I have been emailing my endo and he is going to ring me today. Please can someone advise me as to what they think Below are my results after and before starting T3. When I first started it I felt absolutely fantastic. However, now I am very up and down.
Results after 6 weeks on T3 (did not take any T3 that morning - 21 May at 9.30am) are as follows:
TSH 0.01 ( 0.35 - 5.50 mU/L)
T4 13.2 (10.50 - 20.00 pmoml/L)
T3 4.80 (3.50 - 6.50 pmol/L)
This is on 20 mcg a day T3 (3 times a day) and 100 mcg T4
Results last time before starting T3 were:
TSH 0.13
T4 20.10
T3 4.60
I felt quite well again when I increased the dose of T3 to 20mcg a day and decreased the T4 to 100mcg a day, but then after a few days (about 10) I started to feel very tired and washed out again, no energy and lost my confidence. I seem to be very up and down with how I feel and symptoms.
My doctor asked to see me the other day and as I was waiting to hear from the endo and felt unwell, she increased my T3 to 30mcg a day with the T4 staying at 100mcg a day. I have not told the endo this as I don't think he would like it. I have been on 30mcg for approx. a week but still do not feel any better.
I had an email from my endo who said "Your thyroid hormone levels themselves are okay and your TSH is below normal so in fact you are taking a wee bit too much of one or other of them. Probably the T3. These symptoms are most likely not due to your thyroid therefore."
Please, please can someone tell me what they think, as I am more confused than ever now and I need to know what to say when he rings me!
Best wishes
Kathy
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Katkin1
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...the general feeling amongst many of us is that your Endo maybe mistaken - as you are only over medicated when the TSH is suppressed and the FT3 is over the range - and yours is not. As you will read in many of the Blogs - the TSH is a poor guideline once you are on medication - especially T3 as the information looping back to the Pituitary Gland will be more positive and so it will not secrete so much TSH. Simple really but obviously difficult for your Endo.....x
Thanks for the quick reply Marz. So (forgive my muddled brain - still) would the T3 need to be over 6.5 for me to be over medicated? Does the T3 lower the TSH? What about the T4 reading please - where should that be?
Got to say that I heard the exact same words from my endo not so long ago and I thought "here we go - more excuses" but he has been proven right. My symptoms were not all down to my thyroid condition. Low iron had a lot to do with my tiredness as did low VitD (which I had only supplemented with high dosage 50,000iu vitD months previous) and a high parathyroid level is causing concern.
It is very very easy for thyroid sufferers to put everything down to this illness and stop looking elsewhere for answers so my advise to you is if your endo is saying he doesn't think its thyroid related make sure he finds out what is causing your symptoms by doing as many tests as he can to find the cause. My endo did so many blood test I thought I might need a transfusion for the blood lose.lol. and he also sent me for adrenal tests, heart scans, bone scans and every other test he could think of and he isn't finished yet. Don't let him fob you off, discharge you and send you back to your GP ask him, firstly, has he any suggestions as to what is the problem and, secondly, if he says no then ask him what he intends to do to find it. Remain polite and open minded and you might be surprised with the outcome.
Thanks Moggie. I have been taking 50,000 iu - one a day for 6 days and now on 1 a month for 6 months. This did help, intitially. You are right that I need him to find out what the problem is. The trouble is that he is very expensive. Should I try and continue with him and find the money from somewhere, or should I ask to be referred to an NHS endo now? I'm really not sure what to do. Below are the results of the other tests I had in December:
Thyroid peroxidase level 195 IU/ml <60
Receptor antibody level 0.42U/L <0.4
Revised method in use from 26/4/11. Normal range 0-0.4 u/L. TSHR antibody – borderline positive
Serum vitamin D 29.7Nmol/L
New vitamin D method and reference interval from 11/11/10. Total 25 – OH vitamin D reference intervals: <30 nmol/L – vitamin D deficiency
30 – 79 nmol/L vitamin D insufficiency, consider replacement
I'm not to hot on blood results myself but even I can see that you have a couple out of range that need explaining. Your white blood count is high (I think this indicates infection but don't quote me on that) as is your Neutrophil count so I would be asking the endo to explain these to me, don't forget you have paid for his services so make him earn it. I would also be asking him to write to my GP with a view of being referred to an NHS endo and/or any other specialist he thinks is necessary depending on what he thinks is the problem.
Thanks Moggie. He didn't say. He just emailed me with his mobile no and told me to leave my number and he would ring me. I'm still waiting at the mo. Could be any time! I will ask him to explain the blood tests. Now you have mentioned it, I see that Basophil and Eosinophil are also high. I will ask about these also.
Hi Moggie. Just thought I'd let you know that the Prof. (my endo) rang me at 9.55pm last night - I was fast asleep. He did apologise though, but when I asked him about my white blood count etc. he couldn't answer me because he was in London and didn't have my file. Anyway, he has suggested 25mcg of T3 a day in three doses, 10, 10 and 5, and leaving the T4 at 100 mcg. Not sure if this will make much of a difference.
So is he going to answer you anytime soon - is he going to write a letter to explain what your wonky blood results mean, is he going to write to your GP with the suggestion that you are referred to an NHS endo. I know it was very bad timing that he phoned so late and you had to deal with being woken up but it seems to me that you have gotten no further - why does he think that your symptoms are not all thyroid related and what does he think could possible be the problem.
If I were you I would try and speak to his secretary today and explain how confused you are and how you have not had your questions answered satisfactorily. If you don't feel like doing this then you will need to write a letter stating the same.
I would take him more seriously when he says that your symptoms are due to 'something else', IF the actual thyroid hormones (never ming the TSH) were optimal. Which they surely aren't. They are far too low. My response would be: give me enough thyroid hormone replacement to bring my FT4 and FT3 up to the top of the range, THEN if I still have symptoms we can envisage 'something else'.
All he's doing is looking at your TSH - a pituitary hormone which at this point is totally irrelevant - and ignoring the thyoid hormones which are the best indicator to your state of health.
Forgot to say: there may well be 'something else' at the same time BUT the thyroid situation is far from settled so that is bound to be giving you some symptoms, if not all.
The problem with the "something else" diagnosis is that they usually don't mean it. If they did, they would look for "something else" with the serious intention of finding it - VitD, B12, iron, infection, inflammatory illness, etc, etc.
What he wants to do is fob you off with a fake diagnosis of ME/CFS which just means he can't be bothered to raise your T3 level to optimal.
Oh, that is so true! How do they get away with being so lazy?!? We wouldn't accept that sort of attitude from a car mechanic or a plumber.
When I used to get the old 'something else' routine, I would respond with 'what else?' and when I got the usual laconic, disinterested shrug of the shoulders accompagnied with a drawled 'how should i know!' I would come back with "Well bloody-well find out then!!!" At which point I would either be shown the door or given a rise in levo! They just can't be bothered and don't give two hoots about our welfare. It's just unbelievable.
Hi Grey. Thanks for your reply. On what basis do you think I can ask him to put my medication up further to get my readings to the top of the range. I bet he's going to say that TSH is very low so meds are OK. DO you know what T4 and T3 readings are good to feel well please?
Most people need them up the top of the range to feel well - sometimes even over the top.
The only thing you can do is find a way to explain that TSH is not reliable, bears no relation to the level of the frees, or the symptoms the patient is feeling. He should not be dosing by the TSH. But they all do it, I'm afraid. They are so ignorant. The fact that the TSH is low in no way, shape or form means that the meds are ok. It's the level of the FT3 that tells you that. And even the FT3 isn't 100% reliable. Symptoms should be taken into consideration. I really don't know how you get that through their thick heads. I despare sometimes. It isn't even logical.
There is a book you can buy in pharamcies by a Dr Toft where he explains all that. But don't let him read the whole book! lol There are things in there I disagree with and that disadvantage thyroid patients. I think it's called 'Understanding Thyroid Disease' or something like that (although he obviously doesn't!) and it explains why some people need their TSH suppressed and how it isn't going to do them any harm.
Thanks Grey, I really appreciate all the helpful information. I have the Dr Toft book somewhere, I will find it and refer to it. It's all just so frustrating isn't it? I will see what he has to say when he rings (he hasn't yet) and let you know what he says.
Agree with Grey wholeheartedly. Definately do not read the rest of the book beyond the mechanics of addressing your concern. If you do, treat it with extreme caution. If you agree with most of the advice on this site from patient (very patient) experts you will be totally at variance with the endocrinologist view and the book should contain a health warning for completeness.TSH and blood tests rule and symptoms are non specific and apply to most people if you were to ask them it seems.
Just thought I'd let you know that the Prof. (my endo) rang me at 9.55pm last night - I was fast asleep. He did apologise though, but when I asked him about my white blood count etc. he couldn't answer me because he was in London and didn't have my file. Anyway, he has suggested 25mcg of T3 a day in three doses, 10, 10 and 5, and leaving the T4 at 100 mcg. Not sure if this will make much of a difference.
That actually makes a reduction, doesn't it? You were taking 30 mcg T3. Well, you'll just have to try working on him with the Toft book next time you see him. He really doesn't sound very clued up for an endo. Your doctor sounds a better bet. What does she say about it?
I haven't spoken to the doctor yet greygoose. But she was very keen that I speak to the endo about the dose, even though she had upped it. She doesn't want to take responsibility for me taking T3 as she has never prescribed it to anyone before.
I don't think the endo is very clued up. I get that impression also, but I really don't know what to do now. If I don't follow his instructions (the endo) then I probably won't get T3 on the NHS any longer.
What makes you say that please? I'm really not sure what to do. I have to have a blood test again in 6 weeks and it will show if I increase my dose further. The endo I see is private and is supposed to know about thyroid but I am having my doubts. I live in Oxfordshire and have not been able to find an endo in or around this area that has a proper understanding of thyroid. I have also seen 3 different doctors in the surgery in my area and they are all singing from the same hymn sheet. My doctor is the best of the bunch and at least had heard of T3 and has prescribed it on the NHS.
I really don't know which way to turn.
My brother-in-law is a doctor and he even says the same as my doctor. They are all so clueless.
What makes me say what? Sorry. lol I was just asking but you say you don't know what to do. Hmm. But you're totally correct, none of them know anything about thyroid (I don't envy you having a doctor as a b-i-l!). So what people do when they reach this point - if they can afford it - is to go private.
Private doctors aren't all great but there are quite a few who have a better understanding of all this and know how to treat it. This is probably because they take an interest in the subject - unlike the majority of endos - and sometimes they even have it themselves.
But what it comes down to is that your T3 is too low because you're not converting correctly. That could be due to fatigued adrenals. I see they haven't tested those, but probably wouldn't know how to treat it if they did find it. And that's where you would possibly do better with a private endo. It's what I had to resort to in the end.
Hi greygoose. Sorry - I meant what makes you say was I just going to do what the endo says. - It hadn't crossed my mind not to. I can see where you are coming from though.
The endo I am seeing is private - that's the problem. I can't find anyone around here who knows about treating thyroid, so I feel a bit stuck (well a lot stuck really). I did have my cortisol done at the doctors and that was fine.
Are you able to give me any idea what my T3 and T4 readings should be (in your opinion) in order for me to feel better?
They more than likely need to be up the top of the range, that's where most people feel best. Or even slightly over.
But you know you are not obliged to do as your endo - or your doctor tells you. They are not there to give you orders, they are there to discuss your health with you and find the best solution together. You can say no. I'm not happy with that. Tell them what you want and insist on it.
It really should cross your mind to question and discuss and put your point of view. Too many doctors get away with being dictators, not enough people stand up to them. That's why they think they're gods and why they think they have the right to ruin peoples' lives when they should be helping them to get well.
It's time we all put them in their place! I've done my bit, now it's up to you. lol
Thanks so much for your support Grey. I have taken that on board and will plan my next move! I think I might just continue with 30mcg and see what happens at the next blood test! I think they are all scared because my TSH is so low.
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