starting dosage of levothyroxine. GP ignoring Endocrinologist recommendation

[Kaatse]

hi everyone, in relation to my original post I decided to “give it to God” and await the endocrinologist referral.

healthunlocked.com/thyroidu...

As recommended by you lovely people (Thank you again):-

I have supplemented 1000ug of folate (L-methylfolate)

Thyromax (see pic) inc. selenium, iodine etc.

and betteryou D3000+K2

My energy levels have increased slightly.

Skin dryness improved slightly.

Mood still up and down.

Pain is still very much through the roof. Having a big fibro flare up, inflammation everywhere (which can be EDS related.

I still feel like my brain isn’t working. Lose words, put the kettle in fridge and my memory just isn’t there.

GP heard back from Endo. Endo suggested starting a dose of 1.6micrograms levo per kg weight.

I currently weigh 90kg.

GP prescribed 25mcg levo and test blood after 4 weeks.

I read NICE guidelines… am I right to suggest this should be minimum 50mcg? But really 100mcg? Then test after a month?

I phoned to question. Endo referral reply says 1.6mcg per kg.

Apparently the GP ‘s grouped together and have decided 25mcg.

I do have bipolar but haven’t had a psychotic episode since 2016 (first and only) so I cannot imagine it’s that. And given they doubled my dose of antidepressants even though I asked them to read MH related letters and plans which did make me manic rising, I’m wondering if this is the reason? However, they haven’t really cared to look before…

I am 40 years old.

My antiTG level is over 600.

Before I go all guns blazing please can you advise? Is this usual on starting levothyroxine?

[SlowDragon Administrator]

Standard starter dose is 50mcg

Many people find they can’t tolerate starting on higher dose

Which brand is 25mcg

As you have deficient ferritin you may be better initially starting on 25mcg

Ensure you test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Has GP done full iron panel test for anaemia

[FallingInReverse in reply to SlowDragon]

SlowDragon , why would low ferritin mean starting at 25 makes sense?

[SlowDragon Administrator in reply to FallingInReverse]

Because Levo is Ft4 (inactive storage hormone) and has to be converted to Ft3 (active hormone) in cells.

For good conversion of Ft4 to Ft3 we must have GOOD ferritin levels

[Kaatse in reply to SlowDragon]

Thank you for your reply and sorry it’s taken me this long to reply. I am supplementing ferritin and GP said my levels were within normal range however, discovered on here and also by private blood test that it is considered low . My GP actually said my ferritin level was irrelevant 😑

[SlowDragon Administrator in reply to Kaatse]

GP’s very rarely know anything about how to manage autoimmune thyroid disease

And NHS only tests for or treats vitamin deficiencies

Down to us to maintain optimal vitamin levels

[GlowCoach Administrator]

Just a heads up that starting at what might be your final dose can be a huge shock for the body and not everyone tolerates that well at all. Its better to start low and work up gradually.

The usual starting dose for an otherwise healthy person is 50mcgs and you could try and persuade them to prescribe that, but if they have already discussed your case in a meeting and decided they would prefer to go with 25mcgs then you may not have a choice and its probably best not to upset them.

Has your GP prescribed iron tablets for your low ferritin?

Multivitamins like Thyromax aren't recommended as they contain iodine which isn;t recommended. There is a pinned post about use of iodine.

A good methyl B complex would serve you much better.

amazon.co.uk/Liposomal-Soft...

Contains B6 as P5P an active form:

bigvits.co.uk/thorne-resear...

healf.com/products/basic-b-...

Explanation about the different forms of B6:

helvella.blogspot.com/p/hel...

B complex comparison spreadsheet:

healthunlocked.com/thyroidu...

[Kaatse in reply to GlowCoach]

Hi and thanks for reply, I’ve had a call back and waiting on the next call. They said they want to monitor me very carefully. So I’ve questioned the starting dose, explaining I would understand if I was over 65 or under the ‘extreme’ caution catagory re NICE guidelines which I am not. We shall see.

I have stopped the thyromax. I just assumed I would be waiting a long time for an endocrinologist appointment and really feel like I would try anything to alleviate some of these symptoms. I’m a mum of four boys under 12 and it’s just not fair on them when I don’t have it in me to take them out for a drive even.

The GP hasn’t prescribed no. She disregarded my ferritin and said it doesn’t factor. So on the advice on my original post I started on ‘Health Leads Folate (L-Methylfolate)’

Folate (L-Methylfolate) 1000μg x 90 Capsules, 5-MTHF Active Form of Folic Acid/Vitamin B9, Please See Our 400mcg Version for Pregnancy, Magnesium Stearate Free, Made in Wales amzn.eu/d/ehhGyzx

Thank you for all the information. I’m trying to take everything in. I really appreciate your help and advice

[SlowDragon Administrator]

And definitely stop the Thyromax

Anyone with Hashimoto’s should avoid extra iodine. Levothyroxine contains all the iodine you need

[redhead41 in reply to SlowDragon]

Is this true even if the diet contains no added iodine I.e. is seafood free? I have tried pointing this out to functional med dr but she says because I don't eat seafood, I still need some iodine in the diet so has prescribed a small amt.

[helvella in reply to redhead41]

For a long time, the main source of iodine for many in the UK was dairy - rather than seafood.

But changes to teat disinfection reduced the iodine level in milk.

Trouble is, there are many sources of iodine - including water. Without testing, you really don't know.

And ThyroMax (mentioned earlier) at recommended dose contains 320 micrograms plus however much iodine is in 220 milligrams of kelp. That is, they don't even say how much iodine it contains - so we even have the possibility of knowing we are taking a small amount.

[redhead41 in reply to helvella]

Thank you for your reply and I'm sorry that I hijacked Katsee's post. I am in NZ, am gluten and dairy free, don't eat sea food. I take 125mcg T4 and 10mcg T3. I understand iodine testing in NZ is very inaccurate so would you think a small addition of iodine in the FM drs own blend would be acceptable? I'm not sure that I would know just how much iodine would be in this blend - haven't asked. How much iodine would be safe- silly question as it would depend on my levels.Thanks

[helvella in reply to redhead41]

Suggest you create a new post and callout to me from there?

[Litatamon]

I don't have anything to add, as you are well covered with the posts left. I just wanted to come on to say I am frustrated for you, to read everything that you are going through in general & figuring out what's what. All the best to you.

[Kaatse in reply to Litatamon]

Thank you, from reading so many posts I’m just one of SO many. Just feel very fortunate to have found this site. Feels kind of unfair that you have all been through similar, lots worse with possibly not the help you’re able to give now at that time though.

[Litatamon in reply to Kaatse]

It is a wonderful source of information. All the best to you

[AddiFeelsCack]

hello, I know how difficult this all can be, I had a magnificent endo & just like you my GP refused to adhere to the instructions basing it on what the staff at the surgery decided.

Luckily I was seeing my endo for multiple things so was back in to see him a few weeks later. He was able to get script for me & had an intense call with my surgery.

They had to comply, but then less than 4 months later upon reviewing cost of medication, told me it was out of the practice budget.

I ended up buying, which seeing as thyroid care is given FOC was annoying to start with, but it is my health, so it’s worth it.

That was nearly 10 years ago, still to date I source my own medication & still GP complains to me.

I hope you are strong enough to combat your GP as they will gaslight & generally manipulate you

It was my endo that assured me,

[Kaatse in reply to AddiFeelsCack]

The GP phoned back, I asked what reason the practice have used to start me on 25mcg. I said referring to ends letter and the NICE guidelines of a trial dose given I’m not on the high caution list and I’m not over 65. The usual starting dose is 50mcg. She said she wants to avoid hyperthyroidism. That my T4 is mid range so it’s possible? I said given the above, my weight and mostly my symptoms and that there wasn’t a risk she was giving me that I believe I shouldnt be started on the standard dose. She actually said “we are not trying to withhold levothyroxine from you” and I said i would hope not… I found it strange she said that but hey ho.

Fingers crossed things start to improve. Any improvement is a win.

[Kaatse in reply to AddiFeelsCack]

I’m sorry you’ve had a nightmare with your GP. And don’t understand how they can say out of budget… they have to budget which means they try to not prescribe? Beyond me!

Thank you for your post. When you said don’t let them gaslight you it really spoke to me (domestic abuse experience) and thought, you’re right… some of the things they’ve said have been manipulative and not just for this. They are ina. Profession that we are supposed to trust and really take their word as gospel. It’s sad when they take advantage of that.

[SlowDragon Administrator in reply to Kaatse]

Levothyroxine is incredibly cheap

Approximately 80p - £1 per packet of 28 tablets

They are being ridiculous

[RuthieRuth]

I hope you found resolution on this - I was started on 100mcg and it was horrific. Now very cautiously starting from 25mcg months later. I would start slow as they suggest if I were you, give your body time to adjust