What to do next??: Hi! I’ve posted a few times on... - Thyroid UK

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What to do next??

Murphysmum
Murphysmum

Hi!

I’ve posted a few times on the site recently but I’ve just received my long-awaited medichecks results and I’d like some advice on where I turn next.

I posted my vitamin results yesterday but for sake of ease here they are again:

Vit D: 74 (25-162nmol/l)

Haemoglobin: 129 in Jan 18 (115-160g/l)

Ferritin: 22 (15-200ug/l)

Serum folate: 13.9 (2.8-20ug/l)

Vit B12: 424 (180-2000ng/l)

TSH from 4/18: 0.15 (0.2-4.5mu/l)

So, my ferritin is very low and others aren’t fabulous!

My thyroid panel is as in photo.

Add into the mix that I’m starting to realise I seem to get “flares” of IBS (happening just now) where my tummy is achey most of the day and bowel movements/wind become different to normal, my energy is just gone and my legs feel like they’re full of concrete. I had thought this was purely thyroid related but now I realise it might be more to do with the IBS. I’m trying to identify if anything dietary is causing this or if it’s just a symptom of all my metabolism being pants.

For anyone that wants a fuller picture, please read my profile. This whole thing started after a period of extreme stress last year so I suspect my adrenals are involved too. In fact I’ll post my cortisol results too!

Apologies for the long post, this forum is great, so many well informed peeps and I hope some can help as I feel like I’m going round in circles and I don’t know what to do next. TIA x

Edit: can’t add more photos... here’s my cortisol results from January.

Cortisol saliva waking: 8.35 (6-21 nm/l)

12 noon 1.590 (1.5-7.6nmol/l)

1600 hrs <1.5 (0.00-5.49nmol/l)

Before bed 10pm <1.5 (0.00-1.99 nmol/l)

15 Replies
SeasideSusie
SeasideSusieAdministrator

Murphysmum

TSH: 0.247 (0.27-4.2)

FT4: 28.5 (12-22)

FT3: 5.14 (3.1-6.8)

RT3: 36 (10-24)

Those results show that you need T3 added to your Levo. Your conversion is poor as you have over range FT4 (165% of range) and your FT3 is 44% through it's range. When on Levo only the aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges.

Your T4:T3 conversion ratio is 28.5 : 5.14 = 5.54 : 1 and good conversion takes place when the ratio is between 3:1 and 4:1.

Your rT3 is high because your FT4 is so high and making too much rT3 and not enough FT3.

So all of these show poor conversion and you need a reduction in Levo and the addition of T3.

You know you have Hashi's and had information about that previously.

**

Ferritin: 22 (15-200ug/l)

This has already been covered and you know to ask for a full blood count and iron panel.

**

Vit B12: 424 (180-2000ng/l)

An extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

As long as you don't have any signs of B12 deficiency (check here b12deficiency.info/signs-an... ) then you could supplement with sublingual methyhlcobalamin lozenges 1000mcg along with a good B Complex.

Serum folate: 13.9 (2.8-20ug/l)

This is fine. It should be at least half way through range.

**

Vit D: 74 (25-162nmol/l)

The Vit D Council recommends a level of 100-150nmol/L so if you're good at making Vit D naturally from the sun then it may rise during the next few months. If not then you could

supplement with D3 and 2000iu daily may be enough but it's trial and error and retesting twice a year to ensure you stay within the recommended range is recommended.

There are important cofactors needed when taking D3 as recommended by the Vit D Council - vitamindcouncil.org/about-v... D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems. D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds. Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds naturalnews.com/046401_magn... Check out the other cofactors too.

As you have Hashi's then for best absorption BetterYou oral spray would be a good idea. They do a combined D3/K2-MK7.

**

Cortisol saliva waking: 8.35 (6-21 nm/l)

12 noon 1.590 (1.5-7.6nmol/l)

1600 hrs <1.5 (0.00-5.49nmol/l)

Before bed 10pm <1.5 (0.00-1.99 nmol/l)

These are all low, with the exception of the bedtime sample because there isn't a proper result so you don't know where that lies. I take it it's a Medichecks test, I think their bedtime results are stupid, it could be 1.4 and that would be too high, it could be 0.1 and that would be too low. They don't test DHEA either and Cortisol and DHEA should both be tested together.

Article on low cortisol here rt3-adrenals.org/low_cortis... - check the links at the bottom also

Dr Myhill's article on adrenal test results here drmyhill.co.uk/wiki/Adrenal...

**

Don't start all supplements together, start with one, give it a couple of weeks and if no reaction add in the next one, etc. That way if you do have a reaction you will know what caused it.

Thanks seasidesusie!

Yes, I realise I’ve posted before about ferritin etc... I just couldn’t wait until I had every result before I asked!

I do have quite a few signs of low B12 and I’ve looked at the list before. I have ordered the sublingual lozenges but I have been taking b complex for about 3 months now. Do you think I need more action than this?

I’ve been taking vit d supps for a couple of months too now but I realise they’re probably not ideal. I have ordered the spray you recommend in another post.

Regards the T3, I think this is what I thought but tbh I’ve read so much and looked st do many blood results recently, I’m thoroughly confused!! Can I ask the go about this? Will they laugh me out of the surgery? Where do I go with this now?

Thank you ☺️

SeasideSusie
SeasideSusieAdministrator in reply to Murphysmum

Murphysmum

Taking folate/folic acid (which is contained in B complex) can mask signs of B12 deficiency. If you already have some signs that are on the list, maybe you should be getting checked for B12 deficiency/pernicious anaemia before supplementing with sublingual methylcobalamin.

Regards the T3, I think this is what I thought but tbh I’ve read so much and looked st do many blood results recently, I’m thoroughly confused!! Can I ask the go about this? Will they laugh me out of the surgery? Where do I go with this now?

Given that most GPs know very little, if anything, about T3 and conversion of T4 to T3, your GP possibly may say that it's not important, has nothing to do with anything, etc. You could ask to be referred to an endo but you'd need to find a good one who has knowledge of thyroid rather than just diabetes, and is T3 supportive, not all of them are.

Dr Toft has recent written a new article suggesting that many patients can benefit from the addition of T3

rcpe.ac.uk/sites/default/fi...

And if all else fails, source your own T3 and self medicate along with your Levo, with guidance from experienced members, like a lot of us do.

Thank you.

Scary but interesting. I will ask the gp about the B12 thing. The one who called with my results last week said “yes, they’re all fine”, but I knew to check for myself! I shall see a different one who I rate a bit more! I’ll ask about T3 too, although I’m not feeling confident. I’d like to go down that route with the support of a gp if possible but I can see from this forum that that is unlikely! If so, then I’m sure everyone here will keep me right.

Thank you so much.... lookout for many more queries from me to come! 😂

Just as an addition... should I think about reducing my levo a bit in the meantime? I do feel over medicated at 175mcg.

Kell-E
Kell-E in reply to Murphysmum

I would reduce it as your body is evidently seeing it as too much T4....it is churning out the rT3.

Murphysmum
Murphysmum in reply to Kell-E

How much would be sensible do you think?

My TSH was 4.7 then 8.5 when it was last checked and I was on 25 Mcg less. Then after an increase of the same it went to 0.15 then 0.2.

It’s all over the place, how do I know how much to reduce it by??

Kell-E
Kell-E in reply to Murphysmum

That's really hard to say because you are up and down due to Hashi's. How did you feel at 25mcg less?

Murphysmum
Murphysmum in reply to Kell-E

I’ve felt pretty awful since last sept, hence gp diagnosis of chronic fatigue.

Can’t figure it out... felt great a couple of weeks ago, yet bloods say I’m not converting. Feel awful the last week, really heavy limbs, headaches yet no change other than my levo is a different brand! Saying that, I do feel a bit over medicated at the moment but still can’t shift the weakness etc.... talk about confused!

SeasideSusie - Have decided I’m going straight to go tomorrow morning!How can I convince them to check for B12 deficiency if I’m in range (424, range 180-2000ng/l)?

Similarly ferritin. It’s actually dropped in the last 6 months and I’ve been supplementing so a bit worried about this too.

SeasideSusie
SeasideSusieAdministrator in reply to Murphysmum

Murphysmum

B12 - list all symptoms of B12 that you are experiencing and say that even though your results are in range then the symptoms fit with B12 deficiency so can you have further investigation.

Ferritin - say what you've just written, that despite supplementing your Ferritin has decreased from XX to YY and you understand that low Ferritin can suggest iron deficiency anaemia so can you have a full blood count and iron panel.

You can say you have taken advice from NHS Choices recommended source of information about thyroid disorders, which is the charity ThyroidUK, but don't mention the Internet or forum as they don't like that.

Thank you SeasideSusie. I’m off to write this down... damned brain fog!

I will ask about T3 too (with my fingers and toes crossed for a positive response!)

Ok an update Kell-E and SeasideSusie,

I went to the gp this morning and neither of the ones I’ve dealt with were on... cue long explanation to another gp!

She then decides that as I said I have lowered my levo dosage as of today, I should just supplement with iron and book bloods for 6 weeks time. I nearly cried. In fact, if it hadn’t been for the long grilling about my mental health, and whether or not I was tearful often, I might have!

She looked at my medichecks results and said “well, that’s to be excepted and those are in range” and that was that.

I got a bit stroppy and said that I wasn’t waiting another 6 weeks feeling like this, on top of the 9 months I’ve already felt awful. I explained I’ve lost a business that took me 5 years juggling kids and work to build up, and countless opportunities to do things with my kids and husband and I was done with it!

She then reluctantly did bloods for B12 muttering that it would proabably just be the same as before. When I said even if it was and that I’d like to address these issues as I felt that was the way to getting my levo/hashis more stable, she said maybe we would see what the bloods showed in 6 weeks and then think about an endo appointment.... aaarrrggghhh!

What is wrong with these people? I’m not a hypochondriac, I’m not looking for a sick line, I’m sitting there asking them to help me help myself and potentially save the nhs a fortune on other health problems I might have in future. FFS. Rant over!

SeasideSusie
SeasideSusieAdministrator in reply to Murphysmum

Murphysmum

She then reluctantly did bloods for B12 muttering that it would proabably just be the same as before.

What? ls she just retesting B12? That's not what you need. Did you show her your list of signs/symptoms of B12 deficiency? If so then it's not serum B12 that needs testing, it's homeocysteine, and MMA (methylmalonic acid) that will confirm B12 deficiency/pernicious anaemia, also Active B12.

Did you ask for an iron panel and full blood count? You shouldn't just supplement with iron with you level of ferritin, there's so much more to it than that. Did she prescribe an iron supplement?

SeasideSusie nope, nope, no and nope!

I am so p’d off. And kind of annoyed with myself that 8m not quick enough minded at the moment to argue effectively.

I think she just retested because I was being pushy. I told her a load of the symptoms that I had of B12 deficiency. She said that another test would probably show the same (obviously, rolls eyes!)

I asked for an iron panel but I think she wants this done in 6 weeks, although she did take 2 vials of blood so...?

I told her I was taking spatone (1/day) and asked her if that was ok and could I do that without being sure why my ferritin was low and she said “of course” 😕

My sister has advised I go to a private gp and just get a B12 injection and see if it helps... I figured not a bad idea 🤔

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