Nowhere left to go with my Thyroiditis.

[RobSouthCoastuk]

Hi, new to this message board.

I was a healthy early 20s guy that had never even been to see a GP before. One morning I woke up with a terrible sore throat and tightness of the throat area.

After a few days with little improvement I booked an appointment with my GP. After a few visits of ‘come back in 2 weeks if it’s not gone away’ they thought I had acid reflux and I began ‘treatment’ for that.

This made no different at all and after what now was a year later and my throat was still sore, voice horse and a tight feeling.

I then was sent to an ENT and had a blood test. The blood test came back as ‘normal’ and the NHS ENT said my throat ‘looked very red’ but nothing out the ordinary. So I was sent back to the GPs with no progress at all.

Fast forward 10 years and I’m still in the exact same situation. What seems to bring on the pain from my thyroid is my ‘using’ my throat, so talking, eating or breathing heavier from exercise). This then remains and gets worse for the rest of the day. I’m the morning it’s settled slightly usually and then when I ‘use’ my throat again it’s a cycle of inflammation again.

Late 2018 I saw a private ENT and had a ultra-sound/blood test again. The blood test came back as ‘normal’. The ultra sound results said that I have Thyroiditis. In my naivety I was excited to know it wasn’t all in my head and now I had something they can treat. My follow-up consultation with the same Private ENT was depressing when he said there’s nothing he can do and just sent me back to my GP (now of which has semi-retired, so I’ve been passed between locums and temporary staff GPs at the practice). They at least have tried me on some NAIDs under instruction from the private ENTx which have had no effect at all.

It’s now 1.5 years on from when I found out what’s causing my DAILY pain and discomfort and I’ve hit a brick wall with what’s causing the Thyroiditis.

In total i’ve had 4 Thyroid blood tests that come back as ‘normal’. I’ve always since day 1 said to the doctor it felt like a viral or bacterial infection that just isn’t shifting on its own.

It’s so hard to know where to turn next. I can barely talk without hoarseness, discomfort and pain from my throat as thyroid, breathing isn’t as easy as it should be.

My GP won’t do anything unless told by an ENT and the ENT doesn’t seem to understand the severity of the problem.

I’m from the Portsmouth UK, south coast area so if anyone would know anywhere for me to turn that would be so amazing and I’d be forever grateful. As currently not 1 minute of my life is not being ruined by this pain I have.

Thanks so much in advance.

Rob 🙂

[Lora7again]

Do you have your "normal" blood results to share with us? We need the TSH, T4 and T3. Also were any antibodies tested? The reason I ask is because a lot us have been told we have normal blood results when infact they were not. I was told mine were "normal" for over 2 years until I joined Elaine Moore's site in the US and she told me my TSH was suppressed at 0.002 so I was hyperthyroid. I have a multinodular goitre and I am given ultra-sounds every couple of years to check that none of my nodules have increased in size. My throat sometimes feels sore and I do choke on my food if I am not careful because of my enlarged thyroid. You can read my story on my profile page if you are interested. Just to add that it sounds like you might have a goitre like me.

nhs.uk/conditions/goitre/

[RobSouthCoastuk in reply to Lora7again]

Hi, thank you for the quick reply. I’ve just added a screenshot of one of the more recent blood test results I’ve had. Thank you 🙂

[SlowDragon Administrator]

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

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

Far too frequently Medics only test TSH which is completely inadequate

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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

Low vitamin levels also cause symptoms on their own too

Ask GP to test vitamin levels and thyroid antibodies

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 .

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/getting-a-dia...

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...

Add any results and ranges you have or come back with new post once you get Full results

Acid reflux is extremely common hypothyroid symptom

If ultrasound shows you have Hashimoto’s you should be started on levothyroxine

[RobSouthCoastuk in reply to SlowDragon]

Hi, thank you for the quick reply. I’ve just added a screenshot of one of the more recent blood test results I’ve had. Thank you 🙂

[greygoose in reply to RobSouthCoastuk]

That's a thyroid panel, and your nutrients are very low. But, I imagine you have problems eating.

But, it sounds as if you don't know what the ENT was testing for. Just saying you had a blood test doesn't tell us anything, because there are thousands of things they could test for. What you need to do is get copies of all these blood tests and find out exactly what they tested for, and exactly what the results were - ranges of vital importance. And, when you get them all, post them here and let's have a look. We're not doctors, but something might jump out at someone that will give a clue. Otherwise, without all the blood test results, you're just going to go on groping in the dark.

In the meantime, you need to raise those nutrient levels back to optimum - especially the B12! - or you're going to feel worse and worse, and if you do have an infection - which is perfectly possible - you won't be able to fight it. If you have trouble swallowing, most things come in a spray, these days, which will spare your throat. And, you need lots and lots of vit C, which you can buy in powder form and make a drink. I don't think there's a vit C spray, yet. But it will probably come.

[SlowDragon Administrator in reply to RobSouthCoastuk]

So what’s your diet like?

Are you vegetarian or vegan?

Vitamin levels are all low....very common when hypothyroid....which your scan suggests you are

First step is to get all four vitamins optimal by supplementing

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/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

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

NHS Guidelines on dose vitamin D required

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

But with suspect thyroid issues 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 probably 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

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamins

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Active B12 is very low...anything under 70 is suspicious and you probably want to get further testing,

GP should test for Pernicious Anaemia...but if not you can get further testing here

nutris.viapath.co.uk/pages/...

Do NOT supplement any B vitamins until had further testing done

Once tested come back with new post

Likely to need vitamin B complex and perhaps either B12 injections or daily sublingual B12 lozenges

Low B12 symptoms

b12deficiency.info/signs-an...

B12 injections during Covid crisis

pernicious-anaemia-society....

Once had further tests

Folate is very low

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low vitamin D and low B vitamins may be linked as explained here

drgominak.com/sleep/vitamin...

In YouTube video when Dr Gominak talks about vitamin D levels ...vitamin D at 40ng/ml (USA units) is equal to 100nmol (UK units)

youtu.be/74F22bjBmqE(Not working as expected?)

Ferritin looks ok ...but as a bloke you would expect ferritin a bit higher

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

dailyiron.net

Daily vitamin C may help with sore throat

Acid reflux is frequently due to LOW stomach acid

You mention treatment for acid reflux...usually GP assumes it’s high acid and prescribes PPI like omeprazole....which doesn’t help or makes things worse

Are you taking any ppi ?

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

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

naturalendocrinesolutions.c...

Ppi

pulsetoday.co.uk/clinical/m...

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

Getting FULL thyroid and vitamin retested in say 2-3 months after working on improving low vitamin levels

[Wetsuiter]

are you getting these bloods done early morning? on an empty stomach?

[Lora7again]

Your thyroid function blood tests do look normal to be honest. Have you been investigated for acid reflux? I used to have oesophagitis and I had a sore throat because of it and I took ranitidine for a long time to treat it. I didn't eat as well as should of when I was suffering with my sore throat because it was too painful. Are you eating a good diet? Your vitamin D, Ferritin, Folate and B12 could be higher as well because they can cause symptoms.

[humanbean]

Optimal levels are suggested as follows :

Ferritin (iron stores) : mid-range i.e. 215 or a little bit over with the range you've given. Iron and ferritin are complicated, and just deciding on the basis of a ferritin result whether you need more isn't a good idea, since iron can be poisonous in the wrong amounts and under certain circumstances. See these links :

rt3-adrenals.org/Iron_test_...

healthunlocked.com/thyroidu...

medichecks.com/iron-tests/i...

Iron and ferritin are best tested with a full iron panel before considering supplementing. It can be tested with a finger prick test without seeing a doctor. Iron supplements as prescribed by UK doctors can be bought in pharmacies without a prescription - you only need permission from a pharmacist. I usually buy my own from Tesco Pharmacy or from Lloyds Pharmacy, but if you get refused in one pharmacy just try elsewhere.

If you get an iron panel done post the results on here in a new thread and ask for feedback.

Vitamin B12 : Your result is abysmal. The minimum you need is about 70, but optimal is over 100.

Folate : Minimum of double figures, although personally I prefer a result which is about 20(ish), possibly even a little higher. You need good levels of folate for the body to be able to make use of any B12 you have.

Before considering supplementing for B12 and folate you need to be tested for Pernicious Anaemia if you haven't already been tested. You might do better to inject. Many people learn to inject themselves. You can get advice on the Pernicious Anaemia Forum on HealthUnlocked :

healthunlocked.com/pasoc

Vitamin D : Optimal is usually given as either 100 - 150 nmol/L or 125 nmol/L.

You need to supplement with vitamin D3 not vitamin D2. Doctors wouldn't prescribe for you since your result is too high for them to be interested, but vitamin D supplements are easy to buy online.

Vitamin D increases the absorption of calcium from the diet. You need that calcium to be absorbed by bones and teeth, you don't want it to end up lining your arteries. To help that to happen you need co-factors which are vitamin K2 and magnesium. Read replies by SeasideSusie to others on the subject.

...

Since you have thyroiditis I was wondering if anyone had ever treated you with antibiotics? You might actually have an infection in your thyroid.

It might be worth asking your doctor for a Full Blood Count to be done. It might show up evidence of an infection going on somewhere in your body. Click on all the + signs on this link for more information :

labtestsonline.org.uk/tests...

If your doctor won't oblige then you could buy your own :

medichecks.com/tests/fbc-fu...

...

Zinc is essential for the proper functioning of the immune system. You could try and get your doctor to test zinc and copper. Zinc and copper have a relationship with each other - low zinc goes hand-in-hand with high copper, and high zinc goes together with low copper. Do some research, looking for info on "zinc and the immune system". Many people with thyroid problems have low zinc and high copper.