Enlarged Thyroid

[kelbw77]

Hi had drs today because most recent blood test showed my anti bodies were 409 tsh was 4.34 Dr said this is "normal" and to carry on with 75mcg of Levo but has sent for an ultrasound for my thyroid he did feel it and said it was enlarged, I can feel a lump/tightness in the right side of my throat and have a constant tickly cough is this related?

[SlowDragon Administrator]

Can you add the ranges on these results

When on Levothyroxine, the aim is to increase the dose slowly in 25mcg steps until TSH in under 2. Many need TSH around one

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 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 Levothyroxine

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

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...

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's 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. 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 and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first or buy one online for under £20, just to rule it out

chriskresser.com/the-gluten...

amymyersmd.com/2017/02/3-im...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

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 Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take 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)

If/when also on T3, make sure to take last dose 8-12 hours prior to test

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Come back with new post once you have vitamin results and ranges

[kelbw77 in reply to SlowDragon]

Thank you for the reply

newest blood results

TSH 3.23 range 0.27-4.20

T3 4.5 range 3.1-6.8

T4 17.0 range 12-22.0

B12 195 range 191-663

Serum folate 2.6 range 3.9 -26.8

Serum ferritin 16.8 range 30-400

that's a my recent results did ask about tsh he wouldn't budge just kept saying it was "normal" I do take folic acid and iron they kept away from my Levo

[SlowDragon Administrator in reply to kelbw77]

Your B12 and folate are both extremely low. Suggest you put post on PAS healthunlocked and ask advice

Your GP should be testing for Pernicious Anaemia before starting B12 injections

how long have you been prescribed folic acid? Is this below range result from before starting folic acid?

How much folic acid are you prescribed?

Ferritin is so low you likely need iron infusion. Have you had full iron panel?

How much ferrous fumerate are you prescribed?

SeasideSusie or humanbean are the iron experts. They may pop along with advice

Essential to test vitamin D too

vitamindtest.org.uk

All these vitamins being low is likely BECAUSE of inadequate treatment of thyroid

Gluten intolerance or coeliac disease is common hidden issue and can affect vitamin levels

See GP for coeliac blood test and vitamin D test

Tickly cough can be dairy intolerance

thyroidpharmacist.com/artic...

[kelbw77 in reply to SlowDragon]

Hi I've always suffered with low levels they come up but then drop just as quick?

folic acid is 5mg once per day

Ferrous Fumate 210mg twice a day

I have been tested for coeliac but it's always negative my mum does have coeliac I will ask about the vit d

[SlowDragon Administrator in reply to kelbw77]

As your mum is coeliac you could push for endoscopy

Alternatively just go absolutely strictly gluten free for 3-6 months

See if it helps, stick with it. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

Majority of us with Hashimoto's are gluten intolerant not coeliac. Same result, just doesn't show in coeliac test

chriskresser.com/the-gluten...

amymyersmd.com/2017/02/3-im...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

[kelbw77 in reply to SlowDragon]

Thank you yes have been reading about gluten/dairy free if I started this now would it affect the scan at all or would it be best to have the scan first?

[SlowDragon Administrator in reply to kelbw77]

Endoscopy is a camera down the throat. (Not as bad as it sounds, if you have a sedative)

Yes you need to remain on high gluten diet until endoscopy

NHS may not agree, or it's a long wait

Private endoscopy approx £1600 including consultation

[kelbw77 in reply to SlowDragon]

did have that done a couple of years back but that came back negative

with the gluten I meant would it make a difference to my thyroid that he has now asked to be scanned?

[SlowDragon Administrator in reply to kelbw77]

No. Wouldn't affect Thyroid ultrasound

Just go strictly gluten free

Your Mum likely has plenty of gluten free recipes

[kelbw77 in reply to SlowDragon]

Thank you so much yes she has loads and I'm sure she'd love a gluten free buddy

[SeasideSusie Remembering in reply to kelbw77]

I've always suffered with low levels they come up but then drop just as quick?

When your ferritin level has risen, do you continue with iron tablets as a maintenance dose or stop altogether?

Have you had an iron panel and full blood count done? Do you have iron deficiency anaemia or any other form of anaemia?

Are you under a haematologist for your iron problem?

[kelbw77 in reply to SeasideSusie]

Hi when they do rise (which is rare) the Dr leaves it then bloods 're done a few weeks later and back to square one Dr has always just said "anaemia" no not under anyone now never have ever been referred

[SeasideSusie Remembering in reply to kelbw77]

With your current ferritin level so low, and the continual rise and fall of your levels, I would push for a referral to a haematologist, as SlowDragon has mentioned, your level is below range and low enough for an iron infusion.

Do you get a print out of your results? If not, pop along to the surgery and ask for them. You need to see where your levels lie and just what level your GP is happy with to stop your iron tablets. As your levels have been up and down, one would think your GP would have enough common sense to realise that you need a maintenance dose to keep you at a good level when you reach it, there will be enough evidence in your results for your GP to know that your level will plummet again if the tablets are stopped altogether.

[kelbw77 in reply to SeasideSusie]

Thank you yes I can get a print out I have got the app I'm going to have a look on there see how far back I can see thank you for all your advice

[kelbw77 in reply to kelbw77]

can I add a screen shot? I have some results from the past couple of years doesn't look like they have all been put on but none are normal?

[SlowDragon Administrator in reply to kelbw77]

You may be able to add to the top, original post

If not, start a new post and put the image on there. (Only one photo per post)

B12 and folate are so low, these must be sorted too

Do you have B12 deficiency symptoms?

b12deficiency.info/signs-an...

Ask advice on PAS healthunlocked

Once Pernicious Anaemia tests add done you should get loading B12 injections, but you may be forced to just self supplement sublingual B12 plus daily vitamin B complex

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two). Or Jarrow B-right

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Same problem likely with vitamin D

[SeasideSusie Remembering in reply to kelbw77]

You can add a picture to your first post in this thread. Go to the downward arrow V next to MORE, click on EDIT, follow the instructions for ADD A PHOTO, then click to submit the changes. Make sure you're zoomed in enough for results and reference ranges to be large enough to read.

[kelbw77 in reply to SeasideSusie]

Think I've done it

[SeasideSusie Remembering in reply to kelbw77]

Are all those Ferritin results?

[kelbw77 in reply to SeasideSusie]

sorry yes they are, a bit randomly dated seeing as I generally have bloods every 3/4 months

[SeasideSusie Remembering in reply to kelbw77]

In all that time, was there ever a time when your Ferritin level came into range?

Did you ever have a full blood count or iron panel done?

[kelbw77 in reply to SeasideSusie]

The honest answer is I've no idea it's only recently I've had access to those like that I am going to make an appointment to speak to my Dr regarding this... I'm sure a full blood count has been done not so sure about an iron panel but I will ask for those

[SeasideSusie Remembering in reply to kelbw77]

I don't know what your relationship is like with your doctor, or if you see the same one each time, but I would point out that every single one of those tests is marked abnormal and below range. That you have had iron tablets then they have been stopped. Try and find out what the ferritin level was when they were stopped, ask why you weren't put on a maintenance dose to try and keep you at a decent level.

I would also ask why, with such a poor record of dire results, you haven't been referred to a haematologist, why you've never been offered an iron infusion.

Here is an article on low ferritin and why it's important to address it

restartmed.com/low-ferritin/

Make some notes, tell your doctor that you know what low ferritin can cause, and you want to know why yours has been ignored for so long.

A full blood count will show if iron deficiency anaemia is present.

An iron panel can indicate other anaemia.

[kelbw77 in reply to SeasideSusie]

Thank you so much for that! I will def try to get him to act on this I will keep you updated I really do appreciate all the information you have given

[greygoose]

Just to say that when your doctor says your results are 'normal', all he means is 'in range'. Well, you can see that for yourself. lol It's not rocket science. But, what he doesn't seem to realise is that 'normal' isn't the same as 'optimal'. Just being anywhere in the range is not good enough. You're going to have to insist that you want your TSH down to 1, because you don't feel good when it's any higher. I'm afraid he doesn't know a whole lot about thyroid.

[kelbw77 in reply to greygoose]

it's just such a headache isn't it that we have to fight so much to get our levels right

[greygoose in reply to kelbw77]

Indeed it is. They are so ignorant!

[SlowDragon Administrator]

You need vitamin D tested too via gP or order online

Very likely too low

Needs to be at least 80nmol, but around 100nmol is often better

vitamindtest.org.uk