****UPDATE**** These Thyroid result numbers coming in lower than i normally have, please can you help ?

[ferretmam]

Sorry for not getting back sooner, but i've been a bit clumsy, fell up steps and hurt my leg, then fell and broke my arm, also the gp surgery was in no hurry to get back to me for a chat. Gp was a little difficult at first as i'd had my bloods done privately, though when i pointed out that they've closed my surgery and it is near impossible for me to get their other one, she relented. I politely asked for a raise in my T4, initially she refused and said i was on a high enough dose, and that the rest of the patients in surgery are on lower doses than me ! Though pretty difficult not to yell at her, i gave her the numbers and explained why i thought i was still under medicated. Thankfully she gave in and upped my dose to 150 mcg but said she was only giving it short term as she expects i will get hyper and that will cause more complications. I guess i get to prepare my next speech to her based on my next set of results ( she says i must travel to the other surgery for their TSH test..... She'll be lucky ( i'm broken and can't drive , i also have no one who can take me there, i live out in countryside about 2 miles from nearest bus service ) once again i will test all my levels myself ! Thank you everyone for your previous help, without you all i could not have coherently put forward my case xx

**Original post from May 2020 **..... I hope everyone is as safe and well as can be, coping well with lockdown and hopefully not too bored. I'm usually on holiday right now, but this year i'm happy to stay home and i'm relieved we've not been too badly affected in this area.

Latest results and i don't think some of the numbers are going in the right direction

Brain fog is really bad today, it's been getting worse since my last test & certainly much worse since my Levo increase back in January. In the seconds it takes to jump from one web page to another, i've forgotten what on earth i'm trying to achieve.

Typing this was a bit of a nightmare, hopefully it's all in there.

I'm still currently taking 125mcg Levothyroxine

Tsh 2.47. ( 0.27 - 4.2 ). This has began to rise again. - 1.6 1st April

FT3. 3.96 ( 3.1. - 6.8. ). This has lowered - 4.42 1st April

T4. 13.5. (12 - 22. ). So has this - 14.6. 1st April

Thankfully the next two are still reduced, gluten free really must help.

Thyroid Peroxidase antibodies 10.2. < 34. - 13.6 1st April

Thyroglobulin antibodies 54.5. < 115. - 64.3. 1st April

Folate. 3.55. ( 3.89 - 19.45 ). Last time result failed

Ferritin. 101. ( 13. - 150. ). 119 1st April

B12. 150. ( 37.5. - 187.5. ). 150. 1st April

Vit D. 74.1. ( 50. - 175 ). 66.1 1st April. Gp dropped my dosage to 1000 iu , so i bought my own to supplement. Still not as high as i'd like to be though.

I checked my patient online summary as i should have had a Gp Tsh blood test in March. It says on my summary "request withdrawn" ( they also don't seem to have a record of a previous visit to surgery either ! ) i guess they could say that the blood test was withdrawn because of the current covid situation. So my Gp has no idea right now what my thyroid is or isn't doing. Though i guess to him these are "normal" results. I eat all the beans,peas,broccoli etc recommended by Medichecks for the low folate numbers. Do i supplement with something over the counter (which i happily will as it's much less stressful ) or do i really need to see a Gp once more ?

Thanks in advance, any help is appreciated x

[SeasideSusie Remembering]

ferretmam

I eat all the beans,peas,broccoli etc recommended by Medichecks for the low folate numbers. Do i supplement with something over the counter (which i happily will as it's much less stressful ) or do i really need to see a Gp once more ?

Clearly folate rich foods aren't helping much. Your folate result may indicate folate deficiency according to cks.nice.org.uk/anaemia-b12...

Folate level

◦Serum folate of less than 7 nanomol/L (3 micrograms/L) is used as a guide to indicate folate deficiency.

◦However, there is an indeterminate zone with folate levels of 7–10 nanomol/L (3–4.5 micrograms/L), so low folate should be interpreted as suggestive of deficiency and not diagnostic.

You are in the "indeterminate zone" with a below range level but not below 3. Your GP may suggest prescribing folic acid but you may do well enough on an over the counter supplement but I would get methylfolate (the converted form of folic acid) rather than folic acid. As you already have an excellent B12 level, I personally wouldn't bother with a B Complex which would contain methycobalamin (B12) as well, I'd just get a methylfolate supplement for now and see how you go with that. I've never taken methylfolate on it's own so can't recommend one, but there are many makes, just make sure it's methylfolate not folic acid.

As your ferritin is dropping, and it's still a good level, I'd just eat iron rich foods such as liver every couple of weeks, or liver pate, black pudding, etc.

It looks like your Vit D is on the increase so that's good. Aim for 100-150nmol/L, personally I'd go for as close to 150 as possible.

Your thyroid results show the need for an increase in your dose of Levo, 25mcg now, retest in 6-8 weeks.

[ferretmam in reply to SeasideSusie]

Thank you, will do that. Though black pudding & liver has never really been too high on my favourite list 😂

Don't really understand enough about B's so don't want to drop too far. Will hunt down the methylfolate x

[SeasideSusie Remembering in reply to ferretmam]

Ferretmam

Are you supplementing B12 or is that your natural level without supplementation?

[ferretmam in reply to SeasideSusie]

That's been my level for the last couple of tests, had supplemented over a year ago but got told by Gp to stop as he thought it was going high.

[SeasideSusie Remembering in reply to ferretmam]

OK. Our B12 store is supposed to be good for about 2 years, so you may be fine with just the methylfolate for now then.

[ferretmam in reply to SeasideSusie]

2years ago in April 2018 B12 was 179. ( 37.4. - 188 )

Folate serum was 19.98 ( 3.89 - 26.8 )

Hadn't supplemented any B vitamins back then.

So my B12 hasn't dropped too far, thankfully.

[Angel_of_the_North in reply to ferretmam]

These are in stock: bigvits.co.uk/product/folat...

[SlowDragon Administrator]

Do you always get same brand of levothyroxine?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose 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)

Is this how you do your test?

TSH too high

Ft4 and Ft3 too low

Ft4 only 15% through range

Ft3 only 24%through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

So you are good converter but under medicated

On just levothyroxine we typically need Ft4 around 70% through range

guidelines by weight might help push for dose increase

Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

BMJ also clear on dose required

bmj.com/content/368/j

Do you supplement B12?

folate is deficient low side.

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet (or even half a tablet for first week) per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

[ferretmam in reply to SlowDragon]

I take the test as advised on here. Used same brand of Levothyroxine since i was diagnosed. I used to supplement B vitamins but had a note to stop taking them about a year ago as B12 was high.

I guess i need to get in touch with Gp after all 😉

Will search for those B methylfolates x

[SlowDragon Administrator in reply to ferretmam]

How much, roughly do you weight ...in kilo

[ferretmam in reply to SlowDragon]

Erm.... Dunno in kilos, but varies between 10 &11 stone. Sadly at minute weight is piling on again

[haggisplant]

I’m also v puzzled about my levels at the moment . I once had an issue with a brand being incorrect strength, Teva in 2012.

They’re supposed to be v rigourous now though.

[haggisplant in reply to haggisplant]

Folate has more bioavailability than folic acid, you could try that.

[ferretmam in reply to haggisplant]

I don't know anyone with thyroid problems that i can compare notes with, so i just thought my meds were ok. I had seen some posts in USA that said their meds were not working, but i don't think it was Levo related.

Will try and get some methylfolate, looking at symptoms list, i've had nearly all of them for such a long time now x

[greygoose]

You need an increase in dose, you're now under-medicated on 125 mcg levo - which isn't a huge dose. Hypothyroidism isn't a static disease, it evolves.

Thankfully the next two are still reduced, gluten free really must help.

Thyroid Peroxidase antibodies 10.2. < 34. - 13.6 1st April

Thyroglobulin antibodies 54.5. < 115. - 64.3. 1st April

Doubtful. But, what does it matter, anyway, they're both within range. Not that that means you don't have Hashi's, you could, anyway. The antibodies are not the disease. It's just that if they are over-range, you are positive for Hashi's, and Hashi's will always be there, no matter how your antibodies fluctuate. However, if they are within range, it doesn't prove anything either way. So, once you've had an over-range result, there's really no point in retesting them, it doesn't change anything.

[ferretmam in reply to greygoose]

Ah ! Thanks for explaining, some days i think i understand what is going on...... Next day i have fresh air inside my skull ! .. A while ago the results were nicely over range, so i try to be really careful about gluten. Will contact Gp after bank holiday, dunno why i thought this whole thyroid thing would be easy to deal with 😂 xx

[greygoose in reply to ferretmam]

Ah, that's the mistake most doctors make! They think it's easy.

Gluten-free will not cure your Hashi's, so if it doesn't improve your general health and/or symptoms, then there's no poing in being gluten-free.

[ferretmam in reply to greygoose]

Ah heck ! I'm riddled with symptoms of so many things my Gp shakes his head in despair. He has me in what i call his "dustbin theory ". of Fibromyalgia even though my muscles don't ache. My nerves however are ridiculously painful but because my B12 comes back ok... Therefore i must be ok !

Maybe time to try and treat myself to a nice chocolate cake

[greygoose in reply to ferretmam]

More than likely that those symptoms are of 'so many things' but all down to thyroid. With that low FT3, it wouldn't be surprising.

What confuses doctors - well, one of the things - is that hypo symptoms are non-specific. They can occur anywhere - and everywhere - in the body. But, which scenario is more plausible - a) you have thirty different disease all with one symptom each, or b) you have one disease with 30 symptoms. But, of course, it's more profitable for them to treat each symptom as a separate disease.

There's plenty of room to improve that B12. Why don't you try taking a good B complex containing methylcobalamin and methylfolate. See if that helps. Doctors know nothing about nutrients, anyway.

Try that chocolate cake and see how you feel afterwards. If you don't feel any worse, then you don't need to be gluten-free.

[ferretmam in reply to greygoose]

😁 Thank you will do just that ! x

[greygoose in reply to ferretmam]

[Retteacher]

Good advice above as ever. However, I would ask two things. Do you have inflammatory gut symptoms? Abdominal aching, flatulence,irregular motions etc. I do and started upon a gluten free and lactose free diet. I then realised that taking my Teva tablets early brought the aching on early. Delaying the tablets delayed the symptoms. I therefore switched to Mercury levothyroxine which contains lactose. After five days the above symptoms increased with itching and diarrhoea- a clear indication that I was reacting to the lactose.In desperation I have now gone private and am taking Tirosint Hypoallergenic levothyroxine. Three days in so far so good.- reducing abdominal symptoms. The NHS equivalent would be an oral solution although they do contain some preservatives.

My second minor point would be why is the GP concerned about a B12 high in range? Unless you have kidney problems higher serum B12 is a good thing - for example less brain shrinkage with age.

Anyway good luck with the increased Thyroxine and folate advice which I think is spot on as ever.

[ferretmam in reply to Retteacher]

Mostly i get terrible symptoms if i don't take care with my diet. Been gluten and lactose free for 3 years now. Things are not always perfect but much better than they were. I did'nt think i react too badly to my Levo but thinking about it i do actually itch an awful lot. I had been putting itches down to other existing medical conditions.

I also really have no idea what my latest bunch of Gp's think regarding B12, i find mostly that if it's not on their computer screen....... It can't be happening. Each one of them seem to have a different attitude to treatment. I did get one earlier in the year that seemed to understand all these little connections. Sadly she's gone already, it seems we are a training practice with a high turn over .

Going to ring surgery straight after bank holiday, though it will have to be a phone consultation as they're closed for foreseeable future except in emergency.