Is this my life from now on?

Hi guys, feeling really down at the moment and needing some advice. I was diagnosed as hypo last August (not knowing it was hereditary as mum is hypo) and from lots of reading have found links to various symptoms I have been suffering over the years, including thinking I had Postpartum Depression 6 years ago, but now think it is possible that it was pregnancy that brought on the hypothyroidism. The brain fog and tiredness is immense, my periods have worsened, my moods are like a rollercoaster and I keep getting swollen lymph under armpits and groin during my periods, I ache so much and the list goes on.

After feeling sick as a dog when I first started taking levothyroxine (I now take at night and don’t feel sick with them now) I’m now feeling even worse than when first diagnosed. I have never felt so low, I’m tearful about the strangest things or nothing and I could write a list over an A4 page of the range of niggly (and not so niggly) things that are happening to my body. Anyway, friends and family convinced me to actually write this list and take it to the GP prior to my next routine blood test. I burst into tears at the GP (not like me AT ALL) he widened the range of tests and said we’ll do nothing until the results come back. When getting the bloods done I saw on the screen he had written “long list of symptoms, mostly related to stress”.

My results came in today and my GP has left me confused. My T4 is 9.0 and TSH is 16.89. He said at the appointment that the results look like I might need to increase my meds but is more concerned about the range of symptoms I shared last time (most of which could be related to hypothyroidism – and of course many other conditions). The upshot is, he is convinced I am stressed and has told me to continue with the same dose of 25 levo and has referred me to a councillor/therapist to uncover what is causing my stress! I am so angry. I sat there in disbelief. Whilst I am pleased he is not taking the results alone as an indicator of anything, what on earth does he think will be solved? He tried to explain how symptom I has was stress related, even knee pain I have had since I was 15 and have long since given up on getting a GP to take seriously. I tried to make an appointment and they told me there aren’t any for at least two months, keep phoning once a week to see if any become available. What am I supposed to do in the meantime? I quit my position as head of department and have gone down to 4 days a week in the last two tears, if anything this is the least stressed I’ve felt in a long time.

I’m sorry to go on for so long. I really don’t know what to do now. Am I supposed to feel this way forever? Should I just accept it? Do I have to jump through the hoops of seeing a councillor and then getting referred to a “Mood course” for 6 months and endure my body and emotions and non-cooperative brain forever now? Don’t get me wrong, I am not dismissing the great work and need of therapists and councillors. Maybe they will discover something about me that I hadn’t realised, but I really don’t think this is a solution. Could someone please tell me if I’m missing the point?

24 Replies

  • Sounds to me that you need to change your doctors surgery, I changed surgeries a few years ago as my doctor wasn't doing anything and I was having problems getting an appointment. This new surgery are amazing, I can phone up at 2.30 and get in to see my doctor at 3pm sometimes 5pm but they always see me that day as they fully understand there is no point telling me to go in say Wed at 2pm because I could be asleep as I sleep all day most days as well as all night. So phone all doctors surgeries within your reach and ask them with your conditions how would they treat you.

  • Thank you for your response. I had already changed to this surgery last year and they diagnosed hypo on my second visit - something my previous doctors did not for 5 years previously. I was amazed and felt a huge relief that someone was finally listening to me and I wasn't imagining it all!

    To get my results this time I couldn't get an appointment with my usual doctor and I have discovered today that the person I saw was a locum. My husband suggested I got another appointment to see my usual GP but here are none available. The best they could suggest was to look on the online system on the 30th March and a few slots should become available with my normal GP for 4th April. I am now considering upping my dose until this time.

    Thanks again for your reply mlow67.

  • Do they not have spaces everyday for emergencies? Mine does.

  • They do, but you have to line up outside the surgery before it opens for any chance of getting one for that day or the next. Unfortunately I start work before they open, and 20 miles away to boot. To get one of these appointments I potentially need to take at least half a day off. I guess I am going to have to bite the bullet now and do just that.

  • If I were you I would phone all the surgeries and just ask if they allow people with our illness to phone on the day and get an appointment and join the 1 that does.

  • I think you need to find a doctor who understands that a TSH of 16.89 is a clear indicator of hypothyroidism and that 25mcg is only a quarter of the recommended starter dose for someone under 50 with no signs of ischaemic heart disease.

    No wonder you feel do bad. Have you compared your list of symptoms with the list on the Thyroid UK website?

  • He said to me that I shouldn't increase my dose as it will potentially accentuate all of my symptoms and contribute further to my apparent "stress". These results are worse that the original ones I was first diagnosed with. They were: T4 12 and TSH 7.5. I can't understand why wouldn't even consider the change in meds. Grrr!

  • Your doctor is an idiot! He has no idea what he's talking about! He wouldn't consider the change because he's totally thyroid-ignorant. Isn't there another doctor in the practice you can see? Because this one is going to make you really, really ill.

    25 is half the recommended starter dose for your age - not a quarter. 50 should have been the dose with tests six weeks after, and an increase. That 25 mcg is making you worse - obviously - because it has caused your gland to stop producing the little it was producing, so that you have, in effect, received a decrease in hormone.

    Imagine your gland was producing 75 mcg T4. You start taking 25. Gland stops producing. So all you have is the 25 you're taking, which means you now have 50 mcg less than you did before you started replacing! That's a big drop, and it's no Wonder that you're feeling ill.

    Of course, the figures are imaginary, but you get the point. You really, really need an increase. Don't stand for it. Refuse to see the counselor and insist - politely but firmly - on an increase;

  • Please read the NICE Clinical Knowledge Summaries on the subject of diagnosing, treating and managing overt hypothyroidism :

    Click on all the relevant sections in the left hand column. The doctor you saw clearly hasn't got a clue and needs to be educated about how to actually treat hypothyroidism.

    Your doctor also clearly has no idea what the symptoms of hypothyroidism actually are.

    You must feel absolutely awful. But please don't despair. People can and do feel better, even though in some cases they have to treat themselves.

  • Hi Craftyang,

    You are not crazy. This happens all the time. I've had symptoms since a kid and didn't get diagnosed until in my 40s. It is not normal to feel the way you do for one. I've had bloodwork done and they told me everything was fine lol and it wasn't. For one, you have to find the right doctor. For two, (as I'm going through this now) it takes time to get leveled out and finding what works for you. You know your body and you know when things are not right, so be your own advocate.

    I have a doctor that has hypo and she understands fully and that's what youi need to find, a doctor who is well educated with this and understand what you're going through. A lot of doctors want to put you on anti depressants or counseling and don't really fix the problem; they put a band-aid on it. I had it happen to me. I told the doctor point-blank, I'm not going on anti depressant meds as I know my body is not functioning right which yes, of course, it causes depression. All they wanted to do is cover up how I was feeling and I wasn't doing that. There are all sorts of options you have and I would take those options first and then if push comes to shove and things are not working over time, then take a look at these others.

    But it's going to take some time as it is with myself. I am trying to get balanced myself. Your symptoms are real. A lot of people blame it on stress or getting older. Be patient and persistent and don't give up or give in. Stay strong as you know your body. When you get balanced out your symptoms will be gone as I was there with it when I was on my Armour. When I got off of it for three months my hypo came back with avengence and I am now getting back on meds to get back on track.

    Hang in there and keep us posted. Huggggggggggggggggggs to You!!!!!

    Debber :))

  • I hadn't until now Ansteynomad... Oh my goodness! I have ticked the majority of symptoms and in some sections, all of them.

    When I explained to the doctor the main symptoms that bother me on a daily basis, he replied by describing how each of them are associated with stress and said how I should forget about the thyroid issue for the time being and concentrate of what in my life is affecting me mentally. I felt incredibly patronised but unable to speak up for myself. In any other circumstances I would have too! I feel so annoyed with myself.

    I shall continue to try for an appointment with my usual doctor and try to forget about the one who clearly had his own agenda.

    Thank you for your reply.

  • That happens to us when we're feeling ill. It's difficult to find the words and the energy to stand up to someone who is so sure of themselves, and so patronising (as they often are!). Don't be annoyed with yourself, it's a natural reaction. For one thing, we are so surprised at the doctor's reaction that it takes the Wind out of our sails. I am a strong (some would say 'over-bearing') person, but even I have found myself sitting in a doctor's surgery with my jaw hanging down, unable to speak, in amazement at the rubbish that was spewing out of a doctors mouth. And believe me, I have heard some rubbish in my time! lol

    But, you know what they say - he who fights and runs away, lives to fight another day! It gives you time to collect your thoughts - and information - and jump back into the ring refreshed, for a second round - one that, hopefully, you will win!

  • You are one of the people on here Greygoose that has helped me in so many ways, too. You are so right and you told me that prior to all this too when I was new.

    You're right about the "rubbish". When I was told about having the stress in my life I didn't have any stress. I don't have no kids and I had everything i needed and spoiled. I told the doctor that, too. He said well, something is stressing you out. LOL. My current doctor said everyon want to blame it on stress and getting old -- she says, "No, it's not." She, too, was never diagnosed when a kid and she knows firsthand.

    I wonder what the world would truly be like if we could get the people walking around that don't know it, Greygoose. It would be a much happier world for sure.

    Thank you GG for what you do for me too.

  • You're more than welcome, debber, but I do little enough. I just wish I could be of more help to people. :)

  • You're great Grey. You're so knowledgeable with all this complexing stuff. Don't you wish it was an exact science! I had no idea how complexing it was, to be honest with you.

    What kills me is with all the medical doctors out there and they're not helping people and cough it up to stress. Really!??? I don't get it at all. I mean, even myself, how could I have been missed all those years with this? Hindsight is so much clearer. I slept and slept when I was a younger and my parents didn't understand how I could sleep so much and then to still be tired. I had it bad.

    I have to say the UK is more on top of this than we are here in the USA. I share what I know with people as I want them to know about it. We need to have more recognition with all of this as it's a real problem and if it goes undetected deadly.

    I know how you feel, I wish I could help more people, too. All we can do is get it out there and share our stories and what we know with people. I think a lot of people chose the easy road which is not the right road. The right road takes work, for sure.

    Take care of yourself and enjoy your weekend. I know I'm going to. I'm went food shopping on my lunch hour so I didn't have do over the weekend. I'm going to watch movies and make popcorn and just chill. I heard it's supposed to be really nice tomorrow. If it's not cold I'm going to go for a walk.

    Take care of yourself Grey. Love ya!!!

  • You too, debber. Enjoy your weekend, it sounds fabulous!

  • Thank you everyone for your responses. I am feeling now that it would be futile to continue talking with this locum and should just forget about him. I felt so positive going in to get my results today, and reading posts in this site has been inspiring and motivating for me to stand up for myself, particularly as i'm the one who knows my body best. Unfortunately my confidence went out of the window today.

    Thank you for reassuring me everybody. I now know at 38 years old, this really shouldn't be how I feel all the time.

    Good luck to you Debber in getting your health back on track.

  • Craftyang,

    No, it is not the way you're supposed to be feeling at 38. In fact, this reminds me of me as that's when I started pursuing an answer with myself.

    You're going to be better than ever, you wait and see. Everything you describe I can relate to. And Greygoose is right, "rubbish". It's amazing how physicians don't look at all of it and they are just looking at one element of it.

    I called to confirm my appointment and it's next week to see my doctor (((whom I love and so blessed to have her))) and she got on the phone with me after speaking with her receptionist/office manager. I told office manager/receptionist about my symptoms I was having and she told my doctor who was standing there. I couldn't believe the doctor got on phone with me. She told me to take 3 tablets of the Nature Thyroid as that is what she prescribed for me and wants me at that, so that is what I did this morning. She said if I feel my heart racing to lower it, but she doesn't think that it will and told me there is a good chance it might be up to four but wants get blood work first just to be sure. Just wow!!!! After taking three this morning i can tell already. I'm more focused and alive and my heart is not racing. It was so nice to talk to her yesterday and I felt special and I told her that. She told me, "well, you are special, Deb" It just humbled me. I see her next Friday and I have a HUGE hug for her.

    Keep us posted Crafty on the beginning of your journey to feeling good. It's coming. It's a journey but you will get there. I'm still climbing too Hun and believe me there are days that your body slams you but they get further a part.

    Lots of Love!!!! Debber

  • I said to the useless endo that if I was a woman he would be telling me I was depressed! He denied it.

  • It's infuriating isn't it? And an apparent specialist too! I hope you've got some support now from someone who isn't useless.

    I've just gone through my list and compared it with the signs and symptoms list from Thyroid UK. Only 4 of mine (of which there were 38!) were not on the Thyroid UK list.

    Onwards to someone who (hopefully) knows what they are talking about.

  • Not yet ,off to see GP I first saw whose niece was hypo and not right until T3 added. But he went I'll for months and I showered the next GP with prints from this site until he gave me the bums rush to the endo and they were clones. No idea what is causing the residual symptoms,cannot be thyroid as bloods are normal!

    No offer to find out.

    If get nowhere next week will have to look at private or take the Thyroid S if it arrives!

  • As I've said before, if a doctor says to me 'it's not your thyroid', I say 'well, what is it, then?' And if they dare to just shrug and say 'I don't know' as they usually do, I say 'well, bloody-well find out, then! You're a doctor, aren't you?' lol

  • Thank you everyone for your replies. GreyGoose, I could have done with having you with me yesterday!

    Today I was successful in getting an appointment with a different doctor (much to my amazement). The short story is that he has increased my dose to 75 but with HUGE emphasis on the risks it entails if the dose is too high. I have to see him again in a few weeks to check how I am doing.

    The long story....He was annoying. But I had gone past feeling sorry for myself after yesterday and moved on to anger (lol). He backed up his colleague and explained why he thinks the councillor route was the most suitable and that all my symptoms suggest stress. I explained my comparison of symptoms with that on Thyroid UK and he made some sweeping statements about finding any old rubbish if you spend enough time Googling! I was not amused, I am an educated and reasonable woman, I do not randomly Google and believe everything I find. He did a lot of huffing and deep breaths in what seemed to be a way of biting his tongue while we were talking. He was asking why I had changed from taking the meds in the morning to the evening. I explained the sickness I felt with it, he laughed. He went on about there being no medical reason for that. I was quite annoyed by this point and snapped at him how that might be true but i'ts my body, I know it best and this worked for me. Eventually he stated the "pragmatic" approach would be to go ahead with dose change. He said "I hope you are right, feel free to come back next time and tell me so, but we will see".

    Whilst there he began discussing the TPO results - these results have never been shown to me before (I ask for printouts each time too). The reason for discussing this is he said there could be a chance of Hashimotos as my T4 and TSH results have gone up and down but he doesn't suspect it at the moment. He explained to me how it would be treated if I did have Hashimotos which I understood, but that's about as far as my understanding goes. I can imagine that would be another can of worms. My TPO last Aug was 643 the latest is >1000. Is there a "normal" range for this?

    Anyway, sorry once again for another long post and thank you all so so much for your kind and supportive words.

  • Every lab has own ranges but my experience is that the range is <34 for anti-TPO. Which means everything above is positive.

    With your thyroid results it's crazy the docs you saw are saying it is stress. Don't doubt yourself, of course it's your thyroid!! Keep fighting, you need enough levo to get your TSH around 1.0.

    Good luck!

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