Results - help!: Hello - I've just had my... - Thyroid UK

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Results - help!

19 Replies

Hello -

I've just had my results back. I already knew about the antibodies and tried Thyroxine in 2017 but went a bit hypo on the lowest introductory dose so my GP took me back off (Teva, someone mentioned on here that this particular brand can be problematic). I currently supplement using BetterYou oral sprays (D3 and a multivit which includes B12, biotin and selenium) and have just bought the iron one.

I use a sublingual spray as around 10 years ago my B12 levels dropped through the floor and I was told I couldn't absorb it. They gave me injections for a couple of years then stopped them without explanation.

A subsequent test for PA was negative but the consultant (I paid to see him privately out of desperation) said as I was supplementing with B12 that could mask any issues. I also tested negative for celiac but was avoiding gluten at the time and still am.

I'm diagnosed as having CFS but am not buying it as I since had the tests - after much begging - for thyroid antibodies and here I am. I have psoriasis (started at age 12) and various issues with 'IBS', also gastritis which has joined the party in the last 2 years. I'm just about to start a bit of a candida cleanse (signs of that being an issue too) whilst giving the Autoimmune Protocol diet another go. Anyway, symptoms: palpitations, occasional constipation, indigestion, brain fog, dizzy spells, permanently cold and shivery, random allergies, flaky nails, anxiety, hair not as thick as it once was, crap sleep, heavy periods, and days where I'm absolutely exhausted. I have a lively 6 year old but also a great partner. I don't eat red meat as I really can't digest it - beef especially - and can't take enzymes with HCl due to the gastritis. Quite a list for an active non-smoker or drinker who takes tons of supplements, avoids chemicals and cooks everything from scratch...

I'm 43 and feel 20 years older.

I also live in the Hebrides so we get bugger all sunshine and private consultants are located in Glasgow or Edinburgh (5.5 and 6 hour drives away respectively). Any help would be hugely appreciated :)

ENDOCRINOLOGY

Thyroid Function

THYROID STIMULATING HORMONE *5.85 mIU/L 0.27 - 4.20

FREE THYROXINE 12.100 pmol/L 12.00 - 22.00

FREE T3 3.9 pmol/L 3.10 - 6.80

THYROGLOBULIN ANTIBODY *383.000 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES 14.3 IU/mL 0.00 - 34.00

HAEMATOLOGY

Vitamins

ACTIVE B12 83.200 pmol/L 37.50 - 188.00

FOLATE (SERUM) 4.4 ug/L 3.89 - 26.80

25 OH VITAMIN D 54.7 nmol/L 50.00 - 200.00

BIOCHEMISTRY

Inflammation Marker

CRP - HIGH SENSITIVITY 0.74 mg/l 0.00 - 5.00

Iron Status

FERRITIN 16.7 ug/L 13.00 - 150.00

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19 Replies
diogenes profile image
diogenesRemembering

From your thyroid results you are definitely in need of more thyroid medication. You show the classical signs of TSH modestly above normal, but FT4 and FT3 especially low in range.

The positive antibody result shows you have autoimmune disease of the thyroid so it is not working properly. It will only get worse. There are many sources of T4; some will suit, others not. Its a matter of trying them out. At your age 50 ug T4 should be th absolute minimum as a starter, with rates at intervals under your doctor's advice.

in reply todiogenes

Thank you for all this. I’ll book an appointment with my doctor and hopefully he’ll be on board.

diogenes profile image
diogenesRemembering

Soory, my spellchecker went ape. It should have said "rises" not "rates".

FancyPants54 profile image
FancyPants54

Your ferritin is also very, very low. This will not be helping your own thyroid hormone uptake and will hinder any thyroid meds you take. You say you don't eat red meat. This is a problem for you.

SeasideSusie , as Littleisland doesn't eat much red meat because of stomach issues, can you suggest any supplements that would raise her ferritin for her?

It might be worth talking to your doctor and asking for a full iron panel and if it all comes back low (as I suspect it might) asking for iron injections to bring your levels back up.

SeasideSusie profile image
SeasideSusieRemembering in reply toFancyPants54

Hidden Iron is very complicated and it needs a full blood count to see if there is any iron deficiency anaemia and an iron panel to see if there is any other anaemia. With such a low ferritin I would ask your GP to do these, but he may say he wont because it's within range. If so, ask another GP. Supplementing with iron tablets would be wrong if you have high serum iron, it would cause too much iron which then causes other problems.

I raised my ferritin level by eating liver every week, but it was never as low as yours. I used 120-140g but you can go up to a maximum of 200g. There's also black pudding and liver pate. Another member mentioned the other day that she whizzed chicken livers with mayonaise.

in reply toSeasideSusie

I love black pudding (being a Lancastrian by birth!) and can try to get some gluten free, probably online. Liver makes me shudder - I can eat pate but will try and have the normal stuff. Is it lamb’s liver which tastes less potent?

I’ll see my GP but I never hold out much hope.

SeasideSusie profile image
SeasideSusieRemembering in reply to

Lamb's liver is quite mild, I think it's calve's liver which is the mildest, or maybe chicken liver. You may do fine with black pudding but don't expect it to rise quickly from such a very low level.

You can always do an iron panel with Medichecks (called iron deficiency check), normally £39 but can use THYROIDUK for 10% discount. I know we shouldn't have to do these things though.

in reply toSeasideSusie

Thanks again Susie. I’ve just got an appointment booked for the morning. I really hope he’s open to all this!

greygoose profile image
greygoose

tried Thyroxine in 2017 but went a bit hypo on the lowest introductory dose so my GP took me back off

Do you mean you went a hypER? As you have Hashi's, it could have been that you were having a Hashi's 'hyper' swing, at that moment - you didn't actually 'go hyper'. Did your doctor do a retest before taking you off the levo?

In any case, you do need to go back on it, now, because your Frees are much too low, and far more likely to be the cause of your symptoms than CFS.

Exactly what supplements are you taking? One has to be careful because they might not all be suitable. And, there's certainly no point in taking a multi-vit, they are just a waste of money and could do more harm than good if they contain things like calcium, iodine and copper. :)

Hi, the multivitamin does provide 100% RDA of iodine. No calcium. I just worry that if I don’t use sublingual bits I won’t absorb anything - apparently my gastric mucosa isn’t great and despite a healthy diet I don’t appear to be absorbing nutrients very well.

greygoose profile image
greygoose in reply to

You don't absorb nutrients very well because you're hypo. Hypos very often have low stomach acid, which makes digestion and absorption of nutrients very difficult. We're all in the same boat, here. :)

Your multi-vit may indeed provide 100% RDA of iodine, but on top of that you're getting iodine from your food. You don't want to take extra iodine. With thyroid issues, taking iodine can cause no end of problems.

Apart from that, does your multi-vit contain iron? If so, you won't absorb any of the vitamins because the iron will block them.

Does it contain copper? Hypos usually have high copper and low zinc. Taking more copper is not a good idea. Always have it tested before supplementing copper.

What type of B12 does it contain? And folate or folic acid? What type of magnesium? Multi-vits usually contain the cheapest type of ingredients that are poorly absorbed. You already have an absorption problem, so how is an unabsorbable multi-vit doing to help? You might just as well throw your money down the drain. I'm telling you this for your benefit, not mine. :)

in reply togreygoose

The multivitamin is a sublingual spray as I'm already aware of my issues regarding low stomach acid and problems with absorption (oral sprays are supposed to be better absorbed by some of us as they bypass the digestive system altogether). It doesn't contain copper or iron; I'm not supplementing with iron at all right now as previous attempts have made my stomach feel even worse. Obviously this needs addressing and I'm seeing my GP in the morning.

I didn't buy the multivit *because* of the iodine. I simply mentioned that it contains iodine. I bought it because, knowing I struggle with absorption, it might prove more effective regarding B vitamins, folate (not folic acid) and selenium. I take magnesium citrate separately - Solgar, so a good brand. Also zinc citrate from the same brand. Vitamin D via an oral spray.

Believe me - I do have some knowledge around this but simply needed some guidance. My health problems have plagued me for decades and having navigated my way around exasperatingly unsympathetic and sometimes downright clueless GPs and the odd endo, functional practitioners (all of whom are paid to know about this stuff but I've had to come this far on my own) and no end of books and websites, I've picked up some knowledge along the way. But it's an extremely complex picture. In addition to GI issues (I'm currently awaiting an appointment with a consultant after yet another endoscopy) and autoimmune conditions - the Hashis is why I'm here - it seems like I'll never untangle this mess. Knowledge is a great thing but ultimately GPs are the ones who can help or block my efforts. I genuinely can no longer afford to see anyone else privately. It's been a financial strain and an emotional one and there's still no resolution in sight.

This group is incredibly supportive and informative which is why we use it. A more gentle approach in your response would have been appreciated though - it's a tough time as I'm sure you know as someone who also has thyroid problems. Thank you for your comment.

greygoose profile image
greygoose in reply to

I'm sorry you don't find me gentle enough, but I was just reacting to the information you gave. And saying 'multi-vit' starts alarm bells ringing. Sounds more like a B complex, but you didn't actually say what it was, and I was just trying to help. I am not a touchy-feely type of person, and I'm not going to play act. I shan't force any more of my 'help' on you, so don't worry about my insensitivity any more. Although, I would just say that inquiring about your nutrients is all part of helping with your Hashi's. Good luck.

in reply togreygoose

Your help is genuinely appreciated - and I'm not a 'touchy feely' person either. Trying to put this jigsaw together is proving very difficult and I'm constantly worrying that my little boy will have inherited this from me. It's a big source of stress and the thought of trying to present all this to my GP in the morning fills me with dread as I suspect from previous experience that I'll get nowhere.

Anyway, thanks again for your suggestions.

greygoose profile image
greygoose in reply to

I understand. I have three children and five grandchildren. So far, only one of them seems to have inherited it. But, there's no point in stressing about it. What will be will be. And, hopefully, but the time your little boy shows signs of having the disease - if he ever does - things will have improved. Don't stress over going to your doctor, he will only give you a 'diagnosis' of 'anxiety' or 'depression', which won't help your situation at all. Try to be calm and rational in your presentation. Make a list of your symptoms, and everything else you want to say to him, for reference. That usually helps. And, if the worst comes to the worst, and he's obviously unable or unwilling to help, there's always self-treating to consider. We should not be held up ransom by ignorant doctors. And if we know we can go it alone, it can affect the way we approach them. Once again, good luck.

humanbean profile image
humanbean

I don't eat red meat as I really can't digest it - beef especially - and can't take enzymes with HCl due to the gastritis.

Just a tip... It is possible to buy digestive enzymes without HCL in. I have gastritis too, and can't cope with acidic supplements. I can't even tolerate vitamin C very often, because it is an acid.

in reply tohumanbean

That’s why I don’t take it! I’ll look for some enzymes. Apparently Udo’s Digestive Enzyme Blend doesn’t contain HCl so I’ll order some. This whole thing - private consultations, the travel, books, tests, tablets - has cost me so much money ☹️

humanbean profile image
humanbean in reply to

I can empathise and sympathise about the money!

SlowDragon profile image
SlowDragonAdministrator

Your folate is very low

B12 and folate on the 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

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).

Or Jarrow B-right is popular choice, but is large capsule

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...

Vitamin D is far too low. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average . ..... perhaps 3000iu daily

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

Gluten free diet is almost always low in magnesium too

thespruceeats.com/gluten-fr...

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

sciencedaily.com/releases/2...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

This article explains should discuss with specialists before taking any vitamin K if you take any blood thinning medication

drsinatra.com/vitamin-k2-su...

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