Hypothyroidism + Fibromyalgia + Migraine

Hi All

I've been pretty much bedridden for the last 14 months now & am perhaps at my lowest ebb. No energy whatsoever (exhaustion/fatigue). I'm either permanently sweating or freezing cold to the point of uncontrollable shivering under a duvet with an electric blanket on. If asleep, this shivering can & does wake me up. I don't seem to be able to do more than 4hrs out of bed even on a good day!

I was diagnosed with Hypothyroidism since around 2002/04 (but think I'd had it much longer). I've also been diagnosed with Fibromyalgia (2010), but again think this has been with me for a very long time...! Suffer from severe Migraines (with aura) since 1972/73 (1 to 2 per week / 10days). Chronic reoccurring NPPV (Vertigo) & also suffer from chronic gut issues i.e. IBS, bloating, gas & am now possibly/ likely gluten, lactose & oats intolerant. Always had a good healthy diet, inc proper home cooked meals, but now told I can't eat my lentils, beans etc., & have to follow a FODMAP diet.

I used to be a regular swimmer (2/3 times per week for almost 20yrs) until I became allergic or intolerant to Chlorine & had to give it all up.

I've no faith whatsoever in our NHS / GP service, & don't feel as though I really get any coherent support at all. I'm confused a lot of the time, probably because I also suffer from disturbed sleep (3 / 4 times every night). I've said on umpteen occasions to my GP that this is no way to live, I'm in a state of existence only.

I've not been able to work since 2002 after I failed to recover from major surgery that left me with a great lump feeling in my throat / chest & horrendous gut issues on top of all of the above. I've managed to live off of a very small & meagre private income, but this has now all gone. I'm considering paying privately to have full blood work done re Hypothyroidism as my GP will only put me forward for the basic blood test, which has come back 'normal'! Serum free T4 level 17.4pmol/L & Serum TSH level 0.11mlU/L. I don't know how to understand the results & what they mean for me?

I take 100mg Levothyroxine, 1000mg Hi strength Cod Liver Oil & Sumatriptan 50mg for Migraine (cannot take preventatives for Migraine, as they leave me with a permanent headache). I've requested to try the NDT but been told I can't have it. Also requested to try Lactose free Levothyroxine, which they've agreed to me trialling for just one month only, as it's supposed to cost a lot more than the standard Levothyroxine! Why this would be so, I really don't know & I don't have the energy to ask. If I do ask, I then promptly forget within seconds.

Is there anyone out there that has there wits about them, enough to try & help me out a little?

1. Do you think it worthwhile me getting full blood work up done privately...? Do you know how to get this done if you're housebound & who would be the most cost effective when I've no income?

2. When the results come in, how do I &/or my GP interpret them...?

Sorry for long post & I hope to goodness it kinda makes sense, as having problems keeping eyes open (Migraine & exhaustion).

Many thanks.


Karen Taylor-Brown

7 Replies

  • Hi Karen, so sorry you're feeling so ill, totally sympathise as I suffer from migraines and Hypothyroidism.

    I use Blue Horizon fingerprick blood tests (GP never does anything except TSH)

    The link is homebloodtests.co.uk/epages...

    If you type in code "TUK10" you get a £10 discount.

    Hope this is of some help.

  • There is a slightly more expensive test from the same website given above - the Thyroid Advance Plus Ten - which has some things in it that are important to know for thyroid treatment - it is also done at home with a finger prick test, then must be posted off to the lab :


    It includes T4, TSH, FT4,FT3, THYROGLOBULIN ANTIBODIES, THYROID PEROXIDASE ANTIBODIES. Also Ferritin, Folate, Vitamin B12 and C Reactive Protein.

    The other test that is vital is vitamin D, and this can also be tested with a finger prick test, done at home then posted off to the lab.



  • It's a shame the Blue Horizon Thyroid Plus a Ten Test doesn't

    do the 'active B12' - but great price

  • Hi Karen. 2/3 times a week swimming in chlorinated water for 20 years, that must have depleted you for iodine, since chlorine takes the place of iodine in your body. Could explain at least part of your sad condition. Very important to have this checked through 24 h urine test.

    I'm taking Lugols iodine drops in water. A very well renowned solution.

    I can highly recommend Dr. David Brownsteins book: ' Iodine- why you need it, why you can't live without it'

    Magnesium will probably also be beneficial for you. I just read that 400mg x2/day can make a great difference for migraine sufferes.

    Hope you get well soon!

  • Hi Karen, sorry to hear you are feeling so ill. I suffered from daily migraines for years, none of the preventatives worked for me, I take sumatriptan too. I also suffer from IBS and am following the FODMAP diet, and I wake up 3 or 4 times a night and possibly have fibromyalgia. My TSH and FT4 were similar to yours and I was told everything was fine. It wasn't so eventually I had my FT3 level tested privately (BH) and it was under range. I showed the result to my GP and he referred me to an endo. He prescribed 10mg of T3 in addition to 75mg levo (reduced from 100mg). It hasn't been without problems, I can't tolerate the full 10mg so usually take 7 and a half, but it has helped me. I have slightly more energy, feel less depressed and have fewer migraines and manage to get out of the house sometimes. I am far from well but I am better than I was so it might help you. If you get private tests done, post the results on here with ranges and people will advise you. Good luck x

  • Hi Karen - yes, definately have Free T3 Serem carried out. The Doctors Lab

    do home finger prick tests & as advised previously Blue Horizon. I had

    'normal' TSH & T4 but the active hormone FT3 was below range. For me

    Levo was never going to work. When you get results post on here with

    reference ranges - then we can see how things are. Take a good all round

    multi vitamin & mineral. Have you had an adrenal test i.e. Saliva or Cortisol

    Serem ? The NHS can do an Iron & Ferritin, 9.00a,m. Cortisol, Vit B12

    & Folate, and in the state of health your in, if you haven't had these checked

    then good idea to do so. NHS can arrange blood draw at home via District

    Nurse. Your symptoms sound as though they would resolve with adequate

    treatment of hypo state (not a Doctor - just my opinion). Chin up - things

    do improve when you get on right road to recovery.

  • Hi Karen,

    I have lot of your symptoms, though not so severe. You have my sympathy!

    My blood tests are supposedly "normal", the NHS choosing to ignore 35 years of symptoms. I was lucky enough to get a bottle of WP NDT on ebay, which has helped greatly, especially with feeling cold & skin issues. That's about to run out, & the Thyro-Gold I ordered from the US went missing three weeks ago, somewhere after Chicago. >:(

    I've just written a post to see if I can find out the name of a private consultant to prescribe NDT. Perhaps you can do the same, so you can see if NDT will work for you?

    Aside from that, I've found eating clean food helps reduce my symptoms. I've just started making kefir to get my B12, K2, magnesium, & other vitamin & mineral levels up. There's a lot of good information on Chris Kresser's website about diet & hypothyroidism. I can't go paleo, as he & my GP suggest, as I'm Veggie.

    Hope that helps!


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