New Blood Results

[Hugoo]

Hello again

Have had my next set of blood results. Blood test was 17th July at 8.00 am.

After leaving several messages on Endo secretary phone finally given basic figures. She wrongly assumed I had already been contacted with them.

Just as a reminder I am Hyperthyroid with ( so I have been told) no autoimmune issues and had a scan 14th June which still haven’t had results of. Started Carbimazole in Feb this year.

TSH 5.6

T4 9.3 Range 7.00-20.00 pmol/

T3 4.9 Range 3.80-6.70 pmol/

I have had my Carbimazole reduced from 10mg to 5 mg per day.

Next Hospital appointment is 25th September 2019.

Just wondered what you think of these results please.

Thank you

Best wishes

[ling]

What's the range for the TSH?

The scan was to check for nodules?

How are you feeling right now?

[Hugoo in reply to ling]

The range for TSH is 0.35 to 5.00 mu/L

I feel shaky, emotional,anxious and slowly putting on weight.

Feel glad they have reduced the medication.

Thank you

[ling in reply to Hugoo]

The scan is for nodules?

Has the doctor said you have nodules?

Carbimazole is also prescribed for nodules causing hyperthyroidism.

You should also have your TPO and TG antibodies tested for Hashimoto's.

Prior to this, your symptoms had subsided?

[Hugoo in reply to ling]

Dear Ling

The scan was to look for nodules. I’m having problems trying to get someone to tell me how this went.

In January my Thyroid Peroxidase antibody level was 5 >49 in/mL

In April my TSH Receptor antibody level was 0.4 0.00-0.90 u/L

?

A lot of my Hyperthyroid symptoms have improved i.e heart rate has come right down, night sweats have gone and swallowing a lot easier.

Now I’m more tired, low mood and anxious again.

Guess I will have to wait until September and my next appointment

Thanks for your time again.

[ling in reply to Hugoo]

Good news is TPO negative as well as TRAb. So no autoimmune thyroid disease.

That leaves the scan results. So very important to get those. Nodule/s could be causing the havoc.

As with all hyperthyroidism, stress less, rest more, eat healthily, stay well hydrated, cut down anxiety, don't overdo physical activities.

Good to hear the major serious symptoms are in check.

Perhaps the carbimazole may need a little tweak, but consult the doctor for that.

Would a beta blocker help with the anxiety etc?

God bless you, take care.

[Hugoo in reply to ling]

God Bless and thank you

[Hugoo in reply to ling]

Ling I hope you don’t mind me contacting you again.

I have rung the Endocrine dept and found out that the scan showed Multiple Active Nodules. The report said nothing to worry about but will need radioactive or surgery treatment. Will get a letter in post next week. Have to wait until September to discuss.

Does this make more sense of these results?

Thank you.

[ling in reply to Hugoo]

You mean the blood test results? Is there something about the blood test results that puzzles you?

Multiple active nodules, with the emphasis on "active", mean these nodules are producing thyroid hormone which is causing your hyperthyroidism.

If you are interested in finding out more, this Mayo Clinic piece is pretty informative. It covers also treatment, of which your doctor, I believe, suspected active nodules could be causing your hyperthyroidism, and hence, put you on the carbimazole.

mayoclinic.org/diseases-con...

While the report said nothing to worry about, I guess you should ask if the nodules need to be biopsied.

[Hugoo in reply to ling]

Thanks again

Will be in contact in September!

[Hugoo]

Hi

Feel different. Anxious and emotional again. Joints in one of my hands really hurt. See what the reduction in Carbimazole does although I expect it will take a while to adjust.

Thank you.

[fibrolinda]

Those results are hypo not hyper? I clearly know nothing about graves but suggest you repost as ( hyper Tsh 5.6) so those who do can help.

[Hugoo in reply to fibrolinda]

Thank you for your reply

I find it all very confusing.

[Ginny52]

I agree with fibrolinda. My experiences with endocrinology did nothing to persuade me that they know what they’re doing, and I would have thought thr Carbimazole should stop at once.

[fibrolinda]

Going to notify a couple of members who know about graves who will hopefully help.

greygoose and Valarian

Hope you don't mind guys

Linda

[Hugoo in reply to fibrolinda]

Thank you

[Valarian in reply to Hugoo]

Hi Hugoo

I have Graves', but I've not really had a problem with nodules, other than a swollen thyroid when I was first diagnosed.

Although your FT3 and FT4 are still within range, they are pretty low, which is why your TSH is so high. When our thyroid levels are low, the pituitary gland manufactures TSH, which in turn signals the thyroid to make more thyroid hormone (FT4, which is then converted into FT3). As your thyroid levels get closer to where your body wants them to be (we're all different, but typically this will be around the middle of the range), TSH will reduce, typically to 1.0, or a bit less.

Your thyroid levels are obviously being kept in check by the carbimazole (which is what it's supposed to do). . Assuming they halved your carbimazole from 10mg to 5mg/day as a result of the tests you had done in July, it looks like they are hoping this will be sufficient to keep your nodules under control without your thyroid levels dipping below range. The reduction in dose may take a few weeks to take effect to the extent that you will notice your symptoms have improved. You should have another test prior to your next endo appointment, but if your symptoms get worse, paticularly if they are different - eg you feel cold when everyone else is warm - then you can ask your GP if the test can be brought forward.

This link gives you some info on treatment of nodules:

btf-thyroid.org/information...

There are also people here who are/have been treated for nodules. It might be woth posting again with 'nodules' in the title. They will be able to help you with questions to ask your endo at the next appointment.

[Gingernut44 in reply to fibrolinda]

Hi fibrolinda - the results show no Graves but nodules

[Greekchick]

Hi Hugo,

I have Graves and was on Tapazole for two years prior to TT. What has happened to you is that you are now somewhat hypothyroid because the carbimazole has reduced the hyperthyroid symptoms. You probably need to go off the carbimazole for a little while and should speak to your doctor. Some doctors will give you levothyroxine in the meantime for the hypo and others will let the thyroid function come back on its own with no hormone intervention, and then put you back on the carbimazole when you go hyper again. Very much an imperfect science to say the least.

Hope you feel better soon. All the best.

[Hugoo in reply to Greekchick]

Thank you. I have been told to go to 5 mg Carbimazole per day. I have asked for another blood test to be authorised in time for my September appointment but again haven’t heard back from Endo Dept.

I am worried about going further into hypothyroid.

[Greekchick in reply to Hugoo]

I can understand why. I’m kind of surprised you haven’t been taken off it for a little while since you do not have Graves - but see how you do on the lower dose. I would certainly bring it up at your next visit.

[LAHs in reply to Hugoo]

I would say try reducing the Carbimazole just a little bit more, you seem to be going in the right direction, just a little bit too much suppressed, you are slipping into the hypo area. I believe Carbimazole has a pretty short half life (less than 12 hours - look it up), take your pill, first thing in the morning then map how you feel throughout the day, As the Carb wears off there should be a point where you feel OK, then match it against the time since you took the Carb. this will give you a very rough idea of how much you are overmedicated.

[LAHs in reply to LAHs]

Oh, and in these early stages, do your own blood tests (in addition to whatever the doc orders - since they will probably be inadequate). Do not get trapped into the insane-making frustration of depending upon medics who have no interest and don't call you back. You need the pills, they can prescribe them, get them but the rest is up to you (sadly).

[LAHs in reply to LAHs]

OK, half life of Carbimazole is about 5 and a half hours. So you should be hypo in the morning and frenzied again by the evening, on your current dose. Check it out accurately.

[Valarian in reply to LAHs]

It really doesn't work like that. Even when I was on 40mg carbimazole/day, it made no difference to how I felt if I took the whole 40mg in one go, or split it into two doses.

[LAHs in reply to Valarian]

Careful and accurate observations always "work like that". You were taking 40 mg in one go and in a split dose. That is the opposite end of the spectrum to that which Hugoo is finessing with her 5mg. You are still struggling with a sledge hammer, Hugoo has made it to a scalpel. If you do not carefully observe, record, and study your results it will take you decades to get well.

[Hugoo in reply to LAHs]

Thank you for your advice, I really appreciate it. Have just got in so will re read all again and take it in. Thank you.

[Valarian in reply to Hugoo]

Your endo will almost certainly want to see new results at your September appointment, and a thyroid clinic is bound to have a process for this (eg I get given a new test form - sometimes more than one - at every appointment, then make an appointment to get the blood drawn at my GP surgery).

They did reduce your carbimazole by half. Your endo will almost certainly be more worried about you ending up hyper again (remember that thumping heart rate ?!) than dipping under, which should easily be resolved by reducing the carbimazole. 5 mg is a low dose, but it does give you some protection if your nodules start over-producing again.

[Hugoo in reply to Valarian]

Thank you for your reply, very useful to me and has made me feel a lot easier about everything. Yes the secretary is sending me out another blood form to have done before Sept 25th.

Thank you

[LAHs in reply to Valarian]

"Your endo will almost certainly want to see new results at your September appointment, and a thyroid clinic is bound to have a process for this":

I wouldn't bet on it! Your Endo. knows practically nothing about this condition (prefers diabetes, it's easier) and the "thyroid clinic" whatever that is, probably doesn't exist.

[Valarian in reply to LAHs]

Well, they obviously want to see new results as they are sending a form out.

[Hugoo in reply to Valarian]

Yes,

They have been very helpful to me today.

The Consultant phoned me at home to tell me about the nodules and explain the options available to me. He said we will talk further in clinic in September.

[Gingernut44 in reply to Hugoo]

Hi Hugo, the lower dose of Carbimazole will probably help and, if so, don't be rushed into RAI treatment or TT until you have all the facts. At least you've joined this forum in time for some advice unlike myself who only found it after RAI and problems with Levo and a GP and Endo who thought that levothyroxine was a magic pill ☹️

[Hugoo in reply to Gingernut44]

Thank you Gingernut44. Absolutely terrified of having RAI. Doesn’t seem right doing this to yourself. Will have to see how bad the situation is in September. Thank you.

[Lalatoot]

I agree ginger nut. I waltzed into RAI having been told by the endo I could not stay on carbimazole forever. I was on 5mg which was all I needed for years. Endo made it sound so easy zap and levo. All would be fixed. 4 years on and I am going through a really bad spell and have never been right.

[Hugoo in reply to Lalatoot]

Very interesting to know this info. Thank you.

[Gingernut44 in reply to Lalatoot]

Hi Lalatoot, Agree. I was told I couldn't stay on carbimazole for more than a year and although I was doing quite well on it was more or less pushed into RAI or TT. I went for RAI without fully understanding the implications, that was March 2018 and I haven't been well ever since. I have been undermedicated for seven months because my Doctor panics when my TSH goes below 2 !! I'm now experimenting with NDT without any great success at the moment but I am determined to get my life back one way or another.

[Hugoo in reply to Gingernut44]

Hi Gingernut44

I will have this decision to make in next few months. It appears from what has been said to me that it is not good to remain on Carbimazole too long and also bad for body if keep going Hyperthyroid. I really want to know what caused this to happen to me.

Will have to research now for next couple of months.

[Gingernut44 in reply to Hugoo]

Research is a good idea - best of luck and keep us all posted

[Greekchick]

🙏🏻🤞