Reality check in worse way

I discovered this amazing site for the first time last year after hypothyroid for 24years with no problems. Six weeks ago fell,head injury,seizure caused by head injury never had a seizure before.TSH 180 on thyroxine 175mcgs then TSH 100 hours later on same day which no one can explain all help on this would be gratefully received. Thyroxine increased to 225mcgs & TSH two weeks ago 77. As I haven't had any issues with thyroid previous to this I've definitely been in denial dismissing folks saying I shouldn't be at work despite very supportive messages & advice on this forum I thought I can do this, return to work get some normality again but I have been very wrong.This week has been particularly difficult & I don't know why as TSH still high but going in the right direction. I have such achey muscles & my fingers are swollen, so fatigued & put things off daily convinced I'll do them tomorrow just doesn't work like that. Main issue is dizziness esp when I've been moving round then sit down get wave of dizziness & going from standing to lying down is awful I genuinely feel I'm going to pass out lasts abavout 10 seconds - advice anyone? My sick line for work ran out today & gp was leaving one to be collected which my son picked up,I know my gp feels I should be back to work & I knew this very true when the sick line was from tomorrow to Monday with expectation I'll resume work on tues all very bizarre. I desperately need advice what can I say so he understands how ill I really feel? My son's are at this practice so I want to stay there plus there are no spaces at other surgerys & I do like my gp who I rarely need to see. I am a strong woman normally but I am done can't take on or manage anymore..please help Yx

48 Replies

oldestnewest
  • You could write all of this down so that you will remember everything when you are at the doctors. This should be enough to show you are not yet ready When as the last time you were see ? Doctors oftentimes write things down based on their best estimates. Do you have an appointment between now and tuesday next?

  • ohm1 thanks for your advice after a night of worrying about sick line I called gp practice today & have a line for 3 weeks gp had got dates wrong which great but long night physically thinking I just can't go back to work in 4days, hadn't thought about fighting things down to have at appointments which is great advice as definitely serious brain fog going on here. Once I see my sick line I will get gp appt booked for 3 weeks time Yx

  • Hi Thyroidfairy

    I recently found this site too and I am sorry to hear about your recent health problems. It is well documented how very exhausted and ill people with thyroid problems can be. If your GP is not supportive of your exhaustion and providing long-term sicklines then that's very disappointing. You can decide how ill you feel and the doctor should support you. I changed surgery yesterday and will also move my children to my new surgery shortly. My GP was very good for 20 years but very difficult to see and often 5 weeks for an appt. the practice manager became nasty recently as i have so many ailments. Think they were fed up with my emergencies, appointments and requests for referrals and blood tests. My TSH is 4.25 and I already have painful swollen fingers and arthritis in hands and feet and I am only 50. Also breathing issues and chest pain. All fine with bloods I am told but they are all low/borderline. It seems you need to crash and be rock bottom in uk to be helped. A new Endo I am seeing soon has already said he will NOT treat me with medication before my appt. I can't imagine how ill you must feel with your very high TSH and I hope it gets better soon. Take good care of yourself and do what you feel is best. Hugs xxxx

  • I had a number of very bad chest pains,no one suggested it could have been my thyroid?I was told it was somatic?What has your GP said about your symptoms?

  • Hi dianadoors

    No thyroid never been mentioned by any medical person . How could it be as everything is normal!! I am currently anemic so that is not good either. Taking ferrous funerals and vitamin c tablets. Hope you are ok take care xx

  • Fumetate even

  • Fumerate even

  • Or Ferrous fumarate? :-) :-) :-)

    (As I have mentioned before, please don't feel the need to find all my numerous typos!)

  • These were my typos lol

  • Strange I should see your comment today, as I have been on Thyroxine for many years too. And I noticed that my tendency to fall over had increased from shortly after I started taking them. Two years after a particular nasty fall I decided to watch my step by walking very slowly, I use a cane because of severe arthritis so have support. I analyse my body when and can stop a fall if I feel slightly dizzy but just lately I have had to stop myself from falling because the sensation of dizziness has changed and now it feels like I am going to black out, so I keep still and shut my eyes until the feeling passes. I really do think you should see your doctor, copy and paste my words and take them with you as it might show that you have just cause for investigations. I shall make an appointment with my doctor and if you don't mind copy and paste your words to take to her. It takes three weeks here to get an appointment to see my own doctor, but can see a duty doctor within 24 hours. Good luck and I hope you get sorted out. all the best Linda

  • lindylouisa66 thanks for your advice & please share with gp..I'm guessing we have more in common as I am 50 & email address had 66 in it just ignore that comment if your 21😉like you on thyroxine many years & started falling last couple of years I was never clumsy but something had changed had brain m r .I & that was normal so of course medics suggested stress!!! this year I have fractured my cheek bone & when I fell resulting in head injury I fell backwards & back of skull hit concrete 1st knocked out had a seizure & into hosp had head stitched up & there's no way you can physically fall backwards with no attempt to save yourself & it's awful that I was happy this head injury happened so physical evidence these falls not stress. My gp 6weeks ago said the extreme dizziness(poor you it's an awful feeling to have) was exacerbated by weird thyroid readings. Hope you get on ok at doctors when you finally get an appointment, good luck Yx

  • I wonder if the head injury has caused a thyroid storm?

    I had a car accident in Feb which started a huge one for me. Like you vertigo was terrible and in the end I had to go for scans but they put it down to BPPV (an ear thing)

    I recently have fallen off my horse and it's started another one.

    Have you had your thyroid antibodies tested? I'm wondering if you could have Hashimoto thyroditis.

    As for your THS readings, the admin staff will comment and advise I'm sure.

  • I think the term 'thyroid storm' is used to describe people who have a very overactive thyroid, not a very underactive one. However it is well established that any injury to the neck can precipitate thyroid problems.

  • No mine is very underactive but I definitely get storms where I feel horrendous and goitre enlarges.

  • Hi there Kate!

    Thyroid Storm is actually short for "thyrotoxic storm," or "hyperthyroid crisis." It is caused by an overproduction of thyroid hormones, and is somewhat rare. If left untreated, thyroid storm is fatal. Even with treatment, it is a critical illness and carries with it a high death rate.

    Goiter can be experienced whether hypo, hyper, or in a clinically euthyroid state; perhaps the reason for confusion.

    Hope this helps! Hugs!

    patient.info/doctor/hyperth...

    medicinenet.com/thyroid_sto...

    patient.info/doctor/hyperth...

  • Heard so many people mention storms that I just assumed that when a flare up of symptoms was really bad it must be a storm. Guess not! Thanks for info 😀

  • No worries, sweet Kate. You're very welcome.

    That's what I love about this site... we can get together here and learn as we go and learn from one another. I've learned that we need each other in order to get back to the good health we all deserve. So much truth in the saying: Knowledge is power!

    Hugs to you!!

  • Thyroidfairy, have you had your B12 tested? Low B12 is often responsible for dizziness. And hypos often have low nutrients. So, ask your doctor to test for vit D, vit B12, folate and ferritin. :)

  • greygoose I have injections Vb12 every 3 months & recent blood check for this showed I was right in the middle of normal range. some bloggers have said there is a VitB12 spray you can but gives the counter so plan get some anything to help

  • greygoose extreme brain fog that post made no sense I plan on getting the vitb12 spray which you can buy over the counter anything to try that might help...that should make more sense

  • That makes sense. lol So, it could be your sub-optimal B12 that is causing the dizziness.

  • What it sub optimal B12?

    Thanks

  • Well, not quite optimal.

  • greygoose your not optimal made me smile😊gp only checked vitb12 couple months ago due weird symptoms but he stressed vitb12 injections are for life so highly unlikely be checked again. Another weird symptom today finger tips had no fee!ing I noticed it when texting has been intermittent all day..is there a link of peripheral neuropathy with high TSH?

  • Well, it's not a direct link. TSH is normally high when FT3 is low. And low T3 means low stomach acid, which means difficulty in absorbing nutrients, including B12. And low B12 causes peripheral neuropathy.

    However, you have Pernicious Anemia, don't you? That isn't anything to do with TSH, but it's autoimmune, and autoimmune diseases usually hunt in packs. So, if you have PA, you probably have Hash's, too.

    Although, one doctor did tell me that some peripheral neuropathy was caused by low T3 (not his words exactly, but that's what he meant, even if he didn't know it!) because nerve endings die off if they don't have enough 'thyroid hormone'.

    I don't know how true that is, I've never seen it mentioned elsewhere, and, as he was wrong about just about everything else, he could have been wrong abut that, too.

    But your doctor is right that the B12 injections are for life. It's just that on the NHS, you don't get as many injections as you should, so your B12 is often low for long periods between shots. A lot of people buy their own and self-inject during the gap, so that their level stays higher for longer. But the spray could work for you.

  • Oh that's obvious looking at it! Ha ha thought may be more involved. Most likely why I'm still dizzy too then. Thanks

  • thyroidfairy - perhaps the 3-monthly jabs are not sufficient and you suffer with ataxia. If you have neurological symptoms you should have the injections more often. This is laid down in the Guidelines which your GP should have read :-)

    Having a blood test for B12 whilst receiving injections is not a good idea as your results will be skewed and you run the risk of having your injections stopped. You need the B12 to be around a 1000 so having a mid-range result suggests you are not holding onto the B12 in the injection. Maybe you should add in a B Complex containing Folic Acid or Folate. B12 works in the body with Folate so both are important.

    I have read that B12 sprays can work well for some.

  • Marz gp checked vitb12 levels about 8weeks ago & told im in normal range don't have the numbers sorry but was informed this would not be checked again as once you start injections that's you for life..do you know if peripheral neuropathy can become an issue? It's intermittent at the moment..is there anything i can do to sort this symptom from progressing!Yx

  • PN is a neurological condition which indicates you need your injections on a more regular basis until symptoms subside. Did you have loading doses - rvery other day jabs for two weeks ??

    Click onto my name and scroll through my posts - posted a dsy or so ago about B12 - the link will take you to thr GUIDELINES which you can show your GP.

    Are you tsking a B Complex as well. B12 needs Folate to work well. Why not pop over to the Pernicious Anarmia Society forum here on HU. So much information and help there.

  • If you have had a head injury you could have post concussion syndrome this will cause fatigue and dizziness and many other symptoms. Two years ago I concussed myself I hit my head on the car boot door painful and seemed insignificant but hospitalised me, the symptoms went on for weeks until a lovely doctor told me about PCS I read up about it and my symptoms fitted it took me well over 6 months to recover from this. Rest is the best thing to recover from a head injury and do not push yourself allow your brain to heal.

  • When you had the head injury, did you damage the pituitary gland? This can cause a different kind of hypothyroidism (can't remember if it's central or secondary?) and needs dealing with in a different way.

  • mistydog I had CT head when in hosp with head injury & was told totally normal...I was not aware that pituitary can cause different type of hypothyroidism I thought pituitary only wonky & affect thyroid if pituitary tumor I'll look it up & check it out so thank you Yx

  • after any head injury its utterly vital that you completely rest everything inc your brain otherwise lifelong hell results

  • Why do you say lifelong hell?

    I was concussed for about 20 minutes 4 years ago and have terrible head pains which I refuse to call headaches although they can sometimes turn into them.

  • i think you need to understand the deoth of problems even mild head trauma causes

    my 18yr old grandaughter was hit on the head by a section of wood over 3 years ago she suffers horrendous stabbing pains throughout the day which wake her at night plus chronic migraine 24/7

    she has post traumatic chronic migraine which no treatment has touched

    and the top headachec consultant in the world said 80% recover in 5 yrs 20% do not

    it very much looks like she is in the 20% and she was not even concussed

    Headline also say she has this for life now ...its wrecked what should have been a career in Law and made life for a brilliant student pure hell

    she spent 14 solid weeks earlier this year in status migraine in a totally dark silent room on 3 different anti nausea meds triggered by an anti migraine med

    Hence she cannot take any meds and even the hell of 5 days of DHE iv infusion has not stopped the problems

    Its almost impossible to study with the dual headaches she is suffering

  • I am sorry to hear of your granddaughter's problems.I do know the horrendous pains you speak of.I started taking CBD oil about 6 months ago and have found some relief!No one seems to be able to diagnose my head pains?

  • reallyfedup123 Thank you for sharing your poor granddaughters story, how your life can change in an instant I don't know anything about chronic migraine I was wondering if this is something that will improve as she gets older or not, all sounds truly horrendous. It was the back of my head hit concrete first & I have had headaches but on right side head only at the front, sharp stabbing pain but only lasts maximum a minute so no point taking pills, so you think this could be due head injury & concussion? Some tips that may make your granddaughters life a bit & if your aware of these or not relevant just ignore. My son aged 20 is now at palliative stage of his illness he has rare auto immune disorder & non-curable muscle wasting disease &only reason I'm sharing this is he is now 24/7 bedbound with extreme photo sensitivity & disorder called 'hyperacusis' he spends his days in a darkened room wearing darkened glasses & he has eae defenders for sensitivity to noise. When he did attend any appointments the darkened glasses plus ear defenders really got him to the appointment & back.maybe something you've already considered, have medics tried syringe driver with pain & nausea meds? These drugs tend to have more affect if person received steady dose over 24hours...just couple suggestions..hope all goes well Yx

  • Perhaps your symptoms are due to your fall?

  • mistydog dianadoors I was about to ask the same question..why lifelong hell?

  • Some thoughts.

    You need to document (write) EVERY symptom for the doc. You need to remind the doc that your brain cannot possibly function well with TSH that high. (I remember that my brain wouldn't function when my TSH was "only" 8.) If the doc has never been hypothyroid, then he/she does not understand how serious hypothyroid brain fog is. There are many other hypothyroid symptoms, and another one of them is headache.

    Attempting to function while you are dizzy is likely to produce another fall and injury.

    Your sons or whomever need to find out if there is a standard procedure for temporary disability determination. Employers will take advantage of you unless you make your situation clear by formally requesting at least temporary disability.

    Your TSH is high because your body, having had a shock, is not converting T4->T3 efficiently. You risk thyroxine toxicity: the T4 full-replacement value of 1.7mcg/kg body weight means your 225mcg dose is about right for a person who weighs 132kg, or 290 lbs. If you do not weigh that much, then supporting your body by reducing T4, and adding T3, will help raise your metabolism to help your body repair. Nutritional supplementation is also highly advisable esp. when you feel so bad that you are not eating.

    Head injury increases your risk for cerebral embolism. Has the doc not ordered imaging to see what is going on in your head?

  • Interesting point Eddie83 that your body reduces conversion of T4 to T3 after a trauma. That explains a lot. I was interested in this post because I fell off my bike three days ago and even though I "got back on the horse" I spent the rest of the day feeling like I had just been kicked by one. I had landed on every corner possible and could not do anything else that day. I went to bed at 8:30pm and slept until 10:00am the following morning. But that was it! Amazingly, the following day I was normal again although I did take a bit extra T3 with my NDT. I was fascinated with the whole process. So yes, rest did it for me very evidently.

  • I suspect that a shock induces biochemical chaos, and that is likely to reduce T4->T3 conversion. But I don't know that for a fact! There is the possibility here that thyroidfairy has been in a low-T3 state for a long time, and accident shock simply magnified her need for T3 because it was already low.

  • Yep, makes sense.

  • I learn something new every time I come on this site. I was hit by a car 2 years ago and went headlong into a stone wall. I was out for about 10 minutes and suffered a broken jaw, knocked out several teeth and split lips and chin. My face was like a balloon. I've been hypothyroid for 22 years, but about a year after this I was showing signs of being overmedicated, I was seeing a psychiatrist, and she recommended retesting my thyroid and my results were unbelievable. I'd gone from being stable on 175mcg of Levothyroxine for 20 years to a TSH of 10! It never crossed my mind that it could have been caused by the head trauma. I've been struggling ever since to get back to normal.

    I hope you get things under control soon, and get the treatment you need.

  • Sorry, a TSH of 100, not 10!

  • Hi jackiez

    What a shame about your accident hope your levels are getting better now. Take care xx

  • Hello

    You are having a hellish time. I think there are 2 things going on. The head injury itself could make you feel very ill. A friend fell and hit her head hard in the winter and still isnt well enough to feel normal. She can't even cope with a phone call. Thyroid issues on top. Rest. Hydrate. A good liquid trace mineral solution. (Stress of any kind gobbles up nutrients) Antioxidants like high Vit C often. Magnesium Citrate. B complex. All basic care.

  • Naturopath or a good Alexander Technique teacher could help realignment, and that can help all kinds of things heal. If you live near Bristol or Winchester I can recommend a very good one.

You may also like...