Further thyroid testing "an internet fad"

[Saucery]

Just been told this by my GP. All testing beyond the basic single baseline blood test is something some people on the internet have turned into a craze, apparently.

I looked into getting natural dessicated thyroid but couldnt find any way to get it in the UK, seems its just not available :(

I was prescribed nat dess thyroid by a consultant, Storm.
That was 7 years ago - there were a few I heard about that
were prescribing back then when I used to be a member of thyroid
forums.
My consultant was very willing for me to try it after levo
and levo/T3 combo didn't make any difference and told me
if I sourced it myself and got on ok with it then he's prescribe
it.
It's very rare that a GP will prescribe it without the say so of a
consultant from what I've found out from other Hash patients -
I only heard of one.

@stormtreader you can but it from iherb who ship to the UK eg here

I'm still going through the full thread.

Firstly absolutely get your results (sorry if I've missed that you've done this).

Post them here.

I'd get in touch with the British thyroid foundation - they have a bit more 'official' welly over the other groups as they're linked to as they're the charitable wing of the British thyroid association, and are certainly not 'some group on the internet'. Ring them and discuss your experience.

I'd get the BMA book understanding thyroid disorders which clearly says keep tsh around 1. The ref range (check your results) goes as low as 0.3 (depends on your specific lab hence look at the range on your results) - so trying say a tsh of 0.6 for 3-6 months is not unreasonable. And really a gp should support this trial.

Tweak the dose to get this - alternate day 25/50's or 3 extra 25's a week. But you must stick to the same dose for a least 6 weeks to get the right picture on your results.

The book also lists medicines that interfere with thyroxine - sertraline being one of them. Also, avoid grapefruit as it changes the way the liver processes thyroxine (reduces). (Again, this book is not 'some group of the internet,' it's BMA.)

Tackle other levels e.g. Ferritin, vit d, b12. Get these in upper ranges. I definitely notice I'm better if my ferritin is over 70. I've change my diet to support this (no milk during the day to allow max absorption of iron from all my food - this worked for me but I might be weird).

And this is not woo - I can find a paper stating that this should be considered when looking at the bigger picture of a person with thyroid issues who is still symptomatic. There are some people who need t3 - it's relatively rare but this route must be followed to rule out these issues contributing to your symptoms before looking further into it.

Exercise definitely helps me once my levels are good. I've personally discovered I'm at my best just below 1. I thought I was well a bit lower but I wasn't maintaining muscle mass. Once tsh went up a bit and I did some yoga and physio to build muscle, I felt much better.

Both hyper and hypo states cause muscle weakness so I believe strength fitness for thyroid is really important- only possible when levels are good.

Apologies if I've repeated info, I'll try to read the rest. Small child here!

Oh yes, I'd get a different gp!

I honestly think there's mild misogyny when it comes to treating thyroid issues.

Thanks Violet, that is all very useful. I did pop round to the practice on Sunday as they were supposed to be open but they weren't. I will ask for a printout on Thurs when I go for my 2nd lot of blood tests (VitD, B12, Ferritin etc) as well as booking a follow up appt straight away rather than waiting for a call back.

I have looked further into amitriptyline and I can sort of see where she is coming from if she meant that. However, she didn't say it helped with pain from chronic conditions, she zoomed straight to "you know, your mood can affect your capability and motivationfor exercise".

Fortunately, I hate grapefruit! I am also phobic of blood tests so it's an illustration of how utterly crap I feel that I am willingly going through 2 in a month.

Got them! Phoned up on the offchance and they read them out over the phone now.

T4 is 17.3
Serum free 2.33

I might be missing something but doesn't that make your thyroid underactive even on standard scales? Thyroid UK lists the range for total t4 as 50 to 160 and free T4 as 10 to 24

I'm going off the range that is between 1.5 and 4 for the second one (serum free). That has definitely gone up from last time, when it was about 1.74 iirc. Going to sit down with the Thyroid UK website later and have a look.

Ah now I couldn't tolerate amytripyline and somewhere read the two don't always interact well - is that what you're on?

I don't feel great at over 2.

I honestly think that, with support from your gp, adjusting your dose to just under 1 could help, bit it sounds like there are some other issues to tackle too. What are all the drugs you're on?

Also, it's worth noting a brand called TEVA now do 25s (and 75s I think?) thus illustrating that tiny adjustments do really help. (Please note Mr GP.)

But an extra 3-4 25s a week could fix it. I used to do every other day; if the date was odd (17th march) I took the odd dose (125), if even (20th march) I took the even dose (150). I now use a pillbox as children scuppered that routine!

Do you have a print out and can you photo it here?

That range is peculiar!

Sorry I'm not reading properly as running about!

Ok print out soon.

I'm only on Lansoprazole for an acute gastric episode about 3 weeks ago. Don't drink, don't smoke, eat healthily.

Well, second lot of blood tests show VitD at 31 and serum folate at 3.1. Iron pretty low then. Have a call back for GP but earliest appt is two weeks and not with a GP I particularly like.
Would it be worth starting supplements now and seeing how I go on?

This is a slight digression, but I thought perhaps you would be interested to read this article about taking magnesium to help with depression/anxiety.

www.ncbi.nlm.nih.gov/pubmed/16542786

I would make an appointment with the GP you like and take supplements meantime.

Your Vit D is a bit low too - par for the course this time of the year. Once T3 has entered the cell, vit D is used to connect it to the part of the cell where it is needed. So when it is low, you can get tired and depressed - sort of low level symptoms of hypothyroid. A bit of K2 and magnesium with it helps too.

Off to buy some supplements! See no point not trying them in the meantime. They can always advise on dosage when I go.

Not read the full thread but just needed to comment on this

So if VitD and B12 come back ok then it's happy pills or nothing.

B12 and folate work together as a pair and being low in either can cause MH issue, insomnia, joint and muscle pain, poor memory plus many other things. If they are testing your B12, make sure your folate levels are tested too, especially if you are vegetarian/vegan.

I've seen your update now and your folate is very low. What is your B12 like? B12 is only available in animal products and folate is more easily available in this manner too. Iron that is dietarily useful is difficult to obtain from vegetables alone - green do contain iron, but mainly in a form that the body can't easily process. It is much easier to stay topped up with a red meat diet (or with a full range of vitamins)

Once your levels come back up you may find that your depression lifts - being B12 and folate deficient can play a huge role is depression. And iron in the whole tiredness thing.

Can I join this convo?

I have had unexplained symptoms since having my 4th child, than had a 5th child but still not right. I was told past blood tests are 'normal' and there can't be anything wrong with my thyroid anyway because I've manages to 'conceive children'
I did have vitamin D which was low and took supplements but I still had symptoms. I have been fobbed off for 5 years. The that's bothering me at be moment is the pain in one side of my body I can't get out of bed in the morning and in a lot of pain. I also have period problems and eye problems and also excessive sweating, tiredness, no motivation and lots more but apparently I'm 'just depressed' anyone have any advice could my thyroid still be to blame?

Sam, your thyroid could be to blame but you need a print out of your results. Take a look at the thyroid uk website.

Of course you can join in, Sam I would read through this thread and keep on at your GP to look at your symptoms, even if they are dismissive.
I would like to know the underlying cause for my low results but that can wait until the current symptoms are eased.

B12 was not flagged as cause to return for an appt, Stepping, but I will check it when I go.

Didi actually I believe a lot of GPs aren't that well educated in this area. We can't expect them to know everything. No one possibly can. So I don't understand why they are so quick to dismiss people who have researched their own health.

I've been diagnosed with secondary hypothyroidism. I got this diagnosis after multiple trips to the GP and blood tests and several years on ADs. Always told I was fine just depressed.

It was only when I requested my blood results that I saw my TSH was fine but my FT4 was just under the normal reference range. The lab advised the GP that it was probably just normal for me! They hadn't tested FT3 because they refused to, but the GP managed to get them to check it for me when I phoned back for my results a few days later and it was normal but on the lowest of the normal range.

Again I was told I'm fine go away, so I went away to research and found unneeded a TRH test to know 100% if this was normal for me or not. I found a private GP who referred me to a private endo who agreed to do the test and we found my TSH can never rise. It's not normal for me. I have secondary hypothyroidism and if the NHS had only looked at my TSH results we would never have known this as these results are inaccurate.

I'm now on medication and so much better. My endo warned me that I would need to explain this to the GP when I go for my regular medication checks as they will apparently always be trying to reduce my dose - and that's true. I've had GPs ask what secondary hypothyroidism is and others actually try to reduce my dose until o explain this whole saga and get them to read back through my notes. Every blood test with a GP is a constant worry that they might reduce my dose and stress trying to educate them!