RECENT BLOOD TESTS RESULTS

[JGBH]

Hello everyone,

Am seeing GP on Monday afternoon so would appreciate any comments regarding my latest results (12 June 2018), in order to be able to get the most from the consultation.

Am rather concerned about my Free T3 level.... as well as haemoglobin, serum iron and transferrin saturation...

About 2/3 months ago I decided to increase my Levothyroxine from 100 mcg and 75 mcg on alternative days to 100 mcg every day (I did inform GP).

FULL BLOOD COUNT:

Total white cell: 8.69 10*9/L (4 - 10)

Red blood cell: 4.71 10*12/L (3.8 - 4.8)

Haemoglobin concentration: 122 g/L (12- - 150)

Haematocrit: 0.392 (0.360 - 0.460)

Mean cell volume: 83.2 fL (83 - 101)

Mean cell haemoglobin level: 25.9 pg (27 - 32) : BELOW RANGE

Mean cell haemoglobin concentration: 311 g/L (315 - 345) : BELOW RANGE

Platelet count: 340 10*9/L (150 - 400)

TRANSFERRIN SATURATION

Serum Iron: 8 umol/L (8.8 - 27): BELOW RANGE

serum transferrin level: 2.30 g/L (2 - 3.2)

Transferrin saturation index: 15% (20 -40) BELOW RANGE

Serum Ferritin: 125 ug/L (30 - 400)

Serum B12: >2000 ng/L (197 - 771) ABOVE RANGE = (I do SI B12 , 1/week so... )

Serum Folate: >20 ug/L (3.89 - 26.8)

THYROID FUNCTION

TSH: 0.50 miu/L (0.3 - 5.5)

Serum Free T4: 20.9 pmol/L (12 - 22)

Serum Free T3: 3 pmol/L (3.1 - 6.8) BELOW RANGE

Please note I have been self injecting B12 (prescribed by GP) for approximtely 16 months, only once/week now. I know that once injecting B12 the blood test becomes irrelevant, have told GP so... and did not ask her to test for B12... but she sneakily required it.... Wondering whether she wants to use the result to stop prescribing B12 although she can see the difference it has made to me.

While I know this is a topic for the PA forum I think it might be of interest for those of us who have thyroid and B12 deficiency + rheumatoid arthritis and other health issues.

I would greatly appreciate comments on those results....

I was told by a private endocrinologist (recommended by the Thyroid people - he is on list of thyroid frriendly endos...) that I should not have T3... That was last November.

I have been feeling so very ill, totally unable to function, no energy, etc.... Because I have had a total knee replacement in December last year (it has taken me to now to recover because I have rheumatoid arthritis which made it more difficult to recover regarding inflammation, etc.) and I have been "out of action" for a few months, I thought it prudent not to source T3 and add it whilst my body was recovering from a major operation. I am about to have a total knee replacement operation on other knee mid-July... so it will take me a while to recover once more post op... so yet again perhaps not the right time to consider adding T3 as it will need monitoring regularly and I won't be able to drive or go out for quite a while.

However I would appreciate helpful comments so that I can eventually address the T3 problem once for all when I have recovered from second operation. I will have to try and find a decent endo who will be able to help me. BUT where..... ?

Many thanks to those of you who will reply and who have been most helpful in the past.

Best wishes to all.

[SlowDragon Administrator]

Do you know if you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies?

Guessing it is Hashimoto's as you have rheumatoid arthritis and low B12 (is this actually Pernicious Anaemia?)

Assuming it's Hashimoto's, are you on strictly gluten free diet? If not you likely need to try it, but ask for Coeliac blood test before starting

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

There's no vitamin D test here?

Ask GP to test this. Extremely common to have low vitamin D with any autoimmune disease

holtorfmed.com/vitamin-d-au...

SeasideSusie or humanbean know about iron - hopefully they will comment

You are extremely poor converter of FT4 to FT3. You likely need addition of small dose of T3

But vitamin D needs testing first

Gluten free diet may help too

[JGBH in reply to SlowDragon]

SlowDragon, many thanks for your prompt reply. Thanks for all the links which I will look at with great interest.

I actually requested test for VitD... but GP did not do so, instead sneaked an unrequested B12 test! How sly is that? So will ask again for VitD test.

Not sure I have Hashis.... was negative for one antibody but understand I need both antibodies tested. Did have a test for Coeliac and tested negative (understand it is not a conclusive test).

No am not on a gluten free diet at this stage. Because of other problems I already have a restricted diet and I wonder how does one get on with ALL the food restrictions. Am aware I will have to try and see if it makes a difference. Not the time now prior to major surgery. Something to do once I have recovered from it. However, I have read from many people that going gluten free did not necessarily bring their antibodies level down.

Yes I am a very poor converter of T3... but this has been conveniently ignored by GP. Also the thyroid friendly endo I saw last yeat did say I should not have T3... well... it makes one wonder. Indeed I will have to try and include T3 but yet again not so close to major surgery as will create problems for monitoring, so something I will need to do once I have fully recovered: it will take me longer to do so because RA flares up so much post op that my inflammation levels go through the roof, so will need to have inflammation under better control before introducing T3.

As for B12 defciency it has never been officially diagnosed. One wonders why medical professionals are so reluctant to do so, to accept many people suffer from B12 deficiency. However the gastro did say I must keep injecting B12. He also said I did not have PA... because intrinsic factor test was negative, BUT this is another unreliable test... so what to do? One feels defeated by so much obstruction in making a clinical diagnosis.

Thanks again for your reply, much appreciated.

[Marz in reply to JGBH]

Quite a dilemma for you I'm sure. Two things that jump out at me - going gluten free is not just for Hashimotos but all auto-immune conditions. Gluten can cause inflammation which spreads beyond the gut and being gluten free may well help the RA and post op inflammation.

Also I would introduce T3 sooner rather than later. People recover better when T3 levels are optimal and it should help your general well being to have a higher level.

Hope you can soon find wellness 😊

[JGBH in reply to Marz]

Thanks Marz. Yes it is dilemma.... nothing is ever straight forward as you know.

Am trying to build up some strength before my second operation... not long now. I need to stop injections of biologic and Methotrexate (for RA) 2 weeks before op... so RA pain comes back with a vengeance before operation and it takes ages for RA to stabilise post op.... has taken me nearly 6 months, so I daren't introduce any new element to my health condition so close to operation date. It is more complicated in reality than in theory.

However will try gluten free diet anf T3 (if i can find someone who can give me a private prescription: GP won't.... ) after I have recovered from the operation and all the pain it entails. I am so very fed up of feeling half dead.... and unable to have a life. By starting T3 now would mean I would not be able to have it monitored post op for quite a long time as unable to drive for 6 weeks and it so painful to do anything at all. Plus should something go wrong with op recovery then doctors would probably blame T3! Am weary of their ways.... Call me cynical, but so tired of having to fight for everything.

[Marz in reply to JGBH]

I agree with you about the complexities of your condition - but do not quite understand why excluding gluten is a problem. i am sure like me you have read loads of websites and articles about the way gluten can cause inflammation in the gut - and when the gut is inflamed then many conditions arise within the body - including RA and thousands of other auto-immune issues.

Giving up gluten just means eating simple foods - veggies and fruit with protein added to each meal. How can that affect the outcome of your next operation ? - surely having less inflammation caused by gluten has to be a PLUS How are your VitD levels - and how much are you taking ? I have been crippled with pain for almost two years and have recently increased the dose with good results.

Happy to help

[JGBH in reply to Marz]

Marz,

I already have a good nutritious diet: many fruit and veggies (steamed mostly to preserve as many vitamins as possible), eat some lean read meat (mostly steaks) and chicken as well as fish (salmon most of time). I do not have cows' milk (cannot digest it since I was very young). I use unsweetened almond milk. I already have to avoid many vegetables because of acid reflux and to restrict some lovely wholemeal bread and some lovely wholemeal pasta is not something I would like to do at this stage. Am feeling quite stressed as it it. However, I will consider trying going gluten free for a while once I feel less pain and have recovered from a difficult operation... second time round in 7 months... It is worth giving it a try and see whether it will make a difference or not.

I have had RA quick severely since my late 30s.... it is a vicious disease... so any added inflammation (from very painful swollen joints due to OA) send RA flaring up... plus any operation will throw my whole system out of synch... and it then takes a very long time for things to calm down. Plus having no thyroid (since 1980) does not help.... as many people on this site know.

Thank you for your kind advice and support and I will try gluten free diet as soon as I feel able to cope with yet another restriction, a few months post operation once I feel a little stronger both physically and psychologically.

[greygoose in reply to JGBH]

Sounds to me as if you're not getting a lot of fat in your diet - why lean meat, for goodness sake?

What are you doing about your acid reflux apart from limiting your intake of certain veggies?

[JGBH in reply to greygoose]

GG, if you look at my past posts you'll know what I have been doing about acid reflux.When you have had GERD for so long it is difficult to control and I take PPIs. (yes I know about PPIs problems, but not much choice). I avoid many foid causing acid.

I do eat enough fat but am careful about intake of fat. There is a lot of fat in red meat, and I use butter and olive oil. There is fat in salmon, good fat. Too many people eat too much fat and sugars... which is not exactly a good idea. Furthermore, I do not have a gall bladder, so more care regarding fat intake.

[greygoose in reply to JGBH]

Well, I just stumbled on this by chance and don't have time to search through old posts.

You may know about PPIs, but do you know about low stomach acid, which is what you probably have. Rare for a hypo to have high stomach acid.

I don't have a gall bladder, either. It doesn't have any effect on what I eat. If you're just eating the good fats, you don't need to limit them - you certainly can't compare fats to sugar! Not the same type of thing at all. Fat, unlike sugar, is essential for your health.

[JGBH in reply to greygoose]

Yes am aware about hypo and low acid, etc. However it’s a question of being sensible...would rather avoid oesophageal cancer . Again it all depends on level of reflux. We’re all different.

Since my gall bladder was removed I have had problems with fat, so different from you again.

And yes I do understand difference between fat and sugars... and that good fat is essential for one’s health it’s why I avoid very fatty types of food and try and eat healthy fats.

[SeasideSusie Remembering]

JGBH

You have a decent ferritin level but below range serum iron and transferrin saturation, and transferrin quite low in range. Iron is complicated and here are the optimal levels according to rt3-adrenals.org/Iron_test_...

Serum iron

• 55 to 70% of the range

• higher end for men

TIBC (total iron binding capacity) or Transferrin

• Low in range indicates lack of capacity for additional iron

• High in range indicates body's need for supplemental iron

Saturation

• optimal is 35 to 45%

• higher end for men

• to calculate divide serum iron by TIBC

• minimum saturation of 30% required to successfully treat with T3

• Low, beginning doses of T3 can be started with saturation at 25%

Ferritin

• Low level virtually always indicates need for iron supplementation

• High level with low serum iron/low saturation indicates inflammation

or infection

• High level with high serum iron and low TIBC indicates excess iron

• Over range with saturation above 45% suggests hemochromatosis

I don't fully understand Full Blood Count but these need looking into

Mean cell volume: 83.2 fL (83 - 101)

Mean cell haemoglobin level: 25.9 pg (27 - 32) : BELOW RANGE

Mean cell haemoglobin concentration: 311 g/L (315 - 345) : BELOW RANGE

So your iron results and FBC are not straightforward. You need to speak to your GP about all this.

[JGBH in reply to SeasideSusie]

SeasideSusie, many thanks for support and advice as well as link.

Unfortunately my iron level and transferrin saturation level have been quite low (even lower than latest results) for quite a long time but GP is saying I am not anaemic and that I can't expect much because I have RA and other health issues.... Even when RBC were well over accepted range she did not explained anything... blaming my poor health over a very long priod of time and my age! (only 72 not 89!). One would have thought this would be a goodd reason to pay closer attention... they are not bothered, and they are all the same at the practice.

Even haematologists ignored my low levels.... not interested to help me but hellbent on stopping B12 injections when in fact I did not go to see them about B12 deficiency.

Is it just me or is it rather strange that doctors don't seem to want patients getting a better quality of life?.... so distressful when one feels so ill.

[SeasideSusie Remembering in reply to JGBH]

Is it just me or is it rather strange that doctors don't seem to want patients getting a better quality of life?....

No, not just you. My experience is that those at my surgery really don't give a toss about their patients. Best person to see at my practice is the nurse practioner, at least he is willing to listen and have a proper discussion, but he does have to get permission from one of the GPs for certain things.

[JGBH in reply to SeasideSusie]

How frightening this is becoming.... Susie. The nurses at my surgery feel unable to make any decision at all.... For everything they need to have approval of GPs!

One GP does not like me at all because she knows I have fought to obtain B12, writing letters and including copies of research papers.... so I must be seen as an awkward and no doubt difficult and demanding patient!

[Judithdalston]

Was there an explanation by endo re no T3, yet your FT3 is so low?

[JGBH in reply to Judithdalston]

The only explanation he gave me was that so many things were going on in my metabolism.... and I have a complex medical history which makes it very difficult.... He thought adding T3 at that time might make me feel worse.... I must add that my FT3 although low was not as low as the latest results. Yet this endo has prescribed T3 to other people because he felt they needed it...

He said I had CFS ... yes a cul-de-sac category, a dead end when doctors are unable to make any kind of diagnosis, so they put patients in that useless category to get themselves off the hook! So have no idea where I will eventually find a decent and able endo who understands hypothyroidism....

[Judithdalston in reply to JGBH]

Yes I have fibromyalgia, yet another diagnosis of exclusion, but I think it is thyroid related. I can understand why Marz suggests introducing T3 sooner rather than later, but I have found it has had some effect re Bp and pulse at times while introducing it, so possibly not the time to get surgeons, anaesthetists, etc worried.

[JGBH in reply to Judithdalston]

We are all different. Having a complex medical history it is best not to introduce new factors just before surgery. Will look into making changes when fully recovered from surgery.

[SlowDragon Administrator]

It's likely strictly gluten free diet may help reduce inflammation

I think we all found the thought of give gluten up very daunting. But the only way to know is to try it.

I was simply astonished at the rapid improvements. I had absolutely no gut symptoms, thought I had a cast iron gut. I regret the 20 years I accepted the negative coeliac test result as meaning gluten wasn't a problem. Because it very definitely was, since confirmed by endoscopy.

Obviously the knowledge of gluten and gut issues linked to autoimmune disease have developed massively in last 10-20 years.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and reduce inflammation

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Lots of info about rheumatoid arthritis and gluten too

glutenfreesociety.org/glute...

arthritis.org/living-with-a...

everydayhealth.com/rheumato...

Recommend reading Book by Susan Blum "The Immune system recovery plan"

Also this might be interesting (not watched it)

Mark Hyman is excellent

m.youtube.com/watch?v=I8Czh...(Not working as expected?)

[Marz in reply to SlowDragon]

Interesting article about gluten and arthritis - thank you. I will be passing that one to a friend 😊 Read lots about the connection - but not that one !

[JGBH in reply to SlowDragon]

Hello SD,

Thanks again for all the information.

How were you finally diagnosed with coeliac disease via endoscopy? Was it gastroscopy? And how does CD appear in gastrocopy?

I had both a gastroscopy and colonoscopy in May and there was NO mention of coeliac disease at all but the addition of a nodule at the gastro-oesophagal junction. The endoscopy I had last year revealed reactive gastritis (have had GERD for 30 years hence the taking of PPIs, hiatus hernia, and a polyp in stomach wall). I then asked the gastro if I had atrophic gastritis to which he replied I did not. That would explain B12 deficiency which has never been officially diagnosed. However gastro recommended I carry on injecting B12.

I did test negative for coeliac disease earlier this year but understand this is an unreliable test, so if you can tell me what "showed" you had CD via endoscopy then it would be helpful.

GP did not stop B12 yesterday...

[SlowDragon Administrator in reply to JGBH]

I had negative coeliac blood test over 20 years ago. Repeated in 2016, still negative. Went gluten free, out of desperation as had tried everything else. Immediate astonishing improvement in symptoms.

Endo referred me urgently to gastroenterologist who did immediate endoscopy. Biopsy showed coeliac type damage and antibodies.

Gastroenterologist explained, after the endoscopy, coeliac is only one type of gluten intolerance, there are many more, but coeliac is the only one they have a test for. He said even that coeliac test is very unreliable, very often gives false negatives and false positives. Which is why, if blood test is positive, they always do endoscopy to double check. Also explained that vast numbers of people are "silent coeliac" with no gut related symptoms.

Really for their own research, I then had NHS genetic DNA test. It says I am unlikely to be coeliac, but even that isn't 100% definite

Much more info on my profile

I never had any gut symptoms of any sort

[JGBH in reply to SlowDragon]

Will ask gastro whether they have noticed any coeliac disease during my latest endos. Seeing him in 2 weeks. No mention of CD in their report from biopsies though.

[SlowDragon Administrator in reply to JGBH]

Then it's unlikely. But that doesn't mean you are not gluten intolerant

Or alternatively have leaky gut causing gluten to cross from gut to blood stream causing inflammation

huffingtonpost.com/amy-myer...

glutenfreesociety.org/leaky...

health.com/digestive-health...

The only way to know if gluten is an issue is to give it up for 3-6 months minimum

Absolutely strictly gluten free. Watching for cross contamination of chopping boards, shared butter, jam etc

[JGBH in reply to SlowDragon]

I will give it a go when have recovered from my operation. Don't feel I can do this now and when I go into a convalescing home for 2/3 months they would not really follow the diet to the rule, could not trust them to be watchful of cross-contamination...

Thanks again for info.

[SlowDragon Administrator]

Most hypothyroid patients have low stomach acid not high acid

You will find literally 100's of posts about this on here

Gluten free diet helps this too. Must NOT just stop omeprazole or any other PPI's. Has to be done very carefully.

PPI's cause low B12

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

pulsetoday.co.uk/clinical/m...

gov.uk/drug-safety-update/p...

Low stomach acid posts on here

healthunlocked.com/search/l...

[loueldhen]

Within days of going grain free my acid reflux of years and a cough I had for six months disappeared. Gluten free processed food (particularly the bread) is terrible stuff too.

[JGBH in reply to loueldhen]

Thanks, it sounds astonishing. So no more porridge among other things. So what do you replace bread with? Love wholemeal and rye bread....

[loueldhen in reply to JGBH]

I was astonished. You don’t replace bread. You eat differently. Eat bacon and eggs for a few days or an omelette. Or last night’s tea. Eat like your granny did but without the bread.

[JGBH in reply to loueldhen]

NO bread... dreadful. Am afraid I avoid to eat fatty processed foods which contain preservatives, like bacon, etc...

My granny used to eat bread... sorry.

[SlowDragon Administrator in reply to JGBH]

You can eat porridge made with certified gluten free oats

Gluten is in wheat, barley and rye

Suggest reading coeliac Uk website for lots of helpful info and recipe

You can buy gluten free flour in most supermarkets. In the "free from" section

Some gluten free bread is pretty good

M&S brown seeded or their new oaty one.

B Free do good one ( in Waitrose)

They are expensive, but freeze well. Make better toast than sandwiches.

M&S or warburtons "Thins" make good sandwiches

You do really need a separate "gluten free" toaster

Other things to watch out for hidden gluten are for example: malt barley vinegar, bought sauces, beer - but there are now loads of gluten free beers available....even in most pubs.

Wine and cider are fine

If you join coeliac UK you can look up foods on their database

Eg Marmite has gluten in. Sainsbury's own version doesn't

[SlowDragon Administrator]

Forgot to say ....you find certified gluten free oats in the free from section. They must be milled in a gluten free mill and also grown on land that did not previously grow wheat, barley or rye.

Before I made the leap to gluten free I spent a fortnight roughly looking at everything I ate and looking at what were alternative options. It showed just how much gluten we eat. Also went through the cupboards and removed all gluten containing store cupboard items.

The other thing with modern bred wheat, barley and rye is they contain more gluten than old varieties. It's processed and baked differently too.

healthline.com/nutrition/mo...

[JGBH in reply to SlowDragon]

Thank you.