I have finally got my blood test results from 8th March. I am a 71 year old woman with well over 10 years of diagnosed underactive thyroid. My Doctor has been reducing my Levothyroxine from 200mg to 150mg even though I have told her I am still showing a lot of symptoms ( very cold, constipation, weight gain, dry skin etc). She has now booked me for another test in June. My results are as follows:
Glomerular filtration rate - 81 ml/min/1.73m*2 Estimated GFR 60-89.
All gobbledegook to me, but I would be grateful for your assessment and any advise you can give me, before my next appointment. Should I be looking at self medicating and if so, how do I go about it. Many thanks. Dot
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PottyDotty
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Oh dear. Another ignorant doctor! Your FT3 is much too low. You're not converting very well, so that is what is causing your symptoms. Fine to reduce the levo, but she should be adding some T3 in to replace it.
Your ferritin, B12 and folate are good, so that's not the cause. Are you eating enough? I know it can be difficult at our age, but it is important to get enough calories.
It's possible that you do have Hashi's, because your antibodies are quite high in range. Is this the first antibody test you've had? Might also be a good idea to get your vit D tested, too.
As your doctor doesn't know much about thyroid, it really would be a good idea to self-treat. But, I think you'd have to learn a bit more about it, before attempting that.
Thank you so much for your advice. Not sure if I have had antibodies checked before as virtually had to make a list if all things to check before the blood test. To make matters worse, I fainted after the blood test and it took 3 hours of lying on the floor feeling awful before I was well enough to get up and go home. Now worrying about the next test in June in case the same thing happens again.
Hi PottyDotty, What GG said: oh dear. Another ignorant doctor! and...which T4 test is that? Is that Free T4 or Total T4? It it's Free T4, it's the correct test. If it's Total T4, it's not the correct test because it's a combo of two types of T4: free/available and not free/bound levels.
Also, what is "Thyroid Autoantibody Level"? There are two Hashimoto's antibodies. They are not lumped together, but are two separate tests: TPOab and TGab.
For the fainting, have you had a full blood work done: Complete Blood Count and a Comprehensive Metabolic Panel, plus fasting glucose to see if you have a blood sugar problem, as well has having your heart evaluated and exercise stress test?
Do you know if you have vasolvagal syncope? It can be a common cause of fainting. It's when a cranial nerve called the valgus nerve is activated and overstimulates your parasympathetic nervous system. This causes a reduction in heart rate and a decrease in blood pressure, resulting in fainting.
Hi ShootingStars. Many thanks for your info. The actual words on the report state Serum free T4 , so presume that is correct. As for the autoantibody level it does have XE257 in brackets, does that make sense to you? As for the fainting, vasolvagal was mentioned as the probable cause, but they don’t know why I take so long to recover. The first time it happened I was ambulanced to hospital as my bp plummeted and took a very long time to return to normal. This time I just layer on the floor of the treatment room in the surgery as every time I tried to sit up, I was sick! Any hints on how to avoid this happening again in June? GG has already advised on plenty of hydration. Many thanks for your help and support.
I believe that is a code in those brackets. Somewhere there should be a key as to what that code refers to. Might have to call the lab or doctor to crack the code. Either way, you need separate tests for TPOab and TGab. One or the other can not be omitted and they cannot be lumped into one test.
That’s scary and sounds very dangerous. Now that you’ve shared more details, this really is very concerning. 3 hours on the floor, and unable to sit up without vomiting is a long time! I can’t believe those doctors weren’t more concerned and didn’t get to the bottom of this.
You absolutely need a complete and very thorough cardio vascular work up. Without knowing the cause of your very serious symptoms, there are no suggestions anyone can make to prevent you from fainting, or worse. Please do not wait any longer to see a doctor and make sure you push to get to the bottom of this. If they try to blow you off or assume a diagnosis without complete diagnostics, quickly go see a different doctor.
Thank you so much. At least I will be able to go back well armed if the Dr doesn’t listen to my concerns. I will let you all know how things go in June. Thanks once again.
Passing out due to low blood pressure is a hypothyroid symptom! I would point that out to your ignorant doctor and take a copy of the statement from Dr Toft (TSH > 1 and even suppressed, free T4 and free T3 in the upper 1/3 of range & if free T3 is not over range you are not over medicated) It would be a useful education for your doctor. Ask admin here for a copy to take with you.
Refuse to entertain any reductions and tell her straight you have been well for 20 years before (I hope I got this right or however many years you felt ok on 200mcg) she meddled in your medication and she is making you ill and you want what you had before this interference when you were in perfect health. Mention nhs choices recommends support from thyroid uk where the advice has been that in your case no dose reduction was needed because you were not overmedicated according to your results, but now you are under medicated and need an increase.
They just think TSH and ignore everything else including the other more diagnostic blood tests - as if we are a bunch of numbers not living breathing beings with symptoms that should be taken into account. Fancy messing about when you were fine what stupidity is that? That levothyroxine costs next to nothing.
If she is still obstructive I’d recommend self medicating on NDT, she doesn’t have to live your life, you do. Pity we cannot turn the tables and inflict the symptoms on them - it would be the best lesson they ever learned.
You could try another GP but they seem to have all been brainwashed into only considering TSH which is useful for demonstrating overt hypothyroidism but is an unmitigated disaster for trying to fine tune a dose.
I took the law into my own hands and take NDT - it is amazing how easy it is to get the dose right on symptoms alone. I feel loads better too.
If you felt ok on Levo you should bully her back and try and get your dose reinstated for an easy solution to what ought to have been a non existent problem - all of her making.
Thank you so much for your response. The strange thing is that I am not usually squeamish and the fainting seems to occur a few seconds after the blood has been drawn. I have printed off Dr Tofts report and will take that along. I will try insisting that she does increase my dosage from 150 to at least 175 again but if I have no luck, I will have to self medicate. I will let you know what happens in June.
Perhaps the further reduction in blood volume triggers it? I fainted riding my bike on a club run the person behind rode over me which caused some nasty injuries. I just keeled over, no arms out to save myself or anything. I remember I had felt fine, but had not wanted to go on the ride when I woke up which was odd, I was chatting to someone when I started to feel all queer it was like a jigsaw puzzle falling into pieces and then I hit the deck but don’t recall any of it. Was an ambulance job. I had a huge hematoma at the top of my leg, bad concussion (cycle helmet was destroyed so reduced damage to side of my head) and could not walk for a couple of days. I passed out again trying to leave the hospital I told them I could not manage crutches I couldn’t even lift my left leg up lying on the trolly but they insisted - I was with my partner I saw a chair not too far away and set off felt all whoozy and said to him “get me on that chair fast!” the vision started to go like a circle with a black edge i though dear me this is the end! He though I was going to die too. My blood pressure was very low but once I came round they simply bundled me into a wheel chair and got him to push me out. He had to lift me into the car and carry me upstairs to bed. It was not a lot of laughs. I also got dizziness on standing up especially from squatting or kneeling a lot. It is not at all pleasant.
You really don’t want the danger of collapsing (my mother had this symptom too she was hypothyroid but not diagnosed - she went into denial - she smashed her face in falling straight forwards and had to get several false teeth she also
managed to dislocate her elbow in another fall) for want of 50mcg Levothyroxine you should tell the GP she is endangering your life. Look at me on that ride I could have passed out into oncoming traffic, been mangled where no helmet would help and not lived to tell the tale. There are broken hips due to falls to bear in mind and my father ended up with a brain hemmorhage because of collapsing and hitting his head on the side of the bath.
I hope she reads the Toft advice and sees sense. There are two articles the more recent one and the one for pulse magazine a while back. Apparently he is the Queens physician when she is in Scotland so very well regarded. What’s good enough for the queen is good enough for you!! Good luck with it ☘️🍀☘️
Wow, you certainly had a bad time of it and really puts my little episode into perspective. I will certainly speak to the Dr about all this and hope to make her understand. I belong to a large practise so could ask for a different Dr, but doubt ant of the others would be any more clued up or sympathetic! Thank you once again.
It is all very tough I actually felt my worst when I got closer and closer to optimisation. When I was really ill I just fought to get through each second and had no energy for things like reflection I simply invented bizarre explanations for my symptoms which came on so gradually I thought they were normal. I used to think people were following me I even thought they changed their clothes to fool me - they were just different people doing nothing more than living their lives - how darn crazy is that!? I had an idea it was a silly notion but part of me must have believed it and had to rationalise it in odd ways like that. As I got better I became more aware of my deficiencies due to the illness and that became quite embarrassing to me and I was more aware of how ill I remained. Perhaps the closer to health the harder it is. I actually managed to keep working full time - no idea how I kept going. The levothyroxine phase was the worst for work I had to give up in my chosen specialist area and retrain in something completely different but it worked out ok. I consider myself a very lucky person. It has also given me huge insight into this disorder on a personal level. I wish I had kept a diary of it all but I found writing very difficult same with reading. I might have been able to write a book about it. I used to think good lord we are nothing more than a bunch of hormones. They determine everything about our function. We skate on thin ice and rarely know it for sure.
Hi, As well as hydrating yourself well a day before your blood draw the following might also help: Avoid wearing warm clothing (stay on the cool side), avoid wearing constrictive clothing. Tell who ever draws your blood your history with blood draws. Ask for a very experienced phlebotomist. Recline as much as you can during the draw. Ask to have your blood drawn in their recovery bed if their drawing chairs do not recline. Do not attempt to sit up partly afterward for a good 15 minutes or longer afterward (keeping feet elevated). If you tolerate sitting up a little, drink cool water as much as you can. If you don't feel well with your head elevated stay down & use a ice pack on your forehead & upper chest. Do not let staff hurry you up, stay down another half a hour or longer if necessary until you can prop your head up & drink cool water. Sit up very slowly in stages, then "dangle" with your feet down on the side of the bed for some time continuing to drink cool water. Take your time. If staff need the space, tough!
Thank you Clarissa. Luckily I do have a very good phlebotomist who knows me very well. I have already approached her to let her know about the next blood test and she is putting things in place for me. Usually they sit me in a straight backed chair, which is why I ended up on the floor last month. She is going to lay me on the bed next time and ensure a Dr is available in case of more problems. I will take your recommendations on board and hopefully won’t have any more such issues. Embarrassing if nothing else!
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