Graves, on carbimazole for 10 months

[Pasionaria]

Not sure if you can actually see this, it's very small. I was diagnosed with Graves (Trab +ve) in April last year and have been treated with Carbimazole. It has been a bumpy ride but I am towards the end of my menopausal journey after years of severe PMS so who knows. I have been on Sertraline since Nov which has been hugely helpful. After a couple of months feeling great, I have now been feeling tired for the last two weeks or so. By chance, my GP ordered a blood test, and the results seem to have changed direction. I am due to see a consultant, who of course can order T3 and Trab, mid March. What do you think? Could my latest results point towards remission or am I being optimistic without reason? Could I be tired because I am going hypo? Last time in Nov the endo said he would test my PTH because my adjusted calcium was just under range (not for the first time). Since Dec I have been supplementing VitD+K, Magnesium glycinated and Yarrow B12 complex.

[helvella Administrator Thyroid UK]

Click on More at the bottom of your post - then Delete.

If you have a large image, attach it to a reply (e.g. post then immediately reply to yhat post).

Images on top level posts are fixed size and limited.

Images on replies can be larger and apply a zoom option and are usually large enough to be legible.

[helvella Administrator Thyroid UK in reply to helvella]

Or you can Edit your post and remove that image and replace it by another.

[Pasionaria in reply to helvella]

Sorry, is it better?

[helvella Administrator Thyroid UK in reply to Pasionaria]

You've certainly managed to change it. But it is still difficult to read.

Is it a screenshot? Maybe if you can zoom in before doing the screenshot?

If I open it in a separate tab, then zoom in about four steps, it is readable but a bit fuzzy.

[Pasionaria in reply to helvella]

That is what I did, zoom in Excel as far as my PC screen goes, screenhost, and then save as picture. Not sure how else to post a table

[helvella Administrator Thyroid UK in reply to Pasionaria]

Just been doing some testing.

Try this:

Increase the font size in Excel. (E.g. if 12, try 16.) Increase column widths , if needed.

Select the area - even if you have to scroll off screen. Or even zoom your view out before selecting.

Copy (Ctrl+C or Command+C).

Paste into a reply.

That seemed to work for me.

[Pasionaria in reply to helvella]

Thanks for your help, I have now tried it!

[Pasionaria]

This time copying straight from Excel into here after changing font to 16 and zooming after it goes out my screen

Test results table

[helvella Administrator Thyroid UK in reply to Pasionaria]

That is fantastic - very easy to read.

(Trying to help with computer issues via posts is not the easiest thing for either person. Well done!)

[Pasionaria in reply to helvella]

You are good!

[tattybogle]

i managed to read it ... 'remission' is perhaps a bit optimistic until you see what your TRab are currently doing.. but i think it does look like 5mcg Carbimazole might be a bit too much now , and perhaps 2.5mcg should be tried next ? can you perhaps contact endo before march to ask ?

certainly the fT4 level is now a bit under range , and that would definitely explain feeling hypo . and the TSH has made a big jump up from 0.2/ 0.3 in Oct/Nov to 1.67now

Which does fit with 5mcg being just a bit too much , as TSH was steadily rising in Oct / Nov on 5mcg .. and fT4 / fT3 were falling .

[Pasionaria in reply to tattybogle]

Thanks, yes, I think I will email the consultant's secretary today.

[PurpleNails Administrator]

In April your thyroid levels were high but ever since your thyroid levels have been really low.

By may FT4 was under range.  You can’t rely on TSH it’s not reflecting levels. 

You’ve been on low dose of carbimazole but FT4 & FT3 need to be mid range - ie the lowest dose to keep you in range.  Under range FT4 mean too high a dose of carbimazole. Either reduce by splitting pill or take every other day.

FT3 really need to be tested too.  Trab is positive & you have eye issues? but this is unusual for Graves having very short term high levels, then such low levels.

You could request a ultrasound scan for doctors to get better view of thyroid - although doctors may say not necessary.  

[Pasionaria in reply to PurpleNails]

Yes, I thought it strange that my T4 and T3 went down so fast on a non high dose of Carbimazole. My eyes are extremely dry but whether because of Graves or another autoimmune disease (possibly Sjorgrens) I can't say because I am still waiting to see the Ophthalmologist. I so much hope that when they test at the hospital next month Trab has gone down!

[Buddy195 Administrator]

If you suspect thyroid eye disease (TED), I would start a supplement of selenium as 200ug for 6 months has been shown to help in mild/ moderate cases. For dry eye, use preservative free drops liberally such as HycoSan or Hyloforte.

[asiatic]

Like you I went hypo very quickly on low dose of Carbimazole and was put on block and replace. After 7 years my TSH is slowly climbing into range on a reducing dose of Carb which I believe means I am heading towards remission. At the same time I have had to increase my levothyroxine which may indicate a change from stimulating TRab to blocking TRab causing hypothyroidism which according to Elaine Moore happens in about 20 % of Graves patients and may be transient. I would try reducing to 2.5 mg. for a while. There is no rush to stop as evidence now shows the longer we stay on ATM the better chance of a lasting remission

[Pasionaria in reply to asiatic]

I might try reducing. Thanks!

[pennyannie]

Hey there again :

So it looks like you are now in hypothyroid territory and need the AT dug reduced :

Your vitamins and minerals haven't changed much and ferritin still very over range - has this been looked into at all - it could be inflammation driven but I can't see a result for that.

The NHS talk of remission but unless the antibodies are rerun it's all just a guess as with Graves you can have periods of relative wellness when the blocking and stimulating antibodies burn each other out and temporarily leave you alone but it's not necessarily the end of this first phase of the disease.

The most current research is suggesting the longer the patient stays on the AT medication the better the outcome for the patient -

pubmed.ncbi.nlm.nih.gov/338...

Have your seen a specialist now regarding your eyes and I hope the Preservative Free drops, potions and lotions, and overnight gunk have given you better overall comfort.

[Pasionaria in reply to pennyannie]

Thanks! The vitamins and minerals test was taken privately before I started supplementing, I will try and ask the consultant to test them next month, I hope they are better. I have been worrying about the ferritin but because it was private tests, (my CRP was normal but I do have rheumatoid factor positive and have been seen for other possible autoimmune diseases), no doctor has seen it yet; again, I should probably mention it to the consultant. I read here somewhere that ferritin goes up in older women though and that the ranges might not be reliable in that sense. I moved to preservative free stuff for dry eyes after all the advice here and it was better but still did not feel that good, the best thing for me (also advised here) has been the Optase heat mask. The have cancelled my opthalmologist appointment twice! Third time lucky I hope. I have been reading the research about keeping on AT meds so I don't want to rush it, however, it might be that I need to continue on a lower dose.

[Pasionaria in reply to pennyannie]

Sorry, I forget things! You are right that my vit D levels had not improved, so I upped my dose in Dec when I started Magesium and B Complex.