hi please could anybody give advice on how to try go about this! started levo in aug was doing better and levels up end last year feeling brighter , they have been slowly declining the past 5 months AND im very tired again i have asked the doctor who first supported me that i think i need a increase 3 times when i could see they were not right and hes gone back to the old chestnut " well your within the nhs limits so there ok you dont need anymore medication," i am now at a point were my last blood test few weeks back is pretty much the same as my first blood test when i was diagnosed and given levothyroxine(i was just within the limits then and struggled to get diagnosed) tsh little bit lower now to me this obviously proves that my medcine dose is not working for me (100mg). i also now have sphincter of oddi dysfunction which if you dont know affects a bile valve and can spasm and lack of bile which could be possibly affecting uptake im not sure ?and lots of pain unfortunetly but trying to deal with that as well i have also seen specialist in autumn and he agreed that my free t4 for me needs to about 14 and tsh under 1 is good and seems to work f(i think still bit low for free t4) he showed me some historic blood tests please can anybody advise how do i go about this i know i need the extra medication and feel i should be able to ask my gp instead of more waiting for specialist appointments i have not yet discussed the latest blood test all i want is to be given the right amount that makes me feel well its such a battle and frustrating any advice or help would be much appreciated sorry its it bit long thanks for you time


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19 Replies

  • Sara, what are your recent TSH and FT4 with lab reference ranges if you have them?

    Fluctuating TFTs can be due to autoimmune thyroiditis (Hashimoto's) or absorption issues connected to your bile problems.

  • hi clutter the latest test as follows as far as i know i dont have hashmitos as had the test done twice and negative

    free t4 9.7mol ( 8.0-18.00)

    t3 4.5

    tsh 3.9 (0.0-6.0)

    thanks s

  • just to add my better blood test when things had improved back in autumn was

    free t4 13.9 (8.0-18.00)

    tsh 0.6 (00-6.0)

    but a blood test from 2011 before i got really ill (think had mild thyroid issues when had this done liverpool womens clinic)


    free t4 14.6(8.0-18)

    tsh 2.9(0.0-6.0)

  • Hi sarabrown

    I am sorry you are feeling unwell again but this seems to be the case for many. Unfortunately when the doctors only take account of the TSH for a diagnosis and say we are fine if it's within range and disregard the clinical symptoms the patient has, we are in trouble.

    Email and ask for a copy of Dr Toft's Pulse Online article. Send your GP a photocopy to read before your next appointment, highlighting question 6, wherein Dr Toft says we need to have a low or suppressed TSH, and/or the addition of some T3.

    Your TSH is too high at present for you to feel anything but unwell you need an increase.

  • Sara,

    Although Dr. Stupid is right in saying your TSH is within NHS range, that range is for untreated hypothyroidism. You are taking 100mcg Levothyroxine and are obviously under medicated going by your high TSH and low FT4 which will struggle to convert to FT3 if it doesn't rise. Most people feel quite unwell unless their TSH is just above or just below 1 and ideally FT4 and FT3 will be in the top 75% of range.

    Make sure you take Levothyroxine with plenty of water an hour before or two hours after food, two hours away from medication and supplements and 4 hours away from calcium and iron.

    Ensuring ferritin, vitamin D, B12 & folate are high in range is essential for well being and absorption of Levo. They're often deficient or low in range in hypothyroid patients and people who have issues with absorption which I imagine you do with lack of bile.

    Reiterate your specialist's opinion about your TSH and FT4 desirable levels and how you felt well/er during the Autumn with lower TSH and higher FT4. Increases/decreases are usually 25mcg followed by repeat TFT 6/8 weeks later.

  • sara, your story has been told and retold on this forum hundreds of times. Some of become desperate enough to either try a private endo or get their own hormone away from the UK.

  • hi heloise thanks for your reply how do you get meds from away iv not heard of this or how to go about it many thanks sara

  • sara, if you see a #1 by your name up top on green band, click on it.

  • You have had some advice from a specialist. I should ask your GP to contact him and ask or it may even be that he has already got the info and not taken it in-that sadly does happen. If he says no then ask to see this person again or can you try a trial of an increased dose. He may give into a trial than look stupid before a fellow professional! Good luck

  • thankyou so much for your replies really helpful its so frustrating when you know what you need an your not getting it i will take this advice on and i think i will present a 2 historical blood tests one from 2011 one from march last year and one from autumn when the specialst agreed the levels were working better iv been supplementing with amega vitiman since june so they said my levels are ok im finding im eating better with this disorder eating very low fat and having bit of complan once a day plus lots vit c and b6 for adrenals as they are not great as i was left untreated so long im being very catious with my levo and take it soon as i wake as you described fingers crossed thanks so much everyone its getting bit desperate now as if i cant improve il end up losing my job iv been at for 8 years which would be gutting and but a huge strain on the family as well thankyou again for you support it means so much if i cant get this then i might try get medcine elsewhere if possible


  • ....sorry - which levels did they say were OK ? Do you mean the Famous Five - B12 - Iron - Folate - Ferritin - VitD. ??

    Your stomach issues also point to low thyroid hormones that have possibly been neglected for too long. Slowing down of the stomach cells - and their secretions of HCL needed for the digestion of proteins means that food is remaining in the stomach for too long and fermenting - hence the acid reflux. It could also mean your B12 is badly affected.

    Eating the right sort of fats are important for good hormone levels and brain function. Do you have gall bladder issues as well as the stomach acid ? Have re-read your post and it seems you have problems once foods have passed from the stomach into the duodenum when bile is usually secreted to neutralise fatty acids....

    Glad you do not have anti-bodies and Hashimotos. Hope you soon feel better....

  • hi marz i dont really have stomach acid problems now iv gone low fat, but i used to vomit after fatty food with lots of acid. they say my gallbladders fne and its the bile valve which would make sense the vits have recently been tested by the gastro man and h said all was ok he is brilliant so i do trust him and has saved me a lot of time narrowing this condtion down within a few months as its quite rare but i will ask for copies when i get in, The problem iv got and dont know how to get around and i think wont be helping is with this condition is fat makes this worse and creates pain so i can no longer take cod liver or vitiman e in oil form, it made me so poorly when i took a cod liver oil capsule awfu.l dont know how to get around the essential fatty acids as i know they improve thyroid health especially vit e any suggestions i cant eat oily fish as that makes really it bad to im taking digestive enzymes now as well to try help break things down, the only thing i thought was adding a couple of drops of oral vit e with a meal, i am also starting collagen supplements, im like a creaking gate from all of this and more wrinkly sadly lo!l so i think my collagen has been affected !

  • However good your Gastro Man is I would still want to see the results of the tests he did and their ranges. I was under a gastro for over 30 years after having extensive gut surgeries caused by Ileo-Caecal TB and Crohns - not once was I told that I needed to be on B12 injections for life... Brilliant surgeons have saved my life but the preventative advice is sadly lacking....

    Please could you pop in a few commas and full-stops. I find your posts difficult to read - possibly just me :-)

  • sorry marz tried to put some in, thanks for your help, im sorry you had a rough time with it all, im glad you have got sorted in the end best wishes fingers crossed i will look back in a while and be more well and be able to have more energy with 1 year old and 4 year old much easier going to check the b12 again though as said thanks again my sister in law is on the b12s injections also


  • :-)

  • just to add i have just written a letter to my gp before my appointment iv arranged thursday explaining my concerns of latest blood tests information and overall health and what iwas discussed with the specialst with a blood test copy from liverpool womens unit from march 2012 showin better levels. i have also put that i feel im not gettng the support and medication i need to deal with this condition and if he is unable to help me with increasing my dose i want to be refered back to the specialst.

    no messing now iv had enough its getting silly especially when iv got some proof thank everyone you given me some drive to get this sorted see how i get on sick of being polite with it all fingers crossed


  • Hi Sara,

    Aim always polite with my GP BUT insistent. Why don't you remind your GP in your letter that the NICE guidelines are guidelines only and it is highly recommended that GP go on signs and symptoms -I would have thought your Ft4 being at the bottom of the range was more than a sign! frustrating isn't the word. Really feel for you.

    Stick to your guns -arm yourself up with Toft article, ask for your letter to be put on your medical record -this means they will have to reply to you formally. It's a shame we have to do these things but it is your life and one thing is for sure your GP is not the one living it! :)

  • thanks for your message waveylines yes i was polite but firm and put how i appreciated all his help on getting diagnosed but to the point. Your right this is my life there messing up and my children come first its not fair to them, im going to be a stubboen mule lol!. i also put in letter the impact it is having on my family and how impossible it is to look after a baby exhausted. at worst case i will change surgeries which is atually nearer supposed to be quite a good doctor that a relative uses and they have thyroid problem. Thanks again for all you support i feel much better and will soldier on i will mention about the letter and dr toft again if he is unhelpful it such a shame hes a nice bloke but there all textbook!


  • UPDATE went to see doc and agreed to up my dose 125mg as agreed levels had dropped(had been telling this for 4 months but never mind)and very helpful it helped writing a letter to get my point across and its on the system and historic blood tests to prove where i need to be thanks so much for all you support everyone


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