under active thyroid and migraine

Hi can anyone give me any advice, been on thyroxine for 15 -20 years never felt well, had cluster migraines as well, I am beginning too feel that the thyroxine is giving me the migraines is this possible? I am on 175 mg and 150 mg thyroxine alterate days, migraines nothing works, I have taken lots different things beta blockers, antidepressants, can I get too see somebody who can help both illnesses, my THS levels are always elevated but everything else is normal, the last lot of antidepressants make me feel like dieing never felt so helpless, my doctors will not give me injections for migraines as all the medication is too expensive, can I pay too see a consultant and get myself sorted, also can I get vitamin/mineral tests private where can I go? any help much appreciated,

21 Replies

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  • Hi hattiehound - I think it is likely that under-treated hypothyroidism is giving you the headaches, although it could be the thyroxine too. Please could you post your latest thyroid test results (TSH, FT3 and FT4 - if you have them all) on here together with the ranges (these need to come from your own report as they vary by lab).

    Perhaps you could also look a the list of symptoms on the attached link and see if you have any others:

    thyroiduk.org.uk/tuk/about_...

    Thanks,

    Clare xx

  • Elevated TSH with 'normal' everything else is absolutely not acceptible for someone already on long term thyroid hormone replacement. I would be getting headaches and umpteen other symptoms if my test results consistently showed an elevated TSH.

    As Clarebear says, please obtain your actual test results and post them here for members to see and comment on. It may be that your dose of thyroxine needs adjusting.

    Also, consider whether the way you take your thyroxine may be contributing to the problem. It needs to be taken only with water, at least 30mins, preferably one hour before any other food or drink. Some people find taking it at night (two hours after eating) works better for them. There are also certain supplements and medications that should not be taken at the same time as thyroxine. Iron, calcium and indigestion / acid reflux remedies are examples of supplements that need to be taken well away from thyroxine (as in several hours).

  • thank you, I have asked my doctors receptionist before but she talked me out of having a copy, I didn't want too have an argument its difficult just getting thyroxine the last 3 prescriptions were wrong? do I have the right too get a copy of my blood results? as my doctors aren't helpful they treat you like an inconvenience, I was once told by a doctor that nobody ever dies from migraines but I explained that I have no quality of life I feel like I am going mad with the pain, my doctors say that there is only one treatment for an underactive thyroid that is thyroxine and that their are no side effects, I usually take my thyroxine with my breakfast so probably not helping myself there , will start taking them as you suggest, thank you so much for your help was beginning too think i was mad. regards karen

  • There are alternatives to thyroxine but your doctor may not be aware of them. Thyroxine is synthetic T4 and has to be converted in the body to the active hormone T3. Some people don't seem to be able to process T4 into T3 very well, so they benefit from taking some direct T3 or Liothyronine. There is also Natural Dessicated Thyroid (NDT) which is made from pig thyroids and contains both natural T4 and T3. I am taking this and am feeling much better, but most doctors are reluctant to prescribe it, although some do prescribe synthetic T3, especially endos.

    Yes you are entitled to a printout of your results - as my GP says they are mine. I believe they can charge you a small amount for the paper and ink etc. but my done charge anything.

    You are definitely not going mad - there are many people in your situation as doctors unfortunately don't seem to understand hypothyroidism very well.

    Please go back and try again to get a print out of your results and then post them on here. I am sure lots of people will be able to comment and offer you helpful suggestions. Good luck xx

  • Indeed you are most definitely entitled to get details of your test results. This info on the main Thyroid UK website explains things

    thyroiduk.org.uk/tuk/NHS_In...

    If you follow my suggestion for how and when you take your thyroxine, in time, you may start to feel a significant improvement, as you will actually be effectively getting a dose increase by doing this. Let us know how it goes!

  • Can you explain what you meant by it being difficult to get thyroxine, and the last three prescriptions being wrong? This should not be the way of things at all. Thyroid hormone replacement is essential medication for all diagnosed with hypothyroidism and it shouldn't be a fight to get the medication you need.

  • You may want to inform your doctor that " nobody dies of migraine " the suicide level is very high !! I can sympathize with you I have been a cluster migraine sufferer for years , it's a loney place . I am hypo taking levothyroxine and vitamin d and b12 and at the present have had 2 great weeks ?? . Wishing you all the luck in feeling better xx

  • Hi hattiehound

    What a poxy Doctor to say nobody dies from migraine. As an almost lifelong sufferer I can sympathise. It is such a debilitating condition. It seems to wax and wane? I have heard that Magnesium can help but I have never tried it

    Betty x

  • Hi, hattiehound, how about joining thyroiduk.org if you are not already a member? No, I don't get commission on the deal! But on site there is invaluable info about private lab testing with discounts for Thyroid Uk members.

    There is also info about drugs and chemicals that reduce the effect of therapeutic thyroid hormone doses. Try this link for starters. you will find on it that beta blockers are not good among other things. Quite an eye-opener!

    thyroiduk.org.uk/tuk/treatm...

  • Thanks for the plug! :-)

    Just a small correction - the tests are available to anyone mentioning thyroid UK! :-) You don't have to be a member.

    We already get a small commission from the testing companies - it would be wrong to make people sign up to TUK too!

    Louise

    x

    :-)

  • Thanks, hadn't appreciated that these tests are available to anyone just by mentioning TUK, but surely the discounts are only available to TUK members??

  • No, the discounts are for everyone, just by mentioning Thyroid UK. :-)

    Members get other benefits, such as free webinars and discounts for supplements.

    Louise

    x

  • Hi As well as all the above good advice. migraine, can suddenly start and hormones do have a lot to do with it. It is also an auto immune disease, so if you have one ( eg thyroid) ,it is common to develop others.

    Best wishes,

    Jackie

  • Hi I have just been reading

    dr Mercolas site and it seems that low magnesium can give migraine headaches. So supplementing with that might help.

    Jo xx

  • I have today got my results for the last test, tsh level 8.3 t4 17 serum folate is low? 4.6 which is under the 5.4 lower limit, the doctors told me the tests were normal? I then asked too be increased as I felt so bad, but I am on antipressants for migraines. but they aren't working unfortunately and I had a migraine friday with no aura so can't medicate, today I have had too pay for a private prescription for migraine injection, at £60 although boots say they had the refills as somebody else in my surgery gets them every month on regular order, they aren't paying so he said I should question this? why is everything such a fight? thanks for all the answers it shows that somebody cares, I have asked if I can see a specialist privately but nobody has rung me back, any advice on where is good just think if they get the levels right I will get no migraines

  • Please hattiehound, do post your results quoting the specific test, the result and also please the reference range, which is right after the result.

    Your TSH at 8.3 seems high, those on levothyroxine should have a TSH at 1 or less. If the folate is as low as 4.6 and the lowest ref range limit is indeed 5.4 then your doctor should not be describing these results as normal, they are not. Nevertheless you should not simply be prescribed folate to bring the level up, your B12 level must be tested, along with folate and ferritin then you can quote the result plus the ref range here and somebody will help you.

  • Thanks for posting the results but to really understand we need the range for the FT4. Please could you get hold of that and post it on here? Without that range and just going on TSH alone i would think that you are most probably very under medicated and need your thyroxine increased, even if your FT4 is in range. I have personally found that when my FT3 and FT4 are lowish in range, I feel awful with headaches and tingling. Xx

  • the last test which is where the tsh levels were elevated the t4 levels are 17 pmol so normal, today another test I did last week has come back as tsh 5.3 so normal and t4 19.7 so normal they don't test for TH3, but I still feel sick, dizzy, but then the migraines aren't helping. I feel that they are caused by the thyroid but my doctor isn't convinced but may be prepared too try something else but apparently its expensive and they only have one other patient on it so he needs too check how they managed too get it? I am too ring back later in the week and he will explain? apparently its another type of hormone as well, fingers crossed perhaps this doctor is the answer too my prays

  • I wonder if he means to give you a trial of T3? If so that would be really good but ideally you would need a FT3 test before starting it as a base point. If your thyroxine isn't converting very well to T3 then this could cause all of the symptoms you describe and a high TSH :) Fingers crossed for you xx

  • Hi hattiehound. I'm so sorry to hear you're not feeling well, and also sorry to hear your doctor has been so unhelpful and unsympathetic. The first migraine I ever had was the worst pain I had ever experienced (it knocked the pain of an infected root canal into a cocked hat).

    Not related to thyroid, but the last two times I had a migraine (I've only ever had a handful) dehydration played a role. I'm sure you've taken everything into consideration but I thought I'd just mention this in case it helps. Good luck.

  • Hello Hattiehound,

    I am going through exactly the same thing as you at the moment. Upon advice from those on Thyroid UK I eventually changed my GP and immediately she did explain that she would need to have new test results in order to treat me. My cluster migrains returned with a vengeance when I was prescribed Levothyroxine but. My old GP told me that he would not retest thryoid levels for a year - so not until next March. He had given me a prescription for Propananol and told me to get on with it. I was utterly exhausted and the headaches were so bad.

    My T4? level came back at 7.8 and my Levothyroxine has been increased from 75 to 125 mcgs.

    I have an appointment for retesting in January and my new GP will decide what course of action to take with the Propananol then depending on the results. She thinks the severe auaral migraines may have been occuring due to incorrect medication and have to say that since the Levo has been increased I have had fewer migraines. I don't feel any more energetic or well but thank God the migraines have subsided a lot. Have not been given any results and only been diagnosed 14 months ago so not

    Will let you know what happens in January.

    Have never heared before of an illness where people have to fight tooth and nail for treatment - why is this so? Have read all your other replies and have gleaned any advice that I think I may benefit from too. Thank you one and all.

    Good luck and wishing everyone a very Happy Christmas.

    xx

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