I still feel very ill. Still have very heavy c... - Thyroid UK

Thyroid UK
109,119 members126,740 posts

I still feel very ill. Still have very heavy concrete arms. Could this be due to low cortisol levels or something along these lines. UK

Flowers14
Flowers14

A few months ago I posted regarding the deep heaviness in both of my arms. I've had it since beginning of 2014.

Anyway, I've kept to a good diet as posted before. I began drinking coconut water to up my pottasioum levels in hopes its due to low potassium but no luck at all. I'm starting to become housebound again as my whole body is to heavy to get me outside. I'm exhausted. Even my coat is to heavy to wear at this time. I've just started to take L Glusomate hoping it may help but truthfully I think I'm losing this fight.

Could it be down to low cortisol levels?

Could I have undiagnosed Addisons disease?

Could it be hypopoturism?

I'm doing everything I possibly can ie B12injections, folate, vit D, K2 Iron etc etc.

Im gluten free aswell.

I've been left by my gps and cant get out of this one. Any help or suggestions would be great.

Thanking you all

Prettyflowers

33 Replies
oldestnewest

Do you do subcut or IM?

I started injecting with subcut and my symptoms returned- but IM seems to have helped change things.

How low is your potassium? Have you had it tested?

How are your iron and ferritin levels?

How often are your injections and what type of B12 are you injecting?

Flowers14
Flowers14
in reply to Tnhundley

Hi Tnhundley

Iron ferretin etc all good. Waiting on potassium results. I do both subcute and Intramuscular and have done for a couple of years now.

Thyroid still needs testing as last one cancelled.

Tnhundley
Tnhundley
in reply to Flowers14

I would definitely try upping your potassium intake and and keeping track of it. When my potassium is low I always get that body heaviness. Recommend amount is 4700mg a day- coconut water is not enough. I have to drink two cups of coconut water, a zucchini, oranges, bananas, potatoes, sweet potatoes, every day...and I still don’t hit the potassium I need.

I’m not sure how often you are injecting but you may also need to up how much you’re injecting.

It may be from thyroid but I personally cannot speak to that as the only body heaviness I’ve ever dealt with were either from low B12 or potassium.

Flowers14
Flowers14
in reply to Tnhundley

Thanks Tnhundley

I've been drinking about 1 litre of cocnut water every day and assumed that was enough but it doesn't sound like it. I also eat bananas daily to but I'll need to get my results won't I.

Yes my thyroid can be causing this to I think. I'm just so tired of it and want to feel good for a change.

Sorry I'm so negative but feeling so down.

Thank you for your thoughts :)

You never did post your labs after your last post, so we still have no idea if you're under-medicated. Was that when the testing was cancelled? You really must insist on having them done. It's very important to know where you are, especially as you're not taking a very high dose of levo. :)

Flowers14
Flowers14
in reply to greygoose

yes it was cancelled. Ill have to follow up on this youre right. Ill get on it, thank you :)

greygoose
greygoose
in reply to Flowers14

You're welcome. :)

Hidden
Hidden

I have had heavy arms for 7 or 8 years now. In my case I don’t think it relates to any of the things you are trying so hard to tweak as I’ve tried all too but they made no difference. I’m waiting to get my latest bloods back but so far they will only test my TSH not the full panel.

I’m under a neurologist who tried to tell me it’s functional overlay to my confirmed Sjögren’s but this idea doesn’t make any sense to me either.

I think it must be the fatigue inherent to having two or more autoimmune diseases myself and it does worsen alongside resting tremors when I’m not able to get enough sleep.

My recent bloods were nuts so had to be redone (no results of repeats yet) but my potassium was soaring, calcium and magnesium too low and tests before that put me at CKD stage 3.

I don’t think you should assume that leaden arms are normal but could this be fatigue related for you or might you have other autoimmunity causing neurological features as I do?

I will hopefully be having biopsies taken during a gastroscopy soon to check for atrophic gastritis (B12 deficiency) and Ceoliac as well as other possible causes of GERD and Gastritis so hopefully I’ll know more then.

Flowers14
Flowers14
in reply to Hidden

I have sjorgrens aswell and I'm treated for it but the fatigue is relentless isn't it. Im underactive thyroid to. I had severe neuropathic pain last year, so bad I didn't want to live anymore. My left arm, wrist and fingers it was hell on earth.

I do have Spinal stenosis so I must look into that more as being the cause but I;m sure my cortisol, adrenals are very low.

Hope you get all sorted and feel better soon.

Thanking you Flowers14

Hidden
Hidden
in reply to Flowers14

Oh if you also have Sjögren’s too then I think the neuropathy can affect us by causing weakness - at least that is what I’ve assumed. I bet Sjögren’s is your main issue as it’s a systemic disease. My neuropathy has been a total life spoiler too as it’s everywhere. I rest my arms on soft pillows in bed and use a fold out perching stick for my legs and when I’m sitting I use it to rest my arms on. I also have OT made resting splints. Yours is the first post I’ve read anywhere on HealthUnlocked about leaden arms.

I think it’s to do with a very fine resting tremor myself. I decided this last year when I developed a more pronounced tremor whenever my sleep is disturbed.

Sjögren’s has a lot in common and is often misdiagnosed as ME/CFS for good reason!

Sorry to hear you’re unwell. What makes you query Addison’s?

Have you had a low cortisol blood result?

Flowers14
Flowers14
in reply to Bramble83

Hi Bramble83

I query Addisons because about 5 years ago my fatigue got very bad. I was sent to see a specialist in Nuneaton and Oh my gosh he was terrible. Anyhow, they did the cortisol test and tolm it was fine. Anyhow I asked for a copy of the test results and all it says is 'Normal' Theres no ranges given etc.

The 2nd appointment with this terrible specialist was pointless. I sat in the chair in his office whilst he spoke to someone on the phone (I'm not joking here). He got of the phone about 10 minutes later and said 'Well I cant give you a copy of the results cause as you can see our electricity keeps cutting out. To long to type the full story but what iv'e said is exactly how he treated me, appallingly.

Anyhow, it makes me wonder if I've just been neglected afnd I'm trying to function with hardly any cortisol or poor adrenal functioning.

Thanking you kindley

Flowers14

Bramble83
Bramble83
in reply to Flowers14

Out of interest what’s your BP like?

Have you ever taken steroids for any other conditions eg an asthma inhaler?

Flowers14
Flowers14
in reply to Bramble83

Blood pressure is very good :). I took steroids as I got weaker and weaker but I already had the weakness. I gained tons of weight and they didn't help. Was on them for anout 1 1/2 years. Lost all the weight

Just some ideas, because I don't truthfully know...

Could be a pinched nerve in your spine due to a wonky disc. Spinal stenosis can effect the arms or legs.

Heaviness in the limbs can also be a circulatory issue such as a problem with the arteries.

Or it could be that you've not had your full thyroid panel done to include t3, or you have and nobody has noticed it's crawling along at the bottom of the range. If you're not converting - then you're essentially fully hypothyroid.

hypothyroidmom.com/two-vita...

Adrenal fatigue is obviously a possibility too and if you have other symptoms of Addison's you may be onto something.. and should see a GP.

For low adrenals without Addison's... starting every day with vitamin c and some sea salt could help as they make cortisol. Also, you need to have good levels of vitamin b5, zinc and magnesium and b6 (potassium isn't on the list for adrenal issues). Upping the potassium in isolation may not do anything very helpful if your other mineral levels are rubbish.. especially if you have low sodium or magnesium. (Coconut water is really very good in the summer when doing a exercise in hot weather which is when we do lose a lot more potassium through sweat.) The same goes for vitamin d... magnesium is a big co-factor that you should include to make it work.

easy-immune-health.com/magn...

Flowers14
Flowers14
in reply to HLAB35

Thanks HLAB35

I've awful thyroid problems and under endo but theyre stalling and prolonging the T3 treatment trial. Been going on for a few years now but I'm on it thanks (when I'm functioning better anyway lol).

I popped into town today for 5 mins to pick up some vitamin b5, and zinc and some sea salt.

I was disappointed with my choices as I went into Holland and Barrett but Ibought some sea salt and Zinc Picolonate 22mg, but I wasn't thrilled with their choice of B5...are you able to suggest anywhere I can look safely on line to buy some? I take magnesium Bisglycinate 500mg 2 per day, Vit D 5000, K2, iron (gp) folate, I self inject B12 for last 2 years. I take B6 intermittently as I understand to much B6 can cause neuropathic symptoms.

I forgot to say that I do indeed have Spinal stenosis I think its at C4 and C5. Last year I was in severe neuropathic pain all down my left arm and hand. Im still doing physio to gain back its movement. My gosh it was hell on earth. Id have thought my gp or when I saw the neurosurgeon he would have told me that it could be the cause of my arm heaviness/weakness but neither have said. Think I need to chat with my gp a bit more when I can reach her

Thanking you

Flowers14

Hidden
Hidden
in reply to Flowers14

I have spinal stenosis too in C5-7. My neurologist pointed out that my pins and needles and heaviness in my arms is bilateral whereas spinal stenosis would only affect one side.

So unless your cervical discs are equally herniated on both sides or you only have one leaden arm I think it’s much less likely to be the culprit. But a good neurologist would probably be more useful to you more than an endocrinologist as you have Sjögren’s - which can mimic MS to perfection.

Flowers14
Flowers14
in reply to Hidden

Yes I;ve read that spinal stenosis would only be one side unless. But gosh I wish my gp would help me more. . Anyway, I'm under endo at the moment and it took so long to get to this point that I daren't change anything but I could ask for another referral. Also I'm sure there are many many people with spinal stenosis with the same feeling on both arms aren't you :)

Yes Id forgot that Sjorgren and MS are so close in symptoms

Hidden
Hidden
in reply to Flowers14

No I honestly don’t think mine is due to the spinal stenosis although I have it throughout my spine so it probably adds a bit to the overall problem. If our leaden arms were experienced by people with cervical stenosis then there would be millions of people complaining of this all sitting with arms on soft pillows etc. CS/ DDD is very common indeed whereas our leaden arms are due to something rare I’m sure.

I did see an endo twice but he explained that Hypothyroidism is common and Sjögren’s is rare and the Sjögren’s is the systemic disease and the cause of my neuropathy. He raised my dose of Levo on condition that I stopped T3 and this seemed to be what I needed. He also said that my Hashis is secondary to Sjögren’s even though it presented itself to my doctors long before. I asked him and a private endo if thyroid disease could cause my small fibre neuropathy but both said no it’s all part of Sjögren’s including the Hashis. This is why I don’t come here much as Hypothyroidism is not a serious systemic disease like Sjögren’s.

Flowers14
Flowers14
in reply to Hidden

interesting, thankyou :)

HLAB35
HLAB35
in reply to Flowers14

The reason I guessed the spinal stenosis is because of my mum (similar issue).. it could indeed be that's the problem and your metabolism is struggling to do any healing in the area due to struggling thyroid..making it worse.

Actually you're kind of right about b6. I find the cheaper sort can indeed cause issues and I stopped taking that pretty sharpish as my fingers went weirdly numb! But, if you switch to p-5-p it is better absorbed and easily excreted so cannot build up in the blood to cause the neuropathy issues.. well so far, no problems with me. I'll try to find a good link about the differences, but can't at the moment.

terrytalksnutrition.com/hea...

Slow-release b5 (Pantothenic Acid) from Nature's Best (online) or a cheaper one from Source Naturals from Health Monthly. The slow release one (I tried it) is a big tablet and I cheated and snapped it in half as it's a fair old dose.

Flowers14
Flowers14
in reply to HLAB35

That's brilliant thank you Ill try them. I've a very good B for you. Its Super B-complex High poency by igennus. I think I got them off Amazon. You don't need to take them all the time as they really work so please be careful with them. Good luck :)

Hi,

I’ve suffered from concrete legs and arms the past 12 months.

My cortisol levels have been very low. But at 9am not low enough. I had a SST short synacthen test. I was told I was borderline Addison’s. So nothing more was done. My TSH was too low, so my Levothyroxine was reduced. On reducing it I felt much better. But still not well enough. I could hardly walk. Crawling seemed better at times. I couldn’t even get to my garden. Clinging to walls etc to hold myself up. I was convinced the Levothyroxine had something to do with my condition. I reluctantly stopped Levothyroxine for one week. Within 2 days all my symptoms had gone!!! My GP witnessed this and requested an alternative thyroxine. My Endocrinologist prescribed NDT privately. Much better but still not enough that I could return to work yet.

I am convinced that Levothyroxine can have an effect on your adrenals/ cortisol. If my T4 is high my cortisol is low. So low it was only 68 on one occasion. Range is 155-600.

I suggest you get your TSH, T4, T3 and 9am cortisol checked. There are private companies that will do these tests if your GP won’t. In saying that they should. If you are unwell you have every right for your bloods to be checked. And full test results printed.

How much Levothyroxine are you on. Maybe a higher or lowers dose depending on your results.

Pam

Flowers14
Flowers14
in reply to McPammy

Hi McPammy

Gosh what an eye opener this has been reading your post. I just wonder if this is me aswell but I'm to scared to come off the levo, Im on 125mcg and 100mcg at weekends.

I'm having thyroid checked again soon TSH t 3 t4 by endo.

I cant believe your cortisol was so so low. What did they do to bring it back up or did it happen naturally once you came off levo?

I've just bought some sea salt and zinc and looking for good B5 to help myself bring up my cortisol levels as I'm so weak. I couldn't wear my coat today as it was to heavy for me.

Ill ask gp for another cortisol test.

Do you know where I can get a cortisol test done?

Thanking you

McPammy
McPammy
in reply to Flowers14

Hi. You can have your 9am cortisol bloods request via your GP. I go to my local hospital to draw the blood with the form. Just call your GP and request over the phone. That’s what I do.

You can then have a printed copy. Or ask your Endocrinologist secretary to give you a blood form.

Let me know how you get on please

Pam

McPammy
McPammy
in reply to Flowers14

Please do not come off Levothyroxine. I only did out of desperation. And it showed for me that it was the culprit then. My new Endocrinologist wants to now try liquid thyroxine to rule off the fillers being the problem. Maybe you could request a trial on liquid thyroxine?

Flowers14
Flowers14
in reply to McPammy

don't worry ill not stop my levo without endos input ;;0

McPammy
McPammy
in reply to Flowers14

My cortisol got better once on NDT. Once again showing it probably is the Levothyroxine. I’m still under investigation. Trying liquid thyroxine starting this week to rule out the fillers. If I’m still reacting badly. Then I think it’ll be checking my T4 to T3 conversion. Have you had that checked. There is a formula to work it out. If high T4 and low T3 this is a good starting place to check.

Hidden
Hidden

I had this symptom - and others - until they finally acknowledged I couldn’t tolerate Levothyroxine. The drug itself was like poison to me - two or three days off it and my symptoms improved greatly. It was useless anyway. Just didn’t convert to FT3.

Flowers14
Flowers14
in reply to Hidden

What made them suggest to come off it? I'm wondering if that'll be suggested to me?

Hidden
Hidden
in reply to Flowers14

I took myself off it for 3 days and was lots better. I owned up to the consultant and he gave the Junior Doc a sideways glance and said: I think we’d better get this lady off Levo.

I wouldn’t advocate stopping it long term but 3 days will do no harm. Heavy arms and concrete legs were two of my worst symptoms.

Flowers14
Flowers14
in reply to Hidden

That's really interesting Grincho. I will look into this sensibly. Thank you so much

My Mum has similar symptoms, it took to years to be diagnosed but she has Polymyalgia.

You may also like...