Help please getting quite desperate

Hello all,

Posted a few weeks ago with a recent diagnosis of hypo, been started on Levo 50 mg. also long history of MDD - depression and a 6 month history of gastric pain, nausea, a lot of fairly gross flactulence. Had every test going all came back clear and a gastro gave me a diagnosis of ibs, which is rubbish, I've had ibs in my lower bowel for 20 years and what I am currently experiencing is not ibs it is gastric soreness, not cramp like ibs and relentless nausea. My best guess is hypochlohydria - low stomach acid and or gastroperisis, slow emptying of stomach. I hoped when I got low thyroid diagnosis and started levo my gastric symptoms would after a few weeks improve, but no, if anything a little worse. On the up side 3 weeks on this dose has levelled my low mood out so depression better after a very long period of nothing helping. Also my fatigue some days seems less and all over aching not quite so horrendous. The gut soreness and nausea is driving me nuts! 6 months, tried cutting out all sorts of trigger foods, eating very little and yet STILL putting weight ON?!? How long does it take on levo before your weight starts to come off? How long before they may consider upping my dose of levo a bit? I'm 12 1/2 stone and only a little 5ft 4 female. I'm beginning to look wider than I am taller, it's so depressing to have no control over your weight and yet be eating LESS than I have in my entire life, it's like someone up there is having a very sick joke at my expense! And could I ask again if anyone else has suffered these sort of gut problems. I don't know how much more of it I can cope with after 6 long months of test after test, daily pain and nausea, feeling that all food is a potential enemy and what ever I do eat is going to hurt me.

So sorry to be such a whinge - bag everyone, not normally this bad, just reached a very low point today

Thanks in advance

Hattie x

17 Replies

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  • Usually you have blood tests every 6-8 weeks and the dosage may change then.Unfortunatly it is not a quick fix .I only put on 12 lbs and it came off within a couple of months. There are plenty on here who have or had gut problems. Some find going gluten free helps. Cider vinegar will help with raising stomach acid.

    Hopefully you will get more detailed advice from those with similar symptoms.

  • Hi Treepie,

    I have been working towards eliminating gluten and lactulose. My appetite is so weird it's difficult most days to face deciding what I'm going to eat. Then when I do eat it causes pain. I am seeing a dietician in May, so hopefully she can help. I've put on a total of 31 lbs and I feel so miserable about this, but I think puncturedbicycles comments about tolerating the weight gain is right. Better that I concentrate on just feeding my body the right nutrients for now. And try to increase exercise, although I don't much feel like exercise at the moment. Anyway, must greet a grip, stop moaning - on.

    Thanks very much for your response.

    Hattie x

  • Go easy on the exercise! It won't help you lose the hypo-weight, but it might make you put more on! Everything you do uses up your T3, so the more you exercise, the more T3 you use. And, being hypo, you will not be able to replace it easily, so you will make yourself more hypo. Just gentle walking, swimming or yoga until you are optimal. :)

  • Thank for this greygoose, didn't realise this. I love walking, but maybe I'm overdoing it. When I feel reasonably ok I do 1 1/2 four or five times a week. Maybe I need to cut this down a bit. I was thinking of starting a yoga group. Thanks for the information

    Hattie x

  • You're welcome. :)

  • Try to tolerate the weight gain for now, as Treepie says you will know more when you're on the correct dose. At this starter dose you can gain weight and/or retain fluid and it will be 6-8wks from starting levo before your dose can be adjusted.

    Have you tried cutting out gluten? Have you been tested for coeliac?

  • Hi puncturedbicycle,

    Thanks for your reply,

    Yes gluten, I think I have all but eliminated, waiting to see dietician in may.keeping my diet as clean and simple as I can, but weird appetite sometimes drives me to eating the wrong thing :-(

    I hear what you're saying about being more patient, I am trying, but this gut pain and nausea for 6 months + is really beginning to bring me down. I use to love my food! Now it's just a cause of pain.

    Thanks for coming back to me, really appreciate it.

    Hattie x

  • Hi Hattie.

    Just to clarify, I think when it comes to being in pain, that is not something you should tolerate w patience. That's a problem that needs fixing. I meant that the weight gain might be inevitable right now what with all the changes going on w new thyroid meds. I would not suggest tolerance when you're saying is your situation is becoming intolerable. :-) That's just annoying. :-)

    Can you ask for a gastro referral? Six months of being in pain is more than enough.

    I attach no particular value to a gf diet unless it is of value to you personally, ie if it solves your problems. I also believe in giving yourself comfort and enjoyment so if it is making no difference to you then enjoy your treats if they make your life easier right now. Obvs if gluten is making you ill you'll probably find it worth giving up.

    Just one more thought, if you plan to be tested for coeliac you need to be eating a substantial amount of gluten for (I think) six weeks before the test.

    xx

  • Thanks puncturedbicycle, I wish the doctors would take this attitude. Previous to getting the hypo diagnosis they were inferring that this was just all part of my depression, all in my head.

  • I know, it is terrible. I'm sorry you're being treated badly. But it is not unreasonable to ask to be referred if you're still not well.

  • Hi Hattie, have you got Hashimoto's? If you have food intolerances, they will cause antibody flare-ups and affect the thyroid's ability to work properly. Cutting out gluten and dairy is a start, and, if you want to look further into this, the Auto-Immune Protocol addresses diet and lifestyle issues. If you have had IBS symptoms for 20 years, the gut might be the place to start. Here is a helpful website:

    paleo-britain.co.uk/autoimm...

    (I have no commercial interest in this site, it is one of many which offer advice)

    Hope you feel better soon.

  • Hi Scazzoh, I don't know if I have Hashimotos, I'm talking to my GP on Friday as the gut pain is really brining me down, I will ask him. Also going to ask for b12 test as can't see anything on blood test about b12.

    I looked at the site about the auto immune diet, thanks for the link. It looks sort of similar to the FODMAP. Diet. I am trying very hard to keep my diet clean, gluten and lactulose free. My appetite is very strange for past 6 months. I am reluctant to eat meat, don't want breakfast, don't eat till lunchtime. I go from zero appetite to starving. Nausea is regular but somewhat unpredictable. I am going to keep talking to GP + dietician in May and also hopefully GP will refer me to a gastro eventually if my symptoms don't improve with the levo.

    Thanks so much for coming back to me .

    Hattie x

  • While these may not be standard hypo symptoms I've had them all - nausea, no morning appetite, only wanting to eat a small selection of foods (I must have been close to turning into an egg). You're just starting on levo and it is early days. You may find this all improves once you're on the right dose of the right meds. This is a good motivation to stay on top of your bloods/dose increase schedule. You should have bloods/dose adjustment every 6-8wks until you stabilise and/or feel better.

  • That's OK.

  • With me it's porridge :-)

    Thank, I hear what you're saying, I'm hoping finding my correct dose will make all this tummy stuff go away. I got my pension early because of my depression, I just want to enjoy my life now.

    I'm looking forward to a nice bowl of porridge in the morning.

    Hattie x

  • Ask GP for a full thyroid panel including antibodies, plus iron, ferritin, folate, B12 and vitamin D. Write them down and give to GP, saying these are the tests recommended by Thyroid UK. I would also ask for gastro referral if you are in pain to rule out inflammatory bowel disease. Good luck.

  • Hi Hattie 19,

    Whingeing is not taken personally on health unlocked. We've all been there.

    So sorry to hear about your gastro problems. I totally get your fear of foods that may hurt you. Bless you. That was me! O yes I used to be very afraid of anything that triggered that awful gastro pain and abdominal discomfort.

    Diagnosed hypothyroid 25 plus years ago. Managed well on meds. Approx 2 years ago taken ill. Suffice to say I think pain relief meds for sciatica and 3 prolapse discs upset my system. My recovery was very slow. You can imagine lots of physio and pain. The gastro problems were new to me. You are probably aware that thyroid problems result in gastroparsisis prone to constipation. Like you, I experienced many food triggers.

    Coming to this site helped me a lot. I now eat gluten free. Got my Vit D checked, i was deficient, now have vit D med prescribed - helps with joint pain (had not realised vit D is a hormone!) Currently I am researching vitamins and minerals believing they are a better alternative to some meds. In addition, I regained some of the self confidence I had lost and was able to continue ensuring doctors listened to me.

    Subsequently, I have been diagnosed with Sjogrens syndrome. Another autoimmune disease found in my bloods (had been picked up 10 yr ago by hospital testing for arthritis, but I had never been informed). Because the friends on this site help so much I was able to face doctors and get the correct tests and even have some lovely doctor look back over my notes! Nowadays, I persevere with doctors if I don't feel listened to I say so.

    I mention Sjogrens, not with the intention of adding to your health concerns but because a) I had many gastro symptoms - new to me, b) doctors did not appear to listen, c) autoimmune disease overlaps, and d) Sjogrens is very likely to be overlooked or unheard of when blood tests are carried out. I am told I am one of only 0.5 percent (England), population diagnosed. 0.4 percent of women!

    Like other autoimmune disease, and numerous illness, Sjogrens is manageable once a diagnosis is made.

    Good luck with your journey to improved health. Ironically, we interact with many lovely people suffering as we do.

    Take care, wishing you well.

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