Recurring Mysterious Illness needs diagnosis

Hormones
1

Hello I'm new to this forum.

I have hypothyroidism for 15 years on 125mcg levo. Tsh between 0.003 and 0.08, t4 16 not sure what t3 but told normal.

I also suffer depression, anxiety, migraine and panic attacks on occasion. I take no medication for these. Im always fatigued.

As a teenager I had energy loss and had to lie down shaking.

Years later I started getting these 'attacks' in my home life on occasion anything from everyday for 3 months to 2 years between, but working it happens everday.

I get weakness in my legs, its like wearing moon boots filled with concrete, unbalanced, the more effort i put in the worse it gets. It then affects my energy, I shake, then I get confusion, dizziness, light headed, my speach becomes slurred, its like im drunk, on severe attacks i talk to myself or shout out to 'unhelpful partners' I can't control it. I then become emotional and depressed.

I saw my dr today and he said its gone on so long it must be panic attacks. But i get panic attacks and it doesn't feel like this. Im obviously frustrated after all these years so it must come across panic or depression to the gp.

I have seen endocrinologist and neurologist a couple of times but not when im having an episode. Mri and eec 9 years ago were clear.

Whats wrong with me? Are there recurring illnesses or is it my anxiety/panic?

Thanks for any advice.

2

Hello Wendolph:  I am an RN nurse and I live in USA.  In general when you have thyroid problems you can have panic attacks and depression problems.  It happens in many of people who have Hyp or Hyper Thyroid issues.  You need to see if your Minerals in your body are okay.  These are Sodium, Magnesium, potassium, ViT D,  just to name  a few....these all have to be correct in the body.  If the minerals go low, you can feel really bad and have muscle aches, headaches & energy problems, and even panic attacks and depression. 

Now I do not know how old you are, but if you are a woman, you may be having early menopause symptoms, which can be hard to go through.  Having tiredness can be part of many conditions like Lupus,Rheumatoid Arthritis .  So you can ask the doctor to test for these problems.

There are meds that can help with anxiety, and you should ask the doctor about that.  keep alog of the panic attacks, like how often it happens and what may have triggered it.  take your log with you to the Doctor's office when you see him/her.  I hope this helps.

3

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.

4

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.

5

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

6

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.

 

7

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.

8

Hello Wendolph, you really need to have the T3 & T4 tests since it shows the amount of hormone the thyroid gland produces.  It makes these 2 very important horomones and TSH is an overall level and if one is low, the doctor would not see it. It is not good to rely on just TSH level.

Did your problems start as a teen or after the childbirth? 

Vitamins can't hurt.  Always good to have your bodies minerals in good order.  Since your biggest complaint is your weakness in your legs, I would see a neurologist - a doctor for nerves and brain.  If your legs are very weak, an MRI of the brain would also be good to have.  You have many crainal nerves in the brain and maybe you have a growth in there.  I do not want to scare you, but having slurred speech is more of a Neurological issue, in my opinion.  Is it everyday?  How is your blood pressure?   I would ask for an MRI if you can. 9 years ago is ancient in time now. A lot can happen in 9 years in the body!

Did any one in your family ever suffer a stroke?  Does anyone have heart problems?  Heart problems & Strokes can be a family thing. Do you get awful headaches? Migraine type? Does light hurt your eyes?  Did you have problems when pregnant, were you dizzy or unable to speak?

Sorry if I am asking questions but as an RN, I just do that and it is helpful to know. It helps narrow things down.

Depression and Anxiety, can be both Hyper & Hypo symptoms. We have a couple of brain chemicals that need to be right, one is seritonin, and dopamine.  If the level falls and with a faulty thyroid, it can cause these chemicals to go off. The body is so complex, and everything has to be JUST RIGHT. One thing bothers another, if you know what I mean. Like a snowball rolling down a hill and getting bigger.

Write back and give me answers to the questions.  I hope I can help.  XO Shelly

 

9

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.

10

Dear Wendolph:

A lot of symptoms you state sound like a neurological problem, example would be a tumor/growth slow growing kind. Also the paralysis has to come from the brain.  It just fits with so many of the symptoms like collapsing, shaky feelings, headaches & typing mistakes, etc... Since you have a history of tumors esp. in the brain area, this should be considered paramount by your GP/Neuro doc.

Having a viral infection can cause Polyneuritis, (many nerves effected by an infection), that can also cause damage which could explain a limited paralysis in hand and legs feeling heavy & weak.  Sometimes a viral  infection leaves some areas with scar tissue and can cause problem with brain signals getting through. Since Parkinson's runs in your family, that can also cause a hard time walking, shaking, tremors of hands, collapsing, etc...

I suggest you inform your Neuro doctor and get an appointment, have him order MRI.  I know it is hard in your country to do this, but can you get on a wait list for an appointment or have GP refer you again?  Why can't you see Neuro doc a 2nd time? 

You should bring your journal and tell him/her, all symptoms you told me.

Sometimes people can have several conditions that act up after childbirth or a stressor to the body.  I do feel you need a NEW MRI to see if there is any tumor or area of the brain with damage or problems from your past viral infection.

Start with your GP, and tell him, you feel badly and the symptoms.  It is not all thyroid related, people do not get paralysis or collapse from thyroid problems.

That is Neurological and must be looked at.  Mid-life (40 -60 years old ),  is when some problems like Parkinson's start.  Michael J. FOX started having troubles in his 40's.  I do believe you have a problem but it is hard to diagnose without proper tests/imaging.

Diabetes can cause shakiness, feeling hungry, thirsty, lot's of urination, & sweating a lot.  However you could have low blood sugar at times and that could make you faint, but not any paralysis of arms/legs. I do not think you have it.

So call GP and get appt. with him/her and explain all  the past symptoms and current ones- there is something wrong here and it needs to be diagnosed. is there any appeal process in NHS for another eval by a specialist? Can you maybe use the Emergency Room  when you have an attack and symptoms flare up?  Maybe they can request a referal to Neuro doc.   I hope this helps.

11

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!

12

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

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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.

14

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

15

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.

16

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

17

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

18

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

19

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.

20

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