Thyroxine gone haywire 9Vent and advice needed)

Hiya , Just looking to vent really, I've had an underactive thyroid since birth (I'm 34) and always been on a steady dose of Levo ...but in the past year and a half I have no idea why but my results have been massively fluctuating..I went from 150msg to 175 then rose to 200mcg...(When on 175 I was going dizzy, nearly fainted heart palps to where I though my heart was going to stop! (not to be dramatic :D) ) The doctor after blood tests insisted I was too low so wanted to put me to 200mcg which I contested with as I told him that I was having signs of going hyper as opposed to hypo ) , he still insisted on increasing the dosage though so thought 'ok I'll play your game' but in turn insisted on being referred to an endicronologist...meanwhile I went on holiday taking the 200mcg...which was horrendous ...I was sleeping a lot of the time, lethargic, brain 'numb' so to speak, heart palpitations, anxiety...this was throughout the day (I was taking tablets in the morning) , but by night-time I was feeling slightly more on a level (could it be that it was easing off before my next dose in the morning?) ..Anyway got back.. endocrinologist phoned and said the dosage was too high (shock!) and to go back to 175mcg immediately which I did and felt fine...until a couple of weeks ago...I've started getting the heart palps, lethargic, sleeping lots, paranoia again ...I tested myself by not taking my Thyroxine yesterday and felt fine, great in fact so phoned docs and requested bloods. He said that I had had them done in Jan to which I adv that regardless i've been having symptoms and want them doing (a blood form is waiting for me to collect) the only thing is I will have to take the levo continuously for a few days to get a true result.. :( ....Have take levo this morning and i', feeling lethargic, like I want to fall asleep and slight palps...surely this is not good for me..?? Because I had a test done Jan and app that was fine would it be too out there that in the past couple of weeks it has change given my symptoms? This is really started to affect me now and tbh getting upset as I type because I just want to feel normal again ... :(

14 Replies

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  • Apologies for the spelling mistakes ..^ .was trying to type quickly!!! :-/

  • amie0507 Post any test results you have, including the reference ranges, for members to comment. If you don't have them, ask your surgery for a print out, you are legally entitled to them under the Data Protection Act 1998.

    Have you had thyroid antibodies tested - Thyroid Peroxidase (TPO)?

  • Hiya , Thanks for replying, I haven't got any of them to hand but I have a doctors appointment tomorrow morning to request referral again to Endo so will ask for them then. In all honesty because its just been something that I have had forever and always been stable have just fully put my trust in doctors and never looked that much into symptoms, consquences or tried to understand levels etc...It's sounds so naïve but I just saw it as 'take these 2 tablets and that will keep you better' ..it was only the first time when I was getting extreme symptoms for 6 months that I associated them with my thyroxine (I was low that time) ...and it hasn't stopped fluctuating since... :(

  • If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

    Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's, by far the most common cause in UK of being hypo. (90%)

    TPO is rarely checked and TG almost never checked. More common to have high TPO or high TPO and high TG, but negative TPO and raised TG is possible, though much rarer.

    ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records.

    You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D.

    Poor absorption or uptake of thyroxine can be due to low stomach acid, leaky gut or gluten and/or dairy intolerance, especially with autoimmune Hashimoto's (high antibodies).

    You do not necessarily need to be suffering from obvious gut issues such as acid reflux, bloating, IBS; you can still have significant invisible gluten intolerance.

  • Hiya

    Thanks for the response, I believe when I went to see the Endo the first time he checked all of the vitamin levels as , as well as lowering my levo he prescribed me Fultium capsules which I also take daily (Also personally take Vit C)

    I'm not too sure about the antibody check but I was diagnosed as a baby so have always been hypo, I'm going to get the bloods form tonight so will enquire about getting my records online which is much easier for me, if not I'll request copies for me to be ready for my appointment tomorrow.

    It's strange that you have mentioned the gut as I constantly get a bloated stomach after bread/pasta etc which I put down to a mild carb intolerance , I've never thought to associate the 2 ...

    The most worrying thing for me atm is the lethargy 'brain fog' and heart palps , I would happily have a bloated stomach if I just felt normal , it's just getting me down and im sick of people dismissing it when I talk about it as if to say 'well you look fine so stop complaining' ...it's also affecting my social life and new relationship as I tend to want to hide away until it's all sorted and I also don't want my partner to think im just a 'moaner' as when we met I was the life and soul and now have no energy, want to sleep 60% of the day and get quote irritable :o...

  • Amie0507,

    Ask whether tissue transglutaminase (ttg) can be added to your blood order to test for coeliac disease (intolerance to gluten). It's a pretty unreliable test giving up to 50% false positives or false negatives. Some people have non-coeliac sensitivity to gluten so it might be worth going gluten-free for a few weeks after the blood test to see whether your bloating and other symptoms improve and what happens when you reintroduce gluten.

    Were you born with a thyroid gland? If not, I don't think it's possible to develop antibodies to thyroid peroxidase or thyroglobulin (Hashimoto's).

  • Hi, i think Coeliac was tested for and came back negative although i did think it was strange, ill definitely try gluten free to see if that makes any difference it terms of my weight/bloatiness at times...

    I was born with it yep so i think its definitely hypo or hyper (im thinking more hyper)... :-/

  • Amie0507,

    You can't be hyper but you might be over medicated. Results will tell :)

  • Thanks, just eager to get them done now and hooefully prove im nit losing the plot...

  • Levels often get upset at certain times in our life e.g. Puberty, Pregnancy, menopause when other hormones are changing

    Read more about gut & gluten at

    chriskresser.com/the-gluten...

    thyroidpharmacist.com

    chriskresser.com/the-thyroi...

    Also thyroxine must be taken on an empty stomach and then nothing apart from water for at least an hour after. (No coffee or tea) Many take on waking, but can be more convenient and recent research, suggests perhaps is more effective taken at bedtime. (Must be at least two hours after eating)

    But if you suspect you are over treated, don't change, as taking at bedtime can be equivalent to small dose increase.

    naturalendocrinesolutions.c...

    scdlifestyle.com/2014/08/th...

  • For me none of the above apply..it just seems to have randomly come on (symptoms...oh and ive also had a ringing in my ears but thought I had developed tinnitus until i read that that could also be a symptom..?)

    Yeah i have been taking them as soon as i wake up and then leaving it an hour as per doc but at about 10am is when i start to feel woozy etc and that generally lasts all day until about 6 when it starts to ease off...

    I read about taking them at night which im definitely going to try after i get my next set of bloods...im thinking that if i take them at night then im sleeping the worst of the lethargy away..? Supposed anything is worth a go..

  • Tinnitus can be associated with low B12. Also common to be low B12 with low thyroid.

    Get B12 and folate levels checked. Range of B12 is considered by many to be too wide, (range usually 200-900 approx) But especially if taking thyroxine, we seem to need level above 500 and many find it better to be at top end of range.

    Low B12 can be due to low stomach acid (common when hypo) or can be another autoimmune disease - Pernicious Anaemia

    When we have low B12, folate, ferritin and/or vitamin D we struggle to absorb/uptake and use thyroxine.

  • Been to docs and on way to get bloods taken, hes testing my levels plus B12,CAPR, LFT and VITDN3...

  • Doctors (receptionist) has inforomed me that my blood results are in the 'normal' range, i asked for a printout and was told i would be charged £10 so asked for an appointment and told that doctor only available on Thursday and Friday and to ring at 8am for an appointment....why do they make things so difficult!! 😣

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