Advice needed

Hi I was refered to a rheumatologist because I had been suffering from bone pain and burning in my feet, alongside some other bone pain and other symptoms such as extreme tiredness and lack of libido, putting on weight, memory loss etc...have been struggling for the last 2 years like this with trips back and forth to the dr's until someone finally referred me.

The rheumatologist said the x rays showed that I had minor arthritis in my feet but that the burning pain was down to peripheral-neuropathy and that I have to take amitriptyline, he also said that he thinks I have chronic fatigue syndrome.

I am at the moment having a very difficult time getting anyone to listen to me or in fact treat me correctly.

The dr wrote to me and said we need to see you, I went down and she said "how can we help you", I explained that I had been to see the rheumatologist and he said he thinks I have peripheral-neuropathy and that he wants me t take amitriptyline, I stated that I didn't want to take a tablet like this until I had tests to determine if I actually have this condition, she asked why I didn't want to take the tablet, and rightly so I stated that if I have peripheral-neuropathy, I should have tests

to make sure this is the correct diagnosis first, and that then this condition will have to be monitored.

I told her I have spent 2 years trying to get someone to listen to me about the pain and exhaustion I feel and that this is no hurting my marriage and my family, because I am not the same person I was 2 years ago, I also find it hard because no one can see my pain, this makes me feel like people think I am a hypochondriac.

Anyway I was reading up on burning feet and it said this could be from hypothyroidism so I asked the dr to do a test as I felt that many of my symptoms fitted with that, they did the test and that has come back as normal.

It seems I am now back to square one, I am so depressed because my dr's just seem to pluck any illness out of the air and say I have it, for instance I am told I have chronic fatigue syndrome, they just send me away, not even with any advice, they say I have peripheral-neuropathy, but have done no tests to confirm this and I am left in extreme pain and very depressed because I feel that because I don't have physical symptoms (apart from the weight gain) I am not being taken seriously.

Now my thyroid has come back as what they class as normal I am at a loss as to how I deal with the issues I have.

Ha anyone found it really difficult to get their dr's to take them seriously, or even treat them accordingly or are these so called "invisible" illnesses, (rubbish) taken seriously.

I am 44, my youngest child is 12, I feel like I am much older, and am now at another dead end.

I was given some advice on the thyroid community which stated that just because TSH test shows normal it doesn't mean I am, and to keep pushing the dr's, but this is not how my dr's work, and because of the lack of things for the dr to see I feel like I am banging my already hurting head against a wall.

I would appreciate some advice please.

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16 Replies

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  • Whatnwere your thyroid results. Did you get copy?

  • yes I got a copy, here is the post I replied with

    Right here goes not really sure what they all mean or what is relevant but will post up what i have.

    Serum TSH level 1.79 (0.35-4.50)

    all other results are to do with bloods and bones a huge list which varies but are within limits even if some are on the upper or lower edge, if that makes sense.

    only other ones which were highlighted up was the mean corpusc haemoglobin 32.8 (27-32.0)

    and HbA1c level 34 (48-59) these said within acceptable limits

    i cant see vitamin d, no B 12 either

    serum ferritin 26 ( 22-332)

    So it looks like they class me as normal :-(

  • Hi again, not sure about haemoglobin but your Ferretin is low. Like mine in last test. While in normal, Endo said low enough to cause fatigue. My Vit d levels now 77 which is mid range - he said optimal and to keep up whatever supplements I was on. It was 34 a year ago.

    I'm now taking iron supplements but suspect will take time to kick in.

    I have Hashi's for sure as antibody test was done.

    Cortisol levels ok but X-ray being doubled checked for changes since one last year and if ok he'll tweak thyroid meds, maybe a natural one.

    I feel he's a very good committed Endo but wary of a miracle too...

    Wishing you well. Keep looking for answers. Maybe post all results for others here who Are like experts. (maybe you already did).

  • my vit D was 62 a few weeks ago, was 12 a few months ago, someone else said my ferritin was low, but DR says its ok as within range.

    I have just got some vitamin b complex tablets on the advise of someone on here, I am hoping that they do some good.

    My DR only does tsh test, didn't do antibody test, and now only interested in high cholesterol level.

    When will they realise that treating each individual symptom is silly when they all form part of a more complex thing.

    We know when our bodies are out of kilter, well I do and I will keep fighting.

    I also wish you the best of luck, it seems you are a few steps more forward than I am at the moment.x

  • Raised cholesterol is a sign of LOW thyroid hormones. You need the FT4 and the FT3 tested and the anti-bodies. You need to tell your Doc you need to rule out central hypothyroidism - when the pituitary is not able to stimulate the thyroid into working - if it's not Primary Hypothyroidism that is.

    B12 deficiency is similar to being Hypo - many symptoms overlap. It sounds to me as if you are suffering with this and NOT peripheral neuropathy....if low B12 is left untreated many neurological symptoms appear.

    b12deficiency.info/signs-an...

    A B12 result below 500 will cause neurological issues. Once on the link scroll down for all the signs and symptoms.... Sadly many Docs will declare you normal when your result is at the bottom of the range - around 200. Sadly this is causing so many people illness tht could be easily rectified....

    Hope you find this useful...

  • Thanks for your reply, yes after researching I have found out these things, I have recently started taking vitamin B compound to see if this stops the burning feet, as this compound has all the B vitamins which many are deficient in.

    My DR's are rubbish and don't seem to have recognised this fact, would rather I kept constantly visiting them and being made to feel as if I am inventing things, I have spent a year with feet that burn so bad, and I couldn't have made it more clear to the DR's.

    After reading the thyroid forum I was told that the TSH test is not enough and that I should have the t3 and t4 and antibodies test, I have made an appointment for next week and will ask for these, but do not hold out much hope as I am sure they will refer back to the TSH test and state that id anything was wrong it would show on that.

    Because I am now at my witts end I have decided to treat myself in the hope I can feel a lot better (only started the B compound yesterday) yesterday I felt so ill and tired I thought I was going to collapse.

    I also read that cholesterol is linked to thyroid but again I doubt my DR will take note, but I will try and will report back on here of what happens.

  • There will NOT be enough B12 in the B Complex. You need to know your B12 result - maybe you need 1000mcg or 5000mcg. Best to be tested first.

    Have you read up on the differences between Central and Primary Hypothyroidism - it will help you to explain your case eloquently.... :-)

  • Oh was not clued up on that ;-( I thought there would be enough of the B 12 as it says 100% of RDA, but yes I take your point about getting tested first, I suppose I was getting desperate, would take anything to get back on track ;-)

    I will now look up the differences as no I do not know them, thank you (off to swat right now)x

  • Have just looked at your earlier post on Thyroid UK. It was suggested you took some Iron - suggested by Galathea. The B complex will not improve your Ferritin levels. Having tests done privately - as was also suggested - will be money well spent if it improves your health - and your marriage.

  • I am going to start on iron today, not sure about the private tests yet as bit poor at moment and want to see how it goes at the DR's next week, then it may come into play. thanks for the advice, people on here have been more help than the trained professionals ;-)

  • Take a peep at my edited Profile by clicking on my name - then you will realise - like many - I have travelled a bumpy road. Now finding GOOD health at 69 :-)

  • Just looked on the B12 page, made for some interesting reading, and made me quite angry because I have so many of the symptoms, and have been getting fed up with my eyesight which has been blurry for ages! went to the optician who said my prescription had not changed so have been wearing my reading glasses all the time to ease things.

    I also though it was interesting that they state that you are supposed to fast before the folate and ferritin tests, this is not told to you is it!!

    I have not got round to reading your posts yet but will today to see how the "bumpy" road treated you. am so pleased you got it sorted and now feel much better.

  • No - not my posts - I would not expect you to read those. It's just a small piece some of us write on the Profile - it prevents having to repeat yourself as people can refer to it if they need to know anything.

    Glad you found the B12 link helpful - thank you for letting me know !

  • ha ha I have been slowly rooting through your posts oops, will look for it. ;-)

  • Found it ;-) you have certainly been through some bad times, thank you so much for replying to me, it is a great help and I can now go armed to the appointment next week with some useful information for the DR.....not sure they will like being told facts...that they should already know though.x

  • only a little ahead and it's my second Endo. Last one though my 'extra' symptoms were not related.

    My GP signed off gen results when within range but Endo recognised that low within range still an issue. Very difficult to get them listening properly without feeling like a hypochondriac. My GP good though. Now v interested in how Endo treats me as last one just discharged me back. At least she's open. Knows me and family long time. We can only live in hope!

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