just wanted to ask something here as it’s been bothering me and a bit confused.
I had my neck scanned beginning of the year and they confirmed my thyroid was enlarged but nothing untoward going on and that unfortunately it just happens for some people and if I have any symptoms just to go back to GP for them to get in touch with hospital for further advice.
Having had back and forth with GP for a while (just started on levothyroxine 50mg) she mentioned in the back and forth that I have a cluster of nodules that it’s not a swelling. Is it all the same thing? Is it something I should keep an eye on and have scanned yearly or something? It’s noticeable swelling and sometimes presses in to my windpipe if I lie on my side/front when sleeping but it’s not bothering me too much.
It just feels like a lack of information from GP as they don’t really know but trying to skim over the details.
does neck swelling go down at all on the levothyroxine? I’m on 50mg as my levels are still considered to be in the normal range but have the high antibodies and plenty of symptoms. I’m happy to finally start the medication and hopefully won’t go hyperthyroid as the GP thinks could happen (will have bloods done in 8 weeks to keep an eye). Just have so many questions that pop in to my head. Thanks for reading ☺️
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Indeed levo can reduce the size of a goitre, but you probably need to be on a proper amount of it, suitable to replace your own thyroid hormone output fully as opposed to a starter dose of 50mcgs.
`Levo replces your own thyroid hormones as opposed to topping it up. Many doctors are scared of prescribing too much levo, so instead they dont give us enough.
50mcgs Levo is highly unlikely to send you over replaced.
How much do you weigh approx in kilos?
You can do an approximation of how much Levo you will need with this calc:
Thank you for your reply. That’s really good to know! I’m roughly 77 kilos (which I’m wishfully hoping will go down too!) it’s the heaviest I’ve been in my life, I’ve never been big. It’s been so debilitating fighting to get the medication. The fatigue is unreal and all my symptoms have been blamed on everything else over the years. Finally when my neck started swelling it’s given me a bit more leverage to push. Even getting my neck scanned was an argument! I was actually thrilled something was there as they make you feel so paranoid it’s so sad.
Thank you though as endocrinologist say they don’t want to see me as my levels are borderline/normal so it’s nice knowing I can get some answers on here when something pops in to my head!
So your very approx final dose will be around 123mcgs Levo.
When you get your next blood results do post them in a new post for members suggestions. You may need to be a little pushy in a nice way with your GP to get dose increases.
Have you tested and now supplementing key vitamins?
she mentioned in the back and forth that I have a cluster of nodules that it’s not a swelling.
So, you don't actually have a goitre - i.e. a swollen thyroid - it's a cluster of nodules causing a lump, is that it?
I don't think you do need to keep an eye on it. Nodules are pretty common - even people without thyroid problems have nodules. If there was one that looked troublesome they would have told you, but otherwise probably not need to have yearly scans - unless it gets bigger.
So, your doctor thinks there's a possibility of you going hyper? Well, she's wrong and she's right - but probably not for the reasons she thinks! You have Hashi's and Hashi's tend to have false 'hyper' phases. Let me explain...
Hashi's is an autoimmune disease where your immune system attacks the thyroid, mistaking it for the enemy. During an attack, the dying cells will deposit their stock of thyroid hormone into the blood, causing T4 and T3 levels to rise sharply, and the TSH will therefore drop.
This is only a temporary phase. With time, the excess hormone will be used up/excreted and you will become hypo again. And there's nothing to be done about it. You do not need anti-thyroid treatment. The best thing to do, if you feel hyper, is to stop your levo until you feel hypo again. But don't allow your prescription to be officially reduced or stopped, because you're going to need it when you go hypo again - as you inevitably will at some point - although you might enjoy a euthyroid period on the way down.
The majority of doctors know nothing about/do not understand this, and panic when seeing the suppressed TSH and want to slash your dose. But it's nothing to do with your dose, it's the nature of the disease. And it's essential that one of you understands that, and it won't be your doctor!
Thank you for all the information. It was just conflicting when I had the scan her actual words were your thyroid is enlarged but the GP is saying nodules so it was a bit confusing.
My symptoms have been getting worse and worse and really don’t feel like I’m living life at the moment but will keep all you’ve said in mind when I have the next lot of bloods done. Thank you
Personally, I'd take the word of the doctor/technician that did the scan, rather than your GP - she doesn't sound very clued up. And the people that do the scan know what they're looking for. Brief anacdote: when I went for my scan, the technician said 'oh, it's very small!' When to my GP and he looked at my results and said 'oh, you've got a goitre'. No, lamebrain! I've never had a goitre, always had a very slim neck. But he thought that the words 'goitre' and 'hypothyroidism' were inter-changeable! That's how much he knew about thyroid.
So, I actually have Ord's, where the thyroid shrinks, rather than Hashi's where it swells. You have Hashi's so it's not surprising that you have a swollen thyroid. But it should go down once you're on the correct dose. And it's perfectly 'normal' to have nodules as well.
Thank you that’s really comforting to know as I’ve been slowly going mad overthinking everything and doubting myself. The GP’s attitude was a bit belittling when I was asking about it but I know what was said at the scan, I’d been waiting for the scan for months so I wasn’t going to forget! Same GP contradicted advice from a different GP when I got an abscess last month so you can understand why I’m a bit sceptical and confused. I’ll try and ask for a different GP if I can. Thank you for your help! ☺️
Have you had vitamin D, folate, B12 or ferritin levels tested
If not
Get FULL thyroid and vitamin testing at next test
What vitamin supplements are you taking
Also GP should do coeliac blood test
Which brand of levothyroxine have you started on
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Thanks for all the information. Yes I never seem to be able to keep my iron levels up even though my diet is fine so I now supplement with iron and also vitamin D as that was low before but just every other day.
I’ll probably do a full private one as well as the nhs one when next one is due as I’ve asked to have records of my bloods just for my records but never get them.
I’m on 50mg of accord at the moment as a trial. I have 3 months worth but have to do bloods at 8 weeks and go from there
Low vitamin levels are direct result of low stomach acid. This leads to poor nutrient absorption, regardless of how good your diet is
Low vitamin levels tend to lower TSH, because for good conversion of Ft4 (levothyroxine or your own thyroid storage hormone ) to Ft3 (active hormone) we must have GOOD vitamin levels
Low vitamin levels leads to high Ft4 and low Ft3
Low Ft3 leads to even lower vitamin levels
Many, many thyroid patients struggle to maintain good vitamin levels unless supplementing
What were your TSH, Ft4 and Ft3 BEFORE starting on 50mcg Levo
What are most recent vitamin D, folate, B12 and ferritin results
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
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
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
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Thank you for all the information, really appreciated. I’ve trialled gluten free diet previously for about 3 months but didn’t notice any difference to be honest. I didn’t eat a whole lot of gluten beforehand and I’ve actually stuck to the gluten free pasta as I preferred it. I’ve just been trying to eat more fruit and vegetables and trying to up my gut bacteria to see if that helps. I’ll try and get the extra tests done and go from there. There’s a lot of autoimmune diseases in my family too, always wondered if it was a genetic thing.
I’ll definitely have another look through the options with diet and supplements to see if there’s anything I’m missing and perhaps get some extra tests done just to rule things out. Thank you ☺️
Hi, with you’re swollen neck have you had you’re thyroid antibodies (TPO) checked. Hashimoto’s thyroiditis is a possible reason & upping your thyroxine to 100 or 125mcg may be the right path. I was prescribed 100mcg with the same neck swelling + confirmation of. Hashimoto’s.
If Hashimoto’s is diagnosed your GP should get you under an endocrinologist. GP’s know the basics but not enough to monitor & treat something like Hashimoto’s and what is probably a developing goitre. This needs monitoring.
Yes have had both antibodies checked privately which were in the highest range and just the one done recently with GP which showed to be really high still. I mentioned hashimotos but she didn’t seem bothered just said yea probably that can be a common cause. That was why we had a bit of back and forth and she agreed to trial the medication but said endocrinologist wouldn’t want to see me so it’s really frustrating. Only when I mentioned going private was when she said about trialling the medication. I can see me going private eventually as I feel like my GP are just repeating generic information they’re told to say. I’ll see what happens in next lot of bloods as she said she’ll take me off them if levels go out of range so I’ll be back to square one! Thank you for the advice
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