Hypothyroidism and dry throat

[Lala62]

2 weeks ago my GP upped my medication from 25 to 50 mcg Levothyroxine. It’s been 4 months since my hemithyroidectomy and I thought I would be completely back to Normal. But I now feel worse than before the thyroid removal. I have a whole list of ailments but the ones bothering me most at present are a very dry throat, frequent urge to swallow, chest pain and feeling of wanting to burp all the time ,reflux, feeling if something in my throat, constant throat and mucus clearing. Has anyone suffered the same? I had my 1st follow up on the phone with surgeon but she said unless it was an emergency she would see me in 6 months time.☹️

[Marz]

Sorry to read you are still struggling and it's a shame you had to wait so long for a dose increase.

I have read your last post of two months ago so am wondering what the results were of the Private Tests you were going to have.

If your T3 level is low in range it can affect muscles - and this could impact throat muscles too. Have you tried gargling to stimulate the vagus nerve and add moisture ?

Did you manage to get the notes from the hospital to learn more as suggested by others in your last post ?

Hope things soon improve for you.

[Lala62 in reply to Marz]

My GP practice don’t test T3 and everything else now that’s happened I’d rather stay away from hospitals. I do gargle salt mouth washes I read somewhere that It was good . I can’t say I’ve noticed any difference. Under the current climate it’s extremely difficult to talk to any kind of medic unless it’s about the virus☹️.

[Marz in reply to Lala62]

Certainly difficult times. Could you increase the dose yourself ?

[Lala62 in reply to Marz]

I was thinking of doing that but don’t think the GP will be too pleased ☹️It’s so difficult, I’m caught between a rock and a hard place!

[Marz in reply to Lala62]

I don't think you will be the first here - nor your GP the first to be upset !! Do you have enough pills ?

[Julesboz]

Sounds similar to me. I had a hemithyroidectomy last November. I’ve never been officially diagnosed with hypothyroidism before or after the op. My blood test results weren’t opitimal before the op and got worse after (although still within range) and I certainly felt it. After the op, despite having a lump removed, it felt like I had a lump in my throat all the time, and I had other symptoms like fatigue, weight gain and reflux.

I’m now taking Metavive 1 and it’s made a lot of difference. The ‘lump in throat’ feeling has diminished as have most of the other symptoms.

I see a holistic GP and she told me that our thyroid function reduces as we age, and if you’ve had half removed it’s going to struggle even more, and from what I’ve seen on this forum the dose of Levo you’re taking is very very small. I’d recommend posting your latest blood test results and getting comments because it does sound like you’re undermedicated.

[Lala62 in reply to Julesboz]

My latest Gp results were TSH 8.4 . They only test and T4 was 12.0. My levothyroxine dose is 50 mcg. When I spoke to the surgeon last week I told her all my ailments but she said I shouldn’t just be looking to increase the dosage. She suggested a blood test in 6-8 weeks time.

[Julesboz in reply to Lala62]

Well you haven’t given the ranges but normal upper end range for TSH is about 4.2 to 5, so 8.4 sounds very high. I think the aim for patients on Levothyroxine should be to reduce the TSH to around 1, it certainly shouldn’t be over range!

[SlowDragon Administrator]

Previous post

healthunlocked.com/thyroidu...

Which brand of levothyroxine are you currently on?

Thyroid levels will need retesting 6-8 weeks after each dose increase

Levothyroxine doesn’t top up your own thyroid production, it replaces it

You will highly likened to increase dose slowly upwards until on full replacement dose

NICE guidelines

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

Post re how to push for dose increase in levothyroxine

healthunlocked.com/thyroidu....

Insist that GP run full testing in 6 weeks ....or especially because of current crisis get FULL thyroid and vitamin testing via Medichecks or Blue Horizon privately

Come back with new post once you get results

You could test vitamin D now £29

vitamindtest.org.uk

Optimal vitamin D is at least around 80nmol and around 100nmol may be better

[Lala62 in reply to SlowDragon]

Thank you so much for your reply. In these difficult circumstances it is reassuring that I’m not alone with all these hypothyroid ailments. Unfortunately I think no much can be done until this pandemic comes to a close. All I can do is get my bloods done in 6-8 weeks to see if this 50 mcg dosage is fed tube but judging by how I’m feeling I suspect it isn’t.

My vitamin D was last tested in December and it was 51.2 within normal range.

[Marz in reply to Lala62]

How much D3 are you taking ? Would be better around 100 ++

[queeniebunn]

Hi Lala62

I had partial thyroidectomy about 7 years ago and I currently take 150mcg daily. This was reduced from over 250 as I ended up in hospital with very fast heart rate, so I’m aware how difficult finding the correct balance for yourself is. It took a really long time to get my dose right and I feel on top of it today. I no longer have the feeling of exhaustion although also suffer from myasthenia gravis so hard to tell which it was. Still often feel like a lump in my throat particularly when laying down..

it is so important that your dosage is built up slowly. Agree with others, sounds like you need more.

Stay safe everyone x

[Lala62]

So I rang my GP because if all my symptoms affecting my daily life-carpal tunnel. Tinnitus, lack of energy, fatigue, gum problems, reflux plus , puffy face many more . I asked if I could have a blood test done at the 8 week mark since being on the increased dose of levothyroxine of 50 mcg. I explained that my symptoms were no better and I’m far from feeling normal or indeed how I felt before surgery back in November . She basically said that my TSH of 8.4 would not be causing any of these symptoms as the TSH is only slightly elevated. Due to COVID 19 she added that nothing can be done until social distancing is over as me going into surgery for a blood test is a risk to myself and to them. The GP said they are only accepting emergencies to the practice in the meantime to manage the best I can. I think when all this is over I will be seeking out an endocrinologist specialist to help me feel normal again. Everyday is a struggle with different symptoms ☹️.thank you for listening 😊

[SlowDragon Administrator in reply to Lala62]

GP is wrong

On levothyroxine 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)

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

Ask GP to test vitamin levels

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)

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

Aim Of levothyroxine is to bring a TSH under 2.5

gp-update.co.uk/SM4/Mutable...

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

[e-mail]

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

Or advise on self supplementing if over 50nmol, but under 75nmol

mm.wirral.nhs.uk/document_u...

ouh.nhs.uk/osteoporosis/use...

But improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

[Lala62 in reply to SlowDragon]

Thank you for all the information. I was thinking of getting my bloods done privately via mail and if TSH is no better ie still at 8.5 then I’ll up my dose by 25 mcg. Thank you for the great advice. I’ll read all the articles over the next day or two.

[SlowDragon Administrator in reply to Lala62]

Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

Post re how to push for dose increase in levothyroxine

healthunlocked.com/thyroidu....

[Lala62 in reply to SlowDragon]

Thank you for all the fantastic advice 👍

[Betty97]

I too have had a very dry throat, particularly in the mornings... for over 2 years now. In the morning (usually while I am working!) I have to keep clearing my throat.

I keep mentioning it to doctors and asking why it might be dry and all they say is that I'm dehydrated - which is not helpful as I always have a drink of mint tea or the like before bed and water first thing when I wake up.

I have been on thyroxine for over 10 years and every now and then (when the doctor tries to reduce the dose or change the brand or the manufacturer alters the constituents) I start to get bad headaches and cramp and feel very tired. I have been given TEVA brand for the last year or so and recently the headaches and cramp came back so I decided to try taking half the dose. The headaches and leg cramps went but after a few weeks I felt dreadful and no wonder... blood test results were TSH 15.5 and T4 10.6 (no T3 result given). I'm going back up to 75 mcg but refuse to have TEVA. I have been told that they can't specify a brand (I wanted to try Wockhardt) other than Eltroxin so I'm going to revert back to that - which was what I was originally on but which caused problems when they changed the formulation.