Next steps - the circular arguments - Update - Thyroid UK

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Next steps - the circular arguments - Update

MMaud
MMaud

Hi again everyone.

I updated my earlier thread yesterday – essentially with this post, but I’m conscious new posts don’t seem to boost the whole thread up the reading lists. I’m posting this again, in the hope it might just help someone, somehow.

I eventually wrote to my doctor on Tuesday, in order to give her some thinking time prior to seeing her. I quite often do this, so that I can gather my thoughts, and ensure I make all my points, in a structured way, rather than end up rambling or ranting.

In the end I decided to keep my approach ultra, ultra simple to cut directly to the chase. I expressed, as was pointed out here, that the current approach wasn't keeping up with my apparent thyroid failure rate. I also stated my last TSH was exactly the same as 2 years ago, even though I have been taking 75mcgr Levothyroxine, and I wasn't feeling credibly much better in that 2years either.

I reiterated that I am content with paying for tests or treatments myself, however I feel that should be for a finessing exercise and we are far from finessing at the moment.

The upshot is she telephoned me yesterday evening to discuss my letter and propose a way forward.

Having received my letter yesterday morning, she called the Endo I saw privately and shared my case with him again, and asked his view and advice.

The upshot is I have been titrated immediately by 25mcgr (Hurrah!), to 100mcgr per day and that will continue until my TSH is under 1. She was at great pains to explain the symptoms and risks of overmedication. I stared at 25mcgr in March, but all titrations have been painfully slow at 12.mcgr, so the full 25mcgr seems like a breakthrough in itself!

The only downside is the Endo declares if my TSH goes sub-1, and I still have symptoms, then they are not caused by my thyroid. I'll cross that bridge, if I need to. At that point, I’d be happy to get my hand into my pocket.

At long, long last, I have a proper titration and a bit of a more reasonable basic plan. Fingers crossed for a bit more comfort some time soon.

9 Replies
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SlowDragon
SlowDragonAdministrator

6-8 weeks after increase in dose you will need full Thyroid evaluation. TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

They both have offers at moment

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be under 1.5 when on just Levothyroxine to be adequately treated

sps.nhs.uk/wp-content/uploa...

helvella
helvellaAdministrator

The only downside is the Endo declares if my TSH goes sub-1, and I still have symptoms, then they are not caused by my thyroid.

The inference being that the endo is unable to identify whether your symptoms are, or are not, due to thyroid issues. That is a fine claim to professional competence.

Guys - I make no claim that I am in an ideal situation, but earlier this week, the instructions, albeit from a different Endo were, to paraphrase, that my TSH was in range, my that my FT4 was low and FT3 below range was irrelevant, and that my GP should desist from testing those, and that my symptoms are not thyroid related.

On that basis, my GP felt unable to continue to titrate upwards on my dose, although I persuaded her at the time to round my 62.5mcgr dose to 75mcgr. That then showed from testing post-titration not to be maintaining my TSH.

For right now, this minute, I am content I am getting at least the most basic pharmaceutical support, for TSH down to sub1, with the more usual increments (not the half increments I had previous been on).

I'm not under any illusion my challenge for better health is over, but I will accept a bit more pharma support to get to a baseline of an adequately suppressed TSH.

It is clear that there is an extreme shortage of appropriate expertise and belief out there, but, for me, some battles have to be fought in bite sized chunks.

When it comes right down to brass tacks, I am far more likely to need my GP in my life than she needs me. At least she is interested in bettering my lot. Yes, of course it is disappointing that she isn't better equiped for some of my needs, but in my life, an open mind is far more difficult to find than an open mouth.

I'll keep her for now.

Phoenix605
Phoenix605
in reply to MMaud

Try drawing yourself up a colour coded chart symptoms down the side and across the top test date, dosage and result. If you can remember roughly how you were feeling at each test point go back to the beginning or even just as you felt at diagnosis. I listed every symptom I had off the TUK symptom list and used a simple but vibrant colour code. Red=not good, green=OK, yellow=a change either improvement but not quite green yet or back slip but not back to red or still just yellow . I would fill it in on test day and then add the test results when they arrived.

I found it very helpful to have this clear visual aid to show my GP who was also not very thyroid savvy but at least willing to listen. If we are not careful we end up concentrating on just a few main symptoms and if there is no improvement GPs dont see the point or need to persevere. As the 20 odd symptoms I had gradually changed from red to yellow and eventually mostly green I found my GP became far less resistant to pressing on at a reasonable pace, as she could see we were heading in the right direction. It was rare that I could not show some small improvements after a raise which seemed to encourage her to persevere til the biggies like fatigue, brain fog and feeling cold responded. It also helped me to see which werent changing at all and might be caused by something else (nutrient deficiencies in my case) and in turn which of those improved as I added in supplements.

It sounds like yours is at least willing to try to work with you and outside advice, and being able to ‘see’ your symptoms fluctuate might be the final nudge needed so when you get close to your final dose, the obvious continued improvement may be enough to persuade her to dip under 1 if it turns out that is what you need.

MMaud
MMaud
in reply to Phoenix605

That's a great idea, Phoenix. I do do a sort of Executive Summary with each set of results, but as a visualiser (me, not necessarily her), I can see how that would work. (Why didn't I think of it!!)

Whilst I ramble on here, I do try to keep my Doc correspondence very targeted, to focus her mind.

As I've said before, she is open to communicating her very modest knowledge, which although frustrating, is at least honest, and will refer to others. As I've said before, I embrace an oprn mind, where sometimes I'd rather do something else with an open mouth professing total codswallop.

Since diagnosis (only very slightly raised tsh) and hashimotos antibodies in May, I got 25 levo. I unilaterally upped my dose from 25 to 50 to 62.5 (dragging my docs with me), then I finally saw an Endo and he said stop faffing and just take 75. Since then I'm adding the odd extra 12.5 (ie 100 3 x per week) as I felt my muscle cramps were getting worse again, terrible constipation and feeling more tired etc - it's all by way of experimenting on my own body to see what suits. My heart rate has gone from c40bpm to c60bpm; I'm less cold and other symptoms have abated. I'm cool with just looking at tsh and from what people say, it seems one can happily go down to almost zero as why would there be thyroid stimulating hormone if you had enough thyroid hormone?

Your last question is absolutely right, and one that should be asked more often. I put it this way: If we are taking exactly the right amount of thyroid hormones that our body needs, how much TSH will our pituitaries produce? It could well be zero, but that wouldn't mean we were taking too much hormone.

Who needs an endo, if the computer says no? What a smeghead.

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