TSH 12.2 and Doctor wont treat - any help?

Hi Im newbie have already asked the question about my test results and what to expect on another post and was kindly told by someone on here that the test results meant I needed treating

Here they are again from last week

Serum TSH level 12.2 mu/l

Serum FT4 level 11.6

B12 - 157 ng/l

Folate - 2.7 ug/l

ferritin - 13 ug/

Previously in September 2012 they were

ferritin was 18

TSH - 7.8

Free T4 - 12.7

have today spoken to Doctor about my results and he has suggested:-

Pregnacare for my B12 being " a little on the low side"

No need to treat the ferritin as this is ok and within range

He thinks Im going into being "slightly hyperthyroid" and the normal course of action is to do a back to back test ie in another three weeks - he said that this can often be a blip and that at different times of the year people are at different levels. When I said about starting now he stressed "that it would mean being on them for the rest of my life" and the Vitamin B12 injections "this would mean quite a few" - Im so sorry to put him out!

Ive stressed to him how ill I feel and his reaction was well we are getting somewhere now but just wait a further three weeks

any help would be much appreciated x jaqui x

16 Replies

oldestnewest
  • Hya

    Gps sometimes like to make you repeat a test to be sure before treating but with those levels you should be treated, especially since you already had high tsh and low FT4 in Sept. my Endo would treat at these results. Your ferritin level is too low and could be contributing to your symptoms.

    I am concerned about your low vitamin b12. My husbands level was 180 and he has a shot every month. He has pernicious anaemia. Try to find out the range. Although, even at that low level it will be contributing to your symptoms.

    Have you had a vitamin d test?

    You could either hang in there and take the test ( earliest in the am ) or see another gp and remind them of your September test and insist on treatment.

    Hang on in there!

    Good luck

    Carolineanne x

  • The range my Gps use for B12 is 200 up Im 157!

    Vitamin D level was 28

  • You really need to make them listen. Speak to another doctor and tell them your result and concerns over the possibility of having pernicious anaemia. As Rod says below if you leave it too late there can be irreversible damage but if you get injections early enough it is fully reversible.

    Your doctor is being extremely negligent by not treating this so you need to make him aware of this, even threatening to go higher if necessary and explaining that you will hold him personally responsible for any irreversible damage. You see we don't know how long your levels have been this low.

    Take someone with you if need be. Check out the pernicious anaemia society, they are very helpful and can give you more info. I think they may have a helpline. You have suffered and been ignored for too long!!!! You will probably feel much better after the injections! Also, ask for tests for pernicious anaemia which are parietal cells antibody and intrinsic factor antibody tests.

    Vitamin d is too low also. Ask your doctor for supplements.

    Good luck and keep us posted

    Carolineanne x

  • Hi and welcome

    I've been reading your last past too and have to say it sounds like your GP should consider a change of career because he doesn't seem to have got to grips with the current one.

    Although you haven't given the reference ranges, (which would be really useful to give a better picture) I echo what others have already said.

    Your TSH is far too high and climbing since last September when it was too high then - how much longer does he want to wait and make you suffer and get more ill and difficult to treat because of neglect?

    B12 and ferritin is far too low. Without the reference ranges I'm not sure of folate but that could be low too (don't take folate supplements before you sort out the B12 because it masks a deficiency in blood test results).

    Telling you to take Pregnacare is a travesty. Although it may raise some the of levels slightly, it is unlikely to make you feel better and you won't get a proper diagnosis of true deficiency.

    As for the statement, "that it would mean being on them for the rest of my life" and the Vitamin B12 injections "this would mean quite a few" this is just ludicrous and neglectful.

    To be honest I'm incensed by what I'm reading and although it is difficult, especially when you feel so poorly, he should be taken to task on this or change your doctor if you can.

    Can you take someone in with you to your next appointment? Can you see another GP and simply say you are unhappy with the lack of treatment?

    Keep posting on your progress and good luck x

  • Hya again,

    Just read through your previous posts and Moggie is right you must insist on treatment. It can be hard when we are as ill as we are. Maybe take someone with you to help if you get overwhelmed ( I do! )

    I do not believe that your vitamin b12 can wait three weeks. Could you have a telephone consultation with another gp? Vitamin b12 deficiency can be dangerous if not treated early enough. Insist on some injections. There is a really good website called pernicious anaemia society that has a forum. Please read about the symptoms. Depression, anxiety and even neurological symptoms like numbness, tingling,walking difficulties and cognitive and memory problems. If you read up on it you will feel more confident insisting to the doctor that you need injections and you will be able to fight your case.

    Also, you may feel a little better after the injections which would help if you have to wait for another thyroid test.

    My cousin had a high tsh over 10 last year and they made him test a few weeks later just to be sure. He is now doing quite well on thyroxine. So there is hope! And definately taking care of the other issues, low ferritin, vit d etc will improve some of your symptoms.

    Hope you get sorted

    Best wishes

    Carolineanne x

  • It was high in september and its high now - I don't think in 3 weeks it will miraculously return to normal. Push for treatment as you are in the overt hypothyroid zone. Also make sure they look for the cause eg antibodies. If you don't have antibodies might be worth looking for another cause eg high estrogen.

  • I cannot add more than all the other posts. You need action by a GP.

  • What a stack of good responses!

    Just want to emphasise that you will simply get worse without treatment. B12 deficiency can result in irreversible nerve damage if it remains untreated.

    Is there any possibility of seeing a different doctor who might take more urgent notice?

    Rod

  • Hi liketoknit,

    How are you feeling this morning and I'm so glad that you asked another questions - people on here are amazing and will help if they can BUT as others have said in the answers, and as I said on your previous question, you really need to start taking matters into your own hands.

    There was a really good tip on here from someone the other day - like you she was getting resistance from her GP regarding treatment so she asked him to write a letter, then and there, on headed surgery paper explaining his reasons why he was refusing to treat her symptoms and then would he please sign it. The outcome was that he started her treatment that day I think.

    If I were in your shoes I would first try another GP at the same surgery and if that does not bring any results then I would ask for an appt with the practise manager to discuss your situation with him/her. In that meeting I would then ask for the above letter to be written regarding the refusal of treatment not only for your high TSH level but also your low B12 (you could also mention pernicious anaemia at this point) and low ferritin and the GP's reasons behind his. If you need help drafting a letter I would always be happy to help you in a private message as I'm a whizz at letters.

    I'm so sorry about yesterday but I was just leaving work and don't have access to this site at home.

    Moggie x

  • Hi Moggie, thanks for this you have been very kind. Didnt have a great night. It sounds desperate but I left another message asking about trust as the opinion seems to be that Ive blindly looked up my symptoms and now panicking. Which is not true it was the surgery who alerted me in the first place and stated I needed to speak to Dr. This I did with this outcome.

    I hoping that I can speak to the Doctor who originally assessed the tests today - not always possible to get an appt but I will try. Will update you when I can. Today Im just going to try and remain calm and do the best I can.

    Thanks again for your support very much appreciated

    Jaqui xx

  • Your welcome - and if you need any more help just shout.

    Moggie x

  • You were hypothyroid last September, so goodness knows why your GP said it's possibly just a 'blip'. As for your GP being a little low, it is very low.

    Do you have another GP in your practice that you could see?

  • Hi thanks for all the responses - I have just now spoken to another GP and they are still saying wait another 3 weeks and re-do all tests so I have nothing else to do but "be a good girl" and wait - I cant shift them on their judgement even mentioning yourselves and the arguements given

    I will of course come back when these are done

    thank you all

    Jaqui x

  • Just realised I said, as for your gp being a little low, you've probably guessed by now I meant your B12 being a little low!!!

  • Its ok I knew what you meant - Im always mixing words up or not thinking of the word I want xx

  • I'll just add that GPs have this absurd idea that once you are put on thyroxine you are "on it for life" - regardless of whether or not you need it (and most people on here DO need it). That was what a GP told me. I lost it with him finally and said "what possible harm can it do to try thyroxine and see if it helps". He had to concede that he couldn't see the harm.

    I've been on it for 4 months. As I said in a blog post, I am now going to stop taking it, on the advise of Dr P. No drug should be for life, unless necessary. Sadly too many doctors take the stance that once something is prescribed you should continue taking it for ever. It never occurs to them that it might have done its job and you might not need it any more.

    I first got stuck in that rut in my 20s when I was put on 5 tablets of beta blockers a day and left like that. It took me 7 years to realise what they were doing. I have never taken any drug from that day to this without taking responsibility for taking it and reducing/stopping it from time to time to see if it is still necessary. (Drives my GP mad, he thinks I should be permanently on anti-depressants!!!)

You may also like...