Just out of hospital: I I been having shakes and... - Thyroid UK

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Just out of hospital

sunsation1 profile image

I I been having shakes and aches in all my limbs and also really bad insomnia.

TSH IS 3.1 range 0.27 to 4.2

T4 IS 22 range 12.22

T3 is 5.4 range is 3.1 to 6.8

Have no thyroid gland

I was on 125mgs on thyroxine but hospital have upped it 150mgs thought if T4 was high that your doseage came down??? Has anyone else had the above symptond and having shakes and aches in all my limbs and also really bad insomnia.

61 Replies
SeasideSusie profile image
SeasideSusieAdministrator

sunsation1

You haven't given any ranges so we don't know where your FT4 lies in relation to it's range. And when did you take your last dose of Levo before the test, it should be 24 hours before, too close to test gives a false high FT4.

Your TSH is saying you need a dose increase so it looks like the hospital is being guided by that.

Thank you

Hospital just gave me figures

Test
SeasideSusie profile image
SeasideSusieAdministrator in reply to sunsation1

When did you take your Levo before your test?

Day before

SeasideSusie profile image
SeasideSusieAdministrator in reply to sunsation1

Considering all the reference ranges we see here the highest upper limit for FT4 that I know of is 23 (range 11-23), other common ones we see are 7-17, 9-19, 12-22. So if your FT4 result is accurate (no biotin in any supplement for a few days before test) then it's possible it's either over range or near the top of the range, which is out of sync with your TSH.

just an FYI:somebody very recently had a 25 as top end,.. but can't remember who . ( & several yrs ago i used to have a 26 top end )

Mines usually best around 18

SeasideSusie profile image
SeasideSusieAdministrator in reply to tattybogle

I think I must have missed that.

In 1995 my surgery's FT4 range was 10.3-25.7 and then went to 11.8-24.6 and since 2017 it's been 7-17. I can't decide if it's better to have the narrower range now or not 🤷‍♀️

SeasideSusie ......my NHS one is now even narrower [7.9- 14 ] and so if i get fT4 of 20 it comes out as about 200% .. hence i'm rather dubious about the machines using these lower /narrower fT4 ranges .

i want to see some proper 'same blood draw' comparisons done between this [7.9-14] and some more usual [12-22] ranges, but i can't spare the pennies., and i'm avoiding the GP... But some of them are clearly giving very different fT4 '%through range' to others.

see differing fT4 % from same blood draw on this post:

healthunlocked.com/thyroidu...

Why have they increased my dose of levo though as I thought they decreased it if you had high t4 and tsh was going up too

They seem to be deciding based on the TSH result ... TSH goes UP when dose is too low, and 3 .1 is a bit on the high side for someone on levo .

Is 3.1 higher than you 'usual' TSH on 125mcg ?

if you were actually overmedicated you would expect the TSH to be BELOW range .... so even though your shaky / insomnia symptoms (and possibly fT4 ,if it's top of range) could potentially suggest overmedication , your TSH is clearly saying you're not overmedicated, and could probably do with an increase... so i guess they've gone with TSH.

fT4 can vary depending on time of last dose, but TSH 'should ' be a reasonable indication of whether your does has been too high or too low over the last few weeks , regardless of what time the last dose of levo was .

i suppose it is possible they have just totally ignored the fT4 and only looked at TSH without realising fT4 is pretty high ( lots of them just look at TSH and don't use their brain for anything else)

i agree , it does seem odd to have increased when fT4 looks like it must be pretty high,... ask them to confirm what the fT4 lab range was, and perhaps double check that they do really want you should increase.. mistakes do happen.

SeasideSusie profile image
SeasideSusieAdministrator in reply to tattybogle

I can't get a GP and private test from the same blood draw but I've done some same time tests (filled one vial for each lab from same fingerprick) with the private labs as an experiment on three occasions - MMH v Medichecks and MMH v BH and both Medichecks and BH tests were done with Eurofins County Pathology

1st time FT4:

Medichecks -81.00%

MMH: 66.00%

2nd time FT4:

BH: 83.00%

MMH: 57.00%

So it looked like Eurofins County Pathology (who did both Medichecks and Blue Horizon tests) was always testing higher than MMH.

3rd time:

Medichecks and MMH results identical

TSH suppressed with all tests (normal for me)

FT3 results close enough to not consider a problem with all tests

So I was none the wiser after all that!

SeasideSusie profile image
SeasideSusieAdministrator in reply to sunsation1

No thyroid tests on that print out.

nellie237 profile image
nellie237 in reply to sunsation1

I hope that they advised you to book with your GP re Iron. x

sunsation1 profile image
sunsation1 in reply to nellie237

No why

nellie237 profile image
nellie237 in reply to sunsation1

Haemoglobin of 116g/L indicates that you are anaemic. Per NICE:-

"Interpreting a full blood count

Anaemia is defined as a haemoglobin (Hb) level two standard deviations below the normal for age and sex:

In men aged over 15 years — Hb below 130 g/L.

In non-pregnant women aged over 15 years — Hb below 120 g/L.

In children aged 12–14 years of age — Hb below 120 g/L."

cks.nice.org.uk/topics/anae...

Based on your results, GP is obliged to check your Ferritin, and whilst he's at it he might as well check B12, Folate and maybe Vit D (if you're lucky).

I agree with nellie, and another reason is your MCV (Mean Corpuscular Volume) ie the size of your blood cells, although in range at 88 ideally you want it at 84-85, a high MCV indicates back to low Iron and or B12, so needs testing B12 needs to be at the top of the range and Iron 2/3-3/4 of the range.

The thyroid levels being high as it seems yet the TSH needs to be about 1 is high if it were me I'd get my cortisol level checked too given the wired n tired feeling as you may have Adrenal fatigue, and low Zinc?

The muscle pain top bet without testing could easily be low vitamin D level, which also leads to weak muscles and a susceptibility to infections due to low cathelicidins

Fatigue can also be a symptom of low Iron, the top symptom of low Iron..

Sooo nutrients to get tested are

B12, Iron, Copper, Zinc, Vitamin D, abd any others mentioned by others

Hope that helps

Thank was tested for cushings all was normal

Ranges added

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts you were on 150mcg until reduced in Jan to 125mcg

Which brand of levothyroxine are you currently taking, do you always get same brand levothyroxine

High TSH shows you are under medicated

Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine

What vitamin supplements are you currently taking

Important to retest vitamin D, folate, ferritin and B12 at next test

Vitamin levels tend to drop, when dose levothyroxine is reduced

Thank you hopefully thats what some of the symptons are then as cannot take much more of this chronic fatigue and aches and pains and insomnia and wired all the the time. Was tested for cushings but negative just so tired of it all

i'm just adding this summary i did for your last post, so we can try and figure out what going on: (if it's not correct, tell us what's missing )

"You were OK on 150mcg for a many yrs ,already post menopause , then felt ill , shaky , insomnia, had to stop work , fT4 was found to be way over range at 32 [12-22] ~TSH 1.3

You reduced to 125mcg in Aug ( a mix up meant you were reduced to 100mcg for a week or two, but then you stayed on 125mcg for a couple of months)

You started to feel more human again by October.

21st Oct TSH 1.9 .. fT4 19.6 [12-22]

22th Nov TSH 7.1 fT4 18.2 dose was increased back to 150mcg. ?operation on your throat?

23rd Jan TSH ? fT4 22.7 fT3 5.5 dose then reduced to 125mcg .

22nd Feb TSH 1.22 fT4 26.1 fT3 4.9 endo wrote last 3 TSH results were now stable, so advised stay on same dose.

11th Mar TSH 0.68 fT4 28.1 fT3 6.9

now: been in hospital as passed out have been having shakes and aches in all my limbs and also really bad insomnia. TSH 3.1 T4 22 T3 5.4 .... told to increase to 150mcg.

So, Total thyroidectomy ? When ?(graves ?) .

No thats perfect sorry my brain isn't working properly at mo all hospital could say was they couldn't find anything wrong physically even though I have all these aches insomnia high anxiety said I was an enigma? Also to say as they could not diagnose said I has CFS

when did you have thyroidectomy and why ?

In 1990 I went into a coma with thyroidtoxicosis

ok , thanks

having looked at this again , one thing stands out .... they keep bouncing you from 150 to 125 to 150 again:

on 150 you keep ending up over range for fT4.

and on 125 your TSH keeps going up .

..... so why the heck don't they go in the middle and tell you to try 137.5 ?

(ie 125 one day/ 150 the next = 137.5mcg/day)

Because they are idiots i guess they don't care about how we all feel

well if i were you i would have a chat with GP and suggest it yourself. (137.5mcg rather than 150mcg )

Gps one thats messed it up mainly

DIY it is then ....... lol

Is there anything you recommend for anxiety to take rather than antidepressants not on anything at mo

No , sorry ,anxiety isn't a problem i've had to deal with very often. (but to be honest i wouldn't recommend antidepressants for anything,, most people i know who tried them ended up more messed up than they were in the first place )

Worth asking as your very knowledgeable and thank you for your advice x

oh ... on second thoughts , buy yourself a bottle of "Bach Flower Rescue Remedy" .... i have found that is pretty helpful (tiny yellow bottle )

Had before did not work may try magnesium and tumeric x

sunsation1 p.s for what it's worth... people with CFS don't have thyroid results that go up down and all over the place like yours do ..... so that's just a cop out from someone who can't figure out what's causing some one with no thyroid to have constantly up and down thyroid levels.

In my opinion having such unsettled fT4 levels up and down to 26/28 ish ,and TSH levels up and down from 7 to 0.6 to 3 like yours are for no apparent reason , is a perfectly good explanation for the body feeling dreadful and the brain to feel anxious ....... they may not have an explanation for you unstable thyroid levels , but you can't pin up and down TSH levels on CFS.. people with CFS and no thyroid problem have very boring stable TSH levels.

TrishG67 profile image
TrishG67 in reply to tattybogle

Sorry not sure how long you have been post menopausal as it sounds very much to me like many of your symptoms are related to this. I was demented back and forth to private Endo altering doses of meds , types of NDT until he suggested let's try HRT as all your hormones are unbalancing each other. It was like a revelation. I never feel perfectly well but I am like a completely different person since. I would never have considered this as been post menopausal for do long. May be worth you considering to get a decent night's sleep. If you already take HRT then consider different type or dose? Good luck you will get there but you need to drive this yourself unfortunately as doctors are not educated enough on this sadly 😢

tattybogle profile image
tattybogle in reply to TrishG67

i presume the above reply about post menopause /HRT was meant for Sunsation1 :)

TrishG67 profile image
TrishG67 in reply to tattybogle

Sorry yes 😔

sunsation1 profile image
sunsation1 in reply to TrishG67

Not on hrt

sunsation1 profile image
sunsation1 in reply to TrishG67

I am 55 and stopped periods many years ago

Test

Someone on this forum recommended a book, ‘Unwinding Anxiety’ by Dr Judson Brewer. I found it useful. There is also an app by the same guy.

I may do what you suggest

Menopause be it pre, peri or post can cause similar symptoms you’ve described.

Check Dr Louise Newsons (Menopause specialist) website for good evidence based information and take this information to your GP, if you have trouble getting anything prescribed, if of course you want to go this route.

balance-menopause.com/

However you also have some anaemia issues going on there from screenshot your GP should be addressing those that are out of range and test other areas eg Ferritin, B12 and Folate and get to the bottom of why you have low haemoglobin etc.

That alone might make you feel better.

I'd get your B12 checked and get them to address your anemia. The anemia couldve caused you to pass out. In addition low B12 can cause shakiness and anxiety. Have a look at the b12d.org website they have a great symptom checker. For me going onto b12 jabs made a massive difference. I do wonder what is going on in the NHS these days. I find it impossible to get an appointment & the GP care is staggeringly poor. You will need to push them hard & be the one that leads them....lol.

Polaris profile image
Polaris in reply to waveylines

I agree with waveylines.

40% with thyroid disease go on to have PA/B12 deficiency and vice versa. Three in our family have both and three were misdiagnosed with ME/CFS.

I had these symptoms and, significantly, your RBC width is also high.

Martyn Hooper, Chairman of the PAS has information for professionals on his website. This is what he has to say about CFS:

martynhooper.com/2018/02/10...

I wrote to my GP, listing symptoms, with links to the PAS , and BMJ research document:

Summary points

• Vitamin B12 deficiency is a common but serious condition

• Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment

• There is no ideal test to define deficiency and therefore the clinical condition of patients is of the utmost importance

• There is evidence that new techniques such as the measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency

• If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features

I also had the book, “Vitamin B12 Deficiency in Clinical Practice”, by Dr J. Chandy, sent to the surgery, and was offered an IFAB test.

As you will have seen above, there is no reliable test for B12, which is why it’s so difficult to get treatment but it is Important not to supplement before any testing as it will skew results.

Good luck finding answers sunsation1 🤞🤞

sunsation1 profile image
sunsation1 in reply to Polaris

Thank you my last b12 test a few weeks ago was 531

Can you pop on the range as well ( figures in brackets). Was that taken with before taking b12 and no biotin for a week?

Ranges added

Hi ❤️

I had full thyroidectomy in 2019 after I was rushed in to hospital in thyroid storm (thyrotoxicosis) I was started on 125mg T4 but that was to high a dose I went bk hyper again (like my thyroid was still in my neck) the surgeon I was under decrease my T4 to 100mg again I was hyper, he again decrease me to 75mg T4 my last appointment with him he again saw I was showing symptoms of over medication, he gave up and put me back to my gp worst decision as I'm sure I should have seen an endo eventho we on here know they really are not that good, it was later on after I had bad bowle/stomach that the T4 had lactose in, I'm very lactose intolerant so bk to square one on lactose free T4.. Again I was hyper even on 75mg my bloods were awful after persisting and feeling really unwell the gp sought help from an endo who suggested T3 only lactose free, I worked my way up eventually getting to 40mg in the beginning of 2020 I felt OK blood work looked good then without me doing anything I felt ill again in April 2020, but my symptoms included me wanting to toilet (urinating) way more serve thirst, bad bone pain and bone vibration server headache shaking sweating, jittery, my gp looked at my thyroid results they looked OK but I noticed my calcium was over range twice but gp never told me I found them buried in my printouts, ive had parathyroid hormones over range and over range calcium and were told I probably have primary hyperparathiyroidism but I'm still fighting this as my bloods have gone bk in range but my thyroid bloods have gone haywire gp blamed symptoms on over medication and decrease me from my 40mg T3 to 30mg T3 I've now gone very hypo🤦‍♀️ and my other symptoms still remain, so gp asked if I'd do a trial of T4 again as all my symptoms were probably down to the t3🤦‍♀️ I've now been on the trail T4 for 16 days and no change in symptoms still wanting the toilet urgently still servery thirsty ect.. I also have cfs fibro, and I reckon ive had 4 OK thyroid blood tests since 2019 the rest have been all over the place without me fiddling about with my meds.. I was steady on T3 then for no reason my bloods went a bit nuts I thought maby I'd been given the wrong T3 but no, then they went bk OK again (still on same amount of T3, obviously my gp as a lot of influence in my dosing only taking instructions once from the endo I even took myself off the T3 for 5 days to see if the symptoms would go but they didn't.. .. I'm now waiting the 7wks to see how I've done on this T4 I still like you feel awful obviously I was very hypo after the decrease of T3 but I never have felt hypo only hyper never cold, no low heartbeat always fast, sweating, tremor, shaking, bad headache, wanting the toilet way more server thirst bone pain/vibration just feel very unwell, I really don't think I've done at all well on this synthetic T3, T4 medication I also have colitis and as I said I'm lactose intolerant. But Ive found in these last number of years GPS and endos don't really have a grasp on thyroid /parathyroid conditions and seem to just keep us perpetually ill with ignorance 🤦‍♀️🤦‍♀️

Hi,I agree with Nelly and Waveylines. You need to be checked for the cause of your anaemia (haematocrit and haemoglobin is too low and your Red blood distribution width is too high). Anaemia usually caused by iron, folate and B12 deficiencies. If you get a b12 test done, as per thyroid tests - do not just accept a ‘normal’ result as it’s very different to optimal and the testing methods are not great, so lots of controversy about what ‘normal’ actually is. Check out the PAS site on here for advice if you get to that point.

B12 is 531

I get bad insomnia when my thyroxine needs increasing

SeasideSusie profile image
SeasideSusieAdministrator

sunsation1

TSH IS 3.1 range 0.27 to 4.2

T4 IS 22 range 12.22

T3 is 5.4 range is 3.1 to 6.8

So FT4 is top of range. I really can't add anything to what I said before. TSH is high for someone on Levo and one would expect to see your FT4 much lower in range with this TSH result. So your TSH is saying you need a dose increase but your FT4 is saying you don't. It looks like the hospital is following the TSH result.

In your position, just in case there has been any problem with the test, I would want the test repeated at a different lab.

I'm going to ask for that

Test
SeasideSusie profile image
SeasideSusieAdministrator in reply to sunsation1

I don't know anything about that test but it looks OK, it's well within range, not high, not low, but I'm no expert.

Tedt

Test again
SeasideSusie profile image
SeasideSusieAdministrator in reply to sunsation1

Sorry, can't help, sex hormones aren't my thing.

What time do nurses administer your tablets? As a sigle dose some hospitals given the tablet 9 am what i after 6 am tabletsm and it is wrong . Did you self administer your own medicine.

To be honest if you are living in Manchester or London find private consultants for Poland.

I went Alexandre hospital, few month but the epaciaist was not good as Polish one I found later.

Also your diet is very important.

Personally I become vegetarian after reading few books. I found drinking milk, or eating cheese and dairy impacted on my hormones. I had excessive sweating and sleep distuption which all related to my multivitamin, even I had them in the afternoon.

I need to know very specific and vigilant about your diet too.

But please if you can effort to go private, it us better you stay for NHS.

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