I visited the doctor this afternoon who confessed he wasn't up to speed with my results (I had not seen him before but had put Thyroid on the booking screen). However he thought I was on too much thyroxin because of my test results (despite my tiredness/exhaustion/fibromyalgia)! He thinks that if we can get the test results right we can then treat the other symptoms separately! Also that low vitamins had no bearing on my hypothroidism. Where have we heard all that before?
On the plus side, he has said that I am to have my bloods checked again (tomorrow) and see him again. I will make sure I don't take any medication beforehand this time. He said he could then speak to a specialist to see what he thinks. I don't hold out much hope as it was the specialist that originally told the other doctor that I did not need T3 because my blood tests said so.
Frustrating is not the word!!!
As I had just taken my medication two hours before tests last time (didn't realise the doctor was going to take bloods) can anyone tell me what affect this might have had on my results?
How do we get through to these doctors without it sounding as if we are trying to tell them their job - I don't want to do that. Any suggestions anyone please?
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Katkin1
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Two hours is about perfect to maximise the FT4 result!
It will probably have had little effect on TSH.
The maximal impact of a dose of levothyroxine on FT3 has been reported to be around 48 hours after the dose. Difficult to be sure.
I try always to have blood drawn as early as possible (aiming for 08:00) as that is usually when TSH will be at the highest - of phlebotomy opening hours! And I defer my bed-time dose until after the blood draw. The link below is to a blog about how these things vary over time:
Thanks Rod, that's very interesting and thanks for the link. I have an appointment for bloods tomorrow morning at 9.15am and I take my Eltroxin at 7.30am ish. Does this appointment time seem OK to you (I had planned not to take my medication until after the tests) tomorrow although I had my thyroxin this morning, or should I make it an earlier appointment another day?
But what I found was that if I am not there at 08:00, all the people with fasting, or Warfarin, or other "must be early" tests leave me at the back of the queue.
Hi Regarding the results, the FT3 is on the low side, maybe it would be good to have the T4 ( thyroxine reduced a little and have T3 on a script with it.It does lower the TSH but wonderful for weight and a lot of symptoms. I have to have my FT3 just under the top of range, lots of people do to feel well. To state the obvious, I am sure you know to never take thyroid treatment before a blood test, AM but afterwards. Also if on Beta Blockers the same, they all give false results.If not happy with the GP `s treatment ,do ask to see an endo, of your choice after careful research.
Thank you Jackie. When I saw the doctor yesterday it was just like I was re-living a lot of the posts on here. The doctor seemed to be saying to me that my tyroid was nothing to do with all my other symptoms and once the thyroid reading was correct ie get the T4 down, he would treat the other symptoms separately, ie tiredness, fibromyalgia, and he even said depression. I told him I was not depressed. I told him I thought all these symptoms were linked and he didn't answer me.
Any ideas on how I can speak to him next week when I have my results, without seeming that I am telling him his job? I found I did not say a lot of the things I wanted to say because it was starting to sound like a debate and I could tell he didn't like it.
Hi First of all, I know from many years experience that you often have to fight for what you believe about your health. Do not quote WEB sites, they hate that. Do take a list of all your symptoms.( using TUk site as a guide ) Did he test the Free T3? you can pay through the WEB site, it might make a big difference. However, my GP was told that I needed to see an endo in 1982, never told me. I n 1999, after being so ill for years with my thyroid, I eventually was referred to a neurologist, instead of endo and cardio and in mental hospital for 6 months. Then I managed to see some one without a referral. We both had weekly, horrible letters for the GP. I could go on, but you get the picture.You have to be very strong. If he is bullying you , say so, they hate that! Also you could say, quite truthfully that you would like to see an endo anyway for a second opinion and tell him if it proves the GP right , well then you will understand! My present consultants all say that I know best and defer to my judgement. You must trust yourself to be right and make sure you get help.
I hope that gives you some ideas, I do think the Free T3 is the key, it used to be always tested and treated.
I have just been this morning and had bloods done again for TSH, FT4 and FT3 (I took no medication and fasted). Will let you know the results when I get them.
However, because my TSH is 0.13 the doctor wants to reduce my Eltroxin from 150mg to 125mg. The nurse has just told me that this is because thyroxin can cause osteoporosis.
Hi Well that Ft3 would be too low for me. However, a lot of GP`s go strictly by their rules, they are all frightened of being reported, well terrified actually! i find a good consultant ( any type ) is much braver and treats the patient ,along with considerations of blood results. Good luck, let me know how you get on.
Have you had vit D, B12 and ferritin done? Do you take supplements of any kind? To me when I look at your results it seems that you are not converting the T4 efficiently enough and I would be aiming at trying to do things to help that. I take selenium for conversion (and other things) and some people I believe take zinc for the same thing. I also take a range of other supplements which I can feel the difference when I take them. I was never a huge believer in taking vitamins as I have a very good, balanced diet, but since this thyroid condition and my husband taking lots of anti oxidants on advice of his wonderful consultant and enabling us to have a child (God bless that man) my opinion has changed drastically.
Poppy, Yes you are right about other tests, all the relevant ones would also be very useful, especially vit D as hormonal. Diabetese too is auto immune and a good blood test hormonal.Zinc is one of the few minerals that is completely safe and a lot of people deficient.It only comes to light in a very specific urine test. My daughter, years ago, did a lot of work on it for her masters degree.I am so pleased every thing worked out well for you and husband.
We didn't use zinc (other than a multivitamin), we used high levels of vit C (over the course of the day), selenium and I think vit E. We went from unable to conceive to the lovely consultant telling us that I better watch out and sure enough I conceived on my next cycle. I did miscarry twice before being blessed with our little girl but it was all down to the vitamins that we could.
Hello Jackie and Poppy. Thanks so much for your comments. I have had the other tests done. They are:
Serum ferritin 38.40 microg/L
Serum Iron 13.40 units
Serum vitamin B12 321ng/L
Transferrin saturation index 25%
Plasma albumin level 45 g/l
Plasma alk phosphatise level 174 iu/L
Glucose level 5.40 mmol/L
Magnesium 0.81 mmol/L
Plasma C reactive protein 7.50 mg/L
Vitamin D 29.7 (30 - 79)
Cortisol (only taken once at 9.am (fasting) 248 nmol/L
Thyroid peroxidase anitibodies 195IU/ml
TSH receptor antibod level 0.42 U/L
TSHR antibody - borderline positive
so I am taking vitamin D, B12 and iron, Only just started B12 and iron this week but been on vitamin D for two months. Is there anything else I should be taking please?
Do you think it would be best to wait to give these a chance to work before seeing the doctor again and/or should I ask to see an endocrinologist (which I have not done yet)?
You need to click underneath the person who responds to you or there are no notifications sent and it is hit or miss if someone sees it to respond.
How much vitamin D are you taking? and the same for iron. Looking at the results which really need ranges with them I can see that you are low iron and low vit D and that your B12 could do with being much higher. What comment came with the cortisol test? To be honest they will do very little with it anyway. I don't know enough about any other result to comment.
Have you felt any improvements or anything getting worse? Have you had a time when you have felt better? How long have you been diagnosed and on this dose?
I;m taking 4000 iu vit D a day since 19 December, 20mg iron (just started), B12 1000 sublingual. The comment with cortisol was 'tell patient normal' but I cannot see cortisol listed on my printout.
I have been on 150mg for 5 years.
I do get odd flashes of feeling almost normal. On Monday I felt nearly normal all day, but then went downhill again - loww mood, exhaustion, fibromyalgia.
Hi Just had your comment via Poppy, Glucose would be high with my ranges, diabetes, also in that case you need Hb1Ac test for diabetes as a better test. Hormonal and auto immune , so quite possible without symptoms yet.Regarding vit D ,it takes 3 months to really show in your blood. You need a calcium test first, as calcium ( corrected ) must always be in range. Then increase D 3 monthly after retests, until OK. This is really endo although GP should advise etc.Magnesium Ok as a tiny range, that is in range.Most endo`s etc say treat the thyroid correctly first and then if cortisol still low treat if needed. Cortisone is quite dangerous, eg I cannot even have local injections of it ( heart) If you do not feel right still, I would certainly say to GP and ask for a referral. However, first find out who you want to see, like everything good and bad. A thyroid doctor not , in my experience, a good idea and endo and has such a wide remit and knowledge. Privately anyone anywhere. NHS, look on hospital lists and local private hospitals to cross reference and then look on WEB for individual names. Then if possible ask friends etc or on the site. Names cannot be mentioned except on a PM. Do not rely on GP`s choice, can be a big mistake, experience!
I;m taking 4000 iu vit D a day since 19 December, 20mg iron (just started), B12 1000 sublingual. The comment with cortisol was 'tell patient normal' but I cannot see cortisol listed on my printout.
I have been on 150mg for 5 years.
I do get odd flashes of feeling almost normal. On Monday I felt nearly normal all day, but then went downhill again - loww mood, exhaustion, fibromyalgia.
Not been tested for diabetes, am positive for autoimmune.
Thanks for the information re endos. I think this may be my next step.
Results back from Thursday. Explanation below re visit to doctor. I can't believe it! He only tested for TSH which is 0.21 (0.35-5.5), I just don't know where to go from here. Aparently it said on the results 'tell patient normal'. What does anyone think. Do I go back and see this doctor again, go and see another doctor, ask to be referred to an endo or just give up and try to medicate myself? Any thoughts would be appreciated.
Vitamin D 29.70 ( <30) for which I am taking 4000 iu a day
I was told copper and zinc were normal but I cannot see them on the list of tests unless they are called something else?
The reason I went back to the doctors is because I still suffer with extreme tiredness and lethargy, and aching all over including the soles of my feet (fibromyalgia I guess). I thought if I saw the head of practise I would get somewhere. He did not seem any more clued up than anyone else I've seen and was really rather 'off' with me, but said he would do the blood tests again. However. he did keep insisting that I was on too much thyroxin (150mg) and this should be reduced. He also said that vitamin and mineral deficiency had nothing to do with thyroid! I checked with the nurse that she was taking FT3, FT4 and TSH and she wasn't sure to start with but then said 'yes'. She told me that she was hypothyroid and was on 100mg and has asked for an increase as she didn't feel well, and a doctor had told her she couldn't have any more because of the risk of osteoporosis.
I had asked this doctor if it could be that my T4 was not converting to T3 hence my test results and he didn't answer me. He told me that signs of underactive thyroid were tiredness etc and overactive was feeling wound up etc. I said that as I had the symptoms of underactive thyroid should we be decreasing my medication, to which he didn't reply. As he left he said I was complicated but that he would see me when the results came back. However, when I rang the results the receptionist said it says 'tell patient normal'.
When the results came back, only TSH had been done 0.21 (0.35-5.5) this time [early morning before medication ] and 0.13 last time same reference but this was after medication in the morning.
I am concerned that if I go back to the doctor I have just seen he will not be of much help and will just reduce my thyroxin. The lady I saw before was the one that did all of the blood tests for me. But this is as far as I get.
I'm just not sure what to do now. Any thoughts please?
Hi The over riding thing is that you do not feel well, so something is wrong.I have very low TSH , it is unusual, that is one of the many reasons I think you should just say that you want to see an endo, it is obvious that the GP`s are floundering. Low TSH can be Pituitary gland but I know mine is not, an endo would look at that. I am quite sure your T4 needs slightly reducing and some T3 given to you. I think with that TSH it would be a very brave GP who would give it to you. For this reason you need to be very careful which endo you see. Also do not see a private doctor as I think it could be more than simple thyroid, I have Hashmitos,( auto immune)but I cannot relate how you are simply to this. Range for Magnesium is 0.70 to 1.00 , , that seems to be at all Labs try to.have some magnesium rich foods., that is safe and might help a little. Your vit D needs a much higher dose, after having a calcium test. Vit D is a hormone and usually ideally under an endo ,as a hormone. Then script from the GP. I used to have a script for 3 times the recommended dose, from endo and GP , but my calcium suddenly went high ( above range ) so we had to reduce the D and that did not help so we had to stop the D as it was no longer safe. I have severe D insufficiency with Osteomalacia ( adult rickets ). High calcium ,high D ( for you ) and PTH ( parathyroid) high tested together AM then it is PTH and needs investigation. I do not think that applies to you but useful to be aware of it. I also think you should have an ultra sound of your thyroid, GP could arrange that. There is obviously something wrong and it does need finding and treating. You may just have to be forceful with the gP. It is not nice but you must get the proper treatment as you obviously are not right. The other bloods are fine but I am surprised you have not had LFT`s ( liver unction) and U`s and E`s ( kidney function ) done. The Glucose is a must too and if possible the HB1ac. both for diabetes.
I do hope you can sort this out, sometimes it is useless leaving things to doctors, I found this out for myself. Now even best docs, I keep an eye on!
Hi Thanks for your helpful reply. I did have liver function: 'tell patient normal', no result or range printed. I have the long list of tests printed out and some have results and some do not. I have filled in the ones I can by asking the receptonist.
I think you are right. I need to ask to be referred to an endocrinologist, but this brings another problem. As it was through a phone conversation with my doctor that the endo told her I did not need T3 because of the test results, I don't hold out much hope of getting any further by seeing one. I live in Oxfordshire and so far have not managed to find a specialist on the NHS who deals withy thyroid problems. My doctor would not prescribe me with vitamin D and told me to go and buy it and take 1000iu a day, but I inceased this to 4000 iu after advice on this site. I didn't even realise I could have it prescribed as she said that she couldn't prescribe that dose!
Hi I would just tell the GP you are still not happy and want to feel right. As they have referred you, I would think with a bit of pressure they would give you a private referral. They cannot be happy with how you are because they have already done some referrals.
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