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Newly diagnosed

Nattycake profile image
33 Replies

Hello,

Just yesterday I have been diagnosed with subclinical hashimotos hypothyroidism. Starting on a dose of levothyroxine 50mg once a day. As my TSH is only slight elevated I was just wondering what I can expect going forward in terms of dosage. I completely get that it will be different for everyone but this is completely new to me and I'm feeling a bit lost!

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Nattycake profile image
Nattycake
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TiggerMe profile image
TiggerMe

As a general rough guide something around 1.6 x your weight in kg = dose T4

Hopefully they have given you 50mcg and told you to book in for a blood test in 8 weeks? When they will likely increase by another 25mcg, aim is to get your TSH around 1 and then it's worth doing a full thyroid panel to see if you are converting well to the active hormone... I'm afraid it is unlikely your GP will do this but a private finger prick test costs around £30

Have they tested your ferritin, folate, Vit D and B12? Did they test your antibodies?

Nattycake profile image
Nattycake in reply to TiggerMe

Thank you very much for your reply. Yes sorry I meant 50mcg. My recent blood results from last week are:

Serum TSH 5.77 (0.35-4.94)

Free T4 12.6 (9.01-19.05)

B12 445 (187-883)

Ferritin 19 (20-204)

Folate 4.2 (3.1-20.5)

Vitamin D 39.9 (50-150)

Antibody test done about 3 months ago:

578.8 thyroid peroxidase (ref range0-9)

Nattycake profile image
Nattycake in reply to Nattycake

Repeat bloods in 3 months :)

TiggerMe profile image
TiggerMe in reply to Nattycake

So you'd benefit from a good B complex to bump up your B12 and terrible folate levels, bit of a minefield so this will help... healthunlocked.com/thyroidu...

You are deficient in Vit D, did they give you a prescription for some?

When buying your own make sure it is combined with K2 as this is important for healthy bones

grassrootshealth.net/projec...

Also deficient in ferritin, are they going to do a full iron panel?

All need to be optimised to make the best use of T4

Positive for autoimmune

Nattycake profile image
Nattycake in reply to TiggerMe

Thank you very much I will take a look at those. They just told me to take 1000iu vit d once a day

They did full blood count and said I'm not anaemic so to take an iron supplement.

TiggerMe profile image
TiggerMe in reply to Nattycake

1000iu won't do much, the calculator thingy is really useful at working out a good loading dose to get you up there, aiming for 100-150, holding dose is more like 2000-3000iu

But they didn't check your serum iron levels? So they have given you some Ferrous Fumerate?.. need to take with Vit C and often more effective every other day if you find it hard on your system many of us use Three Arrows Heme Iron

Nattycake profile image
Nattycake in reply to TiggerMe

No Serum iron levels done from what I can see, just full blood count. They didn't give Me anything just told me to take over the counter stuff for iron so I got some feroglobin tablets (I think that's what they are called) I've got ibs so I'm use to stomach issues unfortunately! Thank you I will take a look at Three Arrows Heme Iron :)

I'm just hoping it is the thyroid issue causing all my random symptoms and awful fatigue and I will start to feel better soon as I'm really struggling at work the last couple of weeks and its making me very anxious!

SlowDragon profile image
SlowDragonAdministrator in reply to Nattycake

Your ferritin level is extremely low (very common when hypothyroid)

Are you vegetarian or vegan?

Heavy periods?

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Suggest you test privately yourself

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Medichecks iron panel test

medichecks.com/products/iro...

meanwhile

Look at increasing iron rich foods in diet

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

List of iron rich foods

dailyiron.net

Nattycake profile image
Nattycake in reply to SlowDragon

Just wondering why a iron panel needs to be done before taking ferritin just out of interest?

SlowDragon profile image
SlowDragonAdministrator in reply to Nattycake

Because it’s possible to have low ferritin but high iron, in which case you couldn’t take iron supplements

eg this post demonstrates perfectly

healthunlocked.com/thyroidu...

Nattycake profile image
Nattycake in reply to SlowDragon

Ah I understand now, thank you 😊

Mixteca profile image
Mixteca in reply to Nattycake

You need an overall picture of your iron stores. My ferritin was low and I found out my iron was significantly deficient despite taking iron supplements for years. I needed an infusion to get levels up quickly as I was also on frequent B12 injections. An iron expert would give you an informed opinion, whereas your GP will not - they simply don't have that training.

SlowDragon profile image
SlowDragonAdministrator in reply to Nattycake

B12 445 (187-883)

Folate 4.2 (3.1-20.5)

Couple weeks after starting vitamin D and magnesium look at improving B vitamins starting with B12

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

TiggerMe profile image
TiggerMe in reply to Nattycake

That is really poor treatment but then again the stuff they hand out is pretty awful!! They really should check your serum iron levels though... I see SD has swooped in with loads of useful stuff so I'll just say the threearrowsnutra.com/en-uk/...

Is a bit full on but works really well FRANKLIN will save you 10% and if you buy 3 bottles it's free shipping, it seems a bit dear but works out better than any of the others and won't add to your stomach issues 🤗

healthunlocked.com/thyroidu...

Nattycake profile image
Nattycake in reply to TiggerMe

Yes I don't expect anything less unfortunately! Thank you for the link 😊 and your helpful advice

SlowDragon profile image
SlowDragonAdministrator

Only add one vitamin supplement at once ….

Your GP was actually obligated to prescribe vitamin D as your level is insufficient

GP should prescribe 1600iu everyday for 6 months

But with autoimmune thyroid disease you may benefit from higher dose…..perhaps 2000iu

NHS Guidelines on dose vitamin D required

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

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

Some areas will prescribe to bring levels to 75nmol or even 80nmol

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...

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

pubmed.ncbi.nlm.nih.gov/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 when supplementing

Can test via NHS private testing service

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.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

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

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator

Looking at the links you added on your profile ….you presumably have asthma

Asthma and being hypothyroid

ncbi.nlm.nih.gov/pmc/articl....

ncbi.nlm.nih.gov/pmc/articl...

Nattycake profile image
Nattycake in reply to SlowDragon

Thank you very much for all the information you have provided, I will have a read through all the links as I want to do everything I can to make myself feel as normal as possible. I am not a vegetarian or vegan.

My periods lately have become a bit heavier.

Yes I have asthma, IBS and anxiety.

Interestingly my doctor told me to start taking folic acid now as well!

SlowDragon profile image
SlowDragonAdministrator in reply to Nattycake

Folic acid = cheap version of folate

Ideally you should start B12 BEFORE adding vitamin B complex (contains folate)

Are you still taking Lansoprazole (a Proton Pump inhibitor…..PPI) used to treat high stomach acid

Acid reflux is common hypothyroid symptom ……caused by LOW stomach acid. Similar symptoms, but different treatment

you can’t just stop a PPI …..

DON’T make more than one change at a time

As you slowly increase levothyroxine and improve vitamin levels acid reflux should reduce and stop anyway

So just to be aware of this……but it should start to improve as you become less hypothyroid

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...

stopthethyroidmadness.com/s...

thyroidpharmacist.com/artic...

How to test your stomach acid levels

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

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

huffingtonpost.co.uk/laura-...

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

Useful post and recipe book

healthunlocked.com/thyroidu...

Ppi like Lansoprazole or Omeprazole will tend 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-...

onlinelibrary.wiley.com/doi...

sciencedirect.com/science/a...

NHS doesn’t yet acknowledge low stomach acid really exists

zoe.com/learn/low-stomach-a...

janeroar profile image
janeroar in reply to SlowDragon

Huge appreciation to you SlowDragon The information you share is so helpful to everyone.

Emaych61 profile image
Emaych61 in reply to SlowDragon

Just an add on to the comment re not just stopping PPIs. These are medications that really do need to be weaned off and some people (I was one) can still get rebound symptoms even after a short course (thirty days). Believe me, it is not pleasant.

It is not uncommon for asthmatics (particularly long term asthmatics) to develop reflux symptoms though as far as I am aware no link between the two conditions has been found despite research into the subject (if anyone knows differently please feel free to correct me on that).

Nattycake profile image
Nattycake in reply to Emaych61

Thank you for your reply. I am no longer on omeprazole or lansoprazole it was for a few weeks last year following steroids and antibiotics but saying that I do occasionally take a one off omeprazole if I get reflux symptoms, it is something I have suffered on and off with since being a teenager.

Emaych61 profile image
Emaych61 in reply to Nattycake

You have my sympathy - it’s most unpleasant (I’m just over a few days of silent reflux symptoms brought on after eating a dish which I’ve had many, many times with no issues). Add to that an asthma flare and it’s not been a great past week.

Have you had 24hr pH monitoring? Worth doing if you haven’t but you’ll need to be referred to a consultant gastro to get it. It was having that done (after suffering for several years) which revealed that whatever was causing my reflux symptoms, it wasn’t excess levels of stomach acid. They’d done gastroscopies to check for a hiatus hernia and also tested for gastroparesis- both revealed nothing. At the moment I’m down as having a hyper sensitive GI tract, but when I last saw my gastro cons (nearly fourteen months ago - sigh!) a potential problem with my thyroid hadn’t been picked up. The fact that it looks as though I might have developed hypothyroidism may cause a rethink.

SlowDragon profile image
SlowDragonAdministrator

I've got ibs so I'm use to stomach issues unfortunately

gut issues extremely common hypothyroid issues

Often dramatically improved by gluten free diet

GP should have done coeliac blood test ….have they?

As per NICE guidelines

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

Or buy test online £20 BEFORE considering trial on gluten free diet

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

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.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/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

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.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

Nattycake profile image
Nattycake in reply to SlowDragon

I am assuming this is the blood test? I really struggle to find what triggers my IBS other than alcohol but I will give anything a go because the stomach issues on their own are bad enough! Thank you for the information 😊

Blood results
SlowDragon profile image
SlowDragonAdministrator in reply to Nattycake

So yes …negative for coeliac disease

Consider trialing strictly gluten free diet in a few weeks time

Initially spend 2-3 weeks thinking about what you would eat at each meal instead of gluten

It seems a bit daunting at first, but there’s loads of GF alternatives

A lot of GF bread is not very good, but a few are excellent, especially as toast (in a separate dedicated GF toaster)

Read ALL labels. Gluten hidden in loads of surprising places

There’s no point being “almost GF”

It does need to be strictly GF to be effective

Lots of Gluten Free larger and beer available

Ocado do masses of GF foods

Nattycake profile image
Nattycake in reply to SlowDragon

Thank you I will certainly give it a good go. Its the pasta that I'm most worried about and my husband!

SlowDragon profile image
SlowDragonAdministrator in reply to Nattycake

Gluten free pasta ……you can’t tell the difference

It takes a bit longer to cook

Emaych61 profile image
Emaych61 in reply to Nattycake

Join the club - I’ve never managed to pin down causes of my IBS other than sparkling/fizzy drinks or any confectionery with an excess of sugar; those will set it off every time.

Emaych61 profile image
Emaych61 in reply to Nattycake

As SlowDragon has said, yup - that’s it. One thing to check though (because I’ve heard of a number of occasions when patients being tested for coeliac weren’t warned about this prior to testing): did they check that you had been eating a diet which contained gluten daily (at least one portion - as in slice of bread, pasta etc) for six to eight weeks prior to having the test?.

Nattycake profile image
Nattycake in reply to Emaych61

They didn't specifically ask me, although I don't eat much bread in the last few years my diet is predominantly pasta!

Emaych61 profile image
Emaych61 in reply to Nattycake

”Like” as in that should be fine. I’ve read of accounts where people weren’t told that, got tested and came back negative because they were already trialling (or had trialled close to when they had the test) a gluten free diet. It takes time for the antibodies to build up enough for them to picked up in a blood test, so if you go gluten free prior to having the blood test done the chances are very high you’ll get a negative result even if you are actually coeliac.

Nattycake profile image
Nattycake in reply to Emaych61

Hopefully it was accurate then! I think it is likely IBS but it's a pain nonetheless.

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