Doctor refusing to increase levo, says I should not have been put on it in the first place (it was "against his better judgement")

[TheSnufkin]

Argh, I've just had an incredibly frustrating and upsetting phone consultation after 8 weeks on 50mcg of levothyroxine. I was on a starter dose of 25mcg for the 8 weeks before that.

Current/past levels

TSH level (range 0.570-3.6)

3.169 mU/L 13 Nov 2023

1.841 mU/L 21 Sep 2023

3.730 mU/L 25 Jul 2023

2.128 mU/L 3 Jun 2023

T4 levels

Serum free T4 level (range 7.9 - 14.0)

8.6 pmol/L 13 Nov 2023

8.7 pmol/L 21 Sep 2023

7.8 pmol/L 25 Jul 2023

7.4 pmol/L 3 Jun 2023

As you can see my TSH has increased quite a lot between September and November and my T4 is starting to drop. I had 3 weeks of feeling quite good once I increased to 50mcg (and my hair has started to grow back), but a lot of the symptoms I'd been having have started to return over the past couple of weeks. Bone tiredness, itchy arms and nerve/joint/muscle pain, lack of concentration and just so much fatigue.

The GP's response to my request to increase the medication was ridiculous. He said that because my results are "normal" then I don't need an increase, and when I countered this saying that people taking levo should be in the middle of normal not right on the very edge, he then said that he and the other GPs in the group (he's very new) "didn't think my problem was hypothyroid, that it was something else" (they keep pushing me to accept that I have CFS when I know it's to do with thyroid and iron deficiency which I'm treating myself).

He then astoundingly said that it was against the other GP's better judgement that I was being medicated for hypothyroid at all.

When I pointed out that my TSH was nearly out of range, he then said that blood tests were just a snapshot and he needed to go on how I was feeling as well (whist ignoring that I'm now feeling worse after a period of feeling better and the results show why this is).

I'm utterly astounded at this and really upset and angry. I saw a bit of light at the end of the tunnel and now the door has been slammed shut on me feeling better.

How on earth can I persuade them to increase my dose? I'm feeling so let down by my GP practice. It's so hard to fight this

UPDATE 10 minutes later...!

I've just had a message from the surgery to say that the new GP spoke to my named GP and she agreed to put me up to 75mg. Bloods to be taken in 3 months. I am honestly so confused about what's going on at my surgery, but just relieved that they are at least trialling it.

[TheSnufkin]

Can't see how to edit the post, but I've just had a message from the surgery to say that the new GP spoke to my named GP and she agreed to put me up to 75mg. Bloods to be taken in 3 months. I am honestly so confused about what's going on at my surgery, but just relieved that they are at least trialling it.

[Charlie-Farley in reply to TheSnufkin]

Ok TheSnufkin 🤗

What has happened is your GP doesn’t know what they are doing and the other GP just might have an idea! 🥳

To be on the safe side and to counter any more mismanagement you need to get enough knowledge under your belt to counter any attempts to under medicate you in the future.

There is nothing better than other people’s lived experience and a few well chosen sources to get you started.

Have you seen tattybogle ’s compilation on TSH in the pinned posts AND there is one there I have written on the NHS. And NICE guidelines the useful bits. Also I had a battle with ignorance at my local surgery and wrote my bio as a case study for others. I also have a few posts on things I did getting to full therapeutic dose.

Just get a step ahead, but the fact the other doctor has intervened is hopeful - just be prepared. There are some really poorly trained doctors treating lab work rather than patients. If you can afford to get a private test done to keep an eye on your levels because FT3 and FT4 levels are the most important.

Also are you taking your iron well away from your levothyroxine? Iron can interfere with other supplements and medication.

[TheSnufkin in reply to Charlie-Farley]

Thanks for all this information, I will go and read everything you've suggested here as I need to up my game. I do get the feeling that my GPs think I'm an irritating patient as I'm insistent that what is wrong with me is *not* CFS and as soon as I'm labelled CFS they can leave me to rot in a corner as there's no treatment for it.

I'm now thinking that I should probably get a private test, although I do worry that even if it finds FT3 is an issue, that my GPs won't take that into consideration. Whilst I can afford a test, I can't afford ongoing private prescriptions and consultations.

Re levo, I take it when I wake up to go to the loo in the middle of the night (usually between 3-5am most nights) as I know it's very sensitive to interactions. I then take the iron mid-morning, so there are a good 5 hours between taking them.

I have to take a lot of other medications (some more than once a day) for non-related conditions such as severe asthma with fungal sensitivity and other allergies, so I'm finding it hard to fit everything in, and middle of the night seems to be the best solution. I'm attempting to follow the iron protocol, but there is no way I can take iron on an empty stomach, it just doesn't work for me!

[Charlie-Farley in reply to TheSnufkin]

Hi again

If you get a test with vitamins and antibodies you will have a better idea of how to move forward - Monitor my Health, Blue Horizon (I generally use the latter) 🤗. I do the when I get up for a wee protocol- unless I’m having a bloody test. 😂👍

[TheSnufkin in reply to Charlie-Farley]

Glad I'm not the only one who does the "get up for a wee" protocol 🤣

I now mark my blister pack with days of the week so I can make sure I've taken it in the middle of the night as sometimes I dream that I've taken it and haven't and a couple of times I've taken it twice as I've woken up for a wee twice.

[Sparklingsunshine in reply to TheSnufkin]

They dont know their arse from their elbow, at least you got your increase and hopefully will continue to make progress. Your clearly needed one looking at your results. Well done for standing your ground 😄

[TheSnufkin in reply to Sparklingsunshine]

Thankyou. It's so hard to do even though I'm pretty articulate and able to advocate for myself!

[greygoose in reply to TheSnufkin]

Probably new-broom syndrome. They feel they just have to do something to make their presence felt, and justify thier existance, even if it's the wrong thing! This GP obviously knows next to nothing about thyroid - totally ignoring the obvious that the problem is your TSH is not reflecting your FT4 level - if he even knows that the TSH should reflect the FT4 level! (By the way, what time was the blood draw for this test? And had you left a gap of 24 hours between your last dose of levo and the blood draw?)

I think I would have asked him who told him that his judgement was better than anyone else's?!?

[TheSnufkin in reply to greygoose]

Yes 24 hour gap and blood draw was 8.30am with an empty stomach apart from having drunk a glass of water (I have to do this otherwise they can't get blood out of me!!).

[greygoose in reply to TheSnufkin]

Yes, yes, you shouldn't allow yourself to get dehydrated. So, as I said, the TSH is not corresponding to the low FT4, but doctors are so ignorant they believe that the TSH tells them 'all they need to know'. This is a good example of how it doesn't! But, if you have a TSH-obsessed doctor, it's hard to get diagnosed, sometimes. Thank goodness your named GP has more sense!

[waveylines]

Ahhh sounds like new doctors arrogance with ignorance!! And when you didn't bow tail to him he used the ultimate of the whole GP practise think you dont have hypothyroidism but CFS/ME See it for what it is bully boy tactics not the truth. Complete lie. I was once told I'd die in 20yrs if I didnt take a statin.... Load of rubbish, never mind I'd be 87 in 20yrs in any case and given my medical history that would be a great innings. Clearly you worried him enough for him to consult with your named GP who obviously thought otherwise. At least he had the sense to do this & let you know.... though an apology would've been appreciated!!Ignore him and avoid him if you can in future.

You definately need the increase!! Stupid man. Just like the expression, "Stupid is as stupid does!" (Forest Gump)

Big hugs & well done!!

[TheSnufkin in reply to waveylines]

Thankyou! And this obsession with longevity, surely it should be maximising quality of life, not quantity?

Don't reckon I'll get an apology ever. I'm going to make sure I never see him again though.

[waveylines in reply to TheSnufkin]

Yes avoid him like the plague. He's not worth your upset. Now celebrate. Your GP sounds far more understanding and willing to work with you. Stick with her. Well done for standing your ground.

If it's any consolation another time when I stood my ground another GP said I'd failed my diabetic test.....& he'd retest in 3months. When I all shocked said asked why he was leaving it he said, Cos we've spent too much bloody money on you already! Copy of blood test results revealed I wasn't diabetic at all, test result was perfect and I was never retested.So there you go.... Expect the dramatic with some idiots. 🙄

[Sparklingsunshine in reply to TheSnufkin]

My late mum passed away last Xmas aged 93, the last 3 years were horrendous, she was virtually blind, profoundly deaf, severely depressed, cognitively impaired, so much so she was refusing to eat, drink or accept personal care, she had no quality of life and just wanted to die.

You'd be rightly prosecuted for putting an animal through that. I certainly dont want to live that long if it means existing like that.

[TheSnufkin in reply to Sparklingsunshine]

I'm so sorry your poor mum had to endure that. I agree, it's inhumane, I wouldn't allow my dogs to suffer like this why are peopme expected to suffer when there's no hope for improvement.

[DippyDame]

Another GP who doesn't understand the basics of what is a very common condition...

Yet, he has been let loose to treat the unwell

At least his conscience gave him a kick and he sought advice from your named GP...maybe a lesson learned!.

And....cart before horse!!

Hope you feel better soon.

[TheSnufkin in reply to DippyDame]

I went straight into the consultation asking for my dose to be increased to 75mcg. I think he was just expecting to tell me that my levels "were fine" and for me to accept this as fact and go away. I think the only reason he went to speak to the other GP was because I asked who I should go to for a second opinion on this. GPs must detest patients that are informed and prepared to argue.

[Sparklingsunshine in reply to TheSnufkin]

I cant help feeling a lot of doctors practice defensive medicine these days, they are so worried about breaching the rules, guidelines etc and are so scared of falling afoul of the GMC that they just stick rigidly to the script. Unfortunately patient care and empathy suffers accordingly.

[TheSnufkin in reply to Sparklingsunshine]

But they hand out antidepressants and statins as if they are sweets. That's what I don't understand. A 25mcg increase is not going to make me hyperthyroid when I'm hovering on the edge of hypo even whilst medicated. Why do they get so upset about prescribing levothyroxine? I honestly don't understand what the problem is. The side effects of antidepressants are significantly more serious than a graded increase in levothyroxine which is well monitored.

Does anyone know where the reluctance to prescribe levothyroxine comes from?

[DippyDame in reply to TheSnufkin]

Ah....good tactic!

I copied this a couple of years ago it was so apposite!

New Doctor

[TheSnufkin in reply to DippyDame]

Oooooof, there is far too much truth in that meme you posted.

The weird thing is that GPs can't seem to understand why people with long-term health conditions know a lot about them. It's in our interest to be well informed as if we don't care for ourselves, no-one else will.

[HealthStarDust]

May I ask what is meant by you when you say you have bone tiredness?

[TheSnufkin in reply to HealthStarDust]

Feeling like I'm dragging my body around, having to go to bed for an hour or more at lunchtime, having no energy and just feeling like my bones are made of lead and are too heavy for me to lift. The amount of effort just to get up, get dressed and clean my teeth in the morning just feels insurmountable.

[HealthStarDust in reply to TheSnufkin]

Ah. Not pain in the bones then?

I hope it gets better.

[TheSnufkin in reply to HealthStarDust]

No not actual bone-pain, sorry for the confusion it's just a figure of speech I use.

And thanks, I really hope I improve on the higher dose.

[HealthStarDust in reply to TheSnufkin]

Hang in there.

[FallingInReverse in reply to TheSnufkin]

I hate this symptom so much. I describe it as “cement in my legs.”

Before I was diagnosed I thought I was going lazy… was training for a marathon and just couldn’t. As I get my T4/T3 better, I have a good day every once in a long while … and I go for a run! And those days I wonder what all the fuss is about, like, mind over matter. In those moments I’m always surprised at how easily I can forget my troubles. Then I dip again for weeks and weeks and months and months and in those moments I know that there is no physical way I could run or take a set of stairs or exert myself in any way.

At least I know now I’m not lazy. Trapped in my own body shut down without enough T3. But still have hope. I’m still undermedicated. But we’ll see. One day at a time in the meantime.

[DippyDame in reply to HealthStarDust]

I describe it as trying to wade through treacle!!!