Been diagnosed since my teens (now 42) and I now take 125mcg levo a day. After starting treatment I remember I lost about a stone, and was happy when the weight stayed off. However, I have gradually become skinnier since then and have now reached a point where I'm just a 2-3 pounds above 'underweight' no matter what or how much I eat.
I've never spoken to a doctor who has been able to explain this. My previous GP became concerned that I had been misdiagnosed and ran additional blood tests to check all the levels (not just TSH), but the result apparently showed that I did indeed need the levo. And on the odd occasion when I have got sloppy with taking my pills and I've had blood tests, my TSH has been through the roof and T4 levels low.
I don't want to complain about being skinny and I feel very lucky being able to eat whatever I like. However I do worry that something is wrong with me that isn't being addressed. I have recently tried to really test myself and am eating high calorie snacks and have even tried introducing meal replacements on top of normal meals, and I still can't put on more than 1-2 pounds which I quickly lose.
I also think I'm quite susceptible to illness and tend to go down with 'flu for days on end when other people shake it off. I get cold really easily and sometimes sitting on hard furniture is really uncomfortable. I think I'd be quite happy being about half a stone heavier but I honestly don't think I could make this happen if my life depended on it.
How is this possible, especially when UAT is supposed to make weight loss difficult?
Anyone else like me on here?
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distractonaught
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Oh wait, that's the same as Free T3? If so then yes, I've had TFT blood tests done on several occasions and have never been told anything is off unless my dose looks too low or high.
So why do I get told to put my dose right back up again whenever I drop my dose even slightly? (usually by accident). Last time this happened my TSH went up to 50. I know that's not a reliable measure in itself but the dr checked T4 and I think T3 levels too.
Not suggesting you have the answer btw - it's just a question I'm asking myself a lot.
Then it is worth checking out what your adrenals are doing. I think it’s also worth getting a full thyroid panel done and posting the results here for people to comment on.
Cortisol- 4 pt saliva cortisol test that contains DHEA eg regenerus does this one and there is another company too - can’t remember
Full thyroid panel eg TSH, FT4, FT3, thyroid antibodies (to see if you have the autoimmune Hashimotos), vitamins and minerals: folate, iron, vit D3 and vit B12. Medichecks and blue horizons does this.
Best to do the thyroid test before 9am and fasting, making sure your last levo (T4) dose is 24 hrs before the blood test, and if you’re taking T3, this needs to be 8-12 hrs (I think) from last dose.
You need to make a list of your test with the ranges so we can really see whats going on. Sadly I have the opposite problem as you were just breathing air makes me gain weight.
I used to, but I decided it was probably a waste of money after a while and now just take C, D and Zinc winter only. Doesn't make much difference either way.
I'm studying nutrition I'm a bit obsessed with vitamins to be honest amd swear by them!, amount of times iv felt a cold brewing and taken high strength vitamin C and Zinc lots of disolvable tablets and literally next day its gone!...
I don't take vitamin d in the summer though as I'm not actually deficient, but take it in the winter as everyones drops with no sun...
Iv started using an app called myfitnesspal u record evrything u eat anf it counts the calories and tells u how many u need depending on how much u want to gain a week! And i realised i just dont eat enough calories to put weight on! So just started making protein drinks to help gain weight I use protein powder, Greek yogurt, berries and ice and water they are really nice and along side 3 meals a day im gaining very slowly!
Yes, that’s my story too. I weigh 47 kilos on a good day and usually more like 46.5. I can put on a few grams and feel very happy. The follow day it has disappeared again. I hate sitting on hard chairs, have a super soft mattress am always cold and people who do not know me well, think I am anorexic. I have no thyroid, removed in 2006 for Graves’ disease but have always been slim. I eat plenty of home cooked nutritious food but never takeaways or ready made food. No idea why I am like this but good to know there is someone else out there! I am on T4 and T3 and apart from the obvious very low TSH, my levels are fine.
Hi ,just read your post , was interested in what you said about sitting on hard chairs being uncomfortable also having soft mattress. What sort of sensations do you feel because I have had similar. Thanks
Well, just plain uncomfortable. I am wriggling around trying not to feel bruised before I even start and I would not last five minutes on a wooden chair with no cushion. If we are going to a restaurant with hard chairs, I ask for a cushion or smuggle my own in. Very embarrassing but I will never enjoy it if I do not help myself.
Presumably you have autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies?
Absolutely essential to test thyroid antibodies at least once
Low vitamin levels are extremely common and need regularly retested
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
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)
Obviously coeliac disease is well recognised reason for weightloss....the same is can be true of gluten intolerance
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
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
Thank you. I honestly couldn't answerwhether or not I have the autoimmune type as have never had the tests you mention. Thanks for the links to private services - I might try one of these just to see what they reveal. It's hard just to get the most basic results from my GP.
Yes, same here, and probably one reason why I was ignored for so long about not being appropriately medicated. I've always been very slim ~ even after having 6 children, who were all quite large babies, even the twins. The only exception being eventually developing a layer of mucin around my middle as a result of Levo not working for me, which was nothing like fat...just weird. That has gone, as I now take T3 only and feel so much better, but weight remains unchanged...I'm no thinner or fatter than I ever was, but Drs who don't know me are certain I'm over medicated.
I would like to have a bit more covering, as Hennerton says, hard surfaces can be a challenge, and I don't want to look 'ill', when I feel well. I have never eaten 'low fat' anything in my life, and have a healthy diet. When I was very hypo on high doses of T4, I could barely eat, as digestion was so poor, and I was living on liquids and one very small meal per day, but I didn't lose any weight either. I guess we're all different, and I think there must be many like us, but the majority seem to have the opposite problem. I agree though, that it can make you wonder...especially when people keep pointing out how thin you are! Twiggy was my saviour when I was young...she made being skinny fashionable😊 x
I just came across this on nahypothyroidism.org whilst looking for something else, and then realised I'd read it all before...that's how my brain works now!😳 anyway, may be useful...
Leptin
The hormone leptin has been found to be a major regulator of body weight and metabolism. The body secretes leptin as weight is gained to signal the brain (specifically the hypothalamus) that there are adequate energy (fat) stores. The hypothalamus should then stimulate metabolic processes that result in weight loss, including a reduction in hunger, an increased satiety with eating, an increase in resting metabolism, and an increase in lipolysis (fat breakdown) New research has found that this leptin signalling is dysfunctional in the majority of people who have difficulty in losing weight or are unable to lose weight.
The problem is not in the production of leptin; studies show that the majority of overweight individuals who are having difficulty losing weight have a leptin resistance, where the leptin is unable to produce it's normal effects to stimulate weight loss. This leptin resistance is sensed as starvation, so multiple mechanisms are are activated to increase fat stores, rather than burn excess fat stores. Leptin resistance is shown to suppress D1 and stimulate D2, resulting in reduced cellular T3 but a reduction in serum TSH. A study by Cettour-Rose et al. published in Americal Journal of Physiology Endocrinology and Metabolism demonstrated that physiologic reversal of leptin resistance restored deiodinase activity except in the presence of elevated reverse T3.
Thus, in the presence of elevated leptin level (above 10) there is a reduction of cellular T3 and a suppression of TSH, making the TSH an unreliable indicator of thyroid status, especially when combined with an elevated reverse T3. Thus, for anyone who has difficulty losing weight, a leptin level above 10 demonstrates that low intracellular thyroid levels is contributing to this difficulty, especially if combined with a high normal or elevated reverse T3.
So I guess we skinnys don't have this particular resistance problem, but it's probably many things...my overall metabolism is still a bit on the floor...but I suspect low cortisol to be my current problem, that and the darkness inducing a state or torpor😕 x
I get told that I don’t look or BEHAVE like typical hypothyroid person, as I am always active (regardless of how I feel), I am very slim and I have long, thick hair. I just take it as compliment now! On 125mcg Levo.
Heh. Well I also have ADHD so hyperactivity is part of who I am. But when I was diagnosed initially as being hypo I was very much not myself - lethargic, withdrawn and slow. The treatment has definitely cured this problem, but the weight loss thing is odd. Maybe it's not related to my thyroid or thyroid medication at all...
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