Titration of blood tests newly diagnosed

Hello... new diagnosis hashimotos in march , started on 50mcg thyroxine 18th march, repeat bloods in 3 months . Today I asked my GP for rationale for the three months having asked for a immediate review which she refused saying that the levels would not show up with a test now which I challenged the GP didn't give me a definitive answer, and said she would refer back to the prescriber who was in fact the practice pharmacist, she asked if I had a consultant endocrinologist..nope this is the first doctor I've spoken to , not to undermine the pharmacists skills but I'm feeling a tad neglected here .. on a positive she agreed to the vitamin b12, folate, ferritin and vit d bloods ..can I ask to be referred to endocrinology and would this make any difference to my pathway? Thank you 😊

[Jaydee1507 Administrator]

You can ask to be referred to an Endocrinologist but honestly you're probably best sticking with your GP as many Endo's are diabetes specialists and really no more help than your GP can be. They may also refuse the referral if they don't think they can do more than your GP is currently as hypo is usually dealt with by GP's.

Probably best thing to do is find a more helpful, open minded GP who will do your bloods before 3 months (6-8 weeks from start or increase of dose).

Negotiating and working successfully with the NHS system is a good thing to learn that will stand you in good stead for the rest of your life. Don't get stuck with a doctor/pharmacist that isn't giving you the right answers. You need to be persistent (nicely!) and try a different tactic/person next time.

When you have the results for the vitamins start a new post.

In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception. This makes access to blood results so much easier where possible.

[Hidden in reply to Jaydee1507]

Thank you, I do have complete access to my records so that isn't an issue, advice noted re endocrinologists..I will persevere with the GPs I am wondering what the rationale was for three months? Coming from the pharmacist she must have one ? I think given the lack of communication on diagnosis other than yep definitely autoimmune thyroiditis..I'm feeling a bit vulnerable regards the treatment plan .

[Jaydee1507 Administrator in reply to Hidden]

I believe 3 months is what is mentioned in the NICE Guidelines but in the BNF it says 4. Actually 4 would be too soon and 3 months is a long time. I know when I initially began treatment I was told 3 months but then managed to negotiate (this is an art you will need to learn) the 6-8 weeks which is when you will get an accurate result.

There was a recent post where someone was asking the same question. healthunlocked.com/thyroidu...

For a life long diagnosis GP's really don't have the time, actually neither do they have the knowledge to give to someone who is newly diagnosed. You will find that this group gives you so much more information than your GP/pharmacist will ever do.

Perhaps you could join Thyroid UK which is a very supportive organisation that this group is run by. They produce newsletters, run this group, local support groups, lots of information on their website.

thyroiduk.org/

[Hidden in reply to Jaydee1507]

Again thank you..yes this group is an excellent resource and support network, I considered myself fairly sturdy emotionally until this diagnosis, the implications of quality of life are huge and have left me feeling vulnerable I know GP's and health care professionals have limited time and energy, and I respect that, and I'm more than happy to work with that to a certain extent but I need the why of something..my conversation this afternoon with the GP was almost like because I say so..I'm quite used to negotiation but having zero energy and foggy head I'm relying on the health care professional doing what it says on their badge and within their job description and supporting me. Argh well little ranty over ...best foot forward..🦄

[Jaydee1507 Administrator in reply to Hidden]

Do rant away. There's plenty to be disatissfied with regarding thyroid treatment.

There's plenty of the 'because I said so' brigade out there but if you seek you wil find a few more open minded ones.

I know its awful that we should be having to do such things when we are at our least able but thyroid treatment is like that all the way through unfortunately.

Sounds like you need to find a more open minded GP.

[Hidden in reply to Jaydee1507]

Mmmm 🤔 funnily enough this was a different GP in the practice, not spoken with her before, I've seen and spoken to four GP 's in the last year for investigating gynecologic issues ( turned out to be the thyroid) anemia and now thyroid...I suspect I need to have a try of the remaining two ..all seem to have the same style ...I'll persevere..if I was of a mind I'd begin to wonder if I was the problem 😂 all I'm asking for is clear rationale and evidence based medicine..and a clear understanding of my condition. Anyhoooo...

[greygoose]

To be perfectly frank, it might make things worse. 99.9% of endos are diabetes specialists who think they can treat thyroid but can't. I know this is a gross generalisation, but I've never met an endo that knew what he was talking about, and I've seen quite a few. So, you would have to research your endo carefully before committing to them, and make sure you see that particular endo, and not just any old member of his team.

On the subject of the three months, that is a bit exaggerated, normally one would suggest 6 - 8 weeks before retesting. But, it does take at least six weeks for things to settle after starting levo, or increasing/decreasing it. Any sooner would give you inaccurate results, not fit to dose on. Especially where TSH is concerned, because it moves quite slowly, and doctors tend to dose by the TSH - which is totally wrong of them, but that's another story.

[Hidden]

Thank you that makes sense regards the inaccuracies before 6 weeks , perhaps that is what my GP was trying to say, hopefully she will get back to me once she has spoken to the pharmacist and we have a clear understanding 🙂

[PurpleNails Administrator]

When you start / adjust a new dose level it takes 6 - 8 weeks for the levels to settle. The FT4, FT3 will be finding their level & balance & the TSH can take a long time to respond. 

Initially the replacements “tops up” levels but over time the replacement “replaces” what the struggling thyroid can’t produce.  

The TSH is unreliable and not be an accurate reflection of thyroid levels but it what doctors often focus & go by. 

The doctor possibly doesn’t understand this & has referred you back - but is following the usual procedure of a few months later.

So there is a rationale for saying 8 weeks, pushing it to 12 weeks just allows leeway & easier time managing for the practice - if you have symptoms  you can push for earlier testing.  

Earlier on in treatment increasing Levo timely if tolerated can be better.  Some are sensitive to adjustment so smaller, longer time gaps can sometimes be better. 

Things to remember for testing - 

A - Always check what’s being tested & collect test results with reference range.

B - Biotin - cease 3 days before draw to avoid possible test interference

C - Consistent unchanged dose - minimum 6 weeks previously before retest 

D - Delay replacement dose on day of test (take after blood draw) 

E - Early morning appointment. (Book as close to 09.00 as possible) 

F - Fast overnight.  This can have a slight impact.  Drink lots of water

[Hidden in reply to PurpleNails]

Thank you for this , it is very clear rationale. Much appreciated ☺️