Feeling lost, please help!

I can't describe how I am feeling and nobody around me seems to take my condition seriously so this group really could be a godsend...can anybody relate to how I'm feeling or offer any advice?

I was first diagnosed with Graves Disease and hyperthyroidism in 2012 after suffering with extreme fatigue for years. The GP tried to medicate with Carbimazole however after a severe allergic reaction it was recommended that I have radioactive iodine treatment. I had this in July 2012 and since then I have developed hypothyroidism and have been taking varying levels of Levothyroxine to try to manage my levels.

I am now on 100mg of Levothyroxine once a day and am feel appalling...I am extremey tired, have dry and itchy skin and scalp, am experiencing 'brain fog', anxiety, have brittle nails and my menstrual cycle has stopped completely. The endocrinology department at the hospital were supposed to see me today but have cancelled my appointment because of a staff member leaving and they cannot give me a new date at the moment so I am feeling incredibly alone in all of this.

Can anybody help?? What are my rights with changing hospitals? Has anybody else found that this affects their ability to work?

A completely lost newbie :(

15 Replies

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  • There are plenty here who believe you. We have seen some very bad treatment of people in just your sort of position.

    One thing that would really help is if you can get hold of your blood test results - especially the last two. This link explains that you are entitled to them and how you can get hold of them:

    thyroiduk.org.uk/tuk/NHS_In...

    From what you are saying, it looks very likely that 100 mcg is inadequate for you. Very often medics are happy to see a TSH test result simply being within the reference range. Whereas what is usually needed is for it to be near the bottom, or below the bottom of the range.

    Affect work? Of course it does.

    Change hospitals? Well, it is possible to change consultant, etc. but,for now, I would settle for getting your results and posting here. In most cases a GP could do everything that is necessary - if they understand what is needed. So this might be hassle for no good reason.

    Rod

  • Thank you for your advice Rod. I managed to speak to my GP today and have the following blood test results:

    September - TSH 8.2 (50mcg Levothyroxine)

    November - TSH 6.5, Free T4 12.5, Free T3 4.24 (Levothyroxine increased to 75mcgs following these results)

    December - TSH 11.0, Free T4 13.5, Free T3 3.72 (Levothyroxine increased to 100mcgs following these results)

    These are all I could get hold of for the time being but to be honest the numbers don't make any sense to me. Do these explain why I am feeling so awful at all?

    Thank you again. It is so nice to speak to somebody that understands.

    Emma

  • Hi Emma

    Just a pointer, if you want to reply to someone in particular, you have to make sure to click on 'reply to this' otherwise they will not get an email letting them know that you have responded.

    Also, you really need the ranges to go with the tests. Did you get a printout? They should be in brackets next to the results. You are entitled to your results:

    thyroiduk.org.uk/tuk/NHS_In...

    Louise

    x :-)

  • Hi

    Although Louise is correct, we do need the reference ranges, it is clear that your TSH is too high meaning that you are likely on too little thyroxine (11.0 is too high!)

    It would be very helpful to have the reference ranges to determine just how bad things are. For example, a T4 of 13.5 is the bottom of some ranges but the top of others.

    Nevertheless it does very much look like you need a further increase. It would be great if your doctor would continue to increase your dose until your TSH drops below 1. 1 is the magic number you are aiming to be below. Some people need their TSH to be undetectable in order to feel well.

    I hope that helps

    Carolyn x

  • I should probably add that the September result was taken just one month after receiving radioactive iodine treatment.

  • It took quite a few months for me to get to my level with thyroxine after RAI they didn't start my thyroxine till 3months after the RAI treatment., I researched so much about it and realised it could affect so much of your life... I found that I need personally to be the upper end of the range. I asked lots of question and fortunately the doctor listened to me, t3 was a answer for me, I only take 10mcg of it and 125mcg of t4.... Don't get disheartened though... I was also at the age where as I had the RAI and my thyroid didn't work it put me in early menopause.. So had that to contend with... Just keep going as best you can it should all get better....... X x x

  • Hi Deb,

    Thank you for your reply. To be honest the ranges and different medications make no sense to me at the moment. Are T3 and T4 different to Levothyroxine? I definitely need to do some research!

    I am 26 years of age and didn't realise that RAI could cause early menopause. As somebody that desperately wants children this is terrifying. Should I be doing anything to protect against this or is it inevitable?

    So so many questions and such a scary time, I do apologise xx

  • Oh no I didn't mean to worry you, I was 42 when it all happened to me, I'm sure it won't happen to you but maybe worth asking! T4 is thyroxine, T3 is liothyronine and helps the T4 work better. I bought book after book about it all so I understood what was happening to my body, even before I had the RAI.. Write all your questions down you want to know and take it to the doctor with you.. I had a lot and still do some days of brain fog so that's what I did. My other downfall was I started putting lots of weight on when I was hyper, as I was hungry all the time....I still struggle with loosing it now but I am an idle dieter!!!! Take care and I know it make take time but you will start feeling better..xxxxxx

  • I think it is unlikely that you have been put into early menopause by the RAI as you are so young, but being hypo will sometimes cause this, temporarily, in people who are a little older. It is often reversed once correct dose of thyroid hormones is reached.

    What is likely in your case, as you are quite young, is that your periods have stopped temporarily due to the inadequate levels of thyroid hormones. This is not an uncommon symptom.

    In people who are a little older, low thyroid hormone sometimes allows menopause to begin early but it is sometimes reversed once correct levels are achieved.

    Please talk to your doctor about it if you are worried, but hopefully all your symptoms will reverse as you get to the correct dose.

    Incidentally, once you decide to try for a family, you will want your TSH to stay below 2 and preferably below 1 in order to conceive.

    Please try not to worry too much but do make sure that your doctor is aware of all your concerns.

    I hope this helps.

    You may also want to get your iron, ferritin, vitamin B12, folate and vitamin D checked to. Low iron and ferritin could also be contributing to your lack of periods. Deficiencies in all of the above are not uncommon in people with thyroid disease.

    Take care

    Carolyn x

  • Hi emma_marie - sorry to hear how awful you are feeling - I am afraid that too many people on this site can relate to that, due to the poor understanding and treatment that are so prevalent in this countryy.

    Your TSH is really very high still - indicating that you need another increase in thyroxine (as do your symptoms). Generally people feel better when their TSH is under 1 ( I seem to feel best with it at about 0.07).

    Thyroxine is another name for T4 and Liothyronine is another word for synthetic T3. Your body has to convert the T4 (a storage hormone) into T3 (the active hormone which is used by every cell in your body). Some people need to take T3 as well as T4, if their body is unable to convert the T4 very well into T3.

    We do really need the range for your FT4 as this is really a better indicator than TSH as to how your thyroid is doing. The ranges vary very much by lab, so your result could be high or low (but the TSH suggests it is too low).

    I'm afraid I don't know anything about RAI causing early menopause - will try and find out about this for you.

    Have you had a look at the main TUK site - there is so much info on there which you might find helpful:

    thyroiduk.org.uk/tuk/index....

    Clare xxx

  • Hi emma_marie,

    Yes, the test results that you've quoted above very definitely do explain why you're feeling so bad. The numbers you've given for the December test indicate that you were in desperate need of the levothyroxine dose being increase to 100mcg daily.

    How are you feeling since you've been taking the increased dose? And when are you next due for a thyroid test?

    Please don't worry about going into early menopause, RAI does not typically cause this to happen at your age. Being on the right dose of thyroid hormone replacement ( levothyroxine) is important in order to be able to conceive, and once pregnant you will need to be monitored carefully throughout the pregnancy to make sure your thyroid levels are appropriate. :)

    There is a very useful little book that makes a good starting point in helping you to learn about your thyroid condition. It's called 'Understanding Thyroid Disorders', written by Dr Anthony Toft and published by the BMA. It covers the basics, including pregnancy. You can buy it from local pharmacies and online. Here's the link to it on Amazon amzn.to/zQ7dVm

  • Forgot to mention that you can see a sample chapter of the book I've mentioned above by clicking this link

    familydoctor.co.uk/sites/de...

  • I have been on the increased dose now for about 2 weeks and so far have seen no improvements in my general health however I do know that this can take some time.

    I had no idea that I was aiming for a TSH of 1 or lower...I have been very much kept in the dark by the 'professionals' so far and am quickly seeing that I need to regain some control and understanding of my own health. My next blood tests are due in 3 weeks and I am expecting a print out of my past blood results in the post any day now so I will post the ranges once I have them.

    I will also definitely take a look at that book and the website recommended above.

    Thank you so much for all of the advice and comments, I wish I'd found this forum sooner xx

  • It's quite an appalling state of affairs that you have been kept so much in the dark. Your consultant and GP should be helping you to understand what it's all about. However, don't think that it's just you. Possibly the biggest reason for this support group needing to exist is because so many of us have been kept ill and uninformed by the medical professionals that are supposed to be there to help us.

    Keep reading other posts here and asking your own questions, then hopefully things will start to improve gradually. :)

  • I finally have my ranges and so was hoping somebody could shed some light on what they mean. My most recent blood test in January gave the following results:

    FT4 15.2 pmol/L - (9.0-19.1)

    TSH (XaELV) - 5.7 mU/L (0.35-4.94)

    Does this make any sense as to why I am feeling SO run down all of the time?

    I am seeing the specialist tomorrow so plan to go to her with as many questions as possible. I have literally had to fight for this appointment so I need to make the most of it! Would the specialist be the one to request tests for iron, ferritin, B12, folate and vitamin D?

    Also, I have a blood test next Monday afternoon. Should I take my Levothyroxine as usual in the morning?

    Thank you again for all of your advice.

    Emma

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