Hi, I am 46 and have been on thyroxine for a year and a half now as I had a reading of 79 and went into a bit of a coma one weekend, ooops!!
the doctors gave me the tablets and told me that would work and make me feel better as thousands of people have thyroid problems and Levo sorts it out completely (in other words go away and don't make a fuss) hair was falling out, I put on 2 stone in a month, scaly skin, oedema, voice so deep I sounded like a man, could not string two words together without having to think about it or sounding like I was drunk etc etc
I am currently on 125mg a day, I have been having regular blood tests at my GP's and only after having them for a year did the doctor tell me not to take my medicines before the tests, which i did for my last test.
my last reading was TSH 0.06 T4 16.1. I asked for a T3 test as I have never been given one and this came back as 3.8 but our local lab levels are from 2.9 - 5.9 so doc says that is OK, although thyroid UK says levels should be 4.0 - 5.5??
The doctor says that I am over medicated, although I feel ok to get through the day, I just do not have any reserves and every few days just have to lay down or I start slurring, which I am sure people think I am drunk, but I am not.
I have never been referred to an endocrinologist and today I asked the doctor if there was any reason why I cannot take a mixture of T3 and T4 as, from reading a lot on the internet, this has had good results. He says he cannot prescribe unless and Endo gives permission, but I have never been referred!!!
Does anyone take a combination and if so, how did you get it prescribed, also, I have heard that Armour is very good, can you buy it in the UK and do you have to have a prescription for it from your doctor or can they go by the Levothyroxine prescription?
sorry to blab on, but, as you may ascertain, I am a little disappointed with the system.
thanks
Amy
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Amy10
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Am sure someone will be along soon to answer your questions about Armour. I just wanted to ask if you have had your B12 tested ? - along with Ferritin - Folate - Iron - VitD. When these levels are low then many of the symptoms can overlap being Hypo.... Having these at OPTIMAL levels will help with the conversion of T4 into T3 and make you feel better generally...
Good idea to ask for all your results and keep the copies so you can monitor your own progress. If the Doc said they were fine is really not good enough - he means the results are in range when in fact some need to be at the top of the range when you are Hypo or have other conditions....
only had them tested last year when I was really ill, but apparently they came back oK. I will ask again for a check and actually get the results, I was not in a good place last time they were tested and so just took the doctors answer as correct.
First of all, welcome to a whole community of folk who are disappointed with the system.
Your doctor's wrong, you're not overmedicated. If you were overmedicated, your FT4 would be much higher than 16.1 and your FT3 wouldn't be scraping along at the bottom of the FT3 barrel. But unfortunately you've got a GP who prescribes according to the TSH, so getting an increase is clearly going to be a struggle. Don't be too disappointed that you haven't had a referral to an endo - those of us who have often don't fare any better, as we often find they're diabetes specialists who dabble in thyroid problems and are as clueless as GPs.
That's harsh - the odd one or two find wonderful endos but they're as rare as unicorn droppings and are to be greatly treasured.
There's a good chance a raise in levothyroxine might be enough to "fix" you, though many do need T3 to feel properly well. What you need in the first instance is some medical research to show your doctor that having a suppressed TSH won't do horrible things to you. I'm on the train and don't have a link to the Dr Toft article required but hopefully someone will be along soon who does. But your T3 really is in your boots - no wonder you have no reserves. Even 4.0 would be on the low side - most need it in the top quarter of the range to feel better.
Step 1, try to get some more Levo prescribed. Step 2 - you may need that referral to an endo and you are entitled to ask for one, given you're not magically well despite your doctors' promises. If you have no joy, then there is always the option of going it alone and sourcing T3 off the internet, but that's a radical step, and probably one for when you've exhausted all other avenues and done lots of reading around the subject.
Hi Jazzw, thank you for your reply, it is comforting to hear that I am not imagining that my T3 is low, I had another test yesterday after demanding one, so will see what that comes back with. I had, however taken my Levo, so not sure if this will effect results.
my only problem with more Levo is that I get palpitations so reduced it slightly to see if any better, which it is, I have also had to get quite cross to be referred, which my doctor said he is now willing to do, so progress.
You have discovered that you shouldn't take levothyroxine or any thyroid hormones before a blood test. Don't be surprised but I don't think many doctors are aware of this either.
I think the best thing would be to ask your GP for another blood test and tell him you have skewed the results by taking levothyroxine before the blood test and the results are incorrect. If he hasn't done (as suggested above) Vitamin B12, Vitamin D, iron, ferritin and folate as we are usually deficient and these can cause symptoms as well.
Email louise.warvill@thyroiduk.org and ask for a copy of the Pulse article by Dr Toft. Question 6 you can discuss with your GP, particularly the part where it says some T3 can be added to your T4 (levo) and how low your TSH can go. Your GP may be amenable about this and it may be better in the long run as T4/T3 may suit you.
Armour must be prescribed in the UK. A few Endocrinologists might prescribe but it is a negligible number. Your doctor may be willing to give you a private prescription but that would work out very expensive over a lifetime.
When you post blood test results, you have to put the ranges as the labs differ throughout the country, that's why you have a query re your range for T3 and Thyroiduk's range.
HI Shaws, thank you for your reply, our lab levels for T3 are 2.9 - 5.9 so they are happy with my T3, although I am unsure, I had another test yesterday, so will see what that comes back with.
I had the vitamin test last year and that came back OK, but have now managed to get referred to an Endo, so will see what that brings.
Whether the surgery is happy with your T3 and other thyroid levels is not the main point. The main point is 'how do you feel on the medication'. Well, or not so well?
When you have blood tests always get a print-out from the surgery. That also gives the ranges which are important. Never take the word 'normal' as we don't want to be in the normal range, we want to be well. Most times doctors say 'normal' but don't take into consideration symptoms we are having and if on thyroid hormone medication, theoretically we should be well if on the correct dose/make of hormone.
Shaws beat me re the comment on ranges but ive also tried supplementing as I suspected my T4 wasn't converting well or it wasn't getting into the cells. When first diagnosed 25+ years ago my then GP had put me on some supplements but from what I have read on hear I put a few more into the mix and I now feel a little better but it gave me the boost to be more proactive and now undergoing tests with an Endo. I've also got my notes from Dr Skinner and see he wrote to my GP and suggested she prescribed either NDT or T3 but she refused. Sadly the message didn't reach me. But I can recommend getting extra tests and supplementing as we are generally pretty low and that's not helping.
Armour is great for me, I took levo for 7 years to no avail!! The system relies on levo because that's where the profit is!! NEVER let you doctor reduce your meds based on blood tests alone. Go by how you feel not numbers.
It isn't possible to source natural dessicated thyroid (NDT) or T3 without a prescription in the UK. But it is possible to get both without a prescription off the internet if you pay for it yourself. There are several different brands of NDT, and I believe that Armour is the most expensive, so it probably wouldn't be first choice for people who have never taken NDT and have to buy it themselves.
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