Thyroid UK
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Worse after gluten free :(

Hi just had my thyroid ultravit results back.

Last test in September I was feeling pretty good on 75mcg Levo. For the last 6 weeks i've been starting to struggle again with fatigue. I thought it was due to coming up for an injection but my b12 is still high end of range and I'm due another one Friday.

Sept:

Tsh 0.29 (0.27-4.2)

Free T4 19 (12-22)

Free T3 5.41 (3.1-6.8)

Tpab 22.5 (<34)

Tgab 245 (<115)

Only thing that's changed is I've been strictly gluten free since then. Still on same dose. Vitamins are all good but I'm due a b12 injection on friday.

Today:

Tsh: 2.23 (0.29-4.2)

Free t4: 12.5 (12-22)

Free t3: 4.5 (3.6-6.8)

Tpab 36

Tgab 303

I take my thyroxine religiously. Exactly same conditions. Blood test at exactly the same time in the morning and didn't take meds night before as usual.

I just don't get it. It's so disheartening :( how can my t4 drop so much on same dose but so frustrating that my tsh is not reflecting it.

15 Replies
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Salphy,

You're struggling with fatigue because you are undermedicated on 75mcg to have TSH 2.23 and FT4 12.5. Ask your GP to increase dose.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.29 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

Thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

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Thanks clutter. I doubt they'll increase me with my tsh being what they consider as normal!

So frustrating. I think my t4 is the same as before starting treatment but my tsh was much higher. Does it take time for tsh to reflect t4 or could I have just caught t4 on an off day?

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Salphy,

TSH responds to low FT4, that is why your TSH has risen to 2.23. Show your GP the Pulse article.

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It is a bit of a pain isn’t it. Going totally GF massively reduced my antibodies yet yours have increased slightly! Maybe you need your thyroid to be sorted out first or maybe it will just take a bit more time.

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I went gluten free and I've hashis I still get a flare but not as often. It has greatly reduced my antibodies and I had colitis I had a scope Christmas week and it's completely cleared so I guess going gluten free did my body good

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It definitely made me less bloated and less stomach ache but my antibodies have increased :(

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Salphy,

Antibodies have probably increased because higher TSH is stimulating the thyroid gland.

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Hi Mauds,

Glad to hear your health is improving. You've had an awful time the past couple of years.

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Thanks Clutter I'm holding my own seeing a brilliant young consultant in my local hospital he's been great. Getting the odd flare of hashis but thanks to you all educating me I now know the signs and what to do. Hope you're keeping well

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Mauds,

I'm well thanks :)

I'm glad you've found someone good. Can you email dionne.fulcher@thyroiduk.org with his details? I don't think there are many recommended endos in Ireland and we get asked quite frequently for recommendations.

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Sorry clutter he's not an endo but I do know a brilliant one and will definately send her details.

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It took over a year before my antibodies started to reduce this is a hard journey especially with Hashis up and down like a yoyo very hard on the body. Try keep it up I really believe it does help but you have to be patient and I know that's not easy. You're definately in the right place you won't go wrong on this site.

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My antibodies reduced by more than 50% after my last dose increase. I really thought I was on the right track and gluten free could only make things better so just really disappointing to find its not worked :(

We want to start ttc in October so Im really desperate to get stable on the right dose and diet.

Sorry to hear you've had a rough time. Glad you're getting better x

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You will get there. It's a long road getting this right but hang in there as I said you won't go wrong with all of these brilliant people helping you. The best of luck

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Thank you x

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