A long death ?

Where to start..I was diagnosed as hypo 15yrs ago after the birth of my 2nd daughter after being borderline for years. I've never felt well on Levo but I have a gp who only looks at tsh.

It increased over the years from 25mcg to 125 and I still feel like pants. Over the years I've had my gallbladder removed (12yrs) I have had to have vit b12 jabs every 12 weeks, I have been diagnosed with fibromyalgia (2yrs)then in June last year I caught a throat infection which led to the last 8 months catching one infection after another. I have lost count of the antibiotics I've had (unwillingly). Urine, breast, throat, chest! Costacondritis, pluracy. I'm sure you get the picture. Then vit d levels too low so I'm taking supplements, then folate too low so supliment that. Chest X-ray has come back normal but a liver scan from raised levels shows fatty liver. I feel desperate, I feel so unwell. Had a visit to the Gp yesterday to ask for them to find out what's going on. Nothing .. I'm just unlucky. Maybe that's the case but with no support from the Gp it's time for me to help myself. I can't and won't continue in this downward spiral. My tsh is just over 1 at the latest blood test which the Gp is happy with. I need a full range of blood tests and a sympathetic endo in South Wales but I will travel. Can any one suggest bloods or endo?

It's time to take control before I lose the energy to fight anymore

28 Replies

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  • I see you joined in 2014 - but it sounds as if you have been too unwell to keep up with all the good information here on this forum. We really need to see your latest results with ranges - you can ask for copies from your GP as you are legally entitled to them.

    Are you able to have tests done privately - Home Testing Kits can be sent to your home - Thyroid Profile 11 is very popular and used by many. The best way of finding out what is really going on. I don't expect you have had the FT3 or antibodies checked.

    thyroiduk.org.uk/tuk/testin...

    Also Medichecks have an offer on at present.

    Stick with reading on the forum and asking questions and people here will have you well in not time :-)

    How much VitD are you taking ? - also folate ? Any other supplements/medications ?

    I am thinking Hashimotos - LOW FT3 - and B12. But hey I am not a Doc just a Hashi's gal with a B12 issue. Happy to help :-)

  • Yes I get very overwhelmed . I've been given 800 but after a bit of research soon realised that this was nowhere near enough so I'm taking 5000 for 3 months, I also take selenium and magnesium and k2 to support the vit d and thyroid function. I'm sorry if I sounded dramatic just at the end of my tether.

  • You really need copies of your test results with ranges so people can comment - otherwise we are shooting in the dark :-)

    Fibro is often connected to LOW T3 . I am speaking from experience as I was diagnosed with Fibro back in 2000 by a consultant Rheumatologist. In 2005 I was diagnosed with Hashimotos . I am now 70 enjoying good health - with just loads of supplements and thyroid hormone - having followed the advice of others on websites/here/books and so on ....

    These are the Tests you need - TSH - FT4 - FT3 - Anti-TPO and Anti- Tg - the last two are thyroid anti-bodies. ALSO you will need FERRITIN and B!2 tested and possibly treated. You say your Folate is low - so it is more than likely your B12 will be too. When B12 is under 500 it can become a neurological condition and damage can become permanent if left untreated.

    You have started to take some steps to wellness - so now continue your journey. Have you clicked onto the link I posted for you above about Private Testing ??

  • I was just reading it, I'm being treated for b12 ( about 5yrs now) and my latest blood test showed low folate (3) so I'm now supplementing that too.

    I had a copy of my latest blood results, all I have to do now is remember where I've put them lol.

    It's great to know this can be turned around, I'm 45 feeling like 105, literally begging the Gp for help .

    Time to take it into my own hands

  • You are doing the right thing. I have been living in Crete since 2004 so have had to organise myself - albeit we do have more freedom here 😊

    Apologies - I missed the bit about your B12. Folate and B12 work together in the body so you need good levels. Could it be you need B12 jabs more often. I do mine weekly - many do. You could take B12 supps in between to keep topped up ...

  • Have you tried all the recommended lifestyle approaches, e.g. 100% Gluten free diet, removing other food sensitivities, nutritious food, supplements to combat nutrient deficiencies, probiotics, fresh air and exercise, de-stressing etc?

    Gluten sensitivity is associated with gallbladder disease as well as Hashimoto's:

    thepaleomom.com/the-link-be...

    The Thyroid Secret series is on now and has lots of good info on self help:

    thethyroidsecret.com/traile...

  • Thank you for the link about the gall bladder connection. I had mine removed way back - NO stones - just rancid ! Surgeons words not mine 😊 Am now gluten free - probably 30 years too late !!

  • Hi, I've done the gluten free thing but made no difference at all for me, I do take probiotics ( since a stomach bug at xmas) and I'm a huge believer in alternative therapies. I do try and keep stress free but in this crazy world it's a challenge ! Lol thanks for your advice

  • Shame you didn't uncover gluten as that's a biggie. It is still possible that you have a number of intolerances which mask one another. The Paleo Autoimmune protocol is quite a challenging regime which cuts out the most problematic foods. If you were up for trying it, it may help reveal whether any foods are a problem for you, and is easier than a full elimination diet:

    thepaleomom.com/start-here/...

    Good luck, hope you find some answers.

  • First thing to do if you can afford it is to get a blood test and Medichecks are doing a special offer. I think that would be a good start as GP wont do all.

    I believe they are home tests.

    thyroiduk.org.uk/tuk/index....

    Put them on a new post for comments. You can get well by yourself but it takes a little time but you can do it. :)

  • Thank you , I'm going to get them booked in . The Gp fully admitted to me even if I had private bloods done he's not sure he could interpreted them. I just have to do something to move forward.

  • Many of us on this forum, who haven't improved under a doctor or endocrinologist's care have succeeded with the help of members. Personal experience counts for a lot and the fact that nowadays Endocrinologists are restricted to what they can prescribe many members who consult them may remain unwell unless levothyroxine, when increased to an optimum for that patient who then feels well.

    You can have your results interpreted by members and at least your GP is honest so you can advise him the next step to take after comments from members :)

  • Thank you so much

    I'm in tears reading these replies, i hate that I'm so desperate and low.

    Time to start saving fir these tests , without a doubt !❤

  • You're experience is not unusual and I can fully understand. However, I will give you a link and you can see how many clinical symptoms there are and you will also know more than GP. You will be surprised how many symptoms there are and they can all be eliminated by an optimum dose of thyroid hormones.

    thyroiduk.org.uk/tuk/about_...

    I think having some T3 added to your T4 (of T3 only) will be helpful as you've been ill such a long time. I doubt your GP will prescribe as its now on the forbidden list in the UK and I do not understand why as it is the only Active hormone required in all of our receptor cells. T4 (levo) has to convert to T3 and some of us have a defective gene that will not convert it to T3 so we need to have T3.

    Also because Endos and doctors are so poorly trained in these 'modern' times (I think UK has gone backwards actually in treating/diagnosing) we have to 'do it ourselves'.

    The following links are by a doctor who was also an Adviser to TUK before his untimely death. He would never prescribe levothyroxine, only NDT or T3 for his resistant patients so he resigned from his Association so that he could treat patients without being hauled up before them because he treated patients and not 'blood tests'. He was also a scientist.

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

    :)

  • littlewitch

    do you cook with aluminium or non stick coated cookware or foil or use things like electric steamer,george foreman grill,slow cooker etc

    they all contain aluminium and non stick is flouride both damage the thyroid and your whole body especially immune system

    use only stainless steel ,cast iron or glass cookware

    check with your water supplier that they do not use alum or aluminium salts or flouride in their treatment works

  • You have to change your diet before anything else. It's made all the difference to me. As well as this forum there is lots of good advice on Dr. Brad Shook Facebook page and Web site. Very comprehensive videos etc. But diet always comes first when taking back control of our health. Good luck 😊

  • I know the endocrine facilities in Wrexham NHS are very good. May be you could get a referral -otherwise the Yale hospital in Wrexham may draw on the same NHS specialists.

    You have been so sick - obviously the NHS has been trying to sort out the various conditions you have - the fatty liver might indicate you have a cholesterol problem. Your diet may be too high

    in fats. I found my cholesterol went down after cutting out cheese. I love cheese, but it doesn't like me. I was eating over a pound of cheese a week including brie, edam, gouda, cottage cheese

    cheddar, double Gloucester, apricot stilton. Full cream milk, evaporated milk, cream, sweets such as caramel, can add to increasing your cholesterol. If you smoke, this can affect your cholesterol.

    If you log onto the nutritionist-resources.org.uk you will find information on cholesterol foods.

    Having logged onto several cardiac surgeons websites including GundryMD, he recommends

    removing soya, wheat products, and using berries such as blueberries cherries,blackcurrants

    which contain polyphenols which increase metabolism, and help your energy metabolism.

    Lectins are meant to retard energy levels, so are best avoided.

    Wikipaedia is a ready source of information on cholesterol and polyphenols. The cardiac killer

    video may be of interest explaining how statins create more problems than cure. Other

    foods can lead to cholesterol food blocking your organs and blood vessels.

    May be you have a hospital nutritionist who can give information but usually this takes weeks and

    months to get information. Hope you get the help you need. Take care.

  • Hi, thanks for the reply. Wrexham may be an option. No problem at all with my cholesterol. No aluminium pans either as I have an induction hob so only stainless steel work .. or cast iron which I find to heavy. I love berries so that will be no hardship. Thanks again

  • Yale private medical facilities are based in Wrexham as well as Wrexham Maolor hospital. The berries seem to be helping my metabolism!

  • you need to demand a referral to the best endo in the country who resides in Cardiff university hospital ..only NHS and it will be a wait but its worth it

    meanwhile get copies of all the blood tests that have been done

    start taking a really good probiotic like Bio Kalm 3 times a day fast

  • I look into them, I'm taking a probiotic but just something I picked up off the shelf . Thank you

  • my daughter did a lot of research on probiotics and found bio kalm is 2nd best probiotic on the market the very best one is extremely expensive amazon.co.uk is a good source of good quality supplements like jarrows or solgar too

  • Sorry to pop up reallyfedup123 - but please could you PM me with the name of " the best endo in the country.....Cardiff University Hospital ". ?

    Thank you.

  • I asked ..and got refused as he's out of county and he has no reason to but he will write me a private referral. Grrrr !

  • Well ladies I've ordered my blood test with medi checks and my little box arrived today. I feel guilty spending so much money on myself as we're on a tight budget but also now it has to be done. I had a lovely Pm suggesting an endo in Cardiff ( I'm SWANSEA) and my Gp refused at the moment as it's out of area and we have two endos in our area ( both useless) so unless I have new evidence I'm stumped there.

    So fingers crossed these tests will show what's going on and it gives me a way forward and out of this vicious circle of exhaustion, frustration and pain.

    I have got to do a few more tests for the Gp as I had raised crp then a positive ana test so maybe pointing towards an inflammatory joint problem.?

    All I know is every blood test that I'm sent for shows something else but I'm just unlucky .. there's nothing wrong

    Yeah right ! My body is doing everything to show you it's not coping but you keep dismissing it .

    Ok time to make my way to the hospital and fill my little box 😀

  • Do post your results in a NEW post - as it will get missed if you continue with this one. You need lots of people to see the results of your new tests and to comment :-) I will be looking out for them !!

  • Hi, I've posted them on a new post, if possible could you take a look ? Thank you for all your advice.

  • Just to keep you all updated I sent the bloods off and I've had my results back .

    Ive posted them up on a new post

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