Some advice please

Ok so I posted on here with results a while ago. They were in range but my TSH was 3.17 (0.27-4.20) and T4 was 14 (12-22)

Managed to persuade the GP to prescribe Levo as my symptoms were horrendous. Family history of Thyroid problems. GP then does a U-Turn and says as my results were in range I should not be on Levo and to have a blood test for antibodies.

I came off the Levo for a week and took another Blue Horizon blood test. These are the results:

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)

The comments from the BH Dr are:

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 also suggest you make an appointment to see your doctor – at least surveillance of thyroid function would be wise, as it would seem in this scenario that an underactive thyroid gland might be developing.

I stopped the Levo 8 days before I did the blood test.

I know I'm being a bit thick here but what do you think? I have terrible brainfog and am freezing cold again (my Levo had started to kick in and I was feeling much warmer) and am so tired.

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17 Replies

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  • Skyrocket,

    Around half of the dose of Levothyroxine you were taking should still be in your system 8 days after your last Levothyroxine dose. It appears that TSH had started responding to the Levothyroxine but FT4 dropped. I don't understand why FT4 dropped below range, it should have increased. If a subsequent thyroid test shows FT4 below range you should be prescribed Levothyroxine even though TSH may be within range.

    Antibodies are negative for autoimmune thyroiditis (Hashimoto's).

    My thinking is that you felt improvement on Levothyroxine ergo you need Levothyroxine. You could discuss this with your GP and see whether s/he will reinstate Levothyroxine. If not, you might consider self medicating.

  • Thanks for the reply Clutter. I was taking 50mg before I stopped for the 8 days for the blood test so not a huge amount by most people's standards but I was starting to feel some benefits before I got the call from my GP.

    I think she is being put under pressure because my levels were in range even though I have been having horrendous symptoms.

    Could something else be causing the low FT4?

  • Also is the Free T3 not on the low side?

  • Skyrocket,

    Yes, I think pressure was probably put on your GP as she was prescribing outside of guidelines.

    I don't know why FT4 will have dropped after taking 50mcg. I think you will have to test again in case it was a blip with the test analysis. If FT4 remains below range your GP should prescribe Levothyroxine.

    FT3 3.93 is surprisingly good considering FT4 is below range.

  • This is how Thyroiduk.org.uk interprets results which I think is much better than doctors ignoring low FT4 and FT3 levels. We cannot function if T3 is low.

    Both your FT4 and FT3 are too low.

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

  • I emailed BH back as the Dr that analysed the results had asked which meds I was on and explained I had stopped the Levo 8 days before the test and the Dr emailed back:

    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 at least it looks as though you need to be taking thyroxine replacement, though please discuss your thyroxine requirement with your usual doctor.

    I have a referral with an Endo at the end of April but I have no confidence they will do anything other than take me off the Levo. I might make a private app with one of the recommended Consultants. My GP had wanted a blood test for antibodies which clearly show I don't have Hashis so I don't think she will be able to help me.

  • skyrocket how utterly sad and frustrating this all is (understatement I know but words fail me). What you are up against could so easily have been my story, that's no consolation I know but I get where you are at.

    **Your initial tests that were done by your GP showed a failing thyroid (TSH 3.17) and your free T4 was very low in range (14).

    **The notes you have from the doctor after subsequent private tests <<From this result at least it looks as though you need to be taking thyroxine replacement, though please discuss your thyroxine requirement with your usual doctor.>> back up your own diagnosis.

    **Thyroid UK's interpretation of such lab results would also suggest that levo treatment be started thyroiduk.org.uk/tuk/testin...

    **Hypothyroidism runs in your family.

    **The longer it is left untreated, the more severe the symptoms, and the longer the recovery.

    NICE guidelines are there as a GUIDE, not an absolute, although that is most likely why your GP has had a change of mind, but you are SYMPTOMATIC and that should matter. (You could ask how she might assess you if you were on antidepressants as there is no blood test?!)

    When I think back to May 15 when I first went to my GP (for perimeno symptoms, or so I thought at the time) my TSH was 3.5 (0.2 - 4.2) and I was already starting to have hypo symptoms but didn't register these as being related, never mind thyroid - always cold, spells (i.e a day or so) of severe fatigue especially after a lot of physical activity, constipation, sinus and PND, insomnia. Your TSH at 3.11 was not so far off where I was at. (HRT seemed temporarily alleviate the insomnia, but little else, and may have actually made things worse and interfered with the thyroid, but who knows!) Fast forward to Oct 16 (18 months or so) and it all ramped up and like you I found this forum which has been a life saver and helped me to understand what's going on.

    I don't know if it is at all helpful or whether it made a difference, but I wrote to my GP outlining that my TSH was elevated and that I was symptomatic (listed these out as well as examples of what I could do 2 years ago and how little I can now do). Admittedly I had antibodies, which I know don't (yet??) show for you. But in your shoes I would do the same again and refer to the many references to subclinical hypothyroidism becoming overt and attach a copy of Thyroid UKs interpretation of results. Your TSH is high in range, your free T4 is very low and you are symptomatic, and it runs in your family -Doh! I wonder if having this all in writing, along with reference to how you had started to improve on the levo might enable her to consult with another GP at the surgery, such that she re-instates the levo. I'm assuming the reason for stopping the treatment is so that the Endo sees you in an 'untreated state', but the end of April is a long way off.

    I've been thinking of your post for the last day or so, and what would be helpful to you. It's such a miserable place to be, but be determined and keep going back to GP. I wish you luck - we shouldn't need it, but sadly, that is the reality.

  • SolsticeSS I have just seen this wonderful post from you and I wanted to say thank you so very much for taking the time to write such a message. I genuinely appreciate it.I logged in this morning to steady my nerves as my appointment with the Endo is this morning and i'm nervous as heck!

    I've been on 50mg Levo for a few months and it has improved things but not totally. I am having a cold day today and feel shattered and sick with worry that they will take me off the Levo. I have all my printouts and results so going to go and 'state my case' and your message galvanises me and I am trying to memorise as much as I can so I can relay your concise points to the endo but my brain fog is bad. (It's pathetic but as a 45 year old businesswoman I dearly wish someone could come and speak on my behalf!!)

    My plan is if I get the brush off from this endo I will contact one of the recommended endos and go private and if still no joy I am going to self medicate.

    Is it normal to feel initial relief from dose and once that has 'stablised' for some symptoms to return albeit milder?

  • Best of luck with your appointment.

    Yes it does seem to be the norm for milder symptoms to return. Just be careful how you word that because it can be used against you. Best to be positive and say you have noticed an improvement but that you would like an increase.

    I have improved but it's a slow journey, posted my bloods last night as TSH down but so are my FT4 and FT3.

    Really hope it goes well 😊🤗

  • Do post again after your appt so that you get others thoughts as well. There are so many with more experience. 😊

  • SolsticeSS well what a waste of time that was. 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, felt my neck and looked at my shins said all fine, ignored family history. 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. 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'.

    I am sat in blood test room and just want to cry

  • Just seen your message having posted a reply in shaws post. Will read through your message and come back to you. Really sorry it went so badly, must feel like a complete waste of time.

  • 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.

    He made me feel like a neurotic old woman.

  • Does anyone know what the tests he has sent me for will show?

  • skyrocket start a new post seeking next steps following your experience today so that more people see it and you might get clearer guidance. It's the luck of the draw when you're borderline, which isn't helpful I know.

    I think the tests relate to Thyroid, antibodies and gluten sensitivity.

    It's all so bewildering and you've had one hell of an experience. I'd have been in tears too and then wanted to go back and punch his lights out, the arrogant kn@b.

    But you can deal with this, because sadly you have too. Easiest first move would be to change GPs - I know not actually that easy, but going private could be costly. There are some recent posts of newbies doing well with private and I'll try and track down posts.

    Best wishes and good luck 🤗

  • Thank you I will write a new post. I think sadly my GP practice is the best in the area (which says it all)

    I really appreciate you having taken the time to reply to me. It means a lot x

  • Everyone says the hypo road isn't straight and has lots of twists, I'm starting to see that too. Lots of hurdles to jump and just when you think you're heading in the right direction, up pops something to remind you - 'hey, this is the hypo road and I'm here to catch you out and make life difficult' 😲

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