Thyroid UK

Daft questions!

I was a bit reluctant to write a post as everyone seems to be talking a language I don’t yet understand. Here goes. My blood results have been coming back as problems with thyroid since 2015. GP repeats test and they seem to have settle. This has happened three times. Each time raised next time normal. Then they forgot about me.

I suffer from Chrohn’s and have started having infleximeb infusions every 8 weeks. I’m exhausted all the time. ( this is probably the Chrohn’s ) I went last week and asked if they would do a full screening including my thyroid tests. I actually got a printed copy of the results. Looks like they just did antibodies. My query is will the infleximeb affect the results.

I feel a bit fobbed off. Sure they think I’m a drama queen or maybe just annoyed that I kept saying I wasn’t right. They blamed hormones and depression when actually I was ill.

Any advice appreciated.

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Crohn's is presumably very likely to trash your vitamin levels. What, if anything, do you supplement?

Marz has Crohn's too, she may have some tips

For full Thyroid evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Post results and ranges of any you already have and members can advise

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting. This gives highest TSH and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

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Doubtful the infleximeb would affect the antibodies. So, what was the result?

All these - presumably - TSH tests they've done, were they all done at the same time of day and fasting? TSH is highest early in the morning, and drops throughout the day. It also drops after eating. Do you have the actual numbers of the results? We can only help you if we have all the details. :)

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Wow so many responses bit overwhelmed. Thanks. My last blood tests were as follows:

HB 118 ( range 120-160)

Ferritin 7 < 20 shows deficiency

B12 513 (115-1000) though I have B12 injections every 8 weeks

No vitamin D only thyroid test was TSH 2.6 ( range 0.35-4.7) wasn’t told to fast but never eat breakfast!

I’m not taking any vitamin supplements as they really upset my stomach. Including oral ferritin. Had 2 iron transfusion last year but it still falls. I don’t absorb much as I have had my colon removed and now have an internal pouch. After reading advice on here I’ve just stated a gluten free diet and trying to improve my gut biome. I’ve been ill for years yet I’ve learnt more on this site then 25 years of hospital and doctors appointments.

Which tests if any do you think I would benefit from?

Issy

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Why don't they continue with the iron infusions because your ferritin is really much too low?

You may not eat breakfast, but you didn't answer my question : were all the tests done at the same time of day. If not, then you can't compare them. :)

SlowDragon tells you all about the tests your need.

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They won’t give me another transfusion as they said my haemoglobin isn’t low enough! Had to wait until it dropped to 8 last time

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Good lord. That's terrible. They really have no idea!

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Hello issy carter, no question is a daft question and we all had to learn about all this ! I suffer with hypothyroidism, Addison’s b12 and vit d deficiency it took me 2 years to get diagnosis so it may take some continued calls and requests to speak to an Encrinologist just keep phoning !!! If things are that bad and you cannot live as they are ( I couldn’t function so needed to get help ) today life is manageable and despite these conditions I have a pretty good normal life! Good luck I know it’s not easy when you feel like crap but it does get better hang in there 👍👍👍

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Thanks. I feel so much more positive now. Knowledge is power ! My GP will hate me more 😂🤷‍♀️

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whilst the exhaustion could be crohn's it could also be a number of things.

crohn's is one of the known causes of B12 absorption problems, leading to B12 deficiency - lot more on that on the PASoc forum, - PA being the most common cause of B12 absorption problems

healthunlocked.com/pasoc

have you had vitamin and mineral panels done as part of on-going monitoring. Unfortunately some of the tests require more interpretation and context than most GPs realise, eg serum B12 requires looking at symptoms to get the full picture.

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Hello Issy sorry to hear about the Crohns, my Dad has that and I am hypo with TPO antibodies which can cause your TSH to go up and down. You will get lots of good advice from here but you do need to let us see your blood test results. You are legally entitled to your results from GP surgery. If receptionist is awkward speak to practice manager.

As already stated if you have antibodies and also Crohns your vitamin and mineral levels will be trashed. Any thyroid medication will not work properly until our vits etc are at good levels.

Dad and I are both gluten and lacto free and it certainly does help. I strongly recommend you try that too. Also once you have your results Seaside Susie on here gives excellent advice about which supplements to take and what dosages.

Don't expect any instant fixes, it can take months but come back here as often as necessary for advice.

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Hello, my GP suspects that I'm coeliac (I appreciate it's not the same as Crohns) as I've had far less severe symptoms since giving up wheat / gluten. This helps explain my previously low b12 and iron blood results.

Ferrous fumerate is something I'm tolerating better than the old sort (sulphate) - taking two spaced out in the day is nigh on impossible, so I limit to one with vit C and I'll take a break from the tablets and eat liver which will keep me going for a few days. Regular milk (especially low fat) makes me nauseous, so I limit dairy as well.

I agree with SlowDragon that you should ask for the full picture of where you're at with bloods, so if they say 'you're in the normal range' which in reality could mean anything from extremely sub-optimal, you can at least help yourself if you're low in range on vitamins / iron. Never let them get away with saying - you're just depressed - as you say, it's a physical problem with a few psychological symptoms among a load more that aren't!

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Have you tried Arla lactofree milk and cream? They also do a butter spread, cream cheese and cheddar. I am fine with organic butter and hard cheese such as parmesan and manchego. Use arla milk or almond or rice milk for cereal.

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Yes I tried, and there was some improvement - I'm not sure what was happening to me but I found I had less foggy-brain and candida (it's been a problem on and off) on milk alternatives - could have been a gut bacteria issue or casein. Butter and old hard cheeses are ok and clotted cream. I like nut milk (unsweetened) but gave up cereal for porridge (and eat it in the evening).

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Not tried them but will. I’m doing a gut diet that is initially gluten and lactose free so be interesting to see how I get on.

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Just wanted to say that I still feel it's a language I don’t yet understand four months on! Don't fret, it's not just you. It does get a bit easier. Hope you get the answers you need :)

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Thank you so much. This year I’m determined to take control of my health. Been passive for too long.

This site has really helped. Glad I found it. 👍🏽

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Rah!

Yes, it's a fab site :D

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Hello Issy,

I am Hashimoto's, I am also Coeliac and I have a huge list of food intolerances that even of late have included rice! Earlier this year I too thought I might have Crohn's, though I have been told this is not the case.

As our nutrients are essentially absorbed in the gut, if the gut is damaged, not functioning or impaired in anyway then it stands to reason we will not absorb neither the nutrition nor the vitamins that we need as essential for correct endocrine function apart from anything else. So we need to do everything we possibly can to heal our challenged gut biome- in other words re-introduce all the wonderful little bacteria that should live in coexistence and harmony with us. Any number of things but in particular the loss of our appendix or considerable repeated use of antibiotics without adequate post-usage probiotic re-seeding therapy will, eventually, cause serious problems for of gut biome.

Through a friend I heard that a very knowledgeable acquaintance of her's who is himself a Professor who has worked in the poultry industry as an advisor on Poultry health with regard to studying the optimum gut biome for chickens, discovered something that surprised him greatly. Just for curiousity he had his own gut biome analysed. He considered himself to be pretty healthy, being a non smoker nor a drinker, he had no significant digestion issues, but was curious nonetheless. He was curious because he knew how vital a healthy gut biome was for the chickens so he assumed it would be so for us humans too. The average healthy human gut biome, I was told needed to have more than 300 different bacteria present. To his shock he discovered his gut biome only contained 92 different strains.

Well, if he still felt he was pretty healthy and doing well on 92, I fear I may be lucky if I have 10!!! Some days I feel even that might be optimistic!

However, things are changing for me, for the better..... Since I started making and drinking my own probiotic, non dairy, organic coconut sugar water Kefir.

Logically, if we can repopulate our depleted, not say 'nuked' gut biome with new, healthy bacteria, I believe we can stand a good chance of heaingl the gut.

As 80%of the immune system is housed in the gut, there is no wonder that we all fall prey to all manner of autoimmune conditions when our gut biome breaks down. Nothing but havoc will arise from an immune system that is spiralling out of control, attacking anything and everything within us!

So, if we can re-introduce the beneficial bugs in the form of certified live probiotics, to the tune of billions and billions worth, to redress the correct balance, thereby helping to repair our leaking gut, not only will we help to stop alien particles going through the perforated gut lining itself straight into our bloodstream, which in turn helps to trigger these massive autoimmune responses, but we will help our repaired gut to absorb correctly the nutrients and vitamins we need and to function correctly!

Everything everybody else has said to you is very valid and totally correct. Do follow their advice.

However, my point is that you can also actively do something for yourself, on a practical level in an attempt to improve your tricky situation with your gut Biome.

Start by making your own live Coconut water kefir. You should keep a diary as you will be delighted with the steady improvements- too many to mention here in this post.

If you would like full instructions and receive some of my beautiful, activated grains, please private message me and I will do so. They grow exponentially, so I have plenty to give away. I am more than happy to advise somebody else on how to benefit and how to improve their gut Biome.,😃

Best Wishes

Poppy the 🐈

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I would love to hear more about gut biome. I believe it’s the answer to many of our problems. Thanks for the info

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Been there. It's not good that when you are at your lowest and vulnerable you are fobbed off. My main advice would be to take a friend with you to consults to back you up! (As well as get your blood tests). Beginning to think we need a network of people to accompany others to check ups!!

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Hi 👋🏾 @Issy, a little reminder that this is a support site. Feeling like you cannot ask about your health and life should NEVER be an option you should feel uncomfortable with. If you don’t speak a language and need to, take steps towards understanding and you’re halfway there. Give yourself a high five from the rest of us and know that you are welcome with open arms. Fire away with the questions, we’re here to help and when your confident enough, maybe pay it forward and help others later down the line that are new to the site as you are now. We’ve all been there. In other words - pull up a chair and next time bring (gluten free) cake) 🧡

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Thank you. Great site. It really is good to talk to so many people and get great advice.

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fire your doctor and get another Doctor that will take you seriously!!

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I feel like everyone is talking a different language as well. Not the thyroid terminology, but the other expressions. At least you have those down :) Fobbed off, daft...great expressions we just don't hear in the US :)

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Ha ha. I have some great Yorkshire expressions that people from the rest of the country don’t understand 😂🤦‍♀️

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The one issue no one is thinking about is cookware

Far far too many people use aluminium , tefal, non stick coated, foil cookware

They are lethal and cause symptoms just like Crohns and a lot more besides

Be very very sure to double check everything and only use

Stainless steel or unchipped enamel , or glass / pyrex or cast iron

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