I am considering leaving the Thyroid Uk support forum as I'm being seen as someone who just can't be bothered to look after myself and is seemingly stupid.

I have no idea about how to share my BBT data with others, which was why I have been resorting to taking pictures of my BBT graphs with my tablet.

I haven't yet closed my account down, I'm just very upset that I'm seen as what I feel like I'm being seen as.

Jo xxx

47 Replies

  • Please don't leave. Pictures are fine with me. It's also fine if you type results. W are here to help and don't expect anyone to do anything they are not fully comfortable with. I hope you stay so we can help you.

    I don't even know what bbt stands for so you're in good company ;)

    Carolyn x

  • Hi Carolyn :)

    I've been given the impression that I'm ignoring people's advice and answers. I didn't know anything about this app I can use to record my basal body temperature (BBT) and when it was pointed out to me it came across as though it was something everyone should know about.

    I'm a very sensitive person so when people talk to me and come across as though they don't like me I end up feeling very hurt. :((

    It's just that when I present info like with the Brazil nuts containing T3 (which I was led to believe) I was made out to be a bit thick because there's no T3 in them at all but I thought that was what the article said.

    I've had Hashimoto's since May and some things I've been told don't make any sense to me still. I'm just having real trouble accepting my illness and I have no one in my own social network who understands. :'(

    Jo xxx

  • I'm sorry you feel that way :( I don't think anyone intends to make you feel that way but people forget that they were once where you are now and that is a very steep learning curve and forget that you may not have got to grips with it yet, being relatively new. When I started out I definitely felt as if I was an outsider looking in purely because there was so much I didn't know. Luckily people here, for the most part, are very patient and once they realise you are new to something they are more patient.

    Please do keep asking questions. It's the best way to learn. If anyone is out of order, let us know and we will call with it :)

    Take care and let us know how we can help. You are very early on in your journey so there's probably a lot that doesn't make much sense yet but I'm sure it will do soon :)

    Carolyn x

  • Hi Carolyn thanks for getting back to me.

    I don't think I have got to grips with it yet - there are so many things on my mind.

    Firstly I've spent a lot of my time and energy with my former GP as the first thyroid function test they did on me was high and they did not put me on any treatment. They did however refer me for an ultrasound on the thyroid and repeat the thyroid function test. The hospital carrying out my ultrasound did not write in my scan report to my GP that the gland was bulky on one side and the thyroid function test came back within range. So that was the end of that and the GP would not do any more thyroid function tests anymore. I left that practice.

    So I've gone to a much smaller practice and they agreed to retest my thyroid function and test me for antibodies which were elevated. TSH was fine so they didn't test my FT4. My TSH has been high since then but I've been sticking with the same GP now as 2 others at the practice have not accepted the high antibody titre I have.

    I'm in a lot of shock with this condition still and I've found it very hard to understand everything - I still do find it hard especially with the more technical side to things.

    Also because I'm hypothyroid I still have this idea that I'm supposed to be overweight with a puffy face, puffy hands and feet and thinning hair. I have none of that and although I've been tested negative for diabetes and coeliac I've found it hard to deal with the "hypothyroid" label. People who know me look at me and say, "well you look ok" and so I'm made to think that I am ok. I don't mean to brag to anyone on here but I still weigh 7 stone and 10 pounds. That is how light I am. I get stopped by men on the street asking me if they can have my number - they're young enough to be my kids and I'm nearly 30! It makes me sick to know I still look so good with an illness that makes me feel so awful. :((

    I also left my job with this illness and I bumped into my old boss in the street. It was intentional as I knew she would be out on her lunch break and I felt very good about myself as the dose I was on worked for a bit. She suggested we go out for lunch together - this was someone who used to have a real problem with me! I'm not going to go to lunch with someone who made me leave my job.

    I also seem to be deficient in a lot of things - I've been told by my GP I'm deficient in Vitamin D, low on Vitamin B12, ferritin and folate but I've been told that I may be deficient in zinc, selenium and magnesium! So now I have to maybe consider taking supplements for these as well as continuing with my T4, iron and Vitamin D!

    I haven't got a clue how to manage all of this and I don't even know how I'm still alive with all these deficiencies going on!

    I'm feeling really overwhelmed and I don't know how to make myself better with all of this going on! I've even considered stopping my meds as everyone I know says I look fine and why would I need to take them. It's made me think that they're right. :(


    Jo xxx

  • I replied to your post about Brazil nuts saying they contain selenium not T3. It wasn't intended to make you feel thick.

    Sometimes the written word comes across terse or a bit brusque when the poster doesn't intend any such sentiment. Other times the respondent feels ill, tired and anxious and may come across as impatient. Don't take these things to heart. This is a support forum and posters come here to help not hurt.

    I didn't know what BBT was until you explained either.

  • Thanks Clutter. I'm trying to understand my illness and because I've been told I had it for just over 7 months it makes me think I should know everything about it.

    Jo xxx

  • Gosh I didn't know there was an app for temperature. Should like to know more about that-will search! I've got one that records weight daily The basic one was free but think I paid a little extra for the extras! It plots your actual weight and also a line that is corrected for bodily waste so you can actually go a little above that but not feel as though you have sinned! I'm not particularly weight conscious but its handy to have something you can input your data easy isn't it-thank you for sharing, most helpful

  • Wow! I like the sound of your app Silverfox!! Did you get this one on your tablet? Would love to know more!


    Jo xxx

  • Got an iPhone so Apple Store-weight Diary. Just got another one that records multi health things-some blood results, temp, weight. Sugar and a few more. Just states yesterday recording weight. Want to do waking on and night time then will a average but I want to keep readings apart and not sure if it will let me do that. Small charge for this and you can ask questions so emailed what I should like to do, is that possible and if so what settings. Space for BP as well well Systolic/diastolic/HR

  • ....everyones posts are valuable - thank you for explaining BBT - I have learnt something new !

  • Hi,

    Please don't leave. I was in the middle of replying to your earlier post when I noticed your question had disappeared.

    I gather that you are concerned about your BBT getting lower since Christmas. There can be many reasons for this - you do not need to send us your graph. Some reasons can be the time of day you took the reading, your age, the kind of thermometer you used, how active you are, the outside temperature etc. etc. - the list is long. In my experience the BBT is NOT a good indicator of thyroid health. I know of many, many people whose health is excellent, but their BBT is much lower than yours.

    Much better indicators are your high TSH and more importantly how you feel. If you still have symptoms then you still need some help.

    Do you still have symptoms? Don't pay too much attention to your BBT as that can be a distraction from the real issue here which is how you feel.

    Jane x

  • Hi Janeb

    Sorry, I removed the question because I was told something about the Dropbox app which I knew nothing about (despite owning a tablet for a whole year which has the Dropbox app on it!) I was told about it and given a link which I was grateful for but I was given the option to go ahead and download it (which I did and have started to use) or ignore the link.

    Yes, I do have many symptoms and I have a high TSH but my FT4 is within range.


    Jo xxx

  • Learning about thyroid problems can be very daunting, even more so when your brain is not functioning well. I've been learning for 12 years and I still have LOTS to learn.

    What symptoms do you still have?

    Have you had your levels of B12, D3, Folates, Ferritin and magnesium checked?

    Have you had any adrenal tests done?

    Have you or your doctor considered changing your medication to NDT, or liquid thyroxine or straight T3?

    Many, many things can influence how well thyroid hormones work in your body. We have only recently learned this year that my daughter's thyroid health has been compromised by other influences.

    I'm sure you have options still left to try so please let us know about the above. Jane x

  • Hi Jane

    My symptoms are:


    Low basal body temperature even when I'm sweating/feeling warm

    Feeling cold


    Body aches/pains


    Forgetfulness/brain fog

    Mood swings



    Heavy periods

    Early periods

    Short periods

    Short cycles (they start every 21-22 days)

    Recent blood tests that have been done are as follows:

    TSH - 4.6 (0.27-4.2)

    FT4 - 15.6 (12-22)

    Anti-TPO antibodies - 41,000 (<34)

    Folates - 4.1 (4.6-18.7)

    Ferritin - 21 (30-400) - this was previously 15 so has gone up.

    B12 - 363 (180-900)

    Vitamin D - 43.6 (>75)

    I've been started on Vitamin D supplements and take Spatone for iron levels.

    I've not been checked for magnesium - not sure if this a standard test done by an NHS GP.

    I haven't had my adrenals tested as I don't think my NHS GP believes in any of that despite accepting I have an autoimmune illness. I do see an endo in just under 2 months' time so hopefully I might have more luck with her.

    GP has not considered moving me onto NDT, liquid thyroxine or straight T3 as they don't think T3 meds will help me. Plus my FT3 is within range - I've heard that this can be mistaken for Reverse T3 or vice versa, I'm not sure.


    Jo xxx

  • p.s. One more thing - have you been on the main Thyroid UK website? There's lots of information on it which might help to fill in some gaps for you. DON'T try to absorb it all at once though.

    Sorry, that sounds patronising - it's not meant to. I just know how my daughter and I struggled to make sense of everything at one time.

    Jane x x

  • Hi, yes I've been on the main ThyroidUK site but it's good that you've given me the link as I may well access it again so thank you Jane. :)

    Jo xxx

  • Yes it is very daunting. My late husband was an endocrinology lecturer when I was diagnosed-he said years earlier I had a problem but the results were 'normal' but he did tell me and the GP that testing only TSH was a waste of time. Over the years I've eventually realised you can't rush anything. One thing at a time is the best way and patience is very important but difficult to subscribe to when you feel so bad. Make a list of what you think you should try and try to prioritise if you can but if something gives improvement then tick it and stay with it then continue with something else. If you feel worse on that then stop only that, continue with your ticked ones. Even the things that made you step back might be worth trying again at a later date when other things have been added to your tick list. Its a very slow journey for most but also remember that what works for one may not help you. Its a huge learning curve but stick with it, ask questions and be open minded about suggestions as that might be your key to better health. You are amongst friends here and we have all had to learn about not only the thyroid but how our body responds to various treatments. Sometimes though its difficult to reply on a forum and often by trying not to be long winded-I've given up on that-it sometimes comes across as curt or patronising when I don't imagine that is always the case. I've always said never be embarrassed to ask a question thinking it is stupid. The whole point of a forum is to ask questions and gather replies from those of us who have experienced that but also to be aware that with thyroid its not one size fits all. Keep posting and learning, it does pay off!

  • Thanks Silverfox!! :)

    Jo xxx

  • jo if you have a high tsh then you are hypothyroid the problem is finding a doctor with enough brains to treat you i know exactly how difficult it is when you have no one to fight for you

    and the brain fog of hypothyroid makes it difficult for you to understand thyroid problems

    but all of us will try to help you

  • Thanks reallyfedup. It's just that when things get technical I have trouble understanding. :(

    Jo xxx

  • Then i will try much harder to explain in ways you can understand

  • I can't seem to access Dropbox on this poxy tablet that I've had for almost a year. Didn't know I need to dowload an app.

  • I feel pretty silly because my boyfriend and I are both technically minded and have had our tablets for over a year - I noticed the Dropbox app but I've never known what it was for.

    Jo xxx

  • Hey you, a lots gets lots on line in the written word... give it one more go.... but don't ask me as I have a brain the size of a pea and it is not turned on today. Love from Mary FUSS x

  • Thanks Mary :)

    Jo xxx

  • Thats ok!

    MaryF x

  • Hahaha!! Love it! That's cheered me up. :) Cheers Mary for that! :D

    Jo xxx

  • x MaryF

  • Hi, Sorry you are feeling the way you do....when i first joined i read posts and really did not understand what people where talking about and sometimes still dont, is better than anyone else and information where ever you get it from is not an absolute as we know...its usually that persons opinion sometimes with research and sometimes with not.... take what you need from it.

    Hope things improve with you.

  • Thanks Yorkshiregirl44. :) I really want to stay on this site as I feel like I've made lots of friends on here but I get so depressed when I'm being seen on here as being stupid or thick. I hope I'm none of those things.

    Jo xxx

  • Awwwwh sorry you feel that way...I am 4 years into being unwell and at times I think I have a good grasp of what is going on and at other times I feel I have no clue about this awful illness. On the whole this site has been useful to me and the people on here are helpful for the most part, we are ALL different but the one thing we have in common is our poor health with the aim of trying to get better...D x

  • Thanks missdove.

    I've only been told I have this since May last year and I'm in shock with it as I'm supposed to have thinning hair, puffy face, hands and feet and be overweight. I don't have any of that so I don't know what to think of myself. :(

    Jo xxx

  • I never put any weight on either...not once. My hands and feet dont swell either, i did loose hair on my arms and legs but not on my head.

    Been on meds for three years with many problems. went to see Dr. Peatfield who diagnosed adrenal problems.

  • That's funny - I haven't lost any of my hair. My arms have always been quite hairy and still are (not that I was a man in a previous life!) but as for my legs...well, I haven't shaved them for months (only because of the cold weather and I practically live in leggings and jeans!) and they're still hairy. Scalp has a tendency to get sensitive when I brush it but that's it really. Plus I have really flyaway hair - again something I've always had to live with.


    Jo xxx

  • Jo. Is it possible you have poly cystic ovary disease because that can cause a lot of hairy body in women and may explain why you have not got diagnosed

  • Poly cystic ovaries? No it hasn't been suggested I have it but I think my mum had it some time ago. She never got treated however.

    Also I had an abdominal ultrasound when ovary/womb problems were thought of back a couple of years and they found nothing unusual.


    Jo xxx

  • Hi Jo,

    Please don't leave, we all want you to stay :-) I know how you feel about not looking unwell. I have in fact lost weight over the last few years of being hypothyroid and am a size 12 so I am by no means overweight. I go through periods of losing my appetite which I think causes this. I do not have a puffy face or hands or feet either However I know just how awful this disease can make you feel and it's not pleasant. We're all different and all have a different mix of symptoms but that does not mean that you are any less unwell because your symptoms are invisible to someone else. What matters is how you feel and I know everyone on here can relate to that.

    When I told someone at work that I had switched to part time because I was unwell they looked at me in surprise and said "oh really? You don't look sick" and I just said "yeh I know" - didn't know what else to say really. It does make you feel horrible when people say things like that, as if you're making it up when you know that you feel like death. But what's so great about this forum is that there will be people here who are going through the same/similar things to you and I find it makes me feel just that little bit less alone with all this :-)

    Hang in there my love :-) take care xx

  • Hi DiamondFire, thanks for your reply. I've since decided to stay. I see you've replied to my latest post. :)

    Yes, I can empathise when others say you don't look poorly when you feel bad inside. I was stopped by a man asking me for my number and he asked me where I was going. I said, "well, I'm on my way to my GP appointment as I haven't been very well." He replied, "well, you're very pretty and you look fine to me."

    It makes me feel like I'm living a lie with this illness so thank you for your kind words. Much appreciated. :) Take care too!!

    Jo xxx

  • When you tell someone you're ill and they respond "You don't look ill to me" the appropriate response is "You don't look stupid to me".

  • Love that comment Clutter!! Jo xxx

  • That's horrible Jo, this site is supposed to be a SUPPORT site. If people are making you upset, STOP IT NOW. I myself have no idea what all these figures mean that are being tested, but the person to ask is your doctor/specialist. I know they always say "it's normal or slightly low etc" but ask him/her what is "normal" is and get the figures. Take the questions you want to ask with you when you next visit. I think this is going into too much detail anyway with all the figures etc, everyone can be very anal with looking at their own condition and figures, sometimes not even answering the question you yourself have asked but talking about themselves instead!! You know it's true out there....I've read them!

  • Hi Ginger, thanks for your reply. I've since decided to stay! I don't want to leave as I feel like everyone (or near enough everyone) is my friend. :)

    I've been referred to an endo and I don't see them until March. I have since written an email to them but I haven't heard back - this was even to the receptionist to the endo who I'm seeing which is confusing!! I even addressed the email to the secretary!! :o

    Jo xxx

  • I have just read through all of the postings and I'm really pleased that you have decided to stay.

    I'm sure no one on this site would be intentionally nasty towards you Jo. We are all struggling and learning to cope with this roller-coaster illness and can help one another as some are much more knowledgeable than others.

    I still have to get my head around medication and blood results after nearly three years of being diagnosed as overactive thyroid and on my many brain-fog days I even wonder what day it is!!!

    This site is a Godsend, and I'm happy that you are going to stay and share your thoughts and time with us all. Keep your chin up Jo. Listen to you body and be kind to yourself today. xxxx

  • Thanks Glo42. :) I never want to leave this site at all - I think it's because I just try and be nice to everyone and am very sensitive.

    I've had this since May last year and I feel as though I should know *everything* about my illness, so when I get proved wrong on here it makes me feel a bit silly. :(

    Jo xxx

  • Jo, you are not silly at all. You are sensitive and if that is your nature then there is nothing wrong with that. I do believe that this illness that we share makes us all very vulnerable and I do have a few weepy days when I think people have been unkind but it is the way of the world Jo.

    You come across as a lovely person so keep battling on and hopefully your Endo appointment will be a good experience so that you can be more accepting of the good and bad days that a thyroid condition brings to us all.

    I personally think it's good to know that we are not on our own and I hope it helps a little to know that others struggle daily too. Just read other postings to find this is true.

    Keep your chin up and I hope you have a good day today..... tomorrow will take care of itself!! Sending gentle hugs to you right now. xx

  • Aww, thanks Glo42. :)

    I've gotten somewhere today already so I feel much better.

    Sending hugs back!! :)

    Jo xxx

  • Ginger ...sadly doctors saying its normal is very often anything but which is why forums like this exist to help each other get answers

    if i had not pushed to find info my husband would be dead from untreated hypothyroid

    now i am fighting the same battle with my 18yr old grandaughter

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