Sticky Blood-Hughes Syndrome Support
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A question about Thyroid?

Hi everyone. I know that some of you have suggested in the past that I have my thyroid checked. Over the past few months my condition has been stable, the riveroxaban has made a large difference from injecting fragmin and I have been feeling better.  I always suffer from pins and needles and memory loss. this was attributed to a severe lack of B12 again( this has been an issues in years previous) I started injections of B12 every other day for 2 weeks and every 6 weeks a booster. The memory loss seems better, but no change in the pins and needles

I have had a neck MRI and a brain MRI. The neck MRI came back with a slight bulging disc , but not enough to cause any nerve damage at this stage. The brain MRI results have not been sent yet .

I am still very tired all the time, have started gaining weight, not a large amount but 2lb every month even though I train 4 times a week. I also have shaking hands at periods in the day.

There is a history of thyroid, and thyroid eye disease in my family ( grandmother and mother)  I have been tested through the gp for thyroid but they just stay its a normal range. I have no understanding of the ranges with thyroid, can someone explain more? would it also be worth having  private blood test? any thoughts would be great    

I feel at the moment that i am just going around in circles. 3 years on and I seem to be getting more ailments, but no reason as to why?

When asking the gp why my B12 levels are so depleted I was told " It just happens to some people" I am the sort of person that likes to know why? My diet is good and I have been checked for pernicious anaemia so again i am asking on this forum as everyone seems so much more forthcoming with information:)



10 Replies

When testing for thyroid did they do all 3 tests? There is the TSH, T3 and T4. My TSH came back in normal range but have not had the other 2 done yet. I also had my vitamin D tested and found severely deficient there. If you live in US and have this test done you might have to appeal as many insurances deny paying for D test unless osteoporosis is confirmed. My B12 was low too but not deficient. These 3 can happen with a lot of autoimmune disorders.


I live in the UK. I believe the GP just does 1 standard thyroid test. 

Vitamin D has come back in the normal range. My body seems to get depleted though of B12. The last time it came back very low for what it should be. No reason is ever given as to why?

Thank you for the reply😀


Hi, in the main GP's just do the TSH test which is not very reliable, sometimes T3 is requested but even then often the labs do not do it.  These are the tests I do regularly, I pay for them myself through Thyroid UK's recommended testing facilities:

Also some GP's will do the D102 gene test, as some people are unable to convert the synthetic T4 which is Levo Thyroxine to the needed T3.

Often when people do these tests, they find that they do indeed have a problem with the Thyroid and it is simply not, 'Fibro'.

Thyroid UK also have information regarding this, their charity is very informative, far more user friendly than others, also their forum is the NHS's forum of choice.

Naturally I regularly check my D, B12 and iron.


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Thank you Mary. That's a really helpful link and explains fully what I am trying to find out.

Do you mind me asking, who do you use to do your private testing? I have a spires hospital very close to myself and thought of going there for the blood tests

Happy Easter



As there is that hospital near you, you could opt for that, a good plan.   MaryF

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Hi kitti, i had similar scenario of recurrent B12 deficiency. I had MTHFR gene tested and it came back positive. It meant that i was not absorbing folic acid or B vitamins despite being on supplements as they were synthetic. I am on active form of these supplements now. Might just be something for you to think over...

Bw xx


Thank you for the response. Oddly enough last year they found a folic acid deficiency. 

What is the MTHFR test?

I wonder what the link seems to be. Know one an ever give a full answer. 🤔

I appreciate the help



Hi Kitti, 

Its difficult to explain MTHFR but there is a lot of info on if u can afford to take in that much of info. I have never managed to go through it all despite the positive test as its a lot to go through! But i'm sure u can simple google it too. But basically its a genetic test. Only few nhs hospitals do it as part of recurrent miscarriage investigation. You may need to get them done privately if u havent had a history of recurrent miscarriages and even if u had your nhs hospital might not offer this test. 

But i am not sure how much would it cost, so make your own decision after researching it well. Please do let me know if you do get an answer this way..

Good luck xx


Sounds thyroid-ee for sure.  But in my case, my Bs were low (and i was anemic) due to gluten sensitibity.  The allergic reaction in my intestines impeded its ability to absorb vitamins and minerals.  I went gluten free and my life long anemia resolved in a few months!


Thank you Gina. It's very interesting hearing how diet changes can alter your bloods so much:)


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