Hope you are all well. I need help please with what my next steps should be. Iv'e had private Thyroid blood tests done about 2 weeks ago which show I am hypothyroid. I went to the Gp with these results and she wanted to repeat the tests on the NHS. She only did half the tests but my TSH had dropped back down to under the range and FT4 slightly raised so not under range. So even though my antibodies are over the range she has said that is just a risk factor and all is normal. I also thought I have an Endocrinology appointment that I was waiting for but I have now found out it is a Gastroentology appointment that this GP has referrred me to to find out if I have a b12 deficiency problem.
I've only moved to this area about a year ago and this is the second gp practice I have been to the first one was worse than this one. Thanks to Shaw for telling me about the pulse article which I could use to persuade this GP to diagnose me. I'm not sure how a second opinion works should I just see another GP at that practice or will they not go against what their colleague has already said. Is it worth trying to get a referral to an Endocrinologist. I'm also wondering if because I took a tablet called Provera which is a steroid hormone in between the private and NHS Blood test that could be a reason for the drop in TSH. I desperately want to try and get a diagnosis now before my private tests are really old and I feel very unwell too.
I really do hate going to this GP though as they are rude and dismissive to me. Please could you give me some advice on what I should do next please.
Thanks so much for reading.
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Cn13
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Some doctors are far to superior for their own good. They are in their position to support and help patients struggling for answers. The fact that, to me, they are very untrained in the diagnosis and treatment of patients who have hypothyroidism or thyroid antibodies.
Don't take any thyroid hormones of your own until you get a proper diagnosis. I think you know the blood test it has to be at the very earliest, fasting (you can drink water) and don't take any medications until after the test. Also I'll give you a list of clinical symptoms which you can tick off and give to your GP. Request another doctor. I know they will only do the TSH and T4 whereas we need T3, Free T4, Free T3 too. Ask them to check B12, Vit D, iron, ferritin and folate.
You can tell a doctor that the copy you gave re antibodies is by Dr Toft, ex President of the BTA and physician to the Queen when she is in Scotland.
The NHS wont do all of these test as it is assumed that the TSH and T4 gives all the necessary information but we know that isn't true. You know more now that many doctors
Thank you Shaws for your brilliant answer. I feel so much better when I have some kind of plan of action. Yes it does seem from reading this great forum that I now know at least a bit more than the GP I saw a couple of weeks ago. I get so nervous going to these appointments and it makes me worse when they look down their nose at me. I will make an appointment to see a different GP there and maybe it will go better. Surely they must take notice of what Dr Toft says. Would there be any recent articles that also explain about the antibodies. In your experience do Gp's take notice of Thyroid UK. At my last appointment she didn't even want to talk about my symptoms I had brought the Thyroid UK list with me but she didn't want to know.
I'm also thinking ahead to the appointment if they refuse to do a further blood test should I ask for a referral to an Endocrinologist. I'm determined to get my health sorted out. Thank you so much for your help and support.
She didn't want to know re symptoms because they know none. Whereas before the blood tests and levothyroxine were introduced as 'perfect' replacement for NDT (no blood tests then) and have fallen for the 'promotion' than levo was better than NDT. It may be for some but not for everyone.
With NDT all doctors knew all the clinical symptoms and we were given a trial of hormones. If we felt much better we continued and were diagnosed. Also they looked at our outward signs as well, i.e. temp, pulse, cool skin etc. etc.
They will probably refuse a referral to an Endo as it is assumed doctors are fine to deal with 'ordinary' hypo patients.
That's why many of our members source their own hormone replacements as it is too exhausting trying to get doctors to listen whilst getting no relief of symptoms..
Your high antibodies are possibly the reason for the drop in your TSH. Your doctor is totally wrong about them just being a 'risk factor'. You have Hashi's, where your immune system is slowly destroying your thyroid. Meaning that you are going to get more and more hypo.
However, unless the two tests were done at the same time of day, you can't compare them. The TSH is highest first thing in the morning, and drops throughout the day. It also drops after eating.
Are you on a gluten-free diet, and taking selenium for your Hashi's?
Hopefully you will both see this reply I get confused easily! Yes I am already finding the whole GP thing exhausting I could do without the added stress. Yes it seems like they know very little as when I showed the GP my private results it seemed like she wasn't sure about the antibodies. My private test was done at 9am and fasting the NHS one about 8.30am and fasting too.
I haven't tried the gluten free diet yet. Would you have to be very strict about gluten in things like sauces etc to do it properly. To be honest I am worried about the cost of it as gluten free products seem more expensive.
I only had my private test done 3 weeks ago so I think I am still getting used to the idea that I am hypothyroid. This GP also said that if my Thyroid is struggling putting me on medication might make my Thyroid lazy or something like that is she talking nonsense.
Would your advice be to give up on getting a diagnosis then as I'm finding it hard to know what to do for the best.
I haven't tried selenium yet either could you please recommend a good one to buy please Greygoose. I do have a referral that I'm waiting for to a gastroenterologist do they know anything about the Thyroid?
Yes, your doctor is talking nonsense! She hasn't got a clue! Thyroids can't be 'lazy'. I know what she means, but her choice of words is unfortunate. She means that if you start taking thyroid hormone replacement, now, your thyroid will probably stop producing its own hormone (which does NOT mean its lazy!) which is what is going to happen in the end, anyway. But, that is all to the good. In fact, you want to take enough THR to suppress your thyroid. Because the less gland activity there is, the less antibody activity there is, so less damage to your gland. You want to preserve as much of your gland as you possibly can.
Why? Well, imagine the unlikely scenario of you getting stranded on a desert island for several months, and you run out of your THR in two weeks. What's left of your gland will snap back into action and keep you alive. If your gland has gone, you'll die. OK, so that's not likely to happen, but you could run out of pills for some other reason, and have difficulty replacing them. These things do happen. What if you went into a coma for some non-thyroid reason, and they didn't know about your Hashi's straight away? So many things can go wrong in life, so hang on to your gland for as long as you can.
But, yes, your gland is struggling, and symptoms are going to set in, and it would be best to avoid as much of that as possible. The longer symptoms are there, the more difficult they will be to get rid of. Silly cow should know that!
But, there are disadvantages to giving up on a diagnosis. You want a record of it somewhere on your notes - back to the coma again! Somebody needs to know that you're hypo. And, if you start self-treating without a diagnosis, when they find out, they are going to blame all your problems on the fact that you are self-treating. And, the longer you self-treat, the harder it is going to be to get a diagnosis because your results will be just fine!
You would have to be very strict about the gluten-free. The slightest trace in a sauce could set you right back to square one! But, you don't have to buy gluten-free products - in fact, I would advise against it. If a product contains gluten, it's there for a reason. If they make a gluten-free version, it's not as simple as just removing the gluten, they have to find something to replace it. And that something can be as bad as the gluten! But, if you cook everything from scratch, in your own kitchen, you will know there's no gluten in it, and nothing else nasty either. And it will just cost your what you normally spend on food.
I'm not an expert on selenium. I can't take it, it doesn't agree with me. But, there are plenty of reputable brands on Amazon - I would always recommend you buy your supplements on Amazon. There are no sales persons, giving bad advice and trying to persuade you to buy what they want you to buy, rather than what you want!
A couple of members have mentioned that steroid injections temporarily suppress their TSH for a couple of weeks so perhaps your steroid tablet lowered your TSH. Most NHS GPs will want to see TSH over range or FT4 below range before they will diagnose hypothyroidism.
This sounds like almost exactly what happened to me (although my GP is lovely!). I had a private test that showed TSH over range and T4 under range - repeated by NHS and everything had gone back into range - the culprit was biotin. Are you taking a B complex supplement? If so, you need to stop this at least 4/5 days before testing as it gives a false result. I stopped taking it, was retested and TSH and T4 were out of range again and I got my diagnosis and more importantly treatment.
You must also make sure you are tested first thing in the morning on an empty stomach (nothing but water). And I now stop ALL supplements 4/5 days prior to testing just in case.
Thanks so much for all your replies. Yes I was thinking myself as that GP was talking that what she was saying made no sense. I have made an appointment for the other female GP at the practice which is in 2 weeks. So it could have been that tablet that made the TSH go back down again. I have stopped taking it now it made me feel sick anyway. Your right greygoose a diagnosis would be definitely be the best option. Thanks for explaining things so well. I suppose I will have to try and persuade this other GP to repeat the NHS test or else try and get a referral to an Endocrinologist. I would probably struggle to self treat at the moment anyway because of costs. Do GP's tend to take notice of Thyroid UK I will bring the symptom list and test results sheet anyway and hope for the best.
Thanks for the information on testing minimum97. It's so annoying when these test results are different. I've stopped all B12 which I used to take because I am hoping to get a diagnosis for that too. No wonder I feel so ill. Thanks so much for your help and support.
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