Hello again

Well I've now been on levo for 1 month at 50mg and I can categorically state that I feel dreadful. My stomach if anything is worse. I can't face food during the day and then want to eat stogy stuff after midnight. Nausea, tummy ache and fatigue are my constant companions. My GP now feels I have gastroparesis as well as low stomach acid. I cannot get off the ppis, only on 15 mg but if I try to come off my tummy gets very sore. Tried a digestive enzymes but that just made the pain and soreness worse. My energy levels within a day go from tolerable for a couple of hours then nearly able to move. I am in despair, my depression, I think, is worsening. My GP has agreed to test me next week and see me 7th April. I intend to tell him I'm not going to be able to go on like this. I have considered doing away with myself it gotten so bad. I don't go out or see anyone because I haven't got the energy, or because I feel sick or in pain. I am totally isolated and reaching the end of my tether. If only the stomach pain and nausea would go I think I might be able to cope with the rest. Sorry my post is so awful but I have very few places I can vent.

18 Replies

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  • I know it's easy to say but hopefully as your dose is increased you should slowly improve. I know we are astonished that we can feel much worse when first on levothyroxine. You should have another increase in about 2 weeks and so on until you feel much better.

    Usually, if hypo we have low stomach acid which means that we need acid in order to dissolve protein in particular. Doctors usually prescribe PPIs which isn't the best idea if hypo. I believe PPIs reduce any stomach acid too.

    Most members take a supplement HCL to provide stomach acid which they take with meals or Apple Cider Vinegar mixed in juice or water with meals.

    Try to take heart and when you next get your blood test it should be the very earliest possible, fasting and allow 24 hours gap between levo and the test and take afterwards. This gives the best results for us, the patient.

    I shall give you a list of clinical symptoms, tick them off and discuss with your GP. Maybe he could add a little T3 to your next increase. T3 is the active hormone and levothyroxine converts to it but sometimes not sufficient if our dose is too low. Increases have to be gradual as it has probably taken years for us to become diagnosed.

    The aim of thyroid hormone replacement is to relieve our clinical symptoms.

    GP should test B12, Vit D, iron, ferritin and folate as deficiencies with these can also cause symptoms.

    Always get a print-out of your results with the ranges and post for comments. Always get a print-out for your own records.

  • Hi Shawn, thanks for reply. I didn't think GPs in the Uk were allowed to give T3, wouldn't I have to go up to an endocrinologist for T3?

  • Also, is it common for people to feel so awful on a low dose. I thought when I started med I would begin to feel a little better, I feel almost worse then before I started.

  • I fully sympathise as I, too, felt awful - I couldn't believe it. The forum wasn't up and running then and I didn't know anyone who was hypo but, thankfully, I found Thyroiduk.org.uk and it is thanks to them that I finally relieved all clinical symptoms. GPs can prescribe T3 if they wish and on a 'named-patient' basis for one of the cheaper T3s. They don't like to do that so many members source their own. I had nausea before diagnosis and after, plus many more symptoms.

    Sometimes it is the fillers/binders that can affect us, not the actual hormone itself.

  • Welcome to the forum, Hattie194.

    I'm sorry you're feeling so awful. It will have taken 7-10 days to absorb the Levothyroxine before it started working so it really hasn't had much time to work yet but things will improve. 50mcg is usually a starting dose as thyroid replacement has to be increased gradually. Arrange your blood test early in the morning when TSH is highest and fast (water only) as TSH drops after eating and drinking.

    Nausea and stomach ache aren't typical hypthyroid symptoms. I think your GP needs to investigate further and perhaps refer you to gastroenterology.

  • Hi clutter,

    thanks for your response to my post, this site it so helpful and I am so very grateful that there is somewhere I can go for general guidance and advice.

    I did go to see an gastro beginning of the year in redhill in Surrey and he said IBS, which I know I've had for 20 years and I am familiar with and well used to managing. To pacify me I was sent for a CT scan, this is after already having had a endoscopy, a barium swallow and an ultra sound. All came back clear so I clearly have some sort of functional gut disorder.

    The CT scan showed really bad constipation and did not show the last part of my bowel clearly. There was some indication of thickening so gps are saying I need to see a colorectal doctor rather than a gastro. Although my GP is saying he thinks my symptoms are gastroparesis and low stomach acid, so yes, I do agree I need to be seeing a gastro, but meanwhile because of what they saw on my ct scan they are sending me to a colorectal doctor.

    I refused to go back to the gastro doctor in redhill because he was rude, dismissive, didn't want to listen to me. There are other gastro I could go back to but I don't think my GP wants to send me to anyone untill I have seen a colorectal doctor to clear my bowel. I personally don't think my bowel is any different to how it's been for 20 years, it's slow, I occasionally get constipated, it's obviously got worse, the constipation I mean, but that's more than likely the hypothyroidism, which was spotted 6 weeks ago. This whole saga with gut pain and nausea has gone on for 7 months.

    Thanks for advice about pre testing, very helpful.

    I know it's early days for the hypothyroid thing to be improving but I have been living with the gut pain for 7 months now with noresolution and after a battery of tests. I have also had awful problems with depression after losing my job, having to claim benefits and trying to secure early pension, which I succeeded doing, thank god, so at least now I don't have financial problems.

  • To pacify me I was sent for a CT scan, this is after already having had a endoscopy, a barium swallow and an ultra sound. All came back clear so I clearly have some sort of functional gut disorder.

    I'm guessing that a doctor used the phrase "functional gut disorder". And I bet that the doctor didn't tell you what they meant by it.

    It basically means that the doctors can find no physical reason for your symptoms, so (they think) your problem is psychological.

    I've been told this kind of garbage myself. A few years ago I had an endoscopy and a flexible sigmoidoscopy (like a colonoscopy but doesn't go as far up) and was told that apart from mild gastritis there was nothing wrong with me and I must have a functional disorder. It was a very long time before it dawned on me that the doctors thought my problem was in my head, and that I was attention-seeking and making it all up.

    It was then another long time after that before it occurred to me that there are yards and yards of intestine and bowel between an endoscopy and a flexible sigmoidoscopy that never get seen by either. So how can they say that the problem is all in my head? It seems that if the doctors can't see it then it doesn't exist.

    If you ever decide to push for further help ask for a capsule endoscopy.

    thh.nhs.uk/documents/_Patie...

    At least a capsule endoscopy looks at a few yards more of the gut than either an endoscopy or a colonoscopy. But note that some NHS hospitals don't offer it - like my own local hospital which is awful. So you might have to be referred out of area - and in this day and age of squeezed budgets you might get nowhere.

    When you tried digestive enzymes what did you try? Getting off PPIs is a nightmare. Been there, done that etc... I think it would help if you did lots of work on improving your gut health in every way you can. Then you could reduce your PPI and substitute with ranitidine (Zantac), and gradually switch over completely from one to the other. I could never come off PPIs without taking long diversion via other things but I did manage, over a long period of time, to switch to ranitidine then come off the ranitidine.

    Some things that have helped me or I've read about helping others :

    L-Glutamine powder (not capsules, they are too expensive and too low dose)

    Slippery Elm

    Marshmallow Root

    Probiotics - lots and lots of probiotics with high bacteria counts - choose lots of different brands to get a variety of good bacteria

    Treating candida - caprylic acid, reducing sugar in the diet, and lots more

    Cut down or eliminate simple sugars in the diet and reduce carbs. Replace with good fats.

    Soluble fibre - psyllium seed husk, linulin and others - take cautiously to begin with, build up slowly and drink loads and loads of water with them.

    Kefir - make your own or buy it.

    Fermented vegetables

    Betaine hydrochloride

    Digestive enzymes

    Apple Cider Vinegar "with the mother" - don't throw it away - see :

    en.wikipedia.org/wiki/Mothe...

    Digestive bitters

    Bromelain

    See this post for a good suggestion :

    healthunlocked.com/thyroidu...

    This link is the 6th in a series of 6 - start from part 1 and work forward :

    chriskresser.com/get-rid-of...

    These links are worth reading too :

    scdlifestyle.com/2012/06/hy...

    scdlifestyle.com/2012/03/3-...

    scdlifestyle.com/2012/03/ho...

    scdlifestyle.com/2013/10/4-...

    The more you know about your own condition the easier it becomes to cope with it and the easier you'll find it to decide whether stuff you research and read is worth following up or not.

    Don't try doing everything at once. Maximise your gut health before trying to reduce come off PPIs and then do it very slowly, substituting with things that may help. And keep good records.

  • A couple of things I forgot to mention...

    If the valve between your stomach and your oesophagus is damaged and won't close tightly any more then you may well be doomed to take PPIs for ever. The pain you get may be the lower part of your oesophagus being burned by stomach acid. The stomach is designed to deal with stomach acid, the oesophagus isn't.

    If this is the case then you will have to take remedial action (by taking supplements) to keep your nutrient levels up. PPIs reduce nutrient absorption.

    Another issue affects anyone who takes NSAIDs like aspirin or ibuprofen or naproxen (there are others) on a regular basis. These damage the stomach. PPIs can help to reduce or eliminate that damage, and as long as someone takes NSAIDs they will have to take PPIs or something similar.

    After all the struggle I went through to get off PPIs then ranitidine, I then got put on naproxen about 3 years later. I was offered PPIs, but refused those in favour of ranitidine. I have a feeling that ranitidine doesn't cut stomach acid quite so ruthlessly as PPIs, but can't be sure. But I hope as a result that the odd vitamin and mineral manages to escape from my food and into my body. Sadly, the painkillers I take - the naproxen - aren't optional.

  • Thanķs for coming back to me humanbean,

    The gastro doctor i went to see made me feel like it was all in my head, part of the depression and several gp'S who i saw last year. I kept going back because i felt so crap but they all had me beleive it was 'depression'. My current gp is i think pretty good. Hes listening, re testing me early because of symptoms, which is encoraging. Its just getting through the weeks alone. I have very elderly parent who ive seen once since boxing day, they need and deserve my help, i cant go on and on being so ill, i need to get back to helping them. I need to get back to just living and enjoying my life. I got early pension cause of my depression, im so lucky in that respect. After 30 years of slogging my guts out as a social worker i would like to try and enjoy my retirement! My dad is 97 and other than a heart attack a year ago he hasnt had a days illness in his entire life, i thought i had his genes! Jokes on me i guess :-(

    Im so sorry to hear about all the problems youve been having, i really am, my heart really does go out to you.

    You seem to know a lot about the digestive system. I will have a look through the links, thank you so much for all this.

    Hattie x

  • Getting nutrients and thyroid hormones optimal for you will help with any depression. Getting the gut working better will help too.

    Doctors have been telling me that all my health problems are in my head for decades, so I can empathise.

    Regarding the list of things that I suggested above... I'm not saying that any of my suggestions will suit everybody, nor am I saying that anyone will need all of them.

    Another issue is that some suggestions may help for a while then may stop helping. I took psyllium seed husk in lots of water for about 4 years and it was a huge help. Then I had a colonoscopy and something changed (don't now what) and I could never tolerate psyllium seed husk again.

    One of the responses below mentioned something I should have added to my list - giving up gluten helps loads of people, whether or not they are diagnosed with coeliac disease. I was told I didn't have coeliac disease after testing and as a result I carried on eating gluten for another 5 years. When I finally went gluten-free as an experiment it had lots of good effects for me.

    But of giving up gluten doesn't help then I think people should just go back to eating it again.

  • humanbean has given good advice as doctors don't appear to know hypothyroidism is a whole body experience and everything slows down. That why thyroid hormones (optimal) relieve all of our symptoms. This is an excerpt from following link:

    People with hypothyroidism sometimes complain of constipation. The disruption in hormone production has likely caused a slowdown of digestive processes.

    “There’s just no motility in your gut,” Miller says. “This is one of the top three most common symptoms of hypothyroidism I see.”

    foxnews.com/health/2013/08/...

  • Thanks shaws, ill have a look at the link.

    Hattie x

  • I am new to this page but when she mentions severe constipation I wonder has she ever been tested for coeliac disease. I had IBS for 30 years, Bloating, severe constipation (4days or more) constant pain and feeling rotten. 3 years ago I went on the FODMAP diet and within a week symptoms were better and constipation gone. It turned out I was not able to digest fructose or sorbitol or gluten. I tried digestive enzymes too but I think they over stimulated the gut . Treating candida did nothing either. Fibre I can't handle well either. I was diagnosed hypo 2 years ago. On 50 first , now 50, 75, 50 on alternate days. My digestion is sorted and my thyroid. I am just back from Rome. It took 2 years before everything came right. There is an answer.

  • I am glad this has been resolved for you and the fact that both digestion and thyroid are o.k. now.

  • Thanks gerjoy, that gives me some hope to hold on to.

  • Try googling 'The Thyroid Secret' your doctor will unlikely tell you about this as it is an American study. But your story is similar to mine and similar to so many on the thyroid secret documentary. I was told, that I would be on thyroxine for life. But following the thyroid secret my medication is now half and i have now got rid of the extreme fatigue, depression feeling and brain fog. I cut out Gluten, Dairy, Coffee, processed foods and sugar!! I know it sounds miserable, but it's not and it's worth it to feel normal again. I eat lots or raw white cabbage, cress, mackerel and lots of vegetables, fruit and meats and fish. I cut one out every few days to start with and I can honestly say I have never felt better. I also had to reduce toxins exposure in the house. Remove any air fresheners, look for parabens in skincare. It sounds a lot, but it is a drug free way to feel better. Really worth seeing what you can access on line. You can buy the downloads or I beleive the Doctor who features on the thyroid secret has a book too. You will need your rest so don't expect too much of yourself to start with. Small steps and you will get there. I was practically bed ridden only a few years ago.

  • Thank zoe41thyroid, I'll look at the link

  • The Thyroid Secret, Dr Isabella Wentz

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