NHS refusal to prescribe any thyroid medication if going privately and TSH suppression whilst on T3

[Louise1610]

I currently get 50mcg levothyroxine from my NHS GP but I have been supplementing that with another 50mcg levo and 25mcg liothyronine that I source privately. My GP has recently declined to keep providing that 50mcg levo because the local endocrinology department says that I must get all of my medication from one place or another.

My option was to source all of my medication privately or to go through the GP/endo for everything, but that would mean stopping all of my liothyronine and simply taking the 50mcg prescribed so that the endo could see how that impacted my blood results and they could decide whether I do actually need T3. I said that I really wasn't prepared to cut my medication so drastically so the GP has now said that they can't continue prescribing to 50mcg levo anymore unless I agree to their plans. They refuse to agree that I am not overmedicated.

For context, on 100mcg levo and 25mcg lio, these are my latest NHS blood results done on 14th November giving 24 hours since last T4 dose and approx 12 hours since last T3 dose:

TSH: <0.01 mu/L (0.35-4.94)

Free T4: 11.1 pmol/L (9-19)

Free T3: 5.1 pmol/L (2.40-6)

I think my levo result could do with being a fair bit higher, so I've increased my levo to 125mcg (which I was on before I tried reducing to comply with the GP's request) and will recheck my bloods to see if I still need a bit more.

I'm not overmedicated as far I see it. Is it normal for the NHS GP to refuse to prescribe any medication at all in the above scenario? I don't see why they would want me to go back 10 steps just so they can see how unwell I get! The GP also said that it would be fine to completely stop my additional T4 and T3 at that point and retest in 6-8 weeks to see what happened! My T4/T3 levels have never been over the top level.

[GlowCoach Administrator]

I think many of us in this group get T3 prescribed privately and the NHS provides the T4 element. There can often be issues with the GP due to low or suppressed TSH and they will try and force a reduction in Levo in the hope that TSH will increase.

Is this an issue because you are self sourcing I wonder?

Sometimes this can be a post code issue so I wonder which area of the country or county you live in?

Does TaraJR have any onformation that might help?

[Louise1610 in reply to GlowCoach]

I live in South Yorkshire and have had the same issue with different GPs when moving around the county. I think the GP was trying to say that, if the endo decided that I needed T3 after seeing what my levels were after solely being on 50mcg for at least 6 weeks, they could look to prescribe both, but my concern is, after I've been on minimal medication for so long, how long would it take to get even remotely close to the dose I actually need because as long as I'm within the normal boundaries for T4 and T3, they don't care too much about whereabouts in that range I am. And if they prescribe T3, I would likely still be beholden to the TSH and would mean they think I'm overmedicated with just a tiny amount. Which then doesn't help with symptoms.

So even if I accepted their crazy suggestion of coming off most of my meds for an indeterminable time, they will likely never get back to my current levels as they think I'm already overmedicated when in fact I need a T4 increase. It'd probably take 6 months+ to get the same dosage of levo, never mind lio, and I work full time and have responsibilities that I can't just be ill for that long.

I tried halving my T3 dose for several months to see if it made any difference at all to the results and all it did was change my TSH from <0.01 to 0.01 and my T3 went down. At the time, the GP said that reducing my T3 dose by half might not even make a difference to my T3 levels at all, to which I questioned why she thought that, but she had no answer!

[GlowCoach Administrator in reply to Louise1610]

As your TSH has been suppressed for a long time it would take many months, if it ever went back to 'normal' anyway, so dropping to just 50mcg Levo wouldnt work in my opinion.

It sounds like local Endo is being difficult and it will be difficult to please them without making yourself ill.

[Louise1610 in reply to GlowCoach]

I guess it would just give them more ammo to say that T3 isn't needed in that case because if my TSH would remain suppressed regardless but my T3 dropped, it would be a constant merry-go-round of different strengths of T4 prescriptions like when I first started. I got to the point where I would take a certain level of T4 and the T4 results would go over the higher end of the range but my T3 would remain at the very bottom end, but as long as both were in the range (albeit opposite ends), they wouldn't allow my T4 to be any higher, even though T3 was right at the bottom.

So taking T3 alongside T4 (or NDT) was the only thing that raised my T3 levels as well as my T4 to keep them at the higher end of the normal range. If I'm taking that much T4 and T3 now and neither are above the range, then taking much less would lower both T4/T3 results and possibly bring the TSH up eventually, but at what cost of symptoms being worsened. They would rather my T4 and T3 levels be right at the bottom of the range, my TSH be 'in range' and me feel terrible than ignore the TSH for those on medication.

[arTistapple]

I can’t help thinking what madness this is. How come our medics are so out of synchronisation with our needs? It can’t be money in this instance - Levo costs pennies! It must be their interpretation of the ‘guidelines’. I.E your virtually undetectable TSH. This is where the Sh1t seems to hit the fan.

I know it’s like talking to a brick wall when medics come up against this and other thyroid issues. Why is there no comprehension by the medic for the patient? Isn’t there something we could sign to exempt medics who prescribe what we need?

I have been refused T3 because I am ‘too ill’ or it’s potentially too dangerous for me. It’s ironic really, because as far as I am aware, there is no other medication which can do what T3 does. I can’t understand why (short of self medication and the extra stress that accompanies that situation) when lack of T3 is what has created my situation in the first place, cannot be prescribed now, to stop me getting even worse or might even help with some healing.

It stinks of a form of eugenics to me. Particularly aimed at keeping women in ‘check’. We don’t have the brain power required to deal with such things. Ha! I say women here because the bulk of thyroid patients are women. Perhaps if more men suffered it might be different.

She said waspishly.

[Louise1610 in reply to arTistapple]

You're right - it's the TSH that is the be-all-and-end-all. In the past, that's the only test they've done and I've had to request that they do the T4 and T3 levels to check those. I have a feeling that this is an inherited situation of T3 being prohibitively expensive in recent history to the NHS with the lack of competition and because CCGs have constantly being telling doctors not to prescribe it, the whole sentiment is now, you don't need it, it's bad for you and will always point to the 'studies' that prove their side, but will never look at whatever you refer them to. People are more than a 'number in range'.

I completely sympathise with you on that. It's been so expensive to go privately in the past and to get T3 that way and whilst I've been privileged enough to be able to afford it, there are many that can't and then will be forced into poor care because of it. I'm in a different situation now after divorcing and I need to keep a much closer eye on the costs.

You are right though. As with many similar things, if more men (in particular those in decision-making power roles) suffered with these conditions, it would be taken more seriously. Endometriosis and the like, for example! If they spent less time on fire-fighting and more on prevention, it would be a much healthier situation. Take my recent iron-deficiency anaemia situation - I told them for quite a while that my iron was deficient and it just kept going down and down and down even though I was taking various iron tablets. But no, until my ferritin was below 10 (range of 10-250 when NICE guidelines say absolute deficiency is below 30), they wouldn't do anything about it. And now that I've finally had an iron infusion, I must wait until my levels are that low again before they will consider doing anything - even though they know that it will just be a matter of time and getting more unwell as it gets lower.

[arTistapple in reply to Louise1610]

I don’t think they even take the time or effort to project forward their stupid actions. In our practice there is a huge display saying “We are on your side” and then go on to talk about how much the government pays per annum per patient. It just does not ring right for me.

Then you go in for your long awaited appointment and are almost immediately informed how the time is limited and the service is under great pressure. So much more important than listening to the patient.

It’s certainly no longer a service - if it ever was. I have now lived long enough to look over it for many decades. As far as I can see the only thing that has really changed is the level of many patients trust. We no longer consider them GODS.

I should think that is disappointing for them but it’s devastating for us.

[Louise1610 in reply to arTistapple]

You'll be lucky if you get the whole 10 minutes that's booked for you! And even if you do, half of the time they give the appearance of, 'how quickly can I get rid of this patient?'. It's not relevant to your appointment to tell you that it's busy and you must give all relevant context in a few minutes and the GP has a few minutes to decide what to do.

My mother will be 70 next year (if she gets there) and her conditions have been mismanaged for at least 50 years. She has medication piled on over the years for various symptoms that are actually due to her main conditions being mismanaged, but she agrees to take them because she believes that it's in her best interest and doesn't want to inconvenience the doctor. She's now facing end-stage liver, kidney and heart failure and COPD due to the amount of unnecessary meditations over those years. As someone who constantly questions why a medication is needed and blood test results etc., it's difficult to watch, but she makes her own decisions. I can only imagine that this is the case with millions of patients who expressly trust that their doctor only has their best interest at heart. The amount of money spent on my mother's uncontrolled symptoms and secondary conditions when they could have managed her primary conditions appropriately at vastly less cost is bonkers.

[arTistapple in reply to Louise1610]

I loudly agree. I am 70+ and I see so many of my friends following this path. I have myself on occasion. Many of them think I am too loud and uncomfortable to be around now. I feel distinctly uncomfortable being around me. I would say this whole process has changed my personality as well as my health.

It’s all BONKERS.

[Louise1610 in reply to arTistapple]

It's better to be loud and healthy than quiet and slowly wasting away in unnecessary misery! People do think you're mad when you say that the doctors and specialists don't agree with you and that they don't understand what they're meant to be specialists in. How could it ever be possible that an unqualified person could know more than a specialist with so many years of study and education in those topics? It is bonkers!

[Zazbag]

Get a new GP who actually listens and ask them to refer you to a T3-friendly endocrinologist (contact Thyroid UK for the list of these endos) SlowDragon could you give her the email address for this? Don't waste another second fighting against these people. Time to move on. Better doctors are out there!

[Louise1610 in reply to Zazbag]

It's difficult to find the needle in a haystack. In the years since being diagnosed (15 years ago now), I've seen possibly close to 100 GPs and endocrinologists and even 1 that was meant to be T3 friendly. Anything to do with thyroid and I struggle to find a sensible one. It'd be interesting to see the list though so that I can cross-check any local ones that I haven't seen!

[Zazbag in reply to Louise1610]

Keep trying. I found a good GP and a decent endo after 8 years of awful ones

[serenfach]

Say the word "hormone" to any man, and they turn pale. Say it to a doctor and their brain thinks "mad woman".

When there was a shortage of HRT I warned the GP that he would have a whole surgery of sweaty red faced angry women. He turned as white as a sheet and said he would sort out a supply, and he did!

[Louise1610 in reply to serenfach]

My latest GP was a woman and it was no different a situation. She spoke over me, refused to accept anything I said and just reiterated different stock blurbs about TSH means over-medicated and it could cause damage, etc. I said it's not the TSH that causes the issue, it's when T4 and T3 are over that is an issue, but she wouldn't accept it!

[arTistapple in reply to Louise1610]

Shockingly, sometimes these ‘pseudo’ men are even worse than the men themselves. They have to put on their armour to deal with stuff that just does not make sense. They are not naturally privileged members of the ‘All Men Club’ so they have to work harder at it, by being …., harder. My female GP and I have just parted ways because of her ‘tender’ sanctimoniousness. I have seen lots of women in other workplaces act similarly. However, I guess it’s even more shocking to come across this behaviour in a supposed ‘caring’ atmosphere.

[Louise1610 in reply to arTistapple]

Tender sanctimoniousness is absolutely the right phrase! I honestly don't envy anyone working in the NHS and realistically they are overworked, underpaid and get way more stress because of it, but it negatively impacts the good continued health of individuals and have to firefight instead of being proactive.

It's difficult when they don't believe you at first instance and can't believe that you might know your own body and have done your own legitimate research, then send you for a tonne of (sometimes seemingly random) tests and referrals to the hospital for scans, tests, surgeries, and then end up confirming what you told them in the first place. They waste more money trying to prove you wrong than if they just did the one test or surgery that would easily confirm the issue early on. Then they give you tablet after tablet for symptoms instead of fixing the root cause with 1 medication and the combination of those tablets then cause other symptoms. It's a horrible hole to get stuck in and so many people take so many medications for problems they wouldn't have if their primary condition was actually managed properly.

I also tend to have my thyroid targeted as the cause of all of my issues, rather than them think that it's a separate problem causing the symptoms. Before I got diagnosed with hypothyroidism, they were sure that my depression was the cause of my many symptoms! If I have any symptoms at all, it MUST be my thyroid and aha, the TSH is suppressed, therefore that's the issue and they look no further! (eye-roll!).

[arTistapple]

I could not agree more with what you say. However I have opposite situation. It’s never my thyroid. They don’t understand the simplest explanation. Undiagnosed and poorly treated hypothyroidism is the root of many much worse conditions - as you previously implied!

[Regenallotment Ambassador]

I think a firmly worded letter that you would be very willing to trial your 100 or 125 mcg T4 dose from the NHS and would be happy to continue testing at 12 week intervals provided they focus on FT4 and FT3 levels and your symptoms. The justification being your pituitary hormone TSH will not be an accurate reflection of thyroid replacement status as you have a private prescription for T3.

I sense I am about to enter a similar argument, could only get a 14.20 appointment and GP insisted annual bloods ASAP. 😫

I will go in hard with research papers. We are entitled to refuse a dose reduction, I’d need to be signed off work.

Can your private Endo who supplies T3 write to GP /NHS endo to explain low TSH is expected?

[Louise1610 in reply to Regenallotment]

They will only continue to prescribe any T4 medication if I stop taking T3 altogether and wait an indeterminable amount of time for my bloods to show them that I need T3, but as long as my TSH, T4 and T3 were in range, even if T4 and T3 right at the very bottom of the range, they would see that as no need for T3 and I'd be in a worse situation than now because of the months I would feel like absolute rubbish and struggle with my full-time job.

I have no idea what would happen if I mentioned that they can't reduce my dose if I don't agree with it as I've been told many times that they are the ones that are prescribing it, so if they aren't happy with the results, then it's up to them, not me.

I would never do bloods without warning as they will be inaccurate depending on when you last took your medication. They should never ask because even if you're on something like biotin, it will impact your results so they aren't accurate and decisions would be made based on the wrong results.

I originally went to a functional practitioner who specialised in thyroid care (and could prescribe NDT or T3 as needed) for quite a while, but it got prohibitively expensive over time, and especially after I got divorced and only have my salary now, so I self-source separately now and have used the NHS to check bloods and if needed, pay for tests as and when I can't get the NHS to do them. That would cause a whole new level of unfounded concern from the GP that I don't really want to deal with.

I hope your appointment wasn't too bad!