Any HELP ADVICE WANTED: Have had underactive... - Thyroid UK

Thyroid UK

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Any HELP ADVICE WANTED

14 Replies

Have had underactive thyroid for over ten year on 150 mg of Levothyroxine per day had blood test says my thyroid all good been tested for b12 it was 428 but floates was low so on folic acid tabs everyday to basically I still feel like I’m dieing every couple of days I’m that weak I can’t hold a cup of tea aching all over wake up tired but worst of all My memory has gone very bad I forget loads of things even putting handbrake on car which has cost me I don’t know if my symptoms are just thyroid but is anyone in same boat or advice an yes I’m over weight and desperately need to loose it too gone up to 20 stone an sick of yo-yo dieting

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14 Replies
greygoose profile image
greygoose

Well, for a start, you should stop dieting. That's not going to help.

Secondly, you should get copies of your blood test results, see what your doctor is testing and what the results are. All sorts of possibilities for mis-treatment, there. If you post them on here, with the ranges, then we will be better able to help you. :)

in reply to greygoose

Thankyou very much I will ring doctors Monday morning and ask as they are now thinking my symptoms are just down to folic acid deficiency and I know it’s my thyroid also I asked to be referred to a specialist but they won’t ashy thyroid is normal with meds

greygoose profile image
greygoose in reply to

Oh, you don't want a so-called 'specialist', because most endos are just specialist in diabetes and know nothing about thyroid. They tend to really mess people up. Real thyroid experts are very difficult to find. So, unless you know of someone in particular, I'd stay away from endos, if I were you.

Just one point, nobody is deficient in folic acid. They are deficient in folate. Folic acid is synthetic folate, and not as good as methylfolate, which is real. I'd buy my own methylfolate, if I were you. :)

in reply to greygoose

Thankyou has anyone found any other way of managing thyroid and yes I know it’s folate deficiency where can I purchase methylfolate

greygoose profile image
greygoose in reply to

On Amazon.

An awful lot of us on here manage it ourselves. We couldn't make a worse mess of it than the doctors!

in reply to greygoose

I’m just finding it very difficult to find out what is actually causing my symptoms if I could know it’s thyroid or anemia or something else than I can try get to managing it the best way but doctors just seem to push me out the door

greygoose profile image
greygoose in reply to

Of course they do, because they don't know.

But we might be able to see where the problem lies if you get copies of your blood test results. :)

in reply to greygoose

Thankyou you are giving me some kind of hope at least

greygoose profile image
greygoose in reply to

That's good. :)

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus very important to test vitamin D, folate, ferritin and B12. These are often too low and then thyroid hormones can not be used correctly

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

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.

All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

I would agree with greygoose about folate rather than folic acid. Be better to take a good quality daily vitamin B complex with folate in. Eg Igennus Super B or Jarrow B-right

chriskresser.com/folate-vs-...

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...

Come back with your results and ranges once you have them

do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may "need enhanced" access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, (EU rules changed after May 25th 2018)

in reply to SlowDragon

Thankyou very much for all your advice I had bloods done in Feb which she looked and told me was normal range but was very ignorant and pushed me off when I asked her what they where she just kept saying their fine their not the problem as my symptoms have got very bad with memory loss weakness fatigue ect so I went to gp told them she suggested I’m b12 deficiency and siad a few b12 jabs would sort me right out so she tested for a few things which was flolate ,b12,Vitamin D,kidney function and some others but wouldn’t tell me much at all after forcing out of her she siad my b12 was 428 and my folates was 2.1 and take folic acid eat greens I will be fine I’m still convinced I’m b12 deficiency as I have all symptoms and also that my thyroid is playing a part to otherwise what else can I put this terrible memory forgetting things I been told a hour ago even forgetting to pull the handbrake of car an crashing into parked cars twice I have to get to the botttom of all this

SlowDragon profile image
SlowDragonAdministrator in reply to

Extremely common to have low vitamin levels as result of inadequately treated Thyroid

When hypothyroid we tend to have low stomach acid. Also low stomach acid more common as we get older. Low vitamins are direct result. (High acid needed to absorb nutrients)

Many people need to supplement daily good vitamin B complex. But see what tests you have had first

They can not refuse your request for copies of blood tests, they are legally yours.

I will cheak all tests I have had but have you list of tests I should have altogether to get a clear picture because whatever doctor hasn’t done I’m going to do private is 428 for b12 low as doctor told me that it’s fine but I have been told other countries say above 500

bfleur profile image
bfleur in reply to

Might be worth looking at Myalgic Encephalomyelitis, you have some of the symptoms.

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