What to say to the doctor!: Hi all. Could I have... - Thyroid UK

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What to say to the doctor!

Naz67 profile image
11 Replies

Hi all. Could I have some advice please. I'm seeing the doctor for the third time tomorrow. I'm suffering from the usual hypo symptoms and have been off sick for the last 3 weeks. Not getting any better, doctors have not given me anything to help!

What can I say to the doctor so she can give me iron supplements, suspected Hashimotos, stomach acid or gut flora test?... I'm so fed up... Getting no where!

Bloods 2 weeks ago:

TSH 3.54. (0.3 - 5.5)

FT3 3.7 (3.1 - 6.8)

FT4. 25.3. (12 - 22)

TPO. >600. <34

(I'm confused, this is all I wrote down for TPO)

B12 1,107 (197 - 771) High!

Calcium 2.39 (2.2 - 2.6)

Vitamin D 92 (50 - 144)

Ferritin. 25 (15 - 150)

(Dr said: Lower end of normal range...)

Folate. 12.5 (3.8 - 16)

HBA1C 5.4 (4.0 - 5.9)

(Glucose test, no diabetes)

Cortisol. 429 (166 - 507)

(Dr said it is higher than average but normal)

The doctor said my thyroid is now over active as my T4 is high. To reduce Levo to 75mg and repeat blood tests in a couple of weeks. He said my pulse was 94, quicker than average. I have not reduced my Levo due to what people have recommended on this forum.

Pulse 94 (60 - 80) for my weight/height etc. 5'2", 47kg underweight.

Blood pressure 106/65

I have been taking Selenium 400ug daily since 27.07.16, so over a week. I'm also taking Juice Plus+ vitamins A, C, E and Folic Acid since 22.07.16, nearly 2 weeks. The last blood test was on 20.07.16.

Prior to this I have been taking a 'Wellwoman' vitamin and mineral supplement for months. (I've stopped them since I started the Juice Plus and Selenium).

Am I not absorbing all these nutrients?... Does low stomach acid affect absorption of vitamins and minerals? I ask this because prior to the blood tests I've been drinking green smoothies twice a day... They included spinach, kale, avocado, Apple etc ... So why is my Ferritin level low?...

Can u help please?...

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Naz67
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humanbean profile image
humanbean

TPO. >600. <34

The "normal" range for TPO antibodies is for it to be lower than 34. Your level is greater than 600, so is way over the normal range and you have confirmed Hashimoto's Thyroiditis, usually known by thyroid patients as "Hashi's".

greygoose profile image
greygoose

Yes, low stomach acid does affect absorption of vitamins and minerals. But it's not just that, you aren't getting enough to absorb. Humans cannot absorb iron from spinach, because it also contains a substance which blocks absorption. And well-woman, and all those bunches of vits and mins stuffed into one pill, just don't contain enough of anything to deal with a deficiency. You would be much better off taking specific iron tablets. With at least 1000 mcg vit C to help absorption.

Your doctor doesn't know much about thyroid, does he. Your FT4 might be over-range, but your TSH is too high - should be one or under - and it's high because your FT3 is so low. You just aren't converting much, are you. And lowering your T4 is just going to make your T3 lower.

Now he's lowered your T4, he should be adding in some T3, but I doubt it if he will. Might be an idea to buy your own. It's low T3 that causes symptoms.

Naz67 profile image
Naz67 in reply to greygoose

Thank you Greygoose for your reply.

Oh dear, I see what you mean...

What a waste of time!

Can I ask

What specific iron tablets should I take? What's their name/strength please? I have no idea but do realise I am low. Do they come with 1000mcg vitamin c? I ask because I'm taking some vitamin C already. Can I take iron tablets the same time as other vitamins such as A, E and folic acid?

Thank you for your help Greygoode.

greygoose profile image
greygoose in reply to Naz67

Well, when I said 'specific', I didn't mean a specific brand or strength, I meant specifically iron, rather than multivits. Perhaps I phrased that rather badly. I can't help you with brands, because I don't live in the UK. I don't even know if they do one with vit C incorporated, but I think you will probably have to take two different tablets. There's only so much you can get into one pill.

Personally, I would take iron away from everything - but look on the PIL in the box and see what the manufacturers say. It should certainly be taken 4 hours away from levo.

How much vit C do you get in that multi pill? I bet it's not nearly enough. I take 4/5000 mg a day. And there probably isn't enough vit A or E, either. And as for folic acid... It doesn't agree with everyone, let's say. Methylfolate is much better. Oh, and is the vit A beta carotin? If so, you probably aren't getting much benefit from it. Another problem with these multis is that they use the cheapest ingredients. Personally, I wouldn't touch them with a barge pole.

bluebug profile image
bluebug

There is actually nothing you can say to get a doctor to prescribe vitamin or mineral supplements if they don't think you need them.

Iron tablets - in the case of ferrous fumerate or ferrous sulphate - are cheaper than most other vitamins and minerals at around £3.75 for pack of 84 tablets. As ferritin rises slowly you won't need a test 4-6 months.

In regards to multi-vitamins/multi-minerals apart from B complex vitamins they are a waste of money. Take separate vitamins and mineral tablets as needed. The reason for this is that they tend to have ingredients that interact with each other so you can't absorb them, in addition they have restricted amounts of vitamins that people in developed countries are deficient in so don't contain enough of any vitamin to combat deficiency.

Your vitamin D, folate and vitamin B12 levels are fine, and are either optimal or nearly optimal - so you have no absorption issues there.

More information on ferritin - patient.info/doctor/non-ana...

SeasideSusie profile image
SeasideSusieRemembering

It's very difficult isn't it Naz67 . From a lot of the posts on here we see that there are many doctors, and endos, who really don't seem to know very much at all about hypothyroidism, the knowledge of members here seems to be far superior!

You certainly have not got "suspected Hashimoto's" - with antibodies that high you definite do have Hashimoto's as Humanbean has said. Don't expect any help from your doctors regarding that, very few seem to know much about it and often dismiss it. I don't know if you've been given any links before but here are a few:

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

Learn all you can, we have to educate to help ourselves because doctors don't seem to be helping much, they seem to like to keep us ill.

Going completely gluten free can help reduce antibody attacks. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You are already supplementing with selenium so that should help as well, the maximum is 400mcg a day so don't be tempted to increase your dose.

I don't know if you've posted your vitamin and mineral results before and had any suggestions there, but I'd say

Vit D is just coming up to the recommended level of 100+. If you are supplementing then continue. If you're not supplementing you might want to take 1000iu D3 daily as a maintenance dose. Also take K2-MK7. Vit D aids the absorption of calcium and K2 directs it to bones and teeth rather than arteries and soft tissues. It's also recommended to supplement with magnesiumwhen taking Vit D, most of us need it anyway.

B12 is marked as high but I wouldn't worry, the Pernicious Anaemia Society recommends 1000. Any excess B12 is pee'd out.

Your folate is over half way through range so doesn't really require supplementing. I don't know much about Juice Plus but I imagine it's not cheap, you would be better just supplementing what you need. If your folate was low you'd be better with a methylfolate the active form) supplement rather than folic acid (has to be converted to the active form) anyway.

I know you're not taking the Wellwoman supplement now, but it wasn't a good choice anyway, too little of most things, the wrong version of B12 (cyanocobalamin for cheapness instead of methylcobalamin), folic acid rather than folate, and 150mcg iodine which we shouldn't supplement unless we're deficient.

Your ferritin is very low at 25 (15 - 150), this needs to be half way through range (82.5) or at least 70 for thyroid hormone to work properly, 100 is even better. You need to supplement with iron if not already doing so. Always take iron with 1000mg Vit C to aid absorption and help avoid constipation, and take the iron 4 hours away from thyroid meds. Ferritin can take a long time to build up. You can eat liver once a week to help as well.

As for low stomach acid, most of us hypos have that. Either organic apple cider vinegar with 'mother', in warm water sweetened with honey to tast, and build up the ACV amount gradually, can help, or Betaine HCl & Pepsin supplement.

As for your thyroid test results

TSH 3.54. (0.3 - 5.5)

FT3 3.7 (3.1 - 6.8)

FT4. 25.3. (12 - 22)

Well, your TSH says you're not on enough thyroid meds. The aim of a treated hypo patient is for the TSH to be 1 or below or wherever necessary for FT4 and FT3 to be in the upper part of their ranges.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist said this in a Pulse Online magazine article:

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

If you email louise.warvill@thyroiduk.org.uk she will let you have a copy of the article which you can print out and show your GP.

The fact that your FT4 is so high and FT3 so low could mean you are not converting and may need the addition of T3 and probably a lowering of your Levo. However, there have been a few threads lately about high reverse T3 and a sign of that can be high FT4 and low FT3 which means that any T3 that is converted is making reverse T3 rather than free T3. I'm not sure how many doctors and endos know much about this. I don't know much but here's an article about reverse T3 stopthethyroidmadness.com/r...

What can you say to your doctor? I don't honestly know. Some are totally blinkered, they don't think outside the box, have little knowledge and don't want to broaden that knowledge. I think you have a few choices:

1) Take the article by Dr Toft that I mentioned above, discuss it and try to get your GP to follow the suggestions there.

2) Ask for a referral to an endo. If your GP is willing, email Louise (email addy above) for the list of thyroid friendly doctors/endos, see if there are any you can get to and then ask on the forum if anyone has any experience of them.

3) Get a Blue Horizon test - Thyroid Plus 12 - to see if you have high reverse T3 and address it if you have.

4) Self treat with the guidance of experienced members on here who are already successfully self treating.

Take seriously the advice about gluten free diet to help reduce the antibody attacks and read, research, learn as much as you can about your illness. You need to educate yourself and maybe even educate your doctor. It's a long, hard road as many of us here have travelled.

Naz67 profile image
Naz67 in reply to SeasideSusie

Thank you seasidesusie, lots of info there.

Just a few questions:

Is there a tablet with vitamin D3 1000iu and K2-MK7 and magnesium? All in one tablet or do u have to take them separately?

If separately, what dose do u need of k2 and magnesium?

Is chicken liver ok to have regarding iron intake?

How much ACV in how much water? What dose do u start with and what do u build it up to?

(1tablespoon in 200ml water ok?)

What strength or dose does one need for Betaine HCl + Pepsin?

Sorry for all the questions! I want to order these supplements on line asap.

I have got an appointment with an endocrinologist on 13 October 2016. That's the earliest appointment they could give me as a routine appointment! I'm not considered urgent at all... Wonder if he knows I am off sick and knackered?!! He's probably seen my results are in range and feels I'm not worth the bother!

I have been gluten free for over a week. I'm not hardcore as in some frozen potatoe products have a coating of wheat or I leave the pastry and eat the filling of a pie. I have also gone diary free. Change of diet was suggested by my osteopath. He said it would help me to get better quickly. I have also given up fizzy drinks, sweets etc and reduced my refined sugar to 2 teaspoons! It's been hard... I'm not brilliant at it but trying very hard!

Thank you for your help.

SeasideSusie profile image
SeasideSusieRemembering in reply to Naz67

Naz67 Thank you seasidesusie, lots of info there - I know, sorry, I talk too much :)

You will find some Vit D/K2 combos, just make sure it's MK7 form of K2 though. I prefer to take mine separately as I like to find supplements with as few unnecessary extras as possible, and I prefer not to take capsules as I find them hard to get down, soft gels and tablets are better for me.

The K2 I am going to start taking next is this one amazon.co.uk/Jarrow-MK-7-90... and it contains 90mcg per capsule. I'm just waiting for Jarrows to confirm that it is in fact olive oil and not soybean oil that they use as I've seen both on the label depending where I look.

I get my Vit D3 from here bodykind.com/browse/brand/2... I like those because they only have the D3 and olive oil, nothing else. You could get the 1000iu and take once a day, the 2000iu and take alternate days, or whatever you wish to suit your budget. The cheapest is the 360 x 5,000iu which is what I get and take three days a week at present.

Magnesium will have to be separate, you might want to check out the different forms of magnesium here naturalnews.com/046401_magn...

Chicken liver actually has more iron than lamb's liver so it's an excellent choice.

ACV - this is the one I use ethicalsuperstore.com/revie... I put some honey in a mug, add about half a mug of warm water to dissolve, then start with one teaspoon of ACV and drink through a straw to protect tooth enamel. Gradually work up to one tablespoonful of ACV and just adjust the honey to taste.

I found that Betaine HCl did nothing for me, whereas the ACV worked. It's an individual thing. Have a look at this article scdlifestyle.com/2012/03/ho... I got up to something like 8 capsules during a meal, what with all the water necessary to take them it just got too ridiculous. Some people find that just one capsule works.

I really don't envy Hashi's patients and having to go gluten free, I think I would find it very hard. However, from what I read it does need to be 100% gluten free, even the smallest bit of gluten can have a bad effect that lasts for weeks.

With your supplements, just start one at a time, give it a week and if no adverse reaction then add the next one, and so on. If you start them all at once and have a reaction then you wont know what it is and will have to stop everything and start from scratch one at a time.

Naz67 profile image
Naz67 in reply to SeasideSusie

Thank you that has helped so much. Due to brain fog I will need some time to absorb the info and start ordering lol! X

SeasideSusie profile image
SeasideSusieRemembering in reply to Naz67

Ha ha, I know the feeling Naz67

If you do think about the Jarrows K2-MK7 I have now had a reply from them. Their current formula has changed to use olive oil, but they say to be aware that some suppliers will still be distributing older stock and those will contain soybean oil.

Naz67 profile image
Naz67 in reply to SeasideSusie

Hank you for that. Yes brain fog is an interesting one... I haven't cooked for 3 weeks and have forgotten things lol!

Will look online and order swap. Thank you so much for your help! x

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