Weakness when standing still

[Dramlouie]

When I have to stand still I find it difficult to stand upright. I just feel weak and need to sit down. But I am fine walking although it takes me a few minutes to get up to speed at the start. I also find it difficult to stop afterwards and feel the need to keep going. My TSH is 1.37 and T4 is 12. The doctor won't test for anything else as says in normal range. On 25mcg levo. I have a deep voice some days. Any ideas would be appreciated. I do have low bp, resting heart beat of 50 and temp of 36.4.

[atwitssend]

Is you blood pressure normal ? Have you been tested for celiac disease ?

[Hennerton]

25mcg is just a starter dose of Levo. Your doctor needs to increase to 50, with a view to further increases until you feel well. I am sure if you had a free T3 test, which they rarely do, you would find yours would be below or at the bottom of the range. Could you change your doctor to a different one in the practice? Yours clearly knows nothing about hypo treatment and is simply keeping you unwell.

[Stephanie70]

Have you had your adrenals checked? You get tired, low blood pressure, cant handle stress?! had this and was years ago and was in bed for 6 months on and off until they found out i dont make enough cortisol on my own so i had to take hyfrocortisone but only low dose, feel much better now and im working again, i think your not taking enough thyroid hormones?! Maybe find a doctor who will help you? Hope you feel better soon

[marram]

It does sound as if you are stull under-medicated, but really you need to check iron, ferritin, folate, vitamin B12, Vitamin D.

Having said that, it would be good to have the lab's ranges for the tests you have had, because quite honestly in most labs that T4 is not very high.

Dizziness is not at all unusual amongst Hypothyroid patients who are not adequately treated.

You have a lot of hypo symptoms and that TSH really is not very helpful if, for example, your pituitary were not functioning correctly and not producing TSH as it should. a low TSH plus low Thyroid hormones T4 and T3 would suggest this, in which case your thyroid replacement is inadequate. 25mcg would be nowhere near enough for most people except those who are VERY sensitive to thyroid hormone, in fact a dose as low as that could well make things worse as it can suppress the TSH (Thyroid Stimulating hormone) which in turn will make the thyroid's own output even lower. This will result in your feeling worse, not better.

So my first suggestion would be to find out the ranges used by the lab (they should have them on the result sheet) and ask for a T3 test. If they cannot or will not do this test, then you can actually have that tested privately, information is on the main TUK website:

thyroiduk.org.uk/tuk/testin...

You can select whichever you wish, I personally do a home blood test from Blue Horizon. As a TUK member you can also get a discount.

This would be a starting point to finding out how to get better.

Hope this helps.

Marie XX

[Jackie]

Hi This is common with low Vit D, You can have a finger prick test, DIY from City Hospital in Birmingham. See thyroid bloods.

Jackie

[ScotsLassLondon]

Okay. So me too.

Exactly this.

You may not have noticed what's probably going on is Orthostatic Tremor. Your leg muscles are shaking/vibrating at such a high frequency (only when you stand still) the only way someone like a neurologist could tell is by putting a stethoscope to your leg and they would hear a helicopter sound.

As the sufferer your legs feel shaky and week, and then when you move or sit down it's okay. As a result I do everything fast.

I'm 38 and was diagnosed with it a year or so ago, in UK on NHS. They don't know what causes it (I have my opinions on it) and would just medicate with heavy duty Clonazepam which is a benzodiazepine. But really there's no cure...

That said, I'm certain this is linked to all our issues - ie, thyroid, B12 or one of the other factors linked and mentioned above.

Due to a missing DIO2 I'm only now getting treated for hypothyroidism (but the Armour actually made the Tremor worse) I'm now taking WP Thyroid.

I've found that taking B12 really calms my shakes down and as I have pernicious anaemia in my family and had gut surgery, and SIBO I suspect that the injections could be the next thing to try with this private doc I've found.

Happy to stay in touch and talk some more. Share symptoms.

But I'll repeat again - I'm certain this is a deficiency issue - whether it's Thyroid, or damage from long term low b12 or something else.

Z

XXX

[safu87]

I have this and have been diagnosed with stage 2 adrenal fatigue last summer and low t4 2 months ago. Seeing a naturopath about it all.

It has improved significantly but not completely gone. Mine was more felt in the legs, and at worse felt all over weakness.

[Marz]

I am putting my money on Low B12 Low B12 goes hand in hand with being Hypo ! Do not accept 'normal ' from you GP as they seem happy when you are even low in range. It needs to be at the TOP - around 800/900. The range starts at 500 in Japan and goes up to 1300.

I am now on injections and life has improved....

b12deficiency.info/signs-an...

Just looking at the list of Neurological symptoms on the list - scroll down a little - may ring some bells

[greygoose in reply to Marz]

I agree with Marz (this is becoming a habit! lol), low B12 could do that. I had the same problem, but it's getting better with B12 supplementation. My B12 was 350 when it was tested, and my doctor said it was 'perfect'. It wasn't. I also nearly lost the use of my right arm.

But having said that, being hypo does cause a certain amount of loss of muscle tone, so getting your hormone levels optimised will also help. And you're not going to do that on 25 mcg.

[Marz in reply to greygoose]

Yes - we must also remember that symptoms precede the blood test result. Some people have symptoms for years before it shows in a test. Again somewhere along the way Docs have also lost their clinical skills with this one as well

Also only 20% of the result reaches the cells - where it is needed - due to some being bound and some unbound. Yikes - I think the needle is stuck

Am also on the PAS forum where there is so much suffering due to poor diagnosis....

We must keep battling and spreading the word....

[Dramlouie]

Thanks for all the feedback, it really is so helpful. Just standing there talking to my friend and just needed to sit down. Then the anxiety kicks in but hopefully the solution is simple. It does make me cross, why should we have to fight to get proper treatment when all they can say is that I have anxiety. But I know when I am not right and when its due to having a wobbly, having two children gives you plenty of practise. I am getting a bad back now, just feeling weak and difficult to keep upright, even went to the physio and given a few exercises and told to go back in a few months. The doctor said he has only had one person with thyroid problems in years of practise, hhmm, I wonder how many people are still suffering due to his ignorance to the enormity of this problem, we suffer in silence or don't have a clue as to why we are feeling ill. I went to the doctors but was refused any blood tests, just said its all down to anxiety. I am taking a good vit B complex and a sublingual 1000mg methyl cobalamine B12 after doing some research. I wonder if anyone has had any dealings with chinese medicine or the alternative treatments, the people who are well don't need to come on these forums as they are out there enjoying their lives. There is an answer out there somewhere. Just looked at the symptoms of B12 deficiency, wow, I have a lot of them including heart attack from last year, had all the tests and the cardiologists think it could have been caused by a blood clot, but they don't really know. Never been tested for B12 or homocysteine levels. I have put myself onto a gluten free diet and due to my heart attack I am now not touching sugar, pies, chips and even MacD's, I have lost 2.5 stone since. My cortisol level was at the top range of normal in the morning then dropping sharply to the bottom range of normal at lunch time. My T3 and T4 urine test were at the bottom end of low, my T3 and T4 ratio was 1.5. I am taking 2 tablets nutri thyroid and the nutri adrenal extra made me feel unwell and light headed.

Will have these blood tests done privately, I want to get well for the summer................

Your feedback is soooo helpful and appreciated, I will post any improvements here.

Lou x

[Clutter]

Dramlouie, anaemia can cause those symptoms so you need to ask your GP for a full blood count, iron, ferritin, B12 and folate. Whiile they're sticking you they may as well test vitD too

nlm.nih.gov/medlineplus/enc...

[peterfromlondon in reply to Clutter]

i had all these too done,but all normal

[punkyb]

My first thought is always dehydration. Is your potassium and sodium normal or low? Do you drink plenty of water?

[rpremeer]

I started having these symptoms about 8 months ago. I'm in the US. My primary care physician has performed every lab test imaginable and everything always comes back normal. In the past few weeks, it has progressed to the point that if I have to wait in a line more than 15 minutes, my legs are wobbling so badly that I have to sit down. I'm scared to death and can't find any answers on the internet but appreciate the conversations about everyone's experiences with this. I have had anxiety and panic for 27 years, I just turned 50, and basically, my doctor just tells me to "calm down." There's no such thing as "calm down" when you're in the throes of a panic attack. It has exacerbated my anxiety and now I'm experiencing pure "fear" that I may have something like ALS. I had a friend pass away from ALS but her initial symptoms were very different. I'm going to see a neurologist and go from there, but I just stood in line at a restaurant and my legs are sore. This is the first time they have actually become sore after standing. I can walk a mile without any problems, it's only when I'm standing still. I simplly don't know what to do. Also, if you don't have insurance in the United States, you die. Simple as that. it's disgusting and most of the citizens have been brainwashed by our politicians and insurance companies that a single payer system will bankrupt the economy. It's horrific! Thankfully, I have a job that provides excellent health insurance. Sadly, most people do not have the level of insurance I have or none at all. If I could move to Canada, I would. Not to mention the idiot we have in the White House. I have a feeling if our political structure were more progressive, I would be receiving better treatment and a have a lead on a diagnosis by now.

[peterfromlondon]

hi ! I also have this and have low blood pressure like u ,i did have low vitamin d but take daily vitamin d tablets 2x 1000 iu .total 2000 iu.I was on much higher and that seemed too help alot but doctor said now my low vitamin d was stable so only take 2 tablets ! also that's odd 're voice me too ! I do sympathise with u ,not sure what you think but it's all distressing me !

[Dramlouie in reply to peterfromlondon]

I am feeling a lot better now on natural dessicated thyroid taking 4 tablets spaced out in the day. Keeping my vitamins and minerals up and taking thyroid support herbs. Hope you feel better soon.

[peterfromlondon in reply to Dramlouie]

oh good news from u !

[Dramlouie in reply to peterfromlondon]

Dont give up, lots of help on here

[peterfromlondon in reply to Dramlouie]

oh i do hope so ! makes u lose confidence ! thanks for your message .

[Dramlouie in reply to peterfromlondon]

Go and see a naturopath and put some questions on healthunlocked, you will get lots of help. Also see your doctor. Hope you feel better soon

[peterfromlondon in reply to Dramlouie]

its getting worse ! so prob going too increase my vit d tablets too 3=3000 iu ,trying too get a doctor's appointment ,told its around 3 weeks ,advice told try Mon or Tues or go too urgent care .!

[Dramlouie in reply to peterfromlondon]

Insist on blood tests including T3

[peterfromlondon in reply to Dramlouie]

t3? last time doctors said u worry too much ! it's anxiety !!!