Help with where to start?!

Hi all I'm looking for advice on where to go from here; sorry for the long explanation which follows! I've had auto immune symptoms for nearly 3 years which came on after sudden death of my dad. My symptoms were mainly joint pains, fatigue. Since then I've worked with a gastroenterologist to solve IBS issues and have eaten a low fodmap diet for a year now. However my symptoms are changing in ways that I believe are thyroid related however I have hit a brick wall with gp (despite her being really helpful). My fatigue continues and joint pain is now intermitant (possibly due to eating Auto immune protocol diet for over 3 months now) however for the last couple of months I feel dizzy all the time and have developed blurred vision. I have bouts of insomnia also. Tender liver (gallbladder removed) I've also had painful throat develop over last couple of months and at times it feels like I have lump in my throats and difficult swallowing. Last time I went to gp I mentioned dizziness and blurred vision along with throat pain and she said she'd write to endocrinologist for advice. I've had "strongly positive antithyroid peroxidase antibodies" in 2014 with normal thyroid function tests. Letter stated my TSH needed to rise above 10 before any treatment. Most recent bloods in June were: TSH 2.3 (range 0.2 - 4.5) and Free t4 12 (range 9 -21) up from 10 in Feb same year). Ferritin is 19 and had been 14 in Dec 15 (range 15 - 200) B12 was 839 (range 180 - 2000). Vi D 78 (range 50 - 170). Endo replied to gp and basically said they won't do anything as my test results are normal and NHS Lothian will not treat with meds as its dangerous. They also refuse to test my antibodies again as they have protocol that states they won't treat based on antibodies. So I am lost!!! I've been doing lists of reading. I'm waiting to see Scotlands only functional gp and in the meantime my symptoms are changing. I've had pains in my arms and shoulders starting a few days ago and now I'm left with what feels like a weak right arm and I'm getting spooked (despite meditating to reduce stress). I'd be happy to visit a private endo or gp or to travel to one if necessary as I don't think there are any in Scotland?? Hoping some of you lovely people can point me in the right direction. Much thanks. Ps I suppliment with 200g selenium daily, 600 mg magnesium, 50 mg zinc, 1500 mg milk thistle, vitamin d (but noticed it doesn't have Vitk), probiotics).

12 Replies

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  • Your ferritin level is very low. Has GP offered any treatment?

    Others on here will, I am sure have some treatment options (I have never had low ferritin so best get info from someone else)

    Your Vit D and B12 are only just acceptable, and might feel better if higher. You need folate level tested too

    Your FT4 is low and you need to know your FT3,

    Personally I would get full private test done - as 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. (£99)

    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 ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water)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

    As you have Hashimoto's (High antibodies) then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

    You do not need to have ANY obvious gut issues, to still have poor nutrient absorption or low stomach acid or gluten intolerance

    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, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.

    Suggest you look at

    Thyroiduk

    The thyroid pharmacist

    Amy Myers

    And good book is The Immune recovery Plan by Susan Blum

  • Hi Slowdragon, thanks for your reply :) my gp told me ferritin was fine (which made me laugh when I read results; I've read somewhere that optimal levels are 70 for thyroid function?). I'm trying with iron supplements so not sure if the ferritin has moved. I've been reading so much over the last few years and in particular around thyroid over the last couple of months. My diet is autoimmune protocol for last 4 months which is free of gluten, dairy, nightshades, grains, sugar and also low fodmap for ibs. I don't think my antibodies have been tested since 2014 so don't have any diagnosis. I think I will order the 11 points thyroid test to see what is says. I'll keep reading and any other advice can help. Thanks

  • I agree with Slowdragon, your ferritin is extremely low and this can cause fatigue and painful swallowing and many other symptoms:

    nhs.uk/conditions/Anaemia-i...

    I've also read elsewhere (sorry, can't remember where) that anaemia can cause blurred vision) so definitely supplement iron.

    If your liver is tender, has your GP done a liver function test?

    Here's a (long) list of reading on thyroid issues:

    tamietreatment.com/thyroid-...

  • Wow thanks that's a huge list! I'm going to start working my way through it bit by bit. Thank you

  • Good that you're treating your low iron. But are you taking vit c with it, to help absorption and protect your stomach?

    You have to remember that doctors know absolutely nothing about nutrition. So, if something is in range, no matter how low, they'll say it's fine!

    You don't need your antibodies tested for a diagnosis. If they were high once, then you have Hashi's. Antibodies fluctuate, but they never go away. And, getting a diagnosis from your doctor isn't going to change anything, because they won't offer any treatment. As far as they are concerned, there isn't any treatment, and antibodies are irrelevant. :(

  • Thanks grey goose for your comments. I have been taking high dose vitamin c bit had stopped taking the iron because my liver was tender. I'm totally confused by the whole thing to be honest. Do you have any advice re finding decent doctor to support this journey? Thanks again

  • In the UK? No, I'm sorry, I don't. I live in France.

  • Hi there! Hope you´ll find a good endo/ get your appointment with a functional medicine practitioner. To me it was worth the money plus a little travelling...

    Your symptoms match to mine and I think yours have been developing underneath without your noticing, but a death in the family made your "stress cup" overflow. No wonder (I am so sorry for your loss). But you will get better.

    Your thyroid values are ok, but did not they take FT3? That is important so they can figure out if there is an existing rT3 problem.

    Your ferritine is low, somewhat lower than mine! I am not suggesting you´ll have the same situation as I do, but you COULD benefit having your thyroid antibodies and that FT3 measured, maybe potassium and natrium levels as well. I think you are supplementing well enough but I am worried about the ferritine level. Maybe you could have a vitamin C load (take around 1000-2000 mg for some time if your stomach can take it!). Any gut problems?

    I am sure people here will guide you and actually you are well on your way if you´ll have that FM doc appointment coming soon?

    All the best,

    AC (chronic stress, milk protein allergy, low dheas, low ferritine, low TSH and somewhat low FT4, good FT3 -no thyroid meds, just supplementing with dhea, iron, magnesium, zinc, vitamins ect.)

  • Thanks for your reply; it feels a positive one. This is all pretty scary and overwhelming! I've been waiting to see this functional gp for about 4 months by the time I get to see her. I have the usual fears of what if she can't help; my symptoms are definitely changing. Stress; it's a rubbish one isn't it!! How are you feeling on your protocol?

  • Hi RichardsJJ!

    Yes, me too: I was very doubtful when I made an appointment with a functional medicine doctor. I was so frightened (about being laughed at and ignored) that I cancelled the appointment 2 times before I finally went to see the doctor! Even entering the room I was suspicious ! I had a 45-minute appointment and to my surprise the doctor listened carefully, asked questions and did not ignore my difficulties. She ordered the blood-work and said "That is where we begin!". She said that if those blood tests do not show the problem, there are other tests and we will test as long as you are willing to search for an answer. For the first time I was taken seriously by a health care practitioner and I was so amazed...

    I am doing much better now, thank you for asking. I have a little trouble with the dhea and since I started it, my fatigue came back. In between, without any milk protein, I was feeling alert and the fog in my brain started to vanish, slowly but surely. And that brain fog has not come back! My left side (hand, arm, shoulder) has been aching for years. Even that has eased now and I wonder why I spent a fortune visiting physiotherapy with no results whatsoever.

    My doctor (proud to call her mine) said, that we must follow the thyroid values and even sugar in the bloodstream. She suspected that I might have developed diabetes II and hypothyroidism if I had not the milk removed from my diet. I was so hungry all the time that I ate lots of sweet things (biscuits, chocolate, sweets...) but I could not help it. Now I do not even crave for sweet tasting foods! So it really is a BIG difference.

    So, do be open to all possibilities the doctor suggests. I was amazed about the milk allergy she suspected. I had lactose free milk in my diet and I thought it was okay. Now I know it was not.

    So, hope to hear from you and your experiences!

    Being hopeful and not blaming anybody, at least not yourself for the ailments you have, is simply healing. It is a good place to start. I was negative all the time and blaming myself, ashamed of my condition, even lying about my state because I was so embarrassed...NOT GOOD! I felt even lousier in the evenings, crying, hoping I did not exist... Once you start feeling a little bit better, all the positive things will multiply, even without your noticing.

    Best wishes,

    AC

  • Why don't you send away for a Blue Horizon Thyroid 11 blood test. They have a fingerprick test that you can do yourself at home. It covers thyroid antibodies as well as other things. It costs £99 or around that but it would let you see what is happening.

    I have been totally gluten free for the past year, I have Graves Disease, IBS, inflammatory arthritis to name but a few and when I was diagnosed with the arthritis last year I decided I had to do something. If going GF helped then I'd stick with it, if not then I would give up.

    Fortunately it made a huge difference for me and I have watched my antibody levels plummet over the year. My thyroglobulin is still above the upper likmit but nowhere near what it was to begin with.

    Good luck, hopefully you find someone good to help you.

  • Thank you. I think I will order the test and at least I know where I'm at in terms of numbers. Good to hear you are making improvements. I think nutrition is a big element of being well. I'm hoping the functional doctor I'm on waiting list for can help guide me further. Thanks again.

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