WWYD? - GP refusing to increase levothyroxine

[MiniMum97]

Quick summary before my question:

I was diagnosed with hypothyroidism (unknown cause as never tested positive for hashis abs - many, many tests!) in May 2017. Then started getting hyper symptoms Dec 2017 and was eventually diagnosed with Graves in about May 2018 (positive TSI ab test). Went on carbi for a bit, then taken off, left for a while to see what my thyroid did. Felt very underactive but T4 was right at bottom of range so endo said - your thyroid is all fine, bugger off back to your GP to see what else is causing your symptoms. Managed to persuade GP that it was likely to be my thyroid and she cautiously put me back on levo 25 mcg which she then increased to 50mcg about 2.5 months ago. At my 8 week check, my TSH was below 1, but T4 still below half way through the range - detail below - and she refused to increase. I left it a few weeks to see if I still continued to feel unwell, which I do, so just wanted to get thoughts on WWYD re my next steps.

OK so that's where I am. I am on 50mcg of levo and feel better than when on no levo, but I still have the following symptoms: exercise/exertion intolerance; days when I still feel fatigued and can't do much at all, everyday I have to limit what I do and take lots of rest breaks; dizzy spells; dry skin, digestion problems - indigestion, gastritis/constipation/diarrhea cycling, stomach pain, bloating; breathlessness, constant bugs/raised glands/sore throats; muscle pain; low mood.

My last thyroid tests were as follows (09/04/2019):

Serum free T4 level 14.6 pmol/L [12.0 - 22.0]

Serum TSH level 0.40 mu/L [0.27 - 4.2]

My previous test on 25mcg of levo for @6/7 weeks (31/01/2019) was:

Serum free T4 level 13.5 pmol/L [12.0 - 22.0]

Serum TSH level 2.43 mu/L [0.27 - 4.2]

My last test when on no levo (11/12/18) was:

Serum free T4 level 11.7 pmol/L [12.0 - 22.0]

Serum free triiodothyronine level 4.2 pmol/L [3.1 - 6.8]

Serum TSH level 1.81 mu/L [0.27 - 4.2]

I think I need an increase and would like to get my T4 and T3 higher in range to see if that makes me feel better - the last time I felt well was in June last year when my T4 and T3 were towards the top of the range.

Do I:

1. Self medicate

2. I have identified 2 endos and a GP who I could see privately who may be receptive to my situation. 1 endo is local but the other 2 require travel. The local endo is more of a gamble. The other forum members have indicated that the ones I could travel to are not concerned about a suppressed TSH but I am not sure about the local one - he "advertises" that he is interested in patients who have conversion problems (which I don't have, going by my earlier blood tests (not listed above)) but this suggests he at least has some knowledge about the thyroid and is willing to consider T3 potentially, so may be more open minded and knowledgable than other endos/GPs.

I am fed up of being at the mercy of the person with the prescription pad and would like more autonomy over my own health, but am worried about self-medicating because of potential supply issues, problems if I am admitted to hospital, concerns about not being supported by doctors who then put all future problems down to self medication!

But I have no guarantees when seeing these other practitioners whether they will help me - waiting to see them will cause further delays in getting on the right treatment, and there is also the ongoing pressure of going to see them on an ongoing basis due to needing to travel some distance. Plus I may just be throwing good money after bad.

WWYD?

[Aurealis]

I’d pick up your next prescription and increase your dose slightly. Return to GP and ask for more. Show GP how much better you are and hopefully GP will then increase dose?

[MiniMum97 in reply to Aurealis]

Hi I've already been back to GP after last test - she said no increase and retest in 3 months. I explained that I was feel better but still had symptoms, and that I last felt well when T4 and T3 towards top of range, and that I wanted an increase. She is going by TSH unfortunately,

[Hay2016 in reply to MiniMum97]

Send your Dr the new pinned paper by Midgley, J et al “Time for a reassessment of treatment of hypothyroidism” talks about how reliance on TSH isn’t fabulous.

[MiniMum97 in reply to Hay2016]

Thanks for the paper - I'll have a good read.

[greygoose]

Me, I'd self-treat, no question!

[MiniMum97 in reply to greygoose]

Thanks greygoose, can you elaborate on why that's the route you would take?

[greygoose in reply to MiniMum97]

Simply because I know more about it than the majority of doctors and object strongly being told what to do by people who know less than I do - especially when I know it's going to negatively impact my health. Why should I tolerate them making me ill when I can make myself better by myself?

[MiniMum97 in reply to greygoose]

Thank you, that's exactly how I feel - Are you worried about supply issues and have you had any issues dealing with the med profession because of your decision to self-medicate? Did you tell your primary care doctor that you are self-medicating (I think you are in France if I remember rightly?)?

[greygoose in reply to MiniMum97]

Yes, I'm in France. And, I don't have a primary care doctor at the moment. Mind retired and there's no-one to replace him - we have a bit of a situation, here, at the moment. But, I wasn't self-treating last time I saw him.

I am very worried about supply issues. It's a very uncertain future. But, I just take it one day at a time and hope for the best.

I have had a hell of a lot of issues with the medical profession, ever since I can remember, and - to be honest - I hate them all. I have never seen a doctor that didn't make me worse, rather than better - and I've seen a lot of doctors. And, if I never see another doctor in my life, it will be too soon!

[MiniMum97 in reply to greygoose]

I am with you there - have completely lost faith in the medical profession. I find most of them arrogant, if not rude, dismissive and ignorant. If you don't know the answer to a question they just seem to make something up. So unprofessional, if it were any other profession they wouldn't get away with it. I work as an adviser, working with the public, and if I acted the way they do, I would be sacked!

[greygoose in reply to MiniMum97]

Absolutely agree with you!

[SlowDragon Administrator]

What are your most recent vitamin D, folate, ferritin and B12 levels

What vitamin supplements do you currently take?

You need to test TSH, FT3 and FT4

Have you had BOTH TPO and TG thyroid antibodies tested

Usually if TPO antibodies are negative, NHS refuses to test TG antibodies

Were these tests all done as early as possible in morning and fasting and last Levothyroxine dose 24 hours before blood test?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

[MiniMum97 in reply to SlowDragon]

Hi

Thanks for replying - I am on it with the vitamin testing and supplements (last tested Dec), and always have my thyroid tested in early morning, on an empty stomach, 24hrs after levo. I do have a problem with lowish ferritin (can't get it up whatever I try) but I had this last June when I felt really well and thyroid hormones were towards the top of the range. I have not been able to take supplements consistently in last few weeks due to gastritis on and off but have not noticed any change in symptoms.

I have had both TPO and TG abs tested numerous times.

I am about to retest thyroid and vits to check where I am at and prior to my next step whether that's self-medicating or seeing another endo/GP.

Thanks for your post.

[SlowDragon Administrator]

Found these vitamins results from 4 months ago

Your ferritin far too low

healthunlocked.com/thyroidu...

Have you been working on improving this?

Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption

FERRITIN and hypothyroidism

healthunlocked.com/thyroidu...

drhedberg.com/ferritin-hypo...

restartmed.com/hypothyroidi...

Post about iron supplements

healthunlocked.com/thyroidu...

Recommend you get vitamin levels retested using thyroid plus ultra vitamin test - this would double check Thyroid too

[MiniMum97]

See post above. Tried loads of things to improve ferritin, but not been able to.

Regardless of my ferritin, I still think my T4 is too low. In addition when last diagnosed with hypo I was on 100mcg - not sure why I suddenly only need 50! My heavy periods, which went away when on a higher dose of levo, will not be helping my ferritin either.

[MiniMum97]

To be clear, in last few months I have been taking iron supplements with vit C prior to gastritis. Have also been trying l-lysine as this has been shown to raise stubborn iron levels. Not retested yet but will be doing so in next few weeks.

[MiniMum97]

I am not holding out much hope of increased ferritin though as my periods have been super heavy.

[SlowDragon Administrator in reply to MiniMum97]

Heavy periods are classic sign of being hypothyroid

Suggest you also consider getting cholesterol tested

If this is high this also suggests hypothyroid too. Doesn't mean you need statins

nhs.uk/conditions/statins/c...

[MiniMum97 in reply to SlowDragon]

Yes I know - my periods are always heavy when underactive. My cholesterol was tested not long ago and was on the high side - am aware of the links between high cholesterol and hypo.

[SlowDragon Administrator in reply to MiniMum97]

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

You are likely to have to go above GP

[MiniMum97 in reply to SlowDragon]

Hi Yes already have that list. My endo was off the list. He was great diagnosing my graves but was also the one that told me my symptoms were not thyroid related as T4 was just in range. I have the details of 2 private endos and a private GP who might be more helpful but that comes back to my OP - do I chance paying more money and delays on seeing if any of hear Ned profs will/can help me, or just self medicate?

[MissGrace]

I’ve posted the below before a few times so apologies if you’ve read it already, but just in case it helps - I’m on T4, you might find the comments about hashimotos and over-medication useful in your battle to be well.

I see an endo privately which I know isn’t an option for everyone, but he’s very understanding and is a thyroid specialist.

Last time I went to see him my blood results showed my TSH is now plunging into the nether regions, my T4 and T3 are about 50-55% of the way through the range and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase Levo despite the fact that my TSH will go lower and it is already below the reference range.

If you have been severely hypo or hypo for a long time then TSH is no longer reliable in the way it reacts when you take T4. My endo (a thyroid specialist) has said to me ‘Let’s forget about the TSH, it’ll probably never recover.’ Magical words!

What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, which is more complex to treat as it is difficult to stabilise your levels. GPs just treat it in the same way as underactive thyroid but it isn’t the same. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically the pituitary loses the plot and TSH tends to go low. Also if you have been hypo for a long time, the feedback loop doesn’t work properly anymore. We also know that you can be taking lots of T4, but if you don’t convert enough of it to T3, you won’t feel any better.

My endo also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need to take more of the synthetic T4 stuff than we would have to produce of our own - even more than the normal range for T4 for some people to be able to make/convert into adequate active energy and therefore to feel well. This is the reason the T4 and T3 test are so important rather than the TSH.

The combination of hashimotos and synthetic T4 creates a perfect storm. Your pituitary goes AWOL and you may struggle to do anything with synthetic T4. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges and a low TSH is fine if there are no signs of being over medicated e.g. high FT3, heart racing, tremor etc.

There are physical tests your doctor can do to check if you are over-medicated - pulse rate, check the heart rhythm, extend your arms and see if there is tremor in the hands etc. If she hasn’t - why hasn’t she? She can’t just reduce your meds on a figure and not actually look at you! You can take your temperature and heart rate on waking every morning and record these to show your doctor as proof too. Despite my TSH being low, on waking my temp is usually 35.2 and my heart rate 56! He has to check you are over-medicated, not just assume you are.

She should be investigating why you are not symptom free and feeling better despite the stupid TSH reading. Not responding to a piece of paper rather than a patient. She needs to turn away from her computer and look at you.

Do battle - and good luck. Tell your doctor to dose the patient not the blood test. If you were over-medicated, believe me, you would know. When I was over-medicated it was scary, heart racing and pounding if I just stood up, feeling nauseous etc- you would want to reduce if that was the case! 🤸🏿‍♀️ 🥛 #fightforyourthyroid

[MiniMum97]

Hi MissGrace Thanks for posting! I have seen a similar post before - in fact one of the endos I refer to in my OP is yours! We PM'd a couple of weeks back and I have just realised that I didn't reply to you - sorry I really though I had - thyroid brain strikes again!! Apologies and thank you for both your post and PM. There are good doctors out there it seems. x

[mintchocolatechip]

Hello there, could you please PM me of the private GP you're seeing in Brighton/Hove area? I suspect that I also have hypothyroidism, but in need of a good Dr who would actually listen and response appropriately instead of dismissing my concerns. Thanks XX

[MiniMum97 in reply to mintchocolatechip]

Hi I’ve PM’d you.