Feel terrible & don't know where to turn

Hello,

I'm new here and so glad this community exists! I've been feeling ill for about 6 months, with symptoms I think many of you will recognise! Dizziness, hair loss & dry hair, scaly skin, sore cracking joints, and fatigue.... I'm running on coffee and naps at the moment!

Paid for private thyroid panel and the TSH and Vit B12 have come back abnormal but NHS Doctor is trying to put me on antidepressants (what????) and I feel kind of, helpless. Ive listed my results below. If anyone has any advice they can offer i'd be very, very grateful for anything I can learn.

TSH: 5.6 (abnormal) (0.27 - 4.2)

Total T4: 71 nmol/l (59 - 154)

Free thyroxine: 15.6 pmol/l (12 - 22)

Free T3: 5.93 pmol/l (3.1 - 6.8)

Reverse T3 - next week

Thyroglobulin antibody: 15.6 iu/ml (0 - 115)

Thyroid peroxidase antibodies: 7.2 iu/ml (0 - 34)

Vitamin b12: 175.2 pg/ml (abnormal) (191 - 663)

Folate: 9.99 ug/l (4.6 - 18.7)

25 OH Vitamin D: 75.9 nmo/l (50 - 200)

I'm based in London.

Thank you so much :)

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21 Replies

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  • I'm so sorry, even when I enlarge the photo I can't read the results. Would you mind typing it out? I know it's a pain but it will be better to not have to guess the correct numbers. :-)

  • Of course- thank you for letting me know!

    TSH 5.6 (abnormal)

    Free thyroxine 15.6 pm/l

    Total T4 71 nmol/l

    Free thyroxine 15.6 pmol/l

    Free T3 5.93 pmol/l

    Reverse T3 - next week

    Thyroglobulin antibody 15.6 iu/ml

    Thyroid peroxidase antibodies 7.2 iu/ml

    Vitamin b12 175.2 pg/ml (abnormal)

    Folate 9.99 ug/l

    25 OH Vitamin D 75.9 nmo/l

  • Great, thanks. If you click on that little arrow next to the 'like' button and hit 'edit' you can add the ranges (the numbers in brackets after the results). Sorry it's such a faff but that will be everything done, then it should become clear what's going on.

    For a start I can see your tsh is too high and your b12 is far too low.

  • You're a star. Have edited the original post. Thanks for being so kind.

  • No worries, sorry I couldn't work w the original photo (tbh my eyes aren't what they used to be but enlarging just made the numbers blurry). Thanks for sorting it.

    This is not a result I'm familiar w as your tsh is a bit high and t4 lowish but t3 looks robust. Your antibodies are also in range so there isn't any autoimmune activity to speak of (unless those low numbers mean anything to anyone else). Have you had an infection recently? Pregnancy? These can affect thyroid function and tsh. Your symptoms deffo sound like there's something going on in the thyroid area, but it takes more than symptoms to get treated.

    I'd start supplementing d and b12, and keep monitoring the thyroid situation. Maybe next time you have bloods done see check your ferritin/iron.

    You may need a loading dose for your vit d. It can be v difficult to get it right when you've been very low. Have a look here: imperialendo.com/for-doctor...

    You can buy blood spot tests to monitor d. If you're supplementing you don't want to take too much for too long, so best keep an eye on it.

    I'm sorry I can't give you more info on what's going on w your tests. Someone else who knows more than me may have some ideas.

  • Yes, it looks like TSH is too high and B12 too low. Also folate looks on the low side doesn't it? People advised me to take a sublingual methocobalamin and folate in the form of methylfolate. Also to take a good B complex at the same time. This has improved things for me. I also take vitamin C a low dose of Vit D3 and K2 and magnesium. I also take a dose of organic apple cider vinegar every day along with a glass of water before my main meal. All this has made a difference for me. I hope you soon get back to feeling well.

    FT3 looks quite good. Do you think if you get your vitamin levels sorted out your TSH might return to a more normal level? Anti-depressants seem to be the current favoured option for anything the NHS can't/won't test for...stick to your guns. If I were in your position, I would get my vitamin levels sorted then retest TSH and if still highish consider top up of Levothyroxine.

    Did you get your ferritin and iron levels tested? That needs testing too. That is definitely something the NHS should be able to do. How do they know someone needs anti-depressants when they can't test for low serotonin levels? However, you have evidence of a problem with B vitamins so NHS should help you put that right.

  • I may be talking rubbish, but could it be Thyroid Hormone Resistance? Will be interesting to see your rT3 result....

  • Thank you all for spending time on this.

    The suggestions to fix the vitamin deficiencies and see what impact this has on TSH might be the way to go. I'm 35 and I eat a good high protein diet & veg (and no sugar!) so I'm stunned by the vitamin deficiencies.

    I'm seeing NHS Doctor again Monday morning to get a test for pernicious Anemia, I'm wondering if my synptoms could be a result of this + early stage hypothyroidism.

    It feels like my whole immune system has gone in to overdrive between this and severe allergies I've had the past few months.

    I have been under a lot of stress this year so it will be interesting to see the RT3 and I'll certainly post it here.

    Very grateful for your advice xxxxx

  • Advice on Methocobalamin and Vit D loading noted xxx

  • Yes I wouldn't take b12 until pa test.

    If you lived in Germany or USA you would be diagnosed as hypothyroid. Here they wait until your tsh is above 10.

    I couldn't get out of bed when I had similar results. Your free t4 is far too low!

    Sue

  • That's interesting you felt the same way. Do you really think the free T4 is too low?

  • absolutely - it should be 22 - this is what you have in store, so have a shower in the morning, do a bit of shopping and that's it, you will have a job to do much more!

  • You are/are going hypothyroid, not depressed (although you are probably pretty fed up). GPs get more funding points for prescribing anti-depressants than thyroid meds, and ADs tend to make people shut up and go away (with a "probably a nutter" label). In spite of having a range for TSH (and you are over it) the NHS often won't treat until TSH is about double the top of the range and you become very, very ill.

    However, your thyroid won't work right unless your B12 is around 1000 (yours is very low - were you offered injections as anything under 500 can cause permanent neurological damage?), folate is at least mid range - yours isn't.

  • Hello angel. Thank you. I feel hypo!!! I'm going to insist on vit b12 shots when I see the doctor Monday. They said it's not low enough last week and made me feel like a crazy woman for asking. I would like to get at least some treatment and further tests on the nhs before going private so I'll try a different doc on Monday and see if he's any more open. If not, I might be looking for private recommendations soon.

  • Ask on the HU PAS forum healthunlocked.com/pasoc for advice on B12. But the NHS is so strapped for cash that you probably won't get treatment from GP (certainly won't for thyroid)- ask for referral to haematology to test for PA.

  • Thanks angel. I got the impression on the phone last week that they're willing to test for PA but not treat the vitamin b deficiency, in which case I'll find another way. I've just posted on the PA forum you linked as well. Many thanks for your help.

  • You need to fix that B12, as well as get onto a comprehensive supplement program that includes trace minerals. But that high TSH in combination with high FT3 is troubling; how can FT3 be quite high when FT4 is rather low? This makes me wonder if you have T3 resistance or Euthyroid Sick Syndrome (ESS). I would wait for your rT3 result, then figure rT3/FT3 ratio to see if that is a possible source for the problem. If rT3 isn't a problem, then it looks like you should be on a T4-only supplement, since your FT3 is already pretty high. One can only hope that fixing your nutritionals will help utilization of T3.

  • Thank you. I was wondering that myself about the T3 being quite high. I read an article which said in the early stages of hypothyroid disease sometimes the T3 does spike. I'm not sure to be perfectly honest, but I will post back here when I get the RT3 as we seem to have a lot of knowledgable folks here helping. I'm going to get b12 shots from next week. Slightly rattled to see it quite so low!

  • P.S. - whatever you do, just say NO to anti-depressants. The side-effects were a killer for me.

  • You seemed surprised that you eat. Well and low vitamin levels. Don't worry it's nothing you have done or not done, just what happens! Most of us supplement as these levels need to be high to convert the inactive T4-the Levo, into the active T3 which all of our cells need. Keep posting anything you don't understand. Nothing is too trivial, we have all been there!

  • Went to the GP today and he is repeating all tests I had above plus testing for pernicious anaemia. He did say they don't generally treat until TSH is 8 but depending on the test results he may refer me to an endocrinologist instead.

    In the meantime I've had my first vitamin b12 shot at this place I found which offers the lower price I'd found in London of £35. harpalclinic.co.uk . Thinking of going 3 X a week for the next fortnight as I've read that's the correct loading period. I'll let you know when I hear back. Thanks to all those who offered advice xx

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