Swollen throat & scan: Hi, So as may know I have... - Thyroid UK

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Swollen throat & scan

Muddy1980 profile image
9 Replies

Hi,

So as may know I have been suffering with a swollen throat since January and it's been on and off until March when it got worse. I couldn't get an appointment with the doc until today and the pharmacists didn't want to know.

A few weeks ago I decided to double my dose from 50mcg to 100mcg to see if it would help my throat being less inflamed and it just about sorted it out after about a week (I nearly cried when I woke up and couldn't feel it...I felt myself again). I could sense it wasn't quite right but I was comfortable. Unfortunately I couldn't continue on taking 100mcg as I would run out of tablets, so I'm back down to 50mcg and my throat is beginning to swell again.

I explained all of this to the doctor who was very shocked that I doubled my dose and told me not to do it in future and that she was unwilling to change it as I was in range '3.84'. She has dismissed that it is anything to do with my thyroid, but has referred me for an emergency scan in the next 2 weeks.

I am in two minds now, one is hacked off as my symptoms have returned but I can't doing anything to relieve them, and then on the other hand I'm sat thinking should I be worried thinking its throat cancer?

Has anyone else been through this? x

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Muddy1980 profile image
Muddy1980
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9 Replies
greygoose profile image
greygoose

If the sore throat when away when you doubled your dose, then I doubt the sore throat is due to cancer. You are under-medicated with a TSH of 3.84. Never mind that it is in-range, the ranges are unrealistic, and you are hypo when your TSH hits 3. So, you are still hypo, and that is bound to be why you have a sore throat.

However, it was a bit rash to double your dose, like that. Increases should be 25 mcg every six weeks. A 50 mcg increase is too much.

So, your doctor is ignorant. Two solutions : find another doctor, or buy your own levo. :)

Muddy1980 profile image
Muddy1980 in reply togreygoose

Thanks for the advice, I think I got so desperate after suffering for nearly two months that I just doubled up. I won't do that in future. I don't understand why the NHS doesn't recognise the variations in TSH levels, how does anyone ever get better?

greygoose profile image
greygoose in reply toMuddy1980

They take control of their own health and self-treat.

It may seem strange, but some people actually do get better on the NHS. It's just that we're the odd ones out. And, as the NHS firmly believes that one size fits all, they don't believe us, or take no notice of us. So, we have to do it ourselves.

SlowDragon profile image
SlowDragonAdministrator

As you have recently changed dose up and then down Wait 6-8 weeks before getting full bloods retested privately or see a different GP

A TSH over 2 is too high when on Levothyroxine

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get antibodies tested

50mcg is only a starter dose. Bloods should be retested after 6-8 weeks and dose increased in 25mcg steps, retesting each time until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Muddy1980 profile image
Muddy1980 in reply toSlowDragon

Thanks, if I don't have any joy in the next few weeks, I'm going to have to go private and sort this issue myself. I can't continue suffering, I wouldn't care, this is the only symptom that has really bothered me (except chest pain which has been gone since January), God only know how the people on here who have more symptoms cope. I have the usual hair loss and weight gain but at least its not uncomfortable. Thanks for all your help!

thyr01d profile image
thyr01d

Hi Muddy1980, I went to my GP yesterday with what I think might be the same as you and, forgive this, but, I am so relieved to hear someone else has something similar!

My GP said she had no idea what it was and could only think indigestion so suggested I keep a diary.

My feeling of swelling comes and goes, it's always worse in cold months and tends to stay from mid November to mid-February.

There may be a difference though, it seems to be my neck not my throat, although I do feel as if I can't breathe properly when it is at it's worst. My throat is not at all sore on swallowing but the pain is sometimes a hard ache and other times just like having large, sharp rocks in my neck.

Is this similar? If so, please, please tell me if you find an answer.

Best of luck

Muddy1980 profile image
Muddy1980 in reply tothyr01d

Hi,

Yes very similar, and I don't know whats going on. At the minute its mainly swelling of my throat rather than a sore throat so we could be the same. I sometimes feel like I'm being strangled. I get it worse first thing on a morning then it gets more intense on a evening.

It has come and gone but only over 3 or 4 days max for the last 3 months.

I had my scan today, but they couldn't / wouldn't tell me anything, I get my results on the 16th so I'll let you know the outcome....all I can hope is that its an allergy or some kind or just a need to up my meds...I really don't want it to be anything else.

Please get yourself checked out though, but you are right, the more I read about people having the same issues the more it puts my mind at ease...except the the scarey cases :(

thyr01d profile image
thyr01d

Hi Muddy

Yes, that's it, a sort of strangly feeling, at the same time I feel very irritable too, do you have that by any chance?

Perhaps it is allergy.

Best of luck with your results.

Muddy1980 profile image
Muddy1980

Hi everyone,

I have an update on my scan it appears I have a swollen thyroid on the right hand side and I'm being referred to an endo finally.

However I don't get to see them until the end of June.

My TSH has gone to 5.83 previously it was 3.38, before that 18 and before that 25.

My throat is still swollen and now I'm getting chest pain so just had an ECG and it's come back fine.

I'm on 50mcg levothyroxine and as you can see I'm undertreated which is what my Dr also said so I was expecting her to raise it to 75mcg until the Endo gets to see me. However she won't as she doesn't want to interfere with what they are going to do for me. I've told her that I'm only going to get worse over the next 6 weeks and asked why should I just sit there and suffer for so long. She just replied saying I may have hatashimos or graves disease so doesn't want to do anything.

I'm not happy about this so I've made another appointment for next Monday to talk with another Dr...am I right in asking for an increase or should I leave it. I'm due on holiday in a couple of weeks and I don't want to be suffering.

Thanks for your help x

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