Im a 39y female with a lifetime of fatigue/illness. Past year, ive experienced even worse fatigue/cognitive function meaning ive been unable to work and really barely living, im a single parent so its affecting my daughter too. Im afraid i will almost certainly lose my job and fear my life is being wasted by whatever condition plagues me.
Been under neurologist for months, ruled out serious brain conditions. According to GPs Ive had blood tests for "Everything" and nothing is abnormal in bloods.
Ive now realised that NHS tests are not quite the checks we believe.
Ive started to suspect thyroid as a potential. But Before i delve into thyroid as a cause and order my own tests i wanted to run my history past you all to see if its likely?
From Childhood & continue all through life always fatigue, fevers, flu-like aches, sickness, sore throat, mouth ulcers, sluggish bowels. Frequently missing school.
Teenage/Early Adult working life (late 1990s) - diagnosed M.E.
Symptoms went away during pregnancy at age 23 then got worse again post-natally.
Gradually felt a little better by age 30's whilst stay at home parent/working only part time. Then started full time busy job in 2013.
2016 - severe back pain/ ceased up. Calcification in toes (Painful)
2016/2017- aways feeling low fever, brain feeling 'hot' inside, achy body, put down to 'Viruses'.
November 2017 - brain suddenly 'stopped working' one day. Cognitive impairment, blurry vision, visual disturbance, feel disconnect from self. Extreme fatigue, sleeping all the time plus many more.
Since then Ive been signed off for reasons of 'stress', 'tiredness' symptom. After weeks of counselling, psychotherapy it was determined not anything mental health. Referred to neuro for MRI . Not brain tumour, M.S etc. Neuro tentatively diagnosed unusual Acephalgic (silent) Migraine. I cant tolerate the medication so not taking anything at all.
So i have many of symptoms on hypothyroid list but I know many of them are dumped into CFS/M.E.
I am normally on the optimistic side of life but im feeling despondent at ever finding help. Does my history fit with Thyroid or does thyroid not usually go on this long without being detected?
Sorry for long post. Its just that the tests are quite expensive. Do i definitley need to get reverse T3 done as that seems to be the one that increases cost and turnaround time.
Many thanks for your time reading and any comments truly appreciated.
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I would definitely get a full thyroid panel done. Most of your symptoms can be thyroid related, for sure.
I’d also suggest you get an Adrenal Stress test done – salivary cortisol measured at four key points of the day. The adrenals and thyroid are very interlinked, and if you've had a longstanding thyroid problem, then your adrenals will have been overcompensating for a long time, so it's crucial to support them too.
I too had an M.E. diagnosis. And yes thyroid problems can go undetected – I was 50 before I had a private thyroid panel done. I’d been asking my GP my whole adult life to test for hypothyroidism but the result always came back as “normal”. I now know that the TSH test used is woefully inadequate!
I plumped for the test that also included RT3. You’ll see mixed views on this forum. Some say that you can work out the RT3 from the rate of FT4 and FT3. Personally I wanted as much information as possible. But if money and time are against you, then the most important things to get checked are FT4, FT3, thyroid antibodies, plus all the various nutrients that are critical to thyroid function. At the moment medichecks.com have a 20% discount which will help with the cost. See the code in this link: healthunlocked.com/thyroidu... . This test: medichecks.com/thyroid-func... or this one: medichecks.com/thyroid-func... would do. Personally I think it's important to get as full a test as you can at this stage so that you can really see where you're at.
If you go ahead with the test, post your results here for feedback. When I did my test a year ago I could hardly bring myself to read the emailed results in case they were yet again all "Normal". But there it was, in black and white, that my FT3 (the most important thyroid hormone) was very low. I sobbed!
Keep in touch - don't want to overwhelm you with information right now, but happy to share with you any resources and tips that I've found helpful.
I’m so sorry to hear that you’ve struggled with this fatigue for so long. I’ve had it on and off since my teenage years too (35 now and absolutely exhausted). It is such a worrying thing feeling like you’re struggling to keep on top of things, and not knowing what to do next.
However, ShinyB’s advice is great and it’s definitely worth getting a thorough test.
I haven’t looked at those Medichecks links but I’d imagine they include B12, folate and iron/ferritin. Any low values for any of these 3 can cause debilitating fatigue if not at optimal levels, they also interact so even if only one is low it affects the others (and plenty of other bodily functions are linked to them too).
Some of the symptoms you’ve mentioned (poor balance and psychological symptoms like depersonalisation) *could* match up with low B12 so definitely try and get as comprehensive a test as you can afford.
I’m not in a position to advise you to do anything but as far as I’m aware B12 is pretty harmless if you start it gently as a low dose supplement (in combination with activated B complex, to include folate NOT folic acid, and see how it goes).
I hope that whatever you do next you get some answers and start to feel better.
There is another hormone cascade that you should look at and ask for tests on and that’s your sex hormones, oestrogen, progesterone and testosterone. There are a lot of overlapping symptoms between sex and thyroid hormones and you dropped a big clue when you said you felt better when pregnant. It’s important which day of your cycle the tests are carried out on.
Inadequate oestrogen and testosterone means the body can’t utilise the thyroid hormone properly. We should start to add sex hormones to the list of nutrients vital to optimise.
Thank you so much for replies. I think i would prefer the test with the rT3 but the test without is so much quicker (& cheaper) i think id rather know sooner than later to see if this is the way to go. But I will def incl the test with B12, D, Folate, Ferritin and with kindnesa of this forum, hopefully figure out anything else from there.
Question about Adrenal test is that definitely the saliva one not the Cortisol blood test?
With regard to sex hormones, this crossed my mind too although because Ive had symptoms going back to even say, age 5 - i thought less likely. Theres something i didnt mention about this in my first post- Ive had injection contraception (Depo Provera for 15 years and Sanyana Press for past 1 year.)
No menstruation at all in 16years.
Honestly, i think part of me knows the reason i have continued these Progestin injection was chasing the hope to replicate in some way, the hormones of pregnancy and Ive been too scared to stop it.
So bearing that in mind i wasnt sure which sex hormones to test for as not sure if it was worth doing with the Progestins always in my system.
I did consider Medichecks Female Hormones Test in my 'basket' but dont have the knowledge to interpret alongside my injection. Also as I was unwell in early childhood i thought perhaps wasnt so likely that. The test i was looking at does FSH, LH, Oestradiol, Prolactin. Not sure if that would be useful?
Dont know if that makes sense?!
[Edit: just to add that my natural cycles (when i used to have them!) were very unremarkable. Light, Pain-free and no emotional effect. The cycles didnt seem to affect my other symptoms, which would carry on regardless of where i was in cycle.]
Thanks again so much for your comments it is very much appreciated. I feel very alone ans frustrated in fact i almost phoned Samaritans the other night bc of feeling so lost and desperate.
Your story sounds very similar to mine. I have been on this forum for a couple of weeks now as my symptoms especially the extreme exhaustion has got considerably worse to the point my every day life is affected. I am 37 and i feel like i have the body of a 70 year old.
What brought me to this page? I went to gp in June as i thought my symptoms were depression, i mean what else could it be? I had, had bloods taken throughout my life as i had suffered from exhaustion from my early 20s possibly even before. But after being on sertaline for a month and enduring horrific side effects i did not feel any better so I went back in August and told gp that it wasnt working and i know something was going on. He referred me for blood tests and mentioned thyroid. While i waited for my test results i came across this website and this amazing community.
My results came back normal and thanks to the advice i requested a print out of my results and could see I was only ever tested for TSH. So i decided to get the full thyroid function test done with medicheck which i paid for.
Now the medicheck website did not give me an option to put down my symptoms, so my results came back with the Dr's note saying everything was fine, however my folate was below the level. I was devestated and so upset. However when i printed my results on here all these wonderful people told ne my thyroid levels although in range were really low as were my vitamin B12. They gave me tons of advice and i made another appointment at my GP.
I swear i studied for this appointment like i was taking an exam. However i went to bits in the GPs as i was so tired and really unwell. But every test i was advised to ask for on here i requested and i am just waiting for the appointments to come through.
I wish you luck and this community will help you with your journey xx
Also i do have other symptoms but the fatigue is the worse. I get bloated, constantly constipated and then i get sudden diaorrhea (thought i had ibs). I have been diagnosed with labrynthitis and go through bouts of that. My hair is really really thin, clumps come out after a shower. I have gained quite a bit of weight but i know my diet and no excercise contributes to that but i feel dizzy and nauseous after excercising. I am really really emotional and the last few months i have cried nearly every day. When i went back working full time when mt daughter went into high school i would say my symptoms started getting worse. I fear eventually i will have to cut back my hours but right now i cant afford that.
Thanks for your comments. Its no joke not even hit age 40 and feel like theres nothing out there. Im sure life shouldn't feel over before 40.
Id been signed off sick from my job as a P.A. since last Nov. Tried a return last week bc of needing salary but theyve now agreed i need to try alternate days (not even full days.) I like my job & want to be there but its impossible to go back properly right now.
My physical symptoms there are quite a lot. Incl the weight, constipation etc.
Emotions are not something i can really relate to. Im naturally neither up or down. Getting teary is exceptionally rare for me on the odd occasion the tiredness is overwhelming. If anything, Id say my emotional 'flatline' is a symptom itself.
This is a godsend of a forum isnt it. Looking forward to getting my testing done so i can find out if thyroid is a key to improvement.
Hypo can go on for a whole lifetime without being detected, because doctors are loath to do the testing. They rarely do it off their own bat. It sounds very much like you could have a thyroid problem, but you won't know till you get tested.
In answer to your question, rT3 really isn't necessary. It doesn't give you any information that you can't find out in other ways - bit complicated to go into detail, but take my word for it, Honest Goose, they call me! - you don't need it.
U&Es (urea and electrolytes) should've been tested, as they can leave you tired when just in range.
Lyme disease is a possibility, though private testing is expensive and unaccredited and would still leave you struggling to get treatment options, let alone ones that work. If you have low plasma viscosity you could be immunosuppressed due to Lyme disease, and prone to long-lasting chest infections, reactivated EBV, warts etc. Neuro-Lyme (cognitive and vision problems), as opposed to arthritic Lyme, doesn't produce the antibodies tested for by the NHS.
In contradiction to our esteemed greygoose, I've found NHS doctors keen to test me and my family for thyroid issues, perhaps due to a history of other autoimmune conditions. I've seen it in print in a medical textbook: "have a low threshold for measuring TSH (in yourself, your friends and your patients)." Whether any notice is taken of the results, or correct interpretation applied, is a different matter.
Thank you. I had a normal WHOLE BLOOD test on NHS in January which was all in range. Not sure if Urea and Electrolyte would have been on it?
I did get TSH in January too but it was 'normal' so i need to ask for the report.
Re. LYME yes i had heard about this and it sounds a lot like me apart from not recalling a Tick Bite. The private blood testing for this seems you need to do a preliminary test and then the expensive one. If there are different choices for this How would i know which test could pick up the Neuro-type Lyme disease please?
Fatigue: So common that it is a variant of normality. Only 1 in 400 episodes of fatigue leads to visiting the doctor. Don't miss depression. Even if depressed, still rule out common treatable causes e.g. anaemia, hypothyroidism, diabetes. After history and examination: FBC, ESR, U&E, plasma glucose, TFT, CXR. Follow up to see what develops, and to address emotional problems. Take a sleep history.
It's usually tested if it's expected to be high, and high plasma viscosity is associated with lethargy, confusion, cognition problems, visual disturbance etc., and can be due to high red or white cell count, and taking the Pill.
A non-mainstream Lyme disease test is for CD57 lymphocytes, and these are low in patients with long-term infection, particularly of Neuro-Lyme. ncbi.nlm.nih.gov/pubmed/112...
so plasma viscosity (on the NHS) may be the better bet, when it comes to discussing it with your GP, with the backup of the article linked three paragraphs above.
Unfortunately, many patients are fobbed off by GPs and consultants, and labelled as having ME/CFS or fibromyalgia or FND.
Nymph ticks can cause an infection, and not be noticed due to their small size (poppy seed) and because they (and other stages of tick development) anaesthetize the site of the bite. Although only about 10 per cent of ticks are thought to be infected, bites can occur in parks and gardens and even indoors, if brought in on pets or clothing. It's fair to say the whole UK is affected, though there are hotspots e.g. Exmoor, the New Forest, Thetford Forest, the Lake District, the North York Moors and the Scottish Highlands. So, your travel history could be important to a consultant (some of whom deny the existence of Lyme disease in the UK!).
Borrelia garinii is found in Europe (including the UK), and more likely to cause neurological symptoms. The EM (bull's-eye) rash doesn't always occur, and may be hidden by hair or not seen due to being on one's back, for example. For neuroborreliosis, after ELISA and Western immunoblot tests, cerebrospinal fluid would usually be tested, meaning a lumbar puncture. For private blood tests, Armin Labs in Germany could be used, but wouldn't be taken notice of by the NHS (and could be used to label you as a hypochondriac). Medichecks also offer tests (under L for Lyme), but limited to Borrelia burgdorferi and a duplicate of what you could get via the NHS. I've explained my history to my current GP and was told no treatment is available. I had an EM rash, so a test isn't required, though I wouldn't say no to one, even if the spirochetes have burrowed their way into inaccessible places. There are several anecdotal reports of diagnostic and treatment success with bioresonance, which don't appear to be due to the placebo effect, as people feel temporarily worse. Personally, I'm taking lauricidin, nattokinase, serrapeptase and cistus incanus tea. It could be coincidence, but finger warts I've had for five years are almost gone after 10 weeks on lauricidin, and areas prone to skin infection on my legs are no longer overly warm to the touch. I've been feeling tired and wrong in the head this year, so I hope there's an almighty battle going on in my brain, and I'll come out the winner. My sleep improved after three months, mainly on Doxycycline, a year ago, for skin infections, but is now worse than ever. Antibiotics for late Lyme are unlikely to be effective, and long courses carry their own risks.
So, just to check if you dont mind me asking? are you treating yourself for Lyme with the products u mentioned? Because you know you had a bite?
My thyroid came back with nothing to discuss. I am losing a battle with myself here to keep going and feeling desperate. Ive failed with cant read the in depth links its just too much with my brain, the words and info wont go in!
The german tests ive looked at it appears a Uk company sorts it all out but even then there are many tests to choose from, i wouldn't know which to choose. & None say Garinii?
I wonder have you ever come across a person that had Lyme their whole life. If this is me then i must have had the bite as a baby or toddler. My mum says i was susceptible to infections even as a baby which developed into frequent illness as child through adult. So thats when im taking my condition back to, as early as can go. I wonder if that means its more a problem that existed in my own body from birth rather than something that happned to me later.
I hopefully have a 3rd neurologist appt next month. My GP thinks it possible he 'may' choose to do a lumbar puncture but for what? I am clueless. If so i wonder if theres anything i can ask him to while hes at it?
Ive just so very much had enough now, i dont know how to keep going like this. So much of my life has been wasted already.
Thanks in advance for any further help you able to provide .
Yes, I had a bite 18 years ago, which initially ulcerated (due, I believe, to a tularaemia infection). When I went back to GP for follow-up an EM rash had developed, and my GP wondered if it was Lyme. I didn't know at that time that the EM rash is clinical confirmation for Lyme. An Internet search found some horror stories, which didn't match my experience, but I was tired and aching within a year, sufficient to restrict activities and give up cycling (I still have dreams akin to your avatar and username!). Over the following five years, ulcers appeared on other leg, too; had fevers; TSH = 3.8. Cognitive issues after about ten years. Looking back I blamed a lot on my thyroid, which went haywire during my mum's end of life care. There's anecdotal evidence of high stress events triggering overt thyroid problems in those with Lyme disease.
Last year I had skin infections which took three months to clear after three different antibiotics. The infection can get in through a tiny nick in the skin, so I was concerned it would strike again: it seemed barely gone when the final antibiotics had been finished. They were given by a hospital doctor, who told me my CRP was over range, but not by much, and my white blood cell count wasn't elevated. The intra-muscular antibiotic I'd been on may, I think, have been still getting into my system, or it may have been immune deficiency due to Lyme. The infections can cause fibrotic changes, which nattokinase may be able to dissolve. Nattokinase is also said to be a "biofilm buster", attacking the hiding places of Lyme and other bacteria. Cistus incanus tea and serrapeptase are also biofilm busters. Lauricidin is said to disrupt the fat layer enclosing bacteria and viruses, allowing our own immune defences to deal with them. Its use in Lyme disease is described at: ppt-health.com/lyme-disease... Those products aren't supplied to the UK, but there are positive reviews on US-amazon, and Lauricidin is available from amazon.co.uk (it works out much cheaper than monolaurin pills, but is taken in the form of small pellets, so a very small dose may be used, if required due to bacterial die-off symptoms).
I haven't been tested and am using a broad treatment protocol which is affordable, costing £1 or so per day, and hopefully won't sound too cranky if mentioned to medics. There are herbal protocols e.g. Buhner, Cowden which can be bought and Stephen Harrod Buhner has authored several books on treating Lyme, co-infections and viruses. I've read several anecdotal reports of people finding herbal protocols successful for late stage Lyme. Similarly with bioresonance, which diagnoses as well as treats, but could be a complete waste of time and money.
Congenital Lyme is thought unlikely, as the infected foetus doesn't complete gestation. Partners may infect and re-infect each other. Bartonella may be congenital, and cause growing pains. Babesiosis can cause haemolytic anaemia, which may explain your over range ferritin (or it could be due to another infection, or malignancy).
A lumbar puncture is used when there's a suspicion of an infection crossing the blood-brain barrier, as in late Lyme disease. The cerebrospinal fluid would be tested for infection.
I hope some of the above is of some help. Best wishes!
Thanks os mych. I just wanted to come back on and say thanks for this info. I havent ignored any of the advice provided. Really been struggling a lot so im drifting with no relief; getting worse in fact. Lyme sounds really tricky to get to bottom of and allieve. While im waiting for neurology who are really letting me down- Im gonna look at parathorid , pernicious anaemia and adrenal blood tests.
Have a look at Dr Sarah Myhill's website. Lots of useful (and free) information there. Lifestyle changes are her big thing and her food regime is challenging but she seems to get results!
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Dont want to sound like a hypochondriac...
Chronic Fatigue verses Thyroid problems = being taken of Thyroxine and being put on Erfa.
Why does my thyroid do this ?
Does my thyroid makes these symptoms?
Thyroid or Chronic Fatigue 
