Newbie here - fatigued coeliac looking for answers & recommendations please

[Ahann]

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. Anyone with recommendations please get in touch. Thanks.

[Ruthi]

Has your GP tested your thyroid? And how low is your B12.

If you can share your results (with ranges) you'll get well informed feedback.

[Ahann in reply to Ruthi]

Thank you. I have some blood results, but not sure what to post? My latest b12 (May this year) 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.

[bluebug in reply to Ahann]

You have hypothyroidism.

Unfortunately NHS GPs will not treat you until your level is around 10. This is to save money.

Also for future thyroid tests have them first thing in the morning around 9am and having fasted for 12 hours as your TSH levels are the highest. In fact nearly all blood tests should be done like that if you are not sure.

I would take a private test which checks your TSH, T4, T3 and thyroid antibodies then find a private GP or endo recommended from here.

Someone should come along and post more info about this as I'm posting on a phone.

[Ahann in reply to bluebug]

Thanks for replying. Does anyone know if an NHS endocrinologist would recognise my readings as a thyroid problem and treat me accordingly?

[MrsRaven in reply to Ahann]

You'll be lucky if you find one, they're indoctrinated at birth!

[Ahann in reply to bluebug]

Can anyone recommend a private gp or endo to go to in West Yorkshire (or North Yorkshire) please? I have no idea where to start really, I just want to feel better! I asked my gp should I keep taking my b12 tablets, iron and Adcal or will it skew test results (in case there is another underlying issue) but was told to keep taking them...

[humanbean in reply to Ahann]

You should always stop taking iron about 5 - 7 days before blood testing to get a true reading.

With B12, any form of supplementation will skew the results, and it isn't really possible to undo the effects of that supplementation. So, just carry on regardless with that. You might want to stop for 24 hours before testing, but no more than that, because it is pointless.

Vitamin D - sorry, I don't know how long you would need to stop that for. Personally, I would follow the procedure for iron, but I have no evidence to suggest that it is either necessary or adequate.

[Ahann in reply to Ruthi]

Hello,

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.

[SlowDragon Administrator]

Suggest you ask GP to also check levels of vitamin d, and folate. These, plus ferratin and B12 all need to at good (not just average) levels for thyroid hormones to work in our cells.

Apparently Vitamin d often low with coeliac (also magnesium)

Are you supplementing for b12 and iron.

Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's - most common cause of being hypo. NHS rarely checks TPO and almost never checks TG.

As you have coeliac, another autoimmune disease, then more likely that it is Hashimoto's

Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online, but all should be doing this with couple of years.

When you get results suggest you make a new post on here and members can offer advise on any vitamin supplements needed

If you can not get GP to do these tests, then like many of us, you can get them done privately

thyroiduk.org.uk/tuk/testin...

Blue Horizon - Thyroid plus eleven tests all these.

This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

Anxiety is a common side affect of thyroid problems - either not being treated, or inadequate or incorrectly treated

[Ahann in reply to SlowDragon]

Thanks. I have had lots of blood tests but the only results I have on paper are from Nov 2014. I will ask my GP for latest results (from May/June this year) and return here for advice. I am currently prescribed 4 x adcal d3 tablets daily, 3 x 210mg ferrous fumerate and 50 microgram cyanobalamin daily. If I get the private blood tests, do I then need to see a private GP or endo to interpret/treat whatever they may reveal? My own GP has referred me to an NHS endo (12 weeks) but I don't want to wait as I have suffered long enough (I first went to the Drs with this problem a couple of years ago and have had to fight to get the B12 and iron supplements). Thanks again.

[Angel_of_the_North in reply to Ahann]

cyanobalamin is hard to absorb (and from your results it's having very little effect), methylcobalamin sublingual is much better or B12 injections.

[Ahann in reply to Angel_of_the_North]

Thanks. I asked for injections (my Mum has to have them, and she has an underactive thyroid) but I was told to try these instead and come back in 3 months for another blood test! Not happy at all. I'm going to collect my May/June bloods at lunch time and will take things from there. Wondering if anyone has experience of Dr Paul Belchetz in Leeds? I am thinking of trying to see him privately asap, rather than waiting to see someone on NHS.

[humanbean in reply to Ahann]

50mcg of B12 in any form is a drop in the ocean.

I take 5000 mcg methylcobalamin per day. I buy it from Amazon. The one I buy is from Jarrow Formulas. Solgar is also popular on the forum. Each tablet should be stuck in the mouth, under the tongue, out of the way somewhere, and just let it dissolve slowly, no sucking or chewing. It is supposed to help absorption doing it that way.

Since you need B12, you should also be taking other B vitamins to keep the levels balanced. Being deficient in one B vitamin and replete in another is not a good idea. I take one capsule daily (I just swallow it) of Thorne Basic B, which I also get from Amazon.

[Nanny23 in reply to Ahann]

Angel of the north is right on. You need methyl b12. Thorne research makes a b12 called methyl guard has b 12 and folate. You need both as they work together. Your b12 should read 1000 or more yours I believe was 196. That's dangerously low. You also seem to be hypothyroid. If I were you and you can afford it I would go private. Get full thyroid scan and check iron vitamin d b12 and folate. It's not uncommon to be low on vitamin if your hypo. Also have thyroid antibodies to test for Hashemites an autoimmune disease that attacks thyroid. It's very difficult to find a good dr. Who knows how to treat it and isn't influenced by government guidelines. You'll have to be very persistent and your own advocate. Stay on here many smart people will help you. There is also a pernicious anemia health unlocked site which is very good. Your b12 is dangerously low so you can go there for help too. Don't give up. I wish you good health. It does take time though so be patient

[Ahann in reply to Nanny23]

Should I be starting on all these before seeing an endo/having further tests or not? I think it's probably low b12 giving me dementia-like issues...

[Nanny23 in reply to Ahann]

You already know your b12 is low. Since you already are taking some b12 your new test won't be accurate for that. I would supplement with any of the supplements people on here suggested. Make sure it's methyl b12 and folate also good bcomplex. I use Thorne research and my b12 is now 1000 so I know it works for me. I'm sure the other brands mentioned on here are also good. Your b12 is so low you may get better results with injections. Your dr. Would help with that. Until those vitamins are optimal thyroid hormone won't work that well but you obviously need thyroid hormone too. Hope you find your way to better health soon. Different things work for different people. It's not one size fits all unfortunately. Good luck be well.

[Ahann in reply to SlowDragon]

Hi,

I got my results from April 2016...

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)

Is it worth paying to see an endocrinologist privately? Will private blood tests show things that aren't listed here?

I have been having really bad symptoms which tick most of the boxes on the thyroiduk.org site

As I said, I now take these supplements:

4 x adcal d3 tablets daily, 3 x 210mg ferrous fumerate and 50 microgram cyanobalamin daily

Thanks for taking the time to try and help.

[SlowDragon Administrator]

There is no test results here for thyroid antibodies, or for vitamin D

TSH is varying, so quite likely that you have high antibodies.

Any idea how much D3 is in the adcal? Most of us on here supplement just D3 - typically 2000iu as base level....but anything up to 10,000iu loading dose, and 4000-5000iu maintenance dose.

Usual recommendation on here is to get Vit D test result level up to about 100.

The Vitamin D can also be lower than it appears (I think this was my issue - see my profile for more)

chriskresser.com/the-role-o...

Your ferratin and folate both very low, as well as b12 obviously. The Thorne's Basic Vit B alongside the sublingual B12 will help the folate improve - as suggested by Humanbean.

Sorry I don't know about ferratin....others will advise I am sure

You can get just Vit D tested at City Assay - £28 - see Thyroid Uk website

Blue horizon Thyroid plus 6 test - £69 - this will check both TPO and TG antibodies, TSH, Ft3 Ft4 and TT4

Or blue horizon thyroid plus 11 at £99 will check everything

[Ahann in reply to SlowDragon]

Thanks very much for your help. Should I get the test done prior to seeing a private endo, or will they likely request the same tests be done at cost to me? I'm not sure about the d3 as I don't have them on me at the moment. I have osteopenia which is why I have been prescribed them (by my gastro, not my gp).

[Ahann in reply to SlowDragon]

These are more results, but I didn't know if they are relevant? And the 4 adcal d3 tablets I take each day are 750mg/200 unit. The Dr told me I had the highest vit D count she'd seen (but I have been taking these tablets for quite a while now).

Full Blood Count:

Haemoglobin estimation: 142g/L

Total white cells:6.67 10*9/L

Platelet count: 208 10*9/L

Mean Corpuscular volume 95fl

Haematocrit 0.44

RBC 4.64 10*12/L

Mean corpisc. haemoglobin 30.6pg

Red blood cell distrib width 12.9

Neutrophil count: 4.32 10*9/L

Lymphocyte count: 1.81 10*9/L

Monocyte count: 0.23 10*9/L

Eosinophil Count 0.17 10*9/L

Basophil count 0.03 10*9/L

Large unstained cells 0.09 10*9/L

Percentage hypochromic cells 0%

[SlowDragon Administrator]

Personally I would get tests done, first, then review my options.

[Jmay88]

You sound hypo and it might be affecting your adrenals too. Check out stopthethyroidmadness.com and consider starting natural dedicated thyroid hormone which contains the needed t3 and t4 hormones. Steer clear of synthetic thyroid meds per my opinion and years of experience. Good luck!! 😊

[Hidden]

Hi, I've read through many of the replies to your post but forgive me if I post something which is repeating. I have Coeliac Disease, I'm 61 and been diagnosed over 40 years, so we do have something in common Not sure if you know or its already been mentioned but Coeliac Disease is an auto immune disorder (obviously you know its caused by an intolerance to gluten) Once you have one auto immune disorder, its quite likely that you may have another at some point - looks like its Hypothyroidism for you.

I also have Hypothyroidism, was diagnosed around 8 years ago. Wasn't feeling ill at all at the time, diagnosed by blood test only. Initially didn't take the medication prescribed but got told off by a consultant (went to see for Coeliac check up) and he said I could end up in a coma if I didn't take it. Wonderful. So I started taking 25mcg Levothyroxine, gradually over time, dose has been increased and now on 75mcg. Recently tried an increase to 100mcg but couldn't tolerate it. Have also seen a private doctor last year, consulations, tests, supplements, spent loads of money and just couldn't continue in the end. But when you present any of this information to your GP, they're either very sceptical about it or they just don't want to know.

The other thing which has happened during the last 8 years is I've put on nearly 4 stone in extra weight (and I don't pig out on food) it won't shift and I've lost hair (not just from my head) I've questioned all this with other GPs in the practice and stupid woman told me symptoms were not thyroid they're menopausal. Told her I was a week from my 60th birthday and done with Menopause 8 years earlier, she then said symptoms were age related! Not been to her again.

So now I'm thinking of trying T3 (switching from Levo / T4) have done lots of research, but still reading up on it to do things carefully. I have a GP appointment tomorrow and going to be brave and try and tell him I can't go on being a fat tired lady and want to have some fun in my 60s!

The other thing I'd have to say is that I have to see a dietitian once a year as a Coeliac overview. The ones I have seen are I'm sorry to say rather clueless, particularly if you tell them you also have a thyroid disorder. Last one I saw said she didn't know much about it (fair enough) and when I mentioned foods which are classed as goitrogenic (foods which will interfere with thyroid function) she had no clue what i was talking about. She said she would find out for me. She called me about 3 weeks later and said there was no information about such things available to her. I was tempted to say 'try googling' but held my tongue and thanked her for calling lol