Advice on current symptoms

[DaisyTed]

Hi! I’m new here and feel like my eyes have been opened a lot from reading everyone’s experiences! I am 44 and was diagnosed with hypothyroidism following the birth of my son 11 years ago. I have been taking 50mg and 75mg levothyroxin on alternate days and would say I haven’t felt particularly well for a long time - suffering hair loss, anaemia, fatigue and muscle stiffness as well as memory impairment. In the past couple of years digestive issues have become a significant issue. I tested negative for coeliac disease (despite my mum having it), but I find improvement in muscle stiffness and digestive issues (stomach pains, constipation and bloating) when I cut out gluten. I have only recently realised that my symptoms could be related to hypothyroidism, as my doctors check my levels roughly every 6 months and I’m told I’m in normal range - pretty sure they are not checking the full range though. I feel I need to look more into this! Advice on what to say to my GP and how to proceed would be gratefully appreciated. Sorry for long post! 😀

[tattybogle]

Hi DaisyTed, before you see GP for another round of " your thyroid results are normal now"

you should find out what the actual lab results are, that they have been looking at .

so go to the receptionist at GP and confidently (like you do it everyday ) ask for "a printout of my latest thyroid tests results please from 'x' date " ~ (including result and lab range , not just the opinion bit that say's 'normal ')

You want :

TSH (Thyroid Stimulating Hormone) result and [reference range ] eg 14.3 [12-22]

fT4 (FreeT4 / thyroxine) result and ref range .. (may or may not have been tested )

fT3 (Free T3 ) result and ref range .. ( very unlikely to have been tested , but very useful to know result if it was , so worth asking )

You have legal right to see these as long as a GP has already seen the results . The receptionist may not be sure what to do ,or not sure if it is allowed , and may say "i'll need to check with the Doctor first"

. if they say that, then say "thanks, i 'll come back in a couple of days to pick them up ".

The may ask what you want them for , or, as i had last week "are these for you ?" they shouldn't really be asking this, but if they do, just say " they are for my records"

Then you can post them on here and we can help you understand them , and give you any advice needed as to what to discuss with GP.

[DaisyTed in reply to tattybogle]

Hi tattybogle, thanks very much - I will do that indeed. Will really appreciate any feedback on the results- many thanks for your kind reply!

[SlowDragon Administrator]

Having been left inadequately treated you likely have very low vitamin levels

Once you get copies of most recent results we can advise on next steps

Do you know if you have ever had thyroid antibodies tested. Should have been tested at diagnosis 11 years ago

The fact your GP tested for coeliac, and your Mum is coeliac it’s HIGHLY likely your hypothyroidism is autoimmune

Low vitamin levels are extremely common with autoimmune thyroid disease

You have been left on very low dose levothyroxine…..unfortunately far from uncommon

Come back with new post once you get results from receptionist

[DaisyTed in reply to SlowDragon]

I was diagnosed with vit D deficiency a few years ago. Since then I had been taking vit D supplements, but realised they were contributing to insomnia so had to stop taking them. Since having anaemia last year I take Floradix iron & vitamin tablets daily, which I feel have helped somewhat. That’s so interesting about the autoimmune link… when I ask for my last thyroid results I will also ask if I’ve ever had thyroid antibodies tested. I was referred to and saw an endo at the time, so hopefully these results will be there and I will post again. Many thanks 🙏

[SlowDragon Administrator in reply to DaisyTed]

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

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

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

With autoimmune thyroid disease we frequently need to be strictly gluten free and dairy free

ESSENTIAL to test vitamin levels at least annually and maintain at optimal levels

We frequently need much higher dose Vitamin D than typical and important to also supplement magnesium

Multivitamins are never recommended on here. Most contain iodine not recommended for anyone on levothyroxine especially with autoimmune thyroid disease

[tattybogle in reply to DaisyTed]

just a heads up re. getting result from receptionist ~ it's best keep it simple and quick if using this route for printout of 'latest' results ,.....if you ask for very old/ obscure antibody results that are harder to find in the record they may say not possible /too busy, and ask you to to set up historic access on-line (if they have it yet) , or use S.AR. (Subject Access Request) both of which take a few weeks to sort out and authorise .

if you need to use SAR to get access to old records you need to make sure you ask for everything you are likely to want all at once ,as they will not do it twice (it take them ages to go through record and redact the 3rd party info they must take out).

So if you can't find out if you had a positive TPOab result this time , don't worry , it's not that important for now .

it's most useful for helping people get started Levo treatment , but since you are already on levo , finding out it's positive won't change much .. we are already 90 % certain it is autoimmune ..because most people's is, and having history in family makes it even more likely.

[DaisyTed]

Every day’s a school day! Learning so much on here- thank-you! Ok I’ll not ask about that. I had a goitre - does that mean it’s definitely Hashimoto’s?

[tattybogle in reply to DaisyTed]

hypo ...... goitre ..... coeliac mum ,.... better off gluten.... went wrong after a pregnancy/ birth

if that is not hashimoto's .. i'll eat your hat (i can't eat mine as i've been wrong so often i've got no hats left to eat )

[shaws Administrator]

Welcome to our forum and members are very helpful and many are very knowledgeable. I am sure that you will find the benefit of joining our forum and it will enable you to recover your health.