Newly diagnosed hypothyroidism.: Not been feeling... - Thyroid UK

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Newly diagnosed hypothyroidism.

DitzyGrandma profile image
11 Replies

Not been feeling great for past couple years. Tired and grumpy, weight gain, aches and joint pain, feeling cold but having night sweats in night. Put it down to menopause. Due to hearing not great had checkup at Dr's. I have tinnitus and ears were clear. Had blood tests 22/6/23 - Thyroid Funtion Test - result Serum TSH 33.52 [0.35-4.94] above high. Serum free T4 7.4 pmol/L [9.00-19.0] below reference. Dr requested antibody test 3 months later. Result 336.47 iu/mL[<5.61] above high. I was prescribed Levothyroxine 25mg. How long will it be before l start to see an easing in symptoms? Is this hereditary as mum and dad didn't have thyroid problems. Mum was diabetic and dad had heart disease (his life style probably). I am also pre diabetes and awaiting a follow up blood test my last result was HbAlc 45 mmol/mol. Any advice will be appreciated as l try to understand my symptoms and diagnosis 🙃

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SovietSong profile image
SovietSong

Those numbers are very low, t4 not even near the lower end of the range and can only imagine how your feeling with tsh of 33.The 25mcg is only the starting dose, it is then usually tested again roughly every 8 weeks or so and increased in increments of 25mcg until symptoms have gone.Most people end up somewhere between 100-150 daily.All those symptoms you mention I too had when woefully undermedicated on Levo.The weight gain, joint pain, feeling cold and ear pain.I wouldn't be very clued up on antibodies and stuff but hopefully someone will be along soon to point you in right direction.

SlowDragon profile image
SlowDragonAdministrator

Presumably you are older than 65?

Standard starter dose levothyroxine is 50mcg …..but starting on 25mcg if over 65 years old

Hormones don’t work quickly, how long since you started on 25mcg daily

Bloods should be retested 6-8 weeks after each dose increase

You will need several increases in levels over coming months

Typically dose is increased in 25mcg steps

Which brand of levothyroxine are you currently taking

Always take levothyroxine on empty stomach and then nothing else apart from water for at least an hour after

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

GP should test vitamin D, folate,, ferritin and B12 and coeliac blood test too

If not been tested yet, request included at next test

ALWAYS book early morning test, ideally before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

DitzyGrandma profile image
DitzyGrandma in reply toSlowDragon

Thank you for your advice, l am 60 years old, my Vit D is normal but l will ask for further testing on what you suggest. My next appointment is in December. I have been on Levo for 9 days. Thanks for heads up about not taking medication before testing 🙂

SlowDragon profile image
SlowDragonAdministrator in reply toDitzyGrandma

Serum TSH 33.52 [0.35-4.94] above high.

Serum free T4 7.4 pmol/L [9.00-19.0] below reference

So at 60 years old, with very high TSH and below range Ft4 your doctor could/should have started you on 50mcg levothyroxine

See how you get on ….starting on just 25mcg can make you feel worse…..but grit your teeth and hang in there ….get next blood test and then get dose increase up to 50mcg

and several increases after that over next year

my Vit D is normal

always get actual results

Are you currently taking any vitamin D supplement

On levothyroxine we need OPTIMAL vitamin levels especially vitamin D

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 with Hashimoto’s, 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 via NHS private testing service when supplementing

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...

DitzyGrandma profile image
DitzyGrandma in reply toSlowDragon

Thank you, you have given me lots to read, can l ask what does thyroid do with Coeliac, l have heard of it but not sure how it presents. Thanks in anticipation 🙂

DitzyGrandma profile image
DitzyGrandma in reply toSlowDragon

Just another question, could my GP have started me on 25 mg due to my dad dying of heart attack? I was told when l moved GP's that unfortunately l am from unhealthy parents. My dad smoked and was overweight and not mobile due to arthritis in knees. I have arthritis in one knee, don't smoke but now l am classed as overweight due to weight gain over past two years

SlowDragon profile image
SlowDragonAdministrator in reply toDitzyGrandma

Well done on stopping smoking

How long since you stopped smoking

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

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

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

Hashimoto’s and leaky gut often occur together

Post discussing gluten

healthunlocked.com/thyroidu...

DitzyGrandma profile image
DitzyGrandma in reply toSlowDragon

Thank you, l haven't smoked apart from passively from parents, my dad was a heavy smoker, l probably didn'tmake it clear. My brother has Crohn's disease which he is just about managing, l will get tested for gluten intolerance and change my diet. 🙂

Sleepman profile image
Sleepman

Hi, I am a year in and had even higher tsh and no T4. I was ok in a few months but it takes a longer time for things to sort out. I had got upto 125 mg by then and finalised on 150 mg. I started on 50. I am 90 kg and mid fifties.Push for earlier blood test if you do not have heart issues. I just booked it through reception.

Most people are ok. A few have complications and need more help. This forum can be a bit scary but is so helpful. GPs not generally very knowledgable.

Be kind to yourself.

DitzyGrandma profile image
DitzyGrandma in reply toSleepman

Thanks for your advice, l have learned that regular blood testing varies some say 6-8 weeks but my GP has requested 12 weeks. I can ask him questions now from the replies l have received. A friend recommended this forum and l am so glad she did.

HealthStarDust profile image
HealthStarDust in reply toDitzyGrandma

I’m afraid your GP doesn’t sound like they know what they are doing. Starting dose should be 50mcg or full starting dose based on weight (although be warned people have mix results on starting on a full starting dose). As for 12 weeks for retest, again that’s taken straight from NICE guidelines which makes me definitely think they don’t know what they are doing. With that said, it’s far to say people do report a change in symptoms as far as out 3 months, however on just 25mcg I imagine you are actually going to feel a lot more worse.

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