No appetite

[lightbeam]

Hello everyone, I've been hypothyroid, now under specialist, taking T3 for a month and that has helped a lot. Blood results now all in correct ranges. But I still no appetite for food at all. Has anyone else experienced this? Thank you. Some reassurance would be great.

[greygoose]

Yes. Appetite comes and goes, no matter what my levels are.

[lightbeam in reply to greygoose]

Thank you GreyGoose. I hope it improves for you.

[greygoose in reply to lightbeam]

Thank you. You, too.

[SlowDragon Administrator]

Do you know if you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies

Have you had vitamin D, folate, ferritin and B12 tested? These are often much too low especially with Hashimoto's

Do you have any gut symptoms like bloating or reflux?

[lightbeam in reply to SlowDragon]

Hello SlowDragon, thank you so much for replying to my question. Yes I do have Hashi'motos,, but my vitamin D, folate, ferritin and B12 are all normal. I don't have any bloating or reflux. I have only just been replaced with T3 though. I was previously taking only T4 replacement, but blood tests then showed I needed T3 as well. Perhaps symptoms will take a while longer to go?

[SlowDragon Administrator in reply to lightbeam]

How much T3 are you on so far?

Was Levo dose reduced at same time as T3 added or added T3 to T4

What were Thyroid results before adding T3 ?

Get bloods retested after 6 weeks and endo will presumably reconsider if need further increase

Getting DIO2 gene test may help get dose increase if you get positive result, if need be

thyroiduk.org.uk/tuk/testin...

Vitamins need to be optimal not just in range

Vitamin D around 100nmol

Ferritin over half way in range

B12 towards top of range

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first if you decide to try it

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

I had absolutely no gut symptoms but still turned out to be severely gluten intolerant. Very high percentage with Hashimoto's need to be strictly gluten free

[lightbeam in reply to SlowDragon]

Hello again SlowDragon, thank you very much for your reply and information.

Prior to T3 replacement in December, I was taking 125mcg Levothyroxine daily. My TSH and T4 were in range (I have a note of what they were), but my T3 was 25% below range at 3.3.

I am now, since 21 December, taking 10mcg of T3 alongside the 125mcg of Levothyroxine. T4 is 19.8, T3 is 6.2 (ref range 4.1 - 6.8) and TSH 0.48 (0.3 - 4.2).

I have been tested for coeliac. That was negative.

I have been very ill and depressed. The T3 has helped with that a lot, but the lack of appetite remains. I could go all day without food, and not feel remotely hungry, tho I would feel weak and tired. It's bizarre. I felt completely well and healthy before this began Dec 2016.

I just wonder if it might take a while on T3 for all symptoms to improve. My specialist said it takes 6 weeks to reach 'steady state' on T3 so it may take time to resolve. (I didn't really understand this tho).

I'll gladly try gluten free to see if it helps.

Many thanks for your help and advice.

[lightbeam in reply to lightbeam]

Sorry SlowDragon I made a mistake above. It should have said "my TSH and T4 were in range (I don't have a note of what they were)"

[SlowDragon Administrator in reply to lightbeam]

Yes it's definitely not a quick fix. Perseverance and getting bloods retested after 6-8 weeks

If you have not had vitamins tested ask GP to do so

Selenium supplements can help too

As can vitamin C

Important to only change one thing at a time

Yes I had negative coeliac test, twice, but like many with Hashimoto's, turned out to be severely gluten intolerant (proved by endoscopy more on my profile)

[lightbeam in reply to SlowDragon]

Hi again SlowDragon. That's very interesting - and encouraging to hear that it isn't necessarily a quick fix, even if bloods have reached 'optimal' levels - thank you very much indeed.

I am due to get my bloods retested with the specialist in 6 weeks time, and have a further consultation, so that's good to hear I'm doing the right things at the right time.

I keep trying to explain to my Doctors how incredibly ill I've felt for a year, but they give me a quizzically doubtful look. The thing is I look quite well and some of the doctors say so. I keep saying 'thanks, but I feel half-dead'.

On the advice of my specialist I am taking selenium supplements. The specialist has tested vitamins included selenium and zinc (we are waiting on the latter 2 results).

I'll look at your profile re gluten and your history. I can believe that gluten is a problem. It's always *felt* like it is. I have just been told by Doctors that it isn't,

I'm willing to try ANYTHING (tho I understand your advice not to change everything at once). I'm very open to cutting out gluten and seeing if things improve. Currently I'm not feeling I'm living life - just getting through it.

Thanks again SlowDragon!

Oops nearly put my real name then

[lightbeam in reply to lightbeam]

Oh my goodness SlowDragon I just read all of your profile. I feel like crying. I'm so sorry you've endured so much.

I also feel I have a lot in common with you. I have been on T4 for nearly 20 years. I had periods of time when my TSH soared and I felt really ill. VERY sore throats, swollen glands, feeling wretched. Doctors said 'it could be stress' or 'an impacted wisdom tooth'.

I too have experienced hideous anxiety WITH ABSOLUTELY NO REASON. It coincided with massive rise in TSH last Dec to 26. One doc said the TSH 'wasn't a problem'. Grrrrr....it would be if HE had it!

Right that's it. Reading your story, I'm off gluten completely as of now.

Is porridge OK? I'll google it. Otherwise I'll eat just organic fruit veg nuts and protein and nothing else for me.

Here's hoping.

Interesting about your taking tablets at night. I've been told to take in morning on empty stomach, only water and wait 30 to 60 minutes before food/drink.

A MILLION BILLION thanks to you, and I wish you every possible improvement and good health.

Can we DM at all on here?

Oops just wrote my name again had to delete it

[Angel_of_the_North]

I get someone to text me to remind me to eat. B12 is supposed to help appetite but I haven't really noticed any difference.