Seeking your advice Re. test results

Hi All,

The helpful folk over at Thyroid UK recommend that I cross-post here. Would really appreciate your feedback on my test results.

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!

11 Replies

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  • I also 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

    Reply

  • Your GP is an idiot, mine was too. You will get good advice here I did.

  • Hi Sorisdale and welcome to the forum.

    Firstly, your GP is an ignoramus, but you already know that.

    CRP values like yours always merit further investigation. You have inflammation of some sort, somewhere.

    Folate and B12, including the active, plus the D, are really too low and could cause problems by themselves at the levels you report.

    Your thyroid function results are not good. Many people suffer severe problems with TSH above 1 and FT4 at the bottom of the range. Your FT3 could do with being higher, but with FT4 so low, you won't achieve this without treatment.

    Have you tested antibodies to intrinsic factor and gastric parietal cells?

  • 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"

    He's an eejit.

    Print out the PAS symptom checklist (it's in one of the pinned posts) and tick all those that apply. Then demand proper treatment - a course of injections to fix your obvious B12 deficiency.

    he's "seen much worse"

    And I suppose he's only allowed to treat people who are about to die from pernicious anaemia (ask him what 'pernicious' means).

    If you don't get any joy then join the PAS and ask them for advice.

    As an aside - a friend of mine had problems with citalopram. I suggested she should try escitalopram - and it was much better.

    Citalopram comes in two mirror image forms - (S) and (R). Only the (S) form is active and some researchers suspect that the (R) form might be responsible for some of the side-effects. So the company developed the single (S) form - escitalopram.

    Might be worth a try.

  • 7 yrs on Cytalapram,age 42 to 49, 6st gained. Now discovered I'm hypothyroid and have PA. Cytalapram made me not care about anything. It's hard to come off, however once your b12 and thyroid is sorted out you will feel better. Do all the vitamin tests and suppliment as necessary, weight has continued to be an issue at 62 I'm nearly 15 st. I was never overweight until I used this drug. Even after 5 babies. Never more than 11st at term and always 9st 3 the day after delivery. 2x38 weeks 1x 33 weeks 1x28 weeks 1 x37 weeks. Get well first and worry about the weight next. Good luck.

  • Thank you all so much for your advice, it's very nice to be listened to and taken seriously. I'm going to try and enjoy Christmas, reflect on everything I've learned and prepare for round 3 with my GP!

    I hope you all have a lovely Christmas x

  • He says he's "seen much worse" and that "B12 deficiency would not cause extreme tiredness".

    I'd like to say a rude word or two but restrained myself.

    I gave the following to my GPs

    1) Copy of PAS symptoms Checklist with all my symptoms ticked plus added others that weren't on list.

    pernicious-anaemia-society.... click on Symptoms checklist

    2) Copy of "BSH Cobalamin and Folate Guidelines"

    b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency"...should be on page 3 or put "cobalamin and folate guidelines" in search box.

    The "BSH Cobalamin and Folate guidelines" make it clear that people who are symptomatic for B12 deficiency should be treated even if B12 blood levels are normal range.

    Link to diagnosis/treatment flowchart in BSH Cobalamin guidelines.

    stichtingb12tekort.nl/weten...

    3) Copy of Martyn hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" this book is up to date with current UK B12 guidelines.

  • Other sources of b12 info

    1) Pinned posts on this forum. See summary of B12 documents compiled by fbirder in thid pinned post (last link in list)

    2) PAS website. There is an interesting blog by Martyn Hooper, chair of PAS on website.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    3) B12 Deficiency Info website

    b12deficiency.info/

    Link to another B12 deficiency symptoms list

    b12deficiency.info/signs-an...

    Link about what to do if you think you are B12 deficient

    b12deficiency.info/what-to-...

    4) BMJ B12 article

    I thought 5th summary point might be of interest.

    bmj.com/content/349/bmj.g5226

    5) b12d.org website

    b12d.org

    6) Book "Could it be b12" by Sally Pacholok and JJ. Stuart. Very comprehensive book about B12 with lots of case studies.

    7) When i first joined the site, I spent a lot of time reading other people's threads and learned a lot.

    Family Link

    Do you have any blood relatives who have PA or B12 deficiency or other auto-immune conditions?

    pernicious-anaemia-society....

    "and have been since the birth of my son 7 years ago"

    Did you have gas and air during labour? Gas and air contains nitrous oxide.

    gov.uk/drug-safety-update/n...

    Get educated about b12 deficiency and be prepared for a battle to get treatment if you are symptomatic ( nearly 20 years in my case).

  • Unhappy with treatment in UK?

    1) Link about writing to GPs. Does not seem to mention BSH Cobalamin guidelines which I do if writing about b12.

    b12deficiency.info/b12-writ...

    2) CAB advice

    citizensadvice.org.uk/healt...

    3) HDA pct A UK charity that offers free second opinions on diagnosis and treatment.

    hdapatientcaretrust.com/

  • Thank you so much for all the info Sleepybunny! I'm definitely going back better prepared after Christmas. I guess I didn't expect him to be quite so uninformed about B12. It always just seems that if you suffer from depression then they blame that for everything, at least that has been my experience.

  • "always just seems that if you suffer from depression then they blame that for everything"

    B12 deficiency can cause mental health issues including depression.

    b12deficiency.info/b12-and-...

    I kept being told that my physical and mental symptoms were caused by depression but I kept trying to explain that I was depressed because my physical symptoms stopped me from having the kind of life I wanted to lead.

    As well as being labelled with depression , some people on this forum have been told they have hypochondria or psychosomatic symptoms.

    Serum Folate 3.1 ug/L (3.1 - 20)

    Has GP mentioned your folate being on the borderline?

    The article below mentions in Management section that if a person has both folate deficiency and B12 deficiency treating just the folate deficiency may lead to neurological problems.

    patient.info/doctor/folate-...

    patient.info/doctor/macrocy...

    labtestsonline.org.uk/under...

    Serum Ferritin 25 ug/L (15 - 200)

    MCH 26.9 pg (27.0 - 32.0)

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

    Although your ferritin is within range, it's not that far above lower end of the range. Low levels of iron can lead to small red blood cells (microcytosis). Low levels of B12 and/or folate can lead to macrocytosis (enlarged red blood cells). the effects of low b12 and/or low folate on red blood cells can be masked by effects of low iron.

    If a person has both microcytosis and macrocytosis , a blood smear may show up both conditions.

    labtestsonline.org.uk/under...

    labtestsonline.org.uk/under...

    I am not a medic just a person who has struggled to get a diagnosis.

    If you have another appt it may be helpful to take someone with you who is kind. supportive, well-informed about b12 deficiency and willing to speak up on your behalf. My experience is that doctors are sometimes kinder if another person is present.

    PAS

    Some people on this forum join the PAS. The PAS are helpful, sympathetic and a good source of info. They can sometimes intervene on behalf of members but I think it's easier for them to do this if a person has a definite diagnosis of PA (pernicious anaemia).

    pernicious-anaemia-society....

    IFA test

    Have you ever had an intrinsic Factor antibody test? this can help to diagnose PA.

    Some GPs I have had contact with are not aware that it's possible to have PA even if IFA test comes back negative. This is called Antibody Negative PA and is mentioned in the BSH Cobalamin and Folate Guidelines (on the flowchart).

    It's possible to have an IFA test done privately in UK . The BSH flowchart I mentioned in a post above says when UK doctors should order an IFA test....basically my understanding(i'm not a medic) is when anyone is symptomatic for b12 deficiency.

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