Lost

I deleted my last post as I didn't feel I was explaining myself very clearly so apologies in advance for that.

I can easily say that yes, I have been worrying about things and why shouldn't I be? I'm not getting answers from my GP or my Endo and what had come back from the urgent care centre was on my mind.

But I didn't think I had been self-diagnosing. Worrying, yes, but not the former. I haven't said, "yes, I have this" or "yes, I have that." If you were told by a doctor there was a lump in your neck you would be worried too, right?

I know there has been speculation on here that people with Hashi's (for the majority so I've read) have a goitre. To further emphasize my point that I am not a hypochondriac or a fake with a fluctuating TSH and Anti-TPO antibodies I had a goitre 2 years ago and it was a diffuse one - as in my whole neck swelled! Why it went down is beyond me but I do still have one, albeit much smaller. So the feeling of being a fake or hypochondriac is all the more since the goitre has gone down!

In time the goitre may come back - but it hasn't. I don't know why. And yes, it was a diffuse one, which I know means Hashi's. I thought since my TSH has been going up and down more times than a yo-yo it would come back. Again, not self-diagnosing, as my Endo has told me I have Hashi's. That's been established.

It's just so hard explaining to people over and over that I had a goitre and I cannot prove that as easily now since it has reduced. I probably sound like I'm lying about my illness but ask my boyfriend the same question - he will quite easily say, with no hesitation, that my neck was diffusely swollen.

So for now I've just carried on the way I have been - writing, playing games, watching TV, sleeping, washing up, doing housework, going out, seeing my grandparents, drawing - things that do not involve my health. And on top of that I've now reached 8 stone! Yay! No more 7 stone something!! How long have I been wanting to do that? :D That was the only other good news I've had this week and I was sure it was something I truly earned.

My self-confidence, however slight that was due to my weight increase, was notably knocked down again by me being suggested that I have no Hashi's with no goitre - but I have been trying to prove I do still have a goitre with the photos I posted recently.

I still feel lousy, sure, but I get through each day in the same way because that's all I can do for now.

GPs have no answers for me. Endo has sent me a letter today to say she has moved my appointment to May from April and refuses to transfer me to a better hospital. Great.

I don't want to stop posting on here, I really don't, but if people are going to question my illness then I will stop.

Jo xxx

15 Replies

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  • (((((((((((Jo)))))))))))))))). I'm sure no-one on here would question your illness. We all know only too well just what it's like to feel totally *&(^% only for the doctor to tell you that they can't (or won't) find anything wrong.

    Also, we all know just how awful it is when friends/family doubt how bad we are feeling because they can't immediately see it. I do, apparently, have the decency to look really ill when I feel really ill, but that doesn't seem to matter to doctors.

    I've given up on doctors and taken my treatment into my own hands with help from Dr P. I just inform my GP of what I'm doing so that he is kept in the loop. He is passively supportive, for which I'm grateful.

    Are you taking anything for your symptoms?

  • Hi Rosetrees, thanks for your reply.

    I have since come back.

    All blood tests and medications I take are below.

    Nov 2011

    TSH - 5.2 (0.27-4.2)

    FT4 - 16.8 (12-22)

    No medication

    Jan 2012

    TSH - 2.2 (0.27-4.2)

    FT4 not done as TSH normal

    Jan 2013

    Anti-TPO - 84,000 (<34)

    TSH - 0.69 (0.27-4.2)

    FT4 not done as TSH normal

    May 2013

    TSH - 22 (0.27-4.2)

    FT4 - 10.9 (12-22)

    Thyroxine started at 25mcg, 50mcg and 75mcg

    Aug 2013

    TSH - 4 (0.27-4.2)

    FT4 not done as TSH normal

    Ferritin - 15 (30-400)

    Thyroxine increased at 125mcg - not sure why as GP said TSH normal???

    Ferrous Fumerate at 210mcg for iron but I switched to Spatone

    Nov 2013

    TSH - 4.3 (0.27-4.2)

    FT4 - 15.3 (12-22)

    Thyroxine increased at 150mcg

    FT3 - 5.5 (3.1-6.8) - I think. Done privately

    Dec 2013

    Anti-TPO - 41,000 (<34)

    TSH - 4.6 (0.27-4.2)

    FT4 - 15.6 (12-22)

    Thyroxine not increased - stopped taking them.

    Vitamin D - 43.6 (>75) Was on Fultium D3 at 800IU but even though my GP requested I stop them due to my levels in their words not being horrendous I have continued to take the Better You D: Lux Spray at 3000IU.

    Ferritin - 22 (30-400) Still haven't upped my Spatone as I have been getting adverse reactions to moving it up to 2 doses from 1 per day.

    Vitamin B12 - 363 (180-900) My GP said my B12 looked fine but I was recommended by my lifestyle therapist to take B12 supplements. Not sure if I should be doing this???

    Jan 2014

    TSH - 2.7 (0.27-4.2)

    FT4 not done as TSH normal

    Hep2 - Anti-Nuclear Antibodies - Positive (speckled)

    Short Synacthen test

    Basal cortisol - 645 nmol/L

    30 minute cortisol - 915 nmol/L

    60 minute cortisol - 985 nmol/L

    Feb 2014 - still awaiting results for this. Endo left me a message on Friday to discuss them but I have not heard back since - not even sure if she will post the results to me since she sent me a copy of the Short Synacthen Test after the results for that came back. So I don't know what to do about these results - whether I'll hear back about them or have to go through my GP I'm not sure. I do not need to see my GP again until my sick note runs out and that's due to run out on the 27th Feb.

    So just to recap on the medications as I may have confused them with the blood results:

    Iron/Ferritin - Spatone. 1 sachet per day but attempting to take 2 per day. I am slowly moving it up to 2 but I have since had adverse reactions with it at 2 doses.

    Vitamin D - Better You D: Lux Spray 3000IU. My GP did put me on Fultium 800IU but my lifestyle therapist didn't feel this was enough. The GP then did a u-turn and asked me to stop taking the Fultium anyway since my Vitamin D levels were not horrendously low. I think, personally, it is low - it's out of range! They have told me to stop taking the Fultium - so because they do not know of the spray or have said for me to stop taking it I have continued to take it.

    Vitamin B12 - Jarrow Lozenges (I think) at 1000mcg. (I think as well!) GP has said my Vitamin B12 levels are fine but my lifestyle therapist suggests I take them. Not sure if I should be taking them at all if my B12 is fine at 363.

    Thyroid medication - Levothyroxine at 150mcg. I was a bit confused and annoyed by my GP not increasing my medication when my TSH rose back in December so I have stopped taking my medication for the thyroid. The TSH went down by itself anyway and I have since heard from someone that because I'm slim I cannot afford to have my thyroid medication moved up again. I take it that means I could have outstanding adrenal issues or could run the risk of becoming hyperthyroid??

    I was due to do my adrenal function with the home test kit I have sent for, however I will be short of money due to me paying out my car tax disc and the DWP stopping my Jobseeker's Allowance. Long story - their systems were down when I came to sign-on so I had to sign my declaration manually. Unfortunately they did not update their systems when they came back online and so they stopped my claim because they thought I did not attend. I have since applied for ATOS/ESA as I have been signed off sick but my boyfriend isn't sure I will get anything from ATOS as I am not disabled.

    So yes, very stuck right now - again.

    Thanks

    Jo xxx

  • With high antibodies, has your doctor told you that you might auto-immune problems, which I think can cause Hashimotos. (Just read your answers below, and I see you do have Hashis). I don't have antibodies, but I know from another group that two things people try if they auto-immune conditions are a) the auto-immune paleo diet and b) Low Dose Naltrexone.

    Just google them and you'll find loads of info.

  • Hi Jo so sorry you must feel like you are bamging your head against a brick wall and I know that feeling well.I am one of those people who can look really well and feel dreadful so I have been called a hypochondriac even behind , y back by so called friends. Now I tell them nothing at all and keep it gor my real friends to know.I am sorry ig you have been made to feel that way.Medically I am not very infomed but I hope you find solutions soon and I believe you....kim

  • Hi Kim, thanks for your comment.

    Yes, I feel really stuck as so many things are going wrong again.

    Endo has moved my appointment back even more and called me about the blood test results on Friday but has not chased me. I have tried to chase her but she has not replied. How I'm getting these results I really don't know, and I don't even know if my medication will be moved up...

    I have applied for ATOS since I have been signed off sick for a while but my boyfriend doesn't think I am entitled to any money since ATOS deal with disabled claimants and I am pretty much capable of most things. Also JSA people stopped my money as their systems did not update my sign-on when they were down. So that didn't help.

    I won't say names but I was explaining about having Hashi's in one of my posts/questions and someone put that to have Hashi's meant I had to have a goitre and I did have a goitre going back a few years. It has since shrunk. It might have been my mistake as I didn't mention of this goitre I had 2 years ago but I thought I'd created enough posts for them to see the visual evidence for themselves.

    My stepdad called me a hypochondriac behind my back but this was going back years and happened when I had problems with my hip. I was eventually operated on and found to have severe hip tendinitis. The consultant I saw post-op said I was lucky to have it operated on when I did as it could have advanced to a cartilage tear!

    A year ago my stepdad and mum then said I had anorexia/bulimia as I wasn't eating very much but that was because my Anti-TPO was sky-high and might have had something to do with it. It is upsetting isn't it.

    Jo xxx

  • Have Hashimotos - never had a goitre !

    M x

  • Hi Marz, thanks for your reply.

    My Endo has said I have Hashimoto's due to elevated Anti-TPO antibodies - didn't think to look at my neck but then again maybe she didn't have to. Still don't know why she didn't though. :/

    Jo xxx

  • Same here! Susan

  • Hi Susan, thanks for your reply.

    I feel a bit better since restarting my Levo and starting over.

    I hope you find the answers you're looking for soon. :)

    Jo xxx

  • Jo, I don't think anyone on here would doubt or query that you have a thyroid condition. Some, myself included, have just been trying to point out that focusing solely on our ailments/illness to the exclusion of other things in life,can make us feel a lot worse,because we are constantly dwelling on it.As you yourself said in your other post, you have recently been including doing other things for a few days and found that it does take your mind of thyroid connected stuff for a while.You said you were not working at moment due to the condition and that is understandable but also with more time on our hands to sit and think/google/worry etc it can make it harder to move out of that vicious circle.Doing all the other stuff you've been doing lately helps to take the mind off it and that can help a lot.Its hard when one doesn't feel so good to be motivated for anything but by focusing solely on our ills we can think ourselves sicker than we are! This isn't meant to be a personal slight on you Jo, I am as guilty of doing it as anyone,I think most of us on here are at times. Big hugx

  • Hi cupi, thanks for your comment. Hugs back to you too!! :)

    Yes, when I had hip problems going back a few years I was googling everything in the letter my osteopath had sent to my GP about my case. Top results were Sacroiliac Joint Dysfunction. Pretty technical, eh? :D A year or so later I'm told by an orthopaedics consultant that I had a snapping hip and the option of surgery came up due to my long history of hip pain and snapping. I had the operation done months after and the consultant I saw said it was lucky it was operated on as the tendon had mostly frayed away to nothing. So all the googling I did came to nothing and it was something completely different!

    I have not googled anything since this post about my symptoms and I'm now just waiting on the blood test results and letter for the ultrasound scan.

    Jo xxx

  • You poor thing,it's not easy dealing with all of this health stuff is it? I know it's easier said than done but you are not giving yourself enough credit,you are trying hard to keep busy and trust me that is the best thing to be doing right now. It's unfortunately a big patience game. If you are convinced you have a goitre and it would make you feel better having a scan then maybe it would be money well spent to have a private scan. Talk to your partner and make him understand how anxious and worried you are.

    I do also have to say that I haven't seen anyone on here question your illness,everyone has been nothing but supportive,so I don't understand why you would stop posting.

  • Hi chihiro, thanks for your reply.

    I saw my GP last week and they have ordered an ultrasound scan which I have heard nothing back about as of yet. My GP said to me at the time that she would call me if it's a scan I can just drop-in for but she didn't call about it so I presume I am now waiting on a letter.

    Partner is more understanding but doesn't think I will get a strong claim from ATOS as they deal with people who have bigger problems than I do.

    Someone was kind of inferring I did not have Hashi's by saying that if I have no goitre then it does not make it Hashi's. But I have raised Anti-TPO antibodies and my Endo has said it is Hashi's. Because of the number of run-ins I have had with my GPs and doctors I've found it hard to trust them.

    Jo xxx

  • Jo,

    Your elevated anti-bodies mean you were diagnosed with Hashi's. A goiter isn't a pre-requisite. You had one and it has reduced. Possibly because of the levothyroxine, possibly because the lymphocyte attack on your thyroid has ceased for a while.

    'Other people', unless they are medically trained, familiar with Hashimoto's AND have your blood results in front of them, are merely expressing uninformed opinions. Tell 'em to eff off! You don't need their disbelief or negativity.

    You don't have to 'prove' your illness to anybody, ever. If they won't accept what you've told them and won't support you without question, they aren't worthy of your friendship and will simply destroy what is left of your self confidence.

    I suspect the person having the most difficulty accepting your illness/condition is you. You've had the tests, done your research and now you need to accept. That isn't to give in, but find a way of living well with a fluctuating condition.

  • Jo,do you work? if not have you tried volunteering? We are all in the same boat on here,we all have a battle to fight. I know you are worried about your health and people here are only too willing to help you. From a mental health point of view I feel you need to get out and mix with other people of your own age. Have a day off from worrying,your problems won't go away but you will be able to tackle them afresh. xx

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