I'm so sick of having all these symptoms and not knowing why

Firstly I'm a 20 year old female with a family history of Coeliac disease and hypothyroidism and my thyroid tests have been:

TSH: 3.5 ref(0.2-5)

t4: 19 ref(9-24)

TSH: 3.2 ref(0.2-5)

t4: 22 ref(9-24)

with negative TPO

I have had chronic constipation since I was 2 and taken laxatives everyday since then. After being undiagnosed with a b12 deficiency for years I recently started injections which helped my tiredness but hasn't got rid of it and a few other things. I have had dry eyes for 3 years now which has only gotten worse and makes it so incredibly difficult to do my university work and use computers. I also have a few other general symptoms such as bad temperature control, I can't stand up for too long in one place because I faint and get a rash that goes up my legs and I have brain fog.

I have been to 3 hospital departments where I have been passed on form doctor to doctor, the majority of who give minimal effort in each appointment ad just don't care. How can it be that I'm taking laxatives everyday, putting 10-20 drops and ointments in my eyes everyday and getting b12 inejctions and a bunch of other things and they can't tell me why?! I'm 20 yet apparently this is all fine. I could just cry and cry at the moment, I honestly don't know what to do next. My biggest concern is my eyes as this effects my life the most, how can i get any kind of job if i can't spend a few hours on a computer?

In terms of tests been done I've had the endoscopy to rule out coeiliacs, had RF, ANA and a bunch of other antibody tests for sjogrens, rheumatoid arthiritus, Lupus etc but its difficult with these as you can have negative tests but still have the disease.

Right now I'm on the anti candida diet to see if this helps me but the more I read into this diet the more it seems like rubbish. Can anyone suggest anything for me??

16 Replies

  • Hi, with that diagnosis in the family ditch gluten... you do not have to have fully blown Coeliac disease to be gluten intolerant.... I am ...and over time whatever it is that is upsetting your system will show up, mine did in the end. I gave up gluten nearly three years ago, strictly so and it has made a real difference. bmj.com/content/345/bmj.e8450 MaryF

  • Are you taking thyroxine? Your blood tests look typical of someone who is on thyroxine but undermedicated. Most people feel better with their TSH lower in the range. Some people need their t4 to be right at the top of the range or even slightly over whilst keeping t3 in range and no symptoms of over replacement. It may be that you need a slight increase in dose. It would be interesting to see what your t3 level is but alas that is rarely tested on the NHS. I wouldn't be surprised if yours was low in range and that could be contributing to your symptoms.

    It may be that you also have low iron. That could explain why you have hypothyroid symptoms even though your t4 is quite good. Iron is needed for good conversion of thyroxine and for getting the thyroid hormones into the cells so they can be used. A serum iron level well within the range and a ferritin level around 70-90 in many cases seems to be optimal.

    As you faint on standing for any time I wonder if you have some level of adrenal insufficiency. This is common with hypothyroidism and can also affect conversion and usage of thyroid hormones. This may be something worth looking into but be warned, the NHS only recognises full blown Addison's disease or Cushing's syndrome and nothing in between.

    I hope you get to the bottom of it soon so you can start to recover.

    Carolyn x

  • Thanks for the reply Carolyn. I'm not on any medication for my thyroid as the doc think its normal, whether it actually is or not I don't know! I think my symptoms fit low Iron too but I'm a bit confused, my ferritin came back as 14 ref(7-90) which seems a bit low but then my iron saturation came back as high, I don't really know what to think of it. Weirdly enough I was tested for Addisons disease, I had a saliva test which came back low so they re did it and it was a lot better the second time around. But I think an adrenal insufficiency is another thing I should look at, along with getting my t3 tested.

  • Hi, sorry you are struggling so much. I'm 38 and hypo and suffered constipation all my life too. I've been gluten free fur about 7 weeks and no more constipation!!!!! It was like flicking a sweet. It's been no bother at all. Give it a go... Nothing to lose. Good luck and get well soon x

  • A switch!!!

  • Thanks for the reply Polina44. Did you ever get tested for Coeliac disease? Also if you don't mind me asking around what age did your constipation start? I feel like because mine started at 2 that theres no chance of it recovering now.

  • Hi,

    I've always suffered with constipation... Spent my childhood on lactulose and then laxatives as an adult to the point where I made my bowels totally lazy and worse. I now go daily!!!! Gluten free has been brilliant for me. I tested negative for coeliac but think I have a sensitivity certainly to wheat. I did suffer from hives after too much wheat containing food... Really itchy back and arms so bad I could have ripped my skin off!! Now that's gone too.

  • Magnesium could help your constipation. You're probably low, most people are. And as you are hypo - which looks to be the case - it wil make your nutritional deficiencies even worse. I agree with CarolynB, you need your FT3 tested, and your cortisol - a 24 hour cortisol saliva test - but you'll have to get it done privately.

    When they tested all those antbodies, did they test for Hashi's? Anti-TPO and anti-Tg. As it's the most obvious ones to test for, they probably didn't! Best get them done, too.

  • Thanks for the reply greygoose. I'm actually taking magnesium at the moment, do you know a good dose to take? I'm just supplementing it myself. I had a saliva cortisol test done twice on the NHS, the first one was low but the second one was normal. My TPO was normal and I didn't have the other antibody test done.

  • You might not be taking the right type of magnesium. Have a look here for types and doses :


    You really should have both antibodies tested. My TPO wasn't very high but my Tg was about 1250.

  • I just wonder wether they are giving you enough B12 and how often you are receiving the injections? Are you receiving them regularly enough?

    Do you get the skin rash after you've had an injection? I'm reading a B12 leaflet and it says "symptoms you don't normally have to worry about once you have had an injection : skin rashes, acne, which happen when the body starts to get rid of homocysteine through your skin as it has enough b12 to do this", could this be the case with you? Although that might solve the rash, there is clearly something amiss to be getting all your other symptoms. I really hope you can get to the bottom of it xx

  • Thanks for the reply Debsydoorknocker. I get injections every 3 months but I'm not sure if its enough or not, it seems like its a big battle to get more regular ones from the GP. I think I wasn't clear about the rash, I only get it when I'm standing up in one place for too long, its very weird.

  • Am I I right in in thinking you haven't ever had a decent doctor during your journey? Might be worth writing to Louise Warvill (probably spelled wrong) of thyroid UK to the list of recommend doctors.

    I visited one from from the list, privately in London. He seemed to to actually know what he was talking about, took time time with me, and at all my old test results. Completely unlike my endocrinologist.

    I haven't haven't yet started to improve, but have finally had some of the tests people on the forum always recommend.

  • Thanks for the reply. I've had very few decent doctors, I tend never to see the good ones again. I think going private is a good idea at the moment.

  • Sounds like you've really been through the mill.

    It's so hard when having loads of tests showing little bits not quite right, but not fitting in with one specific illness. My experience with doctors is that they're awful with with that. They all specialise in one thing and that's the only thing they'll look at.

  • Sodium ascorbate -vitamin c -in the soluble fine crystals form sorted out my constipation. Have you spoken to a good optician about your eye problem? Best wishes for your university studies

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