Saw endo, still no help :( feel worse than ever!

Update, sorry long post but getting desperate and feeling worse. As far as I've got so far is finding out that I have Hashis, not diagnosed of anything.

I saw endo couple months ago. He was very unsympathetic and really could care less. Agreed at least that my symptoms were significant. I was asking if I could get trial of thyroid meds but he just kept going on about the cardiac risks and there is no biochemical indication to start thyroid meds and we would lose the pituitary-thyroid feedback control if meds started.

Endos letter afterwards said that folate is slightly low but given normal indices he does not think that this needs supplementing. And that there is nothing more he can suggest and discharged me back to gp

First of all my symptoms, fatigue, headaches, dry skin, hungry after eating, graving sweet and salty foods, diarrhoea (every day), nausea, cold feet, low body temp, hypoglycaemia (I don't have diabetes), confusion, trouble thinking, dizziness, depression (was given sertraline) and few others.

New symptoms - trembling, muscle weakness (legs actually collapsed when tried to lift something), confusion and memory getting worse (actually asked hubby same question three times in a row inside 5mins!!!) fatigue getting worse. Diarrhoea getting worse, actually sorry not pleasant but faecally have had few accidents. Not able to work anymore

I'm seeing GP this week, is the any other tests that I should ask or anything else that could help me. She has refused to do vit D.

Not started gluten free yet but on my way to that.

Would be very grateful for any help that anyone can offer.

Here are the previous results

Bloods taken in April 2016:

Erythrocyte sedimentation rate 16mm/h (1.0-10.0)

TSH 5.44mu/L (0.27-4.2)

T4 14.0pmol/L (11.0-20.0)

Full blood count, all withing range

Liver & kidney function all fine

Bloods in beginning of July 2016:

TSH 3.47mu/L (0.27-4.2)

T4 14.6 pmol/L (11.0-20.0)

ANTI-TPO 442iu/mL (<34)

Negative for coeliac disease

Tests ordered by endo Jan 2017

Cortisol 25 nmlo/L (172 - 497 nmlo/L)

HGB 139 (115 - 165g/L)

WBC 11.1 (10*9/L 4.0 - 11.0)

PLT 393 (10*9/L 150 - 450)

RBC 4.73 (X10*12 3.50 - 5.80)

HTC 0.426 (L/L 0.370 - 0.470)

MCV 90.0 (fl 76.0 - 98.0)

MCH 29.4 (pg 27.0 - 32.0)

MCHC 327 (g/L 310 - 360)

MEAN PV 9.0 (fl 7.0 - 12.0)

NEUT# 7.90 (10*9/L 2.00 - 7.00)

LYM# 2.50 (10*9/L 1.00 - 3.00)

MONO 0.60 (10*9/L 0.20 - 1.00)

EOS 0.00 (10*9/L 0.00 - 0.50)

BASO 0.00 (10*9/L 0.00 - 0.20)

THS 1.91 (mU/L 0.27 - 4.20)

FREE T4 12.4 (pmol/L 11.0 - 22.0)

SODIUM 138 mmol/L (133-148)

POTASSIUM 4.7 mmol/L (3.6-5.3)

UREA 2.9 mmol/L (2.5-7.8)

CREATININE 47 umol/L (44-80)

EGFR >60 ml/min (>60)

B12 193 pg/ml (191-663)

Serum FOLATE 3.0 ng/ml (>3.9)

SERUM FERRITIN LEVEL 15.4 ng/ml (13.0-150.0)

9 Replies

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  • Forgot sleeping problems from the list :)

  • Nindri

    B12 193 pg/ml (191-663)

    Serum FOLATE 3.0 ng/ml (>3.9)

    SERUM FERRITIN LEVEL 15.4 ng/ml (13.0-150.0)

    These results are part of your problems. And if your doctor is ignoring them he really shouldn't be doing that job.

    **

    B12 is very bottom of range which, accompanied by an under range folate level, is a problem. What does he think reference ranges are for? If you're under range, even by a tiny amount, it signifies a problem. Read what NHS Choices has to say

    nhs.uk/conditions/Anaemia-v...

    Please take these results over to the Pernicious Anaemia Society forum here on Health Unlocked for further advice, then discuss their advice with your doctor. You will probably need testing for Pernicious Anaemia, may need B12 injections, and will probably need folic acid supplements.

    healthunlocked.com/pasoc

    **

    Ferritin needs to be at least 70 for thyroid hormone to work properly, our own or replacement, and for females 100-130 is recommended. Yours is so low an iron infusion would be a very good idea.

    **

    Dr Antony Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse magazine that where antibodies are present then Levothyroxine should be started to 'nip things in the bud'. You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org.uk to discuss with your doctor.

    **

    Adopting a strict gluten free diet should be a priority, and supplementing with selenium L-selenomethionine 200mcg daily will help reduce antibodies, as will keeping TSH suppressed.

  • PS - Vit D can be tested privately for £28 with a fingerprick blood spot test from City Assays vitamindtest.org.uk/index.html

    We shouldn't have to do it privately but it is a very important test and if your doctor won't do it then we have to help ourselves.

  • Thank you so much your reply SeasideSusie, that is very helpful.

    I will post these to the PA forum as well.

    Since the post I went to the doctors and requested some of older results and my B12 was 158 pg/mL (148-900) at 2014 when it was last measured and folate 6.2 ng/mL (3.0-16.0) so looks like that has been on the low end for while.

    And thank you for the link, I think I will do that.

  • Cortisol 25 nmlo/L (172 - 497 nmlo/L)

    I'm no expert on low cortisol, but unless that was a typo, you should be tested urgently for Addison's Disease or any other conditions which result in a severe deficiency of cortisol. If you were to have an Addisonian crisis/adrenal crisis it would be a medical life-threatening emergency.

    en.wikipedia.org/wiki/Addis...

    en.wikipedia.org/wiki/Adren...

    I've seen some dreadful endocrinologists discussed on this forum but I think yours must take the prize.

    Apart from the possible Addision's Disease/cortisol deficiency, he/she has ignored

    1) the history which includes over-the-range TSH and low in range Free T4,

    2) high inflammation (the high ESR value),

    3) the high TPO antibodies showing that you have autoimmune thyroid disease (aka Hashimoto's Thyroiditis),

    4) the low B12

    5) the low folate

    6) the low ferritin.

    The things I've mentioned in 1 - 6 are usually ignored by endos, but the risk of Addison's Disease is not.

  • Thank you for your reply, not a typo but cortisol was after dexamethasone suppression test to rule out cushings.

  • Thank you so much your reply SeasideSusie, that is very helpful.

    I will post these to the PA forum as well.

    Since the post I went to the doctors and requested some of older results and my B12 was 158 pg/mL (148-900) at 2014 when it was last measured and folate 6.2 ng/mL (3.0-16.0) so looks like that has been on the low end for while.

    And thank you for the link, I think I will do that.

  • Have you checked whether the cortisol level you typed in is a typo? It is very, very important.

    If you want people to know they have been replied to you must use the Reply button immediately under the post you are replying to to make your reply.

    If you don't then (for example) SeasideSusie won't know you've replied to her.

  • Hi nindri. Did you actually get any further in getting a diagnosis of hashisimotos? My symptoms were exactly the same and I had private bloods done and the dr put on my results this lady has Hashimotos and is severely hypothyroid. GP put me on thyroxine straight away.

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