Dizziness, lightheaded, extreme fatigue, extrem... - Thyroid UK

Thyroid UK

137,626 members161,396 posts

Dizziness, lightheaded, extreme fatigue, extreme thirst, muscle fatigue. Doctors don’t know what’s wrong with me. Help

sumansharma profile image
33 Replies

So for the past 3 months I’ve been having all of these symptoms:

•fatigue/excessive day time sleepiness. I’ll sleep for 9 to 10 hours and still wake up exhausted.

•extreme thirst. Constantly feel thirsty, will wake up in the middle of the night with chapped lips & dry mouth.

•constant fast heartbeat. It is usually normal when I am laying in bed, but as soon as I sit up or stand it will rise to 100 to 120 BPM fairly quickly. I also will wake up in the middle of the night due to my fast heart rate.

• constant dizziness/lightheadedness. If I stand for too long, I feel pressure in my head and ears and I feel very close to fainting. I’m barely able to stand up in the shower because I get so dizzy and it leaves me breathless.

•muscle aches/ trembling. Simple physical activities like holding a pencil or a heavy book will make me start trembling due to muscle fatigue. I usually don’t do anything except lay in bed, but my muscles still ache everywhere in my body.

•mental confusion. When people talk to me, it takes me a long time to focus on what they’re saying and process their words.

•nausea (I think this is because of the dizziness). I’m especially nauseous in the morning right after waking up. I gag when I try to eat food.

Because of my worsening symptoms, I’ve barely been able to leave my bed the past 3 months. I had to quit school and my job. I’ve been to so many different doctors and they have checked EVERYTHING and can’t find anything wrong. They checked my iron, TSH, vitamin D, vitamin b12, diabetes, and lots of other things. No anemia, no diabetes. Everything except vitamin D came back normal so I’m taking supplements for that. They also did an MRI which was normal, and did echocardiogram to check my heart. They found I have a minor mitral valve regurgitation, but it’s so minor it shouldn’t be causing problems. Nobody can figure out what’s wrong. Please help. Btw I’m a 20 yr old female, so doctors won’t take me seriously because I’m so young.

Written by
sumansharma profile image
sumansharma
To view profiles and participate in discussions please or .
Read more about...
33 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

If thyroid antibodies are high this is autoimmune thyroid disease also called Hashimoto's

Hashimoto's or Graves' disease can be the reason for mitral valve prolapse

verywellhealth.com/mitral-v...

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Have you had FULL Thyroid testing?

Can you add your most recent blood test results and ranges for TSH, FT3 and FT4 plus both TPO and TG thyroid antibodies, folate, B12 and ferritin

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

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

How low was vitamin D?

How much vitamin D are you being prescribed now?

sumansharma profile image
sumansharma in reply to SlowDragon

I don’t believe my doctor did a full thyroid test. He only tested my TSH recently and my T3 but that was a year ago. My results were:

TSH: 0.58 standard range: [.35 - 4.0]

T3 (1 yr ago) : 117 standard range: [80 - 210]

Vit B12: 777 Standard range: [200 - 910]

Ferritin: 30 Standard range: [13 - 126]

Vitamin D: 18 Standard Range: [30 - 100]

They prescribed me 4,000 IU daily of vitamin D3 and I’ve been taking that for 2 months. I went back and checked my levels again and it rose to 33. I’m still currently taking the supplements.

All of the other tests that you asked me for, I realize they were never tested. So I will look into that and see if I can go get them checked. Thank you so much for your help

in reply to sumansharma

Your ferritin levels are low and should be about 80 to feel well. The vitamin D level is too low as well being only 33 when the normal range is up to a 100. This deficiency needs to be assessed by your doctor as this can seriously affect your immune system and your metabolism. If your ferritin levels are too low this can cause gastrointestinal problems and if you have food intolerances which are affecting you, this can lower ferritin levels. If you have not had tests for celiac disease this might be helpful as wheat, gluten, dairy, egg might be affecting your levels. To increase your daily levels of sunshine d3 which converts from the liver to active vitamin d, sunshine, or daylight for about 15 minutes a day on your arms or small areas of the body are enough to keep your d3 producing in the body. Other problems to do with ferritin levels may be to do with gynaecology.

An article Serum Ferritin Levels in Celiac Disease can be found at

ncbi.nih.gov/pubmed/serum-f...

and ncbi.nih.gov/pubmed/7055099

glutenintoleranceschool.com...

Hope you pick up soon.

sumansharma profile image
sumansharma in reply to

I forgot to mention I am also a vegetarian, so I’ve had problems with iron deficiency and anemia in the past. I take iron supplements every now and then, although recently my hemoglobin levels were very normal, so I stopped taking the iron.

in reply to sumansharma

That's good you know about your anaemia but ferritin is the store of a protein which activates the iron. There are certain drivers, which aid metabolism including B6 zinc selenium and vitamin C. As a sufferer of diabetes I know all your symptoms show signs of diabetes type 2 but sometimes if you have an existing thyroid problem you can get type 1 diabetes. Have you had your diabetes glucose levels done fasting, first thing in the morning, to see if they are too high? A nurse can give you a finger prick test in seconds, and this may make all the difference to your diagnosis. You must not eat anything for at least 8 hours before the test, and can only drink water.

sumansharma profile image
sumansharma in reply to

They have checked my glucose level twice when I was showing these symptoms and it came back normal. However, it was not done fasting, I think they were both in the middle of the day.

sumansharma profile image
sumansharma in reply to SlowDragon

Also one other thing, it might just be nothing. I’m not sure. But my doctor had also ordered a full liver panel and the results were technically normal, but I noticed my bilirubin levels were ALMOST high, not quite. On 3 different dates, my results were:

Billirubin

06/27/2018: 0.7

03/02/2019: 0.8

04/06/2019: 1.0

Standard range: <=1.0

Now I know my results are technically normal, but I noticed that there was a pretty significant rise in my levels after just 1 month. Wanted to ask if you think anything of it? Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to sumansharma

Suggest you discuss with GP

High bilirubin can be Gilbert's syndrome. But your bilirubin doesn't look high enough for that

Judithdalston profile image
Judithdalston

Have they tested for sleep apnoea?

sumansharma profile image
sumansharma in reply to Judithdalston

Yes, they did a whole over night sleep test to check for apnea. The results came back normal

Judithdalston profile image
Judithdalston in reply to sumansharma

Good that they did it, and came back ok. My endo got me done instead of going down route of looking at obvious low T3, and suggested diabetic drugs.

DippyDame profile image
DippyDame

Hope you follow a SlowDragon's advice.

shaws profile image
shawsAdministrator

The very last thing a doctor thinks is wrong with a patient is hypothyroidism. So I'd follow SlowDragon 's advice and you will get a proper test which will confirm that you do have a problem.

The majority of doctors seem to be ignorant completely about anything to do with hypothyroidism and only look at a TSH result and rarely do they test the Free's i.e. Free T4 and Free T3.

I had so many diagnosis and even an operation on my throat which was unnecessary but not one whom I consulted even had an inkling that I was hypothyroid. I didn't even get my money refunded.

When I, finally, diagnosed myself the TSH was 100.

sumansharma profile image
sumansharma in reply to shaws

Yeah my TSH is currently at a .58 which is considered normal, although they never did any of the other tests. I will talk to my doctor and try to figure this all out!

shaws profile image
shawsAdministrator in reply to sumansharma

If you are in the UK, and can afford to pay for a Free T4 and Free T3 test, it might be worth getting. As stated above there are private labs that will do home pin-prick tests. Doctors only seem to test TSH and T4, neither of which relates to symptoms the person is having. Follow Slowdragon's advice for getting a proper blood test.

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

sumansharma profile image
sumansharma in reply to shaws

I’m actually from the US, so I’m hoping I can discuss all this with my regular doctor and see if he can test these for me.

shaws profile image
shawsAdministrator in reply to sumansharma

That's good that you can request your doctor to do these. Just for info:

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

Clinical symptoms can be quite draining of our energy. Thyroid hormones provide the energy to enable our whole body to work optimally.

SlowDragon profile image
SlowDragonAdministrator

JaneyJaney

A GP should test for thyroid antibodies. NHS currently refuses to test TG antibodies if TPO antibodies are negative. Many patients struggle to get just high TG antibodies diagnosed as Hashimoto's

High TG antibodies can be due to Hashimoto's or other things like Pernicious Anaemia of diabetes,

healthline.com/health/antit...

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 Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

engo profile image
engo

Hi - sorry to hear that you are having such a terrible time.

It would be good if you could follow SlowDragon's advice - you should also check out your calcium level. Do you know if you have had a blood test that includes calcium level - doctors will often ignore what they call a 'slight' increase. Level should be no more than 2.6.

High calcium is caused by hyperparathyroidism (overactive parathyroid glands) - nothing to do with the thyroid only that they are next to the thyroid - you have 4 of them.

You can read more at - parathyroid.com/about-parat...

Your symptoms sounds classic symptoms of hyperparathyroidism. I have had similar to your symptoms since August/September - I had 3 months of bad symptoms they eased then over last few weeks they are getting bad again.

When my heart rate is fast (at rest) its then that I feel really rough - I explain that to the doctors but they don't it. I have also had thirst, nausea and dizziness - the dizziness is an interesting one as I don't actually get dizzy but feel dizzy and lightheaded. I have also had palpitations. I had a couple of months off work but back at work now, but not easy.

Low vitamin D is often accompanied by high calcium. Doctor's often prescribe supplements, which enable you to absorb more calcium from your diet - you may have found your symptoms increased on taking supplements.

I have also had a Heart Echo and have minor mitral valve regurgitation. I don't think its anything to get excited about. However I have my own theory that this could affected by the high calcium. Have you had a 24 hour ECG?

My advice would be to find out what your actual blood calcium level (they usually look at the adjusted calcium reading) - if not already tested ask your doctor for a test. If your calcium is high then ask for a check of the level of parathyroid hormone (PTH) in your blood.

Sorry for going on a bit here - I hope you get some answers soon. I'm still waiting and fighting some battles with doctors. It's very rare in young people so may not be this - if it is once identified I think you will have less of a battle than most people because you are young.

Hope you get to the bottom of it soon.

SlowDragon profile image
SlowDragonAdministrator in reply to engo

Mitral valve prolapse is more common with Hashimoto's and Graves' disease

verywellhealth.com/mitral-v...

engo profile image
engo in reply to SlowDragon

The slight leak on the mitral valve should not be causing any symptoms at all - according to consultants I have seen. When I had my thyroid tests all tests were within range Thyroglobulin Antibodies, which is 204.0 IU/mL (Range 0-115). I'm waiting to discuss this result with my consultant.

SlowDragon profile image
SlowDragonAdministrator in reply to engo

So you have high TG antibodies, this can be due to Hashimoto's

healthline.com/health/antit...

For full thyroid testing you need TSH, FT3 and FT4

engo profile image
engo in reply to SlowDragon

Yes - all my other function tests were normal. I have other tests results due soon from Medichecks - adrenaline and noadrenaline when I have these I will see the endocrine consultant again. I don't have any Hashitomo's symptoms except heart palpitations/fast heart rate but this is possibly due to high calcium. If anything I have lost weight.

SlowDragon profile image
SlowDragonAdministrator in reply to engo

Common to loose weight with early stage Hashimoto's

sumansharma profile image
sumansharma in reply to engo

They did check my calcium, which was a 10.3. Standard range is [8.5 - 10.7]. Since it was in the normal range they didn’t say anything to me. I have had to wear a 7 day long heart monitor, however. But this was a long time ago before my racing heart symptoms started. Those results were normal, the cardiologist told me he noticed I had PVC’s (which I get a lot, that’s why I asked for the monitor). He told me that PVC’s are nothing to be concerned about but I’m not sure whether to believe him. My PVCs get pretty bad sometimes, to the point where I’ll have them 5 times in a row and i’ll feel them knock the breath out of me.

engo profile image
engo in reply to sumansharma

Have you just had your calcium checked once? Was it at a time when you felt at your worst? It looks like your in the US from the range you are using? Many labs in the US would have 10.5 as the top limit - but your test was still within.

I'm still being tested and have to go back to see the consultant soonish but as I said before your symptoms are very similar to mine but your's are more severe.

It would be worth having the thyroid tests soon. What reading was your vitamin D? Did you have a reading for phosphate at all?

sumansharma profile image
sumansharma in reply to engo

I’ve had my calcium checked 3 times in total.

6/27/2018: 10.3

3/2/2019: 10.3

3/9/2019: 10.4

I noticed it rose .1 in a week but I’m not sure if that means anything. And yes, I’m in the US so the ranges are a bit different here.

My vitamin D was at 18 (normal range: 30 - 100). They put me on supplements and after a month it rose up to 33. And no, they didn’t check my phosphate. I’m supposed to see an endocrinologist in 2 weeks so I’m hoping to ask them to check my other thyroid levels.

engo profile image
engo in reply to sumansharma

Hope you're appointment goes well.

Please could you let me know how you get on - as like I mentioned, your symptoms seem to match up with mine except your's sound more severe or at least at present. I had a really bad patch 4 months ago when I could not work due to feeling so ill.

sumansharma profile image
sumansharma in reply to engo

Of course! I’ll let you know in 2 weeks what the doctor says :) I hope you feel better as well

helvella profile image
helvellaAdministratorThyroid UK

Isn't it that you get thyroglobulin tested? (Rather than thyroglobulin antibodies.)

sued007 profile image
sued007

Sounds like me when it was eventually found i had a dangerous low ferritin level even though bloodcount was on low side of normal.i also had very heavy periods. I was suplemented with iron but this didnt help. Eventually infused with ferritin twice and now all fine a d symptoms reduced als had to have a loading of vit d which really helped the muscle and bone pain. Im on 175mg thyroxene following tt after goiter but these symptons were prior tt. Hope this helps. Have they tried any steroid meds to see if they help plus you could try relaxation tecniques as anxity can ironically cause or at least hinder some of these feelings. I wish you luck

mourneadventurer profile image
mourneadventurer

Perhaps worth trying ReMag, ReMyte (Botanicahealth). Magnesium is needed to balance Calcium, Vitamin D3/K2 and ReMag is picometer in size and can get into the cell. They don’t cause bowel intolerance like other magnesium supplements. Dr Carolyn Dean has loads of free online information.

A Full Moon Challenge (parasites) using Para 1, Para 2 and Biotoxin Binder (Amrita Nutrition) might help you to identify stealth pathogens. Dr Jay Davidson and Dr Todd Watts have extensive educational literature on this topic and protocols.

Goldengirl01 profile image
Goldengirl01

Sounds similar sleep apnoea.

You may also like...

Dizziness/lightheaded/ fatigue/excessive thirst

295nmol so referred me to Endo who said that was normal. he did repeat it but this was at 11:55am...

Constant fatigue, dizziness, thirst, nausea. Doctor says nothing is wrong.

years now I have been constantly dealing with fatigue, weakness, nausea, dizziness and a general...

Help with fatigue and trembling muscles

If I try to do anything except lie down I’m all wobbly and trembling muscles and extreme exhaustion...

What’s wrong with me?

And others I’ve had numerous thyroid function blood tests done by my GP all normal and so no...

Dizzy, nauseous, lightheaded am fatigued