Help! Undiagnosed 'wonky' sensation around gut and liver. Is it my thyroid?

Hi, I am hoping someone can help me identify what is going on for me. For 18 months I've had what I call a 'wonky sensation' around my liver area. When it happens I automatically put my hand to the area and have to stop moving. It makes me really dizzy, my lips tingle and my heart races. It can vary in intensity from a slight 'I don't feel good' to a really intense 'I'm about to lose consciousness' (which hasn't happened but I feel I am teetering at the edge). I have had 2 ultrasounds, an MRI, a colonoscopy, Celiac disease, H-pylori and blood tests - all have come back clear apart from a blood test called ESR which has been slightly high across 3 tests over 8 weeks. Since last January I have been juicing during the day with a light vegetable meal in the evening and have tried being gluten/wheat/sugar/meat/dairy/ yeast free but this has not made it go away - I was strict with this for 5 months but the symptoms still came and since then I have had the odd coffee or a piece of chicken breast but it doesn't seem to have any effect. Over the 18 months there have been periods of weeks without symptoms but for the past 3 weeks it has been pretty constant. Aside from the dizzy 'wonky sensation' I have a constant odd feeling in my right hand side below my breast/liver area. A kind of twisted tightness. I went through an early menopause in my 20s (now in my 40s), have had ME/CFS for the past 5 years and I don't know if thyroid/hormones are all connected to the symptoms and/or the cause. I also have a small swelling on the left side of my neck and this too has been scanned and they found nothing. My doctor says thyroid test is normal but I've read the generic test can be pretty useless. I live in the UK and my doctor is kind but pretty clueless. I have a friend who lives in Berlin who says I should try the doctors over there. Any help or ideas will be truly appreciated as I don't know what else to do. In hope, Frances.

13 Replies

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  • Hi Frances

    The first thing to do is get a print-out of your latest blood test results for your thyroid hormones, with the ranges, and post them. If you don't have them to hand put them on a new post. We are entitled to them but some surgeries take a nominal sum for paper/ink.

    When you say you juice during the day - are you juicing fruit?

    Some hypothyroid people do get low acid symptoms which are similar to high acid as well, so I wonder if your stomach needs some acid in your stomach to assist with the absorption of food. If you also have ME/CFS it might be that you aren't on sufficient thyroid hormones or ones that suit you. What is your dose of levothyroxine?

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  • Thank you for getting back to me. I'm not on any medication. I was juicing with some apples to begin with but got worried about sugars so now just go for green and low gi vegetables with the occasional beetroot and lemon. I feel so frustrated that my doctor wants to manage the symptoms and not get to the bottom of what is the problem. I saw Jan De Vries before he sadly passed away. He gave me 2 things to help with gut bacteria. I have a feeling the early menopause and this are all connected.

  • Yes, Jan de vries was another great doctor. RIP

    Have you had a recent blood test for your thyroid hormones? If not, request TSH, T4, T3, Free T4, Free T3,

    Vitamin B12, Vit D, iron, ferritin and folate.

    Make the earliest appointment and fast (you can drink water). Get a print-out with the ranges and post on a new question.

  • If you think it is thyroid then please do as shaws suggests and have the full thyroid profile tested ! Also the vitamins and minerals tested. Are you taking any supplements ? Come back to the forum with your results and ranges in a new post and people will be there to comment... :-)

    Could it be Gall Bladder pain ?

  • Thank you so much Marz for taking the time to get back to me. I'm seeing my GP tomorrow and will ask for the full thyroid testing and a copy of the results.

    I had my gallbladder scanned and it was clear so I'm not sure if that is involved.

    For supplements I take a multi vitamin, coq10, d-ribose, spirulina and magnesium oil.

  • There are a whole host of not very nice diseases that start with vague symptoms like this. BUT people (including me) go through phases when they just have all this, and then it goes away. I had vertigo and disoreintation phases in my mid twenties - my doc suspected Glandular Fever, then MS (eek!), then this, then that, and I was put through pretty well every test available at the time. Nothing showed up and after a few months I fell pregnant, which put a stop to those symptoms and replaced them with raving nausea. After my son was born the symptoms returned briefly and then disappeared.

    It concerns me that you seem to be on a seriously restricted diet and you haven't explained why. Juicing processes your veg and fruit, it removes the fibre and concentrates the sugars and nutrients. (Can you tell I am not a fan?) What sources of protein are you consuming? You need around 50grams, and animal sources are probably the most biologically appropriate. Are you getting a decent amount of good fats? Don't be afraid of cholesterol - its a precursor to thyroid hormones, and therefore essential! You also need a certain amount of carbohydrate, from decent complex vegetable sources. If your thyroid isn't already under strain, your diet will put it there!

    ME/CFS is a catch all diagnosis that docs use when they can't work out what you have. In a world of evidence based medicine it infuriates me that they trot it out with no evidence at all, and no real treatment. Big suspects would be Thyroid, B12 status and iron deficiency - all are testable, but doctors are often ill equipped to interpret the results, and the labs' 'normal' ranges are not always helpful. 'Normal' is a statistical term - and docs don't do stats at med school! Luckily there are very knowledgeable folk on here, so get your results and post them, with the ranges and we'll have a better idea what might be going on.

  • You're right about ME/CFS diagnoses being 'catch-all'. I was diagnosed with the same a few years ago. I don't have ME/CFS, I simply needed to get my replacement dose right. :D I'm as fit as a flea now.

  • Hi, I so agree with you. I think they've labelled me ME/CFS and then just left me to 'manage my symptoms'. What were you prescribed that helped you? So good to hear you're fit as a flea!

  • T3 :) I remember the day I took the very first dose. It really did feel as though wellness was flooding through my body that day. I've not looked back since

  • It would be interesting to see what your B12 levels are since you essentially went vegan and/or a restricted diet.

    Some of your symptoms are B12 deficient-like.

  • One thing that occurs to me is that most green leafy veggies are goitrogens. Not normally a problem, but if you take them in excess, they can affect the thyroid by impeding the uptake of iodine by the thyroid gland.

    On top of that, you are taking spirulina, which has a high iodine content. And a multi-vit which no doubt has iodine in it - they usually do.

    So, that will mean you have a lot of iodine circulating in the blood, but it can't get into the thyroid gland... I Don't know if this could cause a problem, but it doesn't sound like a very good idea to me. People say excess iodine is secreted, but I've always been doubtful about that, given my own high levels of iodine.

    I'm not a fan of juicing, either, for the reasons Jazz mentions. Without the fibre, could it not be a build up of waste somewhere in the pipes causing the problem? Or even gas. All that greenery is bound to build up some gas.

    It just doesn't sound like a very healthy diet, to me. Where's the protein? Where's the fat? You need fat to be healthy. Good fat, like animal fat, butter, olive oïl, etc. Maybe without the fat and the fibre, 'stuff' is having a hard time getting through. lol Why not cut out the juicing for a while, and see how you feel. Eat a decent 'meat and two veg' - our ancestors lived on that type of meal for générations and it didn't do them much harm. :)

  • Thank you everyone for being so kind. I'm heading to the doctor just now - will request the tests and a copy of my results.

  • Hi all, I got my doctor to do a more thorough thyroid check and I got the results back. TSH is 1.6, T3 is 1.9 and T4 is 12.8. My doctor thought these results were 'normal' but I wondered if there was more to it.....

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