Migraines

Anyone else have normal labs, low vitamin D, been diagnosed with Hoshimotos, receive no treatment and get severe frequent debilitating migraines??? This a part of the hell of it all? Because I've been feeling kinda at a loss that I'll ever get my quality of life back. No doctor will treat me and I feel like dying almost all the time and the headaches are severe. Functional doctor I found doesn't take insurance and charges 245 for initial consult and 360 for a 6 month phone session type treatment program to teach me how to help symptoms with diet. Is this worth the price??? No doctor I've been to seems to be able to help me. I want my life back, sick of living in fear.

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  • I am sorry you have been left to suffer. Email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse online article by Dr Toft. (ex President of the BTA).

    I cannot remember if it's question 4 or 5 and it refers to antibodies and says that if we have them and have symptoms we should have levo. He gives the recommended dosage to 'nip things in the bud'. Discuss with your GP and ask to be started on levo. Your Thyroid Gland is under attack and even though hashi's waxes and wanes, the less trouble you have the better as you will eventually be hypothyroid. Don't these doctors know anything about the dysfunction of the thyroid gland - it would seem not.

  • Funnygembunni, have you had the cortisol infusion yet? I think it's likely low cortisol and testosterone are why you feel so ill if thyroid labs are normal although high antibodies can make you feel very rough indeed. What's your endo doing about low testosterone?

    Hashimoto's will eventually destroy your thyroid but that may take years to happen. Adopting a gluten-free diet may help reduce Hashi flare ups and reduce antibodies which will prolong the life of your thyroid gland and supplementing selenium may also be helpful for your thyroid.

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

  • Yea I had the ACTH infusion and the labs drawn and all I got from the doctors receptionist was that he said it was normal. I thought since my labs showed < 5 for ACTH that giving me synthetic ACTH to stimulate my adrenals to produce cortisol was silly because it shows that my adrenals can produce cortisol but doesn't give and answer about why my pituitary wasn't or isn't producing any ACTH? Am I crazy? And he said nothing at all about the testosterone levels being low or about treating it at all.

  • Funnygembunni, I know very little about ACTH and cortisol and nothing at all about testosterone. You may want to post a question specifically on them and ask members for advice. Include your results with the lab ref ranges to help members advise.

  • I had normal bloods, upper 4 or 5's for TSH. Was untested for vit d3 and used to suffer very bad headaches, not sure if migraines.

    I was referred to see an endo who did a load of tests. She started me on Levo based on symptoms. 18 months later I was tested for vit d3, it came back at 12, so yes it was low.

    My headaches have all but gone after I had my gallbladder removed, do you get any pain/discomfort on your right side just below your shoulder blade? If so look up gallbladder problems.

    Please get you thyroid antibodies checked, that's what diagnosed me. Just make sure you eat gluten up until testing as it feeds the antibodies. Also make sure you don't just get TPO done, it's generally done because those that have antibodies have this one, 99% do! however you may be the 1% that have other ones instead.

    Hope it helps

  • Well thank you! I've had my TPO checked and was tested for all the other autoimmune disorders and am seriously positive for hoshimotos but none of the others that were tested for :-( all my thyroid labs are normal so my ENDO will not treat me at all and even came out and said that my thyroid isn't causing my symtoms even though I've checked every other body system. He did a thyroid sono and found a small nodule. Then he found that my ACTH was almost 0 and did an infusion lab test where they injected synthetic ACTH to stimulate my adrenals to produce cortisol, which they did, however never cared to figure out why my pituitary isn't making ACTH in the first place. Vitamin D levels have been low for months, taking a chewable supplement. Just always tired, migraines have gotten worse and worse, brain fog and dizziness are a pain. Palpitations and tingling are also a pain. I've attempted gluten free however find it so very hard to stick to, anyone who is successful I could use advice on how to exclusively only eat gluten free. I have to do something because I am sick of always feeling sick.

  • Hi funnygembunni, have you ever had your levels of B12, ferritin and folate tested? These are often low in people with thyroid problems and certainly will make you feel much worse if they are. It might be worth asking to get them checked. Best wishes MariLiz PS Pizotifen tablets taken as a preventative treatment have helped my bad migraines. I still get them from time to time, but they are never as severe.

  • Goodmorning! Yes my B12 level was normal, folate however I don't think was checked. My folic acid was actually over a certain level which I looked up and was considered excessive but never had ferritin levels checked yet. I'm very curious about that level. I think I'll request my PCP does that lab. Strange how I've been telling him what to do this whole time

  • It is possible it's something else causing the migraines, not related to thyroid. I apologise for this sounding like a stupid question, but are you on any meds? Sometimes the most surprising things can trigger migraines. I was put on Lamotrigine (an anti-convulsant) for trigeminal neuralgia. It is also used to treat migraines, ironically, but it actually caused them in me. Epically. I had a migraine for 6 weeks, 24/7, steadily worsening. It caused monstrous pain, light and sound sensitivity, nausea and motion sickness. The neurologist who gave me it was most surprised, because it is a headache treatment, but equally well wasn't in the least bit surprised because drugs are individual in everyone. But the point I'd like to make was that it took me about two weeks to realise that Lamotrigine was what was causing them, just by a process of elimination.

    Have you changed anything, drug-wise, recently? Or even something in the house, like a fabric conditioner, or something you eat? It could be blind-siding you, coming from somewhere you are not considering because you are focused on the thyroid. If you are in bad pain you won't be thinking straight anyway. Maybe a list of everything that's changed recently might help you to spot if something else could be triggering them?

    P.S. I'll also say that sometimes you develop a food sensitivity to something that was previously okay. A pain, but true!

  • I've always had migraines since I can remember, but I'm not on any meds except a low dose of klonopin to keep me calm when I get dizzy and scared. But I've had migraines for a long time they just seem to be becoming worse and more frequent :-(

  • Ah, well then, that sounds more like something longstanding that's not being addressed properly. Could still be diet, of course. Things like coeliac disease can cause migraines and headaches, so if something like that is underlying it they would just be getting worse and worse because you are still eating the food that's making you ill.

    Hope you get to the bottom of it, either way. I know how you feel. There is nothing more debilitating than constant pain. Wears you out faster than that, and other people can't see it so don't know how much distress you are in. Best of luck. X

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