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bekind2021 profile image
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Hi all - I'm new here and also very early on in my thyroid journey. I first got tested a couple of years ago because I was super tired and showed up as borderline. My doctors were reluctant to put me on medication and said they'd retest every six months and see how things went. I went along with it for a while (silly me, I thought the doctors knew best!) until a friend of mine said her daughter had been through something similar, just being told they were borderline, etc. Anyway, the next time my test rolled around and it showed borderline again, my doctor (a different doctor, since my other one had since retired!) said the numbers (I didn't really know what they meant at the time, but have educated myself since) were going in the wrong direction, and that if I really felt awful we could try medication. I was started on 25mcg of Levo and very quickly started to improve. I mean, I'm not running marathons or anything, but I'm not quite as tired and some dizziness I'd started to develop has thankfully gone away. My symptoms now include tiredness, acid reflux, post nasal drip, sore throats, anxiety, tightness in my chest.

Since then I pushed for a full thyroid panel which has also shown I have Hashimoto's. Unfortunately my doctor (I think he's quite newly qualified) doesn't seem to know a lot about that side of things, and last time my bloods were done they didn't test my TSH, so I don't know if the meds have helped in that regard. So he's written to an endo for advice (not sure why, it seems the guidelines say if I'm still symptomatic to increase the dose), and also to a rheumatologist because I possibly also have Sjogren's disease (I've had dry eyes and dry mouth - these issues pre-date the thyroid stuff).

So that's some background. I'm still learning about this stuff, and also to advocate for myself. I'm now keeping a spreadsheet of my blood test results and have access to them via the NHS app. Next time I go in I'm going to ask for a printout of my results going back further, since I can only access the last 6 months.

I'm sure I'll have lots of questions going forward. One I have for now is: does anyone else experience the sore throat thing? It's so odd - I can have a sore throat (it's not Covid, this has been going on for months, and I do take regular lateral flow tests) in the evening, and it's gone by morning. The other week I had a sore throat, runny nose and feeling pretty crappy. Took a Covid test to make sure - negative. Drank plenty, had lozenges. Over the course of the day/evening the sore throat became so bad I actually took some painkillers. Again, by morning, it was gone as though it had never been there. Completely bizarre, and my doctor claims it couldn't possibly be to do with my thyroid. Some of my research suggests otherwise - that it could have been a Hashimoto's "attack". Anyway, it seems there are lots of knowledgeable people in here who might be able to shed some light on this weirdness.

Also, for people having multiple symptoms, including acid reflux (I had an endoscopy last week which showed nothing concerning), do you find most of these symptoms reduce or resolve when you get to a point that you're on the right level of medication?

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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Yes, sore throat common hypothyroid symptom

How much levothyroxine are you currently

Levothyroxine doesn’t “top up” failing thyroid, it replaces it

Dose levothyroxine should be increased slowly upwards in 25mcg steps until on or near full replacement dose of approx 1.6mcg levothyroxine per kilo of your weight

guidelines on dose levothyroxine by weight

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

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

bekind2021 profile image
bekind2021 in reply to SlowDragon

I'm still on 25mcg of levo. I was hoping GP would increase the dose, but has instead written to the endo for further advice.

SlowDragon profile image
SlowDragonAdministrator in reply to bekind2021

What were most recent results

You are legally entitled to copies of your blood test results and ranges

See/contact different GP and insist on increasing levothyroxine to 50mcg

50mcg levothyroxine is standard STARTER dose

Print out guidelines on dose by weight

Be ready to challenge GP if they are reluctant to increase dose

Which brand of levothyroxine are you currently taking

bekind2021 profile image
bekind2021 in reply to SlowDragon

My most recent results didn't test TSH, bizarrely. And annoyingly. I have the last two results below. I have an appointment in a couple of weeks with him for something else, so I intend to challenge him then and request an increase, as well as ask for a printout of my test results prior to the six months ones I can access myself. I can't remember which brand I'm taking. Can't check at the moment as they're in the bedroom and my partner is in there asleep as he works nights, so I don't want to disturb him. This is the second brand, though, and the next lot I'll be starting next week has gone back to the original brand. I didn't notice any difference in symptoms on switching between the brands, though.

4th May 2021 TSH 8.36 [0.27-4.2]

T4 13.1 [12.0-22.0]

24th August 2021

TSH Not tested!

TPO antibodies 273.0 [0.0-34.0]

T4 14.3 [12.0-22.0]

T3 4.5 [3.1-6.8]

SlowDragon profile image
SlowDragonAdministrator in reply to bekind2021

24th August 2021

TSH Not tested!

TPO antibodies 273.0 [0.0-34.0]

T4 14.3 [12.0-22.0]

T3 4.5 [3.1-6.8]

Ft4 is only 23% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Dose of levothyroxine is increased slowly upwards in 25mcg steps until Ft4 is typically at least 60-80% through range

Politely and firmly request/insist on 25mcg dose increase in levothyroxine

High thyroid antibodies confirms autoimmune thyroid disease

Essential to test vitamin D, folate, ferritin and B12

Request GP tests these now

bekind2021 profile image
bekind2021 in reply to SlowDragon

I'll do my best!

SlowDragon profile image
SlowDragonAdministrator in reply to bekind2021

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 (Ft4) 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)."

(That’s Ft3 at 58% minimum through range)

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

Ft4 at 14 is far too low

bekind2021 profile image
bekind2021 in reply to SlowDragon

Thank you. Just emailed.

SlowDragon profile image
SlowDragonAdministrator

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Low vitamin levels common as we get older too

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)

Is this how you do your tests?

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

List of private testing options

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 by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies 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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Gluten and Hashimoto’s

Assuming you aren’t on strictly gluten free diet yet

As you have Hashimoto’s have you had coeliac blood test done yet

If not request coeliac blood test BEFORE considering trial on strictly gluten free diet

bekind2021 profile image
bekind2021 in reply to SlowDragon

Yes I've been tested for coeliac, that was done to eliminate it re: my acid reflux. Negative.

I didn't know much of the info beforehand, but I'll bear it in mind for future blood tests. I've only had them via the NHS so far. I will see how I get on in that regard before considering private tests.

SlowDragon profile image
SlowDragonAdministrator in reply to bekind2021

Acid reflux is EXTREMELY Common hypothyroid symptom due to LOW stomach acid

Frequently misdiagnosed as HIGH stomach acid

Acid reflux Likely to improve has dose levothyroxine is increased slowly upwards in 25mcg steps (retesting 6-8 weeks after EACH dose increase

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

healthygut.com/articles/3-t...

naturalendocrinesolutions.c...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

Protect your teeth if using ACV with mother

healthunlocked.com/thyroidu...

How much do you weigh in kilo?

Changing to gluten free diet frequently helps reduce acid reflux too

Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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

Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out

lloydspharmacy.com/products...

If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)

If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.

If no obvious improvement, reintroduce gluten 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...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

hypothyroidmom.com/how-to-l...

Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.

bekind2021 profile image
bekind2021 in reply to SlowDragon

Docs have just insisted it's high stomach acid and given me lansoprazole to take when I have a flare. The flares have decreased in frequency and intensity since I've been on levo. Following info on Thyroid UK website I also take a supplement of selenium with zinc, which has also helped. I'm also on various other supplements and have been for a while anyway, to do with my dry eyes. Feel like I'm going round in circles. If I can just get my bloods in line I can then start addressing other stuff. If I change several things at once I won't know what's made a difference.

SlowDragon profile image
SlowDragonAdministrator in reply to bekind2021

Most GP’s are clueless about interconnection between thyroid and gut

Being hypothyroid frequently causes low stomach acid and this has virtually identical symptoms to high stomach acid….but very different treatment

Lansoprazole is to treat high stomach acid and tends to lower vitamin levels even further

PPI will lower vitamin levels even further

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

webmd.com/heartburn-gerd/ne...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes

gut.bmj.com/content/early/2...

Iron Deficiency and PPI

medpagetoday.com/resource-c...

futurity.org/anemia-proton-...

bekind2021 profile image
bekind2021 in reply to SlowDragon

Okay. I don't tend to take the lanso anyway unless I have a flare up. But now I see it's counterproductive so won't take any at all.

RoboTh profile image
RoboTh

My throat has been problematic for a few years whilst being borderline. I have not suffered since starting levo. My nasal drip remains tho. I often feel like I'm coming down with something aching all over which hasn't resolved yet. Tends to be when I've over exerted myself and I have to rest for a few days x hope this helps x horrid feeling not right alot of the time

bekind2021 profile image
bekind2021 in reply to RoboTh

It's a nuisance, isn't it? Perhaps it will resolve when (fingers crossed!) my dose is increased. Do you also get a feeling (bear with me, it's kind of hard to describe) not that your nose is blocked as such, but that the passages are narrowed? I get it a lot and blowing my nose doesn't help. As such, I suspect I often sleep with my mouth open to breathe, which is likely not helping the sore throats as I snore, too!

RoboTh profile image
RoboTh in reply to bekind2021

I have a deviated septum so yes but maybe ask GP to consider a nasal spray or ent referral x

bekind2021 profile image
bekind2021 in reply to RoboTh

What sort of nasal spray? I already have one for my hayfever/allergic rhinitis. Trouble is if I take for too long a period of time I get nosebleeds.

RoboTh profile image
RoboTh in reply to bekind2021

Same re nose bleeds I use sterimar now and generic loratadine tablets x

bekind2021 profile image
bekind2021 in reply to RoboTh

Thanks. Yep I take antihistamines too.

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