This is a bit of a long one - Thank you all in advance for your advice.
So I have had a goitre for about 12 years - am not on medication and feel fine.. I have been aware it seems to have got bigger over the last few months and I do feel self-conscious about it. It does not affect breathing . I stayed at my brothers house last Oct, he came to me and said he was worried about me - could I breath and he has researched all day and has ordered iodine ..... I was taken aback - then a lovely Ukrainian refugee asked me why I hadn't had an operation and if they won't do one here I can go to Ukraine after the war... Then at my sisters 60th in Jan - the first person I spoke to was a Dr who had never met me before and he pointed at my neck and asked if I had checked it out. he was pretty mortified when I burst into tears!
I got really anxious - which does not help! I went to my Dr who listened and asked me to be open to surgery as I was self-conscious about the goitre. She also thought that diet did not affect the thyroid. I had bloods done at the surgery and Have gone for a scan today - the lady was nice and said I had lots of nodules, but she was not feeling twitchy about them... I got a text from Dr today asking me to make an appointment so we can discuss whether to refer me to a surgeon. I also did a medichecks blood test.
So I am assuming I have Hasimotos as high antibodies and inflammation. I would like some advise as to next steps please. I have cut out gluten - nearly all dairy. reduced grains. caffeine, sugars, alcohol. my thoughts are to try and get the inflammation and antibodies down and re test in 6 months. I am taking zinc, vit D, selenium , black seed oil, cod liver oil, a probiotic, boswellia and turmeric.
Do i need to take medication? will that reduce nodules ? For those who have goitres - how do you cope , especially when really visible. I really do not want to remove my thyroid if possible.
Medichecks results
CRP HS 5.08 mg/L (range 0-5)
Ferritin 170.0 ug/L (range 13-150)
Folate - Serum 12.06 (range >3.89)
Vit B12 active 136.0 (range 37.5 - 150)
Vit D 81 (range 50-200)
THS 4.23 (range 0.27 - 4.2)
Free T3 4.82 (range 3.1 - 6.8)
Free Thyroxine 13.9 (range 12 - 22)
Thyroglobulin Antibodies 102 (range <115)
Thyroid Peroxidase Antibodies 600 (range <34)
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plee123
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Your TPO antibodies are positive confirming you Hashimoto’s.
Your Frees are extremely low in range and TSH just above range. (Nearing Hypothyroid:
The high TSH (thyroid stimulating hormone) is a pituitary hormone and it rises to signal your thyroid to work harder - because your thyroid levels are low.
2 above range TSH, 3 months apart usually qualifies replacement. As you have positive antibodies you can push this point and argue it’s inevitable thyroid function will further decline & you have symptoms.
Replacement hormone will allow the thyroid to not have to work so hard & many do report swelling reduces too. Once optimally replaced.
This makes sense as the thyroid is working hard to keep up and not having to do that means it can reduce back to normal size.
If the swelling is considerable or related to nodules for example - it might not be a significant reduction.
I have a large 1 sided swelling & wasn’t offered surgery. As my nodule is hyper functioning I was only offered radioactive iodine treatment, the cosmetic aspect doesn’t concern doctors. I stayed on medication to reduce high thyroid levels.
Surgery is usually considered if the swelling impacts your breathing, swallowing, voice or cause pain, grow beyond a normal area eg downward or if the nodules look concerning & fine need aspiration doesn’t rule of cancer.
Iodine deficiency is very unlikely unless you have a very restrictive diet. Additional iodine can worsen under active thyroid - iodine is unpredictable when it come to thyroid.
If Doctor agrees to start replacement standard starting dose is 50mcg Levo (L-T4).
Children / over 65s & those with heart issues start on 25mcg but many doctors think if borderline 25mcg will be acceptable.
After 6-8 weeks the thyroid function should be retested & usually increased by 25mcg daily, until TSH under 2. Most feel well with FT4 in top 3rd of range & FT3 at least 50%.
Do you avoid fish / dairy / egg / meat? Iodine deficiency unlikely if having balanced diet.
Doctor may not agree to test but there are private companies offering test options.
I had a noticeable multi modular goitre. When I saw an endocrinologist I was told that taking levothyroxine would not reduce it but all trace of it disappeared within a year after starting levothyroxine, the replacement hormone. It’s always puzzled me why the endo said what she did.
I would certainly, in your shoes, push to start taking the replacement hormone, levothyroxine. You have Hashimoto’s disease so your thyroid is slowly being destroyed. There is inflammation, shown by your high CRP & ferritin results & I believe, this is causing your thyroid to swell. You’re likely to become increasingly hypothyroid.
Certainly before contemplating surgery I would insist that levothyroxine is tried for at least a year.
Did you follow the Throid UK procedure for your Medichecks test ie fasted & blood take early in the morning? If not your TSH could be higher than your test shows. This is important as it’s the only reading that the GPs will look at. However even though your results don’t show you being very hypo I think, from personal experience, you are definitely heading that way and should start treatment asap.
You’re taking a good range of supplements. You should look to adding in K2 alongside your vitamin D, it sends calcium to the bones and is always recommended here. You could added in a B vitamin supplement too.
I think since you’re taking supplements it’s good practice to stop them for at least a week before your blood test to avoid affecting your hormone levels. This is particularly true of Biotin, the B vitamin which can affect TSH readings.
I would not use iodine unless you test your level first & even then I would be wary. It could make things worse. You could make sure you use iodised salt which would give you a small amount everyday.
thanks for your reply. I had a friend who is a nurse take my blood about 10.30 am and I did have a slice of toast about 9am. I take mixed VitD/K . I do not even have salt in the house - so have not put in or on food for many years. Should I use sea salt? Its really reassuring that your goitre disappeared. It may be a good idea to do an iodine test?
Your blood test was a bit late, ideally it should be before 9am & no toast or tea/coffee just water. So if you ask for an NHS test make sure it’s as early as possible, wait for an early appointment if necessary.
The small amount of iodine in iodised table salt like Saxa might be helpful to you. Not seasalt though as it contains less iodine. I wouldn’t worry about getting an iodine test yet as I believe you have to test a 24 hour urine output in a Dutch test. If you want to do it post again asking for advice about iodine testing. I don’t have personal experience of it. Sodium is useful in the body and unless you have high blood pressure not harmful.
I think you should concentrate on talking to your GP and ask for a TSH blood test. Maybe even ask for an endo consultation. Explain that you’ve received advice from ThyroidUK that levothyroxine could reduce your goitre and that your goitre is causing you anguish and mental stress because people are commenting having noticed it and it’s uncomfortable. Also mention your raised antibodies but the NHS doesn’t pay much attention to them unfortunately.
Hopefully even if your blood test TSH level is not very high it will allow you to trial T4 replacement. Remember it’s not a drug. You may feel worse to begin with as you will need to slowly increase your dose from a low level to the right level for you. Keep posting here for advice.
A scan of your goitre, so that any reduction can be properly monitored, would be useful and would back up your case for an increased dose of T4 , if needed later.
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