Hi 👋 I developed a goitre about 10 years ago (in my 30's) scanned fairly regularly and reported as multi nodular and GP monitoring/ignoring
Recently feeling really tired, sluggish bowels, nails are all ridged and generally feel lousy.
Bloods at GP attached, advised to just monitor but really don't feel right and weight gain is really depressing me, I exercise 5 x 30mins per week and regular long hikes and just seems to be getting bigger.
Any advice welcome.
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TDL131
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Not surprised you don't feel well, your FT4 is very low - should be at least 50% through the range.
What time of day was the blood draw for this test? Because your TSH is low compared to your FT4, which makes me think it was probably done early afternoon? TSH is highest early morning - before 9 am - and as the TSH is all doctors tend to look at, we need it as high as possible.
A multi-nodular goitre sounds like Autoimmune Thyroiditis. Have you had TPO and Tg antibodies tested? If not, that's the next thing that needs doing.
And also stop all that exercise! It is not going to make you lose the weight and will probably make you put more on by making you more hypo. Just gentle walking until you get all this sorted.
Have a GP appointment today, just looked back on my bloods so I am prepared and noticed I have had TPO and tissue transglutaminase they are both positive. The results came in a week after the ones I first posted.
They are the antibodies for Hashi's and Coeliac Disease. If they are both positive, then you have them both. There is nothing you can do about the Hashi's, but for the CD you need to be gluten-free.
Sounds like an idiot to me. Positive always means you do have it, but it depends on the definition of 'positive'. For example with TPO antibodies. They are positive if over-range. So, over-range TPO antibodies mean you have Hashi's.
Not sure what is positive and what is negative with tissue transglutaminase because I've never had it tested. Perhaps giving the exact numbers would help.
Well, that's really helpful too - not. But, if they say it's positive you've got to believe them, as they did the test. And, positive means you have it, whatever you dopey doctor said. Best to at least try a gluten-free diet, it could make all the difference to how you feel. Makes you wonder how any of their patients survive. More by luck that judgement, I would guess.
Your local pathology lab might publish something similar to this:
Tissue Transglutaminase Antibody (TTG)
Description
IgA anti-tissue transglutaminase antibodies are now used as the preferred test for screening of coeliac disease and dermatitis herpetiformis, being highly (>90%) sensitive and specific. All positive samples are then tested for IgA anti-endomysial antibodies which are even more specific but though the test is technically more demanding and time consuming to perform. There is a good correlation between anti-TTg antibody and disease activity. Relapse or poor compliance with a gluten free diet is often associated with return of antibody positivity.The widespread use of these tests has led to the realisation that coeliac disease is common in all age groups even the elderly and presentation can be varied. An immune response to tissue transglutaminase or its products is the cause of coeliac disease. Most untreated coeliacs will have both IgA anti-tTg and endomyial antibodies. IgA anti-tTg tends to appear before anti-endomysial (sometimes before overt symptoms). On a gluten free diet IgA anti-tTg usually disappears after IgA anti-endomysial. There area few situations which lead to IgA anti-tTg positivity in the absence of coeliac disease, most commonly this is in chronic liver disease where total IgA levels are raised.
Note that coeliac disease is is often associated with IgA deficiency, a common immundeficiency found in around 1in 500 of our population. IgA levels are estimated in all patients with suspected coeliac disease. IgA deficient individuals with suspected coeliac disease are tested for IgG anti-tTg and IgG anti-endomysial antibodies. The test for IgA anti-TTg will usually detect IgA deficiency and indicate the need for measurement of IgG antibodies. Positive tTG and Endomysial are supportive of a diagnosis of Coeliac disease. A jejunal biopsy may be performed.
Indication
Highly sensitive and specific test for coeliac disease or dermatitis hepetiformis.
Interpretation
Positive IgA anti-tTg is highly suggestive of coeliac disease. When IgA anti-endomysial antibody is also present, a diagnosis of coeliac disease is almost certain. A limited number of patients are positive for IgA anti-tTg but not IgA anti-endomysial Occasionally a positive IgA anti-tTg test can precede clinical symptoms. Chronic liver disease particularly where total IgA is raised can give positive IgA tTg (but seldom IgA anti-endomysial) in the absence of coeliac disease. Since this is an IgA assay, IgA deficient patients should have IgG anti-tTg and/or IgG anti-endomysial assay performed. Coeliac disease is more common in IgA deficiency.
You might have problems getting doctors to accept the FT4 result without them turning to the TSH and denying your FT4 is low!
0.25 is surprisingly low for someone who has quite a low FT4. But we do see this happen and we also see the struggles some have in getting their doctors to understand properly.
So colleague rang me back, now booked in for face to face review T3 ECG and bone scan. Although notes say low TSH consider hyperthyroidism as T4 normal
hi, so sorry to hear that. I don’t know about your dosage and blood tests, but concerning your goitre and nodules, did you have an operation to remove them? I hope yes. My daughter, when she was 15 had a goitre and one big nodule. Operation, one love removal. Usually operation is the first immediate step. And to find the right dosage of Levothyroxine is the seccond step.
For your weight, I’m sorry about that as this is hard psychologically, you exercise, this is good, but not enough, diet is way more important. Diet is the most important. Exercise will just tone your body and maintain you in good health. But to loose weight, you have to eat healthy, and in reasonable proportions. Forget sauces, sugar of every kind, snacking. Try intermittent fasting, it works great, accelerate your metabolism, and keep you in good health on the long term. I do it since years, and I will do it for life, so good it is.
Weight gain is not always related to thyroid. It can be related to many other conditions, or no conditions at all, you can simply be insulin resistant, and this will not make you burn the calories. And if it is the case, intermittent fasting will solve your problem, believe me, I did it and will do it for the rest of my life. I love it, and I eat good, I am never hungry, I just eat in specific hours, from 11:00 to 18:00, that’s all. Now that I’m stable, sometimes on the WE, I eat more, or I eat later if I go to the restaurant. But I keep eating healthy at the restaurant. But this is only when you feel really stable with ideal weight. In the beginning you have to try to be strict. You body will thank you
Try this. You have on one side your thyroid problems, but if on the other side you can reduce the weight, it will make you feel so much better. Because it might be not related at all. You know there is no medecine for that, only diet, new habits, but believe me it’s great to do it, it is like a little gift you do to yourself.
I started in the beginning of perimenopause dieting, which means for me eating healthy, not counting calories, I hate that stress. My body was changing and I noticed I was gaining weight. I started intermittent fasting, I was always putting the food I had to eat in one single plate. (I still do) Not more. Nice good stuff. Paleo style. Grilled meat/fish and vegetables. But you can be vegetarian if you prefer, no matter. No sugar, no crab, no processed food. No sodas, only water and tea. I was eating Mediterranean, with olive oil, squeezing lemon everywhere (lemon is effective!). Well, I became another woman. I am 59, skinny, feeling good. I do a little exercise (not hard) at home, I do yoga, I dance, I cycle (I use my bike as transport as much as I can). I don’t do hard sport,
If you don’t have much time to cook, do like me: I take one day per week, or one evening per week, to cook many meals, I froze them or just put them in the refrigerator. I just have to reheat them gently at the oven to eat quickly after work. I bring one of my meal for lunch. no more sandwich, mayonnaise and all the crab. only good and healthy stuff.
Why don’t you try this too?
I wish you the best. Hope you will feel better. The endocrinologist will help you for your thyroid. But for the weight, it is a real change that you have to operate and it is so worth it, I know you can do it too after one week you feel already so relieved, feeling better, and when you will weight yourself, you will have motivation!!!! Because this works for real.
Appreciate the message. Not had any surgery, just monitoring and felt well so didn't question it. I eat a really healthy diet, don't fast but stear clear of processed foods, eat fish and small amounts of white meat, no red meat, eat loads of veg and fruit, but try to limit sugary fruits.
I will see GP again and if no joy will look for a private endo.
I do exercise, but as a family we are planning the 3 peaks challenge so need to keep fitness up for now and then will review this after.
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