Trying to understand Hashimotos and related health problems

Hi - I'm new here and trying to understand what may be going on with my health. I am a 64 year old woman and was diagnosed hypothyroid 10 years ago. I have been taking 150 mcg Levothyroxine (with a couple of 125mcg days a week) for some years. I guess I have Hashimotos as my symptoms seemed classic - a frantic speeding up of my mind and body for several months when I seemed to be hypomanic (not a phrase in current use I know) followed by a crash that left me too exhausted for normal life, blood tests, diagnosis and a slow increase in Levothyroxine over a couple of years. Over the years since I have been told by my GP consistently that I was slightly over-medicated hence my agreement to drop down my dose a few days a week. I had a very stressful and busy job and felt I couldn't manage on less than 150. I'm now retired.

Over time I have developed a number of complaints/conditions which I think may be linked to my condition including: upper arm and shoulder pain which is chronic; carpel tunnel syndrome; and this year, lichen sclerosis and problems with my feet and ankles which are related to the tendons and excessive synovial fluid (we think). I have been offered an operation on my feet which I think I will decline as I feel it is more important to stop other conditions arising by getting my thyroid picture sorted. Oh, and weight! I am clinically obese although my diet is very good. I don't exercise much due to 1. Lack of sufficient energy 2. The foot problem. However my BP and other health markers seem good.

My latest GP tests in April showed:

FT4 18.3 . (Range 11-22.60pmol/l)

FT3 5.3 (3.50-6.50)

TSH 0.17 (0.20 - 4.00 mu/L)

I have asked for a referral to an endocrinologist (Dr B in Calderdale) which will take place in a few weeks.

Can anyone help me? Should I be looking for a more complete treatment? What should I ask the endo?

3 Replies

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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 UK 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.

    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.

    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, leaky gut and gluten connection to autoimmune Hashimoto's too.

    Feet - pretty common to have sore heels, but other feet issues could also be connected to low vitamin d and low vitamin B

    drgominak.com/vitamin-d-hor...

    vitamindcouncil.org/tag/aut...

    Other websites to consider

    Thyroid pharmacist- Isabella Wentz

    Chris Kresser

    Amy Myers

  • Thanks, slow dragon, for this comprehensive reply! I will do as you suggest and post again in due course

  • SlowDragon...what a wonderfully helpful detail post which will benefit many people. Thank you

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