Don't know where to turn...: I am new on here as... - Thyroid UK

Thyroid UK

137,137 members160,815 posts

Don't know where to turn...

e186 profile image
e186
15 Replies

I am new on here as I am at the end of my tether. I have Hashimotos and was diagnosed some 6.5 years or so ago. everything seemed to make sense then and the medication helped. However the last year/ 2 years or so all my previous symptoms - and some extra ones have reared there head- yet my bloods always come back as fine. I am like a walking advert for symptoms of hypothyroidism! foggy brain, lack of concentration, depression, lack of libido, irregular and crazy periods and i hurt all over, my joints, arms legs back, and i cant lose weight (although my weight isn't too bad), post nasal drip, and so so so tired no matter how much or little sleep i get- and i sleep well but the list goes on! I have read some instances of people still suffering even though they are taking levothyroxin but does anyone have any info, ideas ....anything im just feeling so helpless and dr's just seem to suggest counselling for the depression and suggest i eat less to lose weight! Help!

Written by
e186 profile image
e186
To view profiles and participate in discussions please or .
Read more about...
15 Replies
ITYFIALMCTT profile image
ITYFIALMCTT

That sounds miserable. Do you have the results of your most recent blood tests (with their reference ranges) so that people can take a look at them, please?

Please include the results of any vitamin and mineral tests (iron, vitamin B12, vitamin D etc.) and mention any dosages of thyroid hormones, other medications or supplements that you are taking.

e186 profile image
e186 in reply to ITYFIALMCTT

Its really interesting coming on here- everyone seems to have an endo and know their results but i just have a gp who says...yep there in range or alters dose as he deems fit. Im almost positive it is only the T4 they check when they do my annual check though.The only endo involvement was when the gp spoke to him directly when i was first diagnosed. I am having a test on friday and i think that the doctor has asked for a few more bloods to be taken as i have thrown a bit of a wobbily there this morning that i cannot go on feeling like this- it physically hurts to wake up and move and i am always so unmotivated and tired. so i will ask for these when i get the results. Thank you.

ITYFIALMCTT profile image
ITYFIALMCTT in reply to e186

:)

1 Knowing your results and that 'normal is an opinion not a fact' can be a key self-help strategy;

2 I'd be impressed if they do regularly check your T4, most people are just have TSH tested and the lab. will only perform a T4 if that is out of the expected range.

Ideally, you'd have the range of tests detailed by SeasideSusie and that would present a comprehensive picture of how you are and whether you need to tweak your vitamin and mineral levels to improve the way that your body can use its supplemented hormones (e.g., levo.).

I hope that there's a clear outcome from the tests so that you can start to improve the way that you feel. Good Luck.

e186 profile image
e186 in reply to ITYFIALMCTT

maybe it is TSH- to be honest i have no idea, no one has ever discussed it with me and no one has ever mentioned minerals or vitamins just take your medication once a day and have annual blood test. Thanks so much

SeasideSusie profile image
SeasideSusieRemembering

e186 If you post your latest test results, with reference ranges, and say how much Levo you are on, members can comment. Ideally we need to see:

TSH

FT4

FT3

Antibodies don't really matter as you are confirmed Hashi's, however as Hashi's and low nutrient levels go hand in hand you also need:

Vit D

B12

Folate

Ferritin

If you have had vitamins and minerals tested, please post the results with reference ranges and say if you are supplementing anything and how much.

And, as you have Hashi's, are you strictly gluten free? Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Also, supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

In case you haven't looked into it, some information about Hlashi's:

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

e186 profile image
e186 in reply to SeasideSusie

thank you- this is really helpful- Im almost sure they only do T4 as i mentioned T3 today and that was a definite no to standard testing and i would have to order this privately but that she would look in to this and let me know.

there seems to be a feeling whenever i go and query if something is related to thyroid that it cant be as t4 levels are fine therefore im ok and weight loss is difficult because im getting older and it gets harder to shift so need to eat less (im 33) and that i feel tired/ foggy /distracted/want to be left alone because im a mum and lifes busy!

Treepie profile image
Treepie in reply to e186

You have the right to have your results .Always get them.

Scazzoh profile image
Scazzoh

Make sure when you have your blood test on Friday that it is early in the morning on an empty stomach. When you get your results post them here with the ranges and you will get some good advice. You can take control over your own health.

SlowDragon profile image
SlowDragonAdministrator

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after.

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. If they are too low they stop Thyroid hormones working. Have these been tested, if not ask that they are.

Always get actual results and ranges on all blood tests

Aim of Levo replacement is to bring TSH down to low in range, at least down to 1, some especially with Hashimoto's need it even lower to feel well. Essential to test both FT4 and FT3.

Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/why-changi...

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

Medics often have little understanding of this complex disease. It is as much a disease of the gut as the thyroid

marigold22 profile image
marigold22

You need to have a copy of every blood test you have done from now on. You are legally entitled to have that. I take mine home and study it, then post the results on here for comments and help. If the surgery receptionists refuse to give you copy, ask to speak to the Practice Manager.

e186 profile image
e186

So been thinking about everything that has been said on here and I'm amazed how little I have been told about hashimotos before now! Especially about fasting etc before testing etc. I have looked on the dr online system and found last years results but this is all there is:

Serum TSH level 0.62 miu/L [0.35 - 4.5]

SlowDragon profile image
SlowDragonAdministrator

If you can't get full thyroid and vitamin testing from GP

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 money off offers. DIY finger prick test or option to pay extra for private blood draw or

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after.

Post nasal drip can be allergy to dairy, 2nd most common intolerance with Hashimoto's

thyroidpharmacist.com/artic...

e186 profile image
e186

Ok so emailed the dr last week asking that this is taken seriously and that I should not feel like this I sent them what I wanted testing on ( the list from seaside susie)but when I got to the dr on Friday they were only testing their requests but would look in to my request. I have said it might not be my thyroid but surely it's worth looking at first and if not then what is it?!

Anyhow still not heard from them but got my results which they've said are normal and no further action required. So whilst it's not all the information you guys asked for it's all I have at the moment!! It was for a tsh kidney function and full blood count .

Thanks for your help!

e186 profile image
e186 in reply to e186

Took photos and struggling to attach! Sorry!

e186 profile image
e186

So due to issues posting pics I have had to do new posts- 'Translation required ' and ' translation required part2'!

You may also like...

Don't know where to turn next

me I have ME, MS Fibromyalgia. I think Hashimoto's is more than enough for me to cope with. I have...

Don't no where to turn

lucky person now five years later I am at my wits end with mood swings depression hair loss fatigue...

Levothyroxine - don't know which way to turn next?

better and at times seemed a bit worse. When I increased to 175mcg all initially seemed ok, not...

Don’t know where to turn next

fatigue & insomnia & high Bp. I still have all of these symptoms but have gained a couple of...

Newbie with some results that I don't know where to start with!

had some test results back from medicheck after feeling awful for ages...all the usual symptoms of...