HELP! On T3 only and struggling massively with fibro pain!!!!!

I have been on T3 only since January this year after being on levothyroxine for 25 years and then armour .... neither of which touched my main symptoms of all over body pain, weariness, lethargy, brain fog and constipation.

I am now on 62.5mcg of T3, nutritional and mineral supplements, fish oil, vit d and c, selenium, magnesium and zinc and NOTHING IS HELPING>

I'm feeling very desperate tonight as the body pain (fibromyalgia) is about as bad as its ever been. Painkillers don't help and I can't sleep because I'm in so much pain.

Any ideas anyone???

XXX

16 Replies

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  • Fierysue, you poor thing. The only thing I can suggest is a hot bath with some Epsom Salts and lavender essential oil if you have any. Also a magnesium supplement may help. I am just about to have my bedtime drink of Natural Vitality Magnesium Supreme. It is a lovely drink which helps me to sleep but is also good for nerve and muscle function, hormonal health and good for bones and teeth too. Magnesium is depleted in many patients with fibromyalgia and chronic fatigue and NHS blood tests are not adequate to test for levels within the cells. The test should be intracellular.

    I know magnesium won't help tonight, but it may be worth getting some (I get mine online) to drink each night before bed. It will also help alleviate your constipation.

    Epson Salts are of course Magnesium Sulphate so sitting in the bath with them may help too.

    I usually buy mine from the garden centre, but the last lot I got are supposedly for veterinary use - all the same stuff though.

    I hope you can get to sleep soon and rest well.

    Jane x x

  • Hi janeb!

    Thank you for your reply.

    Never thought of an Epsom salts bath - I'll definitely try that.

    Could you private message me as to where you get your magnesium supplement from online.

    Brenda xx

  • fierysue, have you ever been tested for vitamin B12? a low b12 level can also aggravate this situation by the way.

    Is there any way you can ask for an increase in T3? (don't know if you are 'eligible' for it, ie: whether you are on enough medication or not), if you don't have any over-medication signs/symptoms and/or any health reason why this would be contra-indicated it may be worth looking into it.

    Maybe our admin Shaw will see your post and she will post some links to Dr John Lowe (RIP), he treated many many people with fibromyalgia, often well on T3 only and with higher doses than other people would take.

    I hope you got some sleep last night :(

  • Hi nobody's driving!

    Thank you for your reply and advice. I did get snatches of sleep last night but not much as pain and excessive night time urination kept me awake!

    I actually go for a Vitamin B12 test this week. I am supplementing on a general B complex already so when should I stop taking that before the blood test?

    In terms of an increase in T3 I am 'self medicating' with the support of my GP (just) He is willing to write me up for tests but not give me T3 above a minimum dose of 20mcg daily which clearly isn't enough for me so I buy my own.

    I am taking 62.5mcg once daily in a morning as I read this on Dr John Lowe's site. It's unfortunate for us fibro sufferers that he's not still around as a lot of information doesn't seem to be available any more.

    I have only been on this dose for about 10 days after increasing it from 10mcg daily since January. Any advice on how long I should leave it between each increase? My GP has no idea!!

    Many thanks for your support xxx

  • Are you optimised on T3? There's a school of thought that treatment should be optimised to resolution of symptoms (and no side effects) but its scary for many docs as it raises other levels significantly (like TSH and T4) and they don't know what to do about it (nothing!). Lab results are used as a guide and if you think of the average mean results- it means its an average of both end of the scale: all normal for different people- you might just require more than someone else.

    Have you also thought about food intolerances and sensitivities? Tons of books online- good lab services around- tolerances can also change over time (ie some die down, new ones appear), so if you haven't checked in a few years- could also be something to look at- elimination diet is the way to go after a test.

    All the best and I hope you find a solution.

  • Thank you drhb!

    I don't think I am optimised on T3 yet as I still have a lot of symptoms. My GP is supportive but not got a lot of idea so I'm working in the dark a lot and trying to research things for myself. I take my 62.5mcg all at once in a morning as advised by the late John Lowe. I'm not sure what level of T3 I can go up to as I also read that people over 50 yrs shouldn't go above 60mcg.

    I have always had sensitivities to citrus fruit and blue cheese (which I love) but haven't done any tests over recent years so I'll give that some serious consideration. Also considering improving my diet by more whole foods e.t.c.

    Many thanks xxx

  • Actually, drhb, taking T3 only lowers TSH and T4, it doesn't raise it. And when your TSH is suppressed they are convinced that you're going to drop dead of a heart attack at any minute or your bones are going to disintigrate on the spot. All rubbish, of course. lol

    Hugs, Grey

  • Read Neil Rouzier's book. He's by far one of the best on bioidentical HRT- that's all hormones, not only oestrogen- has tremendous experience in thyroid and assc finromyalgia and has been taught by his patients (ie willing to listen and trust their judgement, hence figuring out the best way to treat them)- lectures out of passion- not for the money. The over 50yrs- I disagree (professionally), medical evidence galore out there that doesn't support it- but the average GP probably won't risk it. Is your T3 bioidentical or is it synthetic- that could also have something to do with it. Smaller things but huge significance- change to coconut oil, butter, ghee and olive oil- avoid industrial oils- saturated are in a form your body is able to use- Do read Oiling America or about Mary Enig- another controversial figure. Sometimes you may be taking all neccessary supplements but if your diet is not right- your body may not be able to take in the nutrients- one reason why fat is so important as it forms the membrane of cells and the wrong fat causes reactions and prevents proper utilisation of nutrients. Look at Weston Price foundation as well. Interesting blogs are Stephan Guyenet and Chris Kressler. I will stop here : )

    Sincerely hope you get better.

  • This is a link re T3 and at the top of the page there are topics - Thyroid Resistance and fibromyalgia. Dr Lowe has said that nowadays we get prescribed too low a dose - previously it used to be between 200mcg to 400mcg.

    web.archive.org/web/2010122...

  • Thank you shaws - all information is so useful when we are trying to find our way through this minefield that is thyroid! xx

  • Hi fierysue

    I have some similarities with yourself and am still on The Journey !

    I am now much much better.

    My fibro like symptoms had become scary by January with my husband calling me Mrs Overall in the evenings. Having been very ill with reactive rheumatoid symptoms in the past after an iron infusion - I didnt want to go that route again.

    I have been on T3 only since Octoberish last year and am building up from 30mcg NHS approved - now on 40 - 45 mcg daily( my decision ) . I too am over 50.

    I take T3 early am when I first wake e.g. today 20mcg @ 5:30am - 15mcg at 11:30am and am trying between 10 and 15 about 17:30pm.

    I am now taking NAX x 1, NA x 2, Vit D (NHS advised) and Vit B12 in the morning . Vit C and Ferrous gluconate (NHS advised) with evening meal. I try to eat a small amount of fat with my Vit D to help absorption - have to be careful as i have gallstones.

    The Vit B12 was last to be added to my regime , and am next going to compare this with a Vit B complex.

    I am indulging in private physio - 6 treatments so far which include acupuncture / solar treatment / heat packs and massage - now we've added in some basic pilates.

    I actually slept through last night and was able to have a lie in without pain hurrah - 2 solpadeine yesterday and hadn't had any for a couple of weeks before that :-)

    Good Luck X

    .

  • That's great news that you are improving!

    I think I would struggle with anybody touching me at the moment -it hurts for me to touch me!!!

    I'm going for a Vit B12 and folate test next week so I'll see what that brings.

    Could I ask .... what is NAX and NA?

    Many thanks for your advice

    XXXXX

  • Poor you ! My Mum could feel like that too !

    Mine isn't that bad, although after I had my son 28 years ago I was ! It seemed to be caused by an autoimmune reaction to a post natal iron infusion.

    NAX is Nutri Adrenal Extra and NA is Nutri Adrenal both from Nutri. I was advised to take these by Dr P.

    My NHS test said my B12 is OK but my homeopath who uses vega testing to check for deficiency's said I need to up my B12. The private physio said a complex may help with absorption.

    Low iron - my ferritin had dropped to 5 ( 90 would be good according to the endo) can be a significant factor in joint muscle pain and si also linked to B12 problems.

    I am waiting for the book The Forgotten Disease by Martyn Hooper to read more about iron and B12.

    Happy fcat finding and hope you find some good answers. X

  • Hi!

    Thanks for the information. I'm going to push my GP about ferritin as I can see it may be quite crucial in dealing with some of this pain, xxxx

  • Hi Sue I do wonder whether it has been the low iron which has stopped me from converting T4 but at the moment am reluctant to test this idea. - My haemoglobin etc has always been low but in range so they didn't pay attention to ferritin.

    happy Maundy Thursday brrr ! X

  • I don't convert T4 so that's why I'm on T3 only. I used to be in so much joint and muscle pain on it .... and it got worse each time they increased it ... and silly me kept putting up with it! Thank goodness for this forum where we can look at things ourselves and make our own judgements!

    Happy Easter! We're due snow here again tomorrow YUK! xx

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