Thyroid UK

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Hyperthyroidism or Grave disease

Hi everyone,

I was diagnosed with Hyperthyroidism however, my autoimmune antibodies for grave was too low so I didn’t have grave disease. Is this possible? To have hyperthyroidism only ?

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Nil15192

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15 Replies

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Lalatoot1 year ago

I did!However, autoimmune hypothyroidism also often starts with a hyper phase and mimics true hyperthyroidism. This phase doesn't last and you become hypothyroid.

It would be best if you could find out what exactly was tested and the results.

Post them on here and we will be able to provide information based on our experiences.

Nil15192 in reply to Lalatoot1 year ago

Free T4 14 pmol/L TSH less than 0.01 milliunits/L

All I know about my results.

Lalatoot in reply to Nil151921 year ago

Nil those results don't look like hyperthyroid. Each result should have a range after it- a set of numbers in brackets which is the lowest and highest that the result should be.Your TSH is very low but your Free T4 is not high enough to suggest hyperthyroidism.

What you need are further tests to include thyroid antibodies test as suggested by PurpleNails

Nil15192 in reply to Lalatoot1 year ago

Got the results over the phone and just managed to get this much, my T4 was around 46 3 months ago now it dropped

PurpleNailsAdministrator1 year ago

I have hyper without antibodies (Graves = TSI or TRab).

I have a >5cm toxic or hot nodule which hyper functioning causes elevated levels. At diagnosis my FT3 was was nearly double the range Graves tends to have much higher levels typically 3 or 4 times the normal range.

You could also test for TPO & TG antibodies as this could indicate a transient hyper. (Then become autoimmune hypothyroid, underactive)

I had a ultrasound of thyroid which detected the nodule and a further uptake scan which specifically looks at which parts of the thyroid are function this confirmed the hot nodule. If all antibodies are negative request a scan.

Have you been offered treatment for your hyper levels? Usually antithyroid are prescribed for continuous hyper. If the rise is temporary then they will naturally drop.

Do you have access to blood test results?

Nil15192 in reply to PurpleNails1 year ago

I take 15mg of Carbimazole

PurpleNailsAdministrator in reply to Nil151921 year ago

How long have you been taking? How often are your levels checked and dose adjusted?

Nil15192 in reply to PurpleNails1 year ago

Been taking it for 2 months now and blood is checked when before i started after a month i started and like 10 days ago

PurpleNailsAdministrator in reply to Nil151921 year ago

Do you have results at diagnosis and current? Usually dose is reduced to stop the levels becoming too low. Initially I was tested 6 weekly.

Nil15192 in reply to PurpleNails1 year ago

T4 was 46 now is 16 other than that I don’t know much as we don’t get a full list of results. I have appointment with my Endo next week they might drop the dosage

Nil15192 in reply to PurpleNails1 year ago

How are your results ? Do you have swelling eyes or bulging?

PurpleNailsAdministrator in reply to Nil151921 year ago

Are you in UK? you can request printed copies of all your results or if in England, practices are contractually mandated to provide online access to digital record. Don’t accept verbal or hand scribbled results you need a printed copy with ranges.

At diagnosis I had suppressed TSH, FT4 of 23 & FT3 of 7.8 most recent results show TSH still suppressed FT4 15.2 & FT3 of 4.4. I found out by going through historic hospital records my TSH has been suppressed for 4 years before.

I began on 20mg carbimazole and now take 10mg, 5mg alternate days.

I do have eye issues. Bulging appearance and mis alignment, very dry also. The specialists has been obstructive stating as negative for autoimmune is not thyroid related. Although I’ve found lots of evidence that those without Graves can have TED . On waiting list for ophthalmologist, more on my profile.

Hugoo1 year ago

Hi,I have Hyperthyroidism without Graves, I have 2 nodules that overproduced. My TSH was suppressed and T4 was over range. Lost weight and had several other symptoms. I have been on Carbimazole since March 2019.

Nil15192 in reply to Hugoo1 year ago

Hi, thank you for you response did you have TED too ? If so did it improve by time ?

Hugoo in reply to Nil151921 year ago

HiAs far as I know I do not have TED.