Hypothyroidism and Hashimoto's but severely underweight.

[Tkl221]

I have a very underactive thyroid and was just diagnosed with hashimoto's disease. My endocrinologist says that if anything, hashimoto's should have made me put on weight. The problem is, I've been severely underweight for over 2 years. My pcp and several other doctors can never find the reason. I will start taking synthroid again and I'm afraid that will make me lose more weight. Is it possible that an underactive thyroid can make you too thin instead of gaining weight? I literally dont even want to leave my house anymore because I'm so embarrassed by how thin I am and I'm sick of people talking about it, either to my face or behind my back. Any advice would be wonderful

[greygoose]

It's perfectly possible. Most people put on weight, it's true, but others lose it, and others just stay the same as they've always been.

Having Hashi's, like you, I ranged from too fat to too thin, whenever I had a Hashi's 'hyper' swing, meaning I was temporarily hyper for a while. I think, given all the evidence, my set-point should be thin. But, being hypo most of the time means I retain a lot of water, which makes me look fat (and doctors can't tell the difference!). But, if you're not prone to water-weight, then that won't be your problem, will it.

But, also, being hypo often means that we have nutritional deficiencies, and that can also lead to weight loss. Have you had your vit d, vit B12, folate and ferritin tested?

It really is time doctors got over their compulsion to stereo-type, and accepted that we're all different!

[Tkl221 in reply to greygoose]

Thank you! That makes me feel a little better. I did have my b12 and D tested. Once my b12 was too low but then it was normal. According to my scale I "gained" a few pounds but by looking at me youd never know it by how thin I am and how sunken in my face is so I'm guessing it's just water or salt. It just gets so frustrating. I've been dealing with it for almost 3 years! Thanks so much for your input.

[greygoose in reply to Tkl221]

Sounds like it's time to get your nutrients retested. There's no such thing as 'normal'. When a doctor says 'normal', all he means is 'in-range'. But, the ranges are so wide that they can't possibly be 'normal' all the way through. Therefore, we should never accept 'normal' as a result - it's an opinion - and should always get a print-out of your results, with the ranges, so that we know exactly what has been tested, and exactly what the results were. If you live in the UK, it is your legal right to have a copy.

[Tkl221 in reply to greygoose]

Once again, thank you so much!

[greygoose in reply to Tkl221]

You're very welcome.

[Buddy195 Administrator]

I lost weight when initially diagnosed. My symptoms were definitely more hyper than hypo, but antibodies now show Hashimotos. Try to get your key vitamins optimal; this will improve your overall health.

[Lalatoot]

I lose weight when I am undermedicated. Lost 2 stone the last time. Put some of it back on now but not all.

[tattybogle]

It's true.........Not everyone gains noticeable weight with hypothyroidism , i didn't , which meant nobody including me thought to suspect thyroid disease for several years after i'd had a baby, when we eventually did, bingo.

Because i'd got really skinny a few months after the baby , when i gradually became hypo, all that happened was i started to return to my normal weight , which has always been either very slightly underweight , or just right.

How much of this is because whenever i'm feeling unwell for whatever reason, the first thing that disappears is my interest in food, i cant say... most of it is probably Genetic. my family just seems to have women who don't get fat, and it's not through will power or disciplined eating.

Being pregnant doesn't make me put weight on either, apart from the obvious bit that belongs to the baby.

[Tkl221 in reply to tattybogle]

A lot of that sounds similar to my situation. About 11 months after my 3rd child was born I just dropped a lot of weight and it happened so fast I didnt even realize it. I've always been very thin but healthy. That was almost 3 years ago and I still havent gained. I even got pregnant with a 4th child and barely gained anything.

[Jazzw]

Definitely can and does happen. If you think about it, it makes sense. When you’re hypothyroid, often you feel so under the weather you just can’t be bothered to eat a lot or go to the effort of cooking—it takes too much effort or leaves you feeling even more unwell. So some people react (perhaps even subconsciously) by not eating enough to maintain their weight.

[Tkl221 in reply to Jazzw]

Coming here has definitely made me feel a little better! I appreciate your input very much!

[SlowDragon Administrator]

ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

A significant minority of Hashimoto’s patients struggle to maintain weight

Many Hashimoto’s patients are also gluten intolerant, about 5% are coeliac

Coeliac patients frequently struggle to maintain weight

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

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

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

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

[Tkl221 in reply to SlowDragon]

Wow, thanks so much for all of the information! I'm not currently taking any vitamins but I suppose it's something I should start doing.

[SlowDragon Administrator in reply to Tkl221]

Always Test first

You will see thousands of posts on here where people test find they have extremely low vitamin levels