Feeling desperate

Hi. I'm new to the community, but have been taking Levothyroxine for about fifteen years. For nearly a year now I have been suffering acute pain in my arms and legs - and almost anywhere else in my body, together with 'brain fog' and anxiety. I have had MRI scans, physiotherapy, consultations with Rheumatologists, but they have found nothing. My GP has mentioned Fibromyalgia and this is when I found the link to thyroid online. My GP won't test for T3 and more or less says that I have to live with the pain. I'm at the end of my tether - it's affecting every aspect of my life, work, relationship and we may even lose our home.

I've read about Armour and similar, and am wondering whether to buy online (from abroad) and self-medicate to see if it will help.

What do others think about this. Good or bad idea? Or should I try to find a GP or specialist who will listen?

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  • Hi Ademanda and welcome. I think the first thing you should do is get a copy of your test results from the surgery. It could be that you are just under medicated, or that your vitamins and minerals aren't optimal. So ask your surgery for a print out of your results, you are legally entitled to them under the Data Protection Act 1998 and they must give them to you but may make a small charge for printing.

    As your GP hasn't tested for FT3, (which is not unusual and it's the lab that usually makes the decision anyway and usually won't do it unless there's something drastically wrong with TSH or FT4) then it would be a good idea to have a private test done. You can get all thyroid tests including antibodies and FT3, plus all important vitamins and minerals with a fingerprick test from Blue Horizon bluehorizonmedicals.co.uk/T... and I think you would be well advised to do it.

    Once you've got those results, make a new thread with the results with reference ranges and members can comment. If you have any deficiencies suggestions can be made for supplementing. If your thyroid levels are low suggestions can be made for a dose change, or even whether changing to natural dessicated thyroid or adding T3 to your Levo would be best. You can't really just change to Armour (the most expensive form of NDT and requires a prescription) without knowing your levels.

  • Thank you SeasideSusie - very helpful. My GP recently upped my dose of Levo to 225mcg per day (I was on 200 for four years) in response to my questioning the link between my pain and my thyroid condition. She then asked me to get a blood test done in four weeks (now two weeks away) and I'll see what the results are from that (though I'm not sure she has requested any of the other tests you mentioned. I think I may go down the route of getting the fingerpick test done by bluehorizonmedials and post the results on here. Do you know how much the test costs and if it covers all the tests I will need?

  • If you check the link I gave you it tells you exactly what is tested (which Slow Dragon has put in her reply) and the cost, which is £99. You order the test either by email or phone, it arrives within a couple of days with detailed instructions of how to do it, and you get the results within a couple of days of returning it.

  • Welcome. You will find plenty of help on here.....and many stories like yours..... read as much as you can.

    Most people on levo need a low TSH, around (or even slightly below) 1 to be adequately treated. Do you have your latest blood test results, plus ranges (figures in brackets after each result)

    If they have not been done ......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 do you know if you 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

    thyroiduk.org.uk/tuk/testin...

    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.

    Usual advice on ALL thyroid tests, (home one or on NHS) 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

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

    You do not need to have ANY obvious gut issues, to still have poor nutrient absorption, low stomach acid or gluten intolerance

    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 (& Grave's) too.

    hypothyroidmom.com/92-of-ha...

    vitamindcouncil.org/tag/aut...

    drgominak.com/vitamin-d-hor...

    chriskresser.com/the-gluten...

  • Hi SlowDragon, and many thanks for your very informative reply to my initial post. As I replied to SeasideSusie, I think I will try to get the test done privately and go from there.

  • If you go ahead with a finger prick private test, some suggestions for getting the most accurate results :

    1) Do the finger prick on Monday - Thursday and post the blood back to the lab the same day you produce it. This is to make sure that the Post Office is open to take the package and the lab is open to receive it. It is recommended that you post the sample back paying for "Guaranteed next day delivery by 1pm".

    2)Do the finger prick no later than 9am, better still do it between 7am and 8am.

    3) If you normally take your Levo in the morning take it the day before the test as early as possible. On the day you do the finger prick delay taking Levo until after you've done the finger pricking.

    4) If you normally take Levo in the evening, the day before the blood collection take levo first thing in the morning instead of the evening. On the day of the blood collection take levo in the evening as usual. (This is so the gap between levo dose and blood collection is 24 hours.)

    5) You might want to stop iron supplements for 5 - 7 days before the blood draw, so that your ferritin (iron stores) test result doesn't measure what iron is in your supplements rather than what iron is in you. At the very least you should stop for 24 hours.

    6) From about 10pm the night before the finger prick, don't eat, and don't drink anything except water until after you have your blood sample.

    7) Package up your samples, then take the blood to the Post Office and ask for Guaranteed next day delivery before 1pm.

    8) Results are sent via email.

    A useful document : bluehorizonmedicals.co.uk/W...

  • That's great - thank you so much ☺️

  • I've just changed number 4. My previous suggestion wasn't great, it left too long a gap.

  • Hi Ademanda, welcome to the forum.

    If you are taking 225 mcg levo, and not feeling any better, then there are two possible causes.

    a) You are not absorbing your levo correctly. This happens a lot, because hypos often have low stomach acid, which affects digestion and absorption of food and medication. A full blood test, such as you get with the Blue Horizon +11, will show that up, because your FT4 will be low, and so will your nutrients.

    b) You are not converting your T4 (levo), which is a storage hormone, into the active hormone, T3. But, you need the FT4 and FT3 tested at the same time to know that. So, once again, the Blue Horizon test will reveal all.

    Until we know the results, there's not much we can advise you to do, though. :(

  • Thanks greygoose - I'm definitely going to get the test done. Will post the results in here next week

  • Agree with gg and give a remark: the usual tests tell the situation in your blood but not in your cells!

    DIO2 or transporter or receptor mutations?

    The seldom used T3 in 24h is the "bullet-proof" indication

  • Amanda,

    If you have Fibro or M.E. misdiagnosed as Fibro that could cause separate issues that would masquerade as hypothyroid symptoms.

    People with those illnesses frequently have issues converting T4 to T3. They also have more frequently reversed T3 (malformed T3 that blocks TTY h we good stuff).

    I would be inclined to think the thyroid profile including reverse T3 would be better.

    Conversion of T3 from T4 requires good mineral status, are there any foods you can crave?

    Brian

  • Hi Leoopard. Does that mean that the fingerprick test wouldn't show reverse T3? How do I get checked for that?

    Don't particularly crave any foods that I have noticed.

  • The reverse T3 needs a blood draw. Will pm a link.

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