Hyper / Graves, Help please with 3rd blood test results

[Joy333]

Hi everyone, I'd really appreciate a bit of advice on my latest blood results. Since reducing carbo from 40mg to 20mg nearly 2 weeks ago I've been feeling absolutely jiggered. Is this because my thyroid levels have come down or do you think I'm now needing to reduce carbo again and possibly propranalol (I'm on 80mg) ?

My levels appear to be coming down nicely now but feeling totally done in and not functioning very well.

8th may 2013 - first bloods, put on 20mg carbo & 30mg propranalol

TSH - 0.01 (0.4 - 4.0)

T4 - 41.3 (9.8 - 18.8)

T3 - 24.2 (3.3 - 6.1)

1st Aug 2013 - 2nd bloods, put on 40mg carbo for 4 weeks then reduce to 20mg. Propranalol upped to 80mg

TSH - 0.01 (0.4-4.0)

T4 - 39.6 (9.8-18.8)

T3 - 18.3 (3.3-6.1)

5th Sept 2013 - 3rd bloods

TSH - 0.01

T4 - 21.2 (9.8-18.8)

T3 - 11.4 (3.3-6.1)

Any thoughts and advice greatly appreciated x

[Hennerton]

Hi, My levels were higher than yours to begin with but like yours, came down quickly on Carbimazole and after two weeks, the Propranolol was stopped and I did not need it again. Are you under the care of your local hospital, combined with your GP? I was and I mostly spoke to my GP who contacted the endo at the hospital and told me what dose of Carbo to take and to stop Propranolol. I then went to see a private endo and dealt with him through his secretary if I felt my levels were wrong. I was very aware of what was happening in my body and probably drove my GP practice crazy by constantly demanding blood tests but I was always proved right and Carbo needed adjusting every few weeks. I think if I were you I would phone GP tomorrow and ask them. They take Graves very seriously and I doubt you will be fobbed off. Good luck!

[Hidden in reply to Hennerton]

I agree with Hennerton, you need close monitoring with Graves. The one thing I would say from your post that struck me was your big jumps up and down on the carbimazole, from 20 to 40, then back to 20. It's a pretty strong drug, I can only tolerate small changes in dose at a time, say 5mg up or down. Ask the doc if you can titrate a bit more slowly up and down and it might make you feel a little better.

Try and get bloods done monthly, this is how often I had them with my private endo (on 2 monthly now I'm euthyroid). You could just go into your GP every month and say you don't feel right, I would imagine they would be obliged to do the blood tests. I can't comment on the propranolol as I was never on it.

Finally, try and get your vits and minerals tested (B12, folate, iron/ferritin and vit D). The body has a greater demand for these things when hyper, and as with Hashi's, we are also likely to suffer from low stomach acid or coexisting autoimmune pernicious anaemia.

H x

[Hennerton in reply to Hidden]

I agree re the size of your dose adjustments. As Hamster says, it is better to do it by 5mcg each time, rather than huge jumps and reductions. Hope you get good help soon. x

[Joy333 in reply to Hidden]

Thank you so much Hampster. Good advice about getting bloods done monthly. I wonder Hampster, did you get your white blood cells tested after being on carbo? The reason I ask is that I got them tested before going on carbo but I was reading last night they should really be done again? As I feel exhausted and generally fluie x

[Hidden in reply to Joy333]

I always have a full blood count done with my thyroid function tests, you should have this too? If they're not doing this you should insist on it. It's how they monitor for neutropenia and agranulocytosis. Are you seeing an Endo, or just your GP?

I have a low end of the range white blood count anyway, I think this is fairly common in Graves and in B12 deficiency (which I also have).

H x

[Hidden in reply to Hidden]

Sorry, just seen your reply to Hennerton re Endo. If you're not feeling well you should ask for blood tests straight away.

[Joy333 in reply to Hidden]

Thanks Hampster I will do. Normally I'm just tested for tsh, t3 & t4. I feel that something is definitely not right and I should be feeling better with my levels coming down instead of feeling yuk as I do. I have a multi nodular goiter too and for all the world it's like it keeps getting infected (if that can happen, I really don't know), it changes size and shape so weird x

[Hidden in reply to Joy333]

Sounds to me like they should be taking better care of you. Good luck tomorrow. x

[Joy333 in reply to Hidden]

Thanks for all your good advice Hampster, it's really appreciated x

[Joy333 in reply to Hidden]

I managed to see the locum Gp today, he was very kind and took his time. He wonders if my levels are rising again as heart beat is over 120 and blood pressure up despite being on betablockers. He wanted to put me up to 30mg carbo but I said no due to fears of becoming overmedicated. He did agree with this and with advice given on here that i should have smaller decreases in med. He also agreed to full blood tests including white cell count however reception couldn't fit me in with the nurse until next Mon. X

[Hidden in reply to Joy333]

What a ridiculous wait for bloods, it only takes a minute. Is it worth asking them to put you top of the list for cancellations? Failing that, if your health deteriorates further you should really just go to A&E. Sometimes it is the only way to get medical attention.

[helvella Administrator in reply to Hidden]

In some areas you can (with suitable transport, time, etc.) have the blood drawn at a local hospital. That is what I always do so that I can get it drawn as early as possible and more or less consistently t just after 08:00.

Rod

[Joy333 in reply to Hennerton]

Hi Hennerton, thanks so much for taking the time to reply. Yes I'm under an endo, at my first appointment he upped the carbo to 40mg for 4weeks and upped the propranalol to 80mg, 2nd appointment in November.

I'll give the surgery a bell tomorrow. X