Thyroid UK
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Advice please

Hi all,

I'm writing this message because I'm literally at my wits end and I'm hoping someone can help me I was diagnosed with hashimotos ten years ago at the age of 21 after being borderline for a couple of years. Since then I have never felt "normal" despite being repeatedly told I'm being adequately replaced. I have seen a few consultants and they have always just told me to accept that I will never feel normal again and will always find it difficult to lose weight etc. In the past I have been over replaced but it didn't help much and the doctors won't do that anymore. Currently my TSH is well suppressed which I understand is what it should be. However I'm just so exhausted all of them time - I feel like existing rather than living and just about manage to work and little else. On top of this I have a terrible immune system (get every bug going), suffer awful mind fog, headaches, irregular periods and have bad IBS symptoms. I've recently cut dairy, Yeast, soy and eggs out of my diet after food intolerance tests but this hasn't helped. Sleep is not restorative for me and I could literally sleep all day. I also have low normal b12 but not low enough to treat at present. Currently I take 125mcg of thyroxine a day. Does anyone have any advice for me? I wonder if I might be someone who would benefit from taking t3 as well but I've always been told thyroxine is the only option. Does anyone else take t3? How do I find out if I would benefit? Lastly I'm thinking about paying to see an endocrinologist privately - can anyone recommend a good sympathetic one? I feel like I'm too young to feel this rubbish anymore!!

Thanks

23 Replies
oldestnewest

Cathy - have you got your latest results that you can post (with reference ranges? If not ask your surgery for a print out, you are legally entitled to your results under the Data Protection Act in the UK.

As you have Hashi's, are you strictly gluten free and do you supplement with selenium L-selenomethionine 200mcg daily?

What's your B12 result? If it's not low enough for your GP to treat, there's nothing stopping you buying your own supplements.

Besides B12, have you had any other vitamins and minerals tested -

Vit D

Folate

Ferritin

Plenty of us take T3 in addition to our Levo, some members take T3 only. The only way you can know if you will benefit from it is to have FT4 and FT3 tested at the same time.

For the list of thyroid friendly endos email louise.roberts@thyroiduk.org.uk then any you can get to ask for feedback from members who will have to reply by private message.

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Thanks so much for your email Susie. I don't have a copy of my latest results but I will get one tomorrow.

I'm not gluten free as I've never been advised on this by anyone so far. Food intolerance tests didn't highlight this as an intolerance but I'm willing to add it to my list of things to avoid if you think it will help? What's the science behind this? At the moment I don't take any supplements (I was taking vit b complex but stopped so I could be checked for pernicious anaemia). Should I start taking selenium then? My b12 is currently 288 but has been as low as 149 previously - I think it's increased from the vitamins I was taking. I'm thinking about trying sublingual supplements for this now. My folate and ferritin are both with normal range although previously my folate has been low end of normal. I will need to check about vitamin d as I'm not sure if I've had this checked lately.

What ft4 and ft3 results look like if t3 would be of benefit? I know I've had these done in the past but I'm not sure about recently.

Thanks for the email address I will email Louise for the list.

Thanks again

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Cathy, when FT4 and FT3 are tested at the same time, we can see how well you are converting T4 to T3. Generally poor conversion would show a low FT3 and a high FT4. But that doesn't necessarily mean that T3 is the answer. All the building blocks need to be in place for thyroid hormone to work and conversion to take place and that is all nutrients need to be at optimal levels which is why we always suggest testing. Optimal levels are

Vit D - 100-150nmol/L (or if unit of measurement is Ng/ml then 40-60) according to the Vit D Council.

B12 - very top of range, even 900-1000 for us Hypos.

Folate - at least half way through it's range

Ferritin - minimum of 70 for thyroid hormone to work, generally said for females 100-130.

Selenium can help reduce antibodies so is always recommended for Hashi's patients, it also helps T4 to T3 conversion so it's a good supplement to take.

Gluten contains gliadin which is a protein thought to trigger antibody attacks, and excluding it has helped many members here.

Some information about Hashi's

chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

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Seaside Susie

You really know your stuff ☺️ I need to do two things at the moment and I was wondering if I could ask you. I need to raise my ferritin levels but not my iron (as that's high but ferritin low?!?) how on earth do I do this. And I need to get my T4 converting properly again - but from reading your last message, I think I am doing everything I can in terms of diet and supplements, although I can't figure out if iodine is safe or not - so much contrasting advice online re iodine and thyroid. Thank goodness for this forum 😄

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Magenta, as far as I am concerned, you shouldn't consider supplementing with iodine unless tested and found to be deficient, and then supplementing should be under the guidance of an experienced practioner.

I'm not an expert on iron so you might want to start a new thread for that to attract the attention of those who know much more than me. I raised my low ferritin level purely by eating liver once a week (and still eat it regularly to maintain level) and when I did an iron status test everything was comfortably in range, nothing was elevated. But please don't take that as advice, that is just a personal anecdote.

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Thank you so much 😄

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Hello 'Hidden', for low ferritin we need one of the ferrous-es, eg ferrous fumarate etc. I have it prescribed from surgery but you can buy it over the counter.

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Probably no point responding in any way to someone who appears "Hidden". That means they have left.

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Thanks Helvella, I thought it just meant their name was a secret!

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Hi susie,

Here are my last blood results:

TSH 0.04 (0.35-5)

Free t4 17.6 (7-20)

I haven't had free t3 checked in the last 3 years (not sure about before that)

Vit d not checked

B12 284 (130-800)

Folate 16.3 (4-20)

Ferritin 52 (12-250)

What do you think? Any suggestions?

Reply

Cathyjw

TSH 0.04 (0.35-5)

Free t4 17.6 (7-20)

These look good, as you know. You would need to have FT3 tested at the same time as FT4 to know if you would benefit from T3. You are unlikely to get this done on the NHS but can do it with a fingerprick test from Medichecks or Blue Horizon. As you have your vitamin and mineral levels already, and you know that you have Hashimoto's, then one of their cheaper tests would be enough

bluehorizonmedicals.co.uk/t... (I've just done that, result back the same day as lab received the sample)

medichecks.com/thyroid-func...

**

You must get Vit D checked, it's very important as low level can cause many problems, and it's frequently low when other nutrients are - fingerprick blood spot test here vitamindtest.org.uk/index.html

**

Folate 16.3 (4-20) - this is good

B12 284 (130-800) - this is way too low. Anything below 500 can cause neurological problems. I mentioned above that it needs to be at the very top of range, or even 900-1000.

Check for any signs of Vit B12 deficiency here b12deficiency.info/signs-an... If you have any you could post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc If not then you could buy some sublingual methylcobalamin lozenges 5000mcg and take one daily to boost your level. When the bottle is finished, buy the 1000mcg dose and take one daily as a maintenance dose.

When supplementing with B12 we need a good B Complex to balance all the B Vitamins.

**

Ferritin 52 (12-250) - ideal levels mentioned above. You can help raise ferritin by eating liver regularly, maximum 200g per week, and including lots of iron rich foods apjcn.nhri.org.tw/server/in... I raised my ferritin from 35 to 91 by eating liver once a week, and still eat it every 7-10 days now as maintenance.

You could buy iron supplements but it's such a fuss trying to fit them around thyroid meds and other supplements that I don't personally think it's worth it with your current level.

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Hi seaside susie,

Thank you so much for all your advice. I'm seeing the doctor next week so will ask about the vitamin d and free t3 tests and if I have no luck pay for them myself. I am concerned about vitamin d as I work in the dark all day full time.

I am currently being investigated for pernicious anaemia but I think the fact I was self supplementing has messed things up a bit. So far nothing has shown up but I'm still waiting on an intrinsic factor antibodies test. If this doesn't come back with anything I think it will be a struggle to get the doctors to treat me despite the fact that last year my b12 was 149. I've had neuorological symptoms for a few years now :( all else fails I will try the sublinguals or possible self injecting. I didn't know the vit b complex was needed as well so thank you for telling me that.

Not sure I can stomach the liver but will try! Why do you have to be careful about iron supplements?

Also is there a test I can ask for for gluten sensitivity do you know?

Thanks

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I am concerned about vitamin d as I work in the dark all day full time.

It would be a good idea to mention this to your GP. Emphasise that your job means that you work in the dark all day, full time, so there is very little opportunity for you to be out in the sun and you are worried that your Vit D levels could be low.

**

You can get further advice from the Pernicious Anaemia Society forum about your B12 healthunlocked.com/pasoc

**

If eating a meal of liver doesn't appeal then you can mince it/chop it small and add to casseroles, curry, cottage pie, bolognese, ec.

Iron supplements are such a faff because they have to be taken four hours away from thyroid meds and at least two hours away from any other supplements or medication as it affects their absorption. If you need to take iron more than once a day then it's difficult to fit everything in. It can also cause constipation and upset tummy in some people.

**

Why do you need to test for gluten sensitivity? You have Hashi's, you don't have to be coeliac or gluten sensitive for a gluten free diet to help reduce the antibodies. There are many Hashi's members here who will attest to how much difference being gluten free has made, even non-Hashi's people too.

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Thank you for your help :)

I guess I'm just concerned as I already can't eat dairy, eggs, yeast and soy and worry that excluding gluten will make my diet really limited so wanted definite proof I need too that was all.

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Hi again Cathy, I know just what you mean, I too eat no dairy, eggs, or soy, also no meat nor fish, no sugar and for a long time no gluten either. My dentist say I must not have citrus fruits nor vinegars either - boring or what!!!

Some people though are certain they are better for no gluten. I can't tell any difference but avoid it anyway just in case.

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Does pate count for liver?! I could stomach that!

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It will go some way towards helping, as will all the other iron rich foods. But it doesn't contain as much iron as liver. Liver is a superfood and has more benefits than just iron chriskresser.com/natures-mo...

A lot of people say YUCK when liver is mentioned even when they've never tried it. How it's cooked can make a great deal of difference. I was a demi-veggie for donkeys years, had a very low ferritin problem, couldn't tolerate iron supplements so had to do something. I asked the butcher to find me the nicest piece of liver for an almost veggie person because I really need it to help raise my ferritin (he probably thought I was mad, I never use the butcher normally!). He sorted me out a really nice piece and I experimented and found the best way to cook it for my taste. It doesn't need a lot of cooking, around five minutes or so over a gentle heat, it should be tender, not like some people who overcook it and it ends up like shoe leather!

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Lovely with juniper berries 😊

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Hi Seaside Susie,

Just wanted to update you - I hope it's not just psychological but I have felt much better these last few days since starting the selenium and cutting out gluten. I've also started taking magnesium every night before bed. Long may it last!! X

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Sounding positive Cathy :)

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Hi Seaside Susie and I lie your reply to Cathy. Ca you tell me please, is it oly gliadin that triggers antibody attacks? I avoid all forms of gluten, eg that in oats, barley, malt etc etc and would be delighted if I could eat such foods again (simple things like vinegar!).

Please don't be offended but do you think we should alert Cathy to the fact that different labs use different ranges so your figures might not be quite right for her lab results?

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thyr01d

Please don't be offended but do you think we should alert Cathy to the fact that different labs use different ranges so your figures might not be quite right for her lab results?

Which figures are you meaning?

I'm not Hashi's so you might want to post your question in a new thread so that those experienced with a gluten free diet can comment. My comment about gliadin possibly triggering antibody attacks is one of the things I picked up on my research but not sure which article.

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Hello again SeasideSusie, I am talking total rubbish! Very sorry.

Thanks for the reply about gliadin too, I did try posting the question but it didn't produce any definite answer.

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