goitre - should I be concerned?

[Confused46]

hi all, I’ve been on 75mcg of Levothyroxine for two years now after being diagnosed with hypothyroidism. On day 2 of taking the medication my thyroid gland swelled massively and has been like that ever since. I’ve recently had a CT scan to check for cancer, I guess, after being referred to an ENT specialist about it. He said he was 95% sure there’s nothing wrong. Idk if I’ve exhausted his knowledge but I couldn’t get a straight answer out of him about why the swelling’s happening and what it indicates about whether I’m on the correct dosage, etc. My GP is unfortunately equally unhelpful. I’m considering stopping the Levothyroxine as I just don’t trust that anyone knows if it’s actually potentially doing me more harm than good - and I’m sick of having a swollen neck. Any advice much appreciated. I have a layperson’s understanding of thyroid issues thus far. Thanks

[Jaydee1507 Administrator]

Welcome to the group.

Do you have your latest blood results to share with us with ranges? 75mcgs Levo is only one step up from a starter dose. Approx how much do you weigh? Its likely you are undermedicated.

[Confused46 in reply to Jaydee1507]

Hi there, thanks so much for your reply.

I think I weigh about 80kg at the moment. I'm 5ft 8".

The GP took my blood today for testing. He was extremely rushed and stressed and in no mood to answer any of my questions or listen to my concerns. I've just sent an email off to a private clinic tonight to ask if they might be able to see me - and to find out what their costs are so I can work out if I can afford it or not.

Thanks again 👍

[Jaydee1507 Administrator in reply to Confused46]

What time was your blood test? Highest TSH is at 9am so always best to get thyroid tests then or as close to as possible. Also do not take your Levo the day of the test, wait until after your test to take your Levo that day.

There's a calculation that estimates how much Levo you will require according to weight. 80kg x 1.6 = 128 so your final dose would be around 125mcgs Levo and you are currently under replaced.

GP's have poor understanding of how to make us well, and get easily scared of giving us too much hormone. So they just aim to get our blood numbers within the reference range and then tell us we are fully treated. We often have to cajole our GPs into dose increases and sometimes try diffrent GPs at the same practice to find one more amenable. I'm not an expert on goitres but my understanding is they can improve on getting the right amount of thyroid hormone.

So you need to make an appointment with a helpful GP and plead your case for a 25mcg dose increase. You are aiming for a TSH under 1. Don't be fobbed off.

[Confused46 in reply to Jaydee1507]

Thanks so much, this is really helpful. Blood test was at 10.40! I'm enquiring about ordering a test kit from Blue Horizon, per info from SlowDragon. I live very remotely in the Highlands so just need to understand if our slower postal system will be compatible or if I would be better visiting a city and using their option to attend one of their venues and have the test done there.

[Jaydee1507 Administrator in reply to Confused46]

If you can use your powers of persuasion with your GP then you might not need the private clinic. Around my way you're looking at around £250 for the first appointment and £100 thereafter. I have found that Medichecks prices are the cheapest for getting a full profile done. Monitor My Health is cheapest for just thyroid function tests. Don't forget to use discount code from Thyroid UK.

[SlowDragon Administrator]

ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

 

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

75mcg is likely inadequate dose

[Confused46 in reply to SlowDragon]

Hi there, thanks so much for responding with such great detail. My GP practice seems unable to cope with giving me any clarity on what's going on for me. I guess they are pushed beyond the max. with the pressure accumulating across the NHS. I had my bloods taken today. Apparently, they are going to test FSH levels as well as the general thyroid count this time. I have contacted a private clinic tonight to see if I can afford their help and, if I can, how I might access it. I desperately need to understand what's going on for me better as I can feel incredibly ill at times and, tbh, it's all quite frightening.

Thanks again for your time and the info. I will try to understand it all better when brain-fog is not quite so present. 👍

[SlowDragon Administrator in reply to Confused46]

Before considering booking any consultation we ALWAYS recommend getting FULL thyroid and vitamin testing done

I gave you the links in first reply

Come back with new post once you get results

Waste of time and money going to any consultation without getting full testing first

If vitamins are low first step is to improve all four to OPTIMAL levels

Was today’s test done early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

[SlowDragon Administrator]

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

So if you weigh 80kg you’re probably not on high enough dose levothyroxine

80kg x 1.6mcg = 128mcg as likely eventual dose levothyroxine required for your weight

Highly likely you are ready for increasing levothyroxine to 100mcg daily

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

[Confused46 in reply to SlowDragon]

Thank you - very helpful.

[Confused46 in reply to SlowDragon]

Making enquiry with Blue Horizon, I live very remotely in the Highlands so just want to confirm with them what the best option would be for me using their kit - testing myself or attending a venue. Our post can be a little unpredictable from here.