Help!! : I have hypothyroidism recently informed... - Thyroid UK

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Help!!

DaisyandRosie profile image
14 Replies

I have hypothyroidism recently informed via blood tests that it’s Hashimoto’s. For the past month my voice has become more and more hoarse and for the past few days I have a feeling of pressure on my throat and a feeling of a lump pushing into my throat. My lymph nodes are also swollen. I’ve seen the practice nurse today and she is referring me as she said it’s waving red flags to her; and I will have a camera down my throat. I’m sure it’s nodules pushing into my wind pipe and a camera will not show anything. What should I do?

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DaisyandRosie profile image
DaisyandRosie
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14 Replies
greygoose profile image
greygoose

I think an ultrasound would be of more use than the camera. It could be that your thyroid is swollen - it usually is with Hashi's. I had the same problem, plus a lot of other throat symptoms. Had the camera down the throat and was told there was absolutely nothing wrong with me! Obviously, the ENT doctor was not aware that the thyroid was right next door…

DaisyandRosie profile image
DaisyandRosie in reply togreygoose

Greygoose, that’s my worry. A total waste of nhs money. Just want the pressure on my throat sorted as it’s so uncomfortable.

Alanna012 profile image
Alanna012 in reply toDaisyandRosie

Same here, camera down the throat. Nothing found. Diagnosis: Hypochondriac

A diagnosis of hypothyroidism, 3 years of persistent throat pain and yet no one thinks, 'oh that will be the thyroid, which happens to be right next to the throat.......'

greygoose profile image
greygoose in reply toAlanna012

Amazing, isn't it. But I think all specialists are guilty of selective anatomy. They just don't seem to understand how all the bits fit together and affect each other. They just see the body as a collection of spare parts.

thyr01d profile image
thyr01d in reply togreygoose

Dear GreyGoose you make me laugh so much! Just love the 'spare parts'.

greygoose profile image
greygoose in reply tothyr01d

Well, it's true! They have no idea who it all works as a whole.

SlowDragon profile image
SlowDragonAdministrator

Previous post shows you are EXTREMELY Under treated

TSH Over 9

healthunlocked.com/thyroidu...

See different GP for 25mcg dose increase in levothyroxine

Bloods should be retested 6-8 weeks later

DaisyandRosie profile image
DaisyandRosie in reply toSlowDragon

I’m at my wits end. The surgery I’m with that covers the whole of St Austell has a triage system where you are seen by a nurse who then disappears to discuss with a doctor. I can’t get to see a doctor as the nurses decide what happens next, it’s appalling. I will post my results from today’s bloods.

SlowDragon profile image
SlowDragonAdministrator in reply toDaisyandRosie

We’ll print these out and give to nurse

A TSH of over 9 when taking levothyroxine is EXTREMELY hypothyroid

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...

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

tukadmin@thyroiduk.org

Also ask Dionne for list of recommend thyroid specialist endocrinologists.

DaisyandRosie profile image
DaisyandRosie in reply toSlowDragon

My TSH today was 4.6 (range 0.35 -4.94)

SlowDragon profile image
SlowDragonAdministrator in reply toDaisyandRosie

Far too high

See G.P. and get 25mcg dose increase in levothyroxine

SlowDragon profile image
SlowDragonAdministrator

Also insist on testing vitamin D, folate, ferritin and B12

Plus coeliac blood test

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 first or buy test online for under £20, just to rule it out first

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

(If test is positive you will need to remain on high gluten diet until endoscopy, 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...

DaisyandRosie profile image
DaisyandRosie

Today’s results:

um inorganic phosphate level (XE2q4) 1 mmol/L [0.74 - 1.52] Information about this test

17 Feb 2020Dr Alistair James (Clinical Practitioner Access Role)St Austell Healthcare (General Practice)

Test resultSerum iron tests;Serum vitamin B12 level;FSH;Thyroid function test;Serum folate level Report, Borderline, No Further Action (Patient Informed)

Coded entrySerum vitamin B12 level (XE2pf) 588 ng/L [187 - 883] Information about this test

Coded entrySerum vitamin B12 level (XE2pf) Information about this test

Coded entrySerum iron tests (XE24q) Information about this test

Coded entrySerum ferritin level (XE24r) 22.8 ng/ml [10 - 204] Information about this test

Coded entrySerum follicle stimulating hormone level (XM0lx) 65.4 iu/L Information about this test

Coded entrySerum folate level (42U5.) 12.2 ng/ml [3.1 - 20.5] Information about this test

Coded entryThyroid function test (X77Wg) Information about this test

Coded entrySerum TSH level (XaELV) 4.6 miu/L [0.35 - 4.94] Information about this test

Coded entrySerum folate level (42U5.) Information about this test

SlowDragon profile image
SlowDragonAdministrator in reply toDaisyandRosie

What vitamin supplements are you currently taking?

Ferritin levels are terrible

No vitamin D test result

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