Results are in but where to go from here please?

Hello, after taking some advice from greygoose, I purchased thyroid + 10 from BH. Results received approximately 4 weeks ago and are:

CRP H6.10 <5

TSH L0.0005 0.27 - 4.20

T4 97.5 64.5 - 142

FT4 16.62 12 - 22

FT3 H7.83 3.1 - 6.8

Ferritin 28.3 20 - 150

Anti Thyroidperoxidase abs H366.9 <34

Anti Thyroglobulin abs H230.0 <115

Vit B12 607 consider reducing dose >725

Serum Folate 25.49 10.4 - 42.4

I have been self medicating with 3 grains of Acella NDT after following STTM guideline but still did not feel well. Prior to NDT, my GP prescribed 100mg Levo telling me that was my 'maximum'

My current situation is that I am unable to continue funding the NDT and need to return to Levo with possibly some T3 that I am willing to purchase as my GP is convinced that the NHS does not offer T3 treatment.

Sorry for the long post but I am unsure of what to do next as my GP has brought forward my annual review and I would like to ask for any advice as to my best treatment options please.

Many thanks for any assistance you can offer.

Kind regards Elaine

25 Replies

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  • Your ferritin is much too low. Nothing is going to work for you unless you bring that up. Especially not NDT.

    Your FT3 is too high, so you need to lower the dose a little.

    Your B12 could be higher. Optimal is 1000.

    And you have Hashis, so you need that suppressed TSH.

    So, your next step should be to lower your NDT by about half a grain, and get yourself some iron supplements and some vit C. :)

  • Thank you again for your advice. In my post, I mentioned that sadly I need to go back to Levothyroxine for the foreseeable future. I wondered if you have any advice about the transition back to Levo please? Kind regards Elaine

  • I'm afraid I don't, no. But, you could post another question, with that in the title, and those that have done it will respond. :)

  • Thank you greygoose. Your advice has been helpful and I hope that as I understand my condition more, I will be able to help others. Kind regards Elaine

  • You're welcome. :)

  • You have very high antibodies, meaning Hashimoto's.

    Are you on a gluten free diet?

    If you are not, get GP to test for coeliac first, (though it's unreliable) then go gluten free anyway

    chriskresser.com/the-gluten...

    I read an earlier post saying you are perhaps lactose intolerant too

    Selenium supplement may help lower antibodies

    Also you need to know your vitamin D levels - can get checked for £28 via City Assay.

    If you do BH test in future the thyroid plus eleven includes Vit D

  • Thank you for your advice. I was tested for coeliac four years ago when I was diagnosed with hypothyroidism. As the results came back 'normal', my GP has not tested since. Maybe I will ask for another test and then start a GF diet as I realise it is not wise to give up gluten beforehand as it can give false results. Thank you and kind regards Elaine.

  • I have had coeliac blood test twice - once 20 years ago, once two months ago. Both negative. Just had endoscopy - no physical damage to see BUT conclusive biopsy result for gluten intolerance / silent coeliac.

    Gastroenterologist told me the test gives wrong answer (false negative most common, but sometimes false positive) just under 50% of the time!

    Giving up gluten, for me has been life changing in totally positive way.

    Goggle Hashimoto's & gluten - masses of info out there.

    I tried NDT years ago, and gave it up. Too expensive, too difficult. Then tried T3. Similar

    Now back to just Levo, plus lots of supplements (Vit c plus zinc, selenium, magnesium, Vit D, Vit k2, Vit b complex and B12! ) so far this is best it's been in 23 years.

    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.

  • Thank you once again for your further advice. Four years after diagnosis, I still feel that I have so much to learn about my condition. Do you think it wise to raise the coeliac issue with my GP or just opt for a GF lifestyle with a good balance of supplements? I am grateful to you and the kind people in this lovely group who are very helpful in sharing their experiences. Kind regards Elaine.

  • Probably just go GFree.

    I only had endoscopy as I couldn't walk (long story - see my profile) not being able to walk was result of 17 years on propranolol, (totally wrong medication) where as in fact I had low Vit D (due to gluten!)

    I had gone GFree 1st and found it astonishing, much to my surprise - never suspected gut issues.

    But having now read lots realise that for many (or all?) Hashi- leaky gut is significant - usually gluten, but sometimes also casin or lactose

    Good websites - Chris Kresser, Amy Myers,

    good book - Susan Blum - the immune recovery plan.

  • Thank you once again for your helpful advice. I will check out your suggestions to further improve my knowledge, brain fog permitting! Kind regards Elaine

  • Ferritin- supplement one times ferrous fumerate two times per day with vitamin C and water. Take 4 hours away from thyroid meds and 2 hours away from other food, drink and supplements to avoid interactions. After taking the course of 84 or 100 tablets wait 7 days and get retested. You MUST get retested as iron can be toxic. You can buy ferrous fumerate on Amazon. Alternatively go to a pharmacy you don't normally get your prescriptions filled at and is not next door to your doctors surgery. You will need to say to the pharmacist something like "My doctor told me I had low iron and I need to get some ferrous fumerate, and I know it's cheaper off prescription." Whether the pharmacist gives this to you depends on the b***dy mindness of the pharmacist but the larger pharmacists e.g. Boots, Tescos, Asda, Sainsburys are less likely to give you problems.

    Vitamin B12 take a mehlycolbalamin lozenges either Jarrows or Solgar which you can get from Amazon. You don't need the highest dose available.

    Folate - your level is fine as it is over halfway over the range.

  • Thank you for your advice. I am currently taking a B12 supplement but maybe I need to adjust the amount. Regarding my iron levels, I was tested four years ago when diagnosed with Hypothyroidism and given a high dose of ferrous fumerate liquid to improve my levels. GP then said to just take an iron supplement if I felt I needed one. On that note I explained that throughout most of my pregnancies I had very low iron and that my Mum and three sisters all have some form of anaemia. I will raise this issue at my annual review. Thank you and kind regards Elaine.

  • Your ferritin level is within range so your GP will NOT treat you. The vast majority of GPs don't know what ferritin is for and those who do think a level of around 30 is fine.

    You can ask to get your haemoglobin tested on your review. If you do make sure you get the result and start a new thread and post it. Unfortunately I've discovered that many NHS labs have a lower boundary than World Health Organisation (WHO) standards.

  • If you are supplementing B12, then the advice on here is to also supplement with a good quality B complex - ideally one that has folate in not the cheaper folic acid

    All the B's have to work together

  • with ferritin that low your body cannot utilise levothyroxine

    with a t3 result like that on acella ndt you should have been feeling fine

    so there must be something else going on as well

  • Thank you for your reply. When you say there must be something else going on, is there anything in particular that you are referring to please? Many thanks for your time and kind regards Elaine

  • if your relatives had some form of aneamia it may be pernicous aneamia

    this is also autoimmune

    i agree that going gluten free is a sensible move because that maybe a big part of your problem

    THYROID-S is a reasonable cost NDT which many people take inc 4 of my family...pm me for source

  • Prior to NDT, my GP prescribed 100mg Levo telling me that was my 'maximum'

    You know the NHS and the medical profession have stopped making any pretence of helping people to feel well when they start rationing Levothyroxine.

  • Thank you for your reply. I have been self medicating to try and help myself but sadly need to go back to Levo and feel at the mercy of my GP surgery courtesy of the NHS. Thanks to the help of the kind people in this group, I am gradually, through the brain fog learning how to continue helping myself. Kind regards Elaine.

  • If money is the problem then you can buy very cheap NDT from Thailand. Quite a few people on this forum take Thai NDT (including me), and do well on it.

    You don't need a prescription to buy it. It is legal to import it into the UK for your own use.

  • Thank you for your helpful advice. I had not realised that I could purchase NDT from Thailand. I assume it would be subject to customs and Royal Mail handling charges as my current NDT is? Thank you for sharing your knowledge, with kind regards Elaine.

  • T3 is the active thyroid hormone which controls the metabolism and therefore the symptoms. Your Free T3 is above the top of the normal range so you should not have hypothyroid symptoms.

    As you are still having what appear to be hypothyroid symptoms, one possible cause is a genetic condition commonly known as Thyroid Hormone Resistance. It causes hypothyroid symptoms and requires very high T3 levels in the body to overcome the resistance.

    If there are other family members with fibromyalgia, CFS, ME, Coeliac Disease, MS, Heart Disease, thyroid problems or depression this would further support this.

  • Thank you for your reply. My Mum had Hypo for many years before she died, my younger sister was Hyper and now hypo after partial thyroidectomy but she has been told by the doctors that they do not have any idea why she still has Hyper symptoms. As for the other conditions you mention, I am unable to find out if close relatives suffer with these. I wondered if you are able to give me an idea of how to raise the Thyroid Hormone Resistance issue with my GP, as sadly she only gauges my condition by the TSH and numbers on the screen. Many thanks for any further advice you can offer. Kind regards Elaine.

  • Unfortunately you are not likely to have much success on Thyroid Hormone Resistance with your GP or even with an endo.

    Most people with this condition are self medicating.

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