Help! Mum said you are experts!: Me Hi there x I... - Thyroid UK

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Help! Mum said you are experts!

Stupidhands profile image
18 Replies

Me

Hi there x I have been suffering with lots of the symptoms of the silly thyroid! i asked for a blood test when my hand went funny for the third time alternately right left right and now left again... the doc just tried to give me depression tablets and I told him no- that’s too easy for you and my mum said it’s the thyroid... my results were TSH 1.7- (0.7-4.5) then the T4 was 14.2 (12.2-22.0) they said i’m Ok, I know I’m not!! I was then told I am vitamin Deficient with reading of 54, should be 75+...

I’ve put so much weight on, I don’t sleep well, I’m grumpy and emotional, my hands seize up starting at the wrist and then going to the first three fingers... they go away after a few days then swap over to the other hand... I can’t sleep with it, can’t wipe my myself, pull my tights on etc... not good! I’m thinking about going back to the docs in the morning... they reluctantly put me back in for another thyroid blood test in 8 weeks... I’m sad that they won’t listen and will just seem to want to give me depression tablets!

Can you offer me any advice?? Many thanks stupidhands :)

No medication

Only tested for TSH 1.7 (range 0.7-4.5)

T4 14.2 (range 12.2-22.0)

That’s all the info I hsve!

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Stupidhands
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18 Replies
SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

How much vitamin D are you now supplementing?

GP will probably only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs.

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Ask GP to test vitamin B12, folate and ferritin levels, plus thyroid antibodies

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH

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...

For thyroid including antibodies and vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Getting all four vitamins optimal and then retest FULL Thyroid testing privately including antibodies

Stupidhands profile image
Stupidhands in reply to SlowDragon

I think I’ll ask for these extra tests when I go tomorrow... my test was at about 11am and I hadn’t eaten anything by choice the first time, my test in 8 weeks is at 9:30am so I’ll do the same...

Thank you for your speedy response

Lesleyg13 profile image
Lesleyg13 in reply to Stupidhands

TSH is a lot higher mid cycle so if you are a menstruating woman do your best to have your blood test done at that time of the month.

shaws profile image
shawsAdministrator

Welcome to our forum and I shall give you some hints to get the best from a blood test for your thyroid hormones.

First: Make the earliest possible appointment, fasting (you can drink water) and if you were taking thyroid hormones you'd allow a gap of 24 hours between dose and test and take afterwards.

Ask GP to test TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Probably wont do T3 and the Frees but ask anyway. If he refuses you can get a home blood test and I'll give you a link. If you decide to do so, make sure you are well-hydrated a couple of days before so blood draw is easier.

I shall give you a link to private labs who will do postal tests.

thyroiduk.org.uk/tuk/testin...

Stupidhands profile image
Stupidhands in reply to shaws

Ah, I shall ask for these extras! Thank you!

SeasideSusie profile image
SeasideSusieRemembering

Stupidhands

I was then told I am vitamin Deficient with reading of 54, should be 75+...

It would seem that the unit of measurement for this result will be nmol/L.

You can make a start on addressing this whilst waiting for your next thyroid test.

The Vit D Council/Vit D Society/Grassroots Health all recommend a level of 100-150nmol/L. Unfortunately the Vit D Council website is not up and running at the moment which is a shame as there is a lot of very useful information to be found there. However, you can see from the following guide how much D3 you can take to improve your level:

betteryou.com/health-hub/wp...

Scroll down to 13 years and above then the Adequate category where you will see the recommendation is for 6,000iu D3 daily for 2 weeks followed by 3,000iu daily. The Vit D Council's website would have recommended 4,000iu daily, so you could follow either recommendation but you should retest in 3 months time to check your level.

When you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range.

SlowDragon has linked to an NHS lab which does a fingerprick blood spot test for £29, very easy to do and good service. You should check levels twice a year when supplementing with D3.

A good D3 supplement is an oil based softgel, eg Doctors Best, which gives good absorption and has just 2 ingredients - D3 and extra virgin olive oil, and no unnecessary excipients. There are also oil based liquids such as Vitabay Organic. Avoid tablets and capsules as their absorption is poor. There is also an oral spray such as BetterYou if you prefer that, it's absorbed through the mucous membranes in the oral cavity so bypasses the stomach but does contain quite a few excipients.

There are important cofactors needed when taking D3 as recommended by the Vit D Council.

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc. Vit K2-MK7 is available as softgels or oil based liquid (again Vitabay Organic is one) which again will be better than capsules or tablets.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.html

in reply to SeasideSusie

After having to take two private vitamin D tests over the last couple of years I finally managed to nag the surgery folk to order a Vit D test. At first (if I remember) it was 39, then went up to 66 after supplementing up to 8,000iu daily - not very consistently (with vitamin K etc.) Then I tried 4,000iu and am finally up to 98, almost within the Vitamin D Council's recommendation!

When I showed them the first private test result they prescribed only 800iu - almost useless! And I can't take it because it was with calcium which I don't need and may carry a greater risk of cardiovascular problems when taken together. So I nagged again and finally got some without calcium, still only 800iu a day.

I think I will keep at 4,000iu for a few months, then test again to make sure its still in range and reduce to 3,000 if it's getting too near 150.

jimh111 profile image
jimh111

Hypothyroidism can lead to a build up of deposits in the carpal tunnel which leads to trapped nerves to the fingers. This could be your problem as you have symptoms in both hands, a physical problem would affect just one hand.

Your TSH is low for your fT4. This can lead to lower fT3 levels and hypothyroidism. You need to measure TSH, fT3 and fT4 to find out. A low normal TSH with combined low normal fT3 AND fT4 would confirm this. See what your fT3 and fT4 are and whether your TSH remains low normal indicating a mild for of central hypothyroidism or subnormal TSH secretion.

Den1987UK profile image
Den1987UK in reply to jimh111

Hello jimh111 good afternoon . Yep unfortunately I am 32 and have Carpal Tunnel with hypothyroidism and it hurts like hell and dropping things electric shocks tingling and nerve pain. that and Raynauds again very hard to cope with have to avoid very cold tempratures otherwise my fingers go blue

jimh111 profile image
jimh111 in reply to Den1987UK

The carpel tunnel may or may not be due to hypothyroidism. It obviously makes sense to ensure you are on adequate thyroid hormone before opting for a capel tunnel release operation.

tavy profile image
tavy

Ask gp for another blood test and keep trying. 3 monthly at least. Your symptoms may be something else entirely. Full bloods require doing. Best of luck

Stupidhands profile image
Stupidhands in reply to tavy

Thank you I will ask, I can’t have my hands seizing up on me all the time, makes my everyday life very difficult!

Thanks for your time :)

Den1987UK profile image
Den1987UK in reply to Stupidhands

Hello Stupidhands good afternoon. It hurts like hell I know was diagnosed with hypothyroidism three years ago 29 years old now 32 years old. because I was under medicated for a while I developed Carpal Tunnel which is what you are describing. it is horrible and feel your pain electric shocks down the wrists and arms and hands and numbness tingling nerve pain and dropping things. I also have Raynauds another sign of hypothyroidism poor circulation and cannot go out in very cold weather otherwise my fingers go blue. I would check B12 levels definetely and Vitamin D3 and Ferritin K2 and Folate as other good people of the forum have said. Once you are on medication and vitamin levels optimised and an operation if needed for the carpal tunnel you should feel better.Your T4 levels are in range but I would go back and get a full TFT Thyroid function blood test done and FT4 FT3 and anitibodies TG and TPO checked also and if never done FBC Full Blood Count.

siddooo1 profile image
siddooo1

Hi

I had this issue, really painful and it resolved when I went gluten free. Perhaps, you could give it a go and see if there is any improvement.

Kind regards

Sidd0001

Myro profile image
Myro

Iodine lack and consequences. Inform yourself. It go many times along hypothyroidism.

Wetsuiter profile image
Wetsuiter in reply to Myro

i m not sure thats correct tbh

Den1987UK profile image
Den1987UK in reply to Wetsuiter

Actually being B12 Deficcient don't help your nerves with hypothyroidism.

As Jim says above, perhaps problem with hands is carpal tunnel syndrome. Get a referral to local hospital for a simple test. A simple operation will solve the problem 99%. I had it done a few years ago. Obviously leaves a scar at base of thumb where it joins the wrist, but that hardly matters.

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