Thyroid, vitamins and headaches

I've been taking 100mcg of levo now for about 10 years (was on 75 for 13 years) but have never really felt 'right', despite all my blood tests coming back ok or at least that is what the GP said. He thought I might be 'depressed' (this is a running theme) I upped my dose myself for six months and then confessed to the GP who on checking my bloods said it was ok and to carry on.

About 5 years ago I had a bereavement that I didn't deal with very well and was signed off work for 5 weeks whilst they sorted out AD medication. After counselling and other lifestyle exercises I came off the AD as I felt dreadful and even more zonked than normal.

A year or two ago I went back and said I was still struggling with energy, aches and pains and one GP suggested I alternate from 100 to 125 but they wanted to double check my bloods. Cue an endless round of bloods - ESR was elevated and I had a Vitamin D deficiency. They did suggest I was depressed (as previously) but I insisted I wasn't. However they did say that I was to stay on 100 now.

Then had a run of bad health - first bowel problems which meant a CT, colonoscopy and eventually banding. Then I started having vertigo symptoms which lasted about 2 months and then a myriad of headaches since then (3-4 months now) - I've suffered with migraines since a teenager and this was controlled fairly well with sumatriptan, although the dose has increased over time. However, these were a combination of types of headache, including the usual migraine which is now longer as controlled plus tension headaches, which has the GP stumped. I have private physio on my neck to try and release tension which does help for a bit but it getting rather expensive, plus have given acupuncture a go. There is a family history of strokes in my family but cholesterol, heart rate and blood pressure are perfect, and actually on the low side. The GP asked if I was worried it was something serious but as I told her I only really worry about having a stroke not anything insidious in my brain ;)

I'm due to see a GPwSI who specialises in headaches early in September to try and see if they can find a reason/treatment plan.

I've requested copies of my previous blood test results yesterday (apparently they have to ask the GP if I'm allowed to have them!) but just wondering if anyone had suggestions for next steps? Considering I was diagnosed in my early 20s I'm still a bit clueless about it all

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  • 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 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 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 this test, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) don't take Levo 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.

    Assume you know that Levo generally should be taken on empty stomach and no food or drink for at least hour after. Many take on waking, some prefer bedtime, either as more convenient or perhaps more effective. No other medications at same time, especially iron or magnesium, these must be at least 4 hours away

    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 and gluten connection to autoimmune Hashimoto's too.

    Vertigo could be due to low B12

    vitamindcouncil.org/tag/aut...

  • Are your migraines hormonal? Mine were (every 14 days approx - period and ovulation)

    I took levo for a year and my migraines went from 7 day duration to 3-4 days. They also weren't as bad (pre levo iwould vomit every 20 mins for about 4-6 hours on the first day but with levo just a couple of times.

    I also found with sumatripan that I got bounce back migraines ie migraine would stop for a day or so then come back with a vengeance so I only took it when I absolutely had to and survived on alternating paracetamol with codeine and naproxen; still bad but it takes the edge off them.

    But; I changed to ndt after a year (because I have Dio2 gene snp) and my hormonal migraines stopped within 3 months of taking it. I get what I would term 'a bit of a headache) for about 4 hours once a month, no light show and no vomiting.

    Not saying ndt is the answer for everyone but it has worked for me

    Good luck

  • Forgot to say, I had hormonal migraines as a teenager but then spent 20 years without a hormonal migraine (just the odd port and Stilton one). They started again about a year before I went to the quacks with my other hypo symptoms and got progressively worse over the next 6.5 years until I was finally diagnosed

    Given they reduced and went when I was treated adequately I am convinced that they were a thyroid symptom

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