yourself then Medichecks do one for £39 medichecks.com/find-a-test/... . Personally I would do this before supplementing with iron tablets. Come back with the results of the iron panel for further suggestions.

    B12 149 pmol/L (insufficient 140 - 250) and 240 ng/l (200 - 900) plus

    Folate 4.4 nmol/L (8.83 - 60.8) and Folate 3.1 ug/L (3.1 - 20)

    These work together. B12 very low and folate under/bottom of range. Please seek advice from the Pernicious Anaemia Society forum healthunlocked.com/pasoc

    Vit D (25 OH) 33 nmol/L (insufficient 25 - 50) You can supplement this yourself with better supplements than your GP will give you. The recommended level is 100-150nmol/L. Get some D3 - my preference is for softgels as they usually only contain D3 and oil, I used Doctor's Best bodykind.com/product/2463-b... . Take 5000iu daily throughout the winter then retest in the spring. When you've reached the recommended level reduce to a maintenance dose of 5000iu alternate days. Retest once or twice a year.

    When taking D3 we also need it's important co-factors K2-MK7 and magnesium. D3 aids absorption of calcium from food and K2 directs the calcium to bones and teeth rather than arteries and soft tissues. Take D3 and K2 with the fattiest meal of the day.

    Magnesium comes in different forms, check here to see which would suit you best and take in the evening as it is calming naturalnews.com/046401_magn...

    CRP is high, I believe that signifies inflammation somewhere.

    As for your constant heartburn, that could be from low stomach acid which is very common with hypo patients. There's a simple test you could do - the baking soda test scdlifestyle.com/2012/03/3-... . Some people use Betaine HCl with Pepsin successfully, it didn't work for me but I get on well with organic apple cider vinegar with Mother.

    Your antibodies are very low so at the moment they're not showing autoimmune thyroid disease. However, one negative doesn't mean you don't have it as the antibodies can fluctuate, you need a couple more tests to be negative. One positive test would confirm Hashimoto's.

    Thyroid tests don't, unfortunately, reach the levels needed for a diagnosis of hypothyroidism here in the UK. Frequently doctors wait until TSH is 10, occasionally a GP will do something if TSH is over range and FT4 under range.

    For now, I would start supplementing with Vit D (and K2 and magnesium) but start them one at a time and leave a week or two between adding them to see if you get any adverse reaction. I would also do the iron panel test, if it only shows low ferritin and no other problems we can suggest supplements.

    And most importantly get over to the PA forum for advice on your B12/Folate.

  • Your GP should be absolutely ashamed of himself for saying "B12 deficiency would not cause extreme tiredness"

    How can he be so ignorant? Fatigue is one of the biggest symptoms of both hypothyroidism and B12 deficiency.

    I think you might want to consider changing your GP, because yours is faulty. ;)

  • It's vitamin C 1000mcg with Ferritin (not vitamin D)

    You might also consider gluten may be causing you absorption issues and low vitamin levels. More common with high antibodies, (Hashimoto's) but low stomach acid and leaky gut are likely if hypo.

    You could try adopting a gluten free diet (after Christmas) and see if you notice any improvements. It does need to be strictly gluten free to be effective and allow 2-3 months to see. Though some of us notice considerable improvement very quickly, others find any improvement is slower and more subtle.

  • Thank you all so much for your detailed replies, you don't know how grateful I am to be taken seriously (actually you probably do having been there yourselves). My GP has a knack for convincing me that it's all in my head and I always leave feeling totally dejected. I'll definitely order the iron panel and report back with the results.

    I should have said previously that I don't eat red meat, but right now I'd be willing to eat dust if I knew it would help! Will try a few months gluten free after Christmas to see if that helps.

    Thanks again!

  • GPs aren't trained in nutrition and exercise so some level of ignorance is expected.

    They are however taught the signs and symptoms of diseases like pernicious anaemia, rickets and iron deficiency aneamia but many of them still tell patients they are making things up even if the patient presents with textbook signs and symptoms.

    To protect yourself from further harm to your health ask friends, family and acquaintances in your area, especially those with various diseases, how their GP has treated them then change practices to a less ignorant one.

  • I am just echoing what the others have said, readings too low for thyroid and the ones that help the thyroid are too low as well! Plus a doctor who hasn't a clue.

    Have a look st the Thyroid UK site and lots of info including things you may not have come across before. Bestctime for blood tests and how to prepare for them. Things you mustn't do and things you should plus a list of thyroid symptoms. Don't worry you won't get all of them but there will be things on it that you may not associated with thyroid problems. It may well be useful to print it off and tick the problems you have as useful to take it along to your doctors appointment.

    Sadly he doesn't sound very knowledgeable or helpful either! Is there another doctor at the surgery you could try?

    If you decide to supplement then only add one thing at a time to make sure your body is happy with it before you add an other. Sometimes the fillers can be a problem.

    Sorry it sounds daunting but experience as shown us we need to be clued up and help ourselves as doctors are often at a lost. Always ask for a printout of your results, you are entitled to them though there may be a nominal charge to cover the ink and paper and if you get confused or anything you don't understand then shout out!

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