Help with latest results - diagnosis keeps chan... - Thyroid UK

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Help with latest results - diagnosis keeps changing

Victoria27 profile image
22 Replies

Hi had my thyroid bloods done last week with following results

Tsh 0.02 (0.49-5.32)

Ft4 10.6 (11.5-22.7)

Ft3 4.4 (3.5-6.5)

these are 5 weeks after stopping 25mcg levothyroxine after I ended up in “hyperthyroid state”. Results from 4/6:

Tsh 0.01 (0.49-5.32)

Ft4 20.8 (11.5-22.7)

Ft3 7.6 (3.5-6.5)

I was initially put on Levo 25mcg back in March when my ft4 was 11.4 and I had symptoms of hypo and they took me off it 2 months later because of the above results.

I’m 14 weeks pregnant and waiting for a referral for endo but the gp have changed my diagnosis from hypo to hyper and waiting to see what they say from the latest results but I can see myself I’m definitely not hyper.

Thanks in advance

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Victoria27 profile image
Victoria27
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22 Replies
Jaydee1507 profile image
Jaydee1507Administrator

If you have previously been hyperthyoid or over replaced then it can take many months, even years for your TSH to recover, so you then almost need to disregard TSH and look at your free hormone results FT4 & FT3.

GPs are trained mainly just to look at TSH which is why your GP thinks you are presenting more as 'hyper' now which is clearly not the case looking at FT4 & FT3.

Have you tested and are now supplementing key vitamins - ferritin, folate, B12 & D3?

Its hard to know what to do if just 25mcgs Levo sent your results to over replaced.

Victoria27 profile image
Victoria27 in reply toJaydee1507

My tsh was < 0.01 before I was started on Levo they prescribed it based solely off the low ft4 but other doctors have said I was hyper and shouldn’t have ever been prescribed it. It’s all so confusing.

Yes I had those done privately 12 months ago and all were normal (I haven’t got the results but I remember the ferritin and b12 to be at the upper end of the normal range).

Thanks for replying

Jaydee1507 profile image
Jaydee1507Administrator in reply toVictoria27

If you tested vitamins a year ago then its time to restest. Start a new post once you have the results.

Is there not an Endo with your midwifery clinic? Usually if pregnant with thyroid issues you should be seen sooner. You could try and expidite the referal.

Your results are odd. GP could also write to your local Endo for advice.

HealthStarDust profile image
HealthStarDust in reply toJaydee1507

You are not. You still have to wait for the booking appointment (usually between 8-12 weeks… longer in some areas) and then you are referred to endocrinology attached to their team and may not seen by them until 6 months and ir is likely to be a flying visit!

It’s mad when you consider the risks.

Victoria27 profile image
Victoria27 in reply toJaydee1507

Will do thanks for your advice. Yes I’m waiting for a referral, I was more worried about waiting while my ft4 is low and would probably need to be on the Levo that they won’t give me currently

HealthStarDust profile image
HealthStarDust in reply toVictoria27

Was you started on Levothyroxine by your GP or endocrinologist?

If GP, did they get advice from endocrinologist before starting treatment?

And, was you diagnosed while pregnant?

Sorry, just wanting to understand your situation a bit better .

Victoria27 profile image
Victoria27 in reply toHealthStarDust

Hi I was diagnosed before I was pregnant and was put on 25mcg Levo even though my tsh was making no sense at 0 consistently.

HealthStarDust profile image
HealthStarDust in reply toVictoria27

It is very strange that a GP started you on Levothyroxine with that TSH. I am not sure weather rightly or wrongly many would! Dis they get advice from an endocrinologist to decide if you should be started on Levothyroxine?

roukounasGK profile image
roukounasGK in reply toJaydee1507

Hello Jaydee1507 ! Is there any paper or article you can share about this information? I mean about the TSH taking months or years to normalize after over medication/hyperthyroidism. I seem to have this and i assumed this is the case but i cannot find any information confirming it.

Jaydee1507 profile image
Jaydee1507Administrator in reply toroukounasGK

I have found this paper and there may be more if you search google.

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

roukounasGK profile image
roukounasGK in reply toJaydee1507

I did search Google but i couldn't find anything. Maybe i did not use the correct keywords. Anyway, thanks for the link!

tattybogle profile image
tattybogle in reply toroukounasGK

roukounasGK, i collected several papers about this subject in my replies to this post : healthunlocked.com/thyroidu....

Go to the first reply on this post ....right at the end of that reply is this bit :

"~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

To understand why TSH stays supressed for a long time after an episode of hyperthyroidism/ overmedication, (or ANY T3 use) has finished , you need to look up 'Hysteresis'

frontiersin.org/articles/10... A Review of the Phenomenon of Hysteresis in the Hypothalamus–Pituitary–Thyroid Axis Melvin Khee-Shing Leow

healthunlocked.com/thyroidu... showing-the-delay-in-tsh-responses-to-thyroid-hormone-changes

:) CONTINUED ~ in my reply a LONG way further down this post."

scroll down replies to find the rest , it starts with :

:) CONTINUED " HYSTERESIS"

Why TSH remains lower for quite along while following episodes of hyperthyroidism / overmedication .... or any T3 use ** .

it is due (at least partly) to a mechanism called 'Hysteresis'.

"Hysteresis is a Greek term that means “shortcoming” and “to be late" ..... Although th.... "

roukounasGK profile image
roukounasGK in reply totattybogle

Wow! Aside from the term hysteresis, which is great for Google, this is a very informative post! Thanks a million tattybogle !

HealthStarDust profile image
HealthStarDust

This is a very strange in that there seems to be more than usual amount of posts with these swings from hypo to hyper, what may be what’s happening to me.

I’m now wondering if there is something wrong with the batches of medicines we are all taking and potentially they may actually have more active ingredient than they should leading to a much higher dose!

Victoria27 profile image
Victoria27 in reply toHealthStarDust

I never thought of that although would think that’s very unlikely surely?

HealthStarDust profile image
HealthStarDust in reply toVictoria27

I am some amount of suspicions when it comes to pharmaceuticals.

greygoose profile image
greygoose

Do you have Hashi's?

Victoria27 profile image
Victoria27 in reply togreygoose

I’ve been told I have the antibodies but no one’s actually diagnosed me with hashi’s

greygoose profile image
greygoose in reply toVictoria27

Well, you don't need a diagnosis to know that you have it. The antibodies are telling you so. And that's why your levels are jumping around. That how the disease works, but no doctor seems to understand that. If your antibodies are over-range, you have Hashi's. No further discussion needed. And those hyper-like results are only temporary. Sooner of later the levels will come down by themselves and you will be hypo again.

HealthStarDust profile image
HealthStarDust

I still can’t get my head around how your results were so drastic after only 25mcg of levothyroxine.

Hope you are OK.

Victoria27 profile image
Victoria27 in reply toHealthStarDust

I know they jumped up that quickly from only been on the Levo for 4 weeks and it’s dropped right down again after 5 weeks being off it. Dr thinks it could be an underlying pituitary problem but I’ll have to wait to see endo and go from there.

HealthStarDust profile image
HealthStarDust in reply toVictoria27

It could be. Not everything can be a hashi swing. But, I doubt know.

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