Yesterday I had a very bad day. I had a ride in an ambulance again. About 1am I was woken up with terrible pain in my throat and ears. Felt like somebody was sticking knitting pins into my ears the pain was so bad. My heart rate went crazy and I thought I was going to pass out. I was taken to local hospital and I got the usual. On 50mcg thyroxine eh? Who gave you that? We better keep you and do tests! I had 7 lots of blood taken from me. The following morning they sent a consultant and two students to see me. The guy was so full of himself he said now students this lady is suffering from too much thyroxine come and listen to her heart. By this time I was so upset my heart as was at a gallop. He said I will be cutting it back to 25! When he left the room my heart rate returned to 75! A few hours later he sent one of his students for more blood. I refused. She came back 4 hours later. I was so upset the minute she walked in the door my heart rate hit 130. She said my blood tests were all normal and they were recommending a dose reduction to 25mcg. I said no I don't agree with that. I asked to see my test results. Why she said they are normal? I was so angry because they had taken so much blood out of me I had 7 wounds as I'm near impossible to get blood out of. I let them do it because they said they were going to run a lot of tests including full thyroid. They had only a few tests done and only TSH. I hit the roof I was so annoyed I had the guts to tell her the consultant was an idiot and how could he possibly make a diagnosis with TSH alone? My TSH was 2.4 by the way. I told her I needed a raise not a reduction. My heart monitor was flashing red! I asked them to remove it. They told me I had to make an appointment with my GP about my symptoms as they were only interested in proving that I hadn't had a heart attack and by my reaction I needed medication for anxiety. I'm back home now, my blood pressure and heart rate have returned to normal but my opinion is now that hospitals are indeed bad for your health and ignorant consultants are dangerous.
Why are docs so stupid?: Yesterday I had a very... - Thyroid UK
Why are docs so stupid?
2 months ago your results showed you were under medicated and needed dose increase in Levothyroxine
healthunlocked.com/thyroidu...
If your TSH is now 2.4 you definitely need an increase
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised or if under medicated
When were vitamins last tested?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
And FT4 near top of range
See box
Thyroxine replacement in primary hypothyroidism
pathology.leedsth.nhs.uk/pa...
Thank you for confirming that. I have had a blue horizon thyroid 11 done. I also had a GA last week and I think that has probably messed me up a bit thyroid wise.
By results I do need an increase. I have very low antibodies. Only vit d still needs raising a bit and my folate. My CRP was 6 the other night. I do rest very quick TSH wise to an increase that's the scary bit. When I increased from 25 to 50 my TSH dropped to 0.4 and I felt bad heart rate rate increased. Over time my heart rate has gone back to normal and my TSH has crept back to 2.4. this has always been my problem. TSH just sits around 2.5 no matter how low T4 and T3 were? My private doc says he reckons it's my pituitary that's not doing it's job? Any ideas?
Recommend getting DIO2 gene test
thyroiduk.org.uk/tuk/testin...
This is common gene variation
Pituitary is often sluggish in reacting when on Levothyroxine. It's not the same, tipping in synthetic Levothyroxine compared to how our thyroud works naturally.
Very common to get low TSH on low dose Levothyroxine, it's why just testing TSH is completely inadequate
My TSH is virtually zero (0.005) on Levothyroxine plus T3 (on NHS).
Most important tests are FT3 and FT4 plus vitamins. Essential to test as early as possible in morning and fasting and last Levothyroxine dose 24 hours before blood test
I'm a very good converter I just need a supply of T4! It always just sat at 13. The 50mcg have it sitting at 16.7 now which is in right direction. I think I really need to go slow my heart is so reactive. Even a small increase shows in a few days and resting heart rate hits about 100 that's why I get scared I'm very paranoid of a raised heart rate after all my funny turns in past but that was before I was on any thyroid meds.
Hi, I kept having raised heart rates of 150/160 beats and had to go to hospital each time, on one of these visits the Dr. blamed them on too much Thyroxine (I was on 100mcg) even though my readings were fine as was I, but he cut it back to 75mcg which made no difference I still kept having these episodes, I had treatment for the fast heart rate and was told in my case Thyroxine had nothing to do with it and even though my TSH wasn't right neither was I, you know the usual things, moody, hair loss, weight gain, just generally feeling yuk, nobody would listen to me and its took me 2yrs to get somebody to admit that I needed an increase, why won't people listen, after all who knows better that ourselves how we feel, why do we have to fight all the time just to feel well, sorry that's my moaning over, hope you're feeling better 😊x
Fast heart rate can be due to low FT3....perhaps you add poor converter of FT4 to FT3
Heart needs good levels of FT3
Hi thanks for the reply, in this case I was having SVT, (superventricular tachycardia) I had an ablation which took care of that, (if anything my resting heart rate had been between 58 /60) then because the Dr had lowered my dose that's when my thyroid problems started. I'm now up to my previous dose, 100mcg and waiting lots of blood test results, so maybe this time I'll be listened to, who knows 😊
So you need to ensure that TSH, FT3 and FT4 are tested, plus vitamin D, folate, B12 and ferritin
Not just TSH and FT4
Thyroid tests ideally need to be as early as possible in morning and fasting and last dose Levothyroxine 24 hours prior to blood test
Thanks a lot I'll make a note of these, and thanks to coming on here I now feel that when I do go back to the Dr's for another test in 2/3 weeks I know the right sort of questions to ask, thank you so much x
Not surprised your TSH is still high on only 50mcg Levothyroxine.
Guidelines on doseage is 1.6mcg per kilo of your weight
For majority of people that's at least 100mcg Levothyroxine
You may need to step dose up slowly. Initially 50/75mcg alternate days for few weeks before going up to 75mcg daily
Bloods should be retested 6-8 weeks after each dose increase (or brand change of Levothyroxine)
Always take Levo on empty stomach and then nothing apart from water for at least an hour after.
Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
verywell.com/should-i-take-...
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.
Always a bad sign when you see a consultant arrive with a bunch of students. He puffs out his chest and will do anything to impress them - even if it's entirely the wrong thing - much to the detriment of the patient. I know students have to learn on real patients, but they are learning the wrong thing with these testosterone-ridden consultants - what's he a consultant in, anyway? Is he qualified to treat hypothyroidism? Obviously not. 
I laughed because when I told her he was an idiot she said oh but he's a consultant. I said in what! She said respiratory diseases but he dables in everything! My husband burst out laughing. She said if you are not satisfied with our medical advice see an endocrinologist. My husband laughed and said " but she doesn't have diabetes!"🤣🤣
I’m so sorry. I’ve learned to stay away from them as much as possible, but sometimes you need medical advice in case it’s something else, surely that’s not too much to ask !
On a lighter note, I read your post with interest - I thought at first you were going to tell us that you’d found three doctors who agreed with each other 
It’s as if we live in a twilight world and don’t really exist. x
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