Second time of being diagnosed with underactive thyroid


Its been a while since I have logged onto this site as I was first diagnosed with an underactive thyroid about 5 years ago, then it miraculously got better for about 18 months, but sadly now my TSH is starting rise again and I am really starting to feel the symptoms of it.

Basically I am posting on here because I know I am going to go through the same fight I did before with regards to getting my dose increased but there seems to be a lot more information this time round and more studies seem to have been carried out and I was wondering if anyone had any ideas of things I could suggest to my GP?

Here are the facts:

My TSH is 6.3, my T4 is 'normal' but I have no doubt its probably low for me.

When I was first diagnosed 5 years ago I had autoimmune antibodies which weren't present when I came off the thyroxine 18 months ago so they must have died of their own accord.

I have horrendous IBS and have to eat a rigid FODMAP diet which doesn't give me enough energy to make up for an underactive thyroid so I am now on Mebeverine and just trying to eat as much veg as I can handle to help me.

I've had a 'tiredness blood test', I don't know what this includes, but assuming vitamins and minerals and they all came back 'normal'.

I am going to ask my GP to look at my blood test results from when I was last on thyroxine and felt better and ask to aim for those results again.

My biggest issue is that in the past even when I was on the highest dose that I could take that didn't give me overactive symptoms I didn't feel as well as what I did in the 18 months I was better.

Is anyone reading this thinking there is a relevance in that I was better for 18 months, having bad IBS and even when I was on the maximum thyroxine dose I could take I still didn't feel 100%?

Its so frustrating to be given 18 months of normality for it all to be taken away again! I desperately wish I had asked for all the blood tests (T4, T3, FT4, FT3 etc) when I was better so that I could have something to compare them to now.

Does anyone have any suggestions?

Many thanks

Hazel x

6 Replies

  • Your IBS could simply be coeliac disease or intolerance to wheat or gluten or lactose

    (Eliminate both from your diet for a month and see what happens)

    which can go hand in hand with hashimotis hypothyroid

    A TSH of 6.3 is very clearly hypothyroid and should be treated but its also vital you get ALL of your old and current results for


    free t4

    free t3




    vit d3

    if ferritin particularily is below halfway in its range your nidy simply cannot utilise levothyroxine but all 4 need to be halfway in their ranges

  • Hi reallyfedup123, what would be the minimum ferritin level required to transfer T4 into T3? My results have been 68 then 69 on reference range 20-250 (18 months and 12 months ago) then recently it was 97 (ref range 30-400). That means I'm in the lowest quartile. Am I deficient in ferritin? If do what supplements would I consider?

    I hope this is the cause of my ongoing fatigue, slight headaches, blurred vision and loss of libido.

    Any thoughts by anyone gratefully received.

  • Ferritin



    Vit D3

    MUST ALL be HALFWAY in each of their ranges for your body to be able to convert T4 into T3

    but you need to factor in that if you also have the DIO2 gene you have inadequate enzyme systems to support this and thus will need straight T3 therapy

  • Wow thanks reallyfedup123.

    My Vit D3 has been very low (sufficiency 50-250, deficient under 50) at 106 recently and 94, 87, 42 previously.

    My B12 has been ok? at (200-950) 620, 860, 1,130 previously.

    Looks like I'm ferritin and D3 deficient (under halfway).

    How do I find out if I DIO2 gene?

    Something's still not right with me. I'm so tired, anxious, headachy and lacking in libido.

  • Hazel, remission is as rare as hens teeth, it wouldn't be expected to last when you have Hashimoto's. Ask your GP receptionist or practice manager for your previous thyroid results and ranges. If they say no, ask for a copy of your entire manual and summary GP medical records. It'll cost up to £50.

    While you were on Levothyroxine first time around it will have suppressed natural thyroid activity and that's why your antibodies reduced. They're probably high again now.

    Ask your GP to test thyroid antibodies, ferritin, vitamin D, B12 and folate. Vits/mins are often low/deficient in hypothyroid patients and IBS may cause malabsorption of nutrients. You'll feel better with levels optimal. If you eat gluten ask for tissue transglutamine (tTg) which is a coeliac screen. If you don't eat gluten it will be negative.

    Undermedication is still a problem for many patients when GPs dose according to TSH levels. We can offer advice how to persuade your GP and if that fails, how to self medicate.

  • Thank you so much everyone, this is so helpful, I really feel like I have so much information to take to my GP, I think I will even print this off and take it in with me, I've written everything down for my gp because I don't think I can discuss it all in 10 mins lol.

    I feel so much more optimistic about it all now.

    Its also good to know permanent remission is rare because I thought I was super unlucky having it twice which was also getting me down, I was thinking 'why me', but it sounds like it would have happened at some point anyway and there could have been worse time for it to happen.

    I a going to try and think as positively as possible and hopefully my GP will help.

    Many thanks

    Hazel x

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