lots of symptoms, no diagnosis

I have been to 9 doctors now and have been given no diagnosis. So I thought maybe someone else has experienced similar symptoms and was diagnosed. Also, I'm a 20 year old, female.

These are the symptoms I've been experiencing, most of which have been occurring for about 3 months and onset fairly quickly and with seemingly no cause:

Brain fog: I have trouble remembering things. I often forget where I am or what I'm doing, temporarily. I cannot focus or concentrate. I forget the words for things a lot. (I am a student so this is very debilitating).

Joint (and other) pain: Mostly in my hands/fingers, wrists, shoulders, knees. Also frequent bone pain in my thigh and carpal tunnel type feeling in my hands. All of this pain is bilateral, except the shoulder pain is much more dominant in my left shoulder. I also have pain in my glands often.

Extreme fatigue: I sleep about 14 hours per night if I don't set an alarm. I will sometimes sleep through my alarm even if it is located right next to my ear. Throughout the day I am constantly tired and lethargic.

Extreme coldness: I am almost always cold. I cannot go without socks and I sometimes have to wear gloves indoors. Every once and a while I'll get a wave of heat, but other than that I'm always cold.

Hair loss: My hair has been coming out much more than usual.

Medical history:

I passed a small kidney stone about 5 months ago.

I was diagnosed with mild depression and anxiety about 8 months ago, but I have since been treated and my psychiatrist and psychologist are positive that my symptoms don't have anything to do with my depression/anxiety.

I have had blood work done testing my thyroid (I had an extensive thyroid panel). The only irregularity was that my T4 was very slightly above normal and my iodine level was slightly below normal. Also, my Vitamin D level was slightly below normal.

I have tested negative for anemia, diabetes, and mono.

Also, my weight has remained about the same throughout all of this.

Thank you all in advance. I really appreciate if you even read through all of this.

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20 Replies

  • Hi and Welcome ! Could it be B12 - often the symptoms overlap with thyroid and is VERY badly understood by the Medical Profession. Take a good look around the link below and there is a quiz you can do on the site which will indicate your B12 levels :-) Ranges are often from 180 - 900 and GP's state you are normal when your result is 185 - NOT SO !


    Your LOW VitD will also contribute to your many symptoms....are you supplementing with D or anything else ?

    Did your intensive Thyroid panel include the FT3 ? - if so what was the result with the range ? The most important thyroid hormone and needed in almost every cell of the body....

    It's good that you have found this forum - so many people here that are very helpful and understand loads - so we will have you up and running in no time !


    Always important to obtain copies of all test results so people here can help you in more depth....

  • Honestly you about summoned up what I've been going through. I've been have passion too but I have been chalking that up to working and my arthritis... I just jabbing needless in my feet and hands... My step father thinks I might be diabetic... But I'm honestly not sure because of how cold I've been feeling that I think that's where some of my pain is coming from. Something that helped me was seeing different specialist for my different symptoms... That's one way I found out I have ibs on top of my hypo. I really wished I could be more help but due to the lack of doctors I've not seen for over a year...

  • Hello cdt,

    Welcome to our forum and sorry to hear that you are not feeling well.

    Low thyroid hormones can have far reaching effects and all your symptoms could be related.

    Doctors have very stringent guidelines and work within certain test range results. This means you may have a problem .. which could be missed by your doctor(s) until you became further symptomatic and blood results showed a greater difference to the "norm'.

    If you post your test results complete with ranges (numbers in brackets) members will comments.

    Also post any other nutrient & iron results as deficiencies are common in people with thyroid conditions.

    Within you extensive thyroid panel.... were you tested for thyroid antibodies TPOAb & TGAb. ? .. This would indicate Hashimotos autoimmune disease .. which is extremely prevalent in people with thyroid issuers and would account for a gradual thyroid health decline and your feelings of being hot and cold.


  • Your TSH should be lower than the ranges these damn md's go by.

    No higher than 1.5 to 2 at the highest in my opinion. Of course there are so many more things you must go by. TSH is a pituitary hormone .

  • Very typical, only suggestion is don't give up! Keep trying different GP's until you find a good one (hen's teeth, rocking horse poo etc.) once you find a reasonable one get private blood tests done by Blue Horizon and post the results on this forum for the experienced 'Throidies to comment on and give advice. Then take the results for him or her to look at along with any relevant information (often the clued up members can tell you which stuff will be taken seriously by the medical profession) you can get from this site/internet to back your request for treatment.

    Good Luck xx

  • Hi there

    Some of your symptoms are very similar to mine.

    I have been diagnosed with fibromyalgia and chronic myofascial pain syndrome. I have had a few niggly pains and much milder forms of some symptoms for years with a fast onset of more severe symptoms after a horrible year full of stressful events (not all negative) and mental breakdown.

    I'm sorry to say but I had to persevere with my GP for some time before I received any testing or referrals and lots of trial and error with medications. I too wanted fast answers and tried a couple of doctors. I had to go to my GP with a list of symptoms that I kept updating, a diary of pain and symptoms including what I'd eaten, done, how I felt and anything else I felt connected plus I took information about conditions that I felt related to my symptoms. I also asked loads of questions to find out what conditions may run in the family I might not have known about.

    It wasn't until fairly recently (and with lots of pushing to find out if it actually was anything that could be cured/treated more effectively) that I had a lot of blood tests. I'm no expert in what they mean but they showed high ESR, low vitamin D, low cortisol, with many other things being less than optimum including TSH) I find that some symptoms are constant and some symptoms get worse or come on when I'm in a flare up.

    My symptoms over the last 2 years have changed and evolved quite a bit ( which was easier to see with the records I've been keeping) over the last 2 years and I'm now waiting for more investigations and testing for lupus/rheumatoid arthritis and maybe adrenal dysfunction but my GP is sceptical about adrenal dysfunction even existing.

    I've had to modify several aspects of my life due to my medical situation and I too was desperate for fast answers and relief. It took me some time to accept that my GP and other medical professionals needed time to see my symptoms and I needed to give any medication time to do its job. My symptoms actually settled quite a bit once I was able to relax more about it and did some research for myself, looked at any lifestyle changes and engaged with people in different sections of this site relevant to the conditions I've listed.

    I can now see why I had to persevere going back to my GP at least monthly to update on symptoms and also any medications I'd tried. I've also found suppliments to be useful plus massage, hydrotherapy and bathing in Epsom salts.

    My life has changed considerably as I was a very confident and competent middle manager in local authority gaining my most recent job in external recruitment about 4 years ago. To cut a long story short I have finished this job and decided to study whilst claiming benefits. i never managed to complete my degree as I'm 37 and worked since 17 and owned my own home since 19. I was angry at first as I felt that my conditions had stolen my life but now I see it as a great opportunity as I could never have afforded to do this without PIP and ESA. I also get lots of support from the Open University and Student Finance (disabled students allowance) with equipments and some adaptations to exam and study arrangements. I have to make sure I pace myself as I was in a situation that as soon as I felt some relief I pushed myself far too hard and set myself back again (doctor calls it boom and bust)

    I just wanted you to know that you are not alone in looking for fast answers and some of the best advice and suggestions have come from other here on this site in the sections related to thyroid, fibro, lupus and RA. I do feel like there has been a huge amount of input required from me to my GP to get to this point and that in a way I have self diagnosed and requested treatments for myself (which hasn't always been popular) and I actually found a lot of benefit to seeing the same 2 doctors at my surgery so that they could become familiar with me and my symptoms.

    I still don't feel completely stable

    I'm currently taking:

    Butrans 5 morphene patches

    Duloxetine anti depressants

    Nefopam pain killers

    Baclofen muscle relaxants


    Nortriptyline (I'm trialling something else to replace this)

    Naproxen (I'm trialling something else to replace this)

    I also have oramorph and morphene tablets for breakthrough pain but have used this a lot less recently.

    I sincerely hope you find relief and answers, this site and it's super friendly members have been such an amazing resource and I thank everyone so much for all the support and the occasional off topic giggle. I'm also about to go to my first local fibromyalgia support group which I found via FB.

    Feel free to look through my old posts

    Gentle hugs

    Clare x

  • Did your bloodwork include a serum ferritin test? Do you have a result for that which you could post if so? Iron stores can be quite low at your age, and would affect your concentration and mood, even though the full blood count would not show actual anemia. Also, what was your haemoglobin level? Could you post it? Low iron is associated with hair loss.

    Do you have any gut symptoms, like bloating or stomach pain after meals?

    What was your actual TSH level?

    Are you vegetarian, do you drink milk, do you eat fish? (I'm thinking about evidence for absorbtion problems.)

    Did you have a bad virus attack before these symptoms started, flu, or a really terrible cold you couldn't shake off?

    The fact your glands keep coming up suggests to me that you're fighting some nasty and persistent virus, and the body is finding it tough. If that is the case, your body will be limiting its iron absorbtion in order to fight the virus, because infections need iron to proliferate, and this low iron state will have an impact on your energy and mood. If that is what is going on, taking iron supplements won't help until your immune system has defeated the viral attack.

    If that seems to fit you could try taking elderberry pills - I always have frozen elderberries in the fridge. That sounds a bit witch like, but there is some reasonable science behind the idea that elderberries fight viral infections which you will find on the internet. You can get an elderberry pill in the pharmacist - there is nothing to lose, it might help.

    More questions: does anyone in your family have thyroid problems? Are there any other illnesses in your family which might link to the symptoms you are feeling?

  • If your Vitamin D is 'slightly below normal' you can safely assume it is way below optimal. It is definitely worth supplementing Vitamin D, i the UK between October and April, and all the time if you work indoors all day. You will need more than a daily supplement to get your levels up to something optimal. Lack of Vitamin D can cause joint pain among other things.

    Can you post the results of your thyroid test here for people to comment on?

    Have you ever had you Vitamin B12 tested? Vitamin B deficiency can cause similar symptoms to hypothyroidism.

    I hope you get some kind of diagnosis soon.

  • You say your thyroid tests are normal, have you got them? If not get them and post them however 'normal' they appear to NHS Dr etc some of us can see patterns that they will miss but we need the actual results. Did you have antibodies tested for?

  • Have a look at Lupus uk website

  • I had all your symptoms and went to a private GP. He diagnosed Candida Overgrowth and Leaky gut. Neither of these are accepted by NHS! He treated me for them and it has taken time, but it has worked. Just a thought for you

  • I had a lot of the same symptoms - brain fog, unable to find the right words and extreme tiredness were the worse things for me. After lots of tests and exclusion of everything else I was diagnosed with Chronic Fatigue Syndrome and B12 deficiency (then later underactive thyroid). Have a look on patient.co.uk and I think you'll recognise yourself when reading the CFS and B12 deficiency symptoms. I'd ask your GP for tests for this (B12 is a straightforward test but CFS will need a hospital referral to rule out other things including Lupus etc). Good luck, I hope you start to feel better soon.

  • I had all that in 2000. Ultrasound showed a small nodule on my thyroid. Surgeon said my thyroid was beginning to die out and hormone was swinging from high to low. I was put on a slightly high dose of Synthroid to replace and suppress my own hormone production.

  • Hi, I think you may have hyperparathyroidism .. Can you get your PTH and calcium tested . If you check out parathyroid.com will give you heaps of info and kidney stone , fatigue , depression , anxiety , low D , pain in bones etc are all

    The symptoms . That's what I have and what lead me on the path was the same my T4 went high a couple times then all

    These started too happen ...

  • You have CLASSIC symptoms of candida overgrowth. I have it too and get lots of benefit from my new diet. Try eating NO sugar or white flour or yeast for a couple of weeks. Please feel free to email me -< email address removed by admin>-

  • I say this cautiously, but for me a rising blood sugar with A1c moving 5.5, 5.6, 5.7, each year resulted in my great doctor telling me to start counting carbs -- net carbs at 60 - which I did, and the A1c went down to 5.3. Personally, I think it should be lower, but... the low carb diet is working. If you have diabetes in your family (both sides of mine are d), then you might find that diet approach wise. Learn about it, though, don't just dump the carbs in favor of all else. My thyroid symptoms, icy hands, low body temp up to 3 degrees, hair loss, head grog that slowly cleared up by 4 in the afternoon and then stopped doing even that, dry facial skin (I thought it was candida, ho ho) led me to start iodine supps, which worked for a few months. I am not starting the slow process of adding Nature Throid, and it's, but my doc in NY is the one helping me and the system in another state where I teach is arguing that I don't have a thyroid problem, even though I had thyroid surgery many years ago for a benignity. Low normals, and poor T3 conversion mean nothing to them. The upshot: pre-diabetes symptoms and thyroid for me seem to go hand in hand. There are over the counter thyroid supps that will help, but in the U.S., from what I understand, T4 and T3 may not be used--this I read from a post, not from a company that makes the otc. That company told me that the FCC will not even allow disclosure--although I knew that the thyroid was bovine originating in Denmark and New Zealand (who would take U. S. beef). Methylation with B12 is also good, but I found that without the thyroid assistance, other supplements were bothering my digestion--don't even think about it with supplementation. This, however, is my experience only, and I don't have the experience that other writers do on tests, chemistry and how it works, and I am learning a lot from them. Good luck.

  • I am sorry that you are feeling so awful and not getting any help from your doctors.

    It is possible to have thyroiditis which can be short lived (lasting a few months) if you have a virus. Look up De Quervain's thyroiditis, which usually resolves on its own after some time.

    Hashimotos and hypothyroidism have a lot of symptoms that could be other things and you cannot really tell without the test results which would include T3 and antibodies if you TSH is not giving anything away (although hypothyroidism used to be treated solely on symptoms, but one of those would be weight gain which you admit you don't have).

    I am surprised reading through all the replies that no one has clarified whether or not they are medically trained, so beware of any diagnosis.

    B12 will not harm you and will help your body to absorb iron, and Marz gives consistently good and well researched advice, as do the administrators (Marz advice about Vit D has certainly helped me!). Also in the US Vit D is sometimes prescribed to help chronic pain (and it does for me). Do some research to find out how much Vit D it is safe for you to take and invest in good supplements. Get your test results and then put them on here, then people will be able to give you considered advice.

    Most of all hang in there! The many wonderful people on here can help advise you on how to get better! I know that I consistently feel grateful for how I have managed to get my memory back and lose the brain fog, can walk distances again, have lost my bloatedness and have lost the terrible pain that I had all the time.

    Good luck :)

  • Do you have any digestive issues? Constipation or diarrhea? Gas, bloating, urinary issues?

    If so, it may be related to candida. Low thyroid may cause these symptoms because your immune system will be lower and also the symptoms you described. Candida bacteria could be the problem and you might want to get tested.

  • I would advise you to male a list of these ailments and keep a diary of dates and times plus what you are eating and drinking plus your time of the month so the GP can rule out your menstrual cycle and food allergies. I had all of these symptoms and when I was given the correct anti depressant and some vitamin D some of the symptoms were relieved for a while. I won't bore you with my story but years down the line I'm still battling with symptoms and doctors. If you keep a diary you have proof to show the GP. Also keep a diary of your GP visits and what was discussed and decided if anything. This will all help you build a case that you can keep putting under your GP's nose saying you need help. Don't let them fob you off.

    Sorry it's not a cure or a result but it could help. I hope.



  • If I were you I would be tested for Lyme disease, also its Co infections babesia, bartonella, etc...

    Sounds like to me that is exactly what you have. Especially joint pain at your age is unheard of and Lyme causes it.

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