My Endo thinks I'm fine but I don't feel fine...

[RhubarbAndCustard]

Hi,

I was wondering if anyone would be able to help me with my latest test results for my Graves' Disease. I am on Carbimazole 40mcg, Levothyroxine 100mcg and Vitamin D 800iu daily. My results are:

TSH 1.38

FT4 14.9

FT3 3.8

The Endo is really pleased with my results and has said he will see me again in 3 months time. The trouble is, I don't actually feel fine and my last 2 periods were 2 weeks apart and it's irregular periods which is how I got diagnosed with Graves' Disease in the first place. I am also suffering anxiety symptoms again. I don't know if it's all connected, any help would be great! Thanks x

[shaws]

I am hypo so cannot help you but others who have/had Graves will respond.

It's all a strange new world when we have a dysfunction of our thyroid gland and I hope you feel better quite soon.

[RhubarbAndCustard in reply to shaws]

Thank you

[Alexkjones]

Hi. You are on block and replace treatment which I was on for 18 months for graves. Your blood results are in the normal range according to the wide limits but as you have noticed we don't feel good if our tsh is higher than o.5. Your t3 is a little on the low side also. You could ask to switch to the titration method which just uses carbimazole. I stuck with the b&r and all the grotty and changing symptoms. You won't die but at times you'll feel possibly as if you might. I think the adrenal system plays a part. I experienced sudden rushes of what felt like adrenalin and that was horrible. Stick with it and ride the waves but keep the endo informed of your symptoms. Try and get their email address so you can contact them when you need to. If it gets too unbearable try switching to titration method. Alex 

[Alexkjones]

Ps. How old are you. ? Are you near menopause age? 

[RhubarbAndCustard in reply to Alexkjones]

I am 31 years old and looking to start a family next year but I'll have to wait and see how this all pans out. I've just been to see my Doctor who thinks I'm on too much Levo so I have just been given a prescription for 75mcg instead of 100mcg. I really hope this helps me.

[elderflower2016 in reply to RhubarbAndCustard]

I am not on Block & Replace, but I would say it's counter-intuitive to reduce your Levo.   It would seem to me that your Carbimazole dose is high and is bringing down your T3 level to the lower end of  its range; the levo which aims to raise it  is not compensating enough for the suppression caused by the Carb.  That is why you're having hypo symptoms.   More frequent periods is a symptom of hypothyroidism; hyperthyroidism would make your periods less frequent or lighter in general.  I would have thought it's the Carbimazole that needs to be decreased slightly.

On the titration method, my endo tries to keep my T4/T3 levels at the higher end of the range with the lowest dose of Carbimazole possible. My T3 is currently around 6 and I feel fine.

[RhubarbAndCustard in reply to elderflower2016]

Actually, it was more frequent periods which is how I was diagnosed with hyperthyroidism so I guess it affects everyone differently. I've followed my doctors orders by lowering my Levo and I'll give it a couple of months before going for another blood test to check my ranges again.

[elderflower2016 in reply to RhubarbAndCustard]

I agree that everyone  is affected differently, but your current thyroid profile does not suggest you are currently hyperthyroid.   If anything, your T3 is low and you are not feeling well.

I would have thought the levo needs to be increased or the Carbimazole decreased. 

But see how you get on.  I would advise a blood test in a month's time.

[shaws in reply to RhubarbAndCustard]

I wonder if your GP is 'assuming' you're on too much just by looking at your blood test results. So get a print-out from the surgery with the ranges and put them on a new post for comments.

I think it's a bad habit by doctors to reduce only upon the results.

[RhubarbAndCustard in reply to shaws]

I have just created a new post with my results and their ranges healthunlocked.com/thyroidu...

[mcrossbonfire]

After a lump was noticed on my neck I was diagnosed with hyper. I felt perfectly well at the time. In fact I would say, I was feeling great after two (unrelated) operations. Firstly I took Carbimazole which made me feel awful. I then took Propylthiouracil, which suited me a bit better, but I know I began to become hypo because I had symptoms. My endo, of course, disagreed with me. I began the process of weight gain, tiredness, etc. I had to wait a long time for surgery to remove the lump (which was thankfully benign), because I was never well enough to have the operation! I had repeat chest infections, an episode of Atrial Fibrillation, etc. I was told that I would have a partial thyroidectomy and that I wouldn't need medication after as the remaining half if my thyroid would make enough hormones. I finally had my op in October, and of course stopped the Propylthiouracil. I am now hypothyroid and feel dreadful. My weight has increased so much that I cannot have (yet) a further surgery for another unrelated problem unless I lose 10 kilos. This whole process has been an utter nightmare from beginning to end. I have gone from being a healthy, happy, attractive woman to a fat, miserable, unhappy, and ill shadow of my former self. I wish I'd have known, three years ago, what I do now..............

[mcrossbonfire]

RhubarbandCustard, so sorry, I posted my previous post in the wrong thread.

[RhubarbAndCustard in reply to mcrossbonfire]

That is ok! I read your post and I really hope you start to feel better soon! It's absolutely awful when it's completely out of your control and you feel so unhappy. You have my hugs and sympathy mcrossbonfire. x

[Silver_Fairy]

Carbimazole has a 7 hr (ish) half life so you could try taking it in two doses during the day?

[RhubarbAndCustard in reply to Silver_Fairy]

This may sound like a stupid question but how would that help? Would I notice less symptoms if I did it this way? I was told I could just take the two 20mcg both together :S

[Silver_Fairy]

IT may do nothing! but it may allow less 'spikes'. Do you find your anxiety symptoms show themselves at the same times?

The drop in Levo might be the only thing you need.