Graves disease but no treatment: saw the endo on... - Thyroid UK

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Graves disease but no treatment

Pinklew profile image
17 Replies

saw the endo on 12th sept after a long wait who diagnosed graves disease. I have had no contact since and had to ask today for copy of his letter and the results. He states at the bottom of the letter that thyroid function is improving and not for treatment at present. I am currently on propranol SR 80mg for palpitations. Latest blood results are: TSH 0.02, FT4 15 4, FT3 4 9 got to wait now for review in 8-10 weeks

Are these levels concerning still? So tired all the time and im not feeling much better

17 Replies
Buddy195 profile image
Buddy195Administrator

I’m just checking that you’ve had Graves Disease (hyperthyroidism) confirmed via positive TRab or TSI: 

TRab TSH receptor antibodies 

TSI Thyroid-Stimulating Immunoglobulin

This is important, as TG / TPO antibodies may be raised in Graves or Hashimotos.

I was originally diagnosed as Graves, but later antibodies showed Hashimotos. I was originally only given propranolol too and just monitored. Have you had key thyroid vitamins checked (ferritin, folate, vitamins B12 and D)? My energy improved with a good B Complex (eg Thorne Basic B) and improved ferritin, but please test prior to any supplementation.

PurpleNails profile image
PurpleNails

Your TSH is low. but your FT4 & FT3 are they in range?    

Is this recent test? Were you diagnosed when results higher? 

The TSH (thyroid stimulating hormone) is a pituitary hormone.  It signals thyroid to produce so if everything is working as it should a low TSH usually means high FT4 & FT3 (Free thyroxine & free triiodothyronine) these are the actual thyroid hormones.  

By most ranges yours do not look high + but we need range to interpret accurately.

Low TSH is not a reliable marker & it does not confirm Graves even if FT4 & FT3 were above above range it still does not confirm Graves.

You need thyroid antibody testing:

 TPOab (Thyroid Peroxidase antibodies)

 TGab (Thyroglobulin antibodies) TPO & TG “autoimmune marker” - appears with BOTH Hashimoto’s & Graves.  Hashis causes transient hyper prior to under active.  Graves continuous Hyper.  If Graves Suspected 

TRab (TSH receptor antibodies - measures stimulating, neural & blocking antibodies)

And / or 

TSI (Thyroid-Stimulating Immunoglobulin) MUST be tested. 

Monitoring best approach.  An antithyroid would lower thyroid levels and you don’t need that unless levels are continuous above range. 

Do not stop propranolol abruptly, reduce slowly when you wish to stop.  I was made unwell with migraines when told to stop high dose abruptly.  

Propranolol use gradually depletes magnesium.  I take a supplement each night.  

Important to test Folate, ferritin, vitamin D & B12. can often be affected with thyroid issues and doctors don’t always check them.

Private testing options available if GP can’t / won’t test.  

Lalatoot profile image
Lalatoot

Pink, Those results are more consistent with autoimmune thyroid disease also known as Hashimotos. This is hypothyroidism.

Hadhimotos often starts with a period that mimics hyperthyroidism Graves disease. With true Graves it is more common to see ft4 well into the 40s and higher with ft3 well over 25.

It is not uncommon for doctors to look at the TSH level and assume that because it is so low it must be hyperthoirdism, without considering the thyroid hormone levels of ft4 and ft3 and without doing antibody tests.

To find out if it is Graves disease or Hashimotos you need to have antibodies tested. †his site tells you the basics of antibodies:

testing.com/tests/thyroid-a...

I added the link for reference only and not as a recommendation for testing.

pennyannie profile image
pennyannie

Hello Pinklew and welcome to the forum :

Do you have the results of your first blood test - probably showing a TSH, T3 and T4 reading and ranges - prior to being put on any medication?

Are there also any antibody results, generally written as either a TSI, TR ab, TPO, or a TGab ?

Pinklew profile image
Pinklew in reply to pennyannie

hi ive done a sort of spreadsheet of all my recent tests but there are gaps as i dont think they tested everything each time.

Date TSH FT4 FT3 RAB ESR Test time

08/10/2021 "1.6 (0.35-5.5)" "16mm/h (0.0 - 27.0)"

20/05/2022 "0.01 (0.35-5.5)" "18.7 (10.0 - 20.0)" "6.4 (3.5-6.5)" 1.6 early evening

09/06/2022 0.01 22.5 "42mm/h (0.0-27.0" mid aft

12/06/2022 0.02 15.4 4.9 mid morn

PurpleNails profile image
PurpleNails in reply to Pinklew

what is RAB?

ESR is erythrocyte sedimentation rate (inflammation marker) but unclear.

Pinklew profile image
Pinklew in reply to PurpleNails

i think its thyroid receptor antibodies

pennyannie profile image
pennyannie in reply to Pinklew

I don't understand what are RAB and ESR ?

Graves is said to be life threatening if not medicated so tend to think we are looking at something else - possibly Hashimoto's auto immune disease ?

Pinklew profile image
Pinklew in reply to pennyannie

hi ESR is erythrocyte sedimentation rate (inflammation marker) and rab is thyroid receptor anibodies i think

pennyannie profile image
pennyannie in reply to Pinklew

OK - but I still can't see what I need -

if RAB = TR ab - what is the result and what is the range ?

Pinklew profile image
Pinklew in reply to pennyannie

i have only ever seen this in the results once. It was 20/5 and it was 1.6 there is nothing to say what the range was though. It was just on the endos notes

pennyannie profile image
pennyannie in reply to Pinklew

Ok then - thank you for explaining -

I think this needs clarification and suggest you ask for an official copy of your diagnosis of Graves Disease detailing which antibody was found positive against a range of ?????????

PurpleNails profile image
PurpleNails in reply to Pinklew

Could you please show like this

Date (& time or approx time) 

Item - result & (range)

 Eg TSH 0.01 (0.35-5.5)

The other results do not look like like FT4 & FT3. (Perhaps only ESR was tested?)

PurpleNails profile image
PurpleNails in reply to Pinklew

Is this correct ? 

08/10/2021

TSH 1.6 (0.35-5.5)

ESR 16mm/h (0.0 - 27.0)

-

20/05/2022 (early evening)  

TSH 0.01 (0.35-5.5)

FT4 18.7 (10.0 - 20.0) 

FT3 6.4 (3.5-6.5) 

TRab 1.6 (range?) 

-

09/06/2022 (mid afternoon)

 TSH 0.01  (0.35-5.5)

FT4 22.5 (10 - 22) ? 

ESR 42mm/h (0.0-27.0) 

-

12/09/2022 (Mid morning) 

TSH - 0.02  (0.35-5.5)

FT4 - 15.4 (10 - 22) 

FT3 - 4.9 (3.5 - 6.5) 

Pinklew profile image
Pinklew in reply to PurpleNails

perfect 🥰 apart from i mistakenly dated it 12/6 should read 12/9 . Also i took these last readings off the Endocrinologist letter to gp so unsure if the ranges are the same as prev tests. But as its all the same hospital and area i assume it will be

PurpleNails profile image
PurpleNails in reply to Pinklew

Ranges do change from within labs - it to do with how machines are calibrated so it can’t be assumed the range is same. 

In October your TSH was in range.  It’s likely why FT4 wasn’t tested.

In May you TSH was very low & FT4 high but still in range but your FT3 is only a tiny bit over range.  

The FT4 was slightly over-range in June FT3 wasn’t tested.  if TRab was tested and positive it’s why Doctors are diagnosing Graves.

  Trab measures all antibodies affecting TSH including blocking ones, there’s also neutral & stimulating ones.  The stimulating ones is what causes hyper levels. 

I often see a range of TRab as <1. So over 1 is viewed as positive.  

I think you should also test TPO & TG antibodies.  We would expect them to be elevated as they often are with Graves but if they are very high It might indicate you are affected by autoimmune thyroiditis (Hashimoto’s)

Your latest results show FT4: 15.4 pmol/l (Range 10 - 22) 45.00%

FT3: 4.9 pmol/l (Range 3.5 - 6.5) 46.67%

They are both just below mid range.

Continued monitoring very important &  you are checking for FT4 & FT3 falling as much as rising. As you can see your thyroid levels FT4 & FT3  are “normal” but TSH takes longer to respond & is still low.  This delayed reaction is normal.  Sometimes the TSH takes a long time to recover or stays unreliable long term.  So you’ll need to make sure doctors are going by FT4 & FT3 and not solely by TSH.  sometimes labs only test FT4 & FT3 if TSH abnormal so this is something you’ll have to follow up. 

Pinklew profile image
Pinklew in reply to PurpleNails

this is so helpful. Thank you for taking the time to respond in such detail that i can use with my gp 😀

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