Help Please before my Endo visit on Thursday 23/5 - Thyroid UK

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Help Please before my Endo visit on Thursday 23/5

Gigi75 profile image
6 Replies

I have seen posts that say that perhaps you should not take your thyroid medication before you go to see an Endo so that your blood samples reflect your state of health in general (without Thyroxine) that particular day.

Please can you advise me ...I take my Eltroxin in the evening about 10pm and at the moment I am on 100mcg one day and 75mcg on alternate days ...I have been on 100mcg solidly for nearly 13yrs but had some problems which I will not bother to detail but I saw an Endo for the first time on 14/2 and he decided to try the alternate dose for 8weeks then get my GP to do a blood test which came back as being in the normal range, but I am feeling very tired now and not so good as I was on the 100mcg daily routine, so contacted his secretary and she kindly got me an appointment for Thursday of this week, so since it is for 2pm and as I said I take my medication at 10pm the previous evening, and am up at 6am the next morning..........can anyone advise if it is best to take or not to take my Eltroxin on Wednesday night (before my App on Thursday at 2pm)

Thanks Gigi

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Moggie profile image
Moggie

Yes of course you should take your meds the night before - has the endo every tested anything else like B12, vitD, iron, ferritin etc? If not then ask if you can have these done. Also ask (you might want to take a notepad with you) for him/her to read your two latest TSH blood results out for you and if the first one (the one when you was on 100mcg's and feeling better) is lower than the second one then ask if this is not a good indication that you feel better when your TSH is lower in range (Many on here don't feel any better until the TSH is 1 or under - myself included).

Without you posting your "normal range" results - you should never just take what the doctors say as gospel, their idea of "normal range" and what is an optimum level are two totally different things, I'm afraid this wont be much of an answer. Have you actually got your results that you can post - if not then you really do need to start asking, and keeping, ALL your blood results so that you can monitor and control your condition (you'll probably make a much better job of it than your endo)

If he/she does do bloods then ask for a FT3 and FT4 test (these will show if your body is converting the Eltroxin (T4) you are taking into the active T3 that it needs. If your endo refuses to do these tests then ask WHY - this is the most important question you can ask when dealing with the medical profession. If I don't understand something I ask WHY, if I don't understand their reply I ask them to explain it again.

Not taking your meds the night before wont make a difference with your blood results as the body stores Eltroxin (T4) until it needs it so you will already have lots in storage and this is what will determine the TSH range.

Hope this helps.

Moggie x

Gigi75 profile image
Gigi75 in reply toMoggie

HI Moggie, thank you for your prompt reply,

I had never been given access to my results until the end of last year and only then because I started to look on this site and learned a lot about what I should be able to find out about my thyroid problem so when I began to get various symptoms and was feeling frustrated by the answers I got from my GP mainly, why do you think it might be related to your Thyroid problem? or I don't know what that could be!! etc I then asked to see my results on the computer, and discovered that at the end of last year my annual thyroid test stated on my results *ABNORMAL* which is the way it was written but when questioned my GP pointed out a line further down the page

which said R Thyroid funct test - indicates adequate replacement with thyroxine

TSH-0.05mu/L Range (0.35-5.00 U)

Free T4 + 24.4 pmol/L Range (9-21.0 U )

she said the lab had not indicated any need for change and therefore my results were considered normal and she had to stick by what they say.

so I said that since she could not help me with my problems then I would like to see

an endocrinologist because I was not feeling very well and she did not seem to be able to answer my questions she admitted that she did not have enough knowledge of thyroid problems to be able to help so I got an appointment after 7-8 weeks with The Endo who said that my result seemed to indicate that I might be getting near to changing from hypothyroid to hyperthyroid, so hence the change of dosage from 100mc every day to 100mcg one day and 75mcg on alternate days. I did say at the time that I did not feel any hyperthyroid symptoms what so ever and I still thought I was hypo.

my worst symptoms are all over muscle and joint pain digestive problems.... stomach pain after eating.... not sleeping very well, constipation, tiredness etc

I HAD asked my GP if she would test my VIT D level and she just said WE don't do that, so I asked the Endo to do it and he said OK as a result I am on ADCAL , he also said that the tummy pain might be celiac disease and he tested for it but it was normal, he also tested for infection but it was normal, on the question of T3 testing he gave me some kind of waffle which I did not understand but he was not for doing it, so...... I thought well I wont push it and I'll wait and see the results of what he has done and take it from there, however he said he was not giving me another appointment at that time and we should just wait to see what results the Vitamin D and calcium had and also what the change in dosage of thyroxine produced.

I had my thyroid blood test done after 8 weeks on this regime and I was told the results were normal they were given to me on the 16/4 they were,

TSH 2.44

T415.8

so I was told to stay on this regime, but I have got steadily more tired and the muscle and joint pain is still there and also the tummy pain and constipation remains too (although I do try to take things to relieve the constipation)

so since this is now nearly 14 weeks since I saw the Endo and I still don't feel right that is why I have contacted them again and am now going on Thursday of this week to see if I can get some more help.

sorry for the big long explanation but I thought I should put you in the picture a bit more since you kindly took the time to answer and I will get back to you after I have

been to the hospital again

Regards Gigi75

ThyroidThora profile image
ThyroidThora in reply toGigi75

Hi Gigi75

Thanks for putting all the information on your message. I am going to be visiting an endocrinologist in the near future and wasn't sure what to ask regarding tests. I now know and will be asking for a full spectrum of tests to rule out why I feel so ill. My GP won't do the tests and knowing what an endocrinologist can request is a big help.

Thank you so much.

Gigi75 profile image
Gigi75 in reply toGigi75

Hello again, Moggie, have been to see the Endo and I took a few notes with me like you suggested, and had written all the tests that you thought I might could request I got the opportunity to discuss them with him, he has firstly agreed to put my Eltroxin back to 100mcg every day, instead of alternating it every other day with 75mcg, he also said that although he thinks there is no need for me to have a t3 test because he can tell by my last blood test that I am converting perfectly well, but I said in all my 14 years of being hypo I had never had a test for t3 and I would really appreciate it if he would do it for me ....so he said OK ....I am also to get tested for B12 Iron and folates I think........ he has also ordered something he called a needle test which I'm not sure what that is....something about having a needle inserted in my arm and a sample taken the he said something like we will then bump up your hormone level and test you again??? ( have YOU any ideas what that could be moggie?) anyway I am to go for all these tests on 4th June and have to fast from the night before, he will test my thyroid function after all this and he said all this might help to find out why I am so tired and maybe what is causing me pain in all my muscles and joints, so I can only say I think he was very helpful and ready to listen to what I had to say and grant my requests without any problems, seems I have been one of the lucky ones so far.

will let you know how I get on after my tests

Thanks again for your help

Regards

Gigi75

Moggie profile image
Moggie

Without a FT3 test your endo cannot see if you have a conversion problem and I would be telling him this. Your FT4 was to high and could also be indicating a conversion problem. Yes your TSH was low but that is the amount of thyroid hormone in the blood, not in the cells so although your TSH was low it does not necessarily mean that you are overmedicated. Really push for a FT3 test and try to get as much evidence as you can that this is what is needed. Low B12, VitD or iron can cause conversion problems which should backup your request. Ask him how/why he is so sure you are converting T4 to T3 without a test (in other words really put him on the spot - and don't give up until you have an answer you can understand and are happy with)

Your levels are going the wrong way and they need to sort this out before you end up really ill and unable to do anything. Your endo will like the new blood results but you need to stress to him that you feel really ill and don't like them.

I'll have a look around for something that might help you but I cant do it today as my boss is on the war path (he keeps catching me on the site - whoops) but will see if I can sort something tomorrow.

Moggie x

Moggie profile image
Moggie

Have a look at this question - it is very similar to yours, not the persons symptoms but his T4 results and then answers he is getting are similar to what I suggested - you need a T3 test.

thyroiduk.healthunlocked.co...

Have a read and see if you can gain any ideas as to what to ask your endo for - will still look for positive proof for you but as Rod says in one of his answers, that might be a tall order, but I will try.

Moggie x

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