Have been off the levo 3 weeks now due to side effects, been on them 7 years, only had problems since october with the teva levo new formulation, so not entirely sure whether its the new formulation that doesnt agree with me and sent my bloods haywire or i was on too much that sent them haywire or something else..
Seeing an endo on the nhs in about 3 weeks..
Please someone who really understands the bloods results help me!
Kez1984,
FT3 below range means you need more Levothyroxine. Were TSH and FT4 measured at the same time? If Teva didn't suit you could try Mercury Pharma, Actavis (also known as Almus) or Wockhardt. Tell your pharmacist you won't accept Teva and if s/he can't guarantee an alternative make take your prescription elsewhere.
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Hi no the t4 and tsh were measured on the 24/2/16 and the t3 was measured after on the 3/3/16 so not long after, i personally requested the t3 from my doctor much to her disapproval!.. so as for the bad anxiety and reslessness too much energy couldnt sleep i experienced when on the 100mcg over xmas was that due to too much levo or maybe the new formula from teva do u think?
Bearing in mind i took one 50mcg of the teva new formula after doctors orders and ended up in a&e with palpatations chest pains uncontrollable shakes sweats..
Also bearing in mind i have never suffered with anxiety before and have had no triggers for it like deaths life events im 32...
Kez1984,
I can't guess whether your symptoms were due to under or over medication or Teva but if your TSH has risen to >100 in 3 weeks since you stopped taking Teva it's possible you were under medicated on 100mcg which could make you very anxious.
The reaction you had to 50mcg Teva suggests an adverse reaction so try one of the other brands I suggested, perhaps Actavis which doesn't have acacia powder that Teva and Mercury Pharma have and which does seem to cause adverse reactions in some people.
Sorry meant to put 2017 this year not last year!..
It says on the leaflet of the levo that when u are on too much it will cause anxiety etc.. and when my doctor reduced it to 75mcg i must admit the symptoms did calm down but i decided trial stop them altogether to see if they was the cause of the symptoms which confirmed this when i stopped them..
I was given another prescription for levo 50mcg from my doctor and she told me to find a chemist that had the actavis brand which i have found and have in my cupboard, but until i see the endo or maybe the doctor next week about the results i dare not take them especially with my not having any hypo symptoms yet...
Kez1984,
I find it very hard to believe you are not yet symptomatic with such low FT4 and FT3 and high TSH. If you are truly asymptomatic I don't think that is likely to continue much longer. My advice is to start taking the 50mcg now. Things can only get worse without replacement.
But my tsh was creeping higher whilst i was on them too? This is why my doctor referred me to the endo in the first place.. and also because she was confused why my t4 and tsh were both high at the same time?..
Kez1984,
How high was your FT4?
TSH was rising because you hadn't been taking Levothyroxine long enough and because dose wasn't high enough.
Iv been on it 7 years... Ft4 was just over the range and tsh was double what it should be whilst taking them and the doctor reduced the 100mcg to 75mcg when she saw both was high, and to be honest any higher than 100mcg i would have been shockingly worse as was already bouncing off the walls already...
Kez1984,
GP is right to refer you to endo to investigate why FT4 and TSH were high but reducing dose was probably a mistake.
Clutter has responded too.
Once on thyroid hormones you shouldn't stop until you have switched to another.
The fact that your bloods are 'out of range' you are desperately in need of hormones. Without them, you can cause damage to your heart or other organs.
I can well understand why you stopped but you have to have an alternative, i.e. the addition of T3 to T4 or NDT. Or try another make of levothyroxine.
If you cannot tolerate one brand of NDT, why not ask to be switched to another brand of T4?! Like others have already said, if your own thyroid gland is not functioning optimally, you depend on thyroid hormone replacement, most likely for the rest of your life...you just cannot stop taking your meds and expect to continue to feel fine.
I have no idea which brands of T4 are available in the UK but, during the 10 years I was on T4 drugs only, I felt best on Euthyrox (sometimes spelled Eutirox), by Merck. That brand seems available in many countries. I never felt as good on any other brand, which is why I ended up asking specifically for Euthyrox. I am not saying that would necessarily be your preferred brand, just that sometimes, we need to try different brands in order to know what works for us and what doesn't. We all react differently to different fillers and binders.
Completely OT...what really made me both sad and furious at the same time was the following statement on the lab sheet: "Measurement of fT3 is not generally indicated in patents on thyroxine replacement"...I know that is true, but that does not make it any less outrageous. I honestly wonder how many millions of hypothyroid people all over the world have suffered needlessly for years because of this belief...?!
I have another brand of levo by actavist that i am currently debating to take half of one which would be 25mcg or not?.. just dont want to end in a&e again! ..
what dosage you were on Euthyrox? sometimes low dosage have less side effect. I was on levo for 5.5 years (around 100mcg) and changed levo a few times but eventually they caused side effect and made me sick. I can't take levo with talc so can't take synthroid. I should switch to another brand or NDT. Maybe it is not because of filers but levo itself. But I will give it a try.
Yes i have now switched to the actavis brand im on day 2 of 50mcg so far so good.. and as i know through experience they work on a daily basis so if your intolerant/allergic/side effects would appear straight away..
Sorry if you've mentioned this already, but what is your diagnosis? I mean, what is the reason you are hypothyroid? I am asking because, in most cases, it's a chronic disease requiring life-long treatment.
Hi yes i was diagnosed with an under active thyroid about 7 years ago, was just told to take the levo for the rest of my life and have regular bloods checked and that was it really.. they did scan my thyroid gland at one point but said it was fine and was just not producing enough hormone...
sounds like your adrenal gland is in crisis and not converting t4 to t3 and your dose was too high and causing toxicamia..
I'm no longer on any prescription meds.. on natural hormones for thryoid and adrenal glands..week 6 and feeling the best in over 10 years.. how many times did I have to tell a doctor I was really ill and be told it's your thryoid go home and rest.. no friends and family to support me and no life .. now I can see the light at the end of the tunnel... if the NHS will not accept that the thyroid, adrenal and pituary gland have to work in harmony together for the body to function properly then thyroid patients will never recover.. in Scotland thyroid sufferers are petitioning their government to make these changes ...
Well i thought the t3 has gone low because i have been off the levo for 3 weeks?
So obviously not getting enough hormone at the minute..
To be honest never had problems with the levo before and havent had no side effects through the years bar racing heart sometimes and sweating easily..
This is why i have come to the conclusion that the teva new formula of levo is the culprit and that the fillers dont agree with me, and also i was on too much at the time which gave me severe anxiety/restlessness/bowel problems/sleep problems..
Plus all the side effects stopped when i stopped them..
Iv now just started levo again yesterday but i am trying a different brand which is actavis im on 50mcg so far so good...
Can I ask which product your are taking for your adrenals? I am looking for one at the moment as I have managed to wean myself off prescription Medrol, but still feel my adrenals need support. There are so many brands available that I am always interested when someone is doing great on something. Glad to hear you are BTW
Hi i do not take anything for my adrenals, i have never been told i have a problem with them as of yet..
But i have been referred to an endo because of my bloods going haywire and the doctor not knowing why so maybe the adrenals may be checked then im not sure?...
Sorry, the question was for KNEHOVE65 but I seem unable to move it...
they won't check your adrenal stress profile..
I'm on natural bovine hormones for both adrenal and thyroid..
I saw Dr Barry Peatfield who started me on my treatment. read his book "your thyroid and how to keep it healthy " every case is individual so what works for me is not necessarily right for you..
in 25 years not one doctor /specialist has mentioned my adrenals.. I've now had several private tests..my adrenal stress profile saliva test confirmed they were in failure ..
I've also had to go gluton/diary free which has cleared up all my eczema/ IBS and gastro reflux disorder ..
good luck
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