Come from pernicious anaemia site

[Opal19]

Hi all, I am new to this site. I have hypothyroidism which was found in 2013 and a host of other unexplained symptoms. I take no other medication apart from 50mcg levothyroxine. The 50mcg Levothyroxine was doubled from 25mcg in November 2017 after a spell of thyrotoxicosis on 150mcg Levothyroxine only and a previous episode of thyrotoxicosis on 200mcg Levothyroxine and 20mcg T3 in June 2017.

I have low B12. I am on a vegan diet because of my reactions to dairy products. I also take 5mg folic acid as well which is once a week and this has just been started. I am on 3-monthly injections of B12 (hydroxocobalamin) but within a couple of weeks my symptoms return. Any advice appreciated

FOLATE 2.33 (2.50 - 19.50 NG/L)

VITAMIN B12 228 (190 - 900 PG/L)

TSH 4.59 (0.2 - 4.2 MIU/L)

FREE T4 14.8 (12.0 - 22.0 PMOL/L)

FREE T3 3.5 (3.1 0 -6.80 PMOL/L)

Symptoms from B12d.org site

- Brain fogginess

- Being anti social

- Weepy

- Tired all the time

Unexplained symptoms

- Loss of balance

- Constipation

- Neck swelling that comes and goes

- Feeling cold

- Anxiety

- Brittle hair and nails

- Cold hands and feet

- Weight gain

- Bags and dark circles under eyes

- Hyperpigmentation

- Pins and needles in feet and legs

- Looking pale

- Sore tongue

- Cracks at corners of mouth

- Dizziness and whooshing through head worse just before or during periods

- Headaches

- Acne

- Aches and pains

- Light sensitivity

- Dry eyes, mouth, nose and throat

- Difficult swallowing

- Weight loss (?) have always been about a UK 6 - 8 dress size. Weight goes between 7.3 stone - 8.7 stone

Thanks for any advice.

[Opal19]

Also vitamin D 20.2....I am on loading doses for this

(<25 NMOL/L SEVERE VITAMIN D DEFICIENCY. PATIENT MAY NEED PHARMACOLOGICAL PREPARATIONS

25 - 50 NMOL/L VITAMIN D DEFICIENCY. SUPPLEMENTATION IS INDICATED

50 - 75 NMOL/L VITAMIN D MAY BE SUBOPTIMAL AND LONG-TERM MAY LEAD TO CLINICAL EFFECTS. ADVISE ON SAFE SUN EXPOSURE AND DIET. SUPPLEMENTATION MAY BE INDICATED

>75 NMOL/L ADEQUATE VITAMIN D)

[Marz in reply to Opal19]

If you are taking loading doses of VitD - it is suggested on this Forum that you also take important co-factors - Magnesium and VitK2-MK7. K2 ensures calcium is directed away from the arteries and soft tissues and directed to the bones and teeth. VitD improves the uptake of calcium from foods. Your VitD needs to be around 100 ++.

I have read research that says taking a big dose everyday is more effective than a loading dose once a week. How much is your loading dose and for how long. I would suggest you are tested again at the end of the loading and then go to a maintenance dose of around 2000 IU's.

You also need a dose increase of T4 - I believe you are on 50mcg - how long have you been on this starter dose ? Why Folate once a week ? Are you taking a good B complex to keep all the B's in balance ?

How are your Ferritin levels ? - needs to be around 70 to enable a good conversion of T4 into T3. Your TSH on treatment should be around 1 or less. FT4 and FT3 towards the top of the range.

[Opal19 in reply to Marz]

Thank you, the 50mcg Levothyroxine was doubled from 25mcg in November 2017 after a spell of thyrotoxicosis on 150mcg Levothyroxine only and a previous episode of thyrotoxicosis on 200mcg Levothyroxine and 20mcg T3 in June 2017.

i didn't know anything about taking a B complex. Are there any out there easy for me to swallow because I have difficulty swallowing?

Folate is once a week but I want to increase this to once a day. It was once a day but I developed neurological symptoms on it and the folate went over range >20 (2.50 - 19.50) so it was then reduced to just once a week. Now the neurological symptoms seem to improve on the B12 injections.

My ferritin in December 2017 was 64 UG/L (30 - 400) Haematology want this over 50 and iron tablets upset my stomach which is why I haven't supplemented. I think this is now lower than 64 because my periods are heavy and painful. GP retested my thyroid, ferritin, folate B12, vitamin D a week ago and I am going to speak to her about my results next week.

I have no idea if anything abnormal has been flagged up in my results or if I am being made to wait until next week to find out.

[Opal19 in reply to Marz]

My loading dose of D is 300,00IU once-weekly doses and my GP plans to maintain my level with 800IU. I I have been on the loading dose for 2 weeks.

[Marz in reply to Opal19]

They always prescribe 800 IU's - but it will not be enough to keep your levels up. How long will you be on loading doses ? - and will they be re-testing at the end ?

[Opal19 in reply to Marz]

Thank you, I will be on loading doses for another 5 weeks and they will be retesting after that

[Marz in reply to Opal19]

Did you read about the important co-factors I mentioned above ?

[Opal19 in reply to Marz]

Thank you, yes I need to take magnesium and K2 MK7

[silverfox7]

Hi! I take it you are being treated for your hypothyroidism? Both your FT3 and FT4 are low in their rangesso I would ask for a 25 mcg increase. Also Vit D, B12, folate and ferritin need to be optimal to get your thyroid to work better butvit doesn't happen overnight.

Have a look at SeasideSusie's post to see what optimal levels should be and how to address them. I would take folate every day to kick start that as well.

Also ha e a look at the Thyroid Uk site who run this forum as loads of helpful advice on there

[Opal19 in reply to silverfox7]

Thank you, yes I am being treated for my hypothyroidism. I take 50mcg Levothyroxine. This has been since April 2018. It was doubled from 25mcg in November 2017 after a spell of thyrotoxicosis.

[Auntyp62]

I agree with others that you may be yo yoing from hyper to hypo and need a little more thyroxine, for many years I was treated the same and like you was on b12 injections and like you they lasted a couple of weeks. I now take oral b12 and b supplement for folic acid and other bs which keeps my levels even and feel better than I had in years.....I also ensure my vit d is a good level.....unfortunately Doctors look at b12 levels and automatically prescribe injections on a presumption of mal absorbtion, but as you learn more about thyroid problems you find out that low b levels go hand in hand with hypothyroidism.

[silverfox7]

Have you been retested since November? Looking at your results I'm suspecting not. After each dose change you should be retested after 6 -8 weeks. It takes 6 weeks to get a new dose fully into your body sovthen you need to be retested to see if you are on enough medication. If not then you should be increased by 25 mcg and the processrepeated until you are on the correct dose for you. Both FT4 and FT3 should be in the upper third of each of their ranges.

[Opal19 in reply to silverfox7]

Thank you, I increased myself from 25mcg Levothyroxine in November to 50mcg in April. Level was retested in April and then I increased regardless of levels. I knew I needed to be on more.

[greygoose]

Just out of curiosity, how do you define 'thyrotoxicosis'?

[Opal19 in reply to greygoose]

The endo said my TSH was below range and free hormones above range

[greygoose in reply to Opal19]

So, have your antibodies been tested? Because I'm wondering how come, if you were over-medicated on 150 mcg, your dose was then put up to 200 mcg and T3 added. It sounds as if you are swinging between hypo and hyper, which would mean that you have Hashimoto's Thyroiditis, aka Autoimmune Thyroiditis in the UK, and the test for that is TPO antibodies. It would have been great it they'd tested them at the point where your Free levels went up to over-range, because that's when they would have been highest. But doctors just know nothing about it, and prefer to chop and change the patient's dose, leading to even more stress in the body. And, it is important to know if you have high antibodies, so if you haven't already had them tested, it would be a very good idea to ask for the test.

[Opal19 in reply to greygoose]

Thyroid peroxidase antibodies 1700 (<34)

Thyroglobulin antibodies 304.3 (<115)

[greygoose in reply to Opal19]

OK, so you do have Hashi's. And that's why you had episodes of thyrotoxicosis. Not because of the dose you were on.

When that happens, it's not a good idea to change the prescription, because the high levels are going to go down by themselves in time. And you are going to be hypo again. If you needed 200 mcg levo plus T3 before, you're going to need it again. So, it's best to just stop taking your hormone until you feel you're going hypo again, then get tested, if you can, and then resume your normal dose.

Doctors just can't seem to get their heads round that...

So, as you have Hashi's, are you gluten-free? Do you take selenium? It's best if you can keep your TSH suppressed, with Hashi's - taking T3 should do that, anyway - because that evens out the ups and downs of the flares.

[Opal19 in reply to greygoose]

Thank you, no I don't take selenium or gone gluten free. I didn't know about those

[greygoose in reply to Opal19]

No, well it's certain that your doctor won't tell you! Doctors don't even know that antibodies are a problem.

Hashi's people are often sensitive to gluten, and going 100% gluten-free can make you feel much better, and reduce your antibodies.

Selenium can reduce antibodies, and improve conversion. So, both worth a try.

[silverfox7]

So it's your April results you are waiting for? If that's the case it might be better to repost when you get those and know your doctors comments on them. I wouldn't suggest adding any more medication until we know what the reading are as you have already increased it on how you are feeling. That may well be enough but I don't think you should risk going over-not a good feeling anyway, until you have your actual results. Even with those you still need to be tested on the actual increase you have done yourself. I personally wouldn't want to try and speed things up as it can be so easy to overmedicate and get into a mess though I understand your frustration.

[Opal19 in reply to silverfox7]

Thank you. I am waiting on April results. I don't think they are normal because of how I feel and that I was on 50mcg Levothyroxine before and my TSH was over range

[silverfox7]

Just keep up the testing and hopefully you will get there.

[JOLLYDOLLY]

Hi Opal19,

I am concerned for you regarding the different doses you have been on with the thyroid medication. Most of the symptoms you refer too are if you are not getting enough thyroid medication. it can mess up everything and completely put you out of kilter.

Four years ago when I was poorly, I was really anaemic, sore swollen tongue and dry eyes etc. Could not get on with the iron supplement, so they changed it.

Unfortunately I have the lot I have been on medication all my life, currently on 200 mcg of thyroxine and 20 mcg of Lithyronine.

I have B12 jabs every three months, vitamin D supplements every day and one iron supplement everyday plus a diuretic.

At my last test, I was not anaemic but I am menopausal. However, when I was poorly, I was having really bad periods, so much so, that on two occasions, came close to blood transfusions.

I don't get the hot flushes, but I am constantly cold and pale, which is weird with me having freckles lol. Pigmentation discolouring on my neck and shoulders/arms

I did take folic acid with my iron for a while, but not now.

Your thyroid ranges are similar to mine, but you seem low on T4 and your TSH level would indicate that you are also under medicated. I am due to be retested as my TSH level was 4.87 last time, which means I might be slightly under medicated.

Your Folate and B12 levels are very low too.

I would seek a second opinion if I was you but would not self medicate until you have seen someone. As already mentioned it does take 6-8 weeks to get into your system.

Do not take any of the medication together otherwise it does not absorb properly and not take any at all before a blood test, only after.

Let us know how you get on. Take care x