What should my next steps be?

I am 'within range' on my thyroid tests although very symptomatic. My GP started me on 25mg then 50mg Levo 3 months back and though there have been fair improvements I am not 'there' yet.

For reference my last blood tests were:

TSH 2.02 (0.27-4.20)

T4 Total L 63.7 (64.5-142.0)

Free T4 L 11.75 (12-22)

Free T3 3.93 (3.1-6.8)

Anti ThyroidPeridoxidase abs 7.4 <34

Anti Thyroglobulin abs <10 (<115)

(I had been off Levo a week when I did the test as we were away and numb-nuts here forgot her meds) which is why my FT4 tanked.

GP did have a wobble about me being 'in range' but was waiting to see what the Endo said as was waiting for him to do a scan of my thyroid.

Saw Endo today and it was a disaster.

He immediately said my TSH was 'normal', refused to acknowledge the private blood tests I'd had done, ignored the fact I was improving on Levo, refused point blank a scan of my thyroid and said it was ridiculous to suggest one as they were only given in a very specific situation and would be of no benefit to me.

He felt my neck and looked at my shins (no idea why?) said all fine, ignored family history (Mother and Grandma have thyroid issues).

He said it was drivel that one should do blood tests after fasting and with no Levo. He discharged me but has insisted on doing blood tests for TPOA, TFT, IGF1, TTG, Coeliac which he sent me for straight away even though I had my levo this morning and have eaten.

I also took in a spreadsheet of my waking temps showing gor the past month it averages 35.7 but has got as low at 34.3 before but has been improving on levo -ignored it.

I had a checklist of symptoms which he dismissed too because they could be anything and nothing

I said in the US with my TSH and a family history they would be treating me and he said that was US not here (which is what my GP said too)

He went on about the risk of heart attack and osteoporosis if I carry on taking Levo and I said that risk was small, he said it was a huge risk so I asked what stats were and he brushed over it.

Said he will write if anything shows up but he doubts anything will and 'tiredness is a part of life for a woman your age'.

He made me feel like a neurotic old woman. :(

What should my next steps be?

I know my GP will now take me off the Levo as she was waiting on the back up of the Endo

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14 Replies

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  • Thank you! I was shocked when he said I couldn't have a scan and that they were rare. It's an ultrasound so hardly hugely invasive or dangerous!

  • Have you checked him out on line to see what his specialism is? You can do this by checking the hospital staff lists. He could be a diabetic specialist. In which case you would be a great puzzle for him!!!!

  • I looked him up on the GMC register and it says his specialisms are:

    Endocrinology and diabetes mellitus

    General (internal) medicine

    Looks like you're right! So frustrating that we get pretty much one chance like this for referral to get referred to someone who doesn't even know about the subject! :(

  • Get another referral from your doc and explain why in no uncertain terms. On the lines that the guy you saw did not know anything about thyroid. Did you get a name for thyroid? If so you are entitled to name names. Go for it.

  • Look up staff at the same hospital.

    janveron

  • They have to stop telling fairy tales. No you wont get osteo or heart attack if you take thyrid hormones. You might if you don't take them if you have hypothyroidism.

    They are so poorly trained and you do expect an Endocrinologist to understand about deficiences but I am afraid and the patient suffers. They've been told only to diagnose if TSH is 10 (in other countries it is 3+). Regardless of your TSH of which they should take no notice but concentrate on the FT4 and FT3. Your FT4 is below range and your FT3 is low. You need levothyroxine.

    Some links:

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

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

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

    Go to your GP and you can say you have contacted the NHS Choices for information about dysfunctions of the thyriod gland and have been advised that you should be on levo due to your low FT4 and FT3. I don't know if he'll take the Endo's diagnosis as a definite.

    Others will also respond. Because your FT4 is so low, it cannot convert it to T3. T4 is inactive and has to convert to the Active Hormone - T3 - the only Active thyroid hormone without which we cannot function normally.

    Always get your blood test at the earliest, fasting (you can drink water) and allow a gap of 24 hours from your last dose of levo and take it after the test.

  • Thank you for your reply shaws

    I'm still reeling this morning from the experience. I need a repeat prescription because I am due to run out but I am dreading phoning her up because she will ask how it went yesterday and I feel like I have to argue my case (which of course we do) and my head is foggy at the moment.

    I will print out the info and go and see the GP next week and state my case again but if she takes me off the Levo I don't know what next.

  • Just put in your request for prescription. If she does ask, say you'd have been better going to a Vet as you'd have got more consideration and help as they deal with animals who cannot tell them what's wrong rather than an Endo who pays no attention to the patient.

  • Were these results from after you'd been on levo and then were off it for a week?

    Yours was a typical endo experience. They tend to be more conservative than the odd gp who might go out on a limb for you.

  • Yes they were. My previous results were similar although my TSH was 3.17 and my FT4 13. Highest I have seen my FT4 is 14.

    The Dr from Blue Horizon had added the message:

    "The free T4 level is low. In the presence of a normal thyroid stimulating hormone level (TSH) and normal free T3 level it would not surprise me to learn you are taking liothyronine (T3) instead of Levothyroxine - is this the case?

    If you are taking a form of thyroxine medication already you may need to adjust your dose - a discussion with your usual doctor would be sensible. If not I suggest you make an appointment to see your doctor - at least a surveillance of thyroid function would be wise, as it would seem in this scenario that an underactive thyroid might be developing"

    I emailed back to say i was on Levo and had missed a week due to being away and they replied:

    "That would fit - the free T4 is likely to fall soon after ceasing the medication. If you had persisted the TSH would have risen too usually within a few weeks of withdrawal from Levothyroxine.

    From this result it looks as if you need to be taking thyroxine replacement though please discuss your thyroxine treatment with your usual doctor'

    The Endo read through it but dismissed it as he doesn't believe in private blood tests etc and would rather trust his own labs

  • More likely he didmissed it because he hadn't a clue but a diabetic specialist! I Also have a feeling you can't be taking off medication if you don't want to but may be someone can comment on that.

    Thyroid Uk have a list of endos that others have recommended or you could post and ask from replies by private message only if recommended endo'S near _________ and say whether you are willing to travel further etc.

  • It was actually a diabetes clinic so you could be right!

    I think my GP will stop the Levo because she was initially happy to put me on it then she started wobbling about me being 'in range' and said we would continue on it and see what the endo said.

    I have one of the recommended Endos near me in Harrogate so I might have to go private and see if he is as sympathetic as they say and he might refer me back to NHS (maybe?) they might listen to me then.

  • If you know who recommended the the endo could you send them a private message and ask these questions or ask in a post if anyone is seeing an endo in _______ and ask if they can share their experience with you by private message? Just realised I have already suggested this higher up the thread but it would be a useful exercise.

  • That's a good idea. The recommended Endo is on Thyroid Uk's list so I don't know if the person (s) who recommended him are still here but I will put a post up and ask. X

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