Can anyone help me please?: I'm looking for... - Thyroid UK

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Can anyone help me please?

Bunny12345678 profile image
25 Replies

I'm looking for advice as I'm getting desperate, I've been unwell for 8 months now, at Christmas I kept feeling ghastly and faint, palpitations and shortness of breath, I now have aches in my neck, above right breast and posterior right rib ache. My legs feel like jelly and head foggy plus tinnitus, bowels also not normal. Gps have given up on me so having to try and find any other way to get help. Vit d 27 in April and a Cardiologist said I have inappropriate sinus tachycardia, this has settled though. I've had some private venous bloods just come back. I'd really really appreciate any advice please

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SlowDragon profile image
SlowDragonAdministrator

Previous post here

healthunlocked.com/thyroidu...

Shows very low serum B12 and folate

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

Have you had ultrasound scan of thyroid yet?

Magnesium was low. Are you currently taking any magnesium supplement?

Vitamin D may be better around 80nmol-100nmol

greygoose profile image
greygoose in reply to SlowDragon

It's an active B12 test.

SlowDragon profile image
SlowDragonAdministrator in reply to greygoose

Previous post shows Serum B12 very low - tested via Blue Horizon

healthunlocked.com/thyroidu...

greygoose profile image
greygoose in reply to SlowDragon

But the latest, active test is fine.

SlowDragon profile image
SlowDragonAdministrator in reply to greygoose

Which is very odd ...because low serum B12 result was only 13 days ago

Unless you have been supplementing B12 since Blue Horizon test Bunny12345678 ?

Might be worth doing MMA and homocysteine test

nutris.viapath.co.uk/pages/...

Bunny12345678 profile image
Bunny12345678 in reply to SlowDragon

The previous test was a capillary sample, no I've not been supplementing as wanted accurate result for test.

Bunny12345678 profile image
Bunny12345678 in reply to SlowDragon

Thank you very much, I'll look up the vitamins you suggest. I asked repeatedly for an uss of my neck, gp refused but eventually gave in ,but requested ct! Radiographer phoned today and has asked gp to request uss and mri.

I've just bought floradix magnesium to try.

Bunny12345678 profile image
Bunny12345678 in reply to SlowDragon

Thank you for your advice and suggestions, I've replied below by mistake to you.

Bunny12345678 profile image
Bunny12345678

I've also started with Raynauds and really cold feet

What time was your cortisol test done as that impacts on the results as they change through the day. The best time to do one is between 8-9am

Bunny12345678 profile image
Bunny12345678 in reply to

It was done at 9am for this reason, I tried to ensure it was accurate as possible in the hope something simple flagged up

in reply to Bunny12345678

Okay so it is on the low side of normal & could account for some of your symptoms. Ideally your GP should refer you on to an Endo who understands pituitary/adrenal issues as many of them don't., to do some more testing to see what's going on. If you're happy to tell me which part of the country you are in by private message, I can help recommend an Endo who understands these issues.

Bunny12345678 profile image
Bunny12345678 in reply to

Thank you So much. I'm in North East Lincolnshire

Bunny12345678 profile image
Bunny12345678

I'm now booked in for more blood tests tomorrow, I could only get an afternoon appointment unfortunately. I'm doing PTH, full blood panel, biochem tests, and tsh, ft4, ft3.

Sophie2009 profile image
Sophie2009 in reply to Bunny12345678

Sorry to interupt your post but it's always advised on here to get the earliest appointment. Ideally before 9am. Without eating or drinking anything other than water 😊

Bunny12345678 profile image
Bunny12345678 in reply to Sophie2009

I know, but private clinics are busy, extra pressure especially atm

Sophie2009 profile image
Sophie2009 in reply to Bunny12345678

OK. I understand that. It's just you might not get accurate thyroid results with an afternoon test.

Bunny12345678 profile image
Bunny12345678

I know, I'm a bit stuck really, I'm just desperate to get sorted now

Sophie2009 profile image
Sophie2009 in reply to Bunny12345678

I know and sorry to hear that. Won't your own gp run the same tests at an earlier time if possible?

Bunny12345678 profile image
Bunny12345678 in reply to Sophie2009

No, they keep saying my tsh was normal (I got the phlebotomoist to add t3/t4) and other bloods were normal, I've requested copies of all my results in May, I'm still waiting. I keep telling them how ill I feel, but I'm being told to await my repeat ct chest (first one showed nodules) this isn't really the problem. Then I get told I'm anxious!

Sophie2009 profile image
Sophie2009 in reply to Bunny12345678

Aw so sorry about that. I am the same. Got repeatedly told i'm anxious too. When I know that's not the case. I still haven't got diagnosed with anything either so i really sympathise with you 🤗

penny profile image
penny

‘Normal’ isn’t necessarily.

Hi Bunny there are research papers and blog information from people who have experienced vitamin d deficiency who ae medically trained in the UK who say the recommended NHS guide lines for vitamin d levels are too low. They say it should be over 100 to 150 for optimal levels. Iron and vitamin D are closely linked with iron and ferritin levels along with key vitamins C which if are not high enough won't get enough oxygen into your blood. This may lead to Raynaud's syndrome. As you have palpitations and breathlessness, this can be in turn be linked with thyroid disease. Hyperthyroid disease can give rise to these symptoms with heart palpitations, and acute anxiety. This can be misread as anxiety and depression in mental health assessments. I have my notes to prove it! It is the type of thyroid disease you have which might make all the difference to these symptoms. Hashimotos can give rise to these symptoms but with this you may have food intolerances such as gluten and your thyroglobulin levels and antigen levels are higher. Unless you have these thyroid tests done you wont be able to find out if you need to change your diet and lifestyle.

There are interesting articles by US pharmacists Isabella Wentz and Suzy Cohen who

show how food intolerances can upset your thyroid gut and bowel and are linked to coeliac disease. suzycohen.com

If your iron and ferritin levels are low, this may be attributed to your thyroid and also associated celiac disease. If you want private food intolerances going through Alphega branch of chemists this may help the puzzle. Hope I have not repeated others information.

Bunny12345678 profile image
Bunny12345678 in reply to

Thankyou very much for taking the time to reply, I had some more blood tests yesterday, I'm currently awaiting the results, I tested tsh, ft3, ft4, crp, fbc, u&e, lft and mg, so I'm hoping that something shows. I'll post the results on here as soon as I have them. Today and yesterday I just keep feeling wiped out about this time of day onwards and this ache in the right side of my back is worrying.

in reply to Bunny12345678

It can be a sign of urinary kidney infection. If you can take a sample to the clinic it might help cross off things on the list . You can always make an appointment with a nurse for the urine test. If you have lifted anything heavy, or fallen, put a strain on your muscles it might help to track what is going wrong. There is information about taking your thyroid meds at least an hour before morning coffee or tea and at least the same after. Coffee and tea with caffeine may affect the absorption of thyroid medication. If you are weak at a certain time of day, then this could be to do with the active t3 . Coffee and tea can actually affect active t3. Samples maynot be done within hours and the results might not be accurate.(NHS) Pleased you have had recent tests and the administrators will be able to comment. Another cause of weakness and muscle pain might be angina. Have known heart that drugs such as beta blockers can be given to stop the palpitations. There is a really soothing video called "Heather's massage for lymphatic drainage for head and neck. Heather is a remedial therapist and she is so calming you can copy the movements feeling relaxed. If the pain is due to IBS then this can be treated by medication. Find another GP who can help you but don't' overlook symptoms which might need medication. Take care. No need to reply.

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