BLOOD TEST RESULTS, Comments/Advice appreciated. - Thyroid UK

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BLOOD TEST RESULTS, Comments/Advice appreciated.

SPD1 profile image
SPD1
107 Replies

Hello,

i have just had blood test results back from Medicheck and would very much appreciate any views or advice.

TSH 0.017 (range 0.27 - 4.2)

T3 4.35 (range 3.1 - 6.8)

T4 22.3 (range 12 - 22)

TGO antibodies 10 (range 0 - 115)

TPO antibodies 9 (range 0 - 34)

Vitamin B12 (Active) 135 (range 37.5 - 188)

Vitamin D 42.6 (range 50 - 175)

Folate 16.72 (range 3.89 - 19.45)

Iron/Ferritin 150 (range 30 - 400)

CRP HS Inflammation marker 0.7 (range 0 - 5)

I was diagnosed Hypo 20 years ago by Doctor S in Birmingham and have been on Levothyroxine only ever since, for the last 10 years i have been taking 150mcg daily of the same brand (Actavis) and have felt absolutely fine up until about 8 weeks ago where all of a sudden i am experiencing the following symptoms,

Arm and Leg tremors, Muscle twitching (all over), slightly blurred vision, Dramatic Hair loss, eyebrows thinning, waking up 4am-5am and struggling to get back to sleep, bizarre feelings in my feet and forearms when i am lying down, almost numb but not quite, it disappears once i move around, slight drop in energy levels, slowdown in mental process.

I thought that possibly Actavis had changed their constituents so i have spoken with senior personnel at their manufacturing premises in Barnstable but they assure me nothing has changed (hmmm, that may or may not be the case) anyone else had issue with Actavis Levo??

Over the last few years my TSH has been anywhere between 0.01 and 0.08 with T4 at top end of range and as i said i have been absolutely fine (luckily) It just seems really bizarre that after all the years and changing nothing i am suddenly experiencing the above, it's almost as though i am displaying both Hyper and Hypo symptoms all of a sudden, doesnt make sense after years of stability.

I'm stuck now because i know that if i go and see my Doctor the first thing she will suggest is lowering my dose which may possibly be the answer but if it's something else and i have lowered the dose and then slump it will be difficult to get her to raise it again.

Any views, comments are most welcome indeed.

many thanks.

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SeasideSusie profile image
SeasideSusieRemembering

SPD1

Did you do your test no later than 9am, after an overnight fast from evening meal/supper the night before, drinking water only before the test?

When did you take your last dose of Levo before the test?

As far as I am aware ianessex is the only member who has mentioned that he feels his most recent batch of Actavis appears to be more potent. This is the post he wrote:

healthunlocked.com/thyroidu...

I take Actavis, have for many years, and I haven't noticed any difference; however I have many boxes in stock so I am not yet using the most recent batch.

As for your results:

TSH 0.017 (range 0.27 - 4.2)

T3 4.35 (range 3.1 - 6.8)

T4 22.3 (range 12 - 22)

These show an over range FT4 and FT3 only 34% through range, that suggests that you don't convert T4 to T3 very well, FT4 and FT3 should be in balance.

However, if you took your Levo before your test this would give a false high FT4 and you can't then say for certain that your conversion is poor.

TGO antibodies 10 (range 0 - 115)

TPO antibodies 9 (range 0 - 34)

These are low and negative for autoimmune thyroid disease with these current results.

it's almost as though i am displaying both Hyper and Hypo symptoms all of a sudden, doesnt make sense after years of stability.

That could be indicative of autoimmune thyroid disease aka Hashimoto's. Have you ever had antibodies tested before? Have they ever been high in range or over range?

Vitamin B12 (Active) 135 (range 37.5 - 188)

This is a good result.

Folate 16.72 (range 3.89 - 19.45)

This is a good result. B12 and folate work together.

Iron/Ferritin 150 (range 30 - 400)

I take it you are male? That is the normal range for males. It's said that half way through range is recommended; however, I've also seen it said that 150 is a good level for males.

Vitamin D 42.6nmol/L (range 50 - 175) = 17.04ng/ml

This is low. The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml).

To reach the recommended level from your current level, based on the Vit D Council's suggestions you could supplement with 4,900iu D3 daily (nearest is 5,000iu)

vitamindcouncil.org/i-teste...

Retest after 3 months.

When you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

For oral supplementation that is swallowed, D3 softgels give the best absorption and are superior to tablets and capsules. A good brand at a good price is Doctor's Best which contain just D3 and extra virgin olive oil and this company is about the cheapest, has 3 sizes of bottles and has good customer service

dolphinfitness.co.uk/en/doc...

Some people prefer an oral spray (eg BetterYou) but I don't like the fact that it contains unnecessary ingredients. There are also sublingual liquid supplements (eg Vitabay Organics).

There are important cofactors needed when taking D3 as recommended by the Vit D Council

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

thefamilythathealstogether....

drjockers.com/best-magnesiu...

Check out the other cofactors too (some of which can be obtained from food).

CRP HS Inflammation marker 0.7 (range 0 - 5)

This is good.

SPD1 profile image
SPD1 in reply to SeasideSusie

Hi, many thanks indeed for your response, i took my last dose at 11pm the evening prior to blood draw which was at 11am the following morning, fasted overnight with just water prior too.

It seems a bit coincidental that Ian has noticed a difference as well, Actavis told me that they outsource the fillers so possibly it may be one or more of them even though they said everything is tested in the lab prior to manufacture, they even told me they had re tested the batch numbers i listed to them and they could find no issues. I tried Mercury Pharma Levo for 5 days to see if that made any difference which it didn't really but i now realise 5 days is not long enough as the Actavis would still be quite strong in my system?

I have never had antibodies checked before.

With that result do i assume there is no need to supplement B12 ?

Yes Male :-)

I have noted your suggestions for Vit D and Magnesium, thank you.

Do you have any suggestions for Hair shedding, i have always been fortunate and had a really good head of hair but the fall is alarming, i have heard and read that Biotin is quite good at arresting shedding and promoting regrowth?

I'm not sure now whether it's potentially the Actavis brand causing this or something else.

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

It would be a good idea in future to always make sure that you do your blood tests under the same conditions. Always advised here:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

I really don't know about Actavis. When I finish my current box I will start using the most recent one dispensed to see if I notice a difference. The batch numbers on those are:

100mcg - TC1502 - Expiry 02/2021

50mcg - TA1842 - Expiry 01/2021

Are those the same as yours? I have lots of other boxes so if you can give me the batch numbers I'll check and give them a try.

Levo has a half life of 7 days, so it takes 7 days for half the dose to be eliminated, then another 7 days for half of what's left, etc. So 5 days really wouldn't make much of a difference.

Your antibodies are very low but one negative doesn't rule out Hashi's. However, with Hashi's you get swings from hypo to hyper and back again so you would possibly have noticed that before now if you did have it. Apparently you can have Hashi's without raised antibodies.

No need to supplement B12, you have a very nice result there for a natural level. Your folate level is good too.

As for hair loss, yes it can be a symptom of hypothyroidism but also the cause can be certain vitamin deficiencies. Have a look at this article

hubpages.com/health/16-Vita...

SPD1 profile image
SPD1 in reply to SeasideSusie

Thanks very much for all those tips Susie, duly noted :-)

Yes i agree that 5 days was too short to give another brand a chance.

I have never had issues with my hair before though and it's as though the symptoms i'm experiencing are Overactive so can overactive cause hair loss? it's really dramatic! do you know of anything that can help with fall, Biotin is spoken about an awful lot in terms of hair support.

I was absolutely fine with my Actavis up until 8 weeks ago, i finished a 2 month prescription and opened a new one and the following day i was experiencing the symptoms, i ended up complaining to the chemist and they actually were superb, i swopped for a new batch, tried it for 2 days, same symptoms, swopped for another batch, same, 2 days, same symptoms, tried a different chemist with yet another batch, 2 days, same symptoms, the batches i have at the moment are

100mcg TC 1493 01/21 expiry

50mcg TA1838 01/21 expiry

Earlier problem batches

100 mcg TC 1489, TC 1493

50 mcg TA 1823, TA 1831

It would be very interesting indeed to see if you respond differently to the batches which have the expiry date which is furthest away as one would imagine that will be the tablets that have possibly changed.

Will have a look at the Vitamin link. thanks.

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

I have all of those batches except for 50mcg 1838.

Which batch number was the first one you experienced problems with, I will trial them for a few days and see if anything happens with me.

SPD1 profile image
SPD1 in reply to SeasideSusie

I can't remember Susie but what i would say is i have tried 5 different batches in the last 8 weeks or so, i get the same symptoms with each batch, it just doesnt make sense after being so well on Actavis for donkeys years and then such a dramatic reaction :-( it will be very interesting to see if you react at all! I dont know whether to try a different brand now for a few weeks but i have stuck with the same brand for a reason, consistency, different brands do make a difference as i found out years ago before sticking to Actavis, do you know anyone who has tried Mercury Pharma, Eltroxin? that's not a generic brand and supposed to be very good.

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

I'll just randomly pick one then I'll start with the 100s and see what happens, maybe add in the 50s as well later on.

Eltroxin used to be a good brand years ago, I think it was made by Goldshield, I used to have it named on my prescription. Then it disappeared and I changed to Actavis and have been on it ever since.

Eltroxin is now available, now by Advanz with Mercury Pharma the licence holder. I doubt it's the same as the Goldshield.

SPD1 profile image
SPD1 in reply to SeasideSusie

Yes, Goldshield, i used to be on that as well and it was excellent, what dose are you on? I have review with my doctor in a couple of weeks, last one was January this year and she was concerned about my TSH at 0.01 and wanted me to reduce but i argued against because i felt so well, she let me stay as i was but i think this time when my NHS test comes back (they only test TSH now in my surgery) and it's still around that figure which i'm sure it will be given where it was with the Medichecks test last week she will put more pressure on me to reduce, problem is if i do reduce and then turn Zombie like it will be almost impossible to get her to up my dose again as they are paranoid about TSH levels, as you will know.

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

I am prescribed 150mcg Levo but actually take 115mcg with some self sourced T3 (which my GP doesn't know about) as I discovered I didn't convert T4 to T3 well enough.

My GP doesn't like my TSH either, with NHS tests it comes back as <0.02 (Medichecks test goes lower and my level with them is <0.005 but the GP doesn't see those results). Fortunately the NHS lab tests FT4 and FT3 when TSH is suppressed. She constantly beats on about suppressed TSH and being overmedicated so I say to look at the FT4 and FT3 they are well within range. It's a boring, frustrating ping pong game so I avoid her whenever possible. I have discussed my results with the Advanced Nurse Practitioner who has a brain and understands that after 44 years of being on Levo my TSH probably will stay suppressed and he has no problem with it as my FT4 and FT3 are in range.

SPD1 profile image
SPD1 in reply to SeasideSusie

So you have fine tuned to find 115mcg works best for you alongside the T3, how do you manage to get the 15mcg as i thought Actavis only do a 100 and 50 tablet or do you have a precision cutting machine ? :-)

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

I use a pill cutter and cut the 50mcg tablet in half. Then I alternate over 5 days

125/100/125/100/125 = 575 ÷5 = 115

It took a lot of tweaking to find the right dose but it seems to work well enough for me :)

SPD1 profile image
SPD1 in reply to SeasideSusie

Ahhh, i see :-) i just mentioned to greygoose the pill cutter i use is useless, unless it's me of course :-)) are there better quality pill cutters? mines a blue plastic thing from the chemist.

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

Mine is a Safe and Sound one like this

amazon.co.uk/Safe-Sound-Pil...

I've had it a few years and one I bought more recently doesn't cut as well as the original one.

Try a craft knife or Stanley knife (with a clean blade :D )

SPD1 profile image
SPD1 in reply to SeasideSusie

Best stick to a pill cutter me finks as i would probably end up taking the end of my finger of at some stage with a Stanley :-))

SPD1 profile image
SPD1 in reply to SeasideSusie

Good morning Susie, i am still trying to get the hang of this messaging, please bear with me, is this a continuous thread that you are able to see your end, ie, can you see all conversations and exchanges, with Greygoose and bantam on this thread, i'm not sure if only i can or you, Greygoose and Bantam can, or am i a numpty!

I just wrote a response to Greygoose about me reducing my dose last night and the subsequent negative reaction, i was about to drop you the same message are you able to see that? if so i would appreciate your view, if not i will message you directly. many thanks.

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

Good morning.

Yes, I can see the whole thread. It's on the open forum so it's all on view.

I am surprised that you have had those reactions so quicky to a dose reduction and they're not something I've experienced with a dose reduction.

How are your nutrient levels - Vit D, B12, folate, ferritin? Some of those symptoms could be due to low levels. But of course that doesn't explain why they should come on suddenly when reducing Levo.

I think maybe get an appointment with your GP, even a phone appointment, mention all this and see if you can have a prescription for a different brand, or see if the pharmacy will let you have one (they wouldn't at my pharmacy without a new prescription). You'll only know if it's the Actavis if you try a different brand.

I took a 100mcg tablet from batch number 1489 around 6am today, it's now just after 10am and I don't feel any different. Will keep my eye on things for a few days and let you know if I notice anything.

SPD1 profile image
SPD1 in reply to SeasideSusie

Hi Susie,

it's a bit alarming really!! i was thinking of getting Mercury Pharma Levo but of course i am not sure how i may react to that as maybe it has different fillers. I think if i speak to my GP she will immediately suggest a reduction and then i will struggle to get back up if necessary, like you say it's probably best to try a reduction myself. It will be interesting to see how you fair with those Actavis. The tremors are quite concerning, i remember a long time ago whilst i was attempting to find the right level i used to get arm tremors if i went up too quickly or was maybe taking too much but never leg tremors, i do know i have an ultra sensitive system but the symptoms seem a bit excessive if it is in reaction to a possible change with Actavis.

My Other results are above and it would appear that everything seems ok apart from Vit D which i will supplement, what do you think of my Vit B12, i know it seems decent but i'm just wondering if i might benefit by supplementing that as well as i have read B12 can give neurological symptoms if low, i think the NHS range is much broader than Medichecks? i will supplement Magnesium as well.

I have been taking Flaxseed with pumpkin and sunflower on cereal and also almond, walnut and brazil nuts to assist with nutrients but also to hopefully support my hair fall which i believe all the aforementioned are good for hair. I dont think any intefere with Thyroid?

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

Oh yes, I can see your vitamin results again now.

what do you think of my Vit B12, i know it seems decent but i'm just wondering if i might benefit by supplementing that as well as i have read B12 can give neurological symptoms if low, i think the NHS range is much broader than Medichecks?

Medichecks do a different B12 test which is why there's a different range. Your GP does a serum Total B12 test which measures, as you'd expect, the total amount of B12 - bound and unbound/active. Medichecks test is Active B12 which just measures the most important part - the active part which is the B12 that is free and available to be taken up by the cells. It's a better test. Your result is really good.

As for flaxseeds, a moderate amount shouldn't be a problem. I've read that the limit is 2 tablespoonfuls a day, otherwise it may prevent absorption of iodine by the thyroid, and Levo contains iodine (not as an added ingredient though). Not sure if it's a problem or not, it's not something I have looked further into. Pumpkin and sunflower seeds again should be fine, I have them in my muesli every day.

Walnuts I've read can decrease the absorption of Levo so again a moderate amount.

Brazil nuts, if you're taking them for the selenium content then be aware that the pack needs to say "Grown in selenium rich soil" for there to be any selenium. Then again, selenium content varies greatly so knowing which area they were grown in tells you how much selenium there's likely to be in the nuts. This article is useful and shows the selenium rich areas

honey-guide.com/2012/11/19/...

The only way of knowing how much selenium you're getting is to buy a good quality supplement.

SPD1 profile image
SPD1 in reply to SeasideSusie

Thanks Susie,

the Brazil's are from Tesco and looking on the pack it says origin Bolivia :-) it's anyone's guess as to nutritional value :-) as you suggest probably better to buy a good supplement instead.

Do you supplement with Magnesium? if so what sort of dose? i think i probably need too.

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

Yes I take magnesium as a cofactor of Vit D.

Check out the different forms and choose the one most suited to your needs.

I take Magnesium Citrate as I need help with bowels, but I also take Magnesium Taurate for cardiovascular help.

Dose will be on the pack but it's generally around 350-450mg, with the higher dose for males.

SPD1 profile image
SPD1 in reply to SeasideSusie

Ok, thanks very much :-)

SPD1 profile image
SPD1 in reply to SeasideSusie

Could i run this past you please, i have noticed over the couple of weeks that i have much darker marks around my eyes, even to the extent that a good friend of mine asked if i had a black eye, i have Really noticed it today, i have always been a little dark and so was my mother (quite common for offspring to have the same i believe) but i am wondering with it being a lot worse if it's a sign of adrenal stress?

Thanks.

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

Dark circles under eyes can be a sign of adrenal problems, also hair loss.

adrenalfatiguesolution.com/...

If you want to do an adrenal test, please make sure it's one that does both cortisol and DHEA not just cortisol alone.

Regenerus and Genova Diagnostics both do a 24 hour saliva test that measures both.

You use name ThyroidUK as your "practioner" as they don't deal direct with the public.

I use Regenerus as they email you to say your results are ready, you log into your account with them and see them immediately.

Genova send results to ThyroidUK who send them on to you when you've sent all your details through.

Regenerus thyroiduk.org/tuk/testing/r...

Genova thyroiduk.org/tuk/testing/g... (test code is END01)

SPD1 profile image
SPD1 in reply to SeasideSusie

Thanks Susie, i think i'm in trouble with this, i will try a different brand from tonight, see if there's any change over the next 7 days, ie, any improvement at all in symptoms, if it's the Actavis i would imagine i would see some difference, all these symptoms seem Excessive though and Ian has not noticed anything as dramatic, will be Very interesting to see how you go on, providing you have one of the latest batches, if there's no change i will have to go to the GP and get further tests carried out, i know she will reduce me straightaway and that may well not be the primary issue then it will be virtually impossible to get GP to raise prescription dose again. :-(

greygoose profile image
greygoose

Looks like your conversion has become compromised. And your FT3 is now too low, although your FT4 is too high. That could have something to do with your low vit D, which is below range. Are you supplementing that?

SPD1 profile image
SPD1 in reply to greygoose

Hello, thanks for your reply, i have just noted seaside susie's response to me and note ian has had a reaction to Actavis as well, seems a bit coincidental!! maybe that's the issue? Hmmm. i intend to supplement Vit D, are those readings typical of a Conversion issue then?

greygoose profile image
greygoose in reply to SPD1

T3 4.35 (range 3.1 - 6.8)

T4 22.3 (range 12 - 22)

Those results are typical of a conversion issue, yes. FT4 slightly over-range; FT3 not quite mid-range. They should be more or less equal.

There can be many reasons for poor conversion. Suboptimal nutrients is just one of them. Could be due to a low-calorie diet, or an infection/injury, low/high cortisol, long-term beta-blocker use, etc. etc. etc. Sometimes you never find the reason. But, if the nutrients are low, it's wise to raise them and see if it helps.

But, I don't think one of the reasons is a problem with levo. But maybe the reason you now feel unwell is a problem with Activis, and you've never really converted very well, but it didn't affect how you felt. Do you have other results for FT4 and FT3 tested at the same time?

SPD1 profile image
SPD1 in reply to greygoose

My Gp surgery will only test for TSH now and my previous one was in January this year prior to my latest Medichecks listed which was last week.

January 2019

TSH 0.01 (range 0.10 - 4.00)

I felt absolutely fine.

Blood drawn at 12.18pm not fasted.

January 2018

TSH 0.01 (range 0.10- 4.0)

T4 21.1 (range 9.5 - 22.0)

T3 4.7 (range 3.5 - 6.5)

I felt absolutely fine.

Blood drawn at 3.25pm not fasted.

January 2017

TSH 0.08 (range 10 - 4.00)

T4 20.9 (range 10 - 22.0

T3 5 (range 3.5 - 6.5)

I felt absolutely fine.

Blood drawn at 08.20am not fasted.

I wonder how many people on here actually use Actavis, the tremors, palpitations, twitching are all symptoms of overactive but is serious Hair fall?? i thought that was underactive?

bantam12 profile image
bantam12 in reply to SPD1

I have been on Actavis for years, I have just had a Medichecks result back and they are similare to yours, strangely my T3 used to be around 6 but last 2 tests its dropped to 4.3 and 4.7 and no obvious reason why.

SPD1 profile image
SPD1 in reply to bantam12

Hi there, how are you feeling though, have you opened any new Actavis lately or are you still on old batches, if tried new have you noticed any symptom changes? what is your dose? seems like the 100's might possibly have changed in potency as when i have tried the 50's on their own they seem to give less symptoms.

bantam12 profile image
bantam12 in reply to SPD1

My levels dropped some months ago so I don't think it's to do with my latest tabs which I got about a month ago, I take 125 and 150 twice a week.

I have symptoms of Adrenal Insufficiency and I'm waiting for tests to come back but I'm expecting them to be normal 😕

SPD1 profile image
SPD1 in reply to bantam12

Hi, i think it's unlikely to be the Actavis that;s causing all my symptoms, they seem very extreme, think there may be something more serious going on, neurologically perhaps. I'm not sure what Adrenal symptoms are so i will have a look.

bantam12 profile image
bantam12 in reply to SPD1

Have you had your calcium and parathyroid checked ? pth wouldn't normally be checked unless Calcium was high but worth doing if your GP will play ball !

SPD1 profile image
SPD1 in reply to bantam12

Hi, no not had them done, i am dreading seeing my GP as i just know she will probably ignore everything else and just zero straight in on wanting me to reduce dose, it's the easy option for them! after which i will then be on the road to returning to Zombie land :-(

bantam12 profile image
bantam12 in reply to SPD1

Yep been there myself but having proved them wrong in the past when they lowered my dose I now say No and thats that, no negotiation ! It's very difficult/impossible getting through to some of them, luckily I have a good lady doc now and we work things out together, just hope she doesn't leave !

SPD1 profile image
SPD1 in reply to bantam12

Hi,

i took the same stance last time with my GP in Jan this year at my last review but i was fine with no symptoms then, the problem is i am now presenting with what appears as Hyper even though it may not be and it's something else, i am assuming it's going to be difficult to argue i don't need to come down and once i'm down i would probably find it impossible to argue to go back up with my TSH and T4 where they are.

Can a GP actually refuse to prescribe if they are adamant a patient needs to reduce but the patient refuses? can the patient sign a disclaimer?

Yes you are lucky with your Doc.

greygoose profile image
greygoose in reply to SPD1

OK, so your conversion has got worse as your FT4 has got higher. That makes sense. Were you on the same dose for all of these tests?

SPD1 profile image
SPD1 in reply to greygoose

same dose, 150mcg a day, same brand Actavis, but felt fine, however on earlier blood tests i didnt realise that they should be fasting and taken first thing in the morning, maybe the different times and not fasting makes a bit of a difference? this site doesnt seem to link all converstions (unless it's me :-)) as i have been chatting to Ian as well regarding him experiencing differences with his Actavis being more potent as well, seems a bit coincidental. it does seem as though my symptoms are what you would expect from over active all of a sudden, apart from the dramatic hairfall, thought that is usually underactive.

greygoose profile image
greygoose in reply to SPD1

Being over-replaced can cause hair-loss, yes. So many symptoms can cross over from hypo to hyper.

I cannot see any sign of Ian on this thread - just me, Susie and bantam. Are you sure you're not chatting to him in a PM?

If there were a problem with Activis, one would expect your FT4 to drop, not rise. Yours has risen to the point that it is now converting to more rT3 than T3, which is why your FT3 has dropped. And it's the dropping of the T3 that is causing symptoms.

The question is: why is your FT4 rising? That's got nothing to do with the time of day the blood was drawn, not fasting. They only affect the TSH. The only thing that would affect your FT4 is not leaving a full 24 hours between your last dose of levo and the blood draw.

SPD1 profile image
SPD1 in reply to greygoose

Oh, im not sure if it's PM, it only looks a small rise to me but obviously you feel that it's significant, please excuse my naivety :-) hmmm i have no idea why it's rising. I wonder why things have changed so abruptly, i'm fine up until 8 weeks ago and then Bam! what do i do now, consider lowering dose or try another brand for longer, bit of a quandry. Have you come across this before?

greygoose profile image
greygoose in reply to SPD1

No, I haven't come across this before. But, there are so many variables. Strange things happen.

T4 20.9 (range 10 - 22.0) 90.83%

T3 5 (range 3.5 - 6.5) 50%

T4 21.1 (range 9.5 - 22.0) 92.%

T3 4.7 (range 3.5 - 6.5) 40%

T4 22.3 (range 12 - 22) 103%

T3 4.35 (range 3.1 - 6.8) 22.51%

I think the difference is clearer if you look at the differences between the percentages. The FT4 percentage has got higher, and the FT3 percentage lower.

So, what do you do? Try reducing the levo slightly and see if the FT3 comes up again. If you felt well on the first set of figures, that's the one to aim for. If that doesn't work, then maybe changing the brand of levo would help.

SPD1 profile image
SPD1 in reply to greygoose

that's very interesting indeed, thank you for pointing those figures out, i suppose though if the constituents have changed with Actavis they will have skewed my latest results? to be honest i felt really good on all the previous results apart from the last which is when i have reacted badly.

Are you on Levo on it's own? which brand? dose? have you always felt well on it or been through some varying times?

greygoose profile image
greygoose in reply to SPD1

I suppose, if something has been changed in the composition of the pill, you could be absorbing more now. So, you only want to reduce a little. Perhaps by 25 mcg every other day, or something.

I've never been well on levo. Nor on NDT. I take T3 only. :)

SPD1 profile image
SPD1 in reply to greygoose

T3 only, that's interesting, are you prescribed or source yourself? I bought myself a Tablet cutter last week from the Chemist to practice as i thought i may have to try reducing, it's useless though, one of those blue plastic things, i have tried a few times but it's not a clean cut, the tablets crumble a little which means the portions will never be the same or accurate. Actavis only do 100 and 50 tablets, maybe i could try 150 one night and 100 the next.

greygoose profile image
greygoose in reply to SPD1

I source myself.

It doesn't matter if the portions aren't accurate. It's T4, basically a storage hormone, so it will even itself out. As long as you lick up the crumbs. lol

SPD1 profile image
SPD1 in reply to greygoose

hahaha, crumb licking tickled me :-)

SPD1 profile image
SPD1 in reply to SPD1

Good morning,

i notice on one of your replies to someone else on here about diet that artificial sweeteners are a No No, i use them daily with on average 3 cups of coffee, what's the problem with using them? i was using brown granulated sugar before, am i better going back to that? (i'm on Levo) many thanks.

greygoose profile image
greygoose in reply to SPD1

Yes, that's right. Artificial sweeteners are bad for everyone, actually, but especially for hypos.

greenmedinfo.com/blog/top-5...

That is just one article. I'm pretty sure I have others, somewhere. I'll have to look. This one only mentions Splenda, but they're all pretty bad.

So, whilst sugar is bad, artificial sweeteners are even worse. The best form of real sugar is brown sugar, so you would be better going back to that.

SPD1 profile image
SPD1 in reply to greygoose

Hi, thanks for that link, WOW, that is concerning, those Sweetex are going straight in the bin.

greygoose profile image
greygoose in reply to SPD1

I should think so too! :) How long have you been taking them?

SPD1 profile image
SPD1 in reply to SPD1

Hello,

have i said something wrong or out of place? i apologise if i have.

SPD1 profile image
SPD1 in reply to greygoose

Good morning, i appear to be a numpty as i can't see how i came away from the conversation that was linked in with you and Susie and bantam and have gone to private messaging which this is?

Well last night i thought i would try reducing from 150 to 100, i know, should have chopped a pill to 125, not a good move but a bit worrying that considering it was a reduction i have not slept a wink at all, have had transient raised heart beats, way more muscle twitching, lower back ache, joint aches in feet and hands, leg weakness, slight numbness in right arm and feet until i move them about, slight balance issue, blurred vision and the tremors remain. I haven't altered my dose for years but i remember way back when i was first trying to find the right dose that i reacted immediately to any increase or reduction, it's amazing how swiftly i react because i get the impression that for most people Levo doesnt affect them that quickly? Not sure what to do now, i think the Actavis brand is suspect so maybe get another brand and go back to 150 for a few days and then try reducing to 125? I know Mercury Pharma do 25mcg tablets. The issue is of course that having been with Actavis for years and got used to it i may well not react particularly well to MP, have to try i suppose :-(

greygoose profile image
greygoose in reply to SPD1

My most sincere apologies. I completely missed all of these last replies! No, you didn't say anything wrong, but you did reply to yourself, so I wasn't notified of your response. It happens. It's also very easy to miss are response early morning, when I get up and find 15/20 responses to things I've said the day before. The system on this site is far from perfect, I'm afraid, and obviously you fell through the gaps. I'm so sorry. I will carefully read all you've said above, and get back to you.

But, reading through this thread, one important question sticks out that got missed: you said that for the latest test, you took the blood about 11 am, having had your last dose of levo at 11 pm the day before. So, the question is: is that how you always do your tests? Do you always leave only 12 hours? Because that would have an effect on your FT4. And, it's not so much the length of time that has been left - although 12 hours will give you a higher FT4 than 24 hours - but always doing it the same way that is important. If sometimes you left 12 hours, sometimes 15, etc. we cannot compare your results. And, it is the comparison that is important - certainly in this case.

Also, what have you been doing since? This post was a month ago. Since then did you try reducing your dose? Did you try another brand of levo? Did you change anything between then and now? :)

SPD1 profile image
SPD1 in reply to greygoose

It's me being a numpty and not quite having got the hang of the "Reply" system at first :-) thank you so much for taking the time to re read my story so far.

Before i came on this site i did not realise the importance of consistency of time of blood draw and that it needs to be fasted and 24hrs needs to have elapsed.

My recent medichecks i posted on here was fasted and taken at 11.15am which was basically 12 hours after taking medication at 11pm the night before.

My GP surgery no longer tests for T4 and T3 so i only have 2017 and 2018 results with those but again they were not fasted and there was not a 24 hour gap between medication and blood draw so i understand completely what you are saying about comparison.

I tried a different brand for around 6 days, Mercury Pharma, symptoms seemed the same but then i reverted to Actavis because the blurred vision seemed worse on MP but i think maybe i didnt give them long enough, but i do have a super sensitive system and respond really quickly to any change.

I tried reducing for 2 nights, 150 down to 100, which was far to much obviously and i felt dreadful the next day and then 150 down to 125 and felt lousy so then i reverted to the usual 150 but i appreciate i may have needed to try for longer on a reduced dose, but it just shows how sensitive i am that i immediately respond negatively.

I havent changed anything at all really, but again what is absolutely bizarre is last week for 2 days running the tremors and symptoms seemed to virtually disappear during the day but the 3rd day they had returned as per usual, i am also noticing as i write now that once again the symptoms have died right down, it's truly weird the way they are coming and going.

Thanks..

greygoose profile image
greygoose in reply to SPD1

I tried a different brand for around 6 days

No, you didn't give it long enough. I don't know exactly how long it takes the fillers to leave the system, but I doubt it was long enough for a complete turn-around.

last week for 2 days running the tremors and symptoms seemed to virtually disappear during the day but the 3rd day they had returned as per usual

Well, given that you are still on the same dose and the same brand, that would rather suggest that it's nothing to do with the levo, don't you think? Have you had any investigations into any other possible cause? Just because they seem like hypo/hyper symptoms doesn't mean they are. Thyroid symptoms are none specific, and any one of them could be due to a lot of other things.

SPD1 profile image
SPD1 in reply to greygoose

Hmmm , this is interesting, someone else has just PM me to say they have been on Actavis for a long time and have developed blurred vision, dramatic hair loss and some shaking/tremors occasionally in their legs and it started around 3 months ago Coincidence??? i think not!

I have wondered if its something else, my GP has organised a Neurologist appointment but my gut instinct is the tremors point to neuro issue but i think i am presenting neuro symptoms but i don't think its a neuro issue, besides a neuro issue would not cause dramatic hair loss and eyebrow thinning, joint aches etc.

SPD1 profile image
SPD1 in reply to SPD1

WOW, the other individual has just PM me again who is on Actavis and has just mentioned that their leg issues die down later in the day as they approach taking their next medication and then after taking Levo the leg issues return, that is TOO much of a coincidence surely?

thanks.

greygoose profile image
greygoose in reply to SPD1

No, a neuro problem would not cause hair loss directly, but it could be the same cause for the two problems.

I imagine the person that PMed you is the one whom I just linked to your threads. She posted earlier about similar problems. So, it appears that you are both right, and the problem is the Activis. I should say, you really need to get onto the manufacturers about this.

SPD1 profile image
SPD1 in reply to greygoose

Hi,

thank you for linking us, i have spoken to Actavis 3 times, senior personnel in their quality control departments, they have assured me verbally and also written to me confirming there have been NO alterations to their constituents, but they did say they outsource their fillers but they are treble checked, Hmmmmmm!

I have popped a new post on here just asking the question if anyone has noticed anything different with Actavis, however small and may have put down to something else just to see if there is a common link.

greygoose profile image
greygoose in reply to SPD1

That's good. The more people you can find who are having a problem, the stronger your case.

SPD1 profile image
SPD1 in reply to greygoose

:-) thanks

greygoose profile image
greygoose in reply to SPD1

You didn’t come away from the conversation, it’s just that no-one was notified that you’d replies, and/or missed your replies. It wasn’t intentional on anyone’s part. Sorry.

So, you reduced from 150 to 100 and had a bad night. Your right. That does seem amazing because the tablet probably wouldn’t even have left your stomach by the time you went to bed. I might just about accept that an increase in dose might have had such a rapid response – although that would be stretching credulity to the limit because it would take about 7 days to have any effect – but a reduction would take even longer to make itself felt. Not only does the pill have to get from your stomach to the gut – after the stomach acid has removed the sodium molecule the hormone is attacked to – but then it has to get through the gut wall, into the blood. It then has to have one atom of iodine removed to make it T3 before it becomes active, and then has to get into the body cells to have any effect. So, whilst that could possibly be speeded up in a situation where the dose is increased – although extremely unlikely – I don’t see how it could have the same rapid reaction with a reduction. We’re talking about hormones, here, not aspirin. I think it was either coincidence, or a sprinkling of over-thinking going on there.

The issue is of course that having been with Actavis for years and got used to it i may well not react particularly well to MP

Well, that depends. If it had been the fillers in the Activis tablet that were disagreeing with you, it would be a mighty relief for you system to get rid of them. I’m not sure getting used to things has anything to do with thyroid hormone replacement therapy. And, in any case, if you’re not well on the Activis, Changing brand has to be a positive step.

So, what did you do? Apparently, you’re still suffering the same symptoms, so are you still on the same brand and dose? From your latest post, it sounds as if you haven’t tried changing anything. Have you at least started supplementing vit D, with cofactors?

SPD1 profile image
SPD1 in reply to greygoose

No need to apologise, just me being a muppet :-)

Honestly i am soo sensitive that if i occasionally forget to take my dose at 11.30pm at night if i wake in the middle of the night i can feel muscles twitching which makes me realise i have forgotten to take, it really does affect me that quickly, i know that defies all logic but its just the way it is with my system.

I'm going to change to Mercury Pharma completely and stick with them and see what happens over a longer period.

I have started supplementing Vit D with K2 from Nutri Advanced :-)

Thank you so much for taking the time to try and help, it really is Very much appreciated.

Steve.

SPD1 profile image
SPD1 in reply to greygoose

Hi, how long do you think it will probably take for the Actavis to clear my system if that's the issue once i start taking a different brand?

I do know there are people on here Like Bantam and her partner who have had no issues regarding Actavis

I have some Mercury Pharma i can take straightaway from tonight. I suppose only by giving MP a decent run will i establish whether my issues are down solely to Actavis, i think maybe some are but not all, Hmmmm.

The other possible issue is that because im so sensitive i may actually react to something in the MP tablets of course, but will have to try anyway.

The problem with my fresh post about Actavis and issues is the posts move down the front page very quickly as they are replaced by new posts and perhaps alot of people who may be on Actavis may not see.

Thanks.

greygoose profile image
greygoose in reply to SPD1

The hormone itself has a half-life of 7 days, but I'm assuming it's not the hormone that is the problem. I don't know how long the fillers will take to clear.

Actually, the post moving down the list is not so much of a problem as you suppose. People, whenever they come on here, tend to start at the top of the list and work down to see all those they haven't already seen. So, eventually they would get to your post. I know that when I've posted on here, people continue to reply for days afterwards. But, you'll never be able to reach all those on Activis, no matter how it's done. You could try reposting it from time to time.

I don't think that going on to Teva would be a solution. Many, many people react badly to Teva.

SPD1 profile image
SPD1 in reply to greygoose

Hi,

thanks for that :-)

Yes i will steer well clear of Teva, soooo many bad reports about it..

Purpledreamer profile image
Purpledreamer in reply to SPD1

Teva do a 12.5 dose.

SPD1 profile image
SPD1 in reply to Purpledreamer

Thank you, duly noted :-)

engo profile image
engo

Hi

As Bantam mentions - it would be worth having your calcium and PTH checked. High Calcium can cause all the symptoms you mention but not sure about hair loss. Also hyperparathyroidism causes vitamin deficiency in majority of cases.

Hope you can get to the bottom of the problem.

SPD1 profile image
SPD1 in reply to engo

Hello, have you come across arm and leg tremors before then? i know arm tremors are part of thyroidism, usually Hyper i think but not leg tremors or at least i haven't come across other people experiencing leg tremors, i have been reading today that Diabetes can cause numbness and tremors, B12 is quite a culprit as well, i wil have to try to get my GP to check Calcium and PTH..thanks

engo profile image
engo

Hi

Arm and leg tremors can be associated with hyperparathyroidism (Glands that control calcium). I currently have high calcium with unsuppressed PTH and having tests etc. I have had a couple of bouts of severe tremors but not sure if that was due to my blood electrolytes getting out of balance.

SPD1 profile image
SPD1 in reply to engo

Hello,

may i ask you the same as i did Twitchytoes, have you had the tremors long? come on out of the blue? arms and legs?

Mine are fairly constant from morning right through until evening but they do come and go at stages through the day and can lessen in intensity as well, strangely though they do seem to be at their weakest as i progress through the evening towards bedtime and towards taking my Levo dose which i normally take around 11.30pm but the slight numbness in feet and right forearm seem to get worse in the evening when i am relaxing lying on the couch, but that's probably because i am static.

Did you have to request calcium and PTH tests or is that something your Doctor suggested?

engo profile image
engo in reply to SPD1

I have only had 3 or 4 episodes of tremors - had them in my arms and legs. They were very bad - I do have frequent muscle spasms in arms and legs. When I have them they come on all of a sudden. I have had a whole range of symptoms including nausea, lightheadedness, pain/weird feelings in tendons/joints. My worst symptoms were heart palpatations - that's when I found out I had high calcium after visiting A & E - later also I was admitted to hospital and they tested my PTH, which was normal but should have been low due to high calcium in blood. Also test results showed low vitamin D.

I have had blood tests for thyroid function - vitamins, hormones ok but I do have 1 of my antibodies high.

Scan on neck showed nodules on thyroid - consultant says my thyroid is functioning normally. Had tests on adrenaline and noadrenaline - all fine.

I am being investigated for Hyperapathyroidism. My consultant is not convinced my palpatations are connected with high calcium but this seems to be well documented as a possible symptom. One other symptom that does not seem to be on list for hyperapathyroidism is a strange/weird feeling in arms (not numb just weird).

You should be able to get a blood test for calcium from your doctor - I would just ask for the calcium one for starters and only check out PTH if calcium is high.

SPD1 profile image
SPD1 in reply to engo

Hi,

yes i know what you mean about weird feeling in arm, not quite numb but not right, i have had various transient pain in joints in hands and feet, i have woken up this morning with what feels like swollen lips as well as all the other symptoms and it feels strange when i try to smile, it's bizarre, i think there is more going on here than just thyroid, i will have to go to my Doctors tomorrow but dreading that they just zero in on my TSH and maybe miss something else which is the main culprit but i will have to insist on all the important blood tests :-(

engo profile image
engo in reply to SPD1

Hi

Hope all goes well with your doctors visit. Just insist on the calcium as if that is in normal range then its almost certainly not parathyroids - you can always have PTH later. Calcium is just part of a general health blood test.

Please let me know how you get on - would be interesting to know as my investigations are still ongoing.

SPD1 profile image
SPD1 in reply to engo

Thank you, i have my fingers crossed that my GP or whichever one i see (might take 2 weeks or so to be able to see my usual one) has an open mind and can see beyond just Thyroid!

Forgive me, is the calcium part of a usual Full blood test or do you have to specifically request it?

I will let you know and if you could update me on yourself as well please.

I feel very isolated and alone indeed with this problem as i have no immediate family or support and i can't discuss with friends as they just have no idea about thyroidism and don't understand at all, they seem to think you just go to the Doctor and they will sort, if only it were that simple! plus i don't want to keep burdening them with my problem.

I have only just joined this forum and have found it a real eye opener and very informative, everyone seem's so much more knowledgeable than myself but it's terrific to be able to view and share in everyone else's story and journey and people seem so helpful and supportive of one another which is fantastic so it's a very welcome support lifeline indeed :-)

engo profile image
engo in reply to SPD1

Just to be sure I would mention your concerns and ask for your calcium level to be checked.

By the way - the thinning hair can be a symptom of parathyroid glands (calcium glands). Symptoms seem to vary widely from person to person.

Hope all goes well and I'll keep in touch.

SPD1 profile image
SPD1 in reply to engo

many thanks, chat soon :-)

I have a similar problem with tremor and shakes. My neurologist blames some ridiculous thing she calls functional neurological overlay disorder. I also have Sjögren’s and other connective tissue problems with small fibre neuropathy.

My TSH is similarly suppressed and GPs are always trying to tell me to drop from 125mcg to 100 but so far I’ve persuaded then this would be a bad idea because I have done this before and it’s awful.

The best dosage for me is 150mcg every other day and I just suit myself and pretend I’ve lost packs of 25mcg when I order repeats online!

I don’t think my tremors and twitches etc are related to Hashis I think they are part of my Sjögren’s. Could you maybe have other autoimmune diseases perhaps? Might be worth asking GP for autoimmune antibody tests etc?

SPD1 profile image
SPD1 in reply to

Hello,

could you expand on your shakes and tremors please, do you get them in arms and legs? are they constant or do they come and go during the day and evening? How long have you had them? did they jut start out of the blue or did you notice them come on gradually? any other similar symptoms to me with the muscle twitching, slight numbness in arms or legs at all?

I will have to go to my GP on Monday providing i can get an appointment, i can;t leave it any longer i need to be checked over and i will have to try and ensure that they do all the appropriate blood tests. Yes i am wondering if it's something else and is affecting the thyroid as well, problem is i don't have any real faith in them sorting it out and fear going back to being a zombie on reduced dosage.

I am assuming it's going to be very difficult to try and persuade my GP to leave me at the same dose when i am presenting with Hyper as i just know that will be where she will zero in on as when i had my last blood test in Jan 2019 and it came back with TSH at 0.01 she wanted me to come down on dose.

I just find it bizarre that i have been well for donkeys years on the same brand and dose and then BAM, no steady decline at all, weird.

SPD1 profile image
SPD1 in reply to

Forgot to ask you about your muscle twitches, all over? arms, legs, torso? different times of the day?

I have noticed in the past that if i have accidently forgotten to take my daily Levo that i got muscle twitches within a few hours of missing it, i'm not sure if muscle twitching is part of Hyper and Hypo, i know Hairloss can be but i think it tends to be more with Hypo, i have had occasional shedding in the past when i was attempting to find the right dose when i first started on Levo but this is something else, it's Alarming! to the extent that unless i can sort whatever is going on i fear losing all the hair on top of my head which is ridiculous given i've always been very fortunate and had a really good and thick head of hair.

in reply to SPD1

I’d say your low B12 could likely be the problem. Are you treated at all for this because yours is low and B12 deficiency/ pernicious anaemia notoriously causes neurological symptoms? Mine is always resoundingly normal ie 700 ish despite not taking any B12 supplements for a year or more.

They shouldn’t make you change your Levothyroxine dose until they have trialled you on B12 injections and then retested. This is such a likely cause of your tremors that I would be pretty fierce about the low blood test result with your GP on Monday.

Otherwise I think our bodies do just change as we age and your autoimmune thyroid antibodies are very normal so perhaps you have tipped towards being over treated now - I don’t know what others here have said as not read them yet. It’s such a personal thing to my mind and I’m terrified of having my dose lowered now. If I’m ever overmedicated this always manifests in palpitations and anxiety with me, not tremors and twitches. These relate to other active autoimmune disease and UTIs most often in my case.

My tremors are both internal and external. The internal one mainly affects me when I’m not well or flaring with Sjögren’s ie have worsening constipation, dry eyes, fatigue and neuropathic pain in arms and legs and UTIs or other infections. My arms and hands are presently the area most affected and I shake uncontrollably internally all over when I wake or am woken. It resolves after a few minutes usually.

The way the other tremor manifests is everywhere too. I only know about it because I couldn’t work out why my photos are always out of focus these days and why I struggle more, as an artist, to draw straight lines.

Also I can’t stand still for longer than a few minutes without my legs shaking so I have to use a perching stick now. This is called orthostatic tremor - cause unknown but I suspect it’s Sjögren’s related plus I have significant degenerative disc disease.

The other reason I noticed this was because my neurologist wrote that I have a distractible tremor?! She blamed a conversion disorder overlaying my autoimmune diseases whereas I blame fatigue and the small fibre neuropathy (which she accepts I have as part of Sjögren’s).

I wrote back to her latest letter pointing out that the distractible tremor is probably fatigue because when she makes me hold out my arms I can make the effort to stop my hands shaking if I try. The point is that I don’t try hard because I’m always tired and holding my arms up and out is very tiring. As the fatigue is due to Sjögren’s viscocity it’s unlikely to change and nor should it be classed as functional/ psychosomatic. Same applies to all the twitching which I know she feels is Fibro/ functional too. I find this terribly provoking! It’s because her tests show it’s not Parkinson’s or MS and so does EMG. But I think mine still could be Parkinson’s or MS in very early stages.

Also she didn’t seem to pick up on the very fine tremor which is constant now and affects me everywhere. I haven’t told her about the random vibrating around my body but I will. All went away with a big steroid injection a few months ago but is coming back now. Proof to me that muscle twitching, vibrations and tremors are part of my autoimmune inflammatory disease flare ups. But also my son’s have similar tremors and I think there’s a genetic component too for me.

SeasideSusie profile image
SeasideSusieRemembering in reply to

Hidden

I’d say your low B12 could likely be the problem.

His B12 is not low. Look at the range.

Vitamin B12 (Active) 135 (range 37.5 - 188)

This is the Active B12 test, it's a different test from Total B12 test which has a much wider range as it's measuring total B12 - bound and unbound/active (free). The Active B12 test only measures the unbound/free B12 which is available to be taken up by the cells.

in reply to SeasideSusie

Oops -sorry - I replied with my eye drops newly in and only able to decipher the basic numbers. You are right of course re this business of serum B12 v active. I keep asking for tests but not getting the results from the hospital. I’m having my zinc levels checked at GP practice on Tuesday re ongoing sour, nasty taste so will ask for copies as full panel was done inc in April. I keep requesting trial of injections regardless of blood work but so far I’m not getting anywhere with my neurologist who is determined that I just need CBT and that my neuro symptoms are multi faceted. But this doesn’t include B12 malabsorption despite gastroscopy confirmed gastritis and low stomach acid and autoimmune diseases 🙄🤷🏼‍♀️

SPD1 profile image
SPD1

Hi,

I am not treating my B12 but have been taking a daily B Complex on and off for a few years along with Fish Oil, Esential fatty Acid, Magnesium and Zinc and copper as a general support, i wasnt told to do this just did it off my own back, they are a good quality product and all food state, however i think it is probably just a maintenance level overall as i have not specifically targeted specific Vitamin deficiencies as i wasn't sure if i had any to be honest as i have not tested for them which i probably should have done.

Why do you you feel my B12 is low given it's 135 (range 37.5 - 188) it was the "active" test i know the NHS test is a lot wider but i'm not sure about the difference between active and not active. Medichecks on pointed out i was low on Vit D 42.6 (range 50 - 175) i stopped taking my supplements soon after the tremors and symptoms started because i think they were exaggerating the symptoms, could have been coincidence though. you think i should supplement B12 specifically along with Vit D ?? i think a deficiency in both those can cause hair loss as well.

Did you stop taking your B12 for a particular reason if a deficiency can cause tremors? tremors?

I also have tremors and shudder around my neck area when i wake up and then the shuddering stops after about 30-45 seconds.

About 4 years ago i had a really bad cold and about 2 weeks later i developed Arthritis symptoms in hands, wrists, and feet, i also had sjogrens symptoms, never, ever had any issues with any of those before at all, GP sent me to see an an Arthritic specialist who did various tests and said he didn't think it was arthritis or sjogrens but apparently a very heavy cold or flu/virus can actually leave someone with Arthritic symptoms and sjogrens for a while and then it goes away, it Did! fingers crossed it doesn't return.

I'm wondering if there is another issue that is affecting my thyroid and making it appear as though im over active. but i am extremely worried that i'm told to reduce dose before they get to the bottom of the issue and then it turns out not to be the level of Levo after all but then i have a major problem trying to get my GP to raise Levo dose again

Problem is i have got sooo much else going on in my life at the moment and this is the very last thing i need :-(

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

SPD1

but i'm not sure about the difference between active and not active.

I explained this to you yesterday in my reply above

Medichecks do a different B12 test which is why there's a different range. Your GP does a serum Total B12 test which measures, as you'd expect, the total amount of B12 - bound and unbound/active. Medichecks test is Active B12 which just measures the most important part - the active part which is the B12 that is free and available to be taken up by the cells. It's a better test. Your result is really good.

SPD1 profile image
SPD1

Hi Susie,

you did indeed point that out, my memory is not the best it's ever been given my predicament. i was just having a good look at vitamin deficiency in general and most of the symptoms i am displaying are actually also quoted as being a deficiency in B12, must be a coincidence.

I am assuming you have noticed no difference with the Actavis ?

To be honest i think my symptoms are too extreme for it to be just down to a slight change if any in the Actavis constituents.

Thanks.

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

I am assuming you have noticed no difference with the Actavis ?

No, nothing yet. 2 days now on the new box of 100s, I think I picked batch number 1493 (it's upstairs and I'm downstairs).

SPD1 profile image
SPD1 in reply to SeasideSusie

Just checked, that is a batch i tried for 2 days and got the symptoms i have now, see how it goes..thanks.

SPD1 profile image
SPD1 in reply to SeasideSusie

I am going to top up on Magnesium as well as other Vits and was just wondering if you have a view on Epsom salt baths and whether or not the Mag is better or more swiftly absorbed in a bath rather than popping a pill? thanks.

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

I've not tried Epsom salt baths so can't really give an opinion.

SPD1 profile image
SPD1 in reply to SeasideSusie

Ok, thank you.

SPD1 profile image
SPD1 in reply to SeasideSusie

Hi Susie,

i'm assuming no adverse reaction your end to the other Actavis?

SeasideSusie profile image
SeasideSusieRemembering in reply to SeasideSusie

No. Day 5 today and I've not experienced any adverse reactions. I will continue with this packet though just in case, things tend to happen very slowly with me!!

SPD1 profile image
SPD1 in reply to SeasideSusie

I'm not so sure there is an issue with Actavis then, i have tried Mercury Pharma Levo for the last 5 days just to see and i still have the symptoms albeit slightly less in intensity.

I had an appointment with a new GP this morning, she was excellent, listened intently regarding my symptoms, has requested a full blood screen, she mentioned that thyroid can cause quite a few of the issues so i think i'm going to have an issue with her requesting i try reducing dose at some stage after bloods are back because i expect TSH to be as low as usual and they only measure TSH, she has also referred me to see a neurologist because of the type of symptoms, The swiftest early morning blood test i can get is 20th Aug! that's 7.50am which obviously i need fasting and drop off the previous day's Levo dose but it's frustrating and slightly worrying that i can't get the blood checked until then just in case there is something sinister going on, i can get an earlier appointment than 20th but that will be later in the day and will compromise my TSH result. Oh the joys of having a thyroid problem!

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

Did you give any more thought to testing adrenals as mentioned above?

SPD1 profile image
SPD1 in reply to SeasideSusie

yes i did, i definitely need to get them done, a good friend of mine asked me if i had a black eye last week and when i have taken a little more notice of my face i can see that i have darker rings around my eyes than usual, i have always been slightly dark in that area but it does seem to be more noticeable than usual, i think that is a sign of possible adrenal fatigue?

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

Yes, mentioned above that it can be due to adrenals.

SPD1 profile image
SPD1 in reply to SeasideSusie

thanks Susie.

SPD1 profile image
SPD1 in reply to SeasideSusie

Good evening Susie,

i had an appointment with my Doctor last week regarding all my symptoms, i am to have a full blood screen and she has also referred me to a neurologist because of the arm and leg tremors, the first available early morning blood draw slot is actually next Monday at 7.50am however i take my Levothyroxine every night around 11.30pm so that is not going to leave 24hrs as is advised, am i best just completely missing the previous evening medication which will then leave a gap of approx 32hrs from the Saturday night until the Monday morning ? i assume it will give a false higher TSH reading which is what i want as i don't want to be forced to reduce dose, i will probably feel dreadful but worth it not to be in the position of being put under reduction pressure.

Actually the test i had done with medichecks and posted on here is not a strictly accurate one i suppose as i took Levo at 11.30pm and had Blood drawn at 11.15am the following morning so it will not be giving an accurate picture will it, it;s crucial to have at least 24hrs between?

many thanks.

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

am i best just completely missing the previous evening medication which will then leave a gap of approx 32hrs from the Saturday night until the Monday morning ? i assume it will give a false higher TSH reading which is what i want as i don't want to be forced to reduce dose, i will probably feel dreadful but worth it not to be in the position of being put under reduction pressure.

TSH doesn't react that quickly, there's nothing you can do to falsely elevate your TSH in a short time frame. When I saw an endo who didn't like my suppressed TSH, he reduced my dose by 25mcg and it took 3 months for my TSH to increase from 0.02 to 0.4

The timing of taking your Levo dose affects your FT4 result. It peaks in the blood 2-4 hours after ingestion. If you take it too close to your blood draw you get a false high T4, to far away and you get a false low. So if you left 32 hours you'd get a false low FT4 but no significant change in your TSH.

As most doctors use the TSH result to adjust dose (which is, of course, wrong) then to get the highest TSH, as mentioned above, we have our blood draw no later than 9am, we fast overnight from evening meal/supper, and we drink only water before the blood draw as coffee affects TSH.

To get your normal circulating thyroid hormone levels (FT4 and FT3), adjust time of taking Levo so that last dose is 24 hours before blood draw. So if your blood draw is Monday morning, what I would do is take Friday's dose as normal at 11.30pm, take Saturday's dose an hour before lunch or two hours after, and take Sunday's dose on rising then wait an hour before breakfast - that should give you about the 24 hour gap before the blood draw at 7.50am on Monday. Then Monday go back to taking it at night.

SPD1 profile image
SPD1 in reply to SeasideSusie

So sorry i forgot to mention, my Surgery no longer measures T3 or T4 so it would be purely TSH reading, so just apply the same as above anyway ? or would missing Saturday 11.30pm and setting alarm for 7.50am Sunday to take Levo work? mind you i would then have to fast from Sunday evening? or am i misunderstanding, sorry.

I realise now that the Medichecks bloods i had done and posted on here are not strictly accurate then as i took Levo at 11.30pm and had blood drawn fasted at 11.15am following morning, which means it will have shown a false T4 and T3?

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

If all they are testing is TSH then timing of Levo is not important at all, the timing of your dose of Levo only affects the FT4 result as explained. If testing TSH only then just take your Levo as normal.

Just have your normal evening meal/supper on Sunday night then no food until after the blood draw. Our member Diogenes - scientist, thyroid researcher and advisor to ThyroidUK - has confirmed that eating lowers TSH. And water only to drink on Monday morning before the blood draw as coffee affects TSH.

I realise now that the Medichecks bloods i had done and posted on here are not strictly accurate then as i took Levo at 11.30pm and had blood drawn fasted at 11.15am following morning, which means it will have shown a false T4 and T3?

Yes, I have explained how the timing of the dose affects the FT4 levels. Your FT4 level will be higher than it would if you'd left 24 hours, and it's 24 hours gap that is supposed to give the normal circulating hormone level.

SPD1 profile image
SPD1 in reply to SeasideSusie

Thanks very much indeed for your help with that.

SPD1 profile image
SPD1 in reply to SeasideSusie

Hi Susie,

i had my blood test on Monday morning, Doctor phoned me at 4 pm today saying everything is fine, kidney, liver, sugars, B12, ferritin, calcium etc, no problems apart from My TSH which she didnt tell me the specific reading but it's been 0.01 the last 3 tests, i will collect a copy tomorrow. That's a pretty sharp response to be phoning me like that, She argued that i need to reduce as she feels i am definitely over treated and have been for the last couple of years, even though my TSH has been historically below 1 for a long time and i have felt good, she phoned with the sole purpose of suggesting i reduce immediately, i argued my case against it and she said that the tremors are a definite indicator of very possibly over treatment, anyway, she said she would confer with a colleague and come back to me so you can guess whats going to happen, they will concur i need to reduce, i am going to find it difficult to argue against with the symptoms, have you ever known anyone who has been on Levothyroxine only long term that has ever needed to reduce there dose because all of a sudden they become over active? I assume you have been fine on Actavis?

Thanks.

SeasideSusie profile image
SeasideSusieRemembering in reply to SPD1

have you ever known anyone who has been on Levothyroxine only long term that has ever needed to reduce there dose because all of a sudden they become over active?

If you are hypo then you can't become overactive, it's not possible. You can be overmedicated but that's not overactive.

The only other reason you could have "hyper" symptoms is if you have Hashi's and you experience a Hashi hyper swing.

I was fine on Levo for over 20 years then suddenly my GP starts reducing my dose because my TSH was suppressed and my FT4 over range and I've had a constant battle since 2000 about this with 2 different GPs and an endo. In the end I did my own investigations and found nutrient deficiencies, adrenal problem and poor conversion. Sorted it myself. I still have suppressed TSH which my GP freaks out about but I have an ally in the Advanced Nurse Practioner who accepts that if FT4 and FT3 are in range then with long-term hypo it's not unexpected that a suppressed TSH may not come back into range.

I have been taking Actavis for many, many years with no problems. My pharmacy bag comes with a label on which says "Actavis Levothyroxine only!"

SPD1 profile image
SPD1 in reply to SeasideSusie

Thanks for pointing that out about over active and over medicated. i don't think i will win this battle with my GP because of the symptoms, but they seem quite extreme and i haven't read of anyone having similar in terms of the leg tremors and weakness, arms yes but not legs, all the symptoms point to a possible swing but i am not sure how i would identify that, TPO and TGO are very low on my results above. It's becoming ridiculous, in addition i am now all of a sudden dropping off to sleep on the settee at 8.30pm and having to splash my face with cold water several times to stay awake! All my GP is interested in is TSH, Totally blinkered, not sure of best course of action now, just waiting for her next call today at some stage to inform me of her decision once conferring with a colleague, it's not going to be good. It just seems bizarre that i was absolutely fine for years on 150mcg daily and have been right up until 9 weeks ago and then BAM, doesnt make any sense at all. :-(

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