Sick and tired of being sick and tired - Thyroid UK

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Sick and tired of being sick and tired

Tiredmum75
Tiredmum75

Hi everyone I'm on thyroid medication for Graves I'm not sure why but I've been feeling lightheaded dizzy shaky and nausea for the past fortnight does anyone have any idea what it could be cause I'm sick of it

19 Replies
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shaws
shawsAdministrator

Tiredmum75 I cannot help as I am hypo. Others who have experience of Graves will respond when they read your post.

Tiredmum75
Tiredmum75 in reply to shaws

Thankyou shaws

SlowDragon
SlowDragonAdministrator

Get some blood tests done, as well as TSH FT4 and importantly FT3, plus antibodies also get vitamin D, folate, ferritin and B12 checked

If GP unhelpful then private testing is available

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular

All thyroid tests should be done as early as possible in morning and fasting.

Thanks slow dragon I wi ill just write what you listed so I don't forget

Hi Tiredmum75

So sorry you are obviously having a bad time. I was diagnosed with Graves in 2015. Has anything in particular changed recently? - as your post says 'in the last couple of weeks. Can you tell me if you have lowered or increased meds or changed meds etc. Also when did you last have a blood test or any treatment. And when did you last have your vit levels tested with a blood test? B12, folate, D3 etc any info on your history might help to pinpoint what might be going on. Thanks. All the best.

Tiredmum75
Tiredmum75 in reply to Millea

Hi still on 100mcg of thyroid medication don't know about the vitamin blood tests as doctor refused to them hopefully have better luck with endocronligist next month. I had my sugar tested recently and it has fallen from 6 to 4.1

Millea
Millea in reply to Tiredmum75

Hi again.

What thyroid meds are you on? When were you diagnosed with Graves? And do you suffer from anything else such as thyroid eye disease or diabetes (I only ask about diabetes as you mentioned blood sugars) Sorry about all the questions. Everyone is different (cos we're all unique 😊) . When was your last blood test and do you have the lab results printout? If you do, you can post your results on the forum. Results need to include the numbers in brackets - as these are the ranges for your specific testing lab and they vary from lab to lab. When on thyroid meds you should be getting regular blood tests. So if you haven't had one since you've noticed this change in your symptoms - you should call your endo dept and ask them to arrange one for you to test your T3, FT3, T4, TSH and FT4 plus your vitamin levels etc.

I am on carbimozole for my Graves and used to also take propranolol for heart palpitations which would lead to dizziness. I have been on these meds for two and a half years and won't bore you with all the ups and downs in my T3 levels. There are many things that may be causing your dizziness and exhaustion but a good place to start would be an up to date blood test and to check into those vit levels. Low B12 can cause a huge amount of issues and it's something that doctors/endos are ridiculously useless as checking.

If you can give me an idea of your brief history e.g. Have you had any or all your thyroid removed? Have you had iodine treatment. Do you suffer from thyroid eye disease etc that would be really helpful.

Thanks

Hi sorry I forgot I did have my b12 tested a couple of months back and it was extremely high 532

Marz
Marz in reply to Tiredmum75

That is not extremely high - just a good result. Were you supplementing at the time of the test ?

Tiredmum75
Tiredmum75 in reply to Marz

Yes it scared me cause it always has been low thanks for clearing that up for me

Marz
Marz in reply to Tiredmum75

Were you supplementing at the time of the test ? You cannot overdose on B12 - excess is excreted ....

Millea
Millea in reply to Tiredmum75

Sorry didn't see you additional post until now.

Normal values for B12 are 200 to 900 picograms per milliliter (pg/mL). So at 532 you are nicely in the middle - which is good.

Tiredmum, you need to post all the results you have plus their lab ranges and let people on here see what they are before anyone can really advise. Also how long have you been being treated?

I was treated with block and replaced and I was SO tired at the beginning, well for the first three months. Fortunately my kids are grown up and don't live with us so I was able to sleep as much as I needed to. My poor husband did all the shopping and cooking when I was first diagnosed. It was only when levothyroxine was added in with the carbimazole that I started feeling human again. I started on a low dose of thyroxine - probably because if my age, I was 64 when I was diagnosed - and after a year I had worked up to 100mcg like you are taking. I kept taking 40mcg carbimazole all the time I was taking my thyroxine.

I found my doctors didn't want to test anything more than they had to do I used Blue Horizons, can definitely recommend their home fingerprick tests.

I still use them because I tried being gluten free to see if I could reduce my thyroid antibodies, well antibodies in general because I have several autoimmune conditions besides Graves - it worked, my thyroid antibodies have gone right down to almost single figures, anyway the Thyroid 11 tests antibodies, vitamins and T3 - I was never able to get T3 tested in all the time I was being treated.

When I started taking carbimazole my pharmacist told me to take vitamin C too so I took 1000mcg slow release vitamin C with zinc. I also used a vitamin D spray and I take sublingual vitamin B12 from time to time - I use Jarrows, it's got methylcobalamin and not cyanocobalomin, you don't want that. I try to eat really healthily, lots of oily fish, chicken, vegetables, nuts and fruit. I don't eat bread, biscuits or cakes and junk food or fizzy drinks so I get my carbs from vegetables and other food I eat, my diet is probably low in sugar as well as low in carbs which I find makes me feel better

I don't think your B12 is all that high really but it depends on the lab range, you want it to be near the top of the lab range.

I think depending on how old your kids are, your name probably says it all, it's one thing being tired like I was and I was very tired, but I would imagine it's another thing altogether being tired and having kids at home needing looking after. It took me all my time to look after myself never mind anyone else, again though it possibly depends on your age as well.

Hi I have been on thyroid medication since February I don't eat gluten as I also have coeliacs. I try to eat a lot of salads stir frys and omelettes also stews and meat and vegetables. I have been through five doctors in the last 12 months as they keep leaving so getting blood results is difficult which is one of the reasons for seeing the endocrinologist next month as I need to keep track of this. I have three kids on the autism spectrum which is extremely stressful as the 14 year old also has schizophrenia. Sorry about the long reply and thankyou

My latest results I could get were

Thyroid stimulating hormone 2.4 (0.40 -4.00)

Free thyroxine ft4 18 (10-20)

Serum chemistry glucose 4.1 (3.0-6.0)

Hopefully someone good at interpreting results will come along and comment. I know I always felt better when my TSH was 1 or below, I wouldn't have felt good at 2.4.

You have such a lot of stress in your life imnot surprised you are feeling tired, anyone would feel exhausted coping with all that.

You definitely do need to see an endo. Once I had been diagnosed by my GP all of my appointments from then on were with an endo. My hospital is a big teaching hospital so inthe Year I was being treated I never saw the same one more than once but I figured that my actual consultant knew about my case.

I know it's asking a lot but if you could manage it on top of everything else it would help keep if you could keep a note of what levels of carbimazole and thyroxine you are taking and what your bloods are at the same time and hopefully you will be able to see a pattern where your body feels good. I did that and it was a huge help when I knew I was needing an increase in my thyroxine, but then I only had me to bother about, not three kids with various problems. Make sure your endo knows how exhausted you are and why. 😊

Thankyou I will 😁

SlowDragon
SlowDragonAdministrator

That B12 is not high. When on Levo we need it right at top.

Endocrinologists are rarely interested in vitamin levels.

I hope that's not the case ugh

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