Thyroid UK

New : ?advised please post thyroid storm

Hi , I have been on the sidelines reading posts for just over a year or so. I am greateful for all the information that I have acquired over that time. But I am a bit confused at the moment and wonder if anyone can help me? This is my first post , so please bear with me. I was first diagnosed as hyperthyroid in 1986 and started on carbimazole, so long ago I cannot remember how much.

After having 2 children and returning to a normal thyroid level, the carbimazole was stopped and I seemed normal. I was told at the time that if my symptoms returned to go back to my GP.

. Fast forward to May 2016 when I had a severe bout of tummy flu, where I collapsed and had 10 days in hospital. As an inpatient I had several blood tests, scans and angiograms. My diagnosis was a thyroid storm. Which resulted from several nodules on my thyroid. The cardiologist has since discharged me to the endocrinologist,who I find very difficult to deal with. But that seems to be the norm. They are now trying to bully me into having radium treatment, even though the last scans have shown that the goitre nodules have disappeared.

I was commenced in May 2016 on carbimazole 80mgs per day. Which has been reduced to 5mg every second day. But after last trip last week the dr increased it to 10mg daily for one month , the 5mg until I return next September. As I felt wrecked on the carbimazole, I asked to go on another tablet, but no go from the doctor. I was threatened with a reduction in my white blood cell count.

So I have stopped taking my carbimazole altogether,and feel brilliant. It has been 10 days now, and I haven't felt so good in years. But I am slightly concerned as I do not know if this will lead me back to A&E as the thyroid storm in 2016 was a bit scary.

Can you please have a look at my bloods? They will only do T3 if you are an inpatient. So I will post the 1st and last posts I live in a remote part of the British Isles, so I am not sure if horizon is a possibility for me. First blood test while as an inpatient, June 2016

Free T4 81.4 pmol/L (10.5 to 22.0)

Total T3 4.87 nmol/L (1.08 to 2.90)

TSH<0.02 mIU/L (0.27 to 4.20)

Anti TPO Abs 1510 IU/ml 0-40

My latest 23/1/2018

Free T4 18.5 pmol (10.5 to 22.0)

TSH <0.02mIU/L (0.27 to 4.20)

Many thanks for looking at theses. The endocrinologist seems to be more focuses on my cholesterol levels than anything else but that's another story. I wold be greatful to know if I Have graves or hyperthyroidism or hashimotos . I take a good multivitamin and stick to a gluten free diet. Also take vit D and selenium.

5 Replies
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Your TPO level indicates you have some form of auto-immune thyroid disease. It could be Graves', but you'd only know for sure if you had TRAb measured as well.

Given your history, I'd be careful about stopping your medication just like that. Your TSH is still suppressed and Free T4 is higher than average. I would expect your Free T4 to continue to rise without any Carbimazole.

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Many thanks elderflower 2016, I have never had my TRAb measured, but suspect that because my hyper symptoms come and go that I may have graves. I will be careful about monitoring my symptoms, and recommence the Carbimazole if needed. Thank you for the reply.

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I'd recommend getting a blood test in a month's time to see if your Free T4 has increased further. You are feeling fine at the moment as it is still within range.

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Seems to me you have Hashi's, with that TPO result. But, as elderflower says, you need to have your TRAB or TSI antibodies tested. And, that is what you should be pushing for. GPs and Endos are far too fond of 'diagnosing' Grave's just on the basis of a high TSH, without ever testing to see if you really do have Grave's - which is easy enough to do - and giving the patient carbi which they do not need. Proper testing is essential, but it seems it is getting more and more lax.

The TSH means nothing without the FT3 to back it up. Your FT4 is no-longer over-range, so the odds are your FT3 isn't, either. They should not be suggesting whipping out your thyroid without proper testing. That is negligence. And, if your cholesterol is high, it's not another story, at all. High cholesterol is a hypo symptom, and used to be the symptom on which hypothyroidism was diagnosed, before they invented the TSH test.

If your doctors refuse to do the FT3, you really should have it done privately. It is so important to know your level. But, I don't know if you can have the tests for Grave's done privately, so you need to push for those to be done before you make any decisions about having your thyroid out. :)

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Thank you grey goose, I appreciate you taking the time to look at my results. It is funny that you mention Cholesterol, as my endocrinologist seems to be obsessed with it. My cholesterol on admission to hospital in May 2016 was 3.2 nmol/l (3.0 to 5.0) Once commenced on carbimazole it shot up to 7.0 nmol/L (3.0 to 5.0) Commenced on statins. Cholesterol went up to 9.0 memo/L (3.0 to 5.0) developed dry eyes saw a opthmoligst who stopped the atrovastatin, much to the endocrinologist annoyance. I am still confused as to which way to turn. But I do know that I feel a hundred times better off the carbimazole than on it. So I will make an appointment with the GP and get the suggested blood tests done.

Many thanks

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