36 yr old coeliac -hypothyroid? Help please/advice needed

This was my initial post a couple of months ago...Hello, I'm a 36yr coeliac female struggling with fatigue, low b12, low iron, poor cognitive function & myalgia. Pretty much at my wits end with exhaustion/stress/anxiety from it all. Waiting to see endocrinologist on NHS but looking for recommendations to go private (West Yorkshire area). My dietician said it looked like I have a thyroid problem. My gp said I don't. Something isn't right! I can't go on like this. I've even started forgetting people's names. I take b12, Adcal d3 & iron tablets.

Then this...

Bloods - In May my b12 was 183. Prior to that (Nov 2014) it was 263 and regarded as 'normal, no action'.

When my dietician was concerned, TSH was 5.0 in October 2014, but then 3.4 when gp tested a month later. Subsequent tests came back 'normal' according to my gp....

Further to my previous post, I went to see a private endo who said I didn't have a thyroid problem at all (just based on previous results also listed in this thread) and he requested tests for glucose (x3) and adrenals/cortisol as well as acetylcholine receptor antibodies. I was told all of these came back 'normal'. Was due to go back to see private endo but he has retired before I could get a follow up in!

My NHS endo appointment has come round now (first week in Oct) so I thought I would go armed with as much info to help my case as possible. I sent off for Blue Horizon thyroid blood tests myself (in case the NHS endo doesn't test me for anything related too) and these were the results... (I took the sample at approx 7.50am prior to eating anything)...

CRP: 0.30 range <5.0

Ferritin: 130.9 range 20-150 (I have been taking iron supplements from my gp but was since told to stop without them taking any further level tests)

TSH: H 6.19 (0.27 - 4.20)

T4 Total: 75.8 (64.5 - 142.0)

Free T4 16.40 (12-22)

Free T3 4.46 (3.1-6.8)

Anti Thyroidperoxidase abs <5.0 (<34)

Anti Thyroglobulin Abs <10 (<115)

Vitamin B12 L 149 (Deficient <140)

Serum Folate 22.48 (10.4 - 42.4)

So from these results, my B12 has fallen further. I have practically begged my GP for B12 injections and depending what happens with the NHS endo, I will be going back armed with a letter for my GP (from me, strongly requesting a B12 injections trial).

I don't know if my NHS endo will accept these results, but I am at least hoping they will trigger further investigation? My cognitive state is very difficult to deal with and I haven't had a proper conversation with anyone for ages (I keep drifting off and can't concentrate on what anyone says if they speak for longer than a sentence)! It is also affecting my work badly which is something I have told my GP.

Can anyone offer any advice please?

Thanks for your help.

I have since stopped taking cyanocobalamin tablets as it was a very small dose and my gp told me to stop taking ferrous fumerate a few weeks ago.

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7 Replies

  • This is my previous set of results from gp in April...

    Tissu transglutamine IgA lev - (MR47) - 0.7 (<15.00U/mL)

    Intrins factor ab screen test (MR47) - 01 Normal, no action

    Serum ferritin - MR47) 01 Normal - No action 50 ug/L (10.00 - 322.00ug/L)

    Serum folate (JAM) 01 Normal - no action 6.8 ug/L (5.40 - 24.00ug/L)

    Serum vitamin B12 (JAM) 04 - 183 ng/L (211-911.00ng/L)

    Serum albumin (JAM) 01 Normal 38 g/L (33.00-48.00g/L)

    Serum alkaline phosphatase (JAM) 42 iu/L (30.00-130.00iu/L)

    Liver function test - normal no action

    Serum total bilrubin level 14 umol/L (2.00-21.00umol/L)

    Serum Alt level 15 iu/L (<40.00iu/L)

    O/E - tympanic temperature 37.3 degrees C

    HbA1c levl - OFCC standardised - normal - no action 31mmol/mol (20.00-41.00)

    Serum C protein level <5.0 mg/L (<10mg/L)

    Serum inorganic phosphate 1mmol/L (0.8-1.50mmol/L)

    Calcium-adj, albumin:

    Serum adjusted calcium conc 2.29mmol/L (2.20-2.60mmol/L)

    Serum albumin 38g/L (33.00-48.00g/L

    Serum electrolytes:

    Serum sodium 142mmol/L (133.00-146.00mmol/L)

    Serum potassium 4.1mmol/L (3.50-5.30mmol/L)

    Serum creatinine 69umol/L (49.00-90.00umol/L)

    Serum urea level 4.5mmol/L (2.50-7.80mmol/L)

    GFR calculated MDRD 84 mL/min/1.73m2

    Thyroid function test

    Serum TSH level 2.6 miu/L (0.20-4.00miu/L (this was 5 in 2014)

    Serum free T4 level 14.2pmol/L (10.00-20pmol/L)

  • Hi, I'm not as experienced as many others here, but just looking briefly at your results, its odd that your TSH was 2.6 in April and your recent Blue Horizon shows your TSH at 6.19. Thats a very high TSH (6.19) and I'm not surprised you don't feel well. Your ferritin level in April looks rather low to me but that could be quite typical if you have Coeliac disease depending on how long you've been diagnosed with that. But the more recent test Ferritin level looks much better

    Are you actually taking any thyroid medication or not yet?

  • Thanks for replying. I haven't been diagnosed with anything other than coeliac disease so far (January 2011). I was concerned with blood tests earlier in the year which indicated low vit D, low ferritin and low b12. I have since been taking Adcal d3 (2xtablets twice a day) and was taking 3x ferrous fumarate tablets daily until a few weeks ago (which I had to beg my gp for, then she told me to stop taking them so I did). I've just been really tired, having bad mood swings (being totally unreasonable) and struggling with my concentration/memory.Searching for answers as a lot of my symptoms tally with hypothyroidism. Not been taking any medication for thyroid as I haven't been diagnosed yet.

  • Just a thought - are you definitely sticking strictly to your gluten free diet? Nothing with gluten in could be creeping into your food perhaps at home or when you're eating out somewhere? Ingestion of gluten (even a small amount) can cause all sorts of symptoms other than the usual stomach ones.

  • Yes. I stick strictly to the gf diet. Nothing containing gluten in my house and if I'm in doubt about cross contamination while out and about, I don't eat it. Thanks for thinking of it though.

  • That's great, at least you can rule that out as a possibility then. It looks to me as though Hypothyroidism is most likely. Hopefully the Endo should be able to help, though most people's opinions of Endos is that they're not often much more help than the GPs!

    I've recently (after pestering GP for a year) got a referral to an Endo, but asked to go private as waiting time was 3 months. They sent me an appt for a private endo locally but I just couldn't find any information on her or reviews, so I just told the GP I was going to make my own choice. I live in Bedfordshire but was getting to the stage that if someone said endo was in Scotland I'd go! I did consider one in Sheffield, but in the end someone recommended someone in London and I saw him on 1st September. The outcome is quite hopeful now. It was very expensive, but I believe worth it.

    Hope you have some progress with your endo.

  • Thank you. I paid to go private as it was over 3 month wait and I was desperate, then he retired after I had seen him once! Wish I'd gone to see a female endo I found in Salford instead. NHS appointment is almost here now, so I'll cross my fingers for that. Good luck for yours! So frustrating it is such a struggle for seemingly most people!

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