Underactive for 2 years now: Hi, I'm new to this... - Thyroid UK

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Underactive for 2 years now

Rosehall profile image

Hi, I'm new to this site tonight. I've been diagnosed with underactive thyroid for 2 years now but have no idea what my levels are as my GP doesn't tell me. I'm on a low dose of 25mg levothyroxin daily and that hasn't changed since I was diagnosed. As well as the tiredness, lack of concentration and other symptoms, I am now suffering from cracked heels and skin splitting on my fingers. Has anyone else suffered from this? Now vitamin B12 is slightly down and I've to have an injection for this.

10 Replies

If you need an injection for low B12 it isn't slightly down!! You are entitled to have a copy of your lab results. Ask the practice manager if reception won't oblige. No doubt you TSH is still too high and your vitamin levels way too low. You need tests for Vit B12, folate, ferritin, Vit D, and Iron also TSH, T4 and T3. If GP won't oblige you can get a finger prick blood test via Blue Horizon, they are giving 20% discount over the easter holidays. Type in the search box top right on this site for more details. Good luck

Rosehall profile image
Rosehall in reply to crimple

Thank you Crimple, I'm finding all the information I've received back so far extremely helpful!

SeasideSusie profile image

Rosehall To still be on 25mcg Levo two years after diagnosis is ridiculous. That is just a starter dose for children, elderly people and those with a heart problem.

What should happen after starting Levo is that thyroid tests should be repeated 6-8 weeks later, an increase of 25mcg, another retest follows after 6-8 weeks, another increase of 25mcg, etc, until symptoms abate.

What you need to do is ask your surgery for a print out of your results. Your GP won't tell you, you have to ask. And don't just get the results verbally, get a print out so there are no mistakes or misunderstanding. You are legally entitled to them under the Data Protection Act 1998 so if they are reluctant to give them to you just mention that it is your legal right to have them and that you will call back the next day to give them time to organise and print them. Make sure that the reference ranges are included.

If you haven't had a test in the last year then you are due for one so book it and also ask for Vit D, ferritin and folate if these weren't done when your B12 was tested. Also ask for thyroid antibodies to be tested.

Post all your results with ranges for members to comment.

Your B12 is more than slightly down if you are having injections, that means you are B12 deficient (it will be under range). Folate is usually done at the same time and if that is also low then you should be given folic acid. Whilst supplementing with B12 you should balance all the B vitamins by supplementing with a B Complex as well.

*Important​* - When having thyroid tests always book the very first appointment of the morning, fast overnight (you can have water) and leave off Levo for 24 hours (take after the blood draw). This gives the highest possible TSH which is what is needed when looking for an increase in Levo or to avoid a reduction. Do this every time as continuity of conditions means that you can accurately compare your results every time.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges.

Read and learn about your condition so that you can discuss your treatment with your GP confidently, otherwise you will be left undermedicated and will remain unwell. Check out ThyroidUK's main website, thyroiduk.org.uk/tuk/about_... and work your way down the menu on the left hand side.

Thank you Seaside Susie, your reply was very helpful. I will ask for printed results from the GP. I really have no idea what all the numbers will mean but will make it my business to get to know. I've just left it to my GP assuming that he has been prescribing the correct dose etc., it's the cracked heels and fingers which has heightened my quest for for further information . I've also taken on board the useful info regarding the timing of going for blood tests. I've recently had them done and was advised no new action needed and remain on same dose! It was my practice nurse who advised me my vitamin B12 was low and she added a note to my file which went back to the GP resulting in the prescribing the injection. I haven't had that yet as it's been the holiday weekend. Shall I notice a big difference once I've had it ?

MariLiz profile image
MariLiz in reply to Rosehall

You will probably need six injections for your low B12, given over a two week period. These are known as "loading" doses, to boost your level of B12. I doubt that just one injection will do much to improve things. Are you vegetarian or vegan, or do you have digestive problems that might make absorption of vitamins difficult?

It would be good to know your actual blood test result, and that your GP will be investigating further why your B12 was low?

It often seems to accompany thyroid problems. It sounds as though you should have had an increase of thyroxine for that too.

Wishing you well. MariLiz

SeasideSusie profile image
SeasideSusieAdministrator in reply to Rosehall

Rosehall As MariLiz says, you should have 6 injections over two weeks and then 1 injection every three months for life, that is what usually happens.

Read these links before you start injections and push for any further testing mentioned - remember that your GP will do as little as possible for two reasons

1) He doesn't know enough

2) He doesn't want to spend the surgery's money

From NICE - Clinical Knowledge Summary of treating B12 deficiency cks.nice.org.uk/anaemia-b12...

From NHS website - nhs.uk/Conditions/Anaemia-v...

And go through the menu on this website b12deficiency.info/signs-an...

Some people go 'downhill' at a certain point between the 3 monthly injections and find they need to supplement with sublingual methylcobalamin lozenges until the next injection. There are 5000mcg and 1000mcg doses available. Some people buy their own B12 injections and self inject in between NHS ones. You can get more information and advice from the Pernicious Anaemia Society forum here on Health Unlocked healthunlocked.com/pasoc

Don't forget the B Complex - Thorne Basic B is often recommended, I use Metabolics at the moment and am happy with that.

My cousin has just finished her course of 6 loading injections, her level was 73. After the 6th one she didn't really feel much better so it may not be a quick fix for you.

I've just been diagnosed with underactive thyroid and my results were really bad. I've had terrible skin on my hands and feet and head for the past year. Sometimes i have to remove my wedding ring. I always knew it was something to do with hormones as it always flared up at certain times of my cycle. I've tried so many creams but the only one which really helps is cetraben. It's worked amazing compared to anything else and i use it every night. You can buy it usually behind the counter at pharmacies but the dr might prescribe it xx

Rosehall profile image
Rosehall in reply to natwatson84

Thank you natwatson84. I too use cetraben and it is very good but I don't think it's taking away the cracked heels and splitting finger skin. I have booked myself a chiropody appointment and hoping that will help the feet. It's very distressing when these symptoms are visible, I sympathise with you. Have a read at Seaside Susie's reply to me too, it was very interesting. Good luck to you x

Marz profile image
Marz in reply to Rosehall

Having cracked heels was something I had before diagnosis in 2005. All gone now ! So yes definitely a Hypo symptom. A good Podiatrist should help too - so have a treat and enjoy. You can also educate the person at the same time - as they should be able to direct people with cracked heels towards thyroid testing :-) Mine here in Crete is very aware !

It will be interesting to see your results. Post in a new post so more people will see them .... Hope you soon feel stronger.

shaws profile image

Your dose seems to be very low considering you were diagnosed two years ago.

Ask GP for a new blood tests as you are symptomatic and say you've had advice from the NHS Choices on information for hypothyroidism.

The test should be the very earliest possible, fasting and allow a gap of 24 hours between your last dose and the test and take afterwards.

Ask for TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate.

If GP or lab wont do all of them you can get tests through a recommended lab and they are home pin-prick tests usually.

Always get a print-out of your results with the ranges and post for comments.

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