If I wasn't stubborn my levothyroxine levels would be changing so fast I'd spin (or collapse)

[KatyMac68]

Back in early October, (I think) I posted this thread

healthunlocked.com/thyroidu...

Explaining where they had sprung and unexpected blood test on me and it was after taking my thyroxine, and my levels were so low they wanted to reduce my levo from 50 to 25 (Sept result: TFT results on patients taking thyroxine are

technically validated. Suggest contact Consultant or

Clinical Scientist for advice.

Serum TSH level 0.22 mIU/L [0.27 - 4.2]; Below low reference limit

Serum free T4 level 21.8 pmol/L [12.0 - 22.0])

I suggested waiting 12 weeks and retesting ad that's what they always say when I want to increase

So after a blood test yesterday I got this text

"Your thyroid blood test has shown that your hypothyroid is under treated. I suggest that we increase the dose by 25 microgram on alternative days (Take 50 micrograms one day, then 75 micrograms the next day) and repeat bloods in 2 months time. I have changed you repeat medication list accordingly. Please book an appointment in 2 months time for repeat blood test at the phlebotomy clinics"

& then the wrong contact details for the clinics

(Dec result: TFT results on patients taking thyroxine are

technically validated. Suggest contact Consultant or

Clinical Scientist for advice.

Serum TSH level 10.30 mIU/L [0.27 - 4.2]; Above high reference limit

Serum free T4 level 14.3 pmol/L [12.0 - 22.0])

I do get confused 😕

[GlowCoach Administrator]

Thats a conservative dose increase considering your FT4 is so low and TSH so high. You could try and push them for a full 25mcg dose increase if you felt like it because it looks like its needed.

Any new Levodose takes a good 6-8 weeks for results to level off but even a fewmonths further down the line as more healing takes place levels can taper off further, so worth leaving longer between blood tests & dose increases.

50mcg Levo is really only a starter dose so no wonder you need more.

If you tell us your approximate weight in kilos we can estimate an approx final dose.

1.6 x weight in kilos = approx final dose required

Have you now also tested and supplementing key vitmin levels - ferritin, folate, B12 & d3?

[KatyMac68 in reply to GlowCoach]

I've been on 50 for nearly a year - they started me on 25

I am 75kgs

I supplement B12 & D quite aggressively so they are always (for heading up for 10 years) good I also supplement with methyl folate and iron so last time my numbers were OK but they are a year old so I'll see about getting them checked

I just feel if I'd dropped to 25 like they said I'd be in a real mess

Oh and I have a letter on file from the local thyroid consultant saying I shouldn't be on any levo at all as its not that bad

[GlowCoach Administrator in reply to KatyMac68]

So by weight your final dose will be around 120mcgs Levo, so even 75mcgs is fairly conservative. GPs are afraid to give us too much Levo, so instead give us too little.

How do you feel?

Indeed if you had dropped to 25mcgs you would be pretty unwell by now.

If you were diagnosed a few years ago then your thyroid function will only have decreased by now. Your doctors should be going by both blood tests and how you feel.

Always take care to get 9am or sooner blood test, test fasting & last dose Levo 24hrs before. Stop any biotin containing supplement 4-7 days before test.

[KatyMac68 in reply to GlowCoach]

Yes, my 2 month appt is booked for 8am

I was diagnosed in Nov 23 (I think - menopause CFS/ME & FM make memory crap)

I did drop to 25 for a few weeks (in case the GP was right) but my BP spiked & they thought I might have a stroke) but I was only low for a few weeks & I put it right back up

I don't think the GP cares how I feel

[TiggerMe Ambassador]

"I think - menopause CFS/ME & FM make memory crap"

Are you using HRT? Low thyroid/ sex hormones are generally the cause for the last 3 labels

[KatyMac68 in reply to TiggerMe]

Maybe but my ME/CFS diagnosis was in 96, FM in 2008 & Meno when they took my ovaries on in 2018 - HRT soon after but I don't think it's balanced right

[TiggerMe Ambassador in reply to KatyMac68]

I believe ME/CFS and FM are just labels for a group of symptoms which they use to fob us off, chances are your thyroid has been behind all of these symptoms for a very long time.... I could tick all of the boxes for the above but now I've got my hormones balanced, vits and mins optimized I've lost all of those symptoms!

[KatyMac68 in reply to TiggerMe]

How amazing! I suspect a lot of the different AI conditions are merely symptoms of an over arching illness/condition rather than individual illnesses (I also have IBS, allergies & hypermobility) but I guess thyroid works as well as a hypothesis

[TiggerMe Ambassador in reply to KatyMac68]

I can tick the IBS/ leaky gut (now much improved) and food/ histamine intolerances... thankfully I swerved the hypermobility my Sister got that!

I was looking back at your earlier posts and you are going to have to self advocate to get your treatment optimized, you certainly need an increase to 75mcg with a TSH above 10!!... and likely another increase to get near a full replacement dose and you'll need to tinker with your HRT too.... a year ago your folate was awful and your cholesterol high (due to being Hypo) B12 excellent and Vit D a bit over the top (doesn't really want to exceed 125nmol/L)

Edit... just pulled up these results from 3 months ago

In June my results were

Serum TSH level 1.48 mIU/L [0.27 - 4.2]

Serum free T4 level 16.2 pmol/L [12.0 - 22.0]

Serum free triiodothyronine level 4.2 pmol/L [3.1 - 6.8]

B12 & D are always good as I supplement agressively

folate was over 20 in Feb and had to be over 3 I supplement with methyl folate

Serum ferritin level 194 ng/mL; Female Ferritin Reference Range 17-60 years: 13-150 ng/mL

So while they aren't new, they aren't very old

I am saving up for blood tests and a consultant appt I nearly have enough

So Vits and Mins good but shows you needed an increase in Levo then and really need it now!

[KatyMac68 in reply to TiggerMe]

Self advocate? My daughter comes with me everytime now - she came in once (as we were off somewhere so she was with me) and she came out saying the GP was gaslighting me & how dare she offer me anti-depressants when I clearly need more thyroxine!

I have enough 25s to start the 75 today so I will before I collect the new prescription

I wonder if I could say I got confused and take 75 every day 'accidentally'

[TiggerMe Ambassador in reply to KatyMac68]

Straight talking daughters we salute you! I think the time has come that you call the shots with your GP, put in a request to up your prescription as they are very definitely gaslighting you and haven’t got a Scooby Doo😕

[KatyMac68]

Yeah but they got this letter from the consultant so they argue

& I'm a wuss

Text from an email

[TiggerMe Ambassador in reply to KatyMac68]

So this is confirming that when being treated a TSH of 1-2 is a reasonable target, well that's a start, some just say within range...... So the fact that your TSH is currently above 10 shows a need to increase, they have failed you in this trial by not giving you an adequate amount of T4.... this is not you failing it is them!! They have actually proven you have more of a need now than when you started on treatment as your TSH has risen rather than fallen 😲

The fact he tosses in CFS as a get out shows he isn't much use! Did you get the cortisol blood test?

p.s. remember to use the REPLY button else no alert is sent 🤗

[KatyMac68 in reply to TiggerMe]

I do forget to 'reply' it took me ages to realise the difference between the 2 reply boxes as they were so close together

Could be taking the levo in the evening/bedtime instead of the morning ingredients cause such a dramatic change ie last dose was 23 hrs previous rather than 24?

I found I was taking it in the morning ingredients (6am ish with a loo visit) then sleeping another 4/5 hrs before waking up properly

Taking at bedtime means I'm up between 8:30 & 9 which is more manageable

My relationship with health professionals is a poor one - I have a bit of white coat syndrome, plus I no longer trust them after several/many serious mistakes (or even simple disrespect - stopping my husbands life saving daily antibiotics without discussion as "he'd been on them too long" when Papworth intended him to be on them for life)

It leaves me at a loss as to how to proceed with them

Blood test and specialist to be booked in the new year now I have saved enough

[Sparklingsunshine in reply to KatyMac68]

The way I approach them is to stop assuming they know best and that having a medical degree makes them God, doctors are human beings with all the flaws, foibles and prejudices the rest of us have.

Quality varies, a lot, frankly there are members of the medical profession who have no business being there, they are either sociopaths or downright stupid/ incompetent. And partly their training is at fault. GP's especially might have a broad knowledge but its rarely deep. They are supposed to update personal development regularly.

But how many actually do? I think laziness and complacency often creep in. They get paid no matter what and they also close ranks and protect each other, even in cases of gross negligence.

I also think that as they have to pay for our care out of their budget, for blood tests, scans, referrals etc then the whole system is very much geared to reducing us to units of monetary value, with the cheapest options always winning. If you have a rare or unusual condition there is little to no interest in finding out the cause, as that costs them money. Much easier to dismiss us as anxious/ depressed/ hormonal.

Gaslighting is free, so even better. Levo is a classic case, its a cheap as chips so is the preferred NHS option. Pretty much the only one they offer. They dont acknowledge that it doesnt suit everyone and not everyone is OK on it.

So my advice is educate yourself, you are the expert in your own body, not doctors. You know what's normal, you have to live in it 24/7. Read up from as many reputable sources as you can, dont assume doctors know anything about it, especially if its a less common one.

Write notes or bullet points if need be or even write a pre consultation letter and send it. I find it easier to set things down on paper. We have a tendency to get flustered or distracted during a consultation, especially if its going badly and forget things. Have a clear goal in mind, what do you want the doctor to do, what tests would you like to see offered, what treatments are available? And if the GP cant or wont help ask for a second opinion or a referral to someone who can.

Be polite, but assertive. Modern healthcare is meant to be a partnership between two competent adults, not a paternalistic " doctor knows best" with a cowed patient slinking out of the room. Avoid rude, aggressive or stupid doctors like the plague. Easier said than done I know but we all get to know " that" doctor in any practice who is crap. Its worth finding one you like or who is at least amenable and waiting a bit longer if possible to see them.

I dont have much in the way of expectations either. I have quite a poor opinion of the NHS and the medical profession, but its what we've got and we have to get the most of the system we have, not the one we would like. Become your own advocate because if you dont no one else will.

[KatyMac68 in reply to Sparklingsunshine]

I'm going to reread and think

But this is so true

"We have a tendency to get flustered or distracted during a consultation, especially if its going badly and forget things"

[humanbean]

Back in early October, (I think)

You can find out for sure with any date you see on HealthUnlocked, on forum posts or in Chat.

If I position my cursor over any reference to a date (but don't click) e.g. this thread was written 23 hours ago and I position my cursor over the "23 hours" it shows the date and time the thread was started and that was

Tuesday, December 31st 3:48 PM

I have a Desktop PC running Windows 10 with a Firefox browser. Whether that makes a difference to whether or not the actual date and time shows up, I don't know.

[KatyMac68 in reply to humanbean]

Thanks it doesn't work on the phone but I'll try on the laptop