High antibodies result: My GP recently lowered my... - Thyroid UK

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High antibodies result

doityourself profile image
19 Replies

My GP recently lowered my Levothyroxine from125 to 100. Because of ad normal results although I had no symptoms. I now have severe symptoms of weight gain, extreme fatigue, dry skin, loss of hair. within 4 months of taking 100 doseMy result are now within'normal' range I'm told but Antibodies are 15 when they like them to be under 5. sorry I don't know range or units. This is a NHS result.

Should I be concerned? Does my dose of Levo need adjusting due to Antibody results?

Thanks in advance.

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doityourself
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19 Replies
crimple profile image
crimple

doityourself do you know which antibodies the medics are talking about? Most of them ignore antibodies. Do you have results for TSH, T4 andT3 levels, with their ranges. Figures in brackets. Sounds like your levo shouldn’t have been reduced but seeing lab results would be very helpful.

doityourself profile image
doityourself in reply tocrimple

I'm getting a printout of results shortly.I certainly feel that my Levo has been lowered too much but GP said previous results showed levels too high.

Thanks for your reply.

tattybogle profile image
tattybogle

levels of antibodies have nothing to do with Levo dose ... changing dose has no effect on antibodies , and doses are not adjusted based on antibody levels ... dose of levo is adjusted based on TSH and ft4 levels and symptoms.

Assuming they are TPOab ( thyroid peroxidase antibodies ) , if they are over range ,these simply confirm the cause of your hypothyroidism is autoimmune.

TPOab levels will go up and down, and over many years they usually reduce somewhat mine were >3000 at diagnosis , 20 yrs later they are about 100 . In autoimmune hypothyroid patients ,it is likely they will always be over range as there is no treatment for the autoimmune aspect .

doityourself profile image
doityourself in reply totattybogle

Thank you for your reply. You've answered a question I didn't ask but have been wondering about, whether antibodies simply confirm autoimmune and whether they are relevant to dose levels

Obsdian profile image
Obsdian

Despite you're saying antibodies with yhe numbers 15 and 5 it still makes me wonder if you or the GP actually meant tsh.

doityourself profile image
doityourself in reply toObsdian

Thanks, I'll double check

greygoose profile image
greygoose

Ask at reception for a print-out of your results - that will have the ranges on it. You need to know exactly what was tested and exactly what the results were - never take your doctor's word for anything, always check - and keep your own records. It is your legal right to have that copy, they are your results.

Welcome to the forum. :)

doityourself profile image
doityourself in reply togreygoose

Hi.Thank you for your reply. I will take all that you say on board and also get results from GP and repost once I have them.

greygoose profile image
greygoose in reply todoityourself

Not from the GP him/herself. They would rather you didn't know because then you can't argue! Ask at reception.

SlowDragon profile image
SlowDragonAdministrator

Suggest you

A) get copies of most recent tests

See exactly what was tested. Frequently only TSH which is totally inadequate

B) Get FULL thyroid and vitamin testing

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

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

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

If you can get vitamin levels tested via GP

Just TSH, Ft4 and Ft3 test - £32

monitormyhealth.org.uk/thyr...

10% off code here

thyroiduk.org/testing/priva...

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

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

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endocrinenews.endocrine.org...

In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70

Do you always get same brand of levothyroxine at each prescription

doityourself profile image
doityourself

Thank you for all the testing information. I will make use of this.As I have Pernicious Anemia I have b12 shots every 4 weeks which seems sufficient. There can't stop taking b12.

I felt absolutely fine on my 125 Levo dose so feeling very cross that it's been adjusted and now I'm feeling half dead! I will check whether supplier if Levo is the same.

Im not able to take my Folate regularly as it causes constipation and I'm awaiting surgery for a severe prolapse atm.

I can see the time for independent testing has arrived!

linkit profile image
linkit

the best way to keep track of it all is to download the NHS app and get a log in from your surgery. Nothing is hidden it’s all there for you to navigate test results from everywhere consultations letters everything 😊

Catlover1981 profile image
Catlover1981

Having too low TSH can affect your heart as well like it did mine but I do feel better on my lower dose 125 from 150. Is there another doctor in your surgery you can talk to?

Tina_Maria profile image
Tina_Maria in reply toCatlover1981

How can the TSH affect the heart? The TSH is a pituitary hormone, which is sent in response to your levels of T4 and T3. If you also have high levels of T4 and or T3, then yes, over-range levels can affect the heart and increase your heart rate or can cause palpitations. The TSH itself cannot do that as it is just a hormonal signal. And in any case, in some people with thyroid disease, the TSH-T4 feedback is not working as it is in a person without the disease, so the TSH response when taking levothyroxine is not a reliable measure!

GPs always muddy the water with these comments, a low TSH as such cannot cause problems for the heart, if the T4 and T3 are within the normal range. But they use it as an excuse to lower your medication, sometimes without even testing for T4 and T3. And this can leave you under-medicated, as it seems to be the case with doityourself.

Catlover1981 profile image
Catlover1981 in reply toTina_Maria

Many doctors have told me that and when I was hooked up to a heart monitor they said my T4 was 36 and TSH was unrecordable

Tina_Maria profile image
Tina_Maria in reply toCatlover1981

Well, if your T4 was 36 (and the range is usually up to to 22) then of course you were truly over-medicated with T4 and as a result your TSH was suppressed. So in your case, it was the right decision to lower your T4 accordingly.

However, we do see many cases that the TSH is low even though the T4 result is well within the range and of course if you then lower the T4, patients will get symptoms, as it is not based on sound evidence. And again, the TSH will not give you symptoms, but an excess of T4 will. The excess of T4 would have given you a high T3 reading as well, so hight T4 and T3 = high heart rate.

doityourself profile image
doityourself

Thanks for reply.Unfortunately my GPS way of organising appointments seems very random. 3 week wait and only a telephone call from a locum is the norm. Currently feeling so poorly I'm not up to doing battle with the receptionists. Their answer, Go to AnE!

Catlover1981 profile image
Catlover1981 in reply todoityourself

Go to A&E and say my GP receptionist said to come here! My GP receptionists would never say go to A&E.

CoeliacMum1 profile image
CoeliacMum1

You should be able to get online access to your NHS records and test results, this may require you to go to surgery and set this up, (ask what they require eg passport & proof of address, birth certificate- save 2 trips) but once done as long as you don’t forget your login details, it should be only time you need to do this. You then should be able to order prescriptions etc online too if you wanted to. Given many surgeries now prefer paperless, this maybe best way going forward rather than asking for copies and this way you’ll be able to follow anything you go to your surgery or hospital etc (NHS) for. Anything private will only be recorded if the consultant or clinician has sent your GP surgery information, then it will be usually recorded sometimes can be 2wks later.

Once you have the relevant information repost as it will be easier to understand what it is or why GP reduced your meds.

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