Update on tests

Endoscopy wasn't too bad,

I have had biopsy s taken clo test done and I have small sliding hiatus hernia

I puked from start to finish, they had to sedate me three times and numb my throat

They also testing for Helicobacter pylori. It's a stomach infection that can lead to stomach ulsers and cancer of stomach, but 3 sets of antibiotics and peptides can sort it in some cases.

I'm not sure what there going to do regarding the hernia, but I know they can correct it with key hole surgery.

So got about 2-4 weeks to wait for all results.

I was told by my doctors that the blood testing centre refused to re test my ANA from feb, ( it came back positive 1/80 , homonogious pattern, dr was try to check it wasn't a false positive)

48 Replies

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  • Mandiejj, you are very stoic if you can describe that as "not too bad". Sounds very unpleasant. I was gagging so badly when my throat was numbed before putting a camera down they kindly waited until the general anaesthetic for thyroidectomy knocked me out before putting in the camera.

    Is your GP treating you for Lupus?

  • They carefully noted "Severe gag reflex" on mine. After it was all over. :-)

  • I say not too bad, as I expected to be pinned down and not been able to breath. It's def not something I'd like repeated mind.

    GP is treating me for 'nothing'

    I think specialist was concidering Lupus and Crohns. But I am now hopeful it's not crohns as no ulcers were in stomach. ( I think that's what they look for) .

    I'm back at specialists on 6 June, so hoping I'll get answers.

    On reading about Clo positive and Anti parietal cell antibodies, and ANA 1/80 it suggests possible Thyrioditis

  • Mandiejj, autoimmune thyroiditis is confirmed with thyroid peroxidase and thyroglobulin antibody blood tests. I thought Clo positive was for HPylori, anti parietal cells for pernicious anaemia and ANA positive for possible Sjogrens, Lupus, RA etc.

  • I don't know what results of Clo is yet, but yes it is H pylori.

    I'm just wondering if it's all connected.

  • Mandiejj, Having one autoimmune disease does predispose you to others. I think slower motility due to hypothyroidism makes a better environment for bacteria like HPylori to exist and multiply.

  • Clutter,

    I have just had it confirmed a positive diagnosis of H Pylori, I have also a blood test booked for

    TSH (and T3&4 if required) and Anti SM and Antiphospholipid antibodies for two weeks time x

  • Mandiejj, that's a downer but eradicating it should make you feel better. If you post a question about HPylori other members will be able to share their experiences and treatment.

    If you are on thyroid replacement leave 24 hours between last dose and thyroid blood draw.

  • Clutter, no I'm not on any meds at the min

  • You really do need free t4 and free t3, to get an idea of thyroid function. Also thyroid antibodies to look for Hashimotos Disease. TSH is not a complete thyroid panel at all.

  • Faith 63,

    Dr said if the bloods show issues on TSH they automatically will do T3&T4, it was the best I could get.

  • if you get no help or TSH is high, but they won't treat, you can order your own thru Blue Horizons, or so i have heard.

  • I had an endoscopy ten days ago as actually forgot to ask the surgeon yesterday what, if anything, he saw. I insisted on sedation, having been told this wasn't an option for such a simple procedure - "like swallowing a piece of spaghetti" - not!

    In the end I was in hospital for 7 nights for the week preceding the endoscopy with some sort of abdominal sepsis/ UTI. I got in such a stew about it that nurses and even one doctor all tipped me off that I should write on the consent form "only with sedation" and then they would have no choice. As I was in a hospital bed with a cannula in my arm anyhow I don't know what all the fuss was about but it's worth knowing that if you are phobic about this particular procedure then you have a right to ask for sedation and get it - see NHS choices. You wil need recovery time and a lift home though and don't get to see the camera going down. I do also remember gagging madly and trying to evict the tube but must have gone back to sleep immediately. Very glad I was sedated in the end although the surgeon made a joke just beforehand about tethering me and sticking down the largest camera they could find!

    I think all that showed up was reflux. I have a very unusual type of RA with high ESR, little joint pain -severe pain in my peripheral nerves and a lot of tooth and jaw pain with nose bleeds and dizziness.

    My thoughts are that it is actually a rare type of Vasculitis instead of or as well as RA. My hypothyroidism is said to be well controlled whereas other things aren't. I don't think the flu followed by chest infection followed by abdominal sepsis/ UTI (CRP reached 151) are just a coincidence. As you probably know lot of connective tissue diseases affect abdominal and renal systems even if not actually IBD. The lack of moisture production (primary or secondary Sjogrens) or digesting of unhealthy acids and tissue from sinuses and further down the digestive tract can often be the cause I think.

    That's so bad about the lab refusing to re check your ANA - same happened to me with my FT3. I can't see how a GP's wish to get something checked can be undermined in this way?

  • Most doctors will say your hypothyroidism is well controlled, but i doubt it is. Pain is part of the issue with thyroid. Have you had free t4, free t3, anti thyroid antibodies tested? This is just the start.

  • I was tested a month ago - not ft3 but FT4 is lower half of normal, TSH is suppressed and I have so much else being investigated that does flag up as high (ESR is currently 66 for example) that my thyroid comes very low in the queue of concerns. GPs won't do more tests anyway and I have no endo - just a rheumatologist, neurologist, surgeon and max facial consultant (soon). If I do anymore research I would need to study immunology at degree level! I'm moving to a new area soon so will be interesting to get a new GP and new specialists who might re diagnose me and turn everything on its head - but I won't hold my breath that they will suddenly take an interest in my thyroid!

  • I am sorry that you go thru this! If your thyroid ft4 is on lowish and TSH is suppressed, that is a pituitary issue and from what i understand, inflammation can play a role in odd pituitary readings. How do you feel? What are your symptoms like..i can relate tho, i never feel well.

  • never mind, i see that you have headaches among other issues, but i would stay clear of the steroids..they do not treat the disease in that, you do not know why this is happening. Steroids will bring down your inflammation, but it is temporary and they are very hard on bones and will shut down your Adrenal Glands. People on steroids often get Addison's Disease and Cancers and other illnesses. Just a warning to not do them often or for prolonged periods, especially since you seem to be undiagnosed. You could ask for thyroid antibodies at least..the thyroid issue or i should say, an autoimmune issue, where your immune system is attacking your thyroid can cause high sed rates, headaches too. It is nothing minor. That it is so common,,makes me wonder why this hasn't been done.

  • Thanks for your concern. I don't take steroids - well I have done occasionally in short bursts but not for 18 months now. I

    I was only commenting here because of the endoscopy. I wanted to share my recent experience to show that sedation should be offered as a matter of choice to all NHS patients.

    I don't trust my doctors implicitly but I do trust them broadly so assume they are right that my problems aren't specifically thyroid related. The GP who spotted the RA and referred me four years ago did this partly because I have hashimoto's so acknowledged autoimmunity.

    When we relocate I will probably get reassessed by new GP practice and new rheumatology team so maybe this will be the time to query whether 100mcg Levothyroxine is actually doing its job or not. Everyone in my health team is baffled by my symptoms and I am very drug imtollerent so have gone through long stretches of being off RA immune suppressant drugs but actually seem to get worse.

  • So sorry for your experience. I'm hoping in two weeks I have either results and diagnosis or more tests incase they think it's something else

  • My daughter just had an endoscopy where you swallow a small camera and wear a belt containing a computer for the rest of the day. The camera transmits pictures to the computer as is goes through your system, and you give the belt back to the hospital at the end of the day. They don't want the camera back. Quite an improvement on the current system, and at least one example of modern medical science being an improvement on the more traditional approach!

  • Does the camera dissolve then or come out the other end? This makes so much more sense than an endoscopy.

  • It comes out the other end. It did have her up a few times that night as her body rejected the foreign object in the traditional way, but it was much better than the traditional endoscopy, which she had already been through a couple of times.

  • I have had a sliding hiatus hernia for over 15 years. It sometimes slides up into my chest and can be very uncomfortable. They usually tell you to lose a little weight which should help and also give PPI's such as Lanzoprazol or Omeprazole. They don't usually offer surgery unless it is very very bad. Clemmie

  • Barrister,

    That's good, I can't see them advising weight loss, I'm 5"7 and vary between 9'7-9'12

  • The endoscope makes you VOMIT? Nobody told me that. I thought they were supposed to numb your throat and sedate you so you were pretty much out of it? I have a phobia about vomiting (I don't think I've done it more then about four or five times in my whole life and it fills me with terror). I'd been thinking of being referred to a gastroenterologist for this, now I am not so sure....

  • It is your right (see NHS choices) to demand spray and sedation so don't panic!

  • Ah, too little, too late, Twitchytoes. Now I've heard the word vomit and my reptile brain has gone into panic mode. Sedation will need to include a rhinoceros tranquiliser dart now....

  • I am pretty awful at coping with vomiting. I was offered sedation for endoscopy but refused - I didn't want to take a strong sedative. Indeed, I was impressed by the leaflet sent out with the appointment which carefully explained the option. Made it abundantly clear that I could choose either with, or without, sedation. And my choice remained open.

    They did numb my throat, and nothing about the procedure was at all painful. However, I did gag strongly as the endoscope was being fed in. Once in, I was fine.

  • You refused sedation, Rod? What are you, a madman? What the hell's wrong with sedation? More sedation, I say. In fact, they can give me yours as well as mine....

  • How do you drive home afterwards?

    Not allowed, and not at all sensible, after sedation.

    I also refused a general anaesthetic for lower wisdom tooth removal (and mine were very tough to get out), not once, but twice.

  • Oh, b*lls of steel, right there! I've been sedated twice; first time I attempted to molest a priest and found it hugely funny (I was driven home) and second time I got stroppy with the bus driver and made him double-check he was taking me in the right direction, apparently - me, I remember none of it.

    But you're supposed to be accompanied after sedation, don't you know? You are obviously too manly for that! Me, I want to be accompanied to every single doctors' visit. It's gypsy blood, you know; they believe you go with your support team, always.

  • I didn't have anyone to accompany me!

  • That is the saddest thing I ever heard; have a virtual hug. X

  • I think I was only lightly sedated even topped 3 times, but I have worst gag reflex I know

  • And yet you still thought it "wasn't too bad", Mandie? You are definitely made of sterner stuff than me. Your mum obviously fed you porridge AND spinach when you were little...

  • Chancery

    I think the fact they kept topping my sedation up helped, as I don't remember much, and don't think I struggled, but I do remember gagging so much and vomiting , however it must have just been bile as I never ate from 6 pm the night before and procedure was at 3

  • It must have been like a very bad night on the tiles - vomiting and remembering none of it the next day. Let's hope you weren't attempting to sing too!

  • Chancery

    No , but as I started to come to I realised I had a oxygen tube rammed up one nostril and bleeding from the other, I sharp jumped up and asked for some water so I could go home , I didn't hang around to even ask why biopsys were taken, or if they had the Clo results. THEy gave me a written copy of what they had done, so following day I phoned up for Clo results, which I was informed were positive. So there writing to my dr for them to prescribe the H Pylori treatment. I still have no idea what the other D2 biopsies were for.

  • Nasty. No wonder you ran for it. Can I ask why they were testing you for H. Pylori? I've had the treatment myself, twice, and wouldn't recommend it, but you may be in a much different position from me. For a start they've actually looked inside your gut; they never checked mine. What is it they suspect H. Pylori of doing?

  • Hi chancery,

    I've under gone many blood tests now a ridged camera "up" MRI And now endoscopy.

    I've been suffering really bad headaches and originally my optician suggested I be tested for Temporal Arterialitis, so had many bloods taken while on high dose steroids to be on safe side.

    Bloods came back neg for those so dr switched me to naproxen which sent my IBS off the rails and I got severe stomach pains.

    In the bloods it showed B12 at 396 and folate at 2.7 ' so low folate and now normal B12 level. So ruled out pernicious anemia. However the headache all continued and stomach and abdominal pain.

    ( ANA antibodies 1/80 homogenous pattern and positive Anti parietal cell antibodies where also detected in that test)

    So after numerous trips to dr, he booked me specialists as those two anti bodies are relevant to gut issues, and he wanted to rule out celiac , and IBD ( crones and colitis )

    By this point I had been getting so many meds to counteract the bad pains so I was put on omeprezole. As I was getting sickness feelings now constantly. ( not being sick, just nausia like severe morning sickness) they were increased to 4 a day but I took a reaction and came out in blister all down my arms within 4 hrs of increasing from 1 to 4 tablets.

    So I had cameras and MRI .

    camera up was to rule out colitis, MRI to rule out brain tumour and camera down to check why I was suffering sickness and weight loss.

    So I had Clo test done together with D2 biopsies. I'm unsure why! But they also fount the sliding Hiatus Hernia during the procedure.

  • Just to add,

    The two anti bodies are indicators of gut issues, they have turned against my own cells so they are investigating why.

    H Pylori can increase stomach cancers as well as ulsers so due to all my pains and sickness and excessive tiredness they were throwing darts in the dark now I think

  • Starting triple therapy today

    OMG meds in

    2x 500mg Amoxicillin twice a day ( so 2 g) and1x 500mg Clarithromycin twice a day ( 1g) , and 2x 20mg omeprezole twice a day. wholly crap, these are going to be interesting

  • My, that's a catalogue of disaster, you poor thing. It sounds like they're just throwing everything at you in the hope something sticks.

    I have to say though I wouldn't be keen on taking h. pylori treatment on the strength of your history, since they are not mentioning a stomach ulcer - the only legitimate reason for doing the treatment, in my opinion.

    H. pylori treatment is not the wonder cure they've told us it is. It is actually preventative of throat cancer and it turns out that killing it all off can cause oesophagitis, or worsen oesophagitis if you already have it. That happened to me. I actually had gallstones but no-one bothered to test me and the assumption was made that I had a stomach ulcer. I was found positive for H. pylori and so they treated, twice, because the first lot didn't clear it.

    Unfortunately it proved to be the case for me that it made my oesophagitis much worse and I now have it all the time, while before I only got heartburn occasionally.

    If you look at the work of Martin Blaser you can read all about this. He has a very good book on the gut. You might find it useful. He is a research scientist, not an alternative health practitioner, and he's not alone in questioning the value of H. pylori treatment.

    Anyway, you might want to check out the doubts about it before you embark on treatment. If they are not sure you have an ulcer I would question the value of it - it may very well make things worse. And it's a terrible treatment - goes right through you like a dose of salts, killing everything in it's path. Your gut flora may never recover!

  • Chancery

    As I teested positve, I want to try to see if it works, nothing can be worse than this sickly feeling and belching. It's so embarrassing. On a plus, my IBS seems to be calming down now

  • Chancery,

    Wow, Martin Blaser has a lot of information regarding leaving the bacteria well alone when it's active.

    But I'm desperate, I can't live with this, it's causing me missery and pain. So unfortunately it has to go!

  • Ah well, you gotta do what you gotta do. Hopefully it will prove beneficial and I won't be patting you on the back with consolations further down the line - if so, I promise not to say I told you so! The very best of luck with it all. X

  • Go for it with sedation Chancery - the next thing you will know about is the offer of tea and toast and pretty pics of the inside of your gullet. Two weeks ago I spent a whole week in hospital with potentially life threatening and excruciatingly painful sepsis, four sites for cannulas and all I was worried about was my endoscopy because the surgeon doesn't offer sedation! I made such a fuss that I galvanised half the nurses and even a few doctors to my bedside telling me to stand my ground. Really was a piece of cake under sedation and the main drawback was missing my hospital lunch! X

  • Had H Pylori treatment, and apart from a few side effects it was fine, however it's made no difference to the way I feel, so I think I can safely say that wasn't causing the sickness sensations. I had further bloods done which are showing my iron levels still dropping, and I had TSH test which shows in range.

    Ferritin 76.4 (13-300)

    Serum TSH 1.34 (.35-5.5)

    B12 366 (190-910)

    Folate 2 (3.3-999999)

    I have another dr appoint this week as he is concerned with the sickness, I'm still taking PPI as it does make a difference and I have anti sickness meds, which are making little difference. I'm still really tired and will nod off regular if sitting relaxing.

    Are the TSH levels normal, or on low side? I asked for free T3 and free T 4 but I was told they are only conducted if results are out of the norm.

    I know my iron levels are prob causing the tiredness and possibly these headaches but I want to know what is causing it not just take folate, as last time I was prescribed folate acid by 1 dr, but told not to take them by another! So confusing. I just need fixed or an answer.

    Dr I'm seeing this week has already suggested repairing the hernia would sort the sickness, but if it's only a small sliding hiatus hernia I wouldn't think it would make this much difference.

    Any advice?

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