Hi all, have had to do my results again as I forgot to put any of the ranges on the 1st post or any of my history! I'm 41 and have been on 100mcg of levothyroxine for nearly 4 years now. I still have no energy, could sleep all day given the chance, was a size 12 in 2011 when I was first diagnosed and am now a size 16-18 and cannot shift any weight no matter how hard I try. Major brain fog which annoys me as I've always had a fantastic memory, dry hair and dry brittle nails & I get a lot of headaches. I also take amytriptaline, fluoxetine and was put on folic acid after my last blood test which was about 6 weeks ago.
Vitamin B12- 227 ng/L (190 - 700)
Folate - 4.1 ug/L (4.5 - 18.5)
FSH level - 19.7 iu/L
LH level - 26.6 iu/L
TSH level - 3.4 miu/L (0.3 - 4.20)
Free T4 - 16.8 pmol/L (12.0 - 22.0)
Free T3 - 4 pmol/L (4.00 - 6.80)
I was told that I have enlarged red blood cells and to be tested again in 3 months. Any help on these results would be great, thanks.
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nickycomm
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Hi Nicky, I can see why you aren't feeling well. Your TSH is too high and your Free T3 is barely in range and that is the important one to raise. You could either ask for T3 in addition to your levo but since your free T4 is also fairly low, (not as bad as your ft3) perhaps just a raise in your levo will help enough.
Have they addressed your B12 and folate levels which are too low. Here is what to aim for so that you get maximum effect from your thyroid hormone.
Underactive Thyroid and B12 deficiency go hand in hand, it has taken me years to find this out as was feeling exactly the same as you. You will need to push your doctor as your B12 is just over the lower limit as they will be reluctant to treat you. If you have face book check out this group on there - New Beginnings B12 Deficiency Information and Support Group, they have so much help and advice and also letter templates that you can give to your GP so you get the treatment you need. If your doctor does give you B12 (you will need injections and NOT tablets as tablets only work if you are deficient through diet) you will also need to raise your folate and ferritin levels as you only get a good uptake of B12 if these are in the higher range. I do hope you get sorted as I know exactly how you are feeling and everyone deserves to feel well
If you don't mind me asking, how did you get sorted. Every time I go to the doctors I just feel as though I'm being a pain and being pushy but this has been going on for so long now that I feel I've got to be a bit more demanding?
I was on iron tablets for just over a year and the doctor told me that I didn't need them anymore after she had seen my test results! I've been given folic acid so what does that treat? Ive looked up things so many times and read so many articles but it's so frustrating as my brain won't hold any of the information and I've forgotten it about 5 minutes after reading it
She just gave me the folic acid to take once a day and said to go back in 3 months for a fbc and folate test. I've got an appointment booked with her for next week for something else...there's always something! Might do some delving over the weekend before I see her and see what she says. I'm a bit worried about going in and demanding that something is done though..guess I'm just a bit of a flake
I put two stone on when taking amitriptyline as a migraine prophylactic (which didn`t work). When I stopped taking it on my own, with no help from my GP I eventually lost the weight I had gained and that was before I was on levo. If only I could get my thyroid meds sorted out properly I might be able to lose the other 4 - 5 stone I need to lose!
I'm not sure that it does a lot for me either regarding my headaches and I did stop taking it for about 2 months and then got a lot of pain in my left shoulder and arm which the doctor said was tendonitis of the bicep so to start taking it again but even that's not gone. I'm a bad egg!!
I have alot of pain too, including my left shoulder and arm but I amitriptyline didn`t help with any of it. I have T3 barely in range too like you and am currently trying to get some from an endo, however my TSH is under 1 so it doesn`t look very hopeful. As others have said your TSH is too high. Good luck with everything.
Thanks to everyone for your help. I'm going to arm myself with plenty of notes before my visit on Tuesday and hopefully I'll get somewhere, thanks again
Well that was a complete waste of time. Just got back from the doctors and she wouldn't agree to anything at all. Said I was in range with everything and wouldn't budge on thyroxine at all and said I didn't need B12 as I was in range. She doesn't think that my thyroid is the problem with my symptoms at all and that it's fibromyalgia and said she would refer me to a support group. I was so upset that I just walked out and she said she was very sorry that there was nothing she could do. Any advice appreciated x
I was just at that same point two months ago. Frustrating as hell but you can either accept it or read more. And treat yourself. Quite liberating in fact. I have vits as per advice here and NDT and before my op last Friday was beginning to feel so much better.
Where could I get NDT from though? The big problem for me is I don't have a clue what I'm doing and my brain is so bad at holding information that I've forgotten everything by the time I've finished reading it.
Nicky, I'm afraid that your experience is not uncommon amongst the folks on this board.
You have three choices.
Either 1) Do what your doctor tells you - ie suffer. Fibro is, in my opinion a cop-out when they don't really know what the problem is. People who don't get well when the results show them 'within range' generally seem to be fobbed off with a diagnosis of fibromyalgia, ME/CFS or depression.
The problem is that the 'normal' ranges are just a statistical fudge. Some people can be well outside the range and still feel fine, others can be inside the range and feel terrible. But doctors are very definitely NOT statisticians and most imagine the 'in range' means healthy. What they should be looking at is whether your figures are optimal, but most doctors don't even know what optimal is.
Or 2)see a private doctor who is outside the NHS. As far as I know there are virtually no doctors within the NHS that will treat if you are 'in range' but there are a few holistic docs who will.
Or 3) you do what so many of us on this board do and self treat.
In your case your folate, ferritin and B12 are all below range and should be at least half way up the reference range at least. Until they are dealt with you won't know if you need more thyroid meds, but somewhere along the line you'll want to see T3 (and to a lesser extent T4) towards the top of the reference range, and TSH around 1.
You can buy folate (better than folic acid which some folk don't manage to convert properly to folate), ferrous fumarate for iron/ferritin and B12 (methylcobalamin sublingual lozenges) without problem and perfectly legally in the UK (Amazon is a good source). You also need vitamin C is quite high doses. So-called wholefood vitamin C is better than the stuff you get in Boots or Holland and Barrett because it comes with all its co-factors in food form. There is some evidence that ascorbic acid alone causes problems with mineral balance.
You cannot buy thyroid meds that way because they are prescription only, but many of us buy them from abroad. To be honest I wouldn't, at this stage, self-treat with thyroid meds until the rest is sorted out. However you should make sure that you take your thyroid meds at least an hour before and 2-4 hours after food and drinks with caffeine or calcium. That by itself will increase absorption and conversion if you aren't doing it already.
There is LOTS of information on this board, and on the Pernicious Anaemia Society board on Healthunlocked. Not everyone who has low B12 also has the auto-immune disease called Pernicious Anaemia (a horrid misnomer, because not everyone low in B12 is anaemic), but the group has loads of good information.
Thanks so much for all your information. I had already ordered some b12 patches from Amazon so have put one on for the first time today and will look into ordering the others things too.
I was tempted to go private so will have a look at that option too. Just so dissappointed that she can't/won't do anymore for me as I'd really got my hopes up for this appointment today.
No, not daft, my bad! I saw ferritin mention further down and jumped to conclusions, because it is normally tested nowadays.
Your enlarged RBCs would suggest that you are short of iron, though. So why has she not tested haemoglobin and ferritin, which is a measure of the stored (or reserve) iron you have in the system? It will probably be very low.
I agree, you need a better doctor. Or a referral to a haematologist. Or preferably both
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