Swollen neck

[Luci20]

Hi, Has anyone else had a swollen neck and throat problems? My thyroid results have been borderline normal for the past few results but I have still had a swollen neck and throat problems which I think are connected. I brought this up last time I saw the endocrinologist and he said this could just be my normal reaction to levothyroxine. I am really worried though as I thought with my results being almost back to normal that I would no longer have any symptoms.

[Bugbear123]

I would getyour go to test you for EBV. All my thyroid symptoms were very similar to EBV when I got it.

[SlowDragon Administrator]

How much levothyroxine are you currently taking

How long at that dose?

When were vitamin levels last tested too?

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

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 third or half of daily 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 as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Yes in previous post....endometriosis is suggested to be more likely with thyroid issues

[greygoose]

What do you call 'borderline normal'? That doesn't sound optimal, to me. When a doctor says 'normal', he just means 'in-range' - anywhere 'in-range'. But your results can be 'in-range' and you still be hypo. So, always best to give us the actual numbers: results and ranges, so that people can give informed advice.

[Luci20]

I am taking 50mg and 25mg. I was taking the different doses on alternative days for about 6 months but last time I saw my endocrinologist (in March) he said to take an extra day on the 50 dose to try to get my results up from being borderline to normal. I now take the 50 mg dose 4 days a week and 25mg on the other 3 days. My TSH was 4.4 on my last result and was 5.8 on the test before that. I had vitamins tested in November last year and in March this year they tested for total T3, thyroid stimulation hormone, cortisol, prolactin and oestrogen. All came back as normal. I have had antibodies tested previously too which came back as abnormal so they said it’s Hashimoto’s. I was due to go back to the endocrinologist next month but my appointment has been cancelled due to coronavirus. Last tests I had were done early in the morning but I had eaten before this and had taken my levothyroxine.

[SlowDragon Administrator in reply to Luci20]

Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Your TSH at 4.4 shows you are very under medicated

See/speak to GP/endo to get dose levothyroxine increased and bloods retested 6-8 weeks later

With Hashimoto’s low vitamin levels are EXTREMELY common

For full Thyroid evaluation you need TSH, FT4 and FT3 plus tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

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)

Is this how you do your tests?

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

List of private testing options

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Hashimoto's frequently 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 intolerance. Second most common is lactose intolerance

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find strictly gluten free diet reduces symptoms, sometimes significantly. Either 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 slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test, or buy test online BEFORE trying strictly gluten free diet

Assuming test is negative you can immediately go on strictly gluten free diet

If coeliac test is positive you will need to remain on high gluten diet until endoscopy, with maximum 6 weeks wait, officially

Trying strictly gluten free diet for 3-6 months

If no noticeable improvement, reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

[Luci20]

Just an update on this. I have had my TSH retested and it turns out my thyroid is now overactive. TSH is now 0.05. So anyone reading this who has been suffering from a really swollen neck and difficulty swallowing should make sure they get up to date blood checks to make sure they are not taking too much levothyroxine.

[SlowDragon Administrator in reply to Luci20]

Sound like you have Hashimoto’s...and likely low vitamin levels too

Important to get FULL Thyroid and vitamin testing

[Luci20 in reply to SlowDragon]

Hi SlowDragon,

I do have Hashimoto’s. I had my antibodies tested when I was first diagnosed with hypothyroidism. I did have some vitamins tested previously. I had ferritin and vitamin B12 and iron tested. All came back in the normal ranges. I was supposed to have vitamin D tested but they didn’t do this one so I will request this next time I have blood tests.

Thanks

[SlowDragon Administrator in reply to Luci20]

They don’t like doing vitamin D as it cost more than £1

You can test here via NHS postal kit

vitamindtest.org.uk

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

Please add actual results and ranges on ferritin, folate and B12

These need to be optimal...not just within the range

Hashimoto’s frequently starts with lots of swinging about ...known as Hashimoto’s flare....can get transient hyperthyroid results and symptoms as thyroid is attacked and cells breakdown suddenly releasing large amounts of thyroid hormones

This may be why TSH can suddenly swing ....always get full testing

[Luci20 in reply to SlowDragon]

My folate was 9.3 (5.4 -24). Ferritin was 62 (10-322) and vitamin B12 was 446 (211-911).

Thanks I will have a look at the links.

[SlowDragon Administrator in reply to Luci20]

So all slightly too low

Ferritin at least over 70

drhedberg.com/ferritin-hypo...

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

dailyiron.net

B12 over 500 ...so almost ok

Folate over ten ...similar

[tattybogle in reply to Luci20]

Wow ,that's a big drop in TSH for such a tiny increase in dose,

if you were previously only on 50/25 alternate days and then added one extra day at 50.

I'm surprised such a little increase in Levo lowered your TSH from 4.4 to 0.05.

Edit : i see from you reply to another post you have now been reduced to only 2 days at 50 and 5 days at 25 ie even less than you were on before.

Did your Gp make this reduction based on just the TSH result or did they get a FT4 done too ?

do you feel ok on it, i guess it's too soon to tell yet .

Hope you do ok, Luci20

I know it can be unsettling on your body, changing doses up and down.

[Luci20 in reply to tattybogle]

Hi tattybogle

I was surprised with this too. I only had TSH tested this time. In March I had FT4 tested which was 18.6 (10-20) and T3 which was 2.3 (0.9 - 2.5) so they were both on the high side but in range.

Yes, it has been very difficult with the fluctuating results and different dosage patterns. It has now been over a year since I was first diagnosed and I have not yet had stable results. I was initially on 50 mg for the full week but I had a swollen neck then and they tried me on the 25mg dosage with alternative days which immediately seemed to reduce symptoms for me. I have always found that on the days I have taken the 50mg I feel worse and I always get a swollen neck. This week though has been really bad as It has been hurting when I speak. My TSH in August last year was within normal range and I felt much better then. I was mainly on 25mg then too as doctors told me to take less of the 50mg. I think the 50mg is too high for me at the moment but the 25mg is not enough either and there is no in between amount. I know my TSH will probably end up going up again but for now I need the neck swelling and throat pains to go down.

Thanks

[tattybogle in reply to Luci20]

I 've always disliked taking alternate doses too , i try and find a way ( by cutting 25's in half etc) to take the same every day , It shouldn't make a difference with Levo because its stored in the blood but i'm fairly sure i can 'feel' a difference.

Did you know that 12.5 mcg tablets of Levo are available? you might have to kick up a stink to get them, but they only cost pennies and they are on the nhs drugs list (i think? , someone on here will probably know )

[Luci20 in reply to tattybogle]

I didn’t know they did 12.5! I asked my GP once if there was a dosage between 25-50 and he said there wasn’t. I think that would be good to try taking that with the 25mg to see if that helps. I will ask about this next time I speak to my GP, thanks!

[tattybogle in reply to Luci20]

It's very likely you 'll be told they don't exist , or they cant prescribe them , or they are more expensive, or there's no need because it makes no difference ,etc. etc because they wont know they exist and they wont have the time to look it up, and they get touchy if you know more than they do about a subject.

But if there's one thing i wish i had known 17 years ago when i was first diagnosed, it is that it pays to do your own research on matters thyroid, Gp's do not have the time or the education to understand more than the most basic concept of it ,

And most people do Ok on Levo , at least for the first few years, so they refuse to look carefully at the rest.

[SlowDragon Administrator in reply to Luci20]

Many, many people can’t tolerate Teva brand

Easier to cut 25mcg tablets in half using craft scalpel

[RedApple Administrator in reply to tattybogle]

Yes, 12.5mcg levothyroxine tablets are made by Teva. None of the other UK brands have this dose.

Luci20 The 12.5mcg levothyroxine dose was only introduced in the UK fairly recently, so many GPs are likely still unaware of it.

[SlowDragon Administrator in reply to RedApple]

Price per 28 tablets Levo

100mcg £1.32

75mcg (Teva only) £3.07

50mcg £1.32

25mcg £1.67

12.5mcg (Teva Only ) £11.80

Prices from June NHS drugs tariff

nhsbsa.nhs.uk/pharmacies-gp...

So it’s much, much cheaper to cut 25mcg tablets

tattybogle

Luci20

[tattybogle in reply to SlowDragon]

I stand corrected SlowDragon , I wouldn't pay £11.80 for them either !

I just bite mine in half , but then, i'm not very ladylike

[SlowDragon Administrator in reply to tattybogle]

Craft scalpel cuts them beautifully

[RedApple Administrator in reply to SlowDragon]

Yikes! That is an utterly ridiculous price. I knew that the 12.5mcg dose was bit more expensive than the others when first introduced, but not that much more expensive. No GP will ever want to prescribe that dose once they discover the cost, so Teva might as well stop offering it!

[Luci20]

Yeah that’s very expensive compared to the other dosages. I will try cutting them in half!