dejected, disappointed and fed up - test results

Hi all

That's it I'm so miserable and dejected right now I could cry ... its taken a few days to post this as I didn't feel able to do it when my results came through last week.

What I thought would work hasn't and now I'm feeling totally demoralised!

for the last four months I have been gluten free and taking supplements, but my bloods have just come back and my antibodies have almost doubled in six months when my last tests were taken!

why?

I'm really at a loss now as to what to think, I'm so upset that the diet has made no difference at all.

so what to do now....do I abandon the diet, do I carry on??? (more questions below)

I will say the bloating has gone and I don't have the stomach cramps very often now, but that could be that I had a slight intolerance.

Hypo wise I'm up and down as always. Still getting pains in my neck, shoulder and ears, but my other aches and pains have gone. I still get out of breath when I walk uphill, but I don't feel tired all the time. My neck swells frequently but I'm not sure what I can do? I have started yoga and take holy basil to try and combat my anxiety attacks as well as trying to keep my shoulder pain and joint moving. I take a bucket load of supplements every day, but still feel no better really.

I'm on 150 mcg of levothyroxine per day( dose had been put up from 100 mcg just prior to the first tests below) and now wondering if in fact I should try some T3 as my test results indicate that my FT3 really hasn't altered?

sorry if its a complicated post but If anyone has any ideas even if its shut up and put up ...I need guidance/help please.

thanks

Renni x

Here are my results

May 2106

TSH 0.02 (0.27-4.20)

T4 Total 139.5 (64.5-142.0)

FT4 20.77 (12-22)

FT3 5.34 (3.1-6.8)

anti-Thyriodperoxidase abs 9.7 <34

anti-Thyrioglobulin abs 159.8 <115

OCT 2016 (same ranges as above)

TSH 0.01

T4 total 142.8

FT4 22.67

FT3 5.98

anti Thyriodperoxidase abs 9.3

ANTI THYROGLOBULIN 283.9

26 Replies

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  • Anti-bodies can vary. Mine were VERY high when I was diagnosed in 2005. I only went GF just over 3 years ago and it took 2/3 years for the anti-bodies to reduce. Last test around 300.

    Healing the gut can take a long long time. Maybe look at other gut irritants - dairy - nightshades.

    I have seen far lower T3 ....

    As you are supplementing I am assuming levels are good - are they ?

  • Thanks Marz , I didn't really think about the antibodies see sawing like that. My ferritin, folate & B12 have all gone up- not had the vit D test results yet though. Do you think it's worth going for T3, I'm aware I may be clutching at straws as I'm feeling low at the moment x

  • chorobytarczycy.eu/kalkulator

    The above link was posted recently - am not sure of its science but at least it is a guide. It is Polish and will indicate where your T3 is in the range.

    Low VitD can also affect your mood - just think how much better we feel when it is warm and sunny !

    Gut issues - can also affect mood .....

    Have just done your FT3 figures on the above link and your T3 is 84% of the range which sounds pretty good to me.

  • Wow actually that does sound good. I know what you mean about mood, I think the dark nights here never help although it's still quite warm. The vit D test should come through in the next few days. I'm hoping it's gone up too, but at least this is prescribed so I have plenty of tablets x

  • What dose was prescribed ?

  • 800iu (20mcg), 2 per day, taking k2 with them

  • Maybe you need more to raise levels. Raise slowly.

  • Yes I thought it was a low dose, I don't think I'll have any luck getting a higher dose but we'll see what my test results are x

  • It's not expensive to buy your own from the Chemists. What was your result before you started supplementing ?

  • It was deficient at 25.1 nmol/Li

  • 5000 iu's would be better. Increase it slowly ... especially during the winter months.

    Take with good fats 😊

  • Will do thano you Marz x

  • OK firstly (((hugs))) - sorry you're feeling so down. But don't give up!

    Going gluten-free doesn't necessarily work antibody-reduction-wise for everyone. However if you've noticed benefits, then stay that way. I intend to, even if it has no effect, because there are other overall health benefits.

    Supplementing with selenium, 200 mcg per day, can help reduce antibodies in some folk, so worth adding that in if you aren't already taking it.

    Also, you may need to try going dairy-free and see if that has any effect. It is a long, long road to travel I'm afraid, as testing these things does take time, plus feeling rotten doesn't help.

    You could try reading Dr Susan Blum's excellent book - The Immune System Recovery Plan, there's a LOT of help in there to help you tease out what your own individual problems might be. :)

  • Aww thanks for the hugs, boy do I need them right now. I take selenium ... when I remember. It seems I'm going to have to be patient with the diet. 🙃 I've not read the book so will look for it, as I think it is a matter of looking for specific triggers. Thanks again for the hugs it has helped x

  • Buy a weekly pill box and put your pills for the week in it, that way you don't forget. :)

  • i would suggest a lot of your aches and pains are from chemical intolerance to levothyroxine

    many people simply cannot tolerate synthetic meds and only recover on NDT

    its possible dairy intolerance is fuelling your antibodies so do try eliminating that for a while too

  • Hummmm not sure about the NDT, although I take your point about chemicals & it's certainly something to consider. I thought the diet thing would work, but it seems I'll have to persevere x

  • Rennixon,

    4 months is hardly any time at all in expecting an improvement in antibody levels. You have noticed a reduction in bloating and stomach cramps so that would appear to be a positive reaction to eschewing gluten.

    You appear to be optimally medicated and don't appear to have a conversion issue with FT3 high in range.

  • Thank you Clutter, I was pretty sure they would have gone down, hence my dispair. I can though as you point out take those positives & try to be more optimistic ( not easy when I'm feeling awful). I'm thankful the too that my T3 is in nick.

  • all i can say is for many people despite perfect results they simply do not do well on levo or t3 but do very well on NDT

    If my husband was forced to return to taking levo or t3 he would prefer to be dead

  • Wow that's an endorsement!

  • Rennixon,

    I'm so sorry you are still feeling unwell. I know how frustrating and scary it is.

    As you know there are 4 forms of treating hypothyroidism:

    - synthetic T4 only (=levothyroxine)

    - synthetic T4/T3 combination therapy

    - ndt

    - T3 only

    Hence, you still have plenty of options left! With all of them it takes a lot of time to figure out whether it works for you or not. You have to keep trying and you will find a therapy and a dose that works for you. Take care xx

    P.S. I had very good test results on ndt but I ended up being unable to tolerate it. How you are feeling is more important than whether you lab tests look good BUT it takes time for any medication to work.

  • Thanks Kitten1978, I appreciate the support, I have a lot to think about now & im not sure which path I'll end up on, but it's always nice to know there are great people on here to listen xx

  • You will get there and we will support you through it ;) I honestly don't know what I would have done without this forum! It's a great source of knowledge and support. I know it's all frightening and confusing but you still have plenty of options left. It simply takes time and patience. Take care xx

  • Thanks Kitten1978, it is great isn't it. Sorry for late reply - now dealing with a horrid cold 🤕😩

  • I'm sorry: having a cold is the last thing you need now! Hopefully you will recover soon. Take care xx

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