x3 denials of levo dose increase - where do I go from here?

[lauraleeds666]

Wondering if anyone can help with practical advice. I have been on levo 50mcg since 1/12/21. My TSH in late Nov 21 was 7.2 and in early March 22 it was 2.3.

I had presented to my GP repeatedly over 2021 with fatigue, constipation and weight gain. After taking levo my fatigue and constipation started to ease and my weight gain plateaued. Things were good for a couple of months. Now the symptoms have started to come back. The fatigue is awful. I am continually exhausted and having to cancel work because I can't function. I know from reading this forum that I need a dose increase. I weigh 73kg so 50mcg is nothing.

I have tried two GPs at my practice who have told me that my TSH is now in range so a dose increase is not possible. Both times I talked to them politely about the NICE guidelines and treated patients symptomatically and not just on TSH levels, which didn't get me anywhere. This morning, I had a long conversation with a private independent prescriber who was reading the NICE guidelines on the phone as we talked. He was sympathetic about my symptoms returning but said that he couldn't give me a dose increase because my TSH was in the normal range and he said "these are the rules I am bound by". He offered that I could do another (private) blood test to see if the TSH level had now moved upwards (as my NHS GP doesn't want to see me for another 11 months) and if the TSH had gone out of range then he would be happy to increase my dose.

I am beyond frustrated. I need to pay to have a consultation someone who will treat me based on my symptoms rather than just TSH and who will be able to privately prescribe me 75mcg. Please could I have suggestions to my inbox? (I know we are not allowed to discuss names on the forum). Alternatively, tea and sympathy in the public replies always welcome

[Buddy195 Administrator]

Which area are you based for an endocrinologist recommendation (via private message only)?

[lauraleeds666 in reply to Buddy195]

I live in Bradford but happy to travel across the North of England to see someone in person or nationally if they accept video/phone consultations

[Buddy195 Administrator in reply to lauraleeds666]

I’ve sent you a pm with a recommendation.

Just checking if have you had antibodies checked to see if your thyroid condition is auto immune (ie Hashimotos).

Also, do you have any recent tests for key vitamins (folate, ferritin, Vitamin B12 and VitaminD)?

[tattybogle]

So . the fact is they don't know for certain what your TSH will be on 75mcg . ( and neither do you )

And if you took 75mcg and your TSH was still in range , they would be forced to say "ok , we have no reason to say you can't be on 75mcg ,because your TSH is still in range... ( and we believe TSH is infallible!) "

So you could just do what i did :

they gave me 50mcg (at my diagnosis of subclinical autoimmune hypo the GP had said to me "as more of your thyroid is destroyed your dose might have to be increased)

I felt improved on 50mcg for a few weeks , but it didn't last.... then i had a blood test after 7 weeks . GP told me "ok , have another blood test in about 6 months."

But i took 100mcg for the next 5 months instead of 50mcg and then had the blood test.

At the blood test i told the phlebotomist i'd actually been taking 100mcg because it made me feel better.

GP saw blood results and said "ok, if you feel better on that dose you can carry on. i'll prescribe 100mcg , but come and have another blood test in 3 months"

that's all i knew at the time... i didn't know what my results actually were.

(i can't remember how come i had enough tablets.. they used to prescribe 3 months back then,, and , and i probably just put in for a repeat when i ran out early , and nobody added up when it was due to be refilled.. this might be a bit more tricky nowadays.... you might have to get devious and 'accidentally leave a packet on holiday' and ask for some replacements )

Anyway , it turns out these were my blood results :

at diagnosis my TSH was 6.8

7 weeks of 50mcg TSH 2.9 ( TotalT4 52%) GP said ' results ok' ... but i increased to 100mcg

5 months 100mcg TSH 2.5 (TotalT4 68%) GP said 'results ok, if you are feeling better on 100mcg, i'll prescribe 100mcg'

However , on 100mcg the initial improvements had only lasted for about ? 2/3 months ..... so straight after the blood test on 100mcg ,i increased to 150mcg and took this until the next blood test and told phlebotomist i'd been taking 150mcg .

3 months on 150mcg TSH 2.7 (TotalT4 71%) GP said . 'oh , well if you feel better , carry on i'l prescribe 150mcg, book another blood test in a year'

I felt pretty good on 150mcg for nearly a year, not '100%' but certainly about 75% better than before diagnosis , and it stayed consistent, it didn't 'tail off' after a few weeks / months like 50 mcg / 100mcg had .

my TSH did eventually go a lot lower than 2.7 , but not until a year later when i felt lousy again and tried 175mcg for a few weeks, but it didn't improve how i felt at all , so had a blood test and TSH was really low 0.001 and fT4 was over range , so GP insisted i went back down to 150mcg and i stayed there for 15 years, with TSH about 0.05 -0.09 ish .. which was allowed at the time because TSH range used to be (0.02 -6)

So until you actually try 75mcg, NOBODY knows what your TSH will do, it might go below range (unlikely )or it might not shift much at all , or it might sit nicely at 1 ...... If they won't prescribe 75mcg , try it yourself first and ask permission later when they've seen the blood tests taken after you've been on it for at least 6 weeks.

~ I mostly talk about TSH results here , not because it's the most important one , but because it is the one GP's are ruled by , and the one they will use to allow or disallow your dose~

IMPORTANT NOTE .. with hindsight , i should have been a lot more cautious and only increased by 25mcg at a time.... and i should have been more open to the idea of reducing dose further than 150mcg .. i did try 125mcg at GP's suggestion for about 2/3 weeks and decided it was crap and insisted i felt better on 150mcg... but i now know 2/3 weeks isn't nearly long enough, and if i'd tried it for 2/3 months i might have found it was better than 150mcg ....... and then i might have spent 15 years on 125 rather than 150mcg... and who know's ? ..... i might have actually felt better than i did for all that time... i developed a problem with 'crashing energy levels the day after physical exertion', similar to ME/CFS at around this same time... and i do now wonder if i was always slightly overmedicated.... and if i was slightly overmedicated for 15years it would have been my own fault because i'm pretty damn sure the GP would not have increased my dose from 50 mcg or 100mcg unless i'd done it myself.... so get yourself an increas by fair means or foul ,, but be careful and be more patient than i was

[lauraleeds666 in reply to tattybogle]

Thanks, this is really useful info.

I just bought levo 50mcg from a UK online pharmacy, all they wanted to see was a photo of my NHS prescription and an online questionnaire about my health. I also bought this afternoon a pill cutter for small tablets. I have a Thriva subscription so I'll be able to monitor the bloods myself quarterly until the next NHS blood test which isn't until Feb 2023. I only plan to increase to 75mcg and see how I get on. If my TSH doesn't go super low by the time we get to Feb and the next NHS blood test then happy days.

[tattybogle in reply to lauraleeds666]

[Lalatoot]

Some folks buy levo from abroad. you could put up a post asking for sources.

[lauraleeds666 in reply to Lalatoot]

Just bought some from an online UK pharmacy at 50mcg which is my NHS prescribed current dose. Bought a pill cutter to make my own 75mcg.

[greygoose]

he said "these are the rules I am bound by".

Another doctor that needs a dictionary! NICE guidelines are... guidelines. They are not rules. Does he know the difference between a 'guideline' and a 'rule'? I suspect he does but doesn't want to admit it. Doctors don't like treating hypothyroidism because they know they're out of their depth. They haven't learnt enough about it in med school. So, they hide behind 'guidelines' to avoid using their brains.

But, it also says in the first paragraph in the NICE (NHS) Thyroid Disease,

Assessment and Management guidelines:

nice.org.uk/guidance/NG145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

So, two can play at that game, quoting guidelines. Quote them back at him. It's his responsibility to make you well!

[lauraleeds666 in reply to greygoose]

Oh completely agree with you but they all seem to think that a move from 50 to 75mcg is going to instantly plunge me into thyrotoxicosis and lead to a massively suppressed TSH !

[greygoose in reply to lauraleeds666]

Yes, I've had that reaction, too. Such ignorance. Well, the only other thing you can do is tell them that you release them from all responsibility, and wish to take charge of your own health and treatment, and - if necessary - even buy your own levo and give yourself the dose you actually need, rather than the one they think you ought to need. That sometimes works.