Help Needed with private blood tests- Desparate!

Ok, only my second post and I'm afraid it's going to be an epic!

I have been taking levothyroxine for approximately 4 years and my symptoms seem to have been gradually increasing. I take 125mg daily (at night).

In the last 6 months I have been back to my doctors on several occasions telling them that I am suffering from at least 15 headaches a month - 5 of these being full blown migraines, occasional dizziness, toe nails thickening and tinged yellow,occasional numbness of tongue and complete fatigue. They have endeavoured to get blood tests done for t3 t4 iron etc, but on each occasion the lab has not carried out their request. Having done some research myself, I take daily supplements of zinc, vit b12, iron and vit d3. In addition to this, having monitored my cycle, I believe I am peri menopausal and have an estrogen dominance which I think causes my migraines mid cycle. I am also convinced that levothyroxine is not the correct medication for me.

I am a full time mum to a 10 year old with learning difficulties, with a husband who lives and works overseas and therefore I cannot afford to keep being ill - quite simply I have reached the end of my tether!!!!!

My surgery has said they will look at any private blood test results, so that is the route I am now headed.

I just need to know which tests I should have.

I have made a New Years resolution to finally sort out my Ill health - sick of not feeling well.

Any help would be very much appreciated.

6 Replies

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  • Hi Pennybain

    Your symptoms sound very similar to mine! i would have thought as a minimum you would get your TSH and FT4 tested through your GP. My last GP in Somerset used to get pretty much everything i asked for tested such as ferritin, B12, D3, FT3 although i do read through this site this is not the case everywhere and i am about to find out as we have moved to another area.

    Have you considered trying to find a different GP as in my non medically trained opinion the one you are currently with is not helping you to get well?

    What dose of levo are you now taking and do you have any recent results so that others may comment on here?

  • Thanks so much for the reply. They do test my tsh level and apparently I fall in the "normal" range (sorry haven't got my results to hand). I have suspected all along that levothyroxine doesn't cut the mustard for me. I have muted a change of medication, but as I'm sure you're aware, if you fall in "normal" range - you are supposedly fine!!!!!!! Grrrrrrrrrrrrr. I am going to have one last attempt to get more detailed testing done. I have given them a wide berth for a few months as I get so blinking frustrated when I tell them I am not right and they tell me I am. Before my diagnosis, I would never have questioned a doctor - I now question everything!!!!!!!!!

  • So what results do you have ??????????

    Your GPs may be totally unaware that you may have CENTRAL hypothyroid as opposed to Primary hypothyroid and thus the only way to get NHS labs to test T4 and T3 is to put ????????????????????? central /pituarity hypothyroid on the blood test request

    Before you spend money more usefully used to buy NDT or T3 online go back to the GP and ask that one more time they do the above

    plus

    Ferritin

    Folate

    B12

    Vit d3

  • Did you have the earliest possible blood test for your thyroid hormones and fast. You should allow 24 hours approx between your last dose of levo. (because you take yours at night miss this dose and take after test - you can also take your usual dose at night as usual on the day of your test.

    You might well benefit from the addition of some T3 to your T4. I found an immediate benefit when it was added to mine. Levothyroxine is T4 and should convert to sufficient T3 which is the active hormone required in every receptor cell. T4 is only useful if it is converted to sufficient T3. That's why a Free T3 test is relevant. Some labs wont do any extra tests other than TSH and T4 which doesn't show the whole picture but you can, if you can afford it, get a private blood test from a recommended lab on Thyroiduk.org.

    You must get a print-out of your blood test results with the ranges for your own records and post if you have a query.

    Before blood tests were introduced along with levothyroxine the usual dose was equivalent to around 200 to 400mcg thyroid hormones. Nowadays they usually give a minimum dose and are happy if it is 'within range' even the low end, whereas we need ours to be towards the upper part of the range. Any other clinical symptoms we may have are dismissed as 'not thyroid' because our blood test says so (they imagine).

    Ask your GP for A Full Thyroid Function Test which is

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

    You will see how important a Free T3 test which is on this page too.

    hormonerestoration.com/Thyr...

    If your B12 is very low, did your GP test for a B12 deficiency? He could have done an 'intrinisic factor' blood test which would disprove/prove Pernicious Anaemia. Once that is excluded you can supplement with Vitamin B12 sublingual methylcobalamin (not cyanocobalamin) as it will by-pass your stomach.

    Regards

    I am not medically qualified so comments are based on my own experience and are not to replace a professionals opinion.

  • Pennybain, Ideally you will have TSH, FT4, FT3, thyroid antibodies, ferritin, vitamin D, B12 and folate tested. Private thyroid tests can be ordered from Blue Horizon and Genova. Blue Horizon have recently introduced a comprehensive profile which includes all the above, but you might find their Comprehensive 10 profile + City Assays vitD test is cheaper.

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

  • Ok, thank you for all your very helpful replies. I visited the docs this morning and suggested that I need more comprehensive thyroid testing including t3, b12, iron etc etc and he said that my symptoms have to meet certain criteria for those tests to be approved. I listed my symptoms as per my original post and he feels my migraines aren't related to my thyroid (and didn't even want to explore my theory of an estrogen dominance) but wants to see if we can reduce the frequency of these first (whilst I continue to feel tired and toenails thicken even more). He has prescribed me with beta blockers twice a day. Third attempt to get this sorted and another complete and utter waste of time. I think my only option is to get the tests done privately as I am CERTAIN that my medication isn't working. If it was - why increasing symptoms?

    Exasperated is an understatement of how I am feeling right now!!!!!!!!!!!

    Any suggestions anyone?