Good morning
I had 2 blood tests a month apart and have been told I have an under active thyroid, prescribed 50 mcg of levothyroxine and told I am also being referred to an endocrinologist as one of the numbers is really high (can’t remember which one but he said it was over 900) as this means anti bodies are attacking something and they need to see what it is - just a little nervous around seeing a specialist and what it could be , has anyone had any experience with this please?
Thank you
Welcome to the forum
Standard starter dose of levothyroxine is 50mcg
Which brand of levothyroxine are you currently taking
Be aware many people find different brands are not interchangeable
Once you find a brand of levothyroxine you get on well with, best to stick on same brand at each prescription
Most easily tolerated are usually Mercury Pharma brand or Accord
Accord is also boxed as Almus via Boots or Northstar via Lloyds (but beware Northstar 25mcg is Teva brand)
Bloods should be retested 6-8 weeks after each dose increase
Always test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Likely to need several further increases in levothyroxine over coming months
High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Technically it’s Hashimoto's (with goitre) or Ord’s thyroiditis (no goitre). Both variants are autoimmune and more commonly just called Hashimoto’s
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s.
U.K. medics only call it autoimmune hypothyroid and usually ignore the autoimmune aspect. Only the subsequent hypothyroidism is treated
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Low vitamin levels are particularly common with Hashimoto’s.
Have you had vitamin D, folate, ferritin and B12 levels tested yet ?
If not, request testing at next blood test
Gluten intolerance is often a hidden issue too
GP should do coeliac blood test as well
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Autoimmune thyroid disease is extremely common
There’s about 2 million people in U.K. on levothyroxine
It’s the 2nd or 3rd most prescribed medication
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, PPI like omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Thank you 😊 I pick up the prescription this morning so will check which brand it is. I am going to ask them to print out the results as difficult to take in/understand on a telephone appointment! Hopefully they will.
Also I take fluoxetine not sure if this affects anything… I started this after the first blood test and this high number seems to be higher than the first one, but again first results were via telephone so could have missed it.
But will ask for a print out and have a look
Unless you are, or suspect you’re lactose intolerant best to avoid Teva brand
You can request brand of your choice at pharmacy
Fluoxetine is an anti-depressant but some patients may be prescribef this before being diagnosed with hypothyroidism.
There are two thyroid hormones required in our bodies, to enable it to function as normal. One is called T4 (levothyroxine - inactive hormone should convert to T3).
T3 - liothyronine - is the active thyroid hormone needed in our millions of T3 receptor cells and brain and heart contain the most.
Some GPs don't seem to be knowledgeable about dysunctional thyroid glands and they are apt to prescribe 'other prescriptions' for the clinical symptoms that can arise.
T3 (liothyronine) is the active thyroid hormone and I would suspect that you may have had a very low T3 before being prescribed .fluoxetine.
I will state I am not medically qualified but have had a number of additional diagnoses for things I didn't have.,
A Full Thyroid Hormone Blood test should be at the very earliest possible .(you can drink water) but do not take thyroid hormones before it but afterwards. It consists of:-
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
If GP wont test all you can get a home 'blood test' through one of our recommended labs.
Also ask GP to test B12 and Vitam D as we can be deficient.
Good morning fraggle80, The very high number could be one of two things.
If you ask the GP's reception for a printout of the thyroid blood results you will be able to find out which test they had the very high result for.
The blood tests that GP's do for thyroid are:
1)
TSH (thyroid stimulating hormone) this is a signal from the pituitary gland (in the brain) to the thyroid, to ask for more (or less) thyroid hormone to be made. A higher number means 'make more please' .
In health the TSH is usually between about 0.5 and 4.5 (ish) ,but when the thyroid doesn't produce enough thyroid hormone (T4) anymore TSH will go above this level .
TSH can get up to 10 /50 /100 or even higher when we are hypothyroid.. but occasionally people get very very high results like 400 .. however when people get TSH results at that sort of number it is usually because of something (complicated ) interfering with the test at the lab .. this isn't anything to worry about .. it just confuses the GP so they send it on to an endocrinologist who might need to get it redone at a different lab using a different test method.
( the other Test they may have done is is fT4 (free T4) .. T4 is the actual hormone produced by the thyroid, in hypothyroidism this is low.. so your high result wont be this one)
2)
TPOab (thyroid peroxidase antibodies) These are what show up when the cause of the hypothyroidism is autoimmune ~ (the immune system has mistakenly started attacking the thyroid tissue , which means thyroid peroxidase ends up in the blood .. where it shouldn't usually be, and these antibodies stick to it like markers, saying 'clean this up .. it shouldn't be here' )
TPOab levels in autoimmune hypothyroidism are often in the low 100's, but it is not all that unusual to have very high levels ... in the 1000's .. (i had over 3000) but if a GP hadn't seen someone with over 500 before .. then a result of 900 could freak them out. and perhaps that might make them refer ?..... but don't worry.. finding extremely high TPOab is no 'worse' than finding them in the low 100's ... it just means that at the point they were tested , the immune system had recently attacked the thyroid.. so there was lots of thyroid peroxidase in the blood for them to latch on to... their levels go up and down when parts of they thyroid tissue have been damaged.
Without seeing your actual results that's all i can say... but these are the most likely explanations, and neither of them are worrying.. they are just odd things that happen sometimes.
Anyway .. welcome to the forum .. and well done for finding it.. there are people here who will help you understand anything and help you get the best treatment.
How are you feeling ?
( Ask the reception for the TSH result [and lab range], and the fT4 result [and lab range] and the TPOab result [and lab range] ,,as long as a GP has already seen them they are allowed to give them to you,, but not all receptionists know this,, so if they say you can't have them or just say "it was high" ask to speak to a different receptionist.
They shouldn't ask why you want them , but if they do just say "for my records" )
Hello Fraggle and welcome to the forum ;
I imagine it must be very hard not getting your results in person as there's never enough time to think through everything before the call is over.
If you dip into Thyroid UK this is the charity who support this forum and you can read around all thyroid health issues.
I would imagine your doctor was referring to " antibodies " being high, and why you are being referred to endocrinology and " guess " you may have Hashimoto's auto immune thyroid disease.
I would hope once optimally medicated your need for any anti depressant will be zero, and suggest you take the lowest possible dose, if you think you need it, and well away from your thyroid hormone replacement.
Thank you all so much for your comments. The doctors was only open for an hour today which I missed so wasn’t able to pick up the prescription or ask for a print out of the results! So will be back there Monday.
I had asked for a blood test as I was always feeling tired, lethargic, low energy etc no matter how much I slept and it came up then so had to test again 4 weeks later which was last week and got results yesterday. But yes hard to make sense of it and understand what is tested etc over the phone so just a little confused with it all?
I have had anxiety on and off for years so was prescribed that at the appointment 4 weeks ago, but a lower dose than I have had previously as with job changes and other things happening felt like it was getting bad again.
I’ll come back with my results Monday hopefully!
Anxiety (and depression) are extremely common hypothyroid symptoms
This should improve as dose levothyroxine is increased slowly upwards over coming months
Hi, I picked up results:
1/11/21
Thyroid peroxidase antibodies 989
Serum TSH level - abnormal- 10.06 mIU/L (0.30-4.80)
Serum free T4 level - normal - 8.7 (7.70-20.60)
4/10/21
Serum TSH level - abnormal - 10.17
Serum free T4 level - normal - 11.2
No figure for thyroid peroxidase
Thanks
OK ,, so as we suspected it's the TPOab that are 989
The usual range for them in healthy people without autoimmune thyroid disease is (less than) <34 or (less than) <50 depending on which test was used.. so 900 is lots ...
but don't panic ... i had > 3000 and nobody ever thought i needed referring to an Endocrinologist . There is nothing the Endocrinologist can do about it anyway .. the treatment is the same no matter how high they are .. replace the low thyroid hormone (T4) with Levothyroxine .
And this is always managed at GP level ... so i'm surprised they have referred you,, and can't really see why , unless this GP has just never seen a level that high ,,, but it's not that unusual for GP's to not know much about treating thyroid disease.
The endocrinologist will just tell the GP to carry on replacing your low T4 with Levo and doing repeat blood tests until the dose is right for you ....( and probably tell him off for referring somebody with uncomplicated hypothyroidism.. endocrinologists usually just see people with hyperthyroidism .. or people with hypothyroidism that GP's can't manage to get the stable on the right dose of Levo)
Your GP should retest your blood after 6-8 weeks on 50mcg Levo .. and then your dose will probably need increasing.
When he was going through the results with me he seemed quite shocked about the 989 and said he referred me as needed to understand why so high so yes maybe not fealty with it very much?
Despite not actually being anything to worry about... 'very very high' antibody results do have their uses .. they seem to make GP's sit up and take notice ... when he got mine back my GP at the time went from months of saying
"maybe you're depressed ,
lots of us feel rubbish in winter,
wanna try some antidepressants ?"
to
"Oh ..... your immune system is eating your thyroid .... have a prescription for levo. "
.... and because my TSH was only 6.8 i suspect that without the astonishingly high TPOab ,, i would have been left without Levo for a lot longer.. maybe years longer.
So be glad of your astonishingly high antibodies .... they have done you a favour (sort of ) in getting you noticed and taken seriously.
P.s if you actually do get to see an Endo i'd love to know what they say ....
My mum also has the same thing and takes the same medication I have been prescribed but she has never been told her antibody results or been referred so might just be a case of the GP not really knowing?
I will let you know! Thank you 😊 I only asked for the blood test as was always feeling tired… assumed it would be iron or B12 or something…!
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