recurring Mysterious Illness needs diagnosis

Thank you for your reply shellyC19.

I live in the uk and im 40 single with 3 children the youngest is 2 so its quite hard at the mo. I had a coil put in a year ago but had no problems with it.

I get a 10 minute appointment with my gp and have seen them alot the past year so I'm sure I come across as a hypochondriac and am obviously anxious when trying to explain everything. I requested a thyroid test the other day as my fatigue and coldness have gotten incredibly bad.

In December I woke up with a stiff knee and in April I pulled a muscle in my back and could hardly move for a week. I've seen pysio a few times over the past month my back has eased and my knee is getting better but pysio says not cartilage just weak muscles. I couldn't lift my left leg when lying down.

Yesterday my gp tested follow the finger and arm strength, i was shaky but did it well enough to satisfy him. I've never been good at sports, but i did used to work in a warehouse so i used to be strong. I couldn't lift a pan the other day and struggle to pick up my 2 year old.

I don't eat as healthy as i should as preparing a meal uses so much energy so with my knee, back and low energy its getting worse. I used to get up in the morning and not sit down til 4 as that was my limit. But now i struggle all day. I moved house in February and was packing in November but im so weak compared to then.

I'm hoping my thyroid test will show something and then I can pick myself up a little more.

Also when I worked 9 years ago my hand seased into a clenched position for 2 months with shooting pains up my arm, i was tested for arthritis, every nurse and dr in the hospital said i had it. When i phoned for my blood test result they said it was negative as I'm the wrong blood type (O+) my hand slowly got better so by the time i saw the specialist months later it was fine.

I should point out that my gp won't test me again as I get no pains in my knee.

Hello Wendolph:  Thyroid issues can come after childbirth, some of the main symptoms of Hypo (Low) thyroid, are:

1. Feeling Cold despite the temp. outside

2. Gaining Weight/ Low Metabolism

3. Muscle pains/aches/Muscle atrophy

4. Low energy

5. Foggy Brain and confused/unable to do a task well.

There are blood tests that can help diagnose this. TSH level and T3 & T4 levels.  Many people get this.  You need to see your GP or an Endocrinologist who knows about gland problems.  They have pills for the missing horomones of T 3 & T 4.  These are easy tests to do, and in a few days you could know. Did he order the level?  If not can you appeal and ask for it again?

Many People after childbirth have low iron levels and a mineral panel should also be done. This is also blood work.   many women also lose Vit D in the blood. Sometimes it can be from our body not being able to convert Sunlight to D.  Sometimes it is diet.  Take a very good multi-vit or some Vit D.  It has an effect on muscle strength/good bones/ and keeping the body strong. if you take a good muti-vitamin you need magnesium also in your body, and that works with muscles and strength. Look at the label on the bottle and buy the best one you can afford.

Some doc's just don't listen, they are in a hurry. Is it possible to get a better GP there?  Keep pushing for the thyroid test, but in the meantime get a good muti-vitamin and take 1 a day.  Arthritis can happen if you thyroid is low.  I would say take Motrin or Naproxsyn (Aleve) if you have bad pain from it.  No cure for Arthritis yet.  Keep Vit D levels in body good and you will see better bone health.

Let us know how your test went?  Keep in touch.

 

Thanks ShellyC19 all good advice.

Ive looked into underactive thyroid problems and i get every single symptom. At the moment fatigue, weakness and my walking are the worst.

My results came back today Tsh 1.2 normal, kidney function, iron full blood count, liver function, glucose all normal. But no test for t4 or t3! Even though I asked!

Im on 125mcg at the moment and my levels are tested every 6 months to a year aand more often if i complain. Always normal. If its normal why have I always suffer the symptoms?

Last year a different gp sent me to a neurologist when I couldn't even get upstairs with weakness and he thought silent migraine and anxiety but never took it further. My gp looked at her computer confused and asked if I had taken multivitamins and said are you sure when i said no. I should have asked why. Shes left now.

Changing dr is not easy and you get seen for 5-10 minutes.

Im beginning to think it is a defiency or maybe too much of something my body cannot control.

But since my gp didn't do the test i asked for im afraid of asking for more.

I'll ask my pysio about my legs when I see her though she said no cartilage damage she can detect. I'll keep up with my stretches and try eat better and take multivitamin and hope I improve.

Hi - I too live in the US & considered a "senior citizen".  My friend feels much younger than her yrs she says & I feel like 100! 

I am hypthroid & my # was 10.  My thyroid med was upped to 125mcg.  That was 10days ago.  How long will it take to be "normal". My understanding is it could take weeks.  I took 100mcg before it was changed.

I wonder if I should ask to have it reduced.  I feel jittery & nervous & my legs ache.  I also have been dealing with an inner ear issue that ranges from dizzy to a spacey feeling.  Wonder if it is connected & I have seen 4 different docs for that issue.

I believe I will start vistibular therapy again.  Hope you have some input.

Marie

Hello Marie:

I would say since your dose of thyroid med was increased recently it can take  4 to 8 weeks before symptoms change.  The body takes a while to absorb it and build a proper level.  Sadly, it is slow and takes a while to see the effects or symptoms reduced.  If you find signs of HYPER (too much), then call your doctor to get it reduced.  It is normal to experience some jitters and nervous feelings while the medication is making a new blood level.  It should taper off as your body adjusts to the increase.

Make sure you have your Vit D and mineral levels checked as in many of us with thyroid disease we are low in that and it can lead to severe muscle aches and pains, headaches and feeling awful in general. In the meantime,  they have very good multi-vitamins in the pharmacies today that have Vit D in them, so try that and see if it helps  It helps to make the thyroid medication be more effective since you need your B vitamins and iron levels in good shape.

As to your inner ear problem:  This is something that can cause you to be dizzy (vertigo), and spacey as you say.  There are meds for it, "Antivert"  and others that your doctor can prescribe for it.  It does not sound like your thyroid is doing this, it is related to your inner ear which controls balance in the body.  Go to the therapist for that problem.  They can help you control it.  Also get up from a seated or after lying down, slowly.  Do not jump right up!

I hope this helps.  Be well,  Shelly

 

Shelly thank you so much for the information.  I should pay the people on this site instead of the doctors..  I was told it would take "awhile" for the meds to kick in but I had no idea it would be that long a wait.  Oh well.  And no one mentioned any connection between dizziness & thyroid.  I have no idea how long my thyroid was not normal but the dizziness started 9 mos ago.  Some days are better than others.

Hope you all are having good days.

 

I read you reply again & you said you didn't think there was a connection between thyroid & the dizzies.  That makes sense.  In our area there are alot of people complaining about this issue. (dizziness) hope in's not germ warfare

Hello Marie:

I am just glad to help, and it is good to have a support group and people who understand what you feel. 

Having Vertigo, (dizziness), can come from the inner ear and even from enviromental conditions like loud sounds in the area and chemicals in our water these days.  Also a virus can be the cause, or infection going around that settles in the middle ear.  You can get meds for it, and it will calm it down, but do have it looked at by your doctor as soon as you can.  Walk slow and get up slow to reduce any dizzy spells. 

I hope this helps.  Shelly

Hi Shelly thanks for all your help. I did ask for t3 and t4 im afraid to ask again. I think my gp must think im a hypochondriac and I can't afford private.

Ive been looking through my dairies.

History:

Teenage years approx 1989 Migraines on occasion, energy loss craving sugar shaking lying down. Cramps Diagnosed growing pains

1997 randomly ill, legs gave in on me, collapsed, shaking hands typing mistakes at work Diagnosed viral infection. 2 months later molar pregnancy.

1999 1st child and diagnosed underactive thyroid

2005 - 2008 started working and taking daughter to school, every day weak legs and light-headedness on walk in. During work would weaken and shake. My hand seazed up for months. Back pain.

2007 mri & eec normal

2008 2nd child spd endocrinologist

End of

2010 neurologist suggested acute period paralysis suggested never tested

Dec 2012 3rd child severe spd pgp and oedema

September-december 2013 leg weakness couldn't get upstairs neurologist diagnosed possible anxiety and silent migraine

December 2014 knee stiff, cant straighten leg or walk downstairs, cant lift left leg, foot cramps

March 2015 pulled muscle in back

Knee and back almost better now past week lightheaded weakness and difficulty walking.

Diabetes in family, grandad in wheelchair with arthritis, aunt had knee replacement, 2 brain tumours different sides of family, parkinsons and my mum had depression and 5 other things I don't remember to do with mental health.

My gp did general neurology tests so because I was referred last year wont refer me again, and they generally are the ones to put you in for mri etc.

I don't get the slurring often its very rare. Sometimes it feels like im drunk or a hypo or like when you stand up to quick. I think the energy i use trying to walk gives me the light-headedness. And in turn the frustration brings on the anxiety.

I get no pain. I'm lucky. My 'thing' isn't every day unless im working.

Hello I asked for my t4 and t3 and because my tsh is normal its not standard and he wont do it. I did ask for a vitamin check and my vitamin D is 7! Seeing gp on Friday. I have been feeling better this week even lifted my leg! I strained it the night before trying to lift it and left the excersizes for a day then up goes my leg!

Hello Wendolph, good to hear from you.  Well I have learned that in the UK you need an Endocrinologist to order the T3 & T4 levels.  In USA(my country) a GP can order it.  If youTSH is normal that is good news, but if you have bad symptoms, call GP again and ask for a referal. 

Your Vit D level is low, and I don't know if you had a mineral panel done, that is Vit . K, sodium, magnesium, and B vitamin group.  Most GP's can order this.  As  we age Vit D goes low, as we can't make it through diet and Sunlight. Get a very good D supplement or a good Multi-Vitamin.  Some stores that sell vitamins only or a good pharmacy can help you find a good one.  They make different ones, some may have more D than others, so buy the best you can afford. Vit D helps muscles be strong and bones to stay strong.  Whenit is low, pain in the muscles is seen and even atrophy, (shriking of muscle tissue).  Do mild exercises, but do not strain yourself.  Let me know how it goes after you see GP.  i hope this helps.XO Shelly

Hiya Shelly, dr gave me 1000iu equivalent to 25ug vit D3 Desunin tablets and said have another blood test in a month. I asked if the tablets will improve my muscle strength and he said "i don't know, try it and see." I mentioned how the other gp asked if i was taking multivitamins and said don't, he said "well as shes left now im not sure what she meant."

the suns been out this week so im in the garden and walked around town yesterday by the end of the day with back and knee pain not much pain though about a 3 or 4 out of ten. I've stopped limping and am now waddling. I have to keep stopping myself to walk normal for a minute. My good knee now cracks and my stiff knee doesn't crack at all.I'm seeing pysio Tuesday.

Hello Wendolph:  The Vit D will help.  Give it a chance to take effect. I would say a mutivitamin can't hurt but I am not your Doctor.  Get some sunlight will help also. When you have low Vit D, your bones and muscles will hurt and it will lead to brittle bone syndrome/osetoporosis.  All minerals in the body need to be correct.  I hope this helps -please keep in touch. XO Shelly

Hello Shelly,

I saw physio today and she confirmed its weak thigh muscles and the muscle that supports the knee cap, so my knee cap is sliding over my bone rather than its spot. She warned this could turn into arthritis and keep up with the excersizes. Hopefully the vitD will help.

It's hard though I struggle up and down the stairs and when holding my 2 year olds hand not the easiest. Getting up from the floor I'm using my arms and standing and walking make me ache so bad and now i get this terrible painful pins and needles /numbness in my feet.

Soldier on keep the exercise up and hope for improvement and thank goodness its not worse.

Hello Wendolph:  

I tore out my ACL ligament in my Right knee in 2005 and I know what the muscles your physio is talking about.  The Quad muscles support your knee and alignment.  I did a bunch of exercises and the foot press machine and it does make them stronger and help.  Also keeping your mineral levels in normal ranges will help.   Take or get a mutlivitamin as you need iron, magnesium, potassium etc...

I suggest you buy a support Knee brace at your local pharmacy or sports shop.  It will help when you have to walk a lot of go up the stairs.  Ice is good on pain and it decreases pain and inflammation in the joints which you could use. 

Do you hear a click in your knee area?  When going up a step - try and use the better leg to start.  When going down a step you want to hold on to a rail and start with your weaker one.

I hope this helps, I have been there, so I know.  Shelly

Thanks for the support and advice Shelly.

I started taking a good multivitamin last week and im feeling much better. I hold onto the hand rail and sometimes pull myself on it.

My left knee was the stiff knee and all my weight was on my right knee. So last week my right knee has joined in. They have light grinding noise walking upstairs. My left knee clicks if i try walk downstairs so i take one step at a time since December and now my right knee crunches too. When standing up from a chair both knees crack sometimes to the point i shout. Getting up from the floor is enormous effort.

After standing or walking my knees, hips, back and toes hurt. I get neck ache like my head is too heavy and it pops sometimes at the end of the day.

Im a walking drs nightmare with my symptoms lol. At least the light-headedness has gone for now. Xx

Hello Wendolph: 

Some noises your knee makes tell the story.  There is a cartilage that gets worn and it looks like "cotton candy or spun sugar", It looks pretty on an arthroscopy, but in life it causes pain.  They can do a clean out via an arthroscopy.  What it means is the starting of arthritis which happens to most of us as we age.  Wearing a brace will support the knee joint and reduce pressure on the cartilage and meniscus in the knee.

If you don't want to buy a knee brace use an ace wrap above and around your knee.  Ice it after you do walking and steps or an activity.   For stiffness try a muscle rub and if you are able taken Aleve or Naproxsyn. They work better on muscle/Arthritis pain.  There are prescription meds for this, but you would need to see an orthopedic doc.

Also note worth telling your doctor, does anyone else in your family have Arthritis ?  It does run in families.  All joints can get it, so if you have it in the knee joint, you can have it in your hip etc...

Keep me updated - I know how it feels. XO Shelly

Hello Shelly I thought I'd update you.

The vitD and multivitamins are working I feel like I am alive! I am still slow walking especially up hill I can hardly do it . My knees are doing much better too, they ache sometimes and feel unstable and going down stairs is still tricky on my right knee, still grinding but I can move. Infact my hips hurt just as much now, i had a rheumatoid and other things blood test which all came back satisfactory which was a relief as at the time my feet and hands were tingling like hell in the morning and when I stood for too long even my knuckles were red.

How I feel compared to a month ago is amazing.

I had a weekend away with a 2 hour drive which hurt my hips more than my knees, I was fine after but a couple of hours later i remembered i hadn't eaten and started getting my weakness, it came on quick getting shaking and distant, i went for a lie down and just lay on the bed for a couple of hours unable to even move more motivation not paralysed couldn't speak or raise my arms.... I ate after and it happened the next day too.

I thought the vitamin supplements had cured me I've been fine about a month. But this was bad. Maybe tiredness and /or not eating are my trigger but surely it doesn't affect most people this way?

Anyway on the whole I'm much better and improving.

Hello Wendolph:

Glad to hear that the vitamins are helping. You most likely were low on a bunch of minerals!  Make sure you eat , because low blood sugar can make you feel shaky, dizziness, give you a headache, cause you to faint.  Sometimes the body eats up stored Fat and muscle tissue if you don't eat. Please try and eat as it will help the vitamins work better.

If you can't eat a good meal, then grab a Power Bar (runner's use it) or some kind of granola breakfast bar.  It is better than nothing in your tummy....many health food stores may have a good one also.  Keeping yourself hydrated by drinking water also helps. 

You will need to maybe carry a power bar in your purse or car for moments you are on the run doing things.

Do you have any allergies?  Sometimes an allergy can knock you down and make you feel paralyzed?  Maybe you could have an allergy to something you ate and try foods one at a time and see if anything zaps you like it did. 

Wear a brace on your bad knee to help support the tasks you need to do.  Even an ace wrap will help.

I am glad you had some improvement now we have to build on that.  Keep me posted.  Be well,  Shelly

Hello Shelly, I do usually eat normally, especially as I noticed it happens when I haven't eaten even for a few hours. I had multivitamins in the morning and coffee, crisps and some sweets in the car to keep me going on the long drive. I drive often so don't usually get ill after. As usual i will keep an eye on it. The next day i was eating normally but didn't become a lying down zombie, thats rare it get that bad. I can only compare it to having a hypo as it feels like my dad looks when he's having one. Years ago i was tested for acute hypoglycaemia but glucose and fasting tests have always been satisfactory. I tested myself using a home kit and when having an attack my blood sugar was between 2 and 8. But yes im thinking tiredness as I get insomnia and have children and something to do with food. Years ago when I did weight watchers i got ill alot. So small portion but eating healthy still made it happen. When I worked every day it happened so again tiredness and stress.

But as its irregular the drs and me have never found the cause as its so random. I'll spend a week doing same thing and it will happen twice so why not the other days? At least its rare now.

I have been wearing a knee brace and it really is helping. 😃

Hello Wendolph:

Normal blood sugar should be between 80 to 120 mg/dl.  The number on the machine should be somewhere between 80 -120. You can test yourself 12 hours after your LAST meal, as a fasting. 

You may have intermittent HYPOGLYCEMIA attacks, and maybe if you can get a meter (some companies will mail you one ) or borrow or buy  one, you can test at different times in a day over a few days.  Since it seems so intermittent, it would be hard for a doctor to catch it unless you had the attack right when blood was being drawn, and that is unlikely.

Hypoglycemia can put you down like you have been experiencing.  Sometimes it can happen more after a pregnancy or stressful event.  Try to keep your blood sugar level up and eat six small meals or 3 regular meals and 3 snack items or fruit.  See if trying to keeping your blood sugar level up, keeps these attacks down. You can buy a ready Glucose pack for Hypoglycemia attacks that stores sell for people with Diabetes.  try playing around with your meals and see if it helps or worsen's anything.  Avoid any Fad diets, and any dieting at this time.

As to sleep, can you rest when the kids have naps?   If you get insomnia this will cause problems with zombie like episodes.  The body needs it's rest at night and if sleep deprived you will feel awful and can collapse from that.  It will cause other problems with your immune system, brain, over long periods of time. I normally don't like any sleeping pills, but can you take say a Benadryl as it can make you sleepy and give you rest.  Is it very often your insomnia? 

I think both poor sleep and a tendency to go low on your blood sugar may be causing the Zombie like feelings/episodes you have. 

If you can log down what time of day it happens and how many times a week, you may be able to catch it and be aware of it.  It would show when it could happen and it would help tell the doctor as it would be a pattern to it. 

Keep me posted and you can PM me or reply here,  Shelly

Hi Shelly, that was really helpful. I think the testing machines in the UK are different but I need a new one as I got rid of the other one. My dads insulin relys on making it around 10.

I tried diets like nutrition shakes and 3 meals, lots of fruit but i put on weight. Small meals work for me. I'm currently 12 stone 5ft3. So yes overweight but I've lost a stone since March. Thats the heaviest ive ever been before I had my children i was 8 stone then up and down between 10 and 11.

My ketone is always the highest colour on those urine strips, always. My insomnia has been all my life, I could probably count on my fingers the amount of times ive actually slept through without waking at least once to go to the toilet. In a weird way im used to it, it has been since my teenage years and worse since having the kids. My eldest is 16 she hardly slept and my youngest is 2&1/2 im single so no help at night, luckily once my little ones do get to sleep they sleep through mostly. . I do get fatigued. My children don't nap, sometimes im in bed by 9pm but I don't get to sleep so i choose to stay up later til im more tired. 11 is my usual bedtime I wake at 7 am I don't nap but at times do fall asleep on the sofa. I couldn't even sit down a couple of months ago without falling asleep which is when I discovered the low vitD.

I try record it but its rarer these days and sometimes I work hard and im fine, sometimes I do normal stuff and woooooo.

This morning I had it walking back from school, lightheaded, legs unstable, bit disconnected. I had a reasonable amount of sleep and breakfast. I wasn't paniked, i could think clearly. It only lasted 10 minutes thoygh. No reason for it to happen.

I'll definitely be buying a new blood test kit though.

Hello Wendolph:

Yes, get a blood glucose machine and I keep forgeting that the meter numbers will be different than the ones here.  You will need to test at different times and esp. when you have an attack.

Don't worry about the weight right now, let's try and keep it simple and eat small meals around 6 times a day.  If attacks slow down, then that will be proof positive and helpful to know.  Try and record when  you can a small note about the time of day, and symptoms experienced.  The 10 min. attack, seems it was not as long as before.

Yes, low Vit D, will give you muscle aches/pains, head aches, sometimes very severe. It would lead to brittle bone disease, feeling awful and brain foggy too. It can also lead to tooth loss.  We lose the ability as we age to absorb the sunlight and make Vit D.  I am on it also, as my Vit D was low. 

Oh, I see you have a teenager and a toddler, that is a busy life. LOL.  Try and get as much rest as you can.  I think since your rest is interrupted and that breaks the Quality of your sleep.   Which of course means you have poorer sleep.   You may want to ask your doctor to see if you need a sleep study.  They can tell from a sleep study if you experience  sleep apnea, and low REM sleep/deep sleep.   They say if you snore it can lead to apnea, and that can lead to High Blood pressure and a myriad of other problems.

Do your blood glucose testing and let's see if it changes a lot during the day.  Keep me posted on how it is going.

Be well, Shelly

Hiya Shelly.

Since you suggested hypoglycaemia and #snsso suggested hyperglycaemia I have been checking my blood sugar levels.

Im now convinced it is a form of this but still need to see my gp about it. Waking levels are between 4.6 and 5.3 my average blood sugar level is 5.3(approx 96) throughout the day. As soon as my levels get lower than 4.6 (82) i start feeling off. 1 hour after eating my average level is 8.4-9.7 (154 up to 174).most of these levels I've read aren't too abnormal. But weird i feel ill at 4.6 and 4 is considered starting to get low.

Then the other day I had an actual attack. I'd been out with friends walking around all day took blood sugar before drive home as i was feeling off 4.2 (76) i ate a bag of sweets on the way home then some noodles. Felt tired but better. Then boom 3 hours later my head went lightheaded i felt sick confused etc blood 3.3 (60) i then shoved half a packet of choc biscuits in my face and sugary tea blood up to 7.3 (132)

Today not felt brilliant.woke 4.6 (82)got kids breakfast upto (100)5.6 before breakfast 8.8(160) after. 4 hours later had a mild attack 4.4 (80)then after sausage potatoes bread and bbq sauce 10.8 ( 194)

Possibly reactive hypoglycaemia? What do you think?

Up to now I'd only tested morning, up to 2 hours after breakfast and dinner. And only the one bad attack the past few weeks. My lowest and highest level have been this week 3.3-10.8

To me it looks like my blood sugar is all over the place.

I'm going to put this in a new discussion to see if other hypoglycaemics have this.

Hello Wendolph:

It seems like you have a back and forth struggle with your blood sugar levels.   Normally after you eat, blood sugar will spike  with in a hour and then go down to a normal level.  In some people, they have the hypoglycemia attacks even before a meal or between a meal or with any exercise. 

You seem to be low a lot more than outright high.  I wonder if you are making too much insulin in your body, and it is eating up your stored glucose and when you walked a lot it burned  some of the glucose you had stored.  The body has to be just right, not too high or too low. 

Keep taking your blood glucose levels, and if you can log it, and show it to your doctor.  It seems like you tend to get more Hypoglycemic than Hyper.  Good idea to place it on the Diabetes forum, I am sure another person has this.  I think this is a problem you are having and why you feel so bad.  Thanks for the update.  Shelly

 

I am new to this forum and have just seen your reply so hope it is not too late to send this . I was wondering if it is normal/usual to have headaches due to a low blood sugar?

Cindy

I get headaches similar to a hangover

Yes its normal, and I get shaky, and balance is poor