Now over active but no thyroid: Hello everyone i... - Thyroid UK

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Now over active but no thyroid

cloudwalker profile image
16 Replies

Hello everyone i recently had my yearly blood test for my thyroid levels and two days later i get a phone call from my doctors surgery asking me to make an appointment for a medication review and to talk about my thyroid

I asked if my blood test result were back and she said yes and they show i am slightly over active and the doctor wants to talk to me about it

My appointment is a week today but i do not understand how i can be over active i had my thyroid removed last year and the blood test this time last year was 'normal' but i made the mistake of taking my meds before hand last year

I did not take them until afterwards this time and i really thought it would be the other way round and my meds would be increased due to the symptoms i have

pins and needles in my hands

Tired in the day whether i sleep ok or not

Weight gain

A feeling like my head is full of fog

Sometimes feeling like i cannot get enough air in to my lungs quick enough

But i also seem to sweat at night now not every night which i believe is an over active symptom?

Can anything affect a blood test? I am worried the doctor is going to cut my dose and im going to be left feeling worse i am currenly taking 125 levothroxine

I am going to ask for a print out of this years blood test results when i go for my appointment next week and last years if i can too

Thank you for reading this

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16 Replies
SlowDragon profile image
SlowDragonAdministrator

Firstly you can not be hyper, you might (but unlikely) be slightly over medicated, that is not the same thing at all

Sounds like you may have low B12 and/or folate

b12deficiency.info/signs-an...

Ask GP to test B12, folate ferritin and vitamin D.

If any of these four are too low it prevents us using thyroid hormones. So the Levothyroxine sits in blood struggling to be used. Bloods look like you are over treated, but you feel hypo and are hypo

Also can not tell much about level of medication just by testing TSH alone

You need TSH, FT4, FT3 and TT4

May have to test privately but perhaps ask GP first

When on just Levothyroxine TSH often needs to be low in order for FT4 and FT3 to be at decent levels.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

Private testing

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

cloudwalker profile image
cloudwalker in reply toSlowDragon

Thank you i will talk to the doctor about those tests, i have written them down along with my symptoms so i get across everything i need to say as i get so nervous

Clearly you cannot be "over-active" (nor under-active, if it comes to that) if you have no thyroid, as both descriptions refer to the functioning of the thyroid. What you "may" be, is over-medicated, which is a different thing entirely. Can you not call into your surgery before your appointment, to ask for a printout of your latest results, so that you can post them here and get feedback before your appointment? Are you taking T3 by any chance? I ask because my T3 was recently withdrawn under the guise of the same "please make an appointment to discuss your medication" letter.

cloudwalker profile image
cloudwalker in reply to

Thank you for your reply i am not taking T3 just the levothyroxine

Calling in to my surgery to get print out is a good idea thank you i will do that and then post them

SlowDragon profile image
SlowDragonAdministrator in reply tocloudwalker

Definitely a brilliant idea 💡

helvella profile image
helvellaAdministrator

cloudwalker,

You most certainly wouldn't be the first person who has been told by a doctor that high TSH indicates hypERthyroid. Or simply confusing hypOthyroid and hypERthyroid.

Get your results (as you have said you will do) and contemplate before making that review appointment.

I pretty sure it is physically and medically impossible to be have an overactive thyroid without a thyroid. You could be overmedicated, but most likely your TSH is just low and your doctor is panicking. Do you have your full results: TSH, free T4 and free T3?

Sweating can be a symptom of under or over medication, or hormone problems or adrenal problems. You sound more undermedicatd than over. I wonder if youare converting T4 ot T3 effectively? Some of your symptoms could be caused by low iron or low B12? Do you have any blood results for those?

cloudwalker profile image
cloudwalker in reply toAngel_of_the_North

I spoke to the doctor on the phone last night and he has printed off my results for me to collect this afternoon

He also wants me to have another blood test done in 6 weeks time and said he is not going to do anything to my dose until the results are back and he has talked to me about them

I don't think they tested for b12 or iron but i have an appointment with the same doctor next week so i will be able to ask and tell him all my symptoms

It is a bit of a relief that he didn't just jump on the test results and change my dose and i will put my results up tonight when i get them

cloudwalker profile image
cloudwalker in reply toAngel_of_the_North

I have my results and have posted them

Thanks

cloudwalker profile image
cloudwalker

I now have my results and they are:

Serum free T3 4.7 (3.50-6.50pmol/l)

Serum free T4 16.6 (10.30-22.70pmol/l)

Serum TSH Level 0.03 (0.35-5.50mu/l)

Angel_of_the_North profile image
Angel_of_the_North in reply tocloudwalker

Need ranges. For most UK ranges, that's not overactive, but slightly undermedicated for someone on levo (but need exact ranges to tell). Free T3 and Free T4 should be in the top quarter of their ranges and TSH is pretty much irrelevant when on meds,

cloudwalker profile image
cloudwalker in reply toAngel_of_the_North

Thank you i have updated my results with the ranges

Angel_of_the_North profile image
Angel_of_the_North in reply tocloudwalker

So slighly undermedicated. Aiming for Free T3 of >=5.48 and free T4 of >=19.6. It's the low free T3 that causes the hypo symptoms usually, esp brain fog and air hunger. Sometimes the body pumps out adrenaline to make up for the low hormones, which can cause sweating, anxiety and palpitations.

cloudwalker profile image
cloudwalker in reply toAngel_of_the_North

Thank you so much that all makes so much sense of my symptoms

Really helpful so thank you again

humanbean profile image
humanbean

But i also seem to sweat at night now not every night which i believe is an over active symptom?

This might be caused by too high a dose of thyroid meds but I find that hard to believe in someone on 125mcg Levo with no thyroid. What may happen is that the body substitutes cortisol and adrenaline for thyroid hormones when there isn't enough thyroid hormone to keep the body going.

If you were adequately medicated for your missing thyroid then, theoretically, your cortisol and adrenaline levels would drop to normal.

Excess cortisol and adrenaline could make you sweat - a lot!

I am hypothyroid, and with hindsight I have been this way since I was a child. I didn't start getting treated until I was in my 50s. My problem sweating, which I've suffered from for decades - particularly around 4am in the morning - has reduced quite markedly for the first time in my life, and it is such a relief!

cloudwalker profile image
cloudwalker

I am so glad you are feeling so much better...thank you for your reply too i now have a lot of information to go to the doctor with....what would we do without everyone on this site

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