New here and feeling like I want to cry

I've been having symptoms of an underactive thyroid for a couple of years but blood tests have been normal (yes I know). It's been getting gradually worse over the last six months and I went back to my GP last week when I realised that my eyebrows were fast disappearing and googled it. I'm awaiting the results of the subsequent blood tests although I was told they only do a TSH test for thyroid issues. I printed off the signs and symptoms list and was shocked how many boxes I ticked but the GP barely looked at it. I'm 60, exhausted, aching, tearful, overwhelmed by everything and anything and depressed that my 89 year old mother is far better physically and mentally than me. Can't write any more for the tears.

18 Replies

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  • Awww Angste (((hugs))). We know how you feel :(

    When you have the results of your tests, come back and post them and members will advise.

    In the meantime, to get a full picture of your thyroid status, you can get all the relevant tests done with an easy to do fingerprick test at home. Also, optimal levels of vitamins and minerals (not just in range) are necessary. You can also get these done with the same test. You will then have all the tests necessary to see what's going on and what needs addressing.

    bluehorizonmedicals.co.uk/T...

    Very well worth doing and if anything gets flagged up you can show the results to your GP. Even if he won't accept them you can ask him to do his own.

    When having thyroid tests (surgery or the fingerprick test) do it first thing in the morning, no later than 9am and fast overnight. This gives the highest possible TSH which is what you need for diagnosis or, when on thyroid meds, when looking for an increase in Levo or to avoid a reduction.

    Hang in there, get the Blue Horizon test done, come back with the results and we'll put you on the right road to hopefully start feeling better.

  • Nutrimeds.com has natural or no fillers in their NDT' s (Natural Dessicated Thyroid) and they have a choice of Povine which is made from pigs or Bovine made from cows. I like the Bovine. This is bio identical to our hormones and it really helps!! And you have to take it and monitor your symptoms try to raise it two weeks at a time and dont go over 5 pills increase it till your symptoms go away!

    Also, look up stopthethyroidmadness.com this site will teach you so much on how to help youself!! Take care...Michelle

  • This is a past post and Nutrimeds are non-prescriptive so aren't classed as dessicated thyrod hormones,

    healthunlocked.com/thyroidu...

  • Angste Don't consider any self sourced thyroid supplements or meds until you have had those full tests done and you know what you're dealing with. As I said, come back with your results for further guidance and how to approach your GP. If you do have a thyroid problem then it may very well be simply addressed with Levo, most people do very well on it, they won't be on here though because they're getting on with their lives.

    One step at a time :)

  • Thank you for your helpful replies. I'm probably being overly negative and I haven't even had the results yet, that's the depression I suppose. My husband is being as supportive as he can and keeps saying 'one step at a time' but he feels helpless when I dissolve in tears - it's not me any more. Thank goodness I'm not working any more, having retired last year from a stressful job.

    My non-fasting bloods were taken at 3pm last Wednesday, so that doesn't bode well, but we'll see. I will post the results.

    I've found stopthethyroidmadness, and also various facebook groups. it's good to know I'm not the only one feeling like this.

    I'm very grateful for your messages, thank you xx

  • Unfortunately Angste TSH is lowest in the afternoon and highest early in the morning, so chances are your GP test won't help much. But never mind, do the Blue Horizon test early in the morning and you'll get a proper picture.

    Well done to hubby for supporting you. Have you seen ThyroidUK's main website, a good source of information thyroiduk.org.uk/tuk/ It seems a bit slow today but there's a purple menu on the left hand side you can work your way down, starting at 'About the Thyroid'.

    Make a new post when you have your results, there's no 'bumping' of threads on this forum, the threads just move further down the page as new ones are added. Also, when replying to a particular person, type your reply in the message box of their post, that way they get notification, otherwise it will be missed. You can also tag people by putting @ directly in front of their name (no space) and a list of names come up, click on the appropriate one, it highlights like I've done with yours above, and the member gets a notification :)

  • Angste, I feel for you. Like you, my 84yr old MIL is fitter than me! I see people dashing around and wonder why I can't dash like they do? I'm 60 this year and I'm hoping life begins at 60, it's been going down hill since 50! I wasn't diagnosed for ages and really have never been diagnosed! Endocrinologist said I had no endocrinology probs! Rheumatologist said no auto immune probs! GP said for years my bloods were normal! Eventually he gave me a trial on Levothyroxine which helped with some, but not all, symptoms.

    I've been on Levo for a while but still not well. I had the Blue Horizon finger prick blood test which revealed I'm not converting T4 to T3. Showed the result to another GP and I got the feeling he didn't even know that the Levo/T4 needs to be converted by your body, into T3, for the body to be able to use it. THEY JUST DONT HAVE THE KNOWLEDGE!

    I guess I'm not giving you much hope but read, read, read as much as you can. Don't rely on the Drs, though, if you can get one on your side it must make things easier.

    If you do the Blue Horizon finger prick test then post on here you will get good advice. I wish I'd done it before, I'm not 100% now but I'm on track.

  • Welcome to our forum and most of us have had similar experiences to yourself.

    Did you have the very earliest appointment and fasting (you can drink water). Get an print-out of the blood test with the ranges and post for comments.

    Some people's TSH doesn't rise high enough to be diagnosed (if in the UK) as it has to reach 10. In other countries we are diagnosed and prescribed if TSH is around 3.

    You can also get a private home blood test in the UK which will cover more than TSH and its a pinprick one.

    After you get responses when you post your blood test results ask GP for B12, Vit D, iron, ferritin and folate.

    Always get print-outs from now on of your blood tests as we have to read, learn, and ask questions if we get well. Once you know that doctors no longer learn the very basic of diagnosing a patient without blood tests that is why we are on this forum. They appear to know little and some members through trial and error have recovered their health themselves with members' support.

  • 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 the most common cause in UK of being hypo.

    TPO is rarely checked and TG almost never checked. More common to have high TPO p, 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.

    If you find you have Hashimoto's (high antibodies) then you may find adopting 100% gluten free diet can really help reduce symptoms, and lower TPO antibodies slowly over time too.

    chriskresser.com/the-gluten...

    thyroidpharmacist.com

  • So sorry. It sounds as if you are. A few years is a life time when you feel so terrible. I have no idea why so many doctors are only testing tsh now. It can take so long for that to rise for some people. I would def look into getting the blue horizon test as its pure guesswork what is going on with only the tsh tested.

  • TSH will not and never can pick up Central Hypothyroid

    your GP is totally and utterly wrong to refuse to do free t4 and free t3

    get hold of a copy of the Pulse article on thyroid from louise.roberts@thyroiduk.org and take that to your gp and insist on

    thyroid antibodies

    TSH

    free t4

    free t3

    ferritin

    folate

    b12

    vit d3

    they are all interconnected and have to be done in order to get a true picture

  • thank you for the info and I e-mailed Louise but it came back as no such address unfortunately :(

  • i will get it checked for you

  • The email address you need is :

    louise.roberts@thyroiduk.org.uk

  • I'm in my 30s. I was diagnosed hypothyroid in my early 20s but never ever felt well on Levothyroxine. I've been struggling without progress for nearly 20 years. Mum in her 60s is far healthier and active than me. I only discovered this site a few months ago but I'm sure the lovely people here will help you get better.

  • I feel for you. I'm 37 and I swear my 87 year old grandmother has more energy and life in her than I do. I'm a busy mum to 3 and for the last year have become depressed, anxious and agoraphobic due to how unwell I feel.

    In 2015 my tsh was 5.35 bur as the NHS range goes up to 5.5 he dismissed it and like you ignored the print off of symptoms I'd ticked. I ticked well over half. My main symptoms were chronic fatigue which I still have badly now, brain fog, loss of eyebrow hair, weight gain and feeling cold at times. My main issue has aleads been the crippling fatigue, weak legs and energy crashes that land me in bed for days if I overdo housework or go out of thr boys. It's ridiculous at 37. That's the thyroid for you.

    I'm on levo thyroxine now. I test privately and send the results to my gp and he has treated me based on them because the NHS tests I couldn't get some early enough. I had 1 afternoon test and my tsh was under 3 so he told me I didn't have a thyroid issue. I went private with medicheck, they offer tsh, ft4 and ft3 for £29 on thyroid Thursday's. I did this to get an idea of what was going on and I monitored it every 8 weeks.

    Your best bet is getting a print out of your results and posting them here. Then people can advise you on your next step.

    I hope you feel better soon. I can relate to how you feel and it's no fun.

    Take care

    Julie

  • Thank you for this info about blood tests. I'm waiting until I see my usual GP tomorrow and hopefully she'll listen to me. I'm appalled that so many people have to do the work that a GP should and have to fight for treatment. Thank you for sharing your story and keep fighting!

  • Thank you and good luck. Let us know how you get on xxx

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