Hi guys. I'm new here. Looking back, I think I have had an underactive thryroid since I was 14yrs old. (I am now 38yrs old.) I had my 1st NHS test when I was 20yrs old, which came back "normal". When I was 30yrs old, I went to see Dr Peatfield. Under his care, for the last 8 yrs, I have been taking:
2 grains of armour 3 times a week.
25mcg of Cytomel 3 times a week.
C-1000 TR (vit C) 1 tablet, 3 times a week.
Coqu10 30mg 3 times a week
Nutri adrenal extra 3 times a week. (In the beginning I also took some stuff to get rid of my constant thrush, but I can't remember what that was.)
This has kept me going and I felt somewhat better, but I have always felt I could feel better still. I have no fertility/pain issues, but have most of the other symptoms. I have had Gestational Diabetes twice despite having a great diet, and I am now "pre diabetic." As well as the low sugar diet I have always followed, I have, in the last 6 weeks, cut out gluten.
Recently I went to the doctors (with another issue) and they tested my thyroid. They finally agree that I have an underactive thyroid (they did more tests this time, than they did 18yrs ago.) I told them about the medicines I was taking. They asked me to come off them for 3mths, then have blood tests done again, so they can see the full picture of what they are dealing with. (as obviously, being on the above meds will make my test results look "better" than they really are.)
Can you please take a look at them for me, so I know what "optimal" is, rather than just "normal"?
Free T3 2.8 (3.5-6.5)
Free T4 8.9pmol/L (10.0-22.0)
TSH 0.22mU/L (0.10-4.00)
Vit B12 Normal (It states no figures/ranges)
Ferritin Normal 24ug/L
Mr Doctor seems quite open to trying things. She has said that my T4 and T3 levels are too low and after my re tests she thinks they will go lower and is happy to start me on a trial of levothyroxine. However, it is my understanding that this is a T4 drug, and that I will need something that converts T4 to T3. Also, am I right in saying that if I have high levels of RT3 (which hasn't been tested), wont that stop the T4 from being absorbed?
Also, can I get by without the missing tests, or should I get those privately tested by Blue Horizon and take them to her afterwards?
Thanks in advance for ANY advice/info you can give me. Eleanor. xxx
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EleanorM-G
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Levothyroxine is not a drug it is synthetic T4 - the inactive/storage thyroid hormone. Most people do fine on levo only. You really need to do something as it looks as though you have secondary or central hypo (low everything). As your TSH is low, you might need T3 as well, as low TSH can affect conversion. You also need to get your ferritin up to at least 70 (if that is a UK result) and B12 needs to be around 1000, not just "normal".
Ferrous fumarate 210mg x 2 per day either on prescription of from pharmacy (Tesco or independent) - tell pharmacist that doctor knows you are taking them and it was cheaper to buy them than get prescription. Take with 1000mg of vit C to avoid constipation. If they give you a bad gut, try iron biglycinate (buy online). Things like Floradix aren't really strong enough to raise iron if it is low.
So why did your GP not prescribe iron (if you get free prescriptions it is best to get a prescription, otherwise buy as in previous post - same stuff)?
Because my results are "in range" so to her everything is ok. I pointed out my levels were on the low side. She said there was nothing she could prescribe as everything was "normal", but I should feel free to get an iron supplement if I wanted.
Time to ask her what she intends to do to make you feel well. She's drawing a huge salary for ... what? Can you see another doctor, perhaps one on the TUK list?
I'd just go back to taking NDT, but every day, buy necessary supplements and write the GP off. You just know she is going to go by TSH only and keep you ill for ever.
Ah - another doctor who likes torturing their hypothyroid patients. I wonder why there are so many about?
Coming off meds for three months could be catastrophic for you, in my personal and untrained opinion. Your thyroid hormones are already substantially below range. They will almost certainly get a lot lower.
I think your doctor has suggested a dangerous plan and you should refuse to follow her instructions. If you want to try levothyroxine, then I think your doctor should have just switched you to it, at a dose of (say) 75mcg levo per day, without spending three months with no treatment.
Currently you take the equivalent of roughly 77 mcg levo per day according to my calculations, so 75mcg levo is a good starting place.
Edit : The above bit in italics is wrong, sorry. See my post below.
But can I just point out... There are many people on this forum who self-medicate. You could do it too, and just increase your dose gradually and pay for private testing. (We can interpret blood test results for thyroid.) I would suggest you might want to change the brand of NDT you use because you are currently taking the most expensive one in the world. There are much cheaper ones available. You may have to use trial and error to find one that suits you, but you could save £100s per year.
Thank you taking the time to answer. Yes, I agree with you. I am very scared to come off my meds. Based on your advice, I am going to go back to the docs and suggest she put me onto the levo now rather than later. To be honest, I felt so grateful that finally the NHS was going to treat me, I didn't like to "push it". Now I am home, I am wondering why after nearly 20yrs of them NOT treating me, I should feel grateful??!!
Oh, ps. I have just ordered some "nature-thyroid" instead of the expensive armour! My plan was to start it when my armour ran out.
I think you are going to have to use all the diplomacy you can muster if you tell the doctor you are going against her advice. They are delicate little flowers with big egos and they don't like it when people disagree with them. But I really think giving up all thyroid meds for three months is insane. The risk of myxedema/myxoedema coma must be taken into account - it cannot be dismissed.
You could print out the link above and show it to your doctor. She might pay attention to it, but don't bank on it.
And I must apologise - I got my sums wrong when calculating how much your current dose is equivalent to in Levo terms.
You currently take 6 grains of NDT a week. One grain of NDT is roughly equivalent to 65 mcg Levo. So your total weekly NDT is equivalent to
6 x 65 = 390 mcg Levo
You also currently take 75mcg T3 per week. T3 is roughly three times as potent as Levo. So your Total weekly T3 is equivalent to
3 x 75 = 225 mcg Levo.
Total Levo equivalent per week = 390 + 225 = 615 mcg Levo.
This averages out at about 88mcg Levo per day. So, you could start on either 75mcg Levo or 100mcg Levo. Since you've been under-medicated on your previous dose I suggest 100mcg Levo might be better as a starting dose.
The first thing you have to learn is that there's no such thing as 'normal' - especially when we're talking about thyroid stuff. You must insist on having a number for that B12 because it is probably very low.
Yes, levo is synthetic T4, but it is supposed to convert naturally to T3 in the body. You don't need to take things for conversion (usually). However, as HB says, with such a low TSH, you could possibly have problems converting, meaning that you will need to continue taking some form of T3. That could be difficult as doctors rarely prescribe it and think that levo is the be all and end all of thyroid hormone replacement.
Be aware that any NHS doctor will want to put you on levo, because that's all they know about. They have absolutely no understanding of T3, NDT, etc. But, levo might not be the right choice for you, for the reasons stated above. And, as you've been buying and supplementing your own T3/NDT, it might be a good idea to continue with it. However, I do find your protocol of three days this and three days that, rather strange. Such uneven dosing of T3 cannot be good. You need a steady intake daily.
Yes, you can get by without the missing tests. rT3 is a bit of a red herring, really. No doctor will know how to interpret it, and the only 'treatment' is high doses of T3 for a few months. rT3 does not stop the T4 being absorbed. What it does is block the T3 receptors so that the T3 cannot get into them. But, I very much doubt you have any rT3 because you do not have any T4 to convert. (rT3 is produced during conversion, when the wrong atom of iodine is removed from the molecule of T4.) So, I wouldn't worry about that.
I'm not clear from your post, whether these labs were done before you stopped your T3/NDT, or three months after. If they were before you stopped it, then for god's sake do not stop it! You will kill yourself. If they were done after the three months, then it is obvious that you are hypo - any idiot can see that, and your doctor should stop messing around and get you onto some form of thyroid hormone replacement (not drugs, as Angel says). But, whether you go onto the levo, or continue the T3/NDT - which, as HB says, you could easily do - you need to do something fast.
The likely reason for your low TSH is the long time you have been taking Armour. It is well known that medications that contain T3 suppress the production of TSH - even if there isn't quite enough free T3 in the system. I stopped my Thyroid S for eight weeks, and took levo instead. At the end of that I felt terrible, my T3 was almost non-existent, but my TSH was still undetectable.
What that episode did for me, apart from adding 8 kilos to my weight, was show that I do not convert levothyroxine to T3. But that is unusual, so definitely worth your while trying levo, because it works for most people. Your doctor will have to go by T4/T3 and not TSH for quite a while, though.
High RT3 is unusual in people not treated with levo, so its unlikely to be your problem. I think (another self-educated) that you have just been under treated.
Thank you. I have just made an appointment to see my doc at 8am tomorrow to try and get that levo now! In hindsight, rather than waiting 8 wks to find out levo wasn't working for you, when do you think you should have come off it? Also, once you were taken off it, what did you go on instead?
The trouble is that the feeling ill kind of crept up on me. There was lots else going on at the time, and I was recovering from flu, so feeling fairly crappy anyway. Then of course, when I realised what was happening I had to wait two or three weeks for an appointment and another week for a blood test! I was desperate to restart the NDT but felt I had to wait for the blood test. I restarted the NDT the moment I had the blood test!
[Then my bloods went missing and they retested a week later, by which time I had been on the NDT for a week] The results from the lost test appeared the day before the results from the test a week later. In those seven days my T3 had jumped from 1.1 to 3.4 (range from 3.2 to 6.5).
Now I am on NDT only, which I source from Thailand like so many of us. And I won't allow them to talk me out of taking it again! My doctor does know, and continues to test (and demand free T3 from the lab!) and basically allows me to manage myself. I am very lucky to have found someone who will support me (but he freely admits that he has other patients who don't do well on levo, and he feels it is more than his job is worth to tell them about what I am doing).
But I feel so sad for his other patients who haven't found a solution, and who he leaves suffering. I do realise that is probably asking a bit much of a man who has a family to feed to break the rules so blatantly, but it still saddens me.
Thank you to everyone that commented on my post. I went to the docs & she agreed to put me on 25mcg of levo. (Not enough in my opinion based on what I was taking before, but the "standard starting point" Arrrh!!!!) I'm hoping it will at least get me to my next blood test in 8 weeks (I get that down from 12 weeks.) Ifit wasn't for you guys I wouldn't have even asked.
She said there is no alternative to levo or a T3 drug that they could give me, so unless levo turns out to be the "perfect cure all" I foresee that I will be back her in 8 weeks with my test results, asking for help with self medicating........
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