A doctor actually listened to me! Shame it's not the doc i need though

Saw Neurologist yesterday and she has ordered MRI (which she thinks will be clear) is refering me to another Endo, wants to see me in 6 weeks and said I need to be strictly monitered. The MRI is for ,y memory loss and confusion but she things it will be clear and my issues are Hashimotos related. I've been having lot of trouble breathing lately and I keep going toilet like 4 times a day which is very very unusual for me and everytime I go it's covered in white bits, sometimes yellow stuff and now sometimes black stuff. Had loads of bloods few days ago and also got to have two stool tests to check of blood and to see if I have bowel disease. Two docs I saw think bowel problems are hashimotos related and neuro also said I have neuropathy.

Question though, even with bloods normal and on meds can you really still really suffer like me? I know docs said yes but want other opinions from you guys.

11 Replies

  • Yes, I think you can. My own views: depends if the thyroid hormones suit you: normal ranges doesn't always mean the patient feels well and in good health: many patients only feel well if they have a low or suppressed TSH: many doctors don't provide sufficient hormones and are happy if patient's blood tests are 'normal' despite continuing or new clinical symptoms. This is a link from Dr Lowe's archived website which is self-explanatory.


    I am glad all of the experts you've seen believe your condition is connected to your hashimotos.

  • Hypo101, I had 'normal' bloods on various doses of Levothyroxine, TSH varying from undetectable to suppressed, FT4 34 to 15 and FT3 over range to under range. Slight improvement when FT4 dropped into range but I felt like I was dying most of the time and stuggled to breathe. Transpired I wasn't tolerating Levothyroxine only. After clearing a build up of T4 over 3 months, adding T3 to T4 had a calming effect and maintained good FT3 levels.

    Have you had a coeliac screen to rule out gluten intolerance? You need to keep eating gluten if you are having a coeliac screen as results will be skewed negative otherwise. As you have Hashi's it may be worth adopting a 100% gluten-free diet anyway. Many members find it helpful in managing Hashi and reducing antibodies. Memory and confusion can be due to low B12. Has it been checked?

  • One of the bloods I had other day was to check B12. Waiting for results but last time I had quite a few months ago showed it to be 242 which is very low but doc said it's fine. Should of bought that up with neuro but didn't think.

    Not sure on Coeliac. I have been trying to cut gluten but it's been difficult. I was doing ok til last week when I had something with Gluten in it. I went away for weekend with youth group as a leader and the menu there for gluten people was just awful so I had to cave in.

  • Hypo, B12 <500 can cause neuropathy. PAS say 1,000 is optimal. Try 5,000mcg methylcobalamin sublingual lozenges, spray or patches for 12 weeks to boost levels. You can probably reduce to 1,000mcg after but up it if symptoms become worse.

  • Can someone pm me their sources of methlycobalamin please

  • RFU, it's available on Amazon and iherb.com and probably available in healthfood stores. If you use Amazon please use the TUK affiliate link thyroiduk.org.uk/tuk/go_sho...

  • Yeah, you can get it on the high street. (Depending on your high street, of course). But in London I have three shops selling it withing walking distance. Solgar sell it, so anyone selling that range may have it.

  • Your B12 was low Hypo101 and symptoms you describe (memory loss, breathing problems etc) are neurological symptoms. ("Deficiencies begin to appear in the cerebral spinal fluid below below 550 pg/ml" - 'Could it be B12?' ). It is essential that you receive injections without delay as there is a short window of opportunity before neurological symptoms become irreversible.

    Thyroid disease and B12 deficiency are often linked two ways and symptoms overlap but I hope this extract from the BCSH guidelines will help persuade your GP to take your symptoms seriously as very few have read the latest BCSH and UKNEQAS guidelines on B12 deficiency,

    "The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

    There is also a debate going on in the House of Lords:

    "To ask Her Majesty’s Government what action they are taking to address the problems associated with the late diagnosis of pernicious anaemia, in the light of the results of the survey published in the British Nursing Journal in April 2014.

    To ask Her Majesty’s Government how they propose to alert medical practitioners to the severe and irreversible nerve damage that can occur when pernicious anaemia is misdiagnosed.

    Countess of Mar - Crossbench"


    Other links:

    b12deficiency.info/films (templates on this site for writing to your doctor)

    The latest BMJ research document with useful summary:


  • Dear,

    I have Hashimoto's thyroiditis. IT IS A BEAST and definitely affects my memory and thinking, because I'm not getting enough T3 thyroid hormone to the brain. Maybe you have Hashimoto's?

    I have had it for 14 years, and REALLY struggled the past year. When one's memory is affected, that is a sign that NOT ENOUGH T3 thyroid is getting to the brain. That can be caused by either a T4/T3 conversion issue and/or problems with the T3 being distributed adequately in the body (which can be caused by low sex hormones levels, hormone imbalance, gut bacteria problems, too much or too little cortisol, lack of protein, gluten in the diet, sugar in the diet - all of the preceding and even others.)

    Please know that you are not alone!! All brain/thinking-related problems are rooted in something going wrong in other parts of the body.

    My prayers go out to you.

    Ms. Klagh

  • Now I'm getting tingling all over my body right now even the penis. Really starting to get scared now that I will never get well again :(

  • Had another thyroid anti body test and it's gone up to 113 from 54.

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