High tsh now: Good day, in August tsh was 0.01(... - Thyroid UK

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High tsh now

Sean23 profile image
26 Replies

Good day, in August tsh was 0.01(0.27_4.2)T4 31(9-19)

T3 24(2-5.3)

Now recent result

tsh 14(0.27-4.2)

T4 7 (9-19)

T3 5

Folate 33.2 b12 260 taken in end of September this ones and I don't have their ranges...endo says I should continue with Carbimazole 10mg a day from 20mg and I have been out of breath for over a month now..please help and they did test tshr =6

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Sean23 profile image
Sean23
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26 Replies
PurpleNails profile image
PurpleNailsAdministrator

Definitely in need of reduction based TSH & FT4.

The TSH is really quite high, FT4 under range, - FT3 i(f same range) is higher in range.  So doctors might be waiting for this to be lower also, but you’ll likely feel unwell keeping FT4 under range longer.

Hopefully FT3 will balance out but If FT3 rises again it may be the case that the FT3 is dominant & FT4 will always be too low before it get into range.  That needs to be treated with “block & replace” high carbimazole dose to block all function replace with Levothyroxine to restore the thyroid levels. 

TSHR or TRab usually has a very low range eg 1.  So if range similar you have positive Trab & confirmation of Graves.  

Has ferritin been tested? this often causes breathlessness.  Vitamin D should also be tested.  Might be worth arranging private test for nutrients.

You were started of 40mg, did you have a test before reducing to 20mg?   What were results like then?  6 weekly tested until stable very important.  

Sean23 profile image
Sean23 in reply toPurpleNails

Carbimazole was reduced when I tested in September my T4 was 12 and T3 was 5 tsh was still.0.01Ferritin was 387(dont know the range)

SlowDragon profile image
SlowDragonAdministrator

Bloods should be retested again in 4-6 weeks after reducing Carbimazole

Obviously you are currently over treated and hypothyroid

Thyroid levels should improve on reduced dose Carbimazole

what’s the range on Trab antibodies

B12 is very low

Folate, need range on result

You need vitamin D and full iron panel test including ferritin tested

Have you had TPO and TG antibodies tested for Hashimoto’s (autoimmune HYPOthyroid)

It’s possible, but rare to have Graves’ disease and Hashimoto’s at same time

Are you in U.K.?

Sean23 profile image
Sean23 in reply toSlowDragon

SlowDragon I'm in the UK...The endo just said he tested for Hashimoto and it's negative so it seems like I have to go private and do all those tests

SlowDragon profile image
SlowDragonAdministrator in reply toSean23

Suggest you test vitamin D now

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Request copies of all test results done by endocrinologist

You want to see exactly what has been tested and range on results

Low B12

Are you vegetarian or vegan?

Likely to benefit from B12 supplement

Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

Couple of weeks after starting on B12 consider adding vitamin B complex

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

Ferritin at 386 looks good still

Range for males is typically 30-400

Ferritin is frequently high when hyperthyroid and low when hypothyroid

September

T4 was 12

Ft3 was 5

tsh 0.01

Obviously need the ranges on Ft4 and Ft3…..but Ft4 looks low.

TSH frequently very slow to drop …..but TSH certainly moved now as it’s shot up to 14

pennyannie profile image
pennyannie

Hey there again :

Do you have your antibody test blood test back from 2 months ago and now have the medical evidence of which antibodies were over range and positive at diagnosis?

Sean23 profile image
Sean23 in reply topennyannie

Hi there, no I don't have them

pennyannie profile image
pennyannie in reply toSean23

Sorry for late reply - laptop wasn't well -

anyway the antibodies should be run from the that first blood test and the medical proof and evidence of what you are dealing with and what medication should be prescribed.

Sean23 profile image
Sean23

I'm at the hospital and the endo is saying I should stop Carbimazole and start Eltroxin 100mcg so he's confusing me now

PurpleNails profile image
PurpleNailsAdministrator in reply toSean23

I’m very surprised at that approach.  

Unless TRab negative & TPO & TG positive & is FT3 low,

I’m not sure why your doctor now decided you need replacement.

It’s true, usually someone with a TSH over 10 does need replacement but you have been on an antithyroid, - stopping that 1st & retesting is usually next step.

Stopping too early isn’t helpful, as starting & stopping carbimazole can have risks which staying on low dose continuously doesn’t.

Normal starting dose is 50mcg.  So stopping carbimazole AND start 100mcg is a massive jump.

Are you sure Doctor didn’t mean take both?

  I’m concerned the sudden upward fluctuation is not only going to be too much & cause hyper type symptoms but start off over production too.  

Can you speak to doctor again and ask why such a change?

 In September your FT4 was low & FT3 high there too.  They may be to used to seeing a low TSH.  but as TSH has shot up decided to reverse treatment.  

The TSH is high & because the FT4 is low, but taking a replacement may cause your FT3 which is already quite high to surge above range again. 

High ferritin can be sign of inflammation.  Have you had CRP checked?  This is quite likely high with Graves.

Sean23 profile image
Sean23 in reply toPurpleNails

He checked CRP which is 7 (0-10) range

pennyannie profile image
pennyannie in reply toSean23

What is your diagnosis and what medical evidence is there for prescribing either Carbimazole or and/or Eltroxin T4 - Levothyroxine,

Was something called Block and Replace mentioned ?

Sean23 profile image
Sean23 in reply topennyannie

When I was first diagonosed I was told that I had hyperthyroidism then he did a tshr test that came back with 6(don't know the range) he said it is graves ..Then he said he also tested for hashimoto and it came back negative... So I was started on 40mg carbimazole then in September got reduced to 20 because test results were T4 (9-19) T3 was 5 (2-5.3) tsh was still 0.01

Sean23 profile image
Sean23 in reply toSean23

He didn't mention block and replace he just said I'm hypo now I should stop Carbimazole and start 100mcg eltroxin

Sean23 profile image
Sean23 in reply toSean23

Can I do the block and replace method on my own?Can eltroxin be cut in half and make it a 50?

PurpleNails profile image
PurpleNailsAdministrator in reply toSean23

you’d need a high carbimazole dose over 30mg for block level. & likely higher Levo too.

Its better to discuss and agree approach with Doctor. If you have unusual results next time -after doing your own thing- doctor will be concerned about how to treat in future & this could cause greater issues.

Including in some situations where doctor “labels” you as -non compliant- & discharges you.

Call and ask of you can discuss further as you had time to think about it & your not sure the suggested treatment right.

Point out positive trab, Grave ps diagnosis- negative TPO & TG (as Hashimoto’s negative) FT3 still high. Ask if you can stop carbimazole 1st & re test in 4 weeks. That might be a better compromise.

You need to obtain all your results & ranges as at present you are trusting that doctors have tested antibodies & interpreted correctly. you need to view & check.

pennyannie profile image
pennyannie in reply toSean23

Please get a copy of your what you have been diagnosed with and the medical evidence of which antibody was over range and positive at diagnosis and why you were put on Carbimazole.

I don't know what 6 refers to - could that tshr be a TRab ?

The antibodies for Graves Disease are generally expressed as either a TR ab - a thyroid receptor blocking antibody or a TSI - a thyroid stimulating antibody - and there will be a number ' scored ' shown against another number :

Both Graves and Hashimoto's can start off the same way and why it's imperative that that confirmation is from antibodies found positive at diagnosis - as they are not treated the same way - Graves = Carbimazole ; Hashimoto's eventually = T4 :

Graves is considered life threatening if not treated and the treatment is with AT drugs like Carbimazole for around 15-18 months.

If your immune system has been triggered by Graves this buys you time to allow the immune system to calm down and stopping treatment with an AT drug too early is not recommended and as detailed in my first post to you, the longer oe stays on the AT drug the better the outcome for the patient.

The antibodies for Hashimoto's are generally expressed as either a TPO and or a TgAB - and there will be number and a range :

Hashimoto's is not treated with AT drugs :

Some people have Graves and Hashimoto's running in tandem - please get details and proof of diagnosis.

It is very confusing and when unwell everything and anything is too much - surely you have copies of your results detailing some details of antibodies found at diagnosis ?

Sean23 profile image
Sean23 in reply topennyannie

Good day my tpo AB results are <10 range (0-50) and my tgAB is 20 range (0-100)

pennyannie profile image
pennyannie in reply toSean23

This would seem to mean that whatever antibodies were found over range and positive were not the sort that required an anti thyroid drug to be prescribed.

You really to know what you are being treated for and be given formal evidence of diagosis.

tattybogle profile image
tattybogle in reply topennyannie

Hi pennyannie :)

Sean23 has a TRab result .. it's been written as TSHR which is just another way of writing TRab (Thyroid Stimulating Hormone Receptor antibodies ).. and 6 would definitely be positive by most ranges i've seen . (TRab ranges are often around <1 ish )

pennyannie profile image
pennyannie in reply totattybogle

Oh, sorry , my laptop went down Friday and I was just in catchup last night and replying to where I was and didn't read on and follow through additional information.

Thank you.

Sean23 profile image
Sean23

Good day again, endo wanted to put on 100 eltroxin as I said before and he arranged for a nuclear scan for me which revealed I have hashimoto thyroiditis and after a week I asked him to check my bloods again and he only checked the tsh which is now 7 from 14 and I haven't been taking any eltroxin but now he wants to me on it again

SlowDragon profile image
SlowDragonAdministrator in reply toSean23

So scan suggests Hashimoto’s

20% of Hashimoto’s patients never have high TPO or high TG antibodies

However you also have high Trab antibodies confirming Graves’ disease

Are you still taking Carbimazole?

If so, how much

Has Carbimazole been reduced ?

Is endocrinologist proposing “Block and replace “ ?

Block with Carbimazole

Replace with levothyroxine

Have you had vitamin D test results yet

Are you now improving low B vitamin levels

Sean23 profile image
Sean23

And we aslo waiting for antibodies results

Sean23 profile image
Sean23

Antibodies are back Tpo AB is <10 range is (0-50) and TgAB is <20 range is (0-100)

SlowDragon profile image
SlowDragonAdministrator in reply toSean23

20% of Hashimoto's patients never have raised antibodies 

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

Gluten intolerance is often a hidden issue too.

Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

Graves Disease antibodies test

medichecks.com/products/tsh...

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