So, at the end of February after years of feeling unwell and every sign of being hypo, I had a tests done that showed some signs of hypothyroidism:
TSH 3.7 (0.27-4.2)
FT4 10.4 (12-22)
FT3 4.6. (3.1-6.8)
I took them to my GP who said that they were interesting but because the TSH was in range, there was nothing he could do. I paid privately to see and Endo who said they saw readings like that all the time and it meant nothing, and dismissed my symptoms as being run down. After a lot of though, I decided to self-medicate with NDT and joined this site and found lots of people were doing the same. I wasn't prepared to feel like this any longer while waiting for my blood to hit the magic number.
I started self medicating this last week, and decided to have another test done on the day I would start, I suppose so I knew exactly where I was, and also out of curiosity to see where things would end up when I felt well. This morning I got the test results back...
TSH 5.14 (0.27-4.2)
FT4. 11.3 (12-22)
FT3. 5.1 (3.1-6.8)
So T4 and T3 are up but TSH has hit the magic number. Now there is no figures in relation to antibodies, which were negative last time, but the Drs note says that the antibodies were positive which indicates Hashimotos.
I suppose my question is whether this small change is worth mentioning to my GP for the sake of perhaps being given a trial of at most 50mcg levo, or whether I just stick to the NDT which I already feel the benefits of, and play it by ear. I'm just not sure the change is significant enough to get adequate treatment, plus so many people feel unwell on levo - Any help greatly appreciated x
Personally, I'd prefer to be treated by GP even if I don't always agree or do what they suggest. It's a lifelong condition and it can get complicated especially if you develop other conditions. GPs are a resource you're paying for in your taxes. I always listen to mine's opinion and he sometimes listens to mine and we often disagree but so far it's amicable. I can't see that there's anything to lose by going back with your new test results (and telling him what you're taking). Levo worked well for me for 20 years ( but I took what I needed to, not what I was told)
Sheesh Jigsaw, I get so incensed by the rigid attitudes of some GPs. I feel sorry that you've had to go down the path of paying for your own private tests and meds. Can you change your GP? Nothing to do with thyroid this but I have a friend who developed a swallowing problem so he went to the doc, but blood tests came back normal. He said to GP the results might be normal but I'm still having difficulty swallowing. So GP sent him for a scan and low & behold he had a tumour on his oesophagus. 6 weeks later he was in having major surgery. During my life and until that point, I always backed off if GP said my results were normal. Not any more! And I wouldn't describe your 2nd set of tests as 'small change'. If you don't want to change your GP I'd go back armed with research, including your latest results and tell him what you expect from him as your doctor. Re: Levo, well I've been on it for about 12 years and still feel ill with many symptoms. It wasn't until I discovered this excellent forum that I realised that I don't have to suffer, so I'm on my own journey at the moment, starting with my vitamin levels. Good luck!
Thanks for your replies. I really feel stuck between a rock and a hard place as there is no other GP surgery in my area, so changing will not be easy. I find that my GP is very dismissive towards me as I have been diagnosed with depression, fibromyalgia and CFS and he sees my research as a desperate attempt to find a reason for these 'unlucky' conditions, when there is no reason to be had. My argument, that there is something else going on, is rubbish. He smiled rather smugly when the endo said my thyroid was fine, and the initial results were a variance on normal.
If it is Hashis, is there anything other than thyroid replacement that my GP would offer? Ultimately I would like him in the loop but I want to stick with NDT for now. I'm still not convinced even at that level that he'd treat me anyway. It shouldn't be this difficult, should it?
Challenge him next and ask how fibro and cfs starts! There's always a reason for something like cancer=cell abnormalities, diabetes=pancreas problems leading to insulin problems, etc. there are no starting points for fibro, me, ms, cfs. Drs use these when they don't know what's wrong
Your gp wont care, trust me. Been there done that. Ndt is better for you so why change that for synthetic t4 only? i share my priv blood tests with nhs endo with specific instructions under DPA not to disclose to nhs gp. I pay so why should Miss Ignorant get them free. I am a cynic with a thorough dislike of the nhs after they robbed me of several years of full blown life while i lived a half life thanks to their negligence
I would definitely take the latest results to the GP. IF you don't feel like going in person then maybe post them a copy of the results with a letter asking for the doctor to review them.
TSH is now over range.....TSH appears to be the magic test, although T4 and T3 are within range. You might get nowhere but you might get further investigation or trial of treatment.
Treatment under a doctor is always going to be safer (and cheaper) than going it alone with self-medication.
One of the leading causes of death is medical error. If the GPs are ignorant of thyroid dynamics (and the majority ARE), and others couldn't care less, then listen to your body! Go on the "Doctors Are Dangerous" website.
I too would share these latest results with your doctor. But I would tell him what you are taking and how you are feeling on it. I would not ask for medication from him at this stage. It is possible you will get a response from him along the lines of 'don't you realise you're poisoning yourself ... yada, yada, yada'. But we all know that NDT is not poison. If you feel better on NDT, you stick with NDT. If at some point in the future you don't feel better any more - well, that's a battle for another day.
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Thanks for this. I do feel determined to carry on with the NDT, I already feel benefits fatigue-wise after only 5 days! Could be the placebo effect, but if it is, I love this placebo. I've had a social life this weekend for the first time in years without needing an afternoon nap. However, I feel someone medical ought to know in case something happens to me that possibly not even related, just so they have the full picture of what is going on with me. This may sound a little paranoid but I have had 2 major brain infections in the past where I wasn't able to communicate, and having a full history was essential for my treatment, so I suppose there is a part of me that has a streak of unease about keeping quiet in case it becomes important. I'm sure it won't, but then, I was sure the second brain thing would never happen after the first and it did. I think you're right, tell him and prepare to be lectured but stick to my guns until I'm satisfied one way or the other that I've given NDT it's best shot :). Thank you
FWIW, I would give your GP the test results and ask they are put on your medical record and tell him about the NDT. GPs are unlikely to prescribe NDT as it is not licensed for use in the UK, many have either not heard of it or think it is witchcraftery, but it is probably superior to bog standard Levothyroxine which doesn't suit everyone. GP may agree to TFT to monitor your progress although this may not include FT3. In time, your CFS and Fibro symptoms may resolve which would be proof that hypothyroidism was always your real problem. If your GP isn't co-operative just carry on with your own regime sending TFT results and dose changes for inclusion in your records as and when.
Ignorance is bliss, so they say, but we definitely don't expect the medical profession to be so. We are surprised to find out that we have to find the truth for ourselves with particular in regard to the thyroid gland.
Look at the following link and you will be surprised and your GP will be stunned but it still wont change his mind:-
On the left-hand column look at Related Conditions and then Getting a Diagnosis.
Thanks everyone, I appreciate all of your replies, each one had very valid points that I've had to consider. I've decided that I'm definitely going to share the results with my GP, even if we don't discuss them, but I am going to keep going my own way as I am not convinced that the NHS, even if (and based on my own belief, and what many of you have said, they wouldn't) they did offer me treatment, would adequately control my symptoms on the correct dosage of levo as opposed to just lowering the TSH back to mid-range and considering it a success. X
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- Any help greatly appreciated x
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