Feeling rubbish

Since joining this forum I realise I have had hypo symptoms since 2008. My gp refuses to ttreat me for hypo as all my test results have come back within range (although all borderline) despite my long list of symptoms. I am feeling particularly sorry for my self just now over something silly. All my bras are feeling really tight and despite forcing myself to exercise I feel fat and ugly, tired and tearful, in pain and generally fed up. The bra thing has really upset me. I havebeen taking b12 supplements and vitamin d3 for 3 weeks but feel no different. No plans to go back to gp as brain fog takes over and I can't speak. I feel guilty when I read posts about people on treatment as in some bizarre way I am jealous! Perhaps I''ll rename myself fat, fed up, and facing 50!

11 Replies

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  • Don't feel guilty! I would be feeling jealous too. In fact I was before I was officially diagnosed. It is awful knowing you are ill and not being allowed the treatment you need.

    Do you have your thyroid test results? If you have, can you post them on here so we can have a look? We may be able to help you formulate a case for a trial of levothyroxine to see if it helps.

    Are you in a position to see a private doctor? If so, Thyroid UK has a list of sympathetic private doctors who are much more likely to treat sub-clinical or borderline cases. You can fill in the request form here thyroiduk.org.uk/tuk/forms/...

    If not, keep plugging away at your GP or perhaps try a different one at the same practice.

    I'm sure more people on here will have more advice to help you.

    I know how you feel about the weight though. I am quickly running out of clothes that fit! Fortunately now I do have a treatment that seems to be working and once I am on the right dose I should be able to lose this extra 5 stone!

    Keep posting and keep us updated with your progress. We will do our best to get you there in the end :)

    Carolyn x

  • Thanks Carolyn, you are all so kind. My latest results were

    Tsh 3.76 range 0.35 -5.5

    Free t3 4.40 range 3.5 - 6.5

    Free t4 14.2 range 10.5 - 20

    B12 300 range 180 - 900

    Ferretin 40.5 range 10 -200

    Folate 6.7 range 3 - 20

    Serum iron level 15.4 - range 11 - 30.

    My tsh in 2008 was 2.76 and in 2011 was 3.2.

    Am at my wits end and I think my hubby is becoming fed up too. I am getting scared. The brain fog scares me as I am a nurse and need to be on the ball. I started a new part time job in January so am desperate not to go off sick. I want to be well, play netball, stay up late and not have painkillers on my favourites on my internet shop.

  • Just looking at your results I can see you are borderline. I was like this for a long time before finally being diagnosed hypothyroid. If you can afford to see one of the private doctors on the list it would be worth it to get treatment.

    Your B12 is below 500 so you would benefit from taking a B12 supplement. The maintenance dose many people recommend is 1000mcg methylcobalamin (the more easily absorbed form of B12). As your level is quite low you might want to consider a higher dose. I am currently taking 5000mcg daily of the Jarrows methyl B12 which I let dissolve under my tongue.

    Your folate is at the lower end of the range too. You could do with taking some folic acid. I don't know the recommended dose of this but I think 800mcg might be a good amount as you are low in range.

    Your ferritin could be higher too and, as your serum iron is also in the bottom half of the range, you would probably benefit from taking iron with vitamin C and also vitamin B2 (riboflavin - also found in many foods, including marmite).

    B12, folate and iron are all essential for getting thyroid hormones into the cells so that they can be used. If you get your levels up you may start to feel a little better. Not only that, but you might find that once the thyroid hormones are getting into the cells, there may be less in your blood which may take your values over the limits of the reference ranges, allowing you treatment on the NHS. This can take a while though so, if you can afford to, you might want to consider seeing one of the private doctors on the list.

    I hope you do start to feel better soon.

    Carolyn x

  • Another tip; when you get your blood taken, try and get it done as early in the morning as you can. This is when your TSH is highest. You want your TSH to be as high as possible. If it goes above the reference range, even if your T4 is still above the bottom of that range, you might be able to get treatment!

    Another thing is that if your B12 isn't high enough it can artificially lower your TSH which is not what you want. If you get your B12 up you might find you TSH raises slightly too, which is better for getting a diagnosis.

    Sorry if I am confusing you with all this information!

    Carolyn x

  • Thankyou again. It's not confusing and from what I have learnt from this site it makes sense. I really can't afford private at the moment as just gone part time and my son off to uni in Sept so putting something by for him.

    I did have my bloods done early as I am a practice nurse so got one of my colleagues to take it before we started work. It was about 8.30 I think.

    Can I get all these vitamins in a shop like Holland and Barrett or online? I am certainly going give it a try. I am so grateful for your advice.

    Now do you know where can buy a decent bra..........!

  • I get my B12 on line. Amazon do it.

    As for bras I recommend bravissimo.com/ If you are a larger cup size this is a great place to get bras. Their customer services are very good too. If you order a bra but it's not quite the right size, just give them a call, return the other and they'll send out the correct size for you. Even better, you can go to one of their stores and they'll fit you properly. They are much better than M&S. They're not cheap but they are good and last really well :)

  • The decline of wellbeing with this condition is horrible.

    I've read that in America anyone above TSH of 2 with symptoms is considered for treatment so some experts recognise problems can begin with much lower TSH level.

    I've been documenting my symptoms - using the list on thyroiduk and highlighting the ones which seriously effect me (and my job) in red, symptoms which have improved a little are yellow, and those now gone are green. I've now got two of these.

    I also prepared a weight chart, going back the past 10 years, and highlighted red when I went into a BMI of overweight - this ties in with the hypo symptoms. I prepared this to show the next GP when I go in to argue for an increase in levothroxine.

    I'm suggesting these as ideas that you could prepare evidence which document the effect your syptoms have on your life. If the doctors don't listen, perhaps they need to see this on paper and highlighted red!

    I'm sorry you're feeling so ill and hope you get some help soon.

  • The TSH reference ranges are pretty much the same in the US (typically around 0.5 - 5) but endocrinologists are encouraged to consider anyone with a TSH above 3 as being hypothyroid. Unfortunately many people are still not being treated until their TSH is above 5 (which is better than the 10 that many doctors go by in this country!) and many doctors still insist on using levothyroxine. They also have the problem of "we can't increase your dose because you are in range" even when near the top end. I have a friend in the US who is struggling against this mentality at the moment. The do still have a battle to fight in the US but things seem to be changing already. It really does seem to depend on your doctor and your health insurance in the US, but they at least do have guidelines to consider treating patients with a TSH above 3 which is much better than over here!

    That is a really good idea about using the symptoms list to show the GP. I might have to try that!

    Carolyn x

  • Hi Carolyn

    What you describe with ranges ties in with my experience last year - I was at top end (within range) but feeling ill, also big weight gain which was making me very upset.

    Don't forget to colour the symptoms in! ;)

  • I suggest having a look on tpauk.com/, Sheila the founder always suggest writing to GP's as they don't like getting written complaints. There is a process to take it further but TPA will have lots of advice for you.

    I changed GP practices two years ago as I was getting less than good treatment, don't be scared to do this it is your right. I would move again if I felt the need - new practice is pretty good.

  • Also serum B12 test isn't good enough you need active B12 see pernicious-anaemia-society....

    B12 deficiency can make you feel terrible and is a very serious issue which is missed all of the time.

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