Hypothyroid meds not working

Hi I have been hypothyroid for 8 years now and the symptoms have never gone away. In fact they are worse than ever ie. exhaustion, pain and aching everywhere, itchy skin, etc. I've been on levothyroxine all this time and have asked various gp's at my surgery if I could switch to natural T3 thyroid meds. None of them will do this because my thyroid tests come back as normal and they won't do any more in depth blood tests. I keep being told I have fibromyalgia but I know this is all down to my thyroid. How do I get a good doctor who will listen? I'm in Manchester and willing to go private if necessary. Any advice would be welcome thanks.

36 Replies

  • Welcome sammilou, but sorry you're here...

    do you have your 'normal' blood test result (with ranges) for folk to help?

    You also need basic nutrients tested - we are often low in

    iron- ferritin, B12 & folate and Vitamin D - there are many others but this is a starter for 5!

    If you GP won't test vitamins it is well worth going private - or supplement all except low B12 which needs further investigation for pernicious anaemia or nerve damage first.

    J :D

  • I don't have my test results but will definitely get a copy of them from my doctor tomorrow and post them on here. Thanks.

  • 'They' will get used to you asking for a printout (NB receptionists can't say results over the phone).....

    First I said 'it was for my hospital appointment' (true)

    then 'for my osteopath' (true)

    then, 'I want to be a part of my health plan & work together' (well that's what I intend to say at tomorrow's appointment) - too true! (only if I remember and find/seize the slot...)

    good luck to us both! J :D

  • Hello, nerve damage; never heard of this before, can you tell me a bit more about the test please?

  • Where did it mention nerve damage ?

  • Sparerib, above: "Welcome sammilou, but sorry you're here...

    do you have your 'normal' blood test result (with ranges) for folk to help?

    You also need basic nutrients tested - we are often low in

    iron- ferritin, B12 & folate and Vitamin D - there are many others but this is a starter for 5!

    If you GP won't test vitamins it is well worth going private - or supplement all except low B12 which needs further investigation for pernicious anaemia or nerve damage first.""

  • Sorry I didn't go back far enough - just looked at the post above - apologies :-)

  • Hi Vrboska - long-term B12 deficiency can cause nerve damage - for more information and about testing you could look at the HU pernicious anaemia community - although there are quite a few people here who are members of both communities.

  • Thank you.

  • Welcome to the forum, Sammilou.

    Email louise.warvill@thyroiduk.org.uk for a list of NHS and private endos and private GPs in your area recommended by members. You may have to contact their offices to check whether or not they prescribe T3 or NDT. When you get the list you can post a question asking for information and personal recommendations but ask for replies to be sent via private messages.

    If you post a copy of your recent thyroid results with the lab ref ranges (the figures in brackets after your results) and say how much Levothyroxine you are taking members will advise whether you are optimally medicated as opposed to 'within range'. If you don't have them ask your practice manager or GP receptionist for a printout and post them in a new question.

    Try taking an antihistamine an hour before your Levothyroxine. If you have an allergy to one of the fillers this will relieve it and you can ask your pharmacist to dispense an alternative make. The 3 makes available in the UK are Actavis, Mercury Pharma and Wockhardt.

    Ask your GP to test ferritin, vitamin D, B12 and folate. They are often deficient/low in hypothyroid patients and this can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Post the results in a new question and members will advise whether you should supplement.

  • Thanks for that

    I'll be back with my test results tomorrow hopefully!

  • sammy, many people here have been in the same boat and many have either obtained natural thyroid from other countries or purchased T3 to add to the levothyroxine so I hope you don't have to put up with those symptoms for another 8 years. Someone posted this article a while ago. tiredthyroid.com/blog/2014/...

  • I also have a low thyroid and fibromyalgia. I went through extensive testing prior to my diagnosis. The symptoms are so similar but a process of elimination. I also have psoriatic arthritis and a degenerative disc in my lower back and neck. Don't give up, there is medication and natural ways to relieve symptoms. Mostly food elimination. Look for a doctor that specializes in your condition, your results will be amazing. Though there is no cure for fibromyalsia, there are ways to control the symptoms and pain. Good ouch!

  • You have had many good responses and this is a link which might interest you. It is by the Director of Fibromyalgia Research Foundation.



  • do you have copies of the tests your doctors say are "normal" get them complete with reference ranges

    Its possible all they have done is TSH which is totally inadequate especially if you have Central Hypothyroid

    what GPs fail to grasp is that




    Vit D3

    MUST all be tested and above halfway in their ranges if your body is to be able to utilise the levo

    Your tests might appear OK but your body is not and you may well be suffering a toxic effect of the levo

    This is why all their tests fail to show the real problem

    Theres plenty of research available ref the need for above 4 to be tested

    so go back to your GPS explain the above and ask for those 4 tests to be done

  • Several months ago I had the same problem. Saw Dr Peatfield, made tests including adrenal funcion which seemed to be marginally underactive. Dr Peatfield advised reduced Levotyroxine from 75 to 50 and added Nutri Adrenal and Nutri Thyrode supplements, 4 tablets of each daily. On the basis of adrenal under functioning I finally managed to get NHS GP referal to NHS endo who did all the tests and were impressed how my thyroid and cortisol are managed saying to continue with the therapy. They were of course reserved towards supplements Nutri Adrenal and Nutri Thyroide but said it's working for you. I feel better and function much better although I expected to be given active T3 rather than supplements. Does anyone else have these supplements?

  • Hi I have started on nutri thyroid complex and nutri thyroid concentrate, a couple of weeks into taking these I started on thyroid S the one from Thailand. the nutri thyroid concentrate says it's hormone free, but in the list itsays it contains bovine source from new Zealand.Not sure what this is.I just hope it doesn't class with thyroid meds if a hormone.

  • Thank you for your reply. Dr Peatfield explained that bovine source from New Zealand is desiccated beef thyroid from safe NZ sources. NHS doctors are very skeptical about it. I am not sure what did you mean ""it doesn't class with thyroid meds if a hormone"? In earlier posts about Nutri Adrenal and thyroid people expressed belief that there is no active hormone in either of those two supplements. I actually did go to private endo in hope to get an active T3 which is marginally low but ended up with Nutri supplements. I gave them a chance and do feel better still not knowing for sure what exactly they contain. I feel I have done as much as I could to help myself and any further search would bring me more stress and expense. I decided to trust Dr Peatfield. The whole medication issue is really not known in depth and doctors and people have divided opinions on this. I would like to exchange other people experiences with Nutri Adrenal and Thyroid and happy to share new info on this.

  • I think caroash meant clash

  • Yes I had them and they worked for me for 2 years until my old GP retired and my new GP stopped me a year ago due to supressed TSH. I am now seeing an endo and he tried me on T3 and T4 which still didn't work. Slowly recovering on Armour now, starting increased dose today, hooray! I am still taking Nutri Adrenal.

  • Hi Sammilou, this could have been written by me, symptoms just the same, plus I know I've got low B12, possible pernicious anaemia too. I keep asking my GP for a referral back to the endocrinologist, because I feel the Levothyroxine isn't working as well as it used to. All he does is another blood test, and says everything is in the normal range!!! Grrr!

    Waiting to get another blood test done, having been on antibiotics for a while. Am going to try and get full info this time and post on here. Hope you can find a good endo in Manchester, I think Thyroid UK have a list. Good luck. MariLiz

  • Hi Sammilou. I am in the same position as you and am also in Manchester. I am looking for a private doctor who can help me get myself better. Perhaps we can join forces? :)

  • Hi Karen that would be great. I'm determined to get the right tests and treatment and if I find anything out I'll let you know x

  • Just a point about getting your vitamins and minerals tested... You don't need to pay a private doctor to get blood tests done.


    I've used Genova Diagnostics UK and Blue Horizon Medicals. Please note that Blue Horizon have several different websites for different purposes.

    For Genova I always use their automated (phone) kit ordering line to order tests, rather than email or online ordering. When I am asked to give a practitioner I say "Thyroid UK".

    For Blue Horizon, the first time I used them, I was phoned and asked to provide some details about why I wanted the testing (I said it was because I wanted to monitor my general health). I've never been asked again since.

  • HI I am in a similar position but live in Devon. I, too, looking for a private/NHS endo who can help me to feel better than I do now.

  • Jeanp17 - Get your GP to refer you to Derriford Endo - they're not closed to the idea of T3 like Wonford are.

  • Mickstability- thanks for your info - is there a particular Endo at Derriford to see about T3 on the NHS?

  • I'm not going to name anyone as I don't want fall foul of the forum's rules. I'll PM you.

  • Just a thought, are you taking the medication on an empty stomach at least an hour before food and drink? Keeping supplements and any other medication at least 4 hours away?

    I'm in the same boat too, but didn't feel any better until I took iron, folate, inject vitamin B12 and managed to get my Vit D up by taking supplements. All were too low despite a really healthy diet. Just because blood test say you're "normal" doesn't mean you have gotten rid of the symptoms. The blood tests are flawed anyway.

    I was diagnosed with fibromyalgia in 1999, I have found taking magnesium citrate helps my body pain. I also take at least 1,000 MCG of Vitamin C a day. I tested for low cortisol, I know this is keeping me ill, worth considering an adrenal stress test from Genova? You can't rely on your GP to get you well with this, do as much research as you can.

    Have you taken your temperatures early in the morning before you get up? If they are well below 37degs there's a good chance you are still hypo. Do it for a week, and write down the results for your doctor.

  • hi, I have been on Nutri Adrenal and Nutri Thyroid also after seeing Dr P. I don't take Levothyroxine anymore, just take these - 5 of NA and 3 of NT a day. I don't really understand why people are so concerned if it has hormone or hormone_free. I know it's more natural than levothyroxine. I think most people will feel better on them.

  • If people have small thyroids, half a thyroid, a thyroid which has been partially or completely destroyed by antibodies, or perhaps their thyroid has been removed, then thyroid hormone is absolutely essential in order to stay alive. It isn't an optional extra.

    Nutri-Thyroid may help some people. But there will be plenty of others for whom it won't do much at all.

  • I have been talking Nutri Thyroid for the last month with no effect.

  • Hi Sammilou, this very much sounds like an allergy of some kind and may have been coming on over a period of time. It certainly sounds like this is what's happened. Check the ingredients on the meds packet or slip.

    I've been taking medication recently (not thyroid meds) and I was starting to have issues with itching, sneezing and inflammation in general. I'm lactose sensitive and the medication contained lactose monosaturate. Rather than making me feel better, the medication was having the reverse affect (effect? - no idea!). I believe I am particularly sensitive at the moment because my adrenals are low. I'm working on getting these back to normal and expect to be less sensitive to lots of things at some point.

    This is often a vicious circle, as being sensitive and inflamed causes a strain on already under-performing adrenals. It's necessary to break this circle and get back to good adrenal health to then, in my experience, be able to tolerate some of the things that you would normally be sensitive to. This is what adrenals are for :-)

  • I have had hypothyroidism also for about 8 years and I have slowly taken myself off Thyroxine which was absolutely no help plus caused my hair to fall out more than it should . I now am on very effective Transfactors 4 Immune tablets from 4 life. Also special Thyroid liquid supplement my from my homeopathic practitioner, plus strong Omega 6 and the most effective are The Frequency App patches specially designed to send energy frequencies to my thyroid which one has to change every 3

    Days - they are amazing - they give

    me energy plus the immune tablets. My hair looks and feels good again. I still struggle to lose weight but I exercise at least an hour a day just doing some form of cardio. My sister has Fibromyalgia and it sounds like you have it also as my body does not hurt with Hypothyroidism. She has come off all red meat and tried to be a full vegetarian plus she swims 4 days a week and she has not had an attacking for ages.

You may also like...