Thyroid probs or something else??

Hi all, I'm new to this site, i have an under active thyroid probably since I was a teen I'm 33 now got diagnosed 5 years ago and currently taking 100mg of levothyroixine. I've recently been to the GP due to having achy legs with pins and needles and its goes on all night and I'm not sleeping either. I forgot (which is nothing unusual) to mention that I feel like I'm carrying someone around on my shoulders they hurt so much. I'm having full bloods done on Wednesday. I just feel heavy all over when I'm walking around it's such a horrible feeling closely matched with tiredness 😩 But it's not like it's only just started I've been like this for months but trying to get an appointment is hard plus fitting it in with my kiddies even harder it's takes me about an hour to get out of bed and get down to the couch then another hour before I can stand up to begin breakfast ect 😩 Does anyone else feel like this? Or is it me? Is it thyroid related or not? I'm sure GP thinks I'm being OTT!! Thanks for reading/listening

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6 Replies

  • No little_sarah not just you. It sounds very much like vitamin and mineral deficiencies and maybe not being optimally medicated with your thyroid meds. When you go for your blood tests, ask for B12, Vit D, ferritin and folate to be tested also. You our answer may very well lie there. Low B12 - pins and needles, low Vit D - aches and pains, low ferritin - fatigue. If your surgery won't do them we can tell you where to get them done privately.

    Come back with all your results, post them in a new thread, with reference ranges, and members can comment.

  • Hi thanks for the reply b12,folate and ferritin are all on my blood form. I'm scared to sit down as I'm always falling asleep!!

  • When you get your bloods done on Wednesday, the advice on any thyroid tests, is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

    Suggest, if not being checked already, you ask GP to test for levels of vitamin d, b12, folate and ferratin. These all need to at very good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells.

    (Achy legs - possibly low vitamin D, pins & needles possibly low B12. Poor sleep possibly low Vit D & all the B's)

    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. NHS rarely checks TPO and almost never checks TG. (NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.)

    Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online

    When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

    If you can not get GP to do these tests, then like many of us, you can get them done privately

    Blue Horizon - Thyroid plus eleven tests all these.

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

    Assume you know that Levo generally should be taken on empty stomach and no food or drink for at least hour after. Many take on waking, some prefer bedtime, either as more convenient or perhaps more effective. No other medications at same time, especially HRT, iron or magnesium, these must be at least 4 hours away

    Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this.

    You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's too.

  • Thank you so much for all your advice I was told I had to be on iron forever as my hb dropped to 5.1 after the birth of my last child who is now 4. They should have given me a blood transfusion like they do when you dip below 8 but because I was coping they left me and gave me iron tablets. Once my hb became in range I was told I no longer needed the iron.

    On my blood form for Wednesday it shows B12, ferritin, renal profile, bone profile, serum folate, thyroid function test, full blood count and liver function tests.

    I take my levo on empty stomach first thing and don't have nothing for at least 2 hours as it takes me that long to start to function to move.

    My GP is never helpful so I'm guessing I'll have to do the tests myself but I'll see what comes from this test and I'll get a print out of previous tests so I can compare and get more advice. Thanks

  • Good - just Vit D and thyroid antibodies missing

    You could just get your Vit d tested via city assay - £28 - postal test - very simple - see Thyroid Uk page for more info

    You could ask your GP at your next appointment if your thyroid antibodies have ever been tested. If they haven't get them done at next test in few weeks time.

  • Will do that thanks 😊

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