Hashi's questions

Hi

Sorry for posting again but I have a few questions. I've had two tests three weeks apart.

14/12/16 taken 1pm fasted 18hours

TSH 5.03 (0.27-4.2)

H

FT4 14.52 (12-22)

FT3 5.43 (3.1-6.8)

04/01/2017 taken 8am fasted 16hours

TSH: 4.77 (0.27-4.2)

H

T4 Total: 77.2 (64.5-142)

FT4 12.57 (12-22)

FT3 4.96 (3.1-6.8)

Anti-thyroidperoxidase abs 80.6 (<34)

H

Anti-thyroglobulin Abs 565.1 (<115) H

Vit D (25 OH) 20 (Deficient <25) L

Vit B12 238 (Deficient <140) (insufficient 140-250)

L

Serum Folate 8.31 (8.83-60.8) L

Ferritin 188.9 (20-150)

H

CRP 11.30 (<5) H

I just have a few questions as I'm going to see a new GP I have just registered with due to a bad experience with my old one and want to be prepared for my appt.

Firstly, when is the best time to do the blood tests? I was advised best fasted and first thing but my afternoon TSH results were higher even tho FT4 and FT3 were higher too? Is it different with Hashi's?

At the first test I was starting to feel as though I had a bit more energy though I had just started a new job with less travel and less hours so I put it down to this and started to think it was all in my head. At the second test I was still feeling ok-ish - at least better than before when I had months of sleeping 12 hours then waking and needing a 2-3 hour afternoon nap followed by another 12 hour sleep. After the second test I have started to feel really crap again. I did return to work since too though only 2 days this week (bank holiday and I work part time as it exhausts me) But today I'm back to 12 hour sleeps with 2x 2-3 hour naps today) I'm nakard now and could have easily gone to bed 3 hours ago but I've been reading up on everything and have wrote this out twice because my internet decided to update and close itself grrr. Anyway is it normal to have waves like this? Is it better to wait to do my blood tests when I'm feeling my worst if I want treatment?

I've been reading about flare ups in people with hashi's. Is that was this is? How do I know when it's going to happen and how long do they last?

Do you think considering my thyroid levels aren't that bad that my symptoms are more likely to be from the deficiencies and should I be addressing them first? It's so hard to know when they all seem to cause similar symptoms to each other!

Should I be pushing to start levo now or try gluten free first? Or is gluten free for as well as levo not instead of? We want to TTC in the next year or so and I've read untreated hashi's is riskier in pregnancy. And considering my periods are now really light and irregular I think will be harder to get pregnant anyway. Should I tell my GP we're planning to persuade her to treat?

Is there any way to know how far along you are from hashi's reflecting in your thyroid levels? I've been feeling crap for atleast 2-3 years already now I don't want to just sit back and wait whilst I get worse. But i'm worried she won't treat me with my thyroid hormones seemingly hanging on in there! My dad didn't start with symptoms or get treated till his mid-late 40's - I'm 24.

Finally, where should I be feeling for my thyroid exactly? Would an enlargement be really obvious? I feel like I've got a lump in the bottom of my neck. I don't think it's my adams' apple I think it's below that but it all seems to be merged to one big lump. But since I didn't feel it before I felt poorly I wouldn't know if that was normal. I get sore throats a lot, since having glandular fever and recurrent tonsillitis throughout my teens it gets sore every time I feel run down. My GP once told me it was just a weak spot for me. I wake with a sore throat every time the window is slightly open over night or if AC is on somewhere or when I get really tired. It always feels like there's excess mucous (sorry) at the back that I can't get rid of. Only when I brush my teeth I clear a lot every time but it still feels like there's more there that I can't clear or swallow. Also when i'm lay in bed in certain positions it can feel like my throats closing up and if in a position where the pillow is touching/slightly pressing my neck I occasionally make an involuntary noise when breathing out that sounds as loud as though I'm speaking and wakes me up. I've never snored or sleep talked or anything like that. I also frequently get like a sharp itch that makes me cough a lot (kind of like something has touched my throat but I don't know if i'd be able to feel that or I'm just paranoid now.) Would it be really obvious if my thyroid was enlarged? I had put it down to the weight gain and thought it was because of my new second chin! :(

I think that's all my questions for now, sorry.

Thanks for any advice :) x

50 Replies

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  • If you are looking to get pregnant, it is better to treat. Pregnant women with Hashimoto's have risk of miscarriage.

    Your TSH is high, and you have high antibodies, particularly Anti-thyroglobulin Abs at 565.1, which is very high. If I were your doctor, I'd be checking you for thyroid cancer. I don't know how a doctor can ignore your lab values and not treat you, or not order further tests based on your lab results and symptoms.

  • Thanks for your reply. I'm not looking to get pregnant right now but we were planning to start trying at the beginning of next year. But as I've heard it can take a long time for levo to start to work I was wondering if I should push for it now instead of waiting until my tsh gets higher and thyroid hormones get lower.

    Should I be worried about cancer? To be honest I hadn't even considered it because my dad has Hashi's I just assumed it would be that. How would I know the difference if it was thyroid cancer are there any obvious symptoms different to hashi's or do I just need to ask for further tests? X

  • With Hashimotos it is imperative that you are 100% gluten free! I'm also better off the nightshades, potato, tomato, aubergine...

    You are still undermedicated, your TSH needs to be under 1

    The other numbers I'm less sure about but other people will comment.

    A lot of us self medicate with Natural Dessicated Thyroid as just T4 supplementation (levothyroxine) for most is not good enough some don't convert T4 to T3 and T3 is hugely important. You get all the T's with NDT so makes complete sense.

    You also need vitamin D supplementation

    B12 jabs if dr will give them or if not supplementation.

    Folate is low

    CRP shows a lot of inflammation but that goes with Hashimotos and will come down when you go gluten free.

    Dr Datis Khazzarian (Hashimotos god) has great books.

    Kris Kresser website.

    Susan Blum The Immune System recovery plan.

    Good info here for Hashimotos and pregnancy. Don't worry yourself too much though I had two children and was oblivious to the fact I had Hashimotos but good to know all the info.

    hypothyroidmom.com/hashimot...

    Research Leaky gut.

    I've found if I have a smoothie every morning with fruit, greens, turmeric, cinnamon and collagen protein powder it helps with inflammation and I'm sure is healing my leaky gut as the odd time I eat something bad there's less of a reaction. Although Christmas was bad so I'm seriously struggling this week!

  • Thanks Kate.

    Do I try gluten free first before levo or do i need both?

    Sorry meant to say I'm not medicated at all yet. I only got my results back on weds and my gp was horrible about the private tests so I've registered somewhere else hoping to get someone better next week.

    Also reassuring to know about the pregnancies glad all went well for you :) x

  • Yes both. A lot of GP's just have no idea or don't understand thyroid at all sadly.

    If you can afford to you could take Natural Dessicated Thyroid. There's a lot of information on thyroid uk. If you're unsure of that and want to medicate under a GP to start with then they will give you T4 (levothyroxine)

    This will help whatever but in the future you may want to add some T3 as a lot of us don't convert T4 into T3 which is what we need or switch to NDT as this has all the T's.

    NDT has helped to bring my cholesterol down, address excess weight and generally make me feel less exhausted and ill as long as I stay gluten free too. If I eat gluten I end up feeling like I've had flu and bloat hideously.

    See how you go and read all the info you can.x

  • I will thank you. Hopefully she will give me the thyroxine even though my tsh is only slightly raised and others in range.

    I can't really afford it right now but then I couldn't really afford the private blood tests either. If I need it I need it and we'd make it work. It's my health at the end of the day. But I would feel better to be under a gp and try thyroxine first especially whilst I sort my deficiencies as it feels like a bit of a mind field where to start.

    Saying that. How much is ndt on average just out of interest? x

  • I got mine from Thailand and it was about £40 for a years supply. They seem to have stopped selling on Amazon but there is a Facebook page for Thyroid S

    Yes get your deficiencies sorted, you will feel much better!

    TSH should be under 1 to feel well and better for pregnancies.x

  • That's not bad I could afford that :)

    Thank you x

  • Me again!

    Really good information here and all the worlds experts on thyroid and Hashimotos. Really worth getting if you have the funds. X

    healinghashimotossummit.com/

    Keep scrolling!

  • Sorry just re-reading replies as just got back from seeing new GP.

    what are nightshades? x

  • Potato, tomato,aubergine.

    Potato makes my joints really hurt and tomato causes really bad mouth ulcers.

    Bizarre.

    How was new GP?

  • That's weird! To be honest I haven't really noticed any effects from any particular foods. Yesterday I had chicken pie topped with with mash(no pastry) and veg and chicken and pesto salad sandwich with tomato but don't feel any different that usual. (Other than a full body rash but I had that before eating anything) I guess because they're things they eat regular I'd have to cut them all out for a while and reintroduce to see if i felt any different.

    GP was ok thanks. Didn't get a script for levo but much better than my other one. At least she listened to the blood tests. She said she wanted to start the supplements first as all my symptoms can be caused by the deficiencies and since my T3 and T4 were ok she didn't want to start everything at once. She said we'd have to repeat the thyroid bloods in 3 months anyway and could start a trial if the vitamins don't make me feel better. I then told her I was planning pregnancy in the next 1-2 years and she agreed that its best to have good tsh in pregnancy so can start a trial after starting the vitamins because if we did all at once we wouldn't know what was causing or improving what.

    So no medical exemption for me yet either which means I've just spent £35 in prescription charges :(

    She's given me Hux D3 to be taken twice weekly for 7 weeks

    Folic acid to be taken daily and put on repeat prescription for 3 months

    Hydroxocobalamin injections to have 6 over the course of 2 weeks initially then reduce to one every 3 months but the nurse can't fit me in for 6 appointments over 2 weeks yet so I can't start them until 27th january.

    She's then given me cream for the rash and dry skin.

    She then said could check for pernicious anaemia and next blood test and would ask her nurses to see if they can do it from my hand to help with my phobia. If not she's happy for me to continue with blue horizon :)

    So apart from the wait to start levo it was a fairly positive appt x

  • Shame they're making you wait for Levo as your TSH is higher than optimum. We need it under 1 to feel well and especially for pregnancy. Still good re starting on supplements!

    I know with the vit D I was advised to take K2 along with it as this helps the vitamin D to be taken to bones rather than arteries.

    articles.mercola.com/sites/...

    I'm not as good at reading results as others do I'd post them again with title help in reading results then hopefully the clever ones will comment!

    Really glad your starting on the road to recovery

    Lucky you re food! Not many people with Hashis can eat what they want. Some of the tiredness may be gluten related though, I feel like I've had flu if I eat it. Fingers x for you though.

    Don't forget to read Dr Datis Khazzarian books or articles on website. X

  • I have hash is and currently on levo 50. I have been quite poorly over the last week with a virus and ended up in A&E. As if by fate at the hospital the doctor treating me informed me he has Hashimoto's and was diagnosed 3 years ago and takes levo 150. I asked the doctor tons of questions about gluten and supplements etc, his response to me was that gluten free is good if your tests show you have an intolerance and the same with supplements if there is a deficiency. Other than that going gluten free will make no difference to Hashis. The doctor did explain it was likely to take between 6-8 months before I start to feel better as I've had hash is a long time before being diagnosed. I eat a healthy diet, I avoid caffeine, alcohol and do not smoke. This doctor said to me that the gluten free diet for Hashimoto is rubbish and would make no difference. Feel free to give it a go and please update me if you have any miracle reverse of symptoms but I'm going to believe the doctor on this one.

  • I think a lot of members would disagree about going gluten-free as it helps to reduce antibodies which attack the thyroid gland.

    Hashimoto's is also called an Autoimmune Thyroid Disease.

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

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

  • I completely disagree with that ChrissyS. Gluten free makes a huge difference. Tests show that nearly 100% of people with Hashis have leaky gut.

    Check out Dr Datis Khazzarian Hashi's expert and Kris Kresser website.

    Maybe you're in the under 1%!

    If you suffer from any stomach pain, inflammation, joint pain, or have antibodies it would be worth giving glutenfree a go.

  • Thanks Chrissy. I will do my best but have to be honest going gluten free will be hard for me. Mostly cause I like pasta and usually grab a quick sandwich between seeing patients at work but also because other than that and flour I don't really know what it's in. I'm like you don't have alcohol or smoke and I think fairly healthy diet. I do have caffeine but only in a small children's bar of kinder (milk/white) chocolate I don't drink coffee or coke or anything like that. I don't have cakes or biscuits or anything so the weight gain has been a bit of a puzzle for me. X

  • When you have a slowed metabolism you have to make every calorie count in terms of nutrition, so a nutrient dense, low sugar diet will help with health and weight.

    The only way to know if you are gluten intolerant is to cut it out (gradually over a couple of weeks so it isn't a shock to the system) and see if your symptoms improve. Most people aren't aware that they have a problem with gluten until they try cutting it out. Can make a dramatic difference to symptoms so well worth a try.

  • Thank you. I've just got back from the gp with supplements so I'll start GF once on the vits so its not all a big shock to the system :)

  • Right. Your deficiencies are wholly related to your thyroid and your TSH is high for a thyroid patient, low for a healthy person.

    So step one. Your Antibodies are sky high, you have to calm them down.

    Are you gluten and dairy free yet?

    Step 2 that vitamin D deficiency can make you feel dreadful. Get some 5000 I.U from Biovea.com and take one a day

    Vitamin C 2g. Day

    And a good multivitamin like centrum woman to sort out the rest

    Selenium

    B12

    Folate

    You can start supplementing these individually when you've sorted out the D which needs to be at 80 for you to feel well according to DR Peatfield's book.

    Dump the flouride toothpaste for sensodine classic which is flouride free

    Stop drinking mineral water swap it for filtered water

    You could try a drop of Lugol's iodine a day

    I would say the reason you felt worse on the second test was that your vitamin D fell even more.

    When I was diagnosed me mine was 13, and like you I was napping and couldn't work.

    It's now 100 and I am pretty well. Working full time again.

    Trying to get pregnant now would be daft, you need to sort your autoimmune stuff first. You can do this. 6 months of really careful diet and supplements, kick the antibodies into touch.

    Good luck

  • Thank you. Technically I'm not currently a thyroid patient. So so I need to address the above before getting thyroxine treatment?

    I wouldn't try to get pregnant yet. We were planning to start trying beginning of next year which is why I was wondering since it can take a long time to start to work. Do I need to push for thyroxine meds now or is the diet and supplements enough for now and for pregnancy?

    Thanks again x

  • Salphy I'm not going to add anything to the lengthy replies I gave to your previous post as I said it all there, and most of it has been repeated in replies from other members here.

    But what I will add is *do not* take any iodine supplement unless you have been shown to be deficient by testing. It should only be supplemented under the guidance of an experienced practioner and then it needs to be balanced with selenium. But, most importantly, you should not take iodine if you have Hashimoto's as it stimulates TPO antibodies and increases the attacks

    hashimotoshealing.com/hashi...

    As far as gluten is concerned, you say that other than pasta, bread and flour you don't know what it's in. As far as processed and packaged food is concerned you read the labels and it will be on there. Easiest way is to prepare your own food from scratch. Sandwiches can be replaced with rice cakes and other gluten free options available or box up a salad with tuna, egg, cold roast chicken, etc. There is so much evidence that adopting a strict gluten free diet helps so many people with Hashi's that it really is worth making the effort.

  • Thanks Susie. Yes I really appreciate your other replies and will be following all the advice with supplements once I've seen my new gp. They are all in my Amazon basket ready to go.

    Though I genuinely fully appreciate all the advice and replies on here I didn't really ask about the supplements again other than if it's more likely my symptoms are from the deficiencies and need addressing before pushing for levo.

    My main concern it that she won't put me on levo with my thyroid levels not being that bad. So I wanted to know if I needed to push for it now or if considering it's not affecting my thyroid levels that much then I should hold off and try gluten free etc first. And that if planning pregnancy in the next 1-2 years makes it any more important to push for Levo now?

    My other questions were more around when to do blood tests as my levels were higher on the afternoon test?

    And why my symptoms seem to come in waves when I've had a few weeks of feeling OK when my tests were done and now feel completely drained again? Is it normal with hashi's or down to changing jobs and being off over Christmas? Is it best to wait to do blood tests when feeling my worst?

    Then finally about feeling an enlargement. I watched a few YouTube videos last night and it seems like what I was feeling as my Adams apple is actually my thyroid so confused me (easily done :))

    Thanks again. X

  • With Hashi's symptoms fluctuate, as do test results, it's the nature of the beast and it's unpredictable.

    I think I may have mentioned in your other thread about Dr Toft recommends starting Levo when Antibodies are present to 'nip things in the bud' which will be in the article I probably suggested obtaining from Louise. You need to use that to persuade your doctor to start Levo.

    You have Hashi's, no doubt about it, it needs treating before it develops into full blown hypothyroidism and causes you more problems. The low vitamin and mineral levels are something most of us Hypos have and need to address, they're not causing your Hashi's symptoms.

    As for timing of blood test, first thing in the morning, fast overnight (water allowed). That is when TSH is highest. And when you're on Levo then that needs to be left off for 24 hours when having a test. You may have had a high afternoon TSH before because of the Hashi's.

    And planning for your pregnancy, if you don't want to go through the misery of multiple miscarriages like my daughter in law, then work towards getting on top of this, address the Hashi's with doing all you can to reduce the antibodies, get that TSH down to below 2 and optimise your nutrients. When you do get pregnant learn what is needed to carry your baby safely through your pregnancy and fight for it. I have 4 grandbabies who didn't take breath and there really is nothing worse than seeing a tiny white coffin being carried down an aisle in church by two young, distraught parents.

  • So sorry for your families loss :(

    I've just been to see my new gp and though she doesn't want to start levo yet but she was more willing once I told her I wanted to get pregnant in the next year or so.

    If you don't mind would you be able to advise on the supplements she's just given me? When to take and what else I need to do or if it's best waiting out and starting these first before doing anything else?

    Thank you x

  • It sounds as though you have got her on side perhaps :) . When will she start you on Levo? Don't allow her to make you wait until you get pregnant.

    Marz made a post earlier on with a link to lots of thyroid related articles. I haven't read them but I did notice one about thyroid autoimmunity and pregnancy drruscio.com/thyroid-autoim... and a few others, do have a look through, there might be some essential information which you can use:

    whitelotusclinic.ca/blog/dr...

    whitelotusclinic.ca/blog/dr...

    whitelotusclinic.ca/blog/dr...

    So, let's see what supplements she's given you and we'll see if she's on the right track :)

  • Thank you :)

    She said she wanted to try the supplements first because all my symptoms could be caused by the deficiencies and she didn't want to start everything all at once as then we wouldn't know what had caused and what had improved what.

    She did agree that with the antibodies I would most likely develop hypo and she also confirmed my dads history of hypo and vit d deficiency so I don't know about having her on side but at least she was listening :)

    I then told her I was planning pregnancy in the next year or two and she agreed it is best to have good levels in pregnancy so once started on the vitamins we will retest thyroid levels and if still the same can trial levo. She also said regardless would need to retest thyroid in 3 months.

    She then said with the b12 it could be pernicious anaemia as I confirmed no reason with my diet for the deficiencies so said we can test for that in the next bloods too and she will ask her nurses if bloods can be done from the hand to help with my phobia. Otherwise she's happy for me to continue with blue horizon tests aslong as i send them a copy of the results :)

    She's given me Hux D3 20000 unit capsules to be taken twice weekly for 7 weeks

    Folic acid 5mg to be taken daily and put on repeat prescription for the next 3 months

    Hydroxocobalamin injections to have 6 over the course of 2 weeks initially as loading dose then put on repeat prescription for one every 3 months. The nurse can't fit me in for 6 appointments over 2 weeks yet so I can't start them until 27th january.

    She's then given me dermacool cream for the full body rash I came out in yesterday and said it will help the dry skin.

    She said to go back and see her in a month to see how things are going or if i start to feel worse or poorly with the rash. I think I'm going to give it 6 weeks then take another bh blood test but not really sure what to do given that my d3 will run out in 7 weeks but i'll only have had the b12 injections for 4 weeks with them not starting yet.

    Do i still supplement with others or just get on with this for now and see where i'm at with a retest in 6 weeks? Also is it worth starting b12 supplements for these two weeks or just wait for the injections?

    x

  • OK, I'll copy and paste your vitamin and mineral results, saves me scrolling back up and down.

    I'll put my comments in italics

    Vit B12 238 (Deficient <140) (insufficient 140-250) L

    Serum Folate 8.31 (8.83-60.8) L

    These are unlikely to change significantly so she really does need to test you for Pernicious Anaemia. When are you having this done? Surely she's not waiting 3 months for that?

    Please read what NHS Choices has to say

    nhs.uk/Conditions/Anaemia-v...

    (click along all the tabs at the top too), so that you can discuss this with your GP.

    Even though your B12 isn't in the Deficient category, your Folate is under range and needs to be taken seriously.

    You have said:

    "Folic acid 5mg to be taken daily and put on repeat prescription for the next 3 months.

    Hydroxocobalamin injections to have 6 over the course of 2 weeks initially as loading dose then put on repeat prescription for one every 3 months.

    The nurse can't fit me in for 6 appointments over 2 weeks yet so I can't start them until 27th january."

    I don't see the point in starting any supplements until your test for Pernicious Anaemia has been carried out. I would not start any supplements for B12 or Folate until you have the results of your GPs test.

    You can pop over to the Pernicious Anaemia Society forum here on Health Unlocked, and get further advice on this -

    healthunlocked.com/pasoc

    If they confirm not to start your injections or folic acid until after the test for Pernicious Anaemia, get back on to your doctor and tell her you have taken advice from the Pernicious Anaemia Society which NHS Choices links to as a source of information.

    Vit D (25 OH) 20 (Deficient <25) L

    She's given me Hux D3 20000 unit capsules to be taken twice weekly for 7 weeks

    I don't think this is enough. This gives you 40,000iu D3 per week, or 5,714iu per day. When I had mine tested, my level was 15. I started with a loading dose of 40,000iu per day for two weeks then went down to 5,000iu daily. Not everyone can cope with that much of a loading dose but it's quite common to hear of a loading dose of 10,000iu per day. However, I don't think your GP is likely to agree so to keep things sweet you may just want to go along with it. It will, however, take longer to raise your level. You're looking to reach 100-150nmol/L which is recommended by the Vit D Council. They recommend 40-60ng/ml which is the same as 100-150nmol/L, just different units of measurement.

    vitamindcouncil.org/i-teste...

    When taking D3 there are important co-factors which your GP wont know about (because they're not taught nutrition). These are K2-MK7 and Magnesium.

    Vit D aids absorption of calcium from food, K2 directs this calcium to bones and teeth (where it is needed) rather than arteries and soft tissues (where it can possibly cause problems such as calcification of the arterties and kidney stones).

    vitamindcouncil.org/about-v...

    You need to buy some K2-MK7, look for 90-100mcg dose.

    D3 and K2 are both fat soluble so should be taken with the fattiest meal of the day.

    Magnesium comes in different forms, check here to see which might suit you best and as it's calming it's best taken in the evening:

    naturalnews.com/046401_magn...

    Don't start all supplements at once. Just start with one (I'd choose Vit D), wait a week or two then add the next one, and so on. That way if you have an adverse reaction you will know what caused it.

    Did she mention these as they are both high?

    Ferritin 188.9 (20-150) H

    CRP 11.30 (<5) H

    Well done on what you've achieved so far :)

  • Thank you Susie :)

    She didn't say when the check for PA would be. She just said we could check it at next blood test which will be at least 1 month away and definitely after starting B12. Does sound like around 3 months as that's when my repeat b12 and folic acid prescriptions will run out. Other than D3 which will run out in 7 weeks and then I assume will go onto a maintenance dose so possibly 7 weeks? I'll ask the PA society in a minute, thanks.

    Will a PA diagnosis change treatment? Since I'm already getting the B12 injections and Folic acid? And considering you say they wont change significantly anyway?

    Also as I won't be starting B12 for 2 weeks anyway. Should I do Vit D now (Having just had fattiest meal of the day about an hour ago) Then folic acid next week then B12 after or is that not enough time between?

    And does the K2 and magnesium count as another supplement which I need to wait another week to start taking? Or does it just go hand in hand with the D3?

    She mentioned the CRP being high said there could be an infection/virus which could be causing the rash I've come out in which is why she said to go back sooner if I start to feel worse. Didn't mention the ferritin being high.

    Thanks for your advice, I'm going to go and re-read your advice on my other post to find the k2 and magnesium recommendations as I've all these supplements you suggested in my amazon basket and no idea which ones I now do and don't need :) x

  • I think you need the PA check before starting the B12 injections. The PA forum should put you right on that so please do check there first.

    PA isn't my forte, but I don't think the treatment would be any different, again the PA forum will advise.

    Intrinsic factor - that might be what she's testing, and I don't really know anything about that, other than it is tested when B12 and folate are very low. Again, be guided by the PA forum.

    I would start your Vit D tomorrow. Some people find it disturbs their sleep. If that happens to you (if you take it with your evening meal), then you could take it earlier in the day but make sure you take it with some fat - a full fat yogurt, maybe a cracker with butter and some cheese.

    Next start the K2, then the magnesium. By that time hopefully you'll have sorted out the B12 and Folate business.

    By the way, when you're on the B12 injections, you may need a B Complex to balance the B vits. Not sure if you'll need that at the same time as taking the Folic Acid - again ask on the PA forum. Maybe when you've finished the Folic Acid that will be the time to add a B Complex.

  • Ok thank you. God this is a bloody mind field! :)

    I really appreciate all your help. Do you know if intrinsic factor is the main test I need?

    Considering I've only just registered and she's actually doing something I don't want to push my luck pushing for the pa test before the b12 appointments. Especially as they're already booked.

    Going to see if i can get it done private x

  • Melissa, do please ask about this on the PA Forum. I do know that once you start supplementing with B12 it then skews any future results for B12, but I don't know if it makes any difference to the intrinsic factor test. All I know is testing intrinsic factor helps to determine the cause of a vitamin B12 deficiency and to confirm a diagnosis of pernicious anemia. Pernicious anemia is caused by vitamin B12 deficiency due to a lack of intrinsic factor.

    As you say, yes, definitely, it's a bloody mine field!

    So, see what they say on the PA forum. If they suggest that you need tests done before starting the B12 injections, then you really should talk to your GP. No point in screwing things up now you've got so far :)

  • That is true. Thanks Susie, sorry I have asked just waiting for a response I know I can be impatient but it's all very stressful :) thanks again x

  • no way on earth are your results ok

    healthy people have a TSH of 1.0 or below and free t4 and free t3 well in upper quadrant of their ranges

    you need treatment and yes going gluten free for at leaat 3 months to see if that helps stop antibody flares is a wise move

    as for pregnancy do not even think about it bcos right now if you did get pregnant your likely to miscarry or have a damaged child

    as it is the likelehood of your child inheriting autoimmune illness is very high and should not be entered to lightly at all

  • Thank you.

    I wouldn't get pregnant now but we were planning to start trying at the beginning of next year so I just wanted to know if that made it more important to push for levo meds as I think it will be difficult to get with my tsh result only slightly raised and the rest in range.

    Or if my symptoms are due to the deficiencies and I've just picked up Hashi's brewing in the background by chance and is maybe not effecting me yet or need treating yet x

  • Right - let's go back to basics here. You are getting a lot of responses from people about their own favourite topics, some of which are more helpful after all the basics are sorted and still symptomatic eg private purchase of NDT.

    Yes you have Hashis so that means you need treatment from a GP with initially levothyroxine. Many people do well on that and never need any other hormone variant. Try that first, though to avoid shocking the system starting doses are low and only upped every 6-8 weeks. So plenty of time to get to correct levels so that planned pregnancy should be easier and supportable.

    Nutrients. GPs are unlikely to recognise and treat your deficiencies. Whilst your Vit D, B12 and folate are all far too low, you will probably have to address these yourself and unfortunately that is going to cost! I usually buy from Amazon, the exception being Vit D - I have found the BetterYou 3000iu spray from Holland & Barrett to be very good (look for penny sales/ 2for1 / etc). Depending on your attitude to sun you may not need to supplement during the summer but you definitely do to bring this up to 100ish for now. B12 can be supplemented with Solgar or Jarrow sublingual methylcobalamin 5000mcg one per day initially for a few months (B12 is water soluble so excess is not toxic). B12 is optimum around 1000. With that you need to balance all the other Bs so look for a supplement that includes methylfolate which should bring up your folate level. With these you should take Vit K2 - MK7 which sends extra calcium absorbed from food to bones rather than arteries. Also magnesium (I take magnesium citrate 2x200). All these because no 1 vitamin works in isolation but as part of a greater process so supplementing 1 also requires others.

    Anti-bodies - supplementing selenium 200mcg (l-selenomethionine) should help these. Also, despite conflicting sides above, you really should try gluten-free to see if it does help you.

    Why are all your nutrients low? Hashis typically have low stomach acid, usually a leaky gut and a slow digestion hence leading to malabsorption no matter how good and balanced the diet. I started with the gut and built up the bacteria with probiotics. I used VSL#3 but these are expensive - I have also heard that BioKult is almost as good and much cheaper. You can also look at posts in this forum around stomach acid - pepsin, apple cider vinegar etc but I would start with the probiotics.

    There is an awful lot to take in, but keep asking questions on here, discuss with your father who has obviously been there done that and read some of the pinned posts (top right of this page) and also the main Thyroid UK site for reference info.

    It is possible to have great improvements in a relatively short time. I am 100 times better now than when diagnosed in June 16, but it does mean taking control of and responsibility for your own health and being committed to improving it. Coming here and having the private tests done shows you are already on your way.

    Good luck

    Gillian xx

  • That's great thank you :) I will defo push for thyroxine treatment if she's not willing to give it.

    Sorry what do the probiotics do? I know build up bacteria but what does that do? I would just go with it but they taste horrendous! :)

    Unfortunately I don't think my dad is there yet. I've been the one passing on info from here to him. Especially to get his b12 checked as he does have some neurological symptoms.

    Do you know if any of this links to migraines with aura, he really struggles with them ?

    Thanks again x

  • Probiotics - It is now thought (not sure if would be classed as proven in medical terms yet) that an underlying genetic predisposition to Hashis can be triggered when food particles (not the broken down version there should be) pass through the gut wall and hit the blood stream and hence attract attention from the immune system. Your defence against this happening in the gut is made up of 2 elements, the gut walls and the good bacteria (or microbiome) that lines it. A lot of the literature around Hashis focuses on repairing this The bacteria can be depleted by many things - anti-biotics, bad diet, chemotherapy, etc, and rebuilding these will also go a long way to addressing the malabsorption of nutrients. I had immediate improvements in how I felt with these. Bio-kult are capsules so there shouldn't be a taste issue - don't even think of using supermarket liquid types, they will do very, very little for you.

    Personally I have had migraines for many years, with a progression through from pain with no aura to pain with aura and last to aura with no pain. No-one ever suggested any possible B12 issues to me but, since starting treatment, I have had not eve the slightest trace of a migraine. Might be pure co-incidence or maybe not. I can't give you any medical evidence, but deficiency in B12 affects so may things that I wouldn't swear it doesn't t least partially cause migraines. Keep pushing to get him to check B12, neurological damage can become permanent if not treated.

    Good luck to both of you.

    Gillian xx

  • Oh and intolerance to certain foods - of which gluten is a prime offender - also causes damage. Hence the general advice about at least trying gluten free

  • Thank you I will get on his case :)

    And thanks for explaining I didn't know there were tablet form available. Another one to go in my Amazon basket this is getting expensive lol! X

  • Melissaemily,

    You should advise your GP you are planning pregnancy. The TSH of women planning conception should be in the low normal range 0.4-2.5. Levothyroxine dose is usually increased by 25-50mcg when pregnancy is confirmed to ensure good foetal development.

    cks.nice.org.uk/hypothyroid...

    It is sufficient to fast 8 hours prior a blood test but remember to drink plenty of water. You should also arrange thyroid blood tests early in the morning when TSH is highest.

    Thyroid antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

    chriskresser.com/the-gluten...

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

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

    Vitamin D 20 is deficient. My GP prescribed 40,000iu D3 x 14 days followed by 2,000iu daily x 8 weeks which raised my vitD from <10 to 107.

    Folate is low. Women planning pregnancy are advised to supplement folic acid to raise folate to prevent neural tube defects (spina bifida) in the baby.

    B12 238 is low. You need B12 >500 and preferably higher especially when contemplating pregnancy. You can supplement 1,000mcg methylcobalamin and a B Complex vitamin to raise B12.

    High ferritin and high CRP indicate inflammation somewhere in the body. This may be due to autoimmune thyroid disease (Hashimoto's) but your GP should monitor this.

  • Thanks clutter. I will tell her on Tuesday. Is this a reason to make sure she prescribes thyroxine despite only slightly raised TSH?

    I did take my second test first thing in the morning but TSH was lower than the test done at 1pm. Both fasted just with water. Do you think this could have just been an odd result? Or something to do with me feeling a little bit better at the time (though no better than the first test)

    Or could it be that TSH higher in the afternoon is just normal for me? Therefore should repeat with afternoon tests?

    Thanks for your reply :)

  • Will you stop saying your tag is only slightly raised as it's not. It's fairly high and needs addressing :-) I would send in your private test results prior to seeing your new doctor with a covering letter of your symptoms and the fact you would like to start a family in the future, for her to read if she has time so she has s heads up of why you are going, then let her talk first. If you feel it's not going the way you like that's when you ask about treatment, good luck

  • Sorry! :) but in gp's terms it's only slightly. Especially as it reduced on the most r cent one.

    That's a really good idea I was thinking I don't want to go in all guns blazing for her to get defensive. Unfortunately I already handed my blood results in when I went to register so they could be uploaded for her to see. I'll be getting an appointment on Tuesday so won't have chance to get a cover letter in now. Hopefully she'll take everything on board.

    If not I know what to do next time I have to change gp x

    Thank you x

  • Melissaemily,

    I would tell your GP you are planning conception and need to optimise your thyroid levels and TSH to avoid problems with conception and miscarriage. It will take some time to optimise levels so you shouldn't wait until you are ready to conceive. Refer your GP to the Nice CKS link or print it out for her.

    TSH is highest early in the morning which is why it is recommended to have early morning and fasting tests. Have a look at the graph in this link healthunlocked.com/thyroidu...

    TSH does fluctuate so yours had dropped slightly on your second test.

  • Thanks I was looking for that a while ago but couldn't find it :) seems like I'm the opposite though! I'll do it earlier next time. I was worried about my sample sitting in the tube too long doing it at midnight.

    Thanks again x

  • Hi

    Just seen your post and thought I'd comment as your symptoms are just like mine were and I've recently been diagnosed with Hashi just 3-4 months ago. For 3 years since having my little boy I was always tired , had aches and pains , dry skin the list goes on! I just put this down to being a working mum . It wasn't until september just gone that a different symptom started which was swollen eyes that I went to the Dr and said I thought I had a eye infection . Long story short my GPs suspicions were right and it was my thyroid , my levels where all over the place and I was put on Thyroxine.

    I just wanted to let you know that since taking Levo I feel like a new person . I had the same throat feeling as you and that has now gone . Dry skin patches have literally disappeared over night and my aches and pains are gone. I look back now and don't know how I was getting through the day. I'm currently taking 100 micro grams of levo and due another blood test soon to see if I need to go up more. I've been really lucky , my GP has been amazing , her sister has Hashis so knew the signs. To put my mind as rest she also refered me for a Thyroid scan because I'd convinced myself the "thing" I felt in my throat was something sinister. It is fine thank goodness .

    Good luck with everything, Hopefully, like me in a few months you'll feel like a new person!

  • That's really promising thank you :) glad you're feeling better now. Hopefully I can get a gp as good as yours sounds! I've had a nightmare so far so you're very lucky :)

    Thanks for replying. I thought the throat thing was all in my head. When it started about 18 months ago I googled it and it all said it was due to a reaction to toothpaste brand. I've kept swapping since but haven't found any to make a difference so I think it's my thyroid I'm feeling x

  • yes I've been really lucky with my GP, there are some good ones out there😀The throat thing was my main concern at the time and I started to snore really bad and like you when I was led flat it felt like something was there ! Just one other thing I was going to mention as you've also spoken about your other results for vitimins etc being low. I to had some results back on vitimins being low and also kidney function not being as it should be and just with taking the Levo these got better on their own. So I'd definatly recommend starting with the Levo first. Good luck!

  • Thank you. Unfortunately she felt my neck and said it seems ok. She wants to try sorting vitamins too before starting thyroxine said she didn't want to do everything at once :-/ at least she's willing I suppose x

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