Opinion please: hello all I have a feeling of... - Thyroid UK

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Opinion please

Daisydoo2 profile image
13 Replies

hello all

I have a feeling of fullness in my neck / throat. I feel it when I swallow and it feels worse at beginning and end of the day. I often have to clear my throat and have a croaky voice that comes and goes. My last blood test was borderline (a good 6 months ago) and I await an appointment to discuss results. ( my fault for delay). I guess my question is could it be that I need an increase in dosage. Am on 75 mcg at moment. Are these kind of symptoms an indication of thyroid working extra hard? I’ve also noticed my hair feels very fine and I think it has been falling out.

thank you

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Daisydoo2 profile image
Daisydoo2
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SlowDragon profile image
SlowDragonAdministrator

What were actual results 6 months ago

Do you always get same brand levothyroxine at each prescription

Probably time to retest anyway, including vitamin D, folate, B12 and ferritin

What vitamin supplements are you currently taking

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)

Daisydoo2 profile image
Daisydoo2 in reply to SlowDragon

thank you

Last results were

TSH 0.17 (0.27 - 42)

T4 15.4 (11.0- 22.0)

This was in the morning at least 24 hrs since last dose.

I actually don’t take any vitamin supplements.

My last vit D was 71.4 a couple of years or so ago. It was deemed to be fine.

I haven’t been advised to take any supplements. Maybe I should.

I am GF however

The brands of levo can vary each prescription

Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to Daisydoo2

Just testing TSH and Ft4 is completely inadequate but frequently all NHS will do

Request GP test vitamin D, folate, B12 and ferritin

For full Thyroid evaluation you need TSH, FT4 and FT3 tested 

Also both TPO and TG thyroid antibodies tested at least once 

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...

Just Thyroid includes BOTH TPO and TG antibodies -£49

randoxhealth.com/at-home/Th...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

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

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes

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...

Daisydoo2 profile image
Daisydoo2 in reply to SlowDragon

thank you for all your insight. I will definitely look into more thorough blood tests. What happens once you do a private blood test. Do you go to GP with results? And do they accept them?

SlowDragon profile image
SlowDragonAdministrator in reply to Daisydoo2

Work out which brand levothyroxine suits you best and get that one at each prescription

Many people find Levothyroxine brands are not interchangeable.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz 

Accord only make 50mcg and 100mcg tablets 

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord  doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

Northstar levothyroxine being phased out this month 

 Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.

Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet. 

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Aristo (currently 100mcg only) is lactose free and mannitol free. 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

 

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands 

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. 

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Verbena_67 profile image
Verbena_67 in reply to SlowDragon

Do u have breathing issues? My dad has funny feeling in throat and has voice issues, but also has breathing issues. It seems as if his lungs move air well so wondering if SOB is coming from throat area.

Regenallotment profile image
Regenallotment

I had this too. I had an ENT investigation (throat camera) I didn’t believe it but turns out they were correct about Silent Reflux, I also had scans ultrasound and MRI.

Here are the things that helped me;

1. Doing all the recommendations from SlowDragon for optimising thyroid meds, diet and vitamins.

2. Not eating after 7pm

3. No alcohol, no or very little sugar.

4. Raise the head end of the bed an inch or two (hubby put some wood strips under my side of the mattress)

5. NAC amino acid, tiny scoop in orange juice. Really helps with excess mucus.

it has gone away, thankfully.

I hope you find what works for you 🌱

Daisydoo2 profile image
Daisydoo2 in reply to Regenallotment

thank you for all the info and for taking time to reply. I will take onboard your advice.

Daisydoo2 profile image
Daisydoo2 in reply to Regenallotment

well interestingly the doctor seems to think it could be reflux and has prescribed tablets but has also referred me for repeat blood test, full blood count, and a few other things too!

Regenallotment profile image
Regenallotment in reply to Daisydoo2

bingo! What tablets did they offer? They suggested I take Gaviscon but after reading here how it can make low stomach acid worse I decided to try all the steps above first. Reflux is a symptom of hypothyroidism, particularly in autoimmune where the stomach valves become compromised due to low stomach acid (I picked this up listening to Dr Eric Baclavage). Reflux isn’t necessarily acid reflux, it can be from low stomach acid. My thinking is if I take Gaviscon or omezaprazole I’ll cause even more problems. So for me, increasing my Levo to 125mcg and doing all the steps above to raise stomach acid and improve transit from stomach to small intestine worked. I’ve recently stopped the NAC as it’s not recommended taking longer than treating the GI issues which for me are mostly gone. (That was in the book SuperGut) My follow up with ENT went well, they were pleased with the results and said to GP that my T4 dose was clearly right for me and no reason to adjust. Which was very helpful. Dr Eric is convinced that putting FT4 and FT3 right enables the GI tract to function correctly. Dr William Davies (author of supergut) similarly says that grain and sugar free diet plus treating SIBO and SIFO will resolve much of this (how is in his book) Dr Myhill suggests paleo diet first supplements then optimal thyroid replacement then adrenal support is her approach. Good luck finding what works for you 🌱

JAmanda profile image
JAmanda

yes, I have troubles taking tablets etc when I’m under medicated and my voice is croaky.

Daisydoo2 profile image
Daisydoo2 in reply to JAmanda

thank you. This is what I suspect.

Litatamon profile image
Litatamon

Sorry if I have missed this, but have you had an ultrasound of your thyroid to check for multinodular goitre?

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