To think my gp is wrong to do this

[waitingimpatient]

I am ttc and have had IVF/FET cycles.
Part of the initial tests was thyroid investigations which came back with higher than ideal TSH level
The clinic put me on levothyroxine.

I had not realised that the symptoms i'd had for years previously were due to this-tiredness, constipation, heavy periods and constant anaemia due to that, generally feeling awful. I had been seeing the gp a lot and kept thinking it was the anaemia.
I started to feel better and with tweaks in dosage I feel hugely better now.

However, currently I ha e to get private prescriptions which is ok (it's cheaper than nhs!) but obviously at some point I won't be under the clinic care so saw gp to see if they would prescribe for me now as I will need this for life whether ttc or not (I also had thyroid antibodies)

Gp refused and I've been told that when I'm not ttc/ under care of the clinic I will just have to stop the tablets then let my tsh levels rise and symptoms return before the nhs will treat/prescribe as my levels were 'subclinical' at 4.8 and they don't seem to care that I also have thyroid antibodies ?

I'm dreading it ! I don't want to have to feel that bad again it took months to get the dose right and now I'm anxious at some point I will have to stop medication and get ill again ??? I think the gp is out of order

Subclinical hypothyroidism is medically controversial. I was diagnosed during my pregnancy, my TSH was a tiny bit below the local guideline cutoff (something like 9.5, with antibodies present, but back in the day they wanted it to be 10) but my OBGYN told me to start medication because she feared pregnancy complications. I've been on levothyroxine for more than six years, it lifted the brain fog that made me unable to think clearly, but under the local system (not in the UK) I am not eligible for free medication. I would be had my TSH been 10.0 when I was first diagnose!. From experience, I feel best when my TSH is somewhere between 1 and 2 (

Sorry, meant diagnosed.

A bit dated, but here's a paper on subclinical hypothyroidism. The controversy has been going or for quite a few years and may already have influenced guidelines.

OP, if you have antibodies, you have Hashimotos rather than 'standard' subclinical hypothyroidism. GP should refer you to endocrinologist. Ask for second opinion if they won't. In Hashimotos, symptoms are often proportional to anti-thyroid antibody levels more than TSH (search google scholar for this and if necessary print out for GP), so not surprising you felt crap at normal TSH. It is tricky and NHS are not always great at managing, but you shouldn't have to go private, you are just as entitled to NHS care as any other ill person and shouldn't let them fob you off just because it's not immediately fatal.

Thanks I will ask for t3 and t4 tests

Is it both types of antibodies that are dangerous in pregnancy or more one than the other ? I'd read they can cause failure to implant and mc? Not sure if it's both or one that cause this

I'll ask for an nhs referral to an endocrinologist too thankyou

Unfortunately the NHS is not good at helping with Thyroid problems, in my experience. Even if you do get the synthetic Thyroid hormone, it is not treating the underlying cause. My Thyroid was going from over active to under active (2.8 TSH) and I have the antibodies, they have only prescribed medication for the over active periods.

Get this book: www.amazon.co.uk/Iodine-Crisis-What-about-Wreck/dp/098603200X/ref=sr_1_1?s=books&ie=UTF8&qid=1452938748&sr=1-1&keywords=the+iodine+crisis

Look at the youtube vidoes by Dr Brownstein and Dr Jorge D Flechas on Iodine and the myth about it being bad for you.

I am following the Iodine loading protocol (including all the 'co supplements') and feel MUCH better. Hardly any lethargy, constipation and depression.

...oh and the Iodine has not made me go over active either!

don't take the Iodine without reading the book, or Dr Brownstein's book, it has to be taken with certain other supplements at the correct amounts to work, especially with a thyroid problem.

Haven't read tft but levothyroxine is free of charge on the NHS and qualifies you for free prescriptions for all meds.

No my gp said if they prescribe it while I'm ttc it will not be free

Hence why I've just stayed getting private prescriptions as they are cheaper per item
She said it was because I'm sub clinical tsh level that it wouldn't entitle me to free prescriptions

Waiting your best bet is to share how worried you are and see if you can see an NHS endocrinologist. Raise that you have antibodies and are concerned about Hashimotos, and this not just being subclinical hypothyroidism. GP may suggest doing this nearer the time given that you are on thyroxine now while you are TTC.

Is there a GP you particularly get on with in the surgery? They may not want to go against prev GP's decision but it may help you in speaking to one you know you can relate to better. Also have a look at the surgery website - on the 'About the team' section it will tell you what the GPs' special interests are - see if one has an interest in thyroid or endocrinology.

Thanks I will see them again and try to get my point across

It's just that fear of having to stop medication at some point and return to feeling like absolute shit that I'm worried about. I knew I felt bad but I did t fully realise how awful it had been till I started to feel better and I really do t want to return to that

Perhaps ask the GP to check your history of visits and complaints pre taking the medication and post taking it? Tell her you can actually feel the difference and does she want you clogging up her surgery when the right prescription would make all the difference to you.

I knew I felt bad but I did t fully realise how awful it had been till I started to feel better

I was the same OP. I'm not on top of things yet, but the big take-away from the last few months for me is that you really have to speak up for what you need. I'd also suggest getting a print-out of all test results if you don't already have them, and having a chronological list stating date of test, dose you're on, symptoms, test results and ranges mine was inflicted on MN yesterday. Especially if you're going from one doctor to another, you want everyone to have all information to hand.

As an aside if you need thyroxine you get free prescriptions for life for all medication with the NHS.

Waiting - I've just read the NICE guidance on subclinical hypothyroidism for you I am medical but NOT an endocrinologist or a GP.

cks.nice.org.uk/hypothyroidism

My reading is that you are currently in Scenario: Preconception or Pregnant - and I am assuming that your private clinic is managing this according to the guidelines laid out in the scenario.

Hopefully you will get pregnant, have a baby and then be in the happy position of being in Scenario: Postpartum.

For this scenario it suggests 2 options, 1 is monitoring TSH at 1,3 and 6 months and then annually. However the other option is continuing levothyroxine at pre-pregnancy dose.

This is clearly the option you would prefer! How do we get here? Look at Scenario: Subclinical Hypothyroidism. It is clearly in the guidelines 'Consider offering a trial of treatment if the person has symptoms compatible with hypothyroidism'.

I think you are well placed to argue that you did have symptoms compatible with hypothyroidism and your preconception/pregnancy treatment with levothyroxine has constituted the trial of treatment and it has worked - your symptoms have resolved!

Does that help?

Thankyou yes that's really helpful and means I can get my point across better than my current anxious tone of "noooo please don't let me get ill again" !

Thankyou

I am a GP and your GPs decision seems unethical. I would... Change doctors because who wants an unethical doctor but before you go I would make a complaint to the practice and if no satisfactory reply comes back inform them that you would escalate it to the local health group/authority ! If you have a letter from a qualified uk consultant setting your diagnosis and he refuses to provide you with thyroxine you could...eventually die !!! Does he want to fight that one out ?? whatever his local authority prescribing view is, and I suspect it would be to prescribe, he would have to stand infront of the GMC and justify that! We do get a lot of annoying patients who go and get weird prescriptions for "arguably" vague illnesses and you sort of think well if they are going that far off field good luck why should the population pick up the tab BUT hypothyroidism...if you truly are...thats a no brainer !You also get free prescriptions with that diagnosis on the NHS.

There's no need to see a private GP. The treatment you want is available and given on the NHS. You might not even need to change surgery. It's possible that another GP in the same surgery will continue to prescribe for you.

Another one seconding that GPs are terrible at managing thyroid problems. My mum's levels are currently "safe" so they want her to reduce medication - last time she did that a goitre started to grow in her throat. Now every time she goes the doctor nags at her about it. She's agreed to do it but only if her consultant at the hospital (ie. someone with expertise in the area) thinks it's best too, so she's currently waiting for an appointment.

I would tell the GP to stfu and insist on being referred to a specialist at the hospital. Take a letter from your private doctor.

If however... you are in the scenario as described by Wolpertinger above then the GP would be correct to have worries about prescribing until the IVf party is over and he can test your thyroid function. A GP isn't going to treat outside guidelines...private or NHS.

I'm not sure stfu is the way to go, but a second opinion is definitely advisable.

Gps struggle with managing Hypothyroidism because the rules are a little grey at the margin. if you are on a stable dose like goodnighdv above's mum...you wouldn't reduce it ??? If your thyroid isn't functioning why would it "come back toile"....reminds me of a junior house officer pre-full GMC registration consenting one of our patients for a gallbladder removal and reassuring the patient it would definitely grow back healthier...!