Seen endo, update on taking carbimazole

[ja4ne]

I saw the endo last week and told her I did not want the radioiodine treatment, she could not understand why not. I asked if I could stop taking the carbimazole tablets completely and she said I could stop for 4 weeks then have a blood test but if I get palpitations to get in touch with my GP as it will be levels rising and could affect my heart and bones. I told her how awful I felt (feeling cold, weight gain, very depressed etc) she said I did not have an underactive thyroid. I am a bit confused as I thought these are symptoms of being hypo.

[helvella Administrator]

The words are used without proper and consistent definitions.

If you take "hypothyroid" as not having enough thyroid hormone in your blood, reaching your cells, then you could well be hypothyroid.

If you take "hypothyroid" as having a thyroid gland which cannot produce enough thyroid hormone, you could well not be hypothyroid. When the current (artificial) limit on your thyroid is removed, by no longer taking carbimazole, it will likely be able to produce enough thyroid hormone.

At times we have seen other words like "hypothyroxinaemia" used. That expressly means not enough thyroxine in the blood (and might include not having enough T3 - an arguable point).

Language does matter.

[ja4ne in reply to helvella]

Thank you for the explanation helvella

[SlowDragon Administrator]

Did you ever have high TSI or Trab antibodies?

Previous post

Oct 8th,

TSH 0.83 (0.30-4.50), T4 14.7 (11-22), T3 4.2 (3.1-6.8)

these results are with taking just under 1/4 of a 5mg tablet of carbimazole from the last blood tests taken on

21st August

TSH 0.99 (0.30-4.50), T4 11.6 (11-22), T3 4.3 (3.1-6.8).

A year ago when taking NDT

taking 1/4 of a 60mg ndt tablet until a week before the blood tests.

TSH <0.02 mU/L (0.30-4.50),

T3 11.5pmol/L (3.1-6.8),

T4 26.4 26.4pmol/L (11.0-22.0,

TRAB <1.0 IU/L (1.0-1.8

Have you ever tested positive for high TPO or high TG antibodies (hashimoto’s)

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you taking

[ja4ne in reply to SlowDragon]

Trab was <1.0IU/L (1.0-1.8) when tested, TPO 10.6 <34 KIU/L and Tg 17.5< 115KU/L, vitamin D 91 25-150nmol/L, ferritin 91 ug/L 23-400, B12 969ng/L 197-771, am taking B12, folic acid, iron sachets, vitamin D3 and K2.

[PurpleNails Administrator]

Has endocrinologist diagnosed you based on low TSH. Because FT4 & FT3 & antibodies do not suggest hyper.

What was the specialist report on uptake scan you had? This can be definitive of thyroid funtion as image shows level of funtion. Report should be based on image finding not blood test results.

Bone thinning & heart issue occur after prolonged high FT4 & FT3. If endocrinologist knows this, which they should, then telling you you are at immediate risk sounds like they are trying to scare you.

[ja4ne in reply to PurpleNails]

Endo diagnosed me in May 2024with TRab negative hyperthyroidism since September 2023 , blood results in January 2024 showed TSH <0.02mU/L, T4 24.7pmol/L (11-22), T3 10.1pmol/L (3.1-6.8), the results of the scan said 99 MTC thyroid uptake scan showed a total uptake of 1.2% and the uptake is homogeneous in both lobes of the thyroid. It has frightened me a little when she said about levels rising and can affect my heart. Thank you for your help

[PurpleNails Administrator in reply to ja4ne]

So uptake is uniform throughout thyroid - no “hot spots” or nodules. Is 1.2% a high uptake?

You’d need the expected range - a % calculation would vary depending on timing & method used.

Sounds low to me, does it say the uptake is increased?

[ja4ne in reply to PurpleNails]

I don't understand anything about thyroid uptake, it does not say anything to say the uptake is increased.

[PurpleNails Administrator in reply to ja4ne]

Was this in a letter? Drs often summarise the report. Obtain a copy of the scan report if possible direct from hospital department.

If a nodule or nodules were present it would be visible on scan image. If not positive for autoimmune, no hyper nodules are showing. No continuous hyper levels either it really does look dr is going solely by TSH.

[ja4ne in reply to PurpleNails]

It was in a letter that the endo sent to me PurpleNails, she said the scan showed something about the total uptake of 1-2% and I had an overactive thyroid, I can't remember her saying about a nodule. I had a scan back in approx 2015 and it showed a difuse nodule or something.

[PurpleNails Administrator in reply to ja4ne]

Diffuse thyroid means enlarges enlarged thyroid. (Goitre) it can include nodules. Seems odd your ultra sound from years ago highlights nodules but recent report doesn’t.

Most nodules do not function. If they hyper function you’d expect elevated FT4 & FT3 & confirmation from uptake scan.

If you previously look NDT even a low dose it will likely lower TSH & your TSH can remain low & unreflective of Free T4 & T3 levels.

[ja4ne in reply to PurpleNails]

Thank you for the explanation PurpleNails, my tsh when on ndt was usually 1. something.

[pennyannie]

Hey there again :

OK - so let's see how you get on - I think technically - if your thyroid blood test results are in the ranges somewhere, anywhere - you are not ' seen ' as hypothyroid -

Hypothyroid is in the low ends of the ranges - especially in the T3 range -

and once the AT drug fully out of your system we hope to see your hypothyroid symptoms alleviated and T3 and T4 thyroid hormone production increase -

I doubt you will be bouncing back as you were already hypothyroid prior to this ' blip ' -

Fingers crossed you'll start to feel more like your old self soon - with or without the mystery goitre and nodules that now appear to have disappeared !!

[ja4ne in reply to pennyannie]

Do the blood results show the nodule has dissapeared pennyannie, also is T3 of 4.2 (3.1-6.8) considered low, thank you for your help

[pennyannie in reply to ja4ne]

I'm sorry but I have no idea - Purple Nails comments above are more relevant as she has a nodule - I doubt it with an active with a T3 at just around 30% through the range :

I'm just cross this endo, has, yet again, made alarmist comments to frighten and scare you just because you haven't fallen in line and agreed to the hospital treatment policy of RAI thyroid ablation.

Extremes of both an overactive and an underactive thyroid when not medicated for any continue length of time can cause, in some people, bone and heart health issues.

But that is not where you are now - and having already been hypothyroid - have an idea of what works best for you should you find your own thyroid hormone production low in the future -

and similarly- if you find yourself becoming a little ' hyper ' you likely have a nodule -

which can be treated long term with an AT drug as is, I believe PNail's situation.

It does not justify ingesting a toxic substance that is known to be taken up by other glands and organs ( to a lesser extent ) in the body - and losing your thyroid as treatment for primary hypothyroidism- as you may have guessed - is lacking.

Maybe send this endo a copy of ncbi.nlm.nih.gov/pubmed/306... and ask her - what would she do in your situation ?

Take care - we are here to bounce off - should the need arise :

[ja4ne in reply to pennyannie]

Thank you pennyannie for all your advice, I do appreciate it, I was getting a bit panicky thinking about the levels rising quickly and harming my heart.

[pennyannie in reply to ja4ne]

No worries -

You know what to look out for - and if push comes to shove you can start the AT drug again - but insist on PTU so not to have these horrible side effects.

Onwards and upwards :

[Sparklingsunshine]

Perhaps you should have been brutally honest and replied that hypothyroidism after RAI means you will be shunted back to the " care" of your often poorly informed GP and you'll be stuck on Levo, which doesnt suit everyone, with no option to try NDT, and a lot of medical establishment opposition to prescribing T3.

T3 provision is very much a postcode lottery. Unless your Endo can provide a written guarantee that she will personally provide you with NHS T3 in the event that you are symptomatic on Levo monotherapy.

In a nutshell shoddy thyroid care, they push RAI for their own waiting lists and workload, not your health.