Unusual situation

[Kimgrey]

Anyone have experience with a high TSH level, 13, but losing weight without trying to?Thanks

[SlowDragon Administrator]

Significant minority of autoimmune thyroid patients (hashimoto’s) struggle to maintain weight due to poor gut function/loss of appetite and/or gluten intolerance or coeliac disease

Not everyone gains weight who’s hypothyroid

[Kimgrey in reply to SlowDragon]

I didn't realise that, very interesting thank you.

The next step suggested by my doctor is to increase medication and retest in 6 weeks. Would you agree with that?

[SlowDragon Administrator in reply to Kimgrey]

can you tell us more

What were thyroid levels before starting on replacement thyroid hormones

What are you currently taking

Levothyroxine?

How much?

Bloods should be retested 6-8 weeks after each dose increase

Important to test TSH, Ft4 and Ft3 together. Test early morning and last dose levothyroxine 24 hours before test

Important to test vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

Have you had thyroid antibodies tested

Or coeliac blood test

[Kimgrey in reply to SlowDragon]

To be honest I can't remember what my levels were before going on medication. I was constantly tired and suddenly put on weight which prompted a thyroid test. I started taking Eltroxin in 2008 & I'm currently on 0.1mg three times a week and 0.05 four times. (Increased to 0.1mg daily since test result yesterday).I've tested stable TSH 4/4.5 for the past two years on this dose.

Feeling tired, losing weight led me to test TSH and Ferritin. Ferritin fine but TSH is 13.

I'm currently taking a Vitamin B and a Zinc supplement.

I spend a lot of time in the sun, given our climate, so have not thought about taking Vitamin D.

I haven't had thyroid antibodies or coeliac tested yet.

Financially I'm not able to afford all the tests unfortunately, so I try to choose judiciously.

Depending on the new test result in 6 weeks time, after the increased medication, perhaps I should consider testing thyroid antibodies and coeliac?

Thank you for your help I really appreciate it.

[SlowDragon Administrator in reply to Kimgrey]

on levothyroxine the aim is to be on high enough dose that TSH is always under 2

So you have not been on high enough dose if TSH was 4 plus

Likely to have low vitamin levels…..including vitamin D

[Kimgrey in reply to SlowDragon]

Thanks I'll bear that in mind and see about supplements

[SlowDragon Administrator in reply to Kimgrey]

always test vitamin levels before starting any vitamin supplements

Vitamin D, folate, ferritin and B12

Come back with new post once you get results

[Lalatoot]

Yes I lose weight when I am undermedicated hypo.

[Kimgrey in reply to Lalatoot]

Thanks 👍

[Gummybearx]

When I was first diagnosed 20 plus years ago I lost over a stone in weight, due to stress so I thought. Had 2 children in 15 months and not been well alot of the time then went through a divorce. My TSH was 25, was diagnosed hypo and began medication which took 2 years to get on some sort feeling good. I fluctuate between hyp and hyper symptoms. I was falling asleep reading to my children in the evenings, they just settled down beside me bless them.

[Kimgrey in reply to Gummybearx]

Thanks for taking the time to reply ☺️

[Partner20]

Tiredness and unplanned weight loss should always be thoroughly investigated by your GP. I hope you have had a fully comprehensive range of blood tests. Request further investigation if you do not feel your symptoms have been adequately addressed.

[Kimgrey in reply to Partner20]

Thanks, I will do so.

[ICE187]

I did. I lost 25 pounds in 2 months with my TSH at 13. I lost another 20 pounds during the course of adjusting my Levothyroxine which began 7 months ago. My TSH jumped to 17 when I first began my Levothyroxine. It has since dropped "into range", but still higher than what I want. My weight loss has stopped. I did notice I developed gut issues after starting Levothyroxine, but I don't think the Levo triggered it. My first symptoms of hypothyroidism began in 2015. I was hit with several issues at the same time. Acid Reflux, weight gain and more. My TSH in 2015 was at 8, but nothing was done. It was ignored. My TSH kept climbing over the years as did more symptoms. Severe kidney or lower side back pains with rapid weight loss, night sweats sent me to my doctor again who still ignored my TSH level. I found a new doctor than ran my thyroid tests. My t4 and cortisol were in range. My TSH was 13. No t3 and TPO tests were done. I was immediately put on Levothyroxine. I am thinking with the Acid Reflux back in 2015, that was the beginning of my gut issues. I took Acid Reflux drugs because they helped. I gained a lot of weight at this time. Knowing what I know now, that was a mistake to take the drugs for Acid Reflux. I had Acid Reflux bad from 2015 until late last year when it mysteriously stopped all at once. With my case, I can see when I gained a lot of weight and when I lost a lot of weight.

[Kimgrey in reply to ICE187]

Interesting 🤔 I've suddenly had issues which I thought might be acid reflux but my doctor thinks are thyroid related. So in hindsight do you think you'd have had fewer issues if you hadn't taken the acid reflux drugs and instead had more focus on thyroid drugs?

[ICE187 in reply to Kimgrey]

Absolutely. My doctors treated each symptom, but not the root cause. My cholesterol was more than 2 times the maximum. My blood pressure was high. I was overweight. I had liver failure "non alcoholic/non drug related. Acid reflux. After researching a lot, I found out all of these are related to the thyroid. I was told to lose weight and put on statins and blood pressure meds. The statins did nothing to lower my cholesterol. Dieting did nothing for my weight. I thought my symptoms were just a part of aging. I'm 48 now. My vision took a hit as well. Tinnitus came. Vertigo. All thyroid related. I had some kind of acute kidney damage. Within a 2 week blood test period, my eGFR went from the high 90s to low 70s. My original doctor screamed cancer. I refused to hear that. My new amazing doctor looked over 7 years of blood results and immediately said it's my thyroid. Ironically, I felt normal aside from my age related thinking. I got covid and took the vaccine in july of 2021. I never felt right after that. October of 2021 is when everything hit hard. I already know I had hypothyroidism in 2015 and I think it was basically idling until covid. When it hit in October, it hit hard with a lotttt of symptoms. I started Levothyroxine in April of this year. It has been an up hill fight, but I am improving slowly. I'm still under medicated, but at least I know my health is getting better. I no longer take acid reflux pills, blood pressure pills or statins. My blood pressure is normal. Cholesterol is dropping and no more acid reflux. Gluten, dairy and sugar is my biggest enemy. I have played around with those foods enough to know what happens when I eat or drink those. If I eat gluten for 2 weeks, I am in serious pains for a week. The same with dairy and sugar. I've repeated this diet as a test several times and each time, it is the same. I can eat gluten a few times and then convert to gluten free without any issues, but I can't eat it for a couple of weeks straight. I haven't been tested for celiac. I honestly don't see the need in it at this point. I've learnt enough from these great folks on this site to know what is happening. Acid reflux pills lower acid. Hypo patients often have low stomach acid to begin with. We need more acid, not less acid. Acid reflux medications only mask the real issue.

[Kimgrey in reply to ICE187]

Sorry you had to go through all that, thanks for the info and I hope you continue to go from strength to strength.

[ICE187 in reply to Kimgrey]

Thanks, me too. If you have acid reflux now, AVOID acid reflux drugs. Apple cider vinegar with the mother is good for it. I eat a lot of Sauerkraut with a little bit of apple cider.

[Kimgrey in reply to ICE187]

I definitely will avoid them after your advice and I'll try the sauerkraut and apple cider thanks 😊

[SmPea]

I lost weight 2.5 stone over 3 years. Lots of investigations for weight loss but no explanation. Taking Levo I had lots of gut flare ups. My FT3 always low in range. In the last 2 years went private and trialled NDT only I have put on 1 stone and weight feels stable.

It’s so difficult when money is tight to get the full picture (NHS rarely do all the tests needed) but if you can afford just one private blood test through say Medichecks the Advanced thyroid check will give you a lot of information . Test is often cheaper to buy on Thursdays. Unfortunately it is still quite a lot and maybe too much of a stretch.

First though insist all necessary tests are done to check possible reasons for your weight loss.

[Kimgrey]

Thanks for that, I'll look into the advanced thyroid check.