Newbie - question about thyroid test results on NHS

Hello

I'm here because I have had ongoing fatigue for the last 8 months, and so far nothing seems to explain it. I have recently been diagnosed with endemetriosis, but 2 gynaes have told me that they don't think my fatigue is due to Endo in this case. I have terrible PMS, bowel pain, and a very physical fatigue that makes my legs heavy and my body just give up. I'm 42 but feel like I'm in my 80s. A few months ago my thyroids was tested on the NHS, and all was 'normal'. Today I got the actual numbers:

B12 - 544

Folate - 9.9

Thyroid: TSH - 2.6 ; T4 - 13

My symptoms closely match Adrenal fatigue. Although in the NHS range of 'normal', do these results indicate that I may have a probem with my thyroid or endocrine system?

Any comments very much appreciated

10 Replies

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  • mountaincat It would help if you put reference ranges as well as results. As ranges vary from lab to lab it's impossible to give accurate comments without them, particularly for FT4.

    Your TSH is a bit high, it will certainly be in range but it does show your thyroid could be struggling.

    Your FT4 - if the bottom of the range is 12 then it is far to low, but if the bottom of the range is 7 or 9 then it isn't that low so a range is needed (usually in brackets eg FT4: 17 [12-22] )

    Your B12 is over 500 so no real problem but it is recommended to be at the very top of the range, even 900-1000. Personally I would supplement methylcobalamin sublingual lozenges 1000mg with that result.

    Folate - no idea without the range.

    You really need ferritin and Vit D tested. Low ferritin can cause fatigue.

    Also useful to get antibodies tested - thyroid peroxidase and thyroglobulin. NHS do TPO antibodies but not TG.

    You can get all these tests done privately with a fingerprick test with Blue Horizon if your GP won't do them.

  • Thanks for all the info. i had no idea that different labs had different ranges.

    It was hard enough getting the numbers at all, initially I was just told they are all 'normal', had to press to get the actual figures.

    If I get all the tests you mention from Blue Horizon, it would need to be the +11, as I understand it. That's £99. Quite a lot of money (especially for a self-employed person who's not been earning due to said fatigue). Is it worthwhile - especially if my GP may well ignore the results?

  • Some GPs take notice of the BH tests, some don't. If yours won't then you could say something along the lines of if he wont accept the BH results then will he please do the tests himself. Of course, if all your results come back satisfactory or optimal then he wont, but if they come back showing problems then throw down the challenge.

    When you have tests done in future, always ask for a print out of your results, you are legally entitled to them under tthat he Data Protection Act 1998 and they can't refuse but may make a small charge for printing.

    Unfortunately, due to the ridiculous guidelines for hypothyroidism, your TSH has to reach 10 before most GPs will diagnose and prescribe Levo. If you have positive antibodies confirming autoimmune thyroid disease aka Hashimoto's then some enlightened doctors start Levo to nip things in the bud.

    It's worth having your vitamins and minerals tested and optimising levels.

    We all have to decide how to budget our money. I'm widowed and on a pension so I have a fixed income, but it's important to me to try and sort my problem out because my GP doesn't help.

    You can get. Vit D test for £28 through City Assays. Ferritin alone costs £39 with Medichecks. It doesn't look as though antibodies can be done alone but Medichecks are doing everything that B H +11 does except Vit D for £69 medichecks.com/find-a-test/...

  • thanks, that's v helpful. Maybe I could do medichecks and see if I can get vit D tested on NHS.

  • To get vitamin D on the NHS you need to fulfil a few criteria. The easiest one is to describe your symptoms of tiredness with any pain in detail plus skin, hair and nail changes, and make it clear that you are inside most of the time. Even then there is no guarantee that you will get a test as GP surgeries are dissuading loads of people from being tested and just telling them to take low amounts of vitamin D instead to save money.

    You more likely to get your haemoglobin tested for iron deficiency. If you do get your haemoglobin tested get the result and range. You should have this tested anyway as it goes with your ferritin result. Also some NHS areas set their range at a lower level than what the World Health Organisation recommends.

  • OH dear, it's crazy isn't it; surely it's a false economy for the NHS to not do these blood tests? Patients, if they don't know what's wrong with them, can't get treatment or make changes to get better. They will in most cases just get worse and keep visiting the doctor, and may end up needing much more expensive treatment than a blood test.

    I was fobbed off by GPs for years regarding my menstrual symptoms, and told emphatically that Endometriosis was not possible in my case. In the last year I have had numerous gynae appointments, scans, an MRI, and laparoscopic surgery with 2 nights in hospital. Endemetriosis was the diagnosis. If someone had listened 10 years ago, my large ovarian endemetrioma could have been avoided or caught at an earlier stage. Anyway - that's a bit off-topic for this forum.

    I don't have changes to my hair and nails, so I suppose that means my vitamin D levels are fine? Or could they be low but just not low enough to meet stringent NHS criteria? I could try to get my haemoglobin tested for iron deficiency as you mention - will I come up against any hurdles with that one?

    Thanks for all the useful tips..

  • There is nothing wrong with your logic but the NHS doesn't work like that as you have found out in a horrible way.

    The main NHS regions e.g. England, Scotland, Wales, NI write documents some which you can find online which indicate their criteria for when people should be tested for things like vitamin D based on NICE guidelines. These are then interpreted by healthboards and CCGs , and finally GPs.

    As GPs control their own budgets they decide which patients they are going to treat and which ones they can ignore without being struck off. So even though the NICE guidelines or a hospital consultant states you should be tested for something and treated, if your GP disagrees you won't get tested. You can change practices but unless there was something wrong with you which private tests/another medical practitioner such as a nurse even in the same old practice uncovers you won't necessarily find GPs at the new practice will listen to you.

    Added to that there is no consensus on what levels of vitamins and minerals are needed to be in optimal health. This is because levels needed vary due to age, sex, genetics, lifestyle other illnesses and conditions.

    Doctors are also practitioners not scientists though some medical doctors are also research scientists, and they now admit they know nothing about nutrition and exercise:

    theguardian.com/society/201...

    Anyway in regards to getting your haemoglobin tested for iron deficiency anaemia if you have heavy periods then just tell the doctor that you have them and how you feel. If you make enough fuss they may test you for that.

  • I don't have changes to my hair and nails, so I suppose that means my vitamin D levels are fine?

    I didn't have any symptoms attributed to low levels of vitamins and minerals yet when I got them all tested (privately) my Vit D was severely deficient at 15, folate and ferritin very low in their ranges and the only one that could be considered reasonable was B12.

  • When you were tested privately, did you see a private GP, a naturopathic doctor or get blood tests done by post?

  • mountaincat I did private blood tests about 18 months ago originally, through Blue Horizon. They do a good value bundle that includes TSH, FT4, FT3, TPO and TG antibodies, Vit D, B12, Ferritin and Folate bluehorizonmedicals.co.uk/T... It's a fingerprick test you can do at home or, if you can get blood drawn, you can have a normal vacutainer (or pay for a home visit by a nurse to draw blood for an extra £45). It's the test most recommended on here for members who can't get full tests from their GP.

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