Fed up 😞

Hi. I've had thyroid issues now since I was 15 however doctor said I was borderline so no meds until 2.5 years ago when I was started on levo. I have a little boy who is nearly 3. I'm 39 years old and feel my life is just flashing before me with no energy and I'm missing out on doing so much with him because I'm just so drained all of the time.

Just since January I've put on over 3 stone and no changes to diet or anything I just can't seem to shift it I also quit smoking and should be feeling better also but get quite out of breath just going upstairs .

For the last two years I've gone to the doctor with a list as long as my arm of things effecting me so much and we have gone through my docs suggestion of blood tests ever 8 weeks due to my levels going from 7 to 19 then only ever dropping by a small amount. He told me he just doesn't understand how the levels keep going the way they are so upped my 50mg to 100 4 months ago however nothing has changed.

Made an appointment this week and explained no changes but they then said it was my anti depressant that was effecting things so we would look at that instead and reduced the amount I am taking.

I constantly get hot sweats with cold clammy skin. It's embarrassing. Headaches. Constipation or the runs. No in between. Aching joints. Extreme fatigue. Restless legs. Vision issues. Optician advised perfect eye sight. No issues.

The list goes on.

I know things aren't right with me. I can't function. Can't get my words out. Forget everything like you wouldn't believe. Suffer tears and anxiety I'm so frustrated.

What would your advice be?

I'd appreciate any help. Thanks. Xx

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15 Replies

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  • That sounds miserable for you. :(

    Do you have your results of blood tests to hand? It would be very helpful if you could post your results. If you don't have them you can get a printout from your GP's surgery. Also have you been tested for B12, folate, ferritin, vit D? All those can make a huge difference to how you feel and they may be sub-optimal (and there are other factors too). If you can't get your GP to test for them you can get online finger-prick kits to test (which is what I did). :)

  • I don't have them. When I rang yesterday I asked the receptionist for a print out and she said I had to make and appointment with the doctor to get them.

    On Wednesday when I had my bloods taken she said they were checking thyroid. Liver and iron and also bone surroundings. I told the nurse about what's been going on and she said I should probably have been referred by now. Will make an appointment on Tuesday when the docs are open again.

    Do you have the site you used for the online test? Thanks for your support. 😊

  • Blue Horizon offer a range of good comprehensive tests:

    bluehorizonmedicals.co.uk/

    I also got some tests from Medichecks:

    medichecks.com/

    City assays does a Vit D test if you just want that one done separately at any time:

    cityassays.org.uk/

  • Excellent. Thanks so much. X

  • You shouldn't have to make an appointment to get copies of your results - what a waste of an appointment, and I'm shocked the receptionist told you this! You just have to make a Subject Access Request. It has been discussed in this thread today, and it is easy :

    healthunlocked.com/thyroidu...

  • Thank you.

    I had my brothers wedding Saturday then the soonest I could get to the docs was today but I couldn't get an appointment so will need to call tomorrow morning to see if they have an appointment Friday.

    I'll have a look at the form you mentioned however.

    I'm feeling sick loads on top of everything else. Not sure what's up however I feel I could pass out unless I eat something quite quickly - which isn't a good thing as means I'm eating all the wrong things Morris ......

    but this has gone on and off for years and I've been tested for other things then which also and came back fine.

  • Hi. Eventually I've managed to get the results from the doctors today.

    Tsh- 4.16

    T4 - 20

    Feretin- 64

    Does this shed any info for me at all? X

  • Do you have the reference ranges for your results? If so, could you write them in as well as the actual results.

    They will look something like this :

    TSH 4.16 (0.3 - 4.5) or something like that. The numbers in brackets vary from lab to lab.

    You will get more replies and more feedback if you post a new thread rather than adding to this one. People often tend to ignore threads once they get more than a day or two old.

  • Awe thank you.

    I hadn't realised that

    No I didn't take down the numbers in brackets sorry.

    I'm popping back to doctor Tuesday or Wednesday so will ask them to give them to me. They said it didn't show T3

  • It's a pity you haven't got the T3. I suspect it is too low. Your TSH is surprisingly high given your Free T4 level, and a low T3 would be one possible reason for this.

    Incidentally, it is not TSH or Free T4 which makes us feel well or unwell. It is levels of Free T3 that make the difference. A Free T3 which is too high will make people feel hyperthyroid. A Free T3 which is too low will make people feel hypothyroid.

  • Hi. Eventually I've managed to get the results from the doctors today.

    Tsh- 4.16

    T4 - 20

    Feretin- 64

    Does this shed any info for me at all? X

  • Your doctor doesn't know much about thyroid, does he. He's keeping you sick with his ignorance. Time to take control of your own heath, I think!

    If you've been on 100 mcg for four months, you are well over-due for a blood test. It should have been done six weeks after you increased to 100. As your doctor obviously doesn't know these things, you have to learn them and guide him. Tell him you want the TSH, FT4 and FT3 tested - along with the nutrient tests mentioned by jadzhia above. You probably won't get them all, but at least let him know that you now know what you're taking about, even if he doesn't.

    After the test, ask for a print-out of your results. It is your legal right to have one under the 1998 Data Protection Act. Post them on here - with the ranges - and someone will explain them to you.

    You are obviously under-medicated, or you wouldn't be having all these problems. I expect your doctor is just looking at the TSH, which does go up and down, that's normal. But, you need to know that the TSH is highest in the early morning, and before you've eaten. So, book your test for as close to 8.0 am as you can, fast over-night, and don't take your levo until after the test - leave a gap of 24 hours between your last dose and the test. If the TSH comes back over 1.0, tell your doctor you want an increase in dose.

    Have you ever been told how to take your levo? First thing in the morning, with a large glass of water. Then, wait at least one hour before eating or drinking anything other than water. That will ensure the levo is properly absorbed. :) Are you taking any other medication?

  • Yes. I take it as soon as I get up then wait to eat or drink anything for an hour.

    I've had my bloods done every 8 weeks since nearly beginning of the year.

    I don't think he understands it either!!!

    I'll get a print out on Tuesday to post it. Thank you both for your help.

    Xxx

    Vicki

  • Hi. Eventually I've managed to get the results from the doctors today.

    Tsh- 4.16

    T4 - 20

    Feretin- 64

    Does this shed any info for me at all? X

  • Well, your TSH is much too high, so you are under-medicated. Should be one or under. Don't know about the T4 and ferritin without the ranges. But I think the ferritin is too low. But, even so, those labs aren't enough to tell the whole story. What you need are :

    TSH

    FT4

    FT3

    TPOab

    TgAB

    vit d

    vit B12

    folate

    ferritin

    all with the ranges. Your FT3 is probably low, hence the high TSH. It could be that you're not converting but you won't know that without the FT4 and the FT3 done at the same time.

    As your doctor is floundering around in the dark, it might be better to get your labs done privately. Details of private testing can be found on the TUK main page. :)

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