So disappointed! Warning: this may turn into a rant ;-)

So, I was started on a three month trial of T4/T3 (150/20 split) in February. As my TSH was suppressed after 8 weeks my Endo said I should 'leave things as they are for the time being and we'll have another look in a month'. I moved areas in April and my new GP referred me to a new Endo with an appointment on 20th June. I've been preparing myself for the past couple of weeks (as you do), only to get a telephone call this afternoon to tell me that the appointment has been cancelled as the Consultant has left and his locum has also left. She said that a new appointment would be made when another locum could be found. I asked if she could put a note on my file that I need to see someone with an interest in thyroid and she said "oh, so you're not a renal patient then?". Don't the GPs tell them what our problem is when they refer us? I had this problem with my last Endo - he was a 'Consultant Diabetologist' on his letters. Meanwhile I'm left, getting more and more poorly, with more and more symptoms returning... I'm just so terribly disappointed. There! Didn't really turn into a rant after all! I think I'm just too tired! K. P.S. Oooooh, very cleverly, I've somehow managed to attach a photograph to this post - I have no notion how I did that, and I've pressed 'remove' in editing, to no avail. Sorry, lol! K.

28 Replies

  • Are you still on 150/20?


  • Oops I tried to edit it out for you and it put my photo in there!! Luckily I previewed it so could cancel. Don't know why this is.... :D xx

  • Lol! That sounds like something that would happen to me! I confused the photocopier so much that it thought it had a paper jam when it didn't. Don't let me near technology!

  • I'm sorry you are having so much trouble seeing a thyroid specialist :( They thought you were a renal patient? Oh dear :(

    I hope you get to see someone soon and that it's someone who knows that your thyroid isn't in your kidneys!!!!

    Carolyn x

  • Oooooh, now when I tried 'reply to this' I get the 'snap 404' message... Could it be because I'm on my iPad? Here goes...

    Rod - yes I am... GP won't increase - says I've to see Endo as she tested my antibodies a fortnight ago and they're raised 161 (range 1-6).

    Clarebear - thanks! It's gone.

  • Half the time no-one takes any notice of elevated antibodies!

    Renal specialists, hmm, is someone taking the product of the kidneys?


  • LOL!

  • Not surprised you are disappointed. There you are, counting down the days, all excited, pinning your hopes on your appointment then - a great big nothing!

    Suppose you could look on the bright side and consider yourself lucky to have escaped having your thyroid treated by a renal specialist!

    Honestly- it brings to mind that announcement you hear in Tescos 'Would all multi-skilled come co the checkout!'

    Liz x

  • Ha! I know! I did a check on the Endo I was supposed to be seeing today and he's Chaired all sorts of conferences on Renal issues and published many papers on diabetes... That's what prompted me to mention thyroid to the girl who called to cancel my appointment... What happened? Did they just assume in the 70's at the advent of synthetic thyroid meds that they had the whole situation 'sorted' thereby removing the need for anyone to specialise in thyroid? Because when I was diagnosed, My GP told me that hypothyroid was 'easy to treat with one tablet a day' HA! Oh, how misinformed was I? LOL! K.

  • Based on the assumption that you will be seeing a thyroid specialist (not a certainty at the moment I gather!!!) it might be worth you discussing the possibility of changing the T3/T4 balance, or to NDT instead. Some people need more T3 or T3 entirely with no T4. You need what is right for your body and hopefully the endo will discuss your options with you. Jane x

  • Not unusual to see the forward thinking Docs move on and the time servers stuck in a rut -frightened to make a noise against the establishment. 2 helpful sorts have just left my practice.

    Thankfully we have a few Drs left [at large] prepared to stick up for medical ethics and proper independent approach to patient care.

    The recent faff over NHS cover ups doesn't inspire right now, though.

    Root and branch reforms needed?

  • Have you had a creatine and electrolytes blood test? If these were high then they could be looking at chronic kidney disease. If TSH is high it can be a pituitary problem or kidney issue. Look on the Chronic kidney disease does have similar symptoms to thyroid.

  • Hi Chickens12, no, have been told kidneys are fine - have never had electrolytes checked, but I had very high serum CK levels before I was diagnosed last September but these very quickly fell with the addition of T4...

    19th September 2012

    Free T4 - <1. (11-25).

    TSH - 50.8 (0.27-4.200)

    CK 1370 (<200)

    26th October 2012

    FreeT4 - 11 (11-25)

    Serum TSH - 33.0 (0.270-4.200).

    CK 143 (<200)

  • When you say your still feeling poorly, I'm assuming the palpitations are one of the biggest problems? How long have you been on t4 only? If you are not converting/absorbing you may have t4 'pooling'. Did your doctor test your ft4 and ft3 also? If so, post the results and ranges. TSH is nearly always suppressed when taking t3, so don't take any notice of that. Have you read this link from STTM?

  • Hi N-J, no, no palps - don't suffer with them... I'm just feeling the old symptoms coming back after they had improved with the addition of T3 (exhaustion, assorted pains, hoarse voice, enlarged tongue, difficulty going upstairs - all the usual)... ;-). I was on T4 only between September last year (starting dose 75mcg) and February by which time I had increased to 200mcg without feeling much benefit. Endo agreed to reduce T4 to 150mcg and add 20mcg T3 which I added very slowly, starting with 5mcg split into two doses, working up to my current 20mcg in two doses of 10mcg, increased very carefully over a couple of weeks or so. My TSH was actually close to suppression on T4 before starting T3, so why he used that as a reason not to increase, I don't know - but he did know that I was moving out of his area, so who knows(!). I feel that I need an increase as initially I felt much improvement with the addition of T3, but my new GP won't increase before seeing my new Endo, whom I was supposed to see today, but appointment has been cancelled... Leaving me, I feel, under-medicated! Thanks for link - yes, this is what I think too - my previous Endo called this one of "those militant American sites" and only agreed to look at Dr. Toft's book when I told him it was published by the BMA! He said he'd never seen it before (sigh). Last bloods TSH <0.04 (0.35-4.0), FT4 15.5 (9-21), Total T3 2.4(0.9-2.5), Anti-TPO Ab 167.4 (0-6), B12 - normal - 671 (180-1000). Waiting for results of gluten intolerance test as antibodies are up... K.

  • you are on a very high dose of both. Is this your first time on T3? If so I would suggest a lower starting dose eg 5-10ug. I have been on 10ug T3 with T4 for the last 10 years and last year tried increasing the T3 to 20ug and it made me feel worse. 20ug is too high a dose in my opinion. For me 10ug is the max and I'm starting to think even that might be too much (its quite potent stuff). Symptoms I got on 20ug T3 were muscle fatigue, aches and twitches. Feeling dizzy/bit out of it. Sensitive to adrenaline/overproduction (got weak and shaky form salsa dancing causing me to feel like I'd faint). Got out of breath easy.

  • Hi there, actually, you helped me in February when I started on T3 - you advised me to go slowly and carefully! I had experienced headaches on the first couple of days when I took the T3 as Endo advised, split into two doses of 10mcg, but you suggested starting lower- so I started on 5mcg split into 2 and worked my way up! and it worked! cheers! K.

  • How long did you stay on each increment before increasing it? 2 months at least? If you change to quickly you might zoom past the dose that makes you feel good and tip the balance the other way (too much is just as bad as too little). The key is finding the optimum and I am finding that takes a lot of time and patience. So far from my experimenting I would say that 0.5 is the best TSH and that perhaps 5ug T3 with enough T4 to keep the TSH around 0.5 might be the best treatment?

  • 20mcg is not a high dose in my opinion. Most people (not in the UK because doctors are worried about prescribing) start on 20mcg. If you are very sensitive to increases whilst continuing to have symptoms, you probably have underlying issues (cortisol, iron etc.) or pooling.

  • It seems to me (and I am only going on personal experience, I'm not a health professional) that your T4 to T3 ratio is rather high. I was on 100 mcg T4 only when I got my endo to agree to trial me on a T3/T4 combo and he prescribed 30mcg T3 (split into 3x10mcg doses through the day) to just 50mcg T4, which proved too much T4 and was reduced to 37.5mcg, which I am on now. My TSH reading is so low that the lab reports have a panic attack every time I have bloodtests done, but my T3 levels (the really important measurement) is fine and, most importantly, I feel fine. My endo was rather concerned about the possibility of osteoporosis (a common concern when TSH is suppressed) and sent me for a bone density scan which came back with an excellent result! (apparently I have the bones of someone half my age! :-D ) I would suggest you reduce the T4, rather than the T3 and see how you go on that. At the end of the day, most of us who have found the optimum combination dose have done so by experimenting ourselves, rather than waiting for doctors whose speciality field is anything other than thyroid problems, because we probably know more about our own condition than they do!

  • I agree that the ratio may be wrong. If you have had pooling, causing reverse t3, you need to clear it and the only way to do that is to drop the t4 right down (I went down to 75mcg) whilst introducing the t3. Granted, it needs increasing again now (increased to 100mcg) but some people stop t4 all together whilst trying to rid the body of rt3.

  • What are you T3 and T4 levels on this combination? I found on 20ug T3 that my T3 levels were right at the top of the range. And in order to have a normal TSH on this amount of T3 I had to be on 50-75ug T4 which gave me a T4 at the bottom of the range.

  • Sorry for the late reply, been away... My TSH was seriously suppressed at less than 0.03, FT4 was low too at 8.3 but my FT3 was almost at the top of the range at 6.3. I was originally on 100mcg Levothyroxine and I had to stop that altogether for 3 days before starting the combination. Hope that helps and you soon feel much better.

  • Hmm i wouldn't say it is a high dose. At one poit i was on t4/t3 meds -I took 250mcg of levothyroxine and 40mcg of T3. Sadly it still didnt' resolve my issues. Now on Erfa (NDT).

    Have you checked the other things out to ensure you are maximising uptake? B12, iron, follate, copper, vitamin D......ooooh there's one more...forggoten....anybody? oh yes ...folate

    The reason i say this is -I was diagnosed hypothyroid about 10years ago now. I'ts been a long I felt I was doing everything -even seeing a lovely doctor privately to help me but still kept crashing after a year of wellness. It turned out to be B12....although my bloods didn't really show it up. Since last September I have been taken Jarrow methy 100mcg under my tongue along side a really good B complex vit. Not only am I better -much much better -BUT I have had to practically half my dose of Erfa (natural dessicated thyroid!) due to the B vitamins....helping the Erfa uptake Wow -never thought it would happen. I remain incredulous....

    Am not saying this is the case for you -but it is always worth looking at.....

    Hope you get that appointment soon -and with someone who specialises in thyroid -you could ask Thyroid UK for their list of docs and then asked to be referred to one of them by your GP -you are allowed to do the hospital have let you down can't see why you can't.... xx

  • My dose of Armour gives me approximately 100mcg of thyroxine and 25mcg of T3 - this seems to suit me quite well at the moment. I wonder if you need to try changing your ratio to something similar? Might be worth a go. xxx

  • Thanks SO much everyone - I really appreciate you taking the time to respond. Lots of food for thought - I am going to look at reducing my T4 a wee bit and see what happens. I've also recently changed brands of my B12 tablet, as my B12 levels had come up a wee bit, so I think I'll go back to my original 5mg one... Hmm, interesting - I hadn't given that a moment's thought. Will keep you posted!

  • People report B12 to be optimum at around 800. My was 180 which was right at the bottom of the range and my endo said I was fine. I told him I was NOT fine and I wanted my B12 brought up via injections to start with. I had 6 injections over 2 weeks and it went up to over 2000 :-) I'm due to have a blood test in a few weeks and will hopefully push for maintenance injections every 3 months. If your B12 is nowhere near that, tell your GP you want the shots.

  • Thanks! Mine was 165 at first, GP said it was fine - he wouldn't give injection but gave me 25mcg tablets on prescription... I bought myself some 5mg B12 methyl and two weeks ago B12 was 671, so it's going in the right direction. Thanks so much. K.

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