What now?

So I am.just back from my gp who basically says there is nothing more she can do as there is no reason for my fatigue and bad skin. Referral to endocrinologist and dermatologist. Ferritin 7.2 in her eyes is just below normal as normal is 12!! Thyroid completely normal with TSH 1.56 and FT4 12.5. Antibodies not back yet. Going for spirometry and ECG tomorrow as feel a bit breathless but I "need to lose weight" explained I dont think thyroid helping but she says that wont be causing weight gain as its now "normal". Says vitb12 normal too. I now have iron tablets and to stay on my 75mcg of levo but is there anything else I can do while I wait the 12-18wks waiting time to be seen?? X

22 Replies

  • You sound exactly the same as me 3 months ago.....

    Do lots of reading, that is the key, this site, Thyroid UK, Stop the Thyroid madness and recovering with T3, plus there are facebook groups and twitter (tweeters i think, hypothyroid mom being a good one)

    More importantly change your doctor or ask Louise Warville from Thyroid UK for a list of sympathetic Endochinologists.

    I started T3 late last year, I now take 3 grains of NDT (bought on internet) and some supplements, and am starting to feel my old self...

    If you need any more info just ask..

    Welcome to the path of better Health, you have made the first step!

  • Thanks hun been trying to read up as much as 2 children under 5 will let me lol. Ordered myself SSTM so have started reading. Hoping the endicrinologist im being referred to actually listens to me! Do you know of any other vitamins etc I could perhaps take in meantime that might help? Xx

  • Everyone is different, if you read my profile you will see what my ranges are and what I am doing to try to feel better (self medicating).

    I also take B12, Bcomplex, Vit C, Vit D, Zinc, Magnesium, Calcium, Selenium and Iron.

    B12 and Vit D I feel, are essentials. I also have stage three kidney disease which causes me to swell horrendously. Hopefully that will also even out soon.

    As I said the key is to finding a good Endo and the list is available from Thyroid UK - (Louise)

    Get yourself sorted and you will have much more energy to deal with the little tiddlers!!

  • Im not really sure where to start on self medicating and what I could be low in. Brain fog doesnt help lol x

  • Without wishing to sound negative, I would recommend you are proactive and find out who you're meant to be seeing and ask questions here. If they are good, you can ring ahead to ask to see the actual consultant and not some lackey registrar, and if they're not good you can cancel and go back to gp and request a specific endo.

    Do you know what your b12 levels are? And you could always get a vit d fingerprick test in case you're in need of d. If you google City Assays you can find out how to get one. Cuts out the middleman as gps seem reluctant to do them now. Then you'll know where you are and you can start supplementing if you need to.

  • I will do some digging and find out his name. I dont know my vitb12 level just that great old word "normal". It was taken back in november. I will look into getting that vitd test thank you xx

  • The good thing is that often the receptionist will have a lot of info so you may be able to just ring up and cheerfully and casually ask questions without having to get involved w your gp and all that entails.

    Some of this sounds a lot of bother but a quick and cheerful call to reception might sort a lot of it out. Good luck! xx

  • My TSH was 10.7 in november thats when I was diagnosed. My little brain trying to take in all this info while dealing with a teething 9 month old...sorry if Im lookin like an idiot lol! X

  • No one is an idiot when they are learning stuff that by rights they shouldn't need to learn (but do) to feel well. It is a lot of info and I understand it feels overwhelming. Don't worry about taking it all in at once. xx

  • Thanks hun! Hopefully I will get there! I will order a vitd test and find out my vitb12 level and the name of endo to start with. Think I can cope with that lol! Now time to go pick up my 4yrs going on 14yrs daughter from nursery! Xx

  • Get the Dr Toft book or Louise Warvill can send you the article which says some people only feel better when their tsh is below 1. Make another appt with gp to discuss once your other tests have come in, bring the book/article, and if she won't help you may need to get another gp. Sometimes they're unhelpful until you engage them in a dialogue about this stuff and they realise you're not going to just accept their word and go away.

    You don't give ranges but that t4 seems very low - ? And I bet your t3 is on the floor. You're too symptomatic for 'normal' to explain everything. You deserve a chance to experiment with your dose to see where in the range you feel most well, not fobbed off with the 'within range' thing.

    Will they do a t3 test? If not I would recommend getting one privately. And yes, your ferritin is on the floor and you should know what your vit d is too as that can make you feel awful when low and your conversion may not be good if all your nutrients are pants.

    Do you know who your endo is? Many of us have had bad experiences with endos and there is a TUK list of endos who are more (relatively) open-minded about thyroid issues. You can post the name of your consultant and ask people to private message you about their experiences. It can save you a lot of time and disappointment.

    It would be good if you could crack on with these bits before your referrals come around because (1) it will be harder to pull the threads apart until you are on enough levo for long enough and (2) you'll possibly fare better with consultants if you feel you're on top of this stuff.

    This seems like a lot of stuff but stay here and keep reading and it will all fall into place. Good luck!

  • Oops, jacquikent got there first :-) so sorry for all my duplicate info. x

  • Ha ha we were both typing at the same time.... :)

  • Yes! Great minds think alike. :-)

  • Thanks hun. FT4 range is 9-24. Tried telling her it was low end of normal n could my FT3 be checked n was told no need thyroid normal! Jeeeeeezo!!!! Lol!! Brick wall springs to mind! She not taking any more bloods until 4wks time to recheck thyroid levels. In july I was 0.96 and 12.6. Should I just ride it out on 75mcg till I see endo whose name I unfortunately do not know?! Xx

  • My advice is no, do not do that. Find out the name of the endo and see if you can get some private feedback first. Read as much as you can here and make another appt w gp to discuss. If you can be 'in range' ie 'normal', why won't she let you be *higher* in range and see if you feel better.

    Your tsh is rising possibly because, like a lot of us, you may need a little more meds in the winter. Your t4 is on the floor. It should be at the top of the range. I would change gp.

  • Hopefully you with get a sympathetic Endo who will listen to the symptoms not go by a PITUITARY thyroid test!

    Ask your GP for the results of all your recent tests and post them here, someone more knowledgeable will come along and look at them for you. Putting them on your profile is always best..

    List of symptoms below:


  • So vitb12 is 444 and endo is a professor collier at ayr hospital ayrshire scotland xx

  • Kirsty, you can post a question asking whether members have seen Prof. Collier at Ayr but ask for replies to be sent via private messages.

    B12 444 is unlikely to be deficient but most on this forum supplement until it is high in range. 500mcg-1,000mcg methyrlcobalamin sublingual lozenges, spray or patch should be enough plus a B Complex tablet to keep the other B vits balanced.

    Take your iron tablets at least 4 hours away from Levothyroxine. Take each iron tablet with 500mg-1,000mg vitamin C to aid absorption and mitigate constipation.

    If you've only been on 75mcg Levothyroxine for 3/4 weeks you can expect your TSH to be lower and your FT4 and FT3 higher at your next blood test.

  • Thanks hun. Ive ordered b12 lozenges from amazon today. I will order vitd test tomorrow wax too late today by time I got round to it. I will need to get some vitamin c and some b complex...any advice on best ones or where to buy? Will post re endo. Thanks for all your advice xxx

  • Kirsty, I use supermarket brand vitC and B complex.

  • Thanks hun...im on it

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