to feel like I could be really unwell?

I was diagnosed with a prolactinoma at 24. It is a benign tumour in the pituitary that over excreted prolactin. However , it also knocks all endocrine function slightly out of balance. My symptoms started with generalised lethargy and exhaustion, often felt like I had mild flu. Eventually my periods stopped and I just couldn’t imagine feeling the same way for the rest of my life.
I had seen the GP multiple times but it was a young GP who was on the ball and looked outside of the box.
Hormone imbalance can cause all sorts of symptoms. The problem is that they fluctuate throughout the day,week & month. You need to see a very clever endocrinologist who can accurately monitor and interpret results.
I now take aromatase inhibitors ( post breast cancer) which reduce eostrogen to virtually zero. I actually feel fine but it causes moderate to severe muscle and bone pain. I am learning to live with it so that I can live essentially.

could it be a type of migraine.
i described my symptoms to someone and she said that was a type of migraine.
i had just thought it was one of my heads , as i called it. i thought migraine would be much more severe pain, and nausea, which i don't have.
it is relieved somewhat by a pain extra tablet, which is a mixture of aspirin/paracetamol/caffeine in one tablet. which is what made me wonder, about yours.

Sorry fibro does not fit.

I could sleep for ten hours go go straight back to sleep. I have apnea and on cpap but that took five years + and a outside sleep clinic for ironically insomnia to diagnose

I can go to the gym but its massive effort but once I'm there I can go on the cross trainer say for 15 minutes pushing myself.

I dont have worse days after a busy or active day. Fibro was mentioned by a neurologist but that definitely does fit my profile.

I could walk around London all day ( huffing and puffing) but my arms burn putting out the washing

I have started the gym and I'm still gaining weight

@IncessantNameChanger if you are managing exercise without all your symptoms getting worse then a ME/CFS diagnosis looks less likely unless v mild. If you are gaining weight without eating more then I would agree it is worth looking into a missed under active thyroid. Companies like medichecks do full thyroid screening for around £80. GP will only do TSH, not T4, T3 and thyroid anti bodies. Should you decide to, once you have your results I would head to the thyroid board on healthunlocked and share them there. healthunlocked.com/thyroiduk

Medichecks thyroid page - medichecks.com/collections/thyroid/

Yes I did. I had and still do extremely high stress levels due to dealing my SEN childrens local authority.

I saw a rheumatologist but he dismissed me as no pain and no skin conditions. He did order some bloods I must check what they are.

I think I'm ready to get proper private bloods. I was thinking about all of the thyriod ones and cushings as I have swelling and weight gain.

I'm really tempted to go on diet now for two weeks to see if it's even possible for me to loose weight. I have started the gym and I'm still gaining weight

@Goodyetalso, I am very sorry to hear that but when it comes to suspected ME I am sadly not surprised. Many GPs still wrongly dismiss or minimise ME. The National Institute for Health and Care Excellence (NICE) ME/CFS guidelines say GPs should after 3 months of symptoms - which you clearly have had - refer a patient with suspected ME/CFS to a NHS specialist ME/CFS team to confirm a diagnosis and provide management advice. I would print the relevant page out (see attached photo) of the guidelines and ask the GP to refer you to a NHS ME/CFS clinic nearest to you. The ME Association provide info on finding the nearest specialist service to you. meassociation.org.uk/nhs-me-cfs-specialist-services/

Do you know what level your ferritin is? I've found out recently that while mine has been "in range" for all tesrs for the past 12 years, it's actually been too low and counts as an absolute iron deficiency (below 30). Further found out that if you are hypothyroid (as I am - hashimotos) then your ferritin needs to be higher, maybe 80+. So all my results of between 10 and 25 are one of the reasons for never feeling well - the others being my thyroid and I also had low vitamin D. I'm hoping once I get my ferritin higher I will finally feel ok.

If your TSH varies, what has the range been ? I was told that anything over two indicates a thyroid that is struggling. Mine was around 2.5 for ages but I felt really unwell and as you describe. Ask to be tested for antibodies, and if you have them, a trial of thyroxine.
My vitamin D was also very low, do you know what yours is ? Having a few things borderline can really affect you.

I’ve assumed I’ve had ME for the past 25 years (although I am much much worse in recent years) but every single GP I have seen dismisses it and I get the “you’re a hypochondriac” look and the shitty pointed comments (“do you come from a medical background because you are using a lot of medical terminology?”) which I find very rude. I use the correct terminology because I’m relatively well educated and proper to use the correct words for things. It doesn’t mean that I sit at home googling conditions and making up symptoms to match them FFS. So basically, I may well have ME but nobody wants to diagnose it.

Have your doctors looked into ME? It's quite a long process to get a diagnosis

Really does sound like Thyroid. Best to get it tested when you have no additional vitamins in your system - some (particularly Biotin) can skew the results .

Look into M.E (sometimes inaccurately called chronic fatigue syndrome) and fibromyalgia. I have both and my symptoms are very similar.

sugar and aspirin giving a short period of feeling a bit better especially stand out- it’s exactly what I use for pain and fatigue attacks.

I have fibromyalgia, plus under active thyroid, low B12. Though in theory he second two are medicated and managed (in reality I may need b12 injections however). You sound like me I'm afraid.

I copied and pasted the ME/CFS symptoms list above and the layout came out badly. Will copy it out again.

All of these symptoms should be present:

1)Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.

2)Post-exertional malaise after activity in which the worsening of symptoms:

is often delayed in onset by hours or days
is disproportionate to the activity
has a prolonged recovery time that may last hours, days, weeks or longer.

3)Unrefreshing sleep or sleep disturbance (or both), which may include:
feeling exhausted, feeling flu-like and stiff on waking
broken or shallow sleep, altered sleep pattern or hypersomnia.

4. Cognitive difficulties (sometimes described as 'brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.

Be aware that the following symptoms may also be associated with, but are not exclusive to, ME/CFS:

orthostatic intolerance and autonomic dysfunction, including dizziness,

palpitations, fainting, nausea on standing or sitting upright from a reclining position

temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold

neuromuscular symptoms, including twitching and myoclonic jerks

flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches

intolerance to alcohol, or to certain foods and chemicals

heightened sensory sensitivities, including to light, sound, touch, taste and smell

pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.

From the NICE ME/CFS guidelines: www.nice.org.uk/guidance/ng206

Finally, I will write out below the full symptom list from ME/CFS NICE guidelines, first the core symptoms then other symptoms that often occur. I hope it makes clear ME/CFS is much more than simply fatigue. A form of long covid is presenting similarly.

All of these symptoms should be present:

Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
Post-exertional malaise after activity in which the worsening of symptoms:

is often delayed in onset by hours or days
is disproportionate to the activity
has a prolonged recovery time that may last hours, days, weeks or longer.

Unrefreshing sleep or sleep disturbance (or both), which may include:

feeling exhausted, feeling flu-like and stiff on waking
broken or shallow sleep, altered sleep pattern or hypersomnia.

Cognitive difficulties (sometimes described as 'brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.

Be aware that the following symptoms may also be associated with, but are not exclusive to, ME/CFS:
orthostatic intolerance and autonomic dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position
temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold
neuromuscular symptoms, including twitching and myoclonic jerks
flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches
intolerance to alcohol, or to certain foods and chemicals
heightened sensory sensitivities, including to light, sound, touch, taste and smell
pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.

From the NICE ME/CFS guidelines: www.nice.org.uk/guidance/ng206

@Goodyetalso, have you discussed the possibility of ME/CFS with your GP? All standard tests will come back normal despite often feeling dreadfully ill.

The NICE guideline on ME/CFS identifies the symptoms of ME/CFS as debilitating fatigue that is worsened by activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties (‘brain fog’). As someone with ME I would point out there are often further symptoms but these are the core symptoms. The guideline says that people with all 4 symptoms that have lasted 3 months or more should be directed to a ME/CFS specialist team to confirm the diagnosis. If this constellation of symptoms resonate then I would ask for a referral to a ME/CFS clinic to rule in or out a diagnosis. If it is ME/CFS then the person must ensure they remain within their energy limits when undertaking activity of any kind due to energy dysfunction/impaired aerobic metabolism. ME is still not taught in medical schools or at most half an hour lecture using the incorrect psycho social paradigm so knowledge amongst GPs is sadly still poor and often incorrect.

As I also said above the NHS ‘CFS/ME clinics’ that you would be referred to can offer little in treatment - there isn’t any - but can diagnose you at least should you have it. There is no treatment due to paucity of biomedical research funding these last few decades into ME just medication if needed for symptoms such as sleep problems and pain.

Link to ME/CFS NICE guidelines www.nice.org.uk/guidance/ng206

All the best.

Have you suffered a long period of stress preceding the onset of this? Maybe adrenal fatigue?

I've been like this for years, since about age 26. I'm now 49. I have EDS with a lot of weird additional symptoms, anaemia, problem absorbing B12, issues with sleep, or rather lack of, and an inability to tolerate cold temperatures. But, all of this only started to develop and effect me around aged 26. And that was after I'd been working 7 days a week in a very stressful job. I've always wondered if stress brought on everything (except the EDS) and I'm not certain any GPS take adrenal fatigue seriously, or even know much about it.

Track your menstrual cycle with your energy and mood.

Keep a food diary. If you haven't been tested for coeliac do that before giving up gluten as you need gluten in the diet to show up antibodies.

Have a look at high histamine and low histamine food before adding lots of new stuff to your diet, just something to be aware of, as a lot of healthy foods are high.

Don't dismiss perimenopause. I've read enough stories of women in their 30s being dismissed because they are too young. Fatigue, dizziness, brain fog are common symptoms, as are aches and pains, muscular and joint.

The fluctuations in how well you feel suggest something different is happening at times, whether it's what you're eating or your menstrual cycle. Neither of those might be the root cause but could help you manage symptoms by tracking.

Arghhh, I’ve had my blood test results back this morning (and they’re private ones so I can look at the results myself) and they’re all FINE. HOW?? My vitamin D has even gone into the optimal range. Just liver function to wait for now and if that doesn’t show something then I don’t know where to go from here. Advice from the doctor who looked at the test results was to try to up my exercise levels. FFS! I used to run/go to the gym 5 days per week but I’ve been unable to even manage a 2 miles walk for the past 6 months - how am I supposed to do that?? 🙄

What's your family history? Any autoimmune conditions?

I realise I didn’t give the direct link to NICE’s ME/CFS guidelines so just adding here www.nice.org.uk/guidance/ng206

Just been discharged from Rheumatology who said cfs and I need to be reffered but happy days- my gp said they they never got that letter so cant help me!

@feelingrubbish22, my answer is in response to @IncessantNameChanger comments but the info may be of interest to you so I have tagged you too, hope that’s ok.

@IncessantNameChanger, I know it’s not much help but if you are found to meet the criteria for CFS or the stricter criteria of ME (I have had ME for 23 years, severely now for many years) I would just warn you the NHS ‘CFS/ME clinics’ that you would be referred to can offer little. Due to paucity of biomedical research funding these last few decades into ME there are sadly no biomedical treatments, just medication if needed for symptoms such as sleep problems and pain.

At most a clinic can give some basic management advice on pacing activity due to the cardinal feature of post exertional symptom exacerbation in the illness in which small amounts of exertion - limit varies from patient to patient - rapidly exhaust you and often bring on or increase flu like symptoms and other ME symptoms. Clinics may also be able to provide letters of support for disability benefit claims if appropriate.

It’s still better to have a diagnosis and to ensure issues like under active thyroid, low B12, coeliac disease, other hormone problems have not been missed and could be an alternative and treatable cause of your symptoms.

Incidentally I began thyroid meds in the first year of being ill after seeing an endocrinologist privately who prescribed thyroid meds to those with levels just within labs normal level ranges. I was still far from fully well but my level of functioning improved on the meds and so I hoped that my ill health was due to missed under active thyroid and not ME and I would continue to improve on the thyroid meds. The following six years I didn’t improve further but didn’t get worse and then I deteriorated and have remained at the severe level of ME ever since. Some diagnosed with CFS or ME can be missed under active thyroid but far from all.

Finally, I share the ME ICC criteria and would suggest if the particular constellation of symptoms fit your symptom picture then a ME diagnosis may be a possibility. me-pedia.org/wiki/International_Consensus_Criteria

I would also read England’s NICE guidelines for ‘ME/CFS’ which were finally updated in October 2021. www.nice.org.uk/news/article/nice-me-cfs-guideline-outlines-steps-for-better-diagnosis-and-management

Sticking my head in because this is me too. I am so so unwell, getting worse every day and it’s been going on for years. No doctor will help me and they just say that my blood tests are normal but I suspect they’re not. I honestly feel like I’m dying. I’m not help to you but I’ve seen that there’s a few of us in the same boat so maybe we can check in on each other and see if any of us have any success.

I’ve done a few finger prick blood tests through Thriva this week and am waiting for the results to come back - no idea if they’ll show anything but I was lost as to what else to do.

This has happened to me twice, when I moved to the middle East my go suspected I have hypothyroid and did a weekly test for 6 weeks because I was on the pill and lo and behold it was not only low but my antibodies were over 1000. Second time felt like I couldn't move or think, sweating constantly and anxious to the point I wondered if I was bipolar. He took me off the pill and put me on HRT and within 3 days I was my normal never stopping self. You just need a decent doctor, mine here used to be a UK GP qns says he feels guilty now looking back at the culture of refusing treatment and fobbing people off to meet quotas. He never tells anyone tonsillitis is a virus now he's here, just gives the medicine we need and deserve.