My TSH is bouncing round and I don’t know why, any thoughts or advice please.
I’m on 50mg levothyroxine age 29, female.
Diagnosis hashimotos about 18months ago I don’t have the exact antibody number for that time but told antibodies where “sky high” and my TSH was 10.2 and free T4 “normal” . Commenced 25mg then increased to 50mg.
Fluctuating levels (FT4 & FT3) are expected with Hashimoto’s. The immune system attacks the thyroid, cells are destroyed and they release their hormone stores - levels go up, TSH responds but going down. Once the thyroid levels drop again TSH rises. TSH usually takes time to respond. So readings can look a bit unexpected.
This happens more early on, but as more of the remaining thyroid is destroyed there is less function thyroid so the fluctuations lessen, a full replacement dose of levo will become necessary.
Are your test taken in a consistent manner? Time of test, if you eaten or had eg coffee or taken your levo shortly before test will all affect results.
For any ultrasound completed ask the referring doctor or hospital for a copy of the specialist report. Doctors rarely explain the full information included. There are often details which may clarify things.
Nothing abnormal . don't worry .. it's just what happens.
It just means 50mcg was not enough . So your TSH (Thyroid Stimulating Hormone ) has risen again to 'ask' for more .
Once you are on a large enough dose for your needs , your TSH should stay more stable .
But just so you are aware for the future ...... with autoimmune hypothyroidism you may get a few ups and downs over the years anyway even when you are on' the right dose' .
When the immune system attacks the thyroid it can dump a bunch of ready made T4/T3 into the bloodstream ,and this can mean your fT4 /fT3 go up unexpectedly. and your TSH lowers ... but once this extra T4/T3 has been used up , the thyroid which is now more damaged than it was before , is less able to make T4/T3 by itself .. so then your dose may need to be increased .
But this doesn't seem to be a problem that everyone with autoimmune hypothyroidism has .. some just get a period of high T4/T3 ( which may easily be missed if it's not too bad) before they are diagnosed hypo , and then once they are on the right dose they stay fairly stable for many years on the same dose.
I was on 150mcg for about 15 yrs until the menopause seemed to mess it up a bit, it has settled down again but i now only need 112.5mcg
The infertility clinic (where most recent bloods where completed) has wrote to my Gp to increase to 75mg, I’m going to call Tuesday to get it sorted . I take it at night because I take all of the below in the morning , to ensure there’s plenty of time in between.
I don’t eat for about 3-4 hrs before.
I’m currently taking
-Generic preconception multivitamins
- 4000ui Vit D ( January bloods shown I was deficient)
- 300mg ubiquinol ( equal to 600mg CQ10)
- 50mg DHEA
Brand is generic says North Star on the box assume that’s the manufacture.
Bluediver, when your levo is increased to 75mcgm do ensure that you get the same brand of meds. helvella has written a very good document that lists all thyroid meds and their contents. TEVA can cause problems for a lot of people, it did for me, due to acacia powder in the filler. A 50mcgm tablet can be spilt in 2 to give 2 x 25mcgm doses.
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
Helvella you are a marvel what an incredible document you have produced, it is fantastic and i thank you for your knowledge and efforts. Also i recently bought the merk Thyroxine in Spain as i have the same issue with doctors trying to keep me on the yoyo when will they wise up. Thank you
What an excellent piece of work. And it does cast some light on why it all goes wrong when my GP treats only my suppressed TSH by reducing my dosage. I get on just fine with 100mcg Accord Levothyroxine. But then she drops it to 75 and Accord doesn't do it, so it's Teva. I've no idea if mannitol or acacia affect me or if it's just too low a dose, and I don't know how to find out. Off to Google.
Blobby 1234 If you want to keep to Accord brand for 75mcg. ask for it to be prescribed as 'alternate dosing 2x50mcg one day (100mcg ) / 1x 50mcg the next' ...due to the long half life of Levo this averages out at 75mcg /day.
then either take like that, or if you find you can feel the difference between the 50mcg /100mcg days and would prefer to take the same each day, you can cut a 50mcg in half to take 50 + 25mcg =75mcg /day .
Just cut one tablet at a time and use the other half the next day .(don't cut a weeks worth all at once in case the halves aren't quite equal, or you might end up taking several days in a row of the halves with less in )
This way you can find out if it's the Teva or the lower dose the is the problem. Allow a few weeks back on Accord to see the effect.. i find it takes me a couple of weeks to feel better on a brand i prefer after i've had Teva , so don't expect it to feel better straight away .
If GP is difficult about changing prescription back to Accord then use this to support your request:
MHRA Safety update re. switching brands of Levo
gov.uk/drug-safety-update/l..."If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient..... "
Then after you've tried 75mcg Accord for a couple of months , if not feeling better and bloods show you might have been reduced by a bit too much ,consider asking GP to try a dose in between 75mcg and 100mcg .(87.5mcg) this can still be done with Accord . but you would have to do 75mcg one day / 100mcg the next , as it would be too fiddly to split a 50 into 4 and Accord don't make a 25mcg.
In future, to help with fine dose adjustment if avoiding Teva you could also consider some of the other Brands that do 25mcg tablets , as lots of the people who feel naff on Teva feel ok an these:
Wockhardt 25mcg
Mercury /Advanz / Eltroxin... 25mcg ( all same tablet, but different names)
NOTE . do not accept 'Northstar' 25mcg packets if you are avoiding Teva , becasue this packet contains Teva 25mcg tablets .
However 'Northstar' packets of 50 and 100mcg contain Accord 50/100mcg tablets so they are OK for you .( Northstar don't make their own tablets)
Autoimmune problems are an indication there's an infection of candida, EBV, Lyme etc that's in the thyroid or joints in RA etc, clear up the infestation and the autoimmune ussues will likely resolve themselves.
Their also an indication of low vitamin D levels, with adequate vitamin D 70-100nmol on your blood test results there's adequate to make cathelicidins, cathelicidins are natures antimicrobial that gobble up bacteria viruses fungus etc, also ideally a low GI (Glycemic index) diet 55 or below for the meal, include berries like 🫐 etc these have natures antifungal to protect themselves and protect us too
I feel your pain. I don't even HAVE a thyroid anymore (surgically removed in 2013) and I've been riding the TSH rollercoaster since then. I can't seem to keep my TSH in a consistent place, it spikes or crashes for no apparent reason every few months. Change in eating habits? Change in exercise amount? Shouldn't be hormonal since I'm post-menopause but it's still a frustrating challenge. Specialist says I am just one of the 5% who are extremely sensitive to Synthroid and the way it's absorbed. (shrug).
And if it’s bouncing so much is it likely increasing can potential put me overactive considering it was 2.1 3 months ago ?
People who have an underactive thyroid (and haven't been diagnosed or treated) tend to end up with :
High TSH
Low in range or under range Free T4
Low in range or under range Free T3
People who have an overactive thyroid (and haven't been diagnosed or treated) tend to end up with :
Very low TSH
Over the range Free T4
Over the range Free T3
my picture is slightly complicated that I am under infertility investigations.
Low thyroid hormone levels will reduce your chances of conceiving in the first place, and if you did conceive your risk of miscarriage would be high too.
Low levels of nutrients will have similar effects too. The particularly important one are :
Vitamin B12
Folate
Vitamin D
Ferritin (iron stores)
If your ferritin is low or high then getting an iron panel done as well would be a very good idea.
Other useful nutrients to get tested are :
zinc
copper
selenium
iodine
but not many people do these last four. Tests are expensive!
If you need advice on which tests are worth doing, please ask.
Having got some nutrient testing done, post the results and reference ranges on the forum and ask for feedback.
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