I've been on here for a little while and posted a couple of times as was quite convinced my problems could have been thyroid. However, my symptoms got much worse recently and I was in A+E twice over past week suspected stroke. This was due to numbness/tingling in mouth, face, arms and hands. Extreme lethargy, almost non-responsive and very high diastolic blood pressure. I've also had vibrating/trembling feeling in brain and torso/arms.
I was sent home as non-emergency but to urgently seek primary care - which of course I have been to G.P. numerous times. One of GPs thinks M.S. and we have both been pressuring neurology for a follow up since July. They are just too busy. I have no idea if it is M.S. and I am obviously hoping to find out it is something else.
That acute 'episode' has subsided, but I am still incredibly struggling with the sedative feeling in the front of my brain which is present for the most part of the day along with visual disturbance. I have noticed some relief from that sensation for a few hours in the morning and again in evening and night but I sleep for about 10hrs at night so any relief of it at those times is useless to me. I am seriously debilitated by this.
The neurologist previously thought a rare type of migraine but I couldn't tolerate the medication as it made me even more drowsy when that was my main symptom just downright dangerous really to try to live in a sedated state.
I honestly have zero life now. I had already been off work for a year and then tried a very easy-going return which even that was not do-able.
I have had quite a few tests done privately in the meantime to figure out if thyroid or other things that have been mentioned to me on here. Nothing comes up strange except for Ferritin and I have no idea why that might be.
So, I guess I will say goodbye to this forum shortly but wanted to give one last post to check if any of you knowledgeable folk have any more advice on what to pursue as I've come up blank with many of these tests.
I will anyhow still try to increase my Vit D and B12 although I really sense here that there is something else happening in addition to that.
Many thanks
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GoingthruTreacle
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I really don't think you should give up on thyroid. Your TSH is too high, showing that your thyroid is struggling - even over-compensating, which is why your Frees look good. But, how long can that continue?
Your antibodies are negative, but is this the first time you've tested them? One negative result does not rule out Hashi's because antibodies fluctuate. And, you can even have Hashi's without high antibodies. Have you ever had an ultrasound on your thyroid?
Whilst I think it's sensible to continue to search for the possibility of 'other things', I do think it's equally sensible not to give up on your thyroid. Keep up periodic testing. Keep reading on here in case something goes click and missing part of the puzzle falls into place. And, above all, trust your instincts.
Thank you. My Instincts are failing me but honestly at moment- i am kind of veering towards something other than thyroid but im just in a complete muddle and exhausted right now from fighting my battle for answers.
Yes thats right, ive only had the 1 test of antibodies and never a scan. Ive only started looking at thyroid this year so at least i have a base to keep checking. I been using medichecks so i can keep track on there. Thanks for your support greygoose
I would definitely not give up on this forum or thyroid issues. My symptoms have been so similar to yours. I have no functioning thyroid ~ it died as a result of vaccine damage/EBV but just like you, I have had lifelong symptoms, constipation, etc. so something was always wrong from the start.
It took me many years of disability to be finally diagnosed. Then placed on high doses of Levo and although better, was never really well. Always exhausted with all the symptoms you mention, even the buzzing chest/arms. Taking advice from here, I am slowly recovering on T3 ~ many of my symptoms have literally vanished, although adrenals have a little way to go to catch up.
On Levo, my results were always 'normal' or 'in range' albeit T3 a little low. However, you may have some sort of thyroid hormone resistance at cellular level, which would make blood results meaningless. I would say at least read the work of Dr Lowe, now sadly deceased, but a true genius re thyroid disorders.
I'm useless on net, and can't post links, but you may have read his views on fibromyalgia already as shaws often posts links, and I've read many papers on resistance/transport issues on here ~ there's still much to explore.
I cried when I first read parts of it, as it described my condition precisely. I have been diagnosed with ME/CFS/FM etc. for 25 years, with 'normal' results, and only on here did I get answers. It's just a thought...it would be a shame to miss something at this stage. Please stay with us for a while longer, just in case... x
Thanks. I detest the M.E. diagnosis that i was given as a teenager in 1996 .it has blighted me ever since as that is the apparent cause for everything now. I dont believe these days they would be allowed to diagnose ME/CFS in those circumstances as those symptoms had always been there from toddler age. I believe they can only diagnose it if symptoms are new.
Its confusing for me that since the onset of this new manifestation a year ago- i have lost many of the old symptoms (aching, fever, sore throat/glands, mouth ulcers) replced by the neurological brain/nerve related symptoms i describe. So basically the problem has moved from body to brain.
Ok thank you i will try to digest some information, it may take me while before i can read in depth but i can see how it i possible that i may have some hidden resistence - oh why does it hve to be so difficult! Id really love to find a snippet of a decent clue, so fed up of clutching at straws x
I definitely don't think your thyroid levels are optimal - your FT4 is just below mid-range and your T3 just above. That might also be impacting directly on your cholesterol reading - commonly elevated in association with hypothyroidism.
Regarding your ferritin, elevated ferritin levels are commonly due to causes such as acute or chronic inflammation; and more rarely to more serious disorders. A more specific diagnosis is made in conjunction with the presence or absence of associated abnormal results - what conclusions has your Dr reached regarding the ferritin result?
In terms of the symptoms which took you to A&E, with the exception of the "almost non-responsiveness" I experience most if not all of them on a daily basis, including the visual disturbances, and painless migraine; and whilst beta blockers 4x daily improve some of them, it's not all of them nor completely; but in my case my neurologist diagnosed essential tremor (I think many people's understanding of essential tremor is just of a hand shake, but it can be so much more - without BBs I can intend to walk from A to B but end up tangentially at Z, and even with BBs I can't stand still, when say, waiting to be served, without feeling nauseous and faint). So I would definitely echo the advice of greygoose in her final paragraph.
Thank you. I will still keep an eye on my levels, other people hve suggested a cellular level resistance - i just dont know, there could be many things.
At moment i am pinning hopes on when i see neurologist and for him to possibly prescribe something to help me.
Regarding Ferritin - to be honest i have not shared these with a medic professional yet. (I just got results back this week) Ferritin results were both with Medichecks but as part of 2 separate tests.
I am scared to speak to my GP about having private tests as i just know they will say im stupid paying for them and the tests not even come up with anything concrete. I know i need to take my results into GP at some point but last time i spoke to her she was horrid to me and said "i should just stop looking for answers to my symptoms as i wont find any."
I guess I will have to keep searching.
I just wondering Do you have any formal diagnoses?, i know you said you have tremor but have they said more thn that. Thanks Maisiegray
GoingthruTreacle There appears to me, to be no indication of thyroid hormone resistance. You would usually expect your blood results to show high levels of thyroid hormones (thyroxine and triiodothyronine) along with a normal or slightly high level of thyroid stimulating hormone. Your's don't match that profile. However, this explains the syndrome: yourhormones.info/endocrine...
You don't have to show your GP your results unless you feel it will be beneficial to your case. Many of us use private testing simply to monitor our self-medicating; but for instance, when my Thriva tests showed my results were dire without T3, and separately I'd had a positive result to my DIO2 test, I showed them to my Endo - but otherwise I keep them to myself. Your GP can have a view about private testing, that's her prerogative of course, but that doesn't permit her to be rude or insulting. Taking someone with you as a second set of ears, can often inhibit that sort of behaviour, or you can tell her you plan to record the appointment, which is your prerogative .......
After my MRI and various tests such as trying to push me over etc, my diagnosis was essential tremor. Whether that continue to be the case, or ever was "just" that, as my symptoms develop, who knows, but that's it for now. There are many MS people in the LDN groups, and I used to wonder to myself how my symptoms aligned with theirs, but therein lies the way to madness.
That is interesting thank you for your comment on thyroid hormone resistence as Ive not got round to reading about it yet. To be honest, the more things that are LESS likely is better for me, because if i can rule things out that means less possibilities to pursue. I am certainly on a road to madness trying to find answer, maybe my GP was right after all and i should just accept my life the way it is but i just cant do that - i was having a good life with lots of opportunties on the horizon which are now lost to this illness. I am not prepared to accept it. Thank you so much for replies it is very comforting knowing real people are there and care enough to reply.
Once upon a time - before blood tests were introduced we were given a trial of NDT (Natural Dessicated Thyroid Hormones) and if we felt an improvement - we were diagnosed and took NDT for life.
Your B12 is very low - have you had the 'intrinsic factor' tested to exclude pernicious anaemia. Both low B12 and PA can give symptoms.
Your Vit D is too low. I will add in SeasideSusie who is very knowledgeable about vits/minerals.
The blood test results above - were they taken at the very earliest time? Fasting?
Since blood tests were introduced many people have been diagnosed with Fibromyaligia, CFS and ME. They didn't exist before the introduction of levo and blood tests. It was all about clinical symptoms:-
I shall also give you a link re Thyroid Hormone Resistance and Dr Lowe (Scientist/Researcher) was an expert. Unfortunately for us he had an accident and died.He stated that Fibro was caused by T3 not getting into our T3 Receptor Cells and a person who had this condition only improved by big doses of T3. (I am not saying you should do but I doubt any modern doctor would know about Resistance of T3. T3 is the only Active thyroid hormone. T4 (levothyroxine) is an inactive hormone and converts to T3.
Thank you so much for the links. Much appreciated, ive not heard of the doctor. i will really try to read the Dr Lowe info but im sure most people on here understand how hard it cn be to read and compute info when neurological symptims getting in the way.
I received my ME diagnosis as a teenager after frequent illness from as early as myself/my mum can remember (baby/toddler) Diagnosis stuck with me ever since. Even though my symptoms this past year are completely different and all brain related rather than bodily fatigue.
I m aware from on here how serious a B12 problem cn be. I did had intrinsic factor done earlier this year, it was negative.
But I have also just sent off an Methylmalonic Acid urine test today.
My blood tests are all fasting and morning, usully earliest i can get is between 9am/10am.
It seems to me that if thyroid is my answer then potentially it sounds most likely to be a resistence problem. I dont hve the energy to keep battling hard through it all right now but hopefully ill get breakthrough soon. Thanks so much for your comments & support.
T3 is the active thyroid hormone which controls the metabolism and therefore the symptoms. Your Free T3 is in the top half of the normal range, so you should not have severe hypothyroid symptoms.
As you are still having what appear to be hypothyroid symptoms, one possible cause is a genetic condition commonly known as Thyroid Hormone Resistance. It causes hypothyroid symptoms and requires very high T3 levels (often above the top of the normal range) in the body to overcome the resistance.
As it is genetic if there are other family members with thyroid problems, fibromyalgia, CFS, ME, Coeliac Disease, MS, Heart Disease or depression this would further support this possibility.
My mum admits she's experienced symptoms like mine throughout her life (but never done anything about it.) Shes very accepting of things and doesnt ask questions. If the doctor tells her done 'Full Blood Test' she thinks thve checked her for every known condition.
I have One full sibling (he is not exactly 'healthy' but no diagnoses) & Five half-siblings (1 has known hyperthyroid disease)
I will keep in mind the possibilty of genetic hormone resistence along with everything else. Thank you
This article recommends that Active B12 below 70 warrants investigation for B12 deficiency viapath.co.uk/our-tests/act...
Do you have any signs of B12 deficiency - check here b12deficiency.info/signs-an... and if so list them to show your GP and ask for further investigation. Do not supplement B12, folic acid, folate or B Complex until further investigation completed as they mask the signs of B12 deficiency.
Vit D: 70 (50-200)
The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L. For your level the Vit D Society recommends the following
To achieve 100nmol/L take 2000 IU D3 daily
To achieve 125nmol/L take 3700 IU D3 daily
To achieve 150nmol/L take 5800 IU D3 daily
Retest after 3 months. When you've reached the recommended level then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
There are important cofactors needed when taking D3 as recommended by the Vit D Council -
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, (D3 four hours away from thyroid meds if taken).
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, (four hours away from thyroid meds if taken)
Thank you so much seasidesusie. You were very kind to reply to me on a previous post as well and i had noted the relevnt Vit d requirement and extras needed with D3.
In sheer desperation for answers i find ive done much more tests than i can afford . I hve today also sent off a Methylmalonic acid urine test- it will tke a couple of weeks for result.
I do want to speak to GP about Ferritin but building up courage to go back as i didnt have good experience when last at GP office and have to show them my private results which they wont approve of.
While i knew i was ordering tests i didnt supplement anything but i guess i can now start the vit D.
Yes, the above advice re B12 is vital...I have suffered damage as a result of being low, and was never informed by GP surgery. My B12 was always 'just' in range, but folate well below range for decades!! Please investigate and act on this 🙏 x
Hello. Goodness me, no definitely not from GP. Only the more common ones are GP.
Unfortunately, perhaps foolishly for me, ive paid for lots via Medichecks.
Sheer desperation led me to do this and so now i am in £100s of debt to my sister as well as being unwell and unable to work.
Was it worth it- for me, the length of time ive been waiting for help - I think it probably is - as it was making me crazy wondering about possibility of some of these tests and ive been in a horrid feeling of limbo. So although the results point to nothing definitely, at least i know the answer on those particular questions and if nothing else, it rules out some things.
I thought you must have an amazing GP😂 Even if I took those to my GP he wouldn’t look at them, my rheumatologist might though. I might get some done later, trouble is to get the blood for my tests I usually have to go to a main hospital, due to collapsing veins. Think I have blood test envy looking at your pic🤣
I can actually understand what you mean about blood test envy!😂 I have an odd urge to try other tests but know theres not enough reason to believe any more would be helpful to me right now.
I havent shared any private results with my GP yet but i might give them to my neurologist just so he has a bigger picture when thinking about any diagnosis and can rule things out if he might be wondering about certain conditions.
I expect you would be able to arrange tests at the hospital that you require, but i would suggest speak to the company first to check.
I firstly got given a silly Superdrug phlebotomy in a town i didnt want to travel to (it was closest as crow flies but awkward travel). Medichecks easily changed it to a private hospital that was easier for me.
I have only 1 small vein or my hand thats any good for phlebotomy & that does depend on the skill of the nurse but for me they manage to get it in the end.
Thank you for your reply😊 Did you say you get visual disturbance? I get weird visual stuff all day long, every day. They say it is migraines?? Take care x
Hi yes emee visual disturbance is horrid. I have it majority of day and its hard to explain what its like. I do actually have some improvement in mine for a couple of hours after waking and then it relieves again later in evening (but then i am going to bed so thats not useful).
In July my neurologist did suggest 'acephalgic migraine' which means without the headache part. But he also contradicted this because migraines are not supposed to present every day - there should be some days without symptoms.
So if its all day long, every day - i dont believe it could be migraine.
Thank you. Yes i am taking B12 issues seriously and am very worried about my neurological symptoms being irreversible.
There is ZERO chance of GP doing anything B12 related unless b12 blood is out of range. My GPs (choice of 5!) are not approachable and a few plain nasty for tht matter.
I have sent off a Methylmalonic acid urine test today. If B12 is what causing my problems i would like to get my GPs to accept it and provide the treatment.
GPs are just putting all the responsibility over to neurologist now and refuse to discuss anything else.
Thank you very much for comment, i have a look at PA group.
Thank you so much yes, I will look into it. i am to be honest a bit wary of homeopathy as i have seen a homeopath before and it was very expensive and it didnt help me at all. But I know my Ferritin (Iron) is going up and im not taking any supplements so i guess that must be building up from somewhere. Im going to also need to speak to GP for their explanation on that.
As the administrators on here are aware, Hughes Syndrome/APS is an autoimmune condition, sufferers of this often have a Thyroid problem which emerges either before or after diagnosis, also Sjogrens Disease. I administrate with others the relevant forum on this platform: Sticky Blood-Hughes Syndrome Support. This is an illness frequently missed by the medical profession. In fact Professor Graham Hughes even wrote an article for TUK's magazine, I link this for you:
In a recent issue of your magazine “Harmony”, a correspondent in the Q & A section wrote, “I have been diagnosed with under-active thyroid. I still have lots of symptoms even though I take 50mcg of thyroxine a day. Can I take any supplements on top of this that might help?”
If your continuing symptoms are aches and pains, fatigue, ‘scratching’, dry eyes, migraine, memory loss, balance problems – take note.
As you know, thyroid disease, especially underactive thyroid, is recognised as an “auto-immune” disease. – and autoimmune diseases run in families. Many of these families have histories of other autoimmune disease.
Two of these conditions commonly – probably very commonly – accompany thyroid problems. These 2 conditions are Sjogren’s Syndrome and Hughes Syndrome.
Sjogren’s Syndrome. Henrich Sjogren, a Swedish eye doctor, described a condition which included dry eyes, dry mouth and rheumatic pains. Sjogren’s is now recognised as being due to an overactive immune syndrome. The clinical picture includes vaginal dryness, bladder symptoms (recurrent cystitis) and aches and pains (commonly given the unhelpful label of ‘fibromyalgia’). It is a common condition especially in women over 40.
And yes, it is commonly found accompanying a thyroid diagnosis (especially Hashimoto’s).
Hughes Syndrome: Recognised 30 years ago, this is another so-called autoimmune condition, called “sticky blood” by the media. The cumbersome medical title we gave to the syndrome 30 years ago is “Antiphospholipid syndrome” – APS – as the condition can be detected by a simple ‘antibody’ blood test).
The condition appears to increase the risk of ‘sludging’ or even clotting of the blood, leading, for example, to DVTs (vein thromboses).
Two organs appear to be especially vulnerable to “sticky” blood. Firstly, in pregnancy, the placenta. Sludging of the placental blood supply leads to poor nutrition of the foetus, to miscarriage and even to late pregnancy loss – Stillbirth.
Hughes Syndrome is now recognised as the commonest, treatable cause of recurrent miscarriage – some women having suffered a dozen or more miscarriages.
The other organ particularly affected is the brain. Perhaps the 2 commonest ‘brain’ symptoms of Hughes Syndrome are migraine – often severe and dating back to childhood, and memory loss – sometimes mild – but occasionally bad enough to lead to worries about Alzheimer’s.
Other ‘neurological’ features are pins and needles, balance and visual problems (frequently misdiagnosed as ‘multiple sclerosis’). In extreme cases, patients can suffer TIAs (transient ischaemic attacks) and stroke – indeed, one study found that 25% of young (under 45) women with stroke tested positive for Hughes Syndrome.
Of course, the impaired circulation can affect other organs – the heart (angina), the limbs (clots and “claudication” – pain the calves on walking) – the gut (“gut angina” – tummy pain after a big meal).
Recognition
Hughes Syndrome is now becoming recognised internationally (at an international conference in October, 600 clinicians and researchers met to update knowledge of the condition).
Thyroid’s fellow travellers – Important to recognise?
Both Sjogren’s Syndrome and Hughes Syndrome can and often do, respond well to treatment
Sjogren’s – in particular the fatigue and aches and pains, often respond surprisingly well to an old fashioned medicine – quinine (the agent used is Plaquenil – a safe and widely used medicine).
Hughes Syndrome usually responds well to treatment of the ‘sticky blood’ – with either baby aspirin (75mgs once a day) or with heparin (now widely used in Hughes Syndrome pregnancy), or, in more severe cases, with warfarin.
The results have been spectacular – the pregnancy success rate in Hughes Syndrome, previously less than 20%, is now over 90%.
And one of the most satisfying results is the disappearance of migraine attacks and the improvement in memory loss, seen when simple anti-clottng treatment is started.
So, Q & A lady, don’t just think Thyroid or ‘supplements’ – ask about Thyroid ‘fellow travellers’.
For further information (including the monthly ‘blog’ “Listen to the patient”, contact:
There are three blood tests to do, listed under Hughes Syndrome on the charity website, as 'main tests; ghic.world/
On the forum I administrate, I regularly ask members with Thyroid problems to join this one, the TUK forum and continue to raise the profile of the disease Hughes Syndrome/APS shaws RedApple helvella LouiseRoberts lynmynott SeasideSusie
This disease is more common than you think, please read the charity website and stay on this forum but also join ours. our next Patient's Day is March 15th in London. Members with issues like the above which you describe do best with a full Thyroid panel, B12, D, iron, folate and the three tests for Hughes Syndrome/APS otherwise known as Antiphopholipid Syndrome and also Sticky Blood.
Thank you Mary for this new information. Id never heard of this before. I watched the video below and i do have the neurologucal side of this. But I certainly though have never been aware of any problem with actual blood or the blood related issues mentioned alongside the condition.
Being new to this, i thinking surely coagulation comes part of routine blood tests. Strangely enough i had a blood test taken yesterday that the neurologist wrote coagulation (pre lumbar puncture test). I dont know whether that will be any use to me when i find out the result.
I am grateful to you for sharing the info which is interesting. Many thanks
No, sorry, unless they are looking for it they would not be doing those 3 tests, I suggest you insist upon it, and if any referrals need to be made please use our recommended specialists, on our forum they live on the right hand side of our forum under pinned posts, but I can send them to you, if needs be, and also on the charity website some from the UK and beyond. MaryF
Oh and here is Dr Scurr answering a question on his Daily Mail column, he is a staunch supporter of our charity as are other media doctors, he also attended our charity launch.
Often other family members past and present will have other autoimmune diseases including Thyroid, or have had heart attacks or strokes at a young age, or DVT's also if female multiple miscarriages or stillbirths. I also enclose some films. This disease is like a cousin of Lupus:
Im so grateful to the replies ive had and have learnt about a few new things i never heard of before.
I actually had a neurologist appt yesterday ( after pestering and complaining). He was scratching his head, he doesnt know but has changed his mind away from acephalgic-migraine.
He has a 'couple of ideas' apparently but needs EEG and lumbar puncture.
He still prescribed me a migraine drug even though he doesnt think its that- to see if it helps. I am reluctant to try it due to drowsiness but may have to give it a go, just to say i tried.
I feel grateful to have some of your suggestions up my sleeve to think about in the meantime while going along with the NHS investigations.
If you are looking at investigating Hughes Syndrome/APS and in my opinion you really should, please have a referral after the blood tests to one of our recommended Hughes Syndrome/APS assets.healthunlocked.com/c... Unfortunately Neurolgists are often most dismissive about the condition which very serious consequences, you need to test your D, B12, folate and ferritin and be aware your Thyroid activity can change over time. These are the three blood tests that your GP can do, do them at the hospital as they are time sensitive, the samples taken: Under main tests on this page: ghic.world/hughes-syndrome/
Thank you MaryF, ive also joined the sticky blood group.
Im sure its no surprise for me to say that the chance of my GP doing non-routine blood tests like these is Zero. Especially as i have no history of miscarriage, DVT or blood clots.
It will be down to me to pay privately-i expect that is common for most in UK. I will add onto the never ending list of possible blood tests to arrange.
One positive though is that i also have a Rheumatology referral in process but alas i dont think its one of those on the APS list.
I would take somebody with your to that appointment, a trusted friend, relative, neighbour, colleague etc and insist on the rheumatologist ordering those 3 tests which are cheap to order. Best of luck. MaryF
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