Dazed & Confused

This is my first personal post to the forum. Like many who have posted before me, there is so much to try impart and so many questions to ask, as this failing Thyroid lark is so complicated, where do I start? Thought it wise to break it down into chunks, so that my foggy soaked brain can disseminate the information bit by bit.

My problems started in 1989 after taking an anti-malaria drug. Years of many joint problems and illness ensued. It might not be linked in any way to my Thyroid problems, but this is my timeline start point for when I started to feel unwell and not myself. Many years later I had a blood infection from an injury and ended hardly being able to walk for years as my immune system attached my body, I was diagnosed with a Seronegative Spodaloaropathy, (Reactive Arthritis), at the time but the Rheumatologist s was not sure. I have ached and had stiffness and swelling ever since.

Many years ago I went to a doctor as I suspected I might have a thyroid problem (weight gain, overheating, dryish skin, and my late father had suffered Thyroid problems). At that time there was no internet or wonderful forums such as this, just the library, so when the TSH test came back negative and the GP said all was OK, I did not pursue it any further.

As life has progressed it has thrown up more many more of the classic symptoms of thyroid problems, but being busy with a family, work and having my owned business and lack of information, I have just carried on with things, but enough is enough.

I have been to my GP, (I took a copy of my illness timeline and my symptoms to her and listed your website link on the bottom, to which she now refers to when I have an appointment). She did take the time to list to me and ran a gamut of tests for many things, many of which that I doubted I would have. She ran a series of blood tests, one of which was for TPO, thyroid antibodies, which came back very high. I had very low B12 level, (which after reading this forum I asked my GP to test for). She says that the other Vitamins etc. are OK, but I suspect after reading various posts on this forum they might not be at optimum level to deal with my high antibodies. She stated that she cannot treat antibodies, and the labs will not test for T3 and T4 even if she requests it and that my TSH was within range, (although she admitted that if my T3 and T4 aren’t functioning this might not show in my TSH results). That one day my thyroid will fail and I must keep an eye on it. She has referred me to an Endo in Bristol, but I have to wait until July and I suspect I might come up against the same thyroid brick wall! She says that I am also hypermobile, and this could be the cause of some of my symptoms.

I now need to get a private test for my bloods to find out my T3 & T4. I have posted the results from my GPs blood tests and the ranges so that at least I can start on getting my vitamins right etc. I am taking 1000 ug of sublingual B12 and 200 ug of selenium, (again after advice on this forum that this might help antibodies).

Through my husband’s job I have private BUPA healthcare. Has anyone had a better experience of going private and their views on treating antibodies?

I just don’t want to go on like this anymore, I am a strong motivated person, but this week I have started to experience the most terrible feelings on waking in the night of feeling so unwell as if I am so unwell I feel like I am dying and feeling incredibly low. When I wake in the morning I am my normal self, (symptoms aside). The B12 helped me at first and I felt much better, and at least it stopped the nightmares and terrors I had been experiencing. But now when I am outside in the light my left eye has started to waters continually. I think I might be swinging from hypo to hyper? Will NDT help or another form of medication?

What astounds me is that if you went to your GP with just a few of the symptoms we experience they would try and find a solution, a way to help. So many adverts in the press, TV and on medical programmes encourage you to go your GP if you continue to feel unwell or experience certain symptoms. And what happens when we do so, we are turned away, I cannot think of many other conditions that would be ignored and brushed aside like this, it is criminal?

I would like add that if I had not found this forum and all the links, and for all the hard work you obviously contribute, I do not know what I would have done. It is a total lifeline, I just wish there could be a thyroid revolution to stop this injustice continuing for us all. Thank You…

Test Result Range

Thyroid Peroxidase AB conc - 1000 IU/mL (<100.00 IU/mL)

Serum B12 – 166 pg/mL (180.00 – 900 pg/mL)

Serum Ferritin – 108 ug/L (29.00 – 470.00ug/L)

Serum Folate – 6.4 ug/L (4.40 – 20.00ug/L)

Serum TSH Level - 1.2 mU/L (0.27 – 4.2mU/L)

(There were many blood from kidney function, to blood cells to my liver but the GP stated they were within range). There is no result under any guise for Vitamin D available, not tested)?

11 Replies

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  • Hi Hezziet, if your vitamin D level is really low, that can also cause musculoskeletal pain problems. You should get that tested.

  • Welcome to the forum, Hezziet.

    Your TSH is unequivocally normal but that doesn't mean FT4 and FT3 are as TSH only testing completely misses a diagnosis of secondary hypothyroidism. I think it would be very useful to get private thyroid tests from Blue Horizon or Genova via thyroiduk.org.uk/tuk/testin... You can also order vitamin D testing from City Assays. Post your results in a new question with the ref ranges and members will advise.

    Your B12 is deficient and may be causing some neuropathic symptoms. 1,000mcg is unikely to be helpful and you may need loading injections to restore your B12 before neuropathy become irreversible. It may be necessary to investigate pernicious anaemia before B12 injections are started. Click on My Communities and select +Browse and type PAS into the search bar and ask their advice on B12 deficiency, pernicious anaemia and whether you should continue supplementing.

    Ferritin and folate are sub optimal. Half way through range is optimal.

    Email louise.warvill@thyroiduk.org.uk for a list of NHS and private endos recommended by members. You can post a doctor's name to ask for feedback but ask for replies via private messages.

    thyroiduk.org.uk/tuk/diagno...

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

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

  • Over on the PAS forum, at least some of the members shout that there is no difference between PA and B12 deficiency - simply that classic PA has an aetiology. At that low a level, injections should have been given.

    Please post on PAS for B12 - there are some very good people there.

    Please get your actual numeric results and reference ranges. You are entitled to them:

    nhs.uk/chq/pages/1309.aspx?...

    I have little doubt that a number of values will be at one end or other of the range (for those that should be near the middle). Your ferritin level is OK - but ferritin can have an OK value in someone who nevertheless has iron-deficiency anaemia.

    My view is that you really need FT4 and FT3 tested. It is common for people with autoimmune thyroid disease to see FT4 reducing and FT3 actually increasing over quite a long period. (As if FT3 rises to compensate for low FT4.) Then, one day, suddenly FT3 drops as well and precipitates the severe hypothyroidism. But all along, the TSH has also remained fairly OK.

  • The eye watering all the time could be a concern.Have you been tested for glaucoma.My optometrist found mine.I had an aunt who lost an eye through ignoring it.I have had laser treatment on mine.2 minute holes drilled in eyes.Felt like sand going in my eye.That was over 5 years ago.No problems since.Also had new lens put in.Marvellous what they can do these days.Good luck hope you start feeling better soon.We all seem to be the same.

  • Wow your B12 is very low, that can cause many of the symptoms you are feeling. Your doctor should prescribe b12 shots with your results. Ask for methylcobalamin as your body doesn't need to convert it to its active form (and you may have a MTHFR gene polymorphism that makes it difficult to convert anyway) take a good b complex when having your shots (I use cytoplan but any company that uses methyl versions of b vits in with no fillers is good)

    Your doctor should test for vit d, for some reason even when requested labs don't test it. Just keep going back until they do test it.

    The labs are more likely to test Ft3 and FT4 when central hypothyroidism is written on the blood script.

    Cut out dairy and gluten 100% this generally helps bring antibodies down. I had to cut out nightshades as well (I went Autoimmune Protocol, but it's very restrictive and best to work up to in stages if you decide to)

    Also get a 24hr adrenal saliva test (genova and blue horizon do them) as high cortisol can suppress TSH. Adrenals need to be functioning before you can tolerate any thyroid meds. This is really important. I ended up bedridden after 4 months on Levo thanks to damaged adrenals.

  • Hi Hezziet, so very sorry to hear how unwell you are feeling. With a level of 166 for B12 you definitely need to have loading dose injections, that is six injections over a two week period. Usually, they wait eight weeks and re-test your B12 to see how much you've retained. Standard treatment then seems to be one injection every three months from then onward. Your ferritin and folate are too low to be helping you use any B12 you are given/or take, so they need to be increased too. Also take a good quality multi-vitamin, maybe a B complex. As you have quite high antibodies it sounds as though you have Hashimotos thyroiditis, this means you may fluctuate between hypothyroid and hyperthyroid. Some doctors seem to think it's OK to leave us untreated, until the thyroid eventually packs up completely! That isn't right, you need to get some help/medication. A lot of people on here have found going gluten free is helpful in reducing antibodies. I have low B12 and Hypothyroid,plus fibromyalgia (although the lady at the chiropractor's who does massage thinks I might have hypermobility). The pain, both physical , and mental, caused by all these things, plus the lack of interest by the medical profession, mean it's a constant battle to get help!

    I wish you well, and sincerely hope you get the help you need. Best wishes MariLiz

  • Many thanks for your reply and advice.

    Interesting that you might be hyper mobile too!

    I have found a link on TUK site to a B12 site, and they reiterate what you have suggested. You must take a B complex vitamin with other B Vits for it for work. Noted on this link more of the symptoms that I wrote down for my GP. I have been taking 1000 ug of sublingual Solgar B12 and my B12 did go up to the 200s (still low), when my GP retested me, and I felt better for a while, but have crashed again since. Probably not being absorbed etc as I am low on other vits.

    It also mentioned Folate and Ferritin, which I suspected after reading forum posts might be a bit low despite my GP saying they were in range, seems to be a stock answer by GPs. So e

    I try not to eat too much gluten, I will do some more research about gluten free and antibodies.

    Another reply from a member who suffers similar autoimmune issues to myself has suggested if might be PAS, my adrenals, and after further reading I can identify with this too.

    I have suspected for years that there is something going on with my autoimmune system, and how my body seems to attack itself.

    Think the next step is going back to see my GP or another at the practice an about B12, Vit D and adrenals, (my first Endo appointment is not until July). When I went to my GP I went armed with lots of information and questions and I felt that I was leading the investigations and theories..

    Also going to get blood tests privately for T3 & T4... its a start...

    As you say a battle, but at least we have some allies in all the members on this forum... thank you once again.

  • Hope you find the GP can help you with more testing, if you get a printout of your test results you can post them on here for more advice. GP's will often say levels are normal when they're far from normal. Everyone on here will tell you levels need to be on the high side for our absorption to be the best it can be..

    My body seems to be in full on attack mode on itself, and is so often the case, where you have one autoimmune condition, you end up with more.

    Wishing you well MariLiz

  • Hezziet,

    I'm hypermobile too. Can do the splits all three ways and tie myself in knots. It looks impressive at the gym but causes lots of aches and pains if I don't stretch out everyday by doing my yoga practice.

    Flower007

  • Hi ..Im not that mobile! But at 56 without any warm I can do a forward bend and put my hands flat on the floor. .think nothing of it until ny friends, some much younger than me try it and cant even get past their knees. Love downward dog..Haven't gone back to my yoga yet after my last illness which efected my legs..also get embarrassingly hot and sweaty..when no one else is.. I ache whatever I do . but all the Vits I am taking are helping.

  • You must return Hezziet, just wear loose clothing.

    Yoga releases tension from body and mind allowing control of all that "monkey chatter".

    Meditation has taught me how to slow my heart rate and enable that internal connection.

    When life is difficult yoga is my guide, my let out and above all my Prozac. Lol.

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