HELP AND ADVICE ON NEW SYMPTOMS NEEDED! - Thyroid UK

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HELP AND ADVICE ON NEW SYMPTOMS NEEDED!

crazykoala profile image
11 Replies

I have hashimotos and have been very symptomatic for many years but over the last year things have been getting worse and many new symptoms have arisen. I have started getting pins and needles in my hands and feet along with red fingers( no white or blue) and a swelling feeling. It's feels as if the blood is getting drawn and trapped there. I get tight band feelings in arms and legs especially in legs and slight bending movements will give me dead legs in an instant. I have trouble getting upstairs, walking and moving up any gradient. It feels as if all movement is cut off from my hips ( complete stiffness) and I get a let down pain that lasts several minutes after climbing stairs. I have also been getting headaches/ swelling feeling in head and odd as it sounds in my chest with palpitations at simple activity. If I bend down I get palpitations and a cut off of blood supply feeling in my upper body/ head, floaters in my eyes etc..

I have previous diagnosis of prinzmetals angina. (Diagnosed from an abnormal stress test and an angiogram) but the cardiologist didn't say much and said he wasn't sure what was causing it and basically discharged me. This was 6 years ago. Since then I have had raised anti-cardiolipin antibodies ( does anyone else have this?) I have been put on a daily asprin which seems to have made things worse. Along side all this when the symptoms are active I get a terrible anxiety that comes from nowhere, I have no control over it and it can last days!

I'm starting to worry that it is yet another autoimmune disease of some sort, vasculitis or something. I went to the doctors last week and they don't really take me seriously. They reluctantly sent me back to a cardiologist who just did a 24 hour ecg that was fine and said I was fine!

I'm wondering if anyone else has had a similar experience or can give me some advice. I've also wondered if this could be an allergy to chemicals? I have some allergy to foods which I have avoided. Finding this very debilitating/ worrying and feel like I'm getting nowhere! Thanks so much for reading. Very grateful for any help!

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crazykoala
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11 Replies

Do you have any recent blood test results for thyroid that you could post up? Also FBC, B12, folate, ferritin, vit D etc.

From a symptom point of view you need to investigate pernicious anaemia (B12 deficiency), since you are describing some of the classic neuro symptoms:

b12deficiency.info/signs-an...

Hennerton profile image
Hennerton

Are you on any medication and if so, when was your last thyroid blood test? If you have the results with reference ranges, post here for more advice. If you have not had a blood test, I think it is time to ask for one. These symptoms could be other issues but are just as likely to be low thyroid, which manifests itself in many strange ways. Hope you get help soon.

crazykoala profile image
crazykoala

Thank you! As far as I know most of my bloods have been ok. Recently they checked:

TSH 1.2 mU/L 0.35-3.50

FT4 13 pool/L 8-23

Parathyroid 3.0. pmol/L 1.6-6.9

Ferratin 16 ug/L 23-300 (Red blood cells ok.)

I currently take 100mg Levothyroxine daily. I don't have a recent B12 result but it has been apparently within normal limits previously. This is interesting though, I had no idea a deficiency could cause some of the symptoms I am having. I take iron supplement ( which I believe contains some B vits also) along with vitamin D and I recently started magnesium( all in liquid form) Thanks for your replies!

in reply tocrazykoala

Well your T4 isn't setting the world on fire, and your ferritin is terrible. I would post a new question asking for iron supplement recommendations, you need to get that up much higher, more like 80. No wonder you're light headed with palpitations. Were your vit D levels low as well - how much vit D are you supplementing? Re B12 and folate best to get copies of those previous results and post them, or get new tests done if not recent. Because your ferritin is so low this would mask any signs of B12/folate deficiency in the FBC. Also you can have a functional B12 deficiency and still test normal for serum B12, it isn't a good test. There's lots of info about testing etc. on the website I put in above. x

crazykoala profile image
crazykoala in reply to

My vitamin D was previously about 50. I'm supplementing 2500 IU daily, I was taking double this but my levels became too high. Thanks for all this info I will look into the B12 and agree about the Iron not being high enough, will get some advice on a better supplement x

shaws profile image
shawsAdministrator in reply tocrazykoala

If you supplement with B12 and Vit D, it should be methylcobalamin for B12 not cyanocobalamin and Vit D3 and not D2.

bunnybaby profile image
bunnybaby in reply toshaws

hi shaw been reading so much about b12 d3 not having much luck getting doc to test me ..can i start my own supplements? have seen some other posts about which makes you use have added them to my amazon basket..do i need any other vitamins to help with these two..just want to have less pain more energy etc, thanks :)

shaws profile image
shawsAdministrator in reply tobunnybaby

Before you supplement it would be preferable to have B12 and Vit D checked by your GP, so you know if you are deficient or not.

Make an appointment with your GP and ask for a full blood test as you are now aware that people with thyroid gland dysfunction, in general have a very low or deficiency in B12 or Vit D. You would also like him/her to check iron, ferritin and folate.

Tell her you don't want to supplement if it is unnecessary but you want to relieve your pains.

Vitamin E or any essential fatty acid is good for all our glands in general as is Vitamin C (I use the powdered Vit C and only take 1/4 teaspoon in water or juice.

tinyurl.com/o3z6xuh

thyroiduk.org.uk/tuk/treatm...

The final 3 in the above link are important in the converstion of levo and you can get these from food.

The most important thing is to make sure you are on enough levo to make you better not just to have it 'within range'.

bunnybaby profile image
bunnybaby in reply toshaws

big thanks shaw i have found out so much from you/this site my sister thinks i am obsessed..she also is on levo (so is mum) but is not a well woman and have told her to get all these checked to..(same docotor) heart diseases runs in the family to.. i will go back and try gain :( as just had levo upped to 100 so waiting for that to kick in and more blood tests in 6 weeks but not for b12 doctor still says no..but will go back with the info from above..thank you :)

shaws profile image
shawsAdministrator in reply tobunnybaby

We are obsessed - with the ability to get well and feel normal and get on with our lives. I hope to hear that you are feeling much better.

bunnybaby profile image
bunnybaby in reply toshaws

been a year :( still feel terrible so willing to try anything now..but thank you me to :) xx

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