Shaking Inside: Hello everyone , me again, !!! I... - Thyroid UK

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Shaking Inside

astroscopesuk profile image
14 Replies

Hello everyone , me again, !!!

I have posted about this before, but this shaking inside thing, I have only just been informed from my GP

that it is a nasty side effect from the levothyroxine. Quite honestly it makes me feel very sick all day and its very uncomfortable when sitting down as it makes me feel like a washing machine on spin speed 1000!!

My GP put me on slow release 80 mg beta blockers at first, but this just magnified all my symptoms , and i fellt like i was on a shaky bus, on the roof as it made my tinnitus unbearable. I thought that upping ones levothyroxine was supposed to be an improvement, not make matters worse. I was very ill on 50 mg, and initially felt rather better on 75mg, until these horrid internal shakes.

Any way my GP has since put me on a lower dose beta blocker and tells me that if the low dose doesn't work then up it to two and if thats no good to 4...!!!

I was just wondering if anyone else has had a similar experience with this and what if anything has anyone found that makes a significant beneficial difference, as Im beg ginning to feel as if im being used as a guinea pig by my GP to find out what works on difficult patients,,,!?

Regards

Astro

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Clutter profile image
Clutter

Astro, I had similar side effects with Levothyroxine but I'm fine on Levothyroxine (T4) and Liothyronine (T3) combination. Ask your GP if s/he'll prescribe T3 with a reduced dose of T4. Some GP's will only prescribe T3 when it is recommended by an endocrinologist. If this is the case you may want to consider buying T3 online and self medicating.

astroscopesuk profile image
astroscopesuk in reply toClutter

Hello Clutter.

Thankyou,, I did ask my GP ABOUT T3, but he shook his head and said were only concerned with T4.

Unfortunately im not seeing my endo till Dec. = (!

Thanks for your help .

Your always very kind

Regards

Astro

Clutter profile image
Clutter in reply toastroscopesuk

Astro, PM me for a source if you want to self medicate before you see your endo. Sometimes presenting the endo with improvement in health and symptoms persuades them to prescribe T3.

astroscopesuk profile image
astroscopesuk in reply toClutter

yes clutter, that would be lovely of you.

Thankyou,,just my sallary now doesnt leave me with much money for the month after

being off work, and i have to rely on my boy to give me housekeeping to feed us !!!

i wont be able to do much over time till the end of the year i shouldn't think .

Im on so many drugs.. one to stop sweats ,natural hrt, levo, and another drug to stop it messing up my tummy!! But the levo seems to be giving me the shakes, and so now my gp has given me another beta blocker less dosage to try ,after he had me on anti depressants too!!!

I came off them, and the 80mg beta blocker slow release as it made everything magnified.

now on 25mg beta blocker that if it doesnt work have to up it to50mg and then if thats no good up to 4!!!

I wish they would put that side effect on the instructions !!

any way, the lorratadine trick helped,, Thankyou

Kind Regards

Astro

shaws profile image
shawsAdministrator

I haven't had a similar experience but I think some members have. The problem is that beta-blockers interfere with the uptake of levothyroxine and that could also be a problem for you.

Ask your GP to prescribe some T3, say half a tablet (10mcg) to your 50mcg of levo. T3 might calm the symptoms of levothyroxine down a bit. Tell him about beta-b's and levo. I bet he doesn't know. I had constant palpitations on levothyroxine and I think many others have done so too. You might be better altogether on T3 alone but go one step at a time, if he permits.

astroscopesuk profile image
astroscopesuk in reply toshaws

Dear Shaws

My Gp wont entertain T3 at all, he says my tsh is within normal limits and thinks im fine.

Because he thinks that all or most of his other patients have just taken whatever dose of levo and been fine, but my poor little body isnt used to all these drugs,, the most i ever took is ibuprofen,,

even when i had cancer i had to come off the tamoxifen, as that destroyed my womb,,,..My body doesnt love drugs,..worst drug addict ever here..lol,,

I just end up being very ill or very well, and there's no inbetween!

Trouble is when i take all these drugs i go off eating,,, but i still put on weight,just cant win!

I hope youre well#

Kind Regards

Astro

shaws profile image
shawsAdministrator in reply toastroscopesuk

If you email louise.warvill@thyroiduk.org and ask for a copy of Dr Toft's Pulse Online Article. Give a copy to your GP highlighting question 6 re T3 or a suppressed TSH. Ignore the last para as we know that's what all doctors think anyway. This is an extract you can also give your GP that T3 may be more helpful to you than anti-depressants. He could allow you a trial of 10mcg of T3 to a 50mcg reduction in levo. Some people just cannot tolerate it. The statement below weren't classified with hypo but just symptoms. So I would say the addition of 10mcg of T3, seeing you are hypo, may be of more benefit than anti-d's.

Part of a statement in the British Medical Journey - BMJ Volume 315: 29 November 1997.

"Since they complained of a considerable reduction in their quality in their life, which had not been helped with other measures, we decided that it was justifiable to try treating two of them with 100mcg of levothyroxine.

Much to our surprise they reported considerable improvement in conditions, while the result of the thyroid function tests remained within the reference range...

It should be noted that such patients are often given anti-depressants (at worse an expense and a dangerous placebo) without apparent affect.

While the present study suggests there is no scientific justification for this treatment, it is intellectually arrogant to assume that we know everything about the physiology of thyroid secretion and its controlling hormones or the pharmacological effects of exogenous thyroxine. In view of the lack of effective treatment for this group of patients, we believe that further investigation of the effects of thyroxine is justified as Skinner et al proposed."

astroscopesuk profile image
astroscopesuk in reply toshaws

Dear shaws

Im now off the anti d sbut the gp keeps shoving me on beta blockers for the shakes.

He thinks the shakes are due to the levothyroxine, im not so sure.

most of the stuff ive read says that its mostly in the arms and not the legs, its all over for me, and starts on m y legs and it s really disconcerting, I ran out of pain killers for my leg this weekend and i had some major sweats and panic attacks,, i dont usually suffer from them.

I am on 75mg levo , and ranitidine , and clonodine, and now 25 mg of this beta blocker,

I am really not a fan of these beta blockers as they do mad things to my heart,,,

and make me feel really low,

When i was on the anti depressants i got a stye and the sweats got worse and the tiredness was worse,, this beta blocker makes me fall asleep ,, i wish the gp would get it right,, i feel like im going to a drug additcs sweet shop,, i dont know how im going to find out if i need t3 or if im bad at processing the t4, but i dont go a bundle on these drugs..just fed up of all the side effects .

many thanks

Astro

shaws profile image
shawsAdministrator in reply toastroscopesuk

This is a previous link re betablockers. We cannot win sometimes:-

healthunlocked.com/thyroidu...

An excerpt:

Beta blockers and corticosteroids that only inhibit the peripheral conversion of T4 to T3 interfere minimally with thyroid function test results. Propranolol hydrochloride (>160 mg/d), atenolol, and metoprolol tartrate produce small reductions in total T3 levels.

ncbi.nlm.nih.gov/pmc/articl...

Ansteynomad profile image
Ansteynomad

What sort of state are your adrenals in? An internal tremor is often an indication that adrenal function is less than optimal.

If your adrenals are not up to snuff, you will have difficulty tolerating levothyroxine and your GP should know this - it's in the prescribing information.

"Your prescriber may only prescribe this medicine with special care or may not prescribe it at all if you:

• have adrenal gland problems or have risk factors for developing adrenal problems such as panhypopituitarism

astroscopesuk profile image
astroscopesuk

Dear Ansteynomad

My Endo gave me a 24 hr pee test and said there was nothing wrong with my adrenals. But my endo is very pompous,,,

I have an appointment with him in December.

I dont know if the gp knows about beta blockers and levo,, i think he thinks he knows everything,

But he put me on 80 mg slow release beta blockers and my tinnitus was like big ben , and my shakes were ten times worse. Then he put me on anti depressants and it was silly , they didnt do a thing, just my body doesnt like all the drugs.

Ive never been a big pill taker , and now i have to take so many ,,one to stop the sweats two to make my thyroid work, natural hrt, and another to stop the drugs messing my tummy up and now three more to stop the shakes!!!

i feel a mess just on all these drugs,,,

Regards

Astro

Middleagemadness profile image
Middleagemadness

HI there. I have exactly the same internal trembling as you describe ( like I have had way too much coffee) for months now. I have a degree of adrenal fatigue and am on Erfa and this all started since starting on NDT 9 months ago and is getting worse and worse. I cannot tolerate Levo hence the NDT.

My pulse and blood pressure are ok - just this permanent shaking inside. I was so desperate last week I went to my GP to ask for Valium - which he kindly prescribed after suggesting betablockers which I refused.

I am only on 60 - 75 mg of Erfa and the shaking gets worse if I try to raise it. I am desperate to find a solutions as this seriously affects my daily living/work, my muscles are even more tired, stiff and aching/weak than they were before. I am trying to get enough money together to see DR P, although I'm not sure that anyone can do anything to help me. Very depressed about the whole thing. Hope you find a solution - if you do PLEASE let me know! Good luck to you. This it no way to live.

suzannai profile image
suzannai

YOu need to check adrenal function and address it as i think this is the adrenaline being put out by the adrenals due to not being able to handle the T3.

astroscopesuk profile image
astroscopesuk

Dear suzannal

i had a 24 hr urine test and my endo said all was ok,, my gp says that shaking is a side effect of the levothyroxine, but its driving me nuts and currently to date neither beta blockers nor silly antidepressants do a thing.

i cant function when my whole body buzzes on spin speed 1000 all day

as i feel sick,,

and my gp wont listen,,,

5 months later im stll feeling rough, and unable to walk far(bursitis on hip not recovered ) or work as i shake all day till i go to sleep,,,

any other ideas?

hope this note find s you well

kind regards

astro

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