Update to "Graves/hyperthyroid - not severe but wish me luck!"

[BridlePath]

Firstly not quite sure how threads work in this forum, seems that adding a reply to a thread doesn't bump it, so have started new thread, apologies if this is not the way to do it. I just wanted to respond to previous comments.

Several members cautioned me that since my hormone levels were not very high I could be experiencing a Hashimoto’s hyper phase. This was the experience of a friend who had an overactive thyroid in her late 20s with goitre: it seemed that the Carbimazole wasn’t working for her so she (reluctantly) agreed to RAI and in the nick of time discovered she was pregnant. She went hypo after the birth and has been takig Levothyroxine ever since. Her father had Hashimotos.

However, I am in my 60s and can think of no one in my family who had this condition.

Have received results of the TRAb test arranged by my consultant who told me it confirms Graves diagnosis:

TRAb 31.1 U/L (less than 1.0)

I also had a Medichecks Advanced Thyroid Function test (with blood draw, test done 8.30am, fasting):

TSH <0.005 (mIU/L (0.27–4.2)

Free T3 18.8 pmol/L (3.1–6.8)

Free Thyroxine 42.6 pmol/L (12–22)

Thyroglobulin antibodies 19.7 kIU/L (0–115)

TPO antibodies 134 kIU/L (0–34)

Ferritin 157 ug/L (30-332)

Folate 16.8 nmol/L (7–35)

Vit B12 63.5 pmol/L (37.5–187.5)

Vit D 143 nmol/L (50–250)

So free T4 has risen from 30.7 and free T3 from 10.22 since 14 August.

I started taking Carbimazole 20mg daily a week ago, after the Medichecks test was done. Am feeling fine so far, though the two pounds I’d managed to put on has vanished.

Next blood test will be at GP in six to eight weeks time.

All comments welcome and appreciated.

[StitchFairy]

Replying to a thread does bump it up the feed, but at busy times it will still get missed.

Sorry I can't help as I know nothing about Graves.

[helvella Administrator]

Thread continued from:

Graves/hyperthyroid - not severe but wish me luck!

healthunlocked.com/thyroidu...

PurpleNails

greygoose

Fruitandnutcase

SlowDragon

[BridlePath in reply to helvella]

Thank you, helvella!

[humanbean]

seems that adding a reply to a thread doesn't bump it

Above the title of your post there is a list of options :

"Home-Posts-Members-About"

Click on Posts and there is a new list :

"Sort posts by:"

"Latest-Unanswered-Popular-Pinned-Recently active-Polls"

If you click on "Recently Active" you'll see a list of the latest new posts added to the forum AND the latest threads to have had replies added to the forum.

Hope that is clear.

I rarely view the forum with anything else other than "Recently added".

[BridlePath]

Yes that is helpful, thank you.

[PurpleNails Administrator]

FT4: 42.6 pmol/l (Range 12 - 22) 306.00%

FT3: 18.8 pmol/l (Range 3.1 - 6.8) 424.32%

Your levels are quite high. 3x / 4x normal range is typical of Graves. So I’m not sure why you’ve been given impression they don’t appear severe.

Your TRab is positive which is accepted marker for Graves & yes there can be an overlap with antibodies but I think carbimazole it correct for you at this stage.

That’s not to say you don’t need further monitoring. Levels might start to drop too much in which case carbimazole will need to be not just adjusted down but stopped altogether.

[BridlePath in reply to PurpleNails]

PurpleNails, thank you for working out the percentages, that illustrates the results very clearly (I am not very maths literate!) I am not particularly symptomatic and at time of diagnosis my levels sat lower so in comparison to other people with Graves' disease I am not so badly affected which is why I said "not severe" . However, it seems that this is often the case with older age groups, symptoms are more subtle and can creep up on you somewhat. I was somewhat taken aback at the rise in levels over a month, though.

I am taking the Carbimazole, my GP surgery have noted that I should have blood tests every 6-8 weeks and will contact me when it is time to arrange one. It is already in my notes that the dose should be reduced at a certain point, so everything is being done by the book.

[pennyannie]

Hello again :

I can't really add much to what I have already written :

Hopefully the AT drug will start to semi-block your new daily thyroid hormone production keep rising -

and your over range T3 and T4 will start to fall back down and into the ranges once again.

Just be aware that the AT drug will need reducing down as your T3/ T4 start coming back into range -

as symptoms of hypothyroidism - equally if not more disabling - can be experienced even when within the ranges -

so you need to try and maintain your T3/T4 at around mid - point within the ranges.

All the AT drug does is ' buy you time ' while we wait for your immune system to calm back down and hopefully your thyroid reset itself without the need for any drugs.

I have already sent you the research etc that I have collected on my journey with Graves.

To read all your have ever written and all your replies simply press your Profile Icon sitting alongside My Hub - Chat - Post - Alerts - Menu Icons - on this page - and which is now facing me - top right on my laptop.

To read anybody else's Profile simply press their icon which sits alongside anything they have written or replied to:

[BridlePath in reply to pennyannie]

Thank you, pennyannie, I have bookmarked and read the articles you linked to.

I shall aim for mid-point - I have no desire to become hypo, having read your distressing experiences. Interesting that you developed dental problems, I am having a struggle with periodontal problems which worsened this year, being kept at bay by regular intensive sessions with the hygienist. My dentist just nodded when I told him I had Graves, think he had already spotted something was amiss.

[pennyannie in reply to BridlePath]

My dental problems were caused by having had no saliva for some 18 months - this is a known side effect of RAI thyroid ablation - there are now various research papers detailing this fact - but no one tells you any of the adverse effects, which may or may not happen to a small minority of patients - which I find totally unacceptable.

and back in 2005 there wasn't the ease of reference and more especially when ill and not thinking straight one should be given an honest conversation and there should be full disclosure of the medical implications of any treatment option.

When metabolism runs faster, or slower than normal all the body's normal processes of repair, replenish and restore which happen when asleep - if you get any sleep - will also be affected :

This also applies to digestion and extracting key nutrients from food and why many of us, even when optimally medicated need to continue to supplement vitamins and minerals.

[BridlePath in reply to pennyannie]

I am grateful you shared that with me, RAI would probably make it impossible to keep my mouth as clean as I need to. I couldn't agree more about the honest conversation, that's the worst of being ill, you need to advocate for yourself when you feel least capable of doing so.

[pennyannie in reply to BridlePath]

Exactly - but at least now, with this forum and the research to hand you can be much better informed than many of us were, 20 odd years ago :

[Forestgarden]

Hi there, I can imagine the symptoms you are experiencing and the way your mind is racing, but that will improve with the carbimazole. I remember standing on the scales and seeing my weight plummet each day! Make a daily check of how you are feeling, maybe rate your symptoms from 1-5, and you will see a steady improvement over the coming weeks. It's very easy to over-shoot the sweet spot, and become hypo instead of hyper. When you recognise that might be happening you need to reduce your carbimazole, but don't stop it totally. It can take a considerable time to reach a dosage where you feel 'normal' and once you get there, your endo will probably try to take you off carbimazole completely to see if you maintain this state - but, don't be bullied into this! Stay on the carbimazole. Have a read of this abstract. Good luck academic.oup.com/jcem/artic...

[BridlePath]

Thank you Forestgarden. The weight loss is a bore, I went into M&S today to buy a couple of things to boost my wardrobe (my clothes are all hanging off me) and I didn't enjoy seeing my sticky out vertebrae in the mirrors! Keeping a daily check is a very good idea, will be so rewarding when I feel more my usual self, and easier to spot should I drop into hypo.

That link is very interesting, helpful should I need to get all my ducks in a row.