Feeling very poorly

My anxiety is so bad it's debilitating. Tweaked my Levo on the 2nd December alternating between 100/125 because my NHS readings said I was borderline Hyper and my private bloods said I was Hyper. Just took 100 for the first 5 days and then went onto alternate days from there and started to feel better for a week or so. On Tuesday (after falling out with my parents) all my anxieties are back, severe symptoms which I can't seem to control, same symptoms that I experienced around September when my bloods confirmed I was taking a little too much Levo (for the first time in 10yrs). I am so up and down and just don't know what to do any more. Feeling desperate beyond any feeling of desperate I have ever felt. The only thing that helps is popping half a 2mg tranquiliser to calm down so I know it's anxiety.

Started a vit B complex with 1000mcg B12 and because I am looking for answers I am wondering if it doesn't suit me. Also started this week going gluten free but as I have been reading, starting that diet can do more harm than good because I am taking away something that my body has had for the last 53 years and may have reactions.

Reading so much conflicting evidence at the moment I am very confused and just don't know what to do anymore to help myself. Nothing I try seems to work and I am now feeling so ill. Plus it's now been confirmed that I am Hashimoto due to high antibody readings from my private blood test

Thinking it might be my Levo I have decided to just take 100 a day

33 Replies

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  • Jefner, Looking at your last results healthunlocked.com/thyroidu... biochemically you don't need to reduce dose as reducing to 100/125mcg will have dropped FT4 into range. Your FT3 was only mid range and will also have dropped. See how you feel on 100mcg, but if after a week anxiety hasn't improved, or you feel hypo, consider reinstating 100/125mcg alternate days.

    Hashimoto's may be causing the anxiety. If so, having suppressed TSH may reduce flares and symptoms. Gluten-free may be helpful in reducing flares and antibodies but you're likely to need to trial it for at least 3 months to notice benefits. A few people experience withdrawal effects for the first couple of weeks but most notice some improvement in symptoms within a couple of weeks. Hopefully you will be in the latter group. It may not be the best time to initiate gluten-free while you are so anxious and there's no reason why you shouldn't wait until you are less anxious to trial it.

    If anxiety increased when you started methylcobalamin and B Complex perhaps you could stop them for a week or two to see whether the anxiety improves. I don't think they usually cause anxiety.

    ____________________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Hi Clutter, was so wishing you would reply cus you are so knowledgeable honey. I wish I could get my head around as to what "suppressed TSH" means because my little brain can't work it out. Is there a really basic idiots guide way of telling me what it means. I am wondering if I am having a flare from falling out with my folks, very stressful looking after them, and it has been praying on my mind cus my mum said she was sick of me...been in tears ever since and then I get nasty symptoms!!!

    I have looked up hashi flares and can't seem to pinpoint how I know I am having one. Are there set symptoms or different with everyone?

  • Many years ago, the TSH test was very much less sensitive than it is today. The term "suppressed TSH" then meant that it was below the threshold of being measurable. This might be typed up as "< 0.1" or similar - meaning "less than 0.1 which is as low as we can measure".

    As we are generally on what is known as "third generation" TSH testing, the sensitivity is far, far better. But that means that instead of "We can't measure it", we now get incredibly small numbers like "< 0.001". But most of the time, there is slightly more TSH than that.

    So the term "suppressed" no longer simply comes about when the lab can't measure - but has to be a chosen number. There is much uncertainty about which number, and who actually decides! It will also be likely to vary from one lab to another.

  • Jefner, suppressed TSH just means it is low. <0.1 is usually defined as suppressed.

    Symptoms of Hashi flares differ. Some people experience pain in the thyroid and throat during a flare and may have a swollen neck/throat. It can make some people feel hyper as well as hypo and that may cause an increase in anxiety trigger panic attacks.

    If you suffer generalised anxiety the argument with your parents may have triggered an anxiety attack and it may not even be related to thyroid or Hashimoto's.

    _______________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • so in other words, the lower the TSH readings the better. Low readings means that the thyroid is still doing it's job to a point?

    Wasn't so much an argument but wouldn't bother me in that way normally as regards an anxiety attack. How I am feeling now is exactly how ill I felt when I found out my thyroid had fluctuated. Yes I have a long history of panic attacks but the Seroxat I am on put paid to those by suppressing the symptoms and until recent months I hadn't experienced such anxiety. Also can't decide whether I am getting discomfort in my kidneys as I did a little manual cleaning of my patio the other day so might be having achy muscles around there from that. Just feeling really paranoid too.

    Have the Hashimoto's Thyroiditis book by Izabella Wentz to read, also a book on B12 and another on immune system recovery plan by Susan Blum.

    As regards going gluten free it seems, from what I have read on here, that most benefit from it. I have always been able to eat what I want and have never had any digestive or tummy problems so I am wondering if I would benefit having a blood test first to see whether there is sensitivity there?

  • Jefner, suppressed TSH when taking Levothyroxine means there is very little thyroid activity. This can be good for Hashi patients as little/no thyroid activity reduces the likelihood of Hashi flares.

    If you don't have digestive issues it's unlikely you have coeliac disease due to gluten intolerance and your GP will be unlikely to want to do a tissuetransglutamine (tTg) test if you are not symptomatic. If you are going to ask for the test you should continue eating gluten for up to six weeks prior to tTg else the result will be false negative.

    There may be other benefits to cutting out gluten in non-coeliac patients ie reduction in Hashi flares and antibodies so a 3 month gluten-free trial may be worth a go.

    _________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • I didn't think I was coeliac hon, just read that going gluten free helps many with flares and reduces high antibodies which from my private blood test I appear to have.

    "suppressed TSH when taking Levothyroxine means there is very little thyroid activity. This can be good for Hashi patients as little/no thyroid activity reduces the likelihood of Hashi flares" .......... is it the high antibodies I have that would cause the flares then?

    .........as mine read 0.03 (0.27 - 4.20) I gather that mine is suppressed then? If there is little or no thyroid activity how does it reduce the likelihood of flares? Does the Levo act as a replacement then due to my thyroid not being able to do the job itself?

  • Jefner, Antibodies are a response to an autoimmune attack (Hashi flare), not the cause. Antibodies are high after an attack and subside in between flares.

    TSH 0.03 is suppressed. Thyroid activity 'invites' a Hashi attack, the less activity the lower the likelihood of an attack.

    Levothyroxine replaces the low T4 caused by the Hashi damaged thyroid gland.

    ________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • oh boy Clutter you really are so very patient and wonderful with me, and I am so grateful for your help. There is so much to learn, and as you said, just read bits at a time or it will become overpowering. Learning about Hypo is one thing but with Hashi's it seems to be a completely different ball game with so much more to learn. Is there a known timescale in antibodies calming down after an attack. ie. couple of days, a week, a month?

    Am wondering if the reason mine were so very high was due to my having picked up 2 colds in a month, the second one being more severe.

    Do you have Hashi's hon?

  • Jefner, If there is a timescale, I suspect it is different for everyone.

    I did have Hashi's and felt dreadfully ill for around 18 months. Symptoms were mostly hyper but began spiralling between hyper and hypo. Thyroid levels were euthyroid with elevated thyroid peroxidase antibodies, so I was neither hyper nor hypo. After thyroidectomy symptoms resolved so I don't think they can have been due to anything other than Hashi's.

  • omg you have been through the mill honey, how the hell did you get through 18months of all that? Was because you were dotting between the two, the reason you had your thyroid removed. If I could have mine out I would if I thought it would help. How long ago did you have it done?

  • Jefner, I didn't go to my GP until a lump appeared in my neck overnight. The lump was a large nodule inconclusive for thyCa but had to be removed because it was compressing my trachea. Turned out it was malignant so I had completion thyroidectomy 3 months later, and after that no more Hashi symptoms, thank goodness! There was no more cancer so I've been in remission 4 years.

  • Wow after 18mths of hell you must feel wonderful. Do you have to have reg checkups & do u have to take hormone meds as well? I think its disgusting the length of time we have to suffer due to so much lack of knowledge within the do-called medical profession when thyroid probs are so common these days

  • Jefner, I had a difficult time on Levothyroxine and only recovered when T3 was also prescribed. I've felt well for a couple of years now but it's not the same 'well' I had prior to thyroid dysfunction. I only require annual check ups from now on.

  • Thats brill hon. Do u have to adjust your diet? I am sick of reading conflicting reports about what i can and cant eat to help my immune system. Introduced nus and seeds to my diet (small handful a day), to get magnesium and selenium naturally. Then i read they are crap for hashi's because of this and that. Cant seem to find any concrete info anywhere, so many people with conflicting ideas

  • Omg i have messed up hun! Have my thyroxine on night stand for morning and forgot that i had routed out to use up some 50mcg from my old dose rather than throw them away. I am not sure how many i have had but forgot n thought they my 100mcg cus so blurred in the mornings. Realised for the last 3-4 have only been taking 50! Took one at 9 this morning when i stirred, went back to sleep. Woke up hr and half later, realised and took another 50. I have a weekly pill box i normally use but feeling so bad lately i couldnt be bothered to fill it properly over xmas so just reached for the 50's in my drawer to take 2 in mornings. Brain fog = forgot!!!! What should i do about my dose now? Rectify to alternate 100/125 or 125 for a few dys?

  • Jefner, I'd resume 100/125mcg. Selenium is very good for the thyroid. Magnesium is good for nerves and muscles.

  • thank you honey. Anxiety has lowered a bit now, enough for me to move around a bit, although my elderly cat is poorly today so I am worried about him :( What is a safe dosage of selenium and magnesium without going overboard if I buy supplements, especially when I supplement with nuts and seeds every day?

    Can I tell you a secret? lol

  • Hi jef your poor body doesn't know if it's coming or going, keep things steady including meds and try to keep your emotions under control..

  • keeping emotions under control is very difficult Chunky, I spend a lot of time of my own and typically start getting paranoid about stuff. I get awful nausea with anxiety and unfortunately have a severe phobia (since childhood) of vomiting so I suppose this fuels the symptoms when I feel sick. I am now post meno (confirmed by bloods) and according to my doc I am still within the "symptom" range before they start to subside. I think the onset of Christmas also started my depression off as I always feel low this time of year. I think since finding out I have Hashi's and reading up a little on it I am kinda living in fear of not knowing what to expect and there is so much to learn about it and have checked in the way of bloods.

  • I know exactly what you mean, I'm not quite menopausal but not far off.. I was having paranoid, over analysing, feeling rubbish about myself etc.. Since all this my weight has been climbing fast.. Stress and anxiety are a nightmare, hormonal just makes everything worse.. After new year I'm going to make a real effort to control my weight!! Xx

  • My thyroid levels only fluctuated (first time in 10yrs) when I reached post meno...damn hormones lol. I don't have a weight issue luckily although I did lose half a stone due to the nausea and not eating as much as I would usually do. In fact I can eat most people under the table. I always find that if I have a proper meal, for some reason I can carry on eating and some days never seem to feel satisfied after a meal to the point of still feeling hungry and off to the fridge I go again.

    It's very easy to over analyse and become paranoid because even though I have been Hypo for 10yrs now I never looked into the illness I have and pretty much knew nothing about it until it fluctuated about 3 months ago and I found this group when I decided to seek help, advice and knowledge

  • Your lucky that you don't have a weight problem too.. I just try to focus on one thing at a time.. I no longer feel anxious at all since dealing with my major work related issue.. I try to be kind to myself and to appreciate the here and now.. It is the illness that makes you feel like crap... Hormones or stress or whatever it is!! X

  • it really is time for me to stop being so hard on myself. This year has been very bad for me. I am self employed on ebay and sales have been desperate and I have been so worried about how to change things around to make them better again so I can pay my bills. Also looking after my elderly folks is stressful and then I leave them and come home to stress as my elderly cat of 20 is very needy and also my elderly bunny. I have been known to sit outside on the drive in my car just to get some peace and because I didn't want to go into my own home. Feeling trapped I suppose

  • So it's now time for yourself.. You have to look after yourself stop giving so much to everyone and everything else.. Once you have recovered, you will feel much calmer and able to deal with difficult situations.. I have a17 year old black lab that can be demanding.. I must go to bed now, speak soon.. One day at a time.. X

  • you wouldn't believe how many times I have heard that from people about cutting back on the giving BUT it's just me, I am a giver and always have been lol. You are right though, it is time to look after me a little more. Nite sweetie and thanks for the chat xx

  • Hi Jefner sorry you're feeling so ill.I'm just learning so hopefully someone more knowledgeable than I am will jump in and help you soon.however I think I'm right in saying that with hashimotos at least at first you're body jump between hypo and hyper but will eventually settle.as for gluten free I'm in my sixty and also trying gluten free I did it for 3weeks before Christmas to help my antibodies I have hashimotos too and it helped.so now I've had my celiac test I'm back on gluten free as the specialist who sent me for the test recommend it weather I'm celiac or not.hope this helps

  • Hi Pet, thanks for replying. What symptoms were you having before you went gluten free and how did you feel better. I am going to ask my Doc for a gluten test on my next visit. I would rather know if I am sensitive before I change my diet completely. How did you manage to persuade your doc to refer you to a specialist?

  • sorry Jefner I've had family here but will get back to you tonight as I have to go out now

  • NO rush honey. Enjoy xx

  • Hi again Jefner.there's so much to say really I've been trying to get the Dr to treat me for under active thyroid for years but they wouldn't Listen I've had graves so new something was wrong.I don't trust Tsh only bloods.anyway in April/ may I felt worse than usual so much so I saw several doctors one after the other who took blood looking for everything except hypothyroidism. 3 pages of blood results.Each time I got a print out of my bloods and studied them I got a lot of help of here and the thyroid site.they where great.I eventually persuaded one of the doctors to include the TPO test for Thyroid antibodies these came back raised doctors still wouldn't confirm hashimotos I argued that I was ill,and didn't know why I should be allowed to deteriorate until I could hardly function before I got help.the doctors then took the results I'd taken them and spoke to the thyroid consultants at the hospital which agreed I should start treatment.in the meantime my sister got confirmed as a celiac and as a result I had a 50% chance of being one too. I tried gluten free for 3 weeks and felt so much better no pain anywhere less brain fog no bloating or constipation.the doctors agree a test and I spent the next 9 weeks back on gluten and a return of the above symptoms and generally feeling ill again. So much so I'm back on my gluten free diet.hope this helps 😃

  • Did u find u had to push docs hard to get referred?

  • For thyroid yes but not for celiac test

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