Need a GP in West Midlands or London who is understanding of T3 only protocol and supplements

I'm looking for a NHS GP who is understanding of self medication and who also understands the importance of regular blood tests. I'm on a high dose of Cytomel and lots of supplements so need someone who doesn't want to test just tsh but happy to see if all my ducks are in a row!

23 Replies

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  • Good luck with that! Many of us have had to lower our expectations of NHS treatment for hypothyroidism so much so that we've had to go it alone.

  • Many GPs do not know what T3 is as they're taught that Thyroxine is all hypo patients need. They are not taught about vitamins and minerals. BTA guidelines:

    british-thyroid-association...

    My personal experience of taking self-prescribed T3 is that when GPs know I'm not taking Thyroxine there is an expression of fear on their faces. I start explaining why I'm taking it and what it does but without exception the conversation is shut down. They don't want to know.

    Presumably you've not seen an NHS Endo?

  • Cinnamon_girl, this is absolutely my experience. I'm taking so many supplements to bring thinks up in range, I just want to know where I at which it.

    I saw an endo privately 2 years ago. He was totally dismissive and had no interest in my RT3 being above range. I was so sick and he made me feel like an idiot, took my money and closed his book on me.

    I will take a look at the list I have from Louise. However, I'm stable on my t3 dose i just want a GP who is willing to do general blood tests. I expect I have to get them privately.

  • Lynn-2 It's frustrating isn't it. Did the private endo recommend T3 and, if so, did he advise the high dose? Your FT3 level is very high.

    You're getting some good advice but do be aware that NHS Endos can be paranoid about T3 dosage. I saw one this week who thought that 75mcg was far too high and wants me to have another Dexa scan. We all have to make up our own mind as to whether we have some sort of life or no life at all in order to please them.

  • Cinnamon-2 It is frustrating. No, he didn't recommend t3, he was against it and against NDT. I stupidly went to him from my doctors referral. It was a private consultation and a total waste of time and money.

    I understand that future blood tests will be don't privately.

    Good luck with the Dexa scan.

  • Lynn-2,

    Most NHS GPs are expected to have the recommendation of a NHS endocrinologist before prescribing T3. If you are taking high dose T3 I suspect the cost alone will put off most GPs and CCGs agreeing to prescribe it.

    Email louise.roberts@thyroiduk.org.uk for a list of member recommended endocrinologists and practitioners.

    You can order your own thyroid blood tests and vitamin/mineral tests if you can't persuade your GP to test. thyroiduk.org.uk/tuk/testin...

  • Thank you Clutter.

    I'm having trouble getting regular blood tests for iron, potassium etc. I'm self medication t3 and happy to continue but my current GP seem only happy to test my thryroid hormones and Tsh, I can't seem to get her to understand my Tsh is below zero because of the t3 I'm taking.

    If I could find a GP who would be happy to do a full blood panel ever 5 months I'd be happy. I understand I will have to get them done privately, thank you for the link.

    I do have the list from Louise which I will check it out.

  • Lynn-2,

    If your GP won't test FT3 you really need to order your own thyroid tests to make sure FT3 remains within range.

    Why do you need regular iron and potassium blood tests? I don't think any GP will be happy to order blood tests every 5 months unless they think it clinically necessary.

  • My potassium is just below range and my ferritin is top of range. I have high HBA1c and low B12. I'm taking so many supplements I just want to see where I'm at with it. There is no understanding of optimal with my GP. I'm having to do this alone.

    I have requested a FT3 today, maybe they will do this for me. My fingers are crossed.

  • Lynne-2,

    Assuming you are not supplementing iron, high ferritin indicates inflammation somewhere in the body. Was a full blood count done?

    High HBA1c indicates pre-diabetes or diabetes.

    Low potassium should be monitored google.co.uk/search?q=low+p...

    Ask for advice on healthunlocked.com/pasoc about low B12.

    Unless the GP prescribed the supplements it is unlikely your vitamin and mineral levels will be tested on NHS to monitor the efficacy of the supplements doses.

  • I've just re checked ferritin on my last blood tests Sept 16 and it is acutely over range. I'm taking Krill oil as doctor passed results as OK.

    I'm not supplementing iron. It's top of the range.

    I'll check out the links.

    Thank you.

    Lynn

  • Unfortunately unless your GP thinks you are going to drop dead they will not monitor you if you medicate with supplements especially if you self-supplement but this includes the ones they tell you to take.

    This is means it is up to you to work out the doses, sort out private blood tests and understand blood test results.

    GPs only expect you to annoy them if the blood results are really out of range and the private testing companies - who all use NHS labs doing private work - will attempt to phone you and contact you as an emergency if this is the case.

    You will struggle to get a FT3 on the NHS as lab technicians are told not to do the test if TSH and FT4 are in range.

    In short if you are supplementing you must find out and understand why you are are doing so, what levels you should reach and what levels you shouldn't go over. No one can do this research for you and have the understanding except for yourself as every one is individual so levels they need are slightly different.

  • If I could find a GP who would be happy to do a full blood panel ever 5 months I'd be happy. I understand I will have to get them done privately, thank you for the link.

    I don't actually understand the bit above. Are you expecting your GP to act in a private capacity? Or expecting to get blood tests arranged by him and you will pay for them? Or just expecting the surgery to take blood for you for a fee so that you can order private tests?

    I'm not sure that any of those things are likely to happen, to be honest. A very few surgeries will agree to take blood for a fee. Most won't do it though. And GPs aren't usually allowed to mix NHS and private work in their surgeries. Those that have tried it have been told off about it because it goes against the contracts they have with the NHS.

    What many people on here do is pay for finger-prick tests which are arranged online or over the phone, kits get sent through the post, and then blood samples are sent back to the lab through the post. Then results are sent back via email. Then the patient copies the results into a post on here and asks for feedback from the members.

    Some private testing, depending on company and test package paid for, will include phlebotomy (taking a blood sample from a vein in the arm)in the price.

    The tests that can be done as finger-prick tests sometimes offer the same test for the same fee with a blood sample taken from the arm. i.e. The test is the same price, but phlebotomy has to be paid for, or can be done by anyone who can take blood for you, e.g. a friend or colleague with nursing training.

    If you want a full blood count, you can do this with a finger-prick test from Medichecks for £39.

    medichecks.com/haematology-...

    If you want a set of TSH, Free T4 and Free T3 you can get that done with finger-prick from these two links :

    bluehorizonmedicals.co.uk/P...

    medichecks.com/thyroid-func...

    If you want Thyroid plus nutrients tested then these two links might be of interest :

    medichecks.com/thyroid-func...

    bluehorizonmedicals.co.uk/T...

  • No, I meant I would get a private company to do the tests. I realise my GP would not act privately.

    Thank you for the link above.

  • I've just checked my FT3 from last September and it's well above range.

    FT3 13 pmol/L (2.60 - 5.70)

    Is this to be expected when taking Cytomel? Should I ask this on another post?

  • Lynn-2,

    No, FT3 should remain within range ie <5.70. If you took T3 before your blood test it will peak in the blood for up to six hours giving a false high reading. If you left 12+ hours between last dose and blood draw you were very over medicated.

  • Yes, I had a 12 hr fast from b12 and t3, I don't take iron. My temps are now consistent at 98.2, if I lower my t3 dose my temps drop. I think I've cleared the receptors of RT3 which has been my problem. I'm slowly reducing my t3 dose but my temps are going down with the drop.

  • Lynn-2,

    You were very over medicated to have FT3 13 12 hours after last dose. What does it matter that temperature drops? High temperature can be a sign of over medication.

  • I saw Dr Peatfield a few months ago and he suggested a drop some T3 and add in a grain of WP thyroid. I was concerned about the NDT as I don't want to take anything that might increase RT3.

    He thought I was pooling T3 as was very hypo. That rt3 result was from sept 16 since then I've started to drop my Cytomel dose slowly. I'm in need of guidience regarding adding NDT.

  • Lynn-2,

    If you've been taking T3 only 4 months or more high rT3 should have cleared and you can add Levothyroxine or NDT. I would retest TSH and FT3 first.

  • Thank you for this advice clutter. I really appreciate it.

    I will drop some t3 and add in some NDT

  • Lynn-2,

    My advice is to test FT3 first. If you are still overmedicated the T4 in NDT probably will convert to rT3.

  • I'm ordering my private tests this weekend.

    I'll get back to you once I've got results.

    Thank you

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