"What would you do?" - update

I just thought I would update my thread "What would you do" started a month ago, as you were all so helpful. However, when I added an update to the thread it didn't seem to bring it up on the list of posts as I thought it would so I have linked it below. Not sure what I am doing wrong......

Yesterday we saw an NHS Endo for the first time. The appointment went pretty much as we expected - "you are not hypothyroid", "TPO result is marginal", "we look at blood results not symptoms", "Free T3 is only just out of range so not an issue", etc. At least we were prepared so weren't surprised. My husband had bloods done again and we should also get Free T4 and Vitamin D as well, which is a start. He is also having ultrasound of his thyroid in about 6 weeks with a repeat of the bloods at the same time, then a follow up to discuss. Not holding out hope of any treatment as according to them there is nothing wrong.

healthunlocked.com/thyroidu...

9 Replies

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  • Kruzgal Adding to a thread doesn't bump it back into the top with this type of forum, the threads stay where they are so new posts are missed.

    Unfortunately the appointment went about as well as most NHS appointments :(

    Did you mention central hypothyroidism as discussed in your other thread?

    Did you take the Dr Toft article and point out what he says about where antibodies are present then Levo should be started to 'nip things in the bud', mentioned in your other thread?

    "Free T3 is only just out of range so not an issue" - did you ask what is the point of having ranges if you are going to ignore them?

    Bear these things in mind for the next appointment, it looks as though you are going to have to fight your corner to get anywhere.

  • Adding to a thread doesn't bump it back into the top with this type of forum, the threads stay where they are so new posts are missed.

    Sorry, SeasideSusie, but it depends on how you view the forum.

    If you look at the "recently active" posts you'll see any posts that have been added to no matter how old they are :

    healthunlocked.com/thyroidu...

    If you view the forum via the "Newest" post link you'll only see new posts :

    healthunlocked.com/thyroidu...

    Based on comments I've read I think lots of people only look at the "Newest" link, and never look at the "Recently Active" link.

    It would explain why so few people reply to updated posts which have been replied to after a gap.

  • Oh I know that HB :) I always use 'recently active' after I've checked 'newest' but as Kruzgal is quite new to the forum, and from how her post was worded, I gathered she didn't know about 'recently active' so I tried to keep it simple (I need simple tonight :D ).

    In fact, despite being a member of HU for 3 years or so, I only found out about 'recently active' last year when you wrote a post about it!

    I don't think many people at all know about 'recently active'.

  • I do hope the NHS Endo you saw develops below range Free T3 at some point in the next 6 months. And I hope someone tells him/her that being just a little bit below range is not a big deal.

    I was told my thyroid didn't need treating for over 20 years - I don't have autoimmune hypothyroidism, so my problem never got worse - it just stayed as "subclinical hypothyroidism" permanently. My thyroid function was poor, and nothing made it any better or worse. I just wish I'd followed it up and started treating myself much earlier than I did.

    The problem won't go away, so I think your husband should self-treat.

    And this comment "we look at blood results not symptoms" in my view is the mark of a sadist.

  • "I do hope the NHS Endo you saw develops below range Free T3 at some point in the next 6 months. And I hope someone tells him/her that being just a little bit below range is not a big deal."

    Ditto!

    "And this comment "we look at blood results not symptoms" in my view is the mark of a sadist."

    Ditto again.

    (Told you I need simple tonight :D )

    Wouldn't it be nice if we could curse all these doctors with our symptoms and then tell them​ they're not going to be treated!

  • Thanks everyone. I am a long time forum user but have never come across the recently active/newest tab - posts on other forums I am a regular on have always just added back in at the top, no matter how old. Thanks for the explanation.

    The endo was, as expected, very dismissive. Central hypothyroidism was mentioned and I guess when the Free T4 blood result is in that may or may not help with the diagnosis. He was very honest "we can't prescribe T3 now anyway". We told him we would source it elsewhere.

    I was a little surprised by his comments regarding Thyroid Peroxidase. In my book if a recommended range is 0 - 34 and your value is 81 then you are way over. As you say, what is the point in having these ranges if they don't mean anything and a reading 100% above the top of the range is considered marginal!

    I have been doing lots of reading (my husband has just about given up) and I am encouraging him to follow the advice from here and also the thyroid patient advocacy site. Lots of his vitamins/blood measures are below/well out of the optimal range so I think he needs to start with that and also go gluten free.

  • I definitely agree about the low nutrients - improving those has an enormous impact on how well we feel.

    Going gluten-free helps a lot of people too, even those like me who have been thoroughly tested and been found not to have coeliac disease. But if it doesn't help then your husband can always go back to eating it again. It isn't a life-sentence.

    Going gluten-free may improve absorption of nutrients, either from food or supplements.

  • I forgot, he also said my husband would most likely develop hypothyroidism over the next 20 years, because of his family history. Clearly we have a long wait for treatment!

  • Get your husband to go on gluten free diet & avoid all soya.

    Very important to have good levels of vitamin D, folate, ferritin and B12

    The Thyroid Pharmacist website is great on importance of diet and other lifestyle things to consider

    Look at leaky gut, gut infections & healing the gut with probiotics

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