Newbie: Hi I feel like I have dementia. I am... - Thyroid UK

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Rach2228 profile image
28 Replies

Hi I feel like I have dementia. I am becoming less like myself, withdrawn, anxious, unable to think or focus, concentration becoming more clouded. Sluggish bowels. Tiredness, cold intolerance, pins and needles, puffy eyes, weight gain. I take 100mcg levothyroxine. Diagnosed 2011 with hypothyroid. Thankyou

TPO antibody 2000 (<34)

TSH 7.01 (0.2 - 4.2)

Free T4 14.6 (12 - 22)

Free T3 3.2 (3.1 - 6.8)

Vitamin B12 100 (180 - 900)

Folate 2.2 (4.6 - 18.7)

Vitamin D 22.9 (<25 severe)

Ferritin 16 (15 - 150)

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Rach2228 profile image
Rach2228
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28 Replies
shaws profile image
shawsAdministrator

You need an immediate increase in levothyroxine. Your TSH is far too high and the aim is sufficient levothyroxine to bring it down to 1 or lower. Both FT4 and FT3 are too low and should be towards the upper part of the ranges.

Ask GP for an immediate increase of 25mcg and have a blood test every six weeks with an increase of 25mcg to bring TSH down and the Frees towards the upper part of the range.

Give your GP a copy of the following and tick off the symptoms you have.

All should be resolved when you are on a sufficient dose of hormones that make you feel well.

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

Rach2228 profile image
Rach2228 in reply toshaws

Thankyou GP will not increase because he said I will be overmedicated with TPO antibody 2000 (<34)

shaws profile image
shawsAdministrator in reply toRach2228

I am going to add a couple of other members SlowDragon and Hidden who may be able to answer the above better than I can.

Marz profile image
Marz in reply toRach2228

Having TPO anti-bodies will not cause you to be over-medicated. You need a good level of Levo to lower the TSH to lower the antibody activity ....

Angel_of_the_North profile image
Angel_of_the_North in reply toRach2228

Well, he is very wrong and you need an increase now. On what does he base his opinion? Your free T4 and free t3 are very low in range and your TSH is over range. The probability of your becoming over medicated with a 25mcg increase is less than the odds of your winning the lottery without buying a ticket.

ShinyB profile image
ShinyB

I've had the exact same worry, Rach2228, and even failed a dementia test. But with low in range T4 and T3, that's the reason your and my brain aren't working properly. Your GP sounds a bit of a ninny, as you still need thyroxine replacement if you have high antibodies. Have you tried doing a gluten free diet, which is meant to help a lot if you have high antibodies? It would also be wise for him to test you for your nutrient levels - folate, ferritin, Vit B12, Vit D, which are all critical to thyroid function and can all be very depleted in someone with hypothyroidism. If he won't do them, it's possible to get a private test done through someone like medichecks.com or blue horizon.

Rach2228 profile image
Rach2228 in reply toShinyB

Thankyou I have not tried gluten free and I have had vitamins and minerals tested 2 weeks ago. I have the results of these do I post?

Marz profile image
Marz in reply toRach2228

Yes please post - Low B12 can give the symtpoms you mention :-)

Rach2228 profile image
Rach2228 in reply toMarz

Added

Marz profile image
Marz in reply toRach2228

So what is your negligent GP going to do about your horrendous results ? - you must be feeling poorly ...

ShinyB profile image
ShinyB in reply toMarz

I was being restrained referring to him as a ninny, but negligent is right!!

Rach2228 profile image
Rach2228 in reply toMarz

5mg folic acid

B12 injections once every 3 months

210mg ferrous fumarate

800iu D3

Marz profile image
Marz in reply toRach2228

How often do you take the FF ? Are you taking it with VitC to aid absorption ? Judging by your result you need to increase your dose to three times a day or try a different type of iron.

The VitD dose you have been given wouldn't treat a mouse. You need loading doses and then a good maintenance dose. Or you can start with 5000 IU's daily increasing to 10,000 and re-test at the end of winter. Also take important co-factors - magnesium and VitK2-MK7. Please read as much as you can on this forum especially the REPLIES by SeasideSusie - click onto her name then onto REPLIES to read of her very helpful replies to many others who are struggling due to the ignorance of their GP's.

Do you think the B12 injections are enough - do you need them more often ?

Rach2228 profile image
Rach2228 in reply toMarz

1 iron tablet a day and I leave 4 hours after levo

I don't think I take B12 as often as I would like

Marz profile image
Marz in reply toRach2228

But your Ferritin - Stored Iron in the liver - is at the very bottom of the range - so you need more. Have you had a FULL Iron Profile done and an FBC recently ?

b12deficiency.info/signs-an...

The link above takes you to the signs and symptoms of B12D - please read and check out yours against the list. Do you have neurological symptoms - they come first on the list and for good reason ....

Rach2228 profile image
Rach2228 in reply toMarz

MCV 80.5 (83 - 98)

MCHC 388 (310 - 350)

Iron 6.2 (6 - 26)

Transferrin 12 (12 - 45)

Marz profile image
Marz in reply toRach2228

I am not brilliant at interpreting results of the FBC - but the below range MCV indicates Iron Anaemia - as you can see your Iron is in your boots ! Type Iron Results and Treatment into the Search Box here and see what comes up !

healthunlocked.com/search/i...

Almost 8000 posts about iron Testing and Treatment on this forum alone !!

ShinyB profile image
ShinyB in reply toRach2228

Yes, it would be a good idea to post them. If you use the little arrow under your original post to 'edit' it, it would be best to put all test results you have in your main post, including the ranges. If you haven't got a print out of them, you are legally entitled to a copy!

Rach2228 profile image
Rach2228 in reply toShinyB

Added

ShinyB profile image
ShinyB in reply toRach2228

and has your GP said what he plans to do about your poor nutrient levels?

Rach2228 profile image
Rach2228 in reply toShinyB

5mg folic acid

B12 injections once every 3 months

210mg ferrous fumarate

800iu D3

ShinyB profile image
ShinyB in reply toRach2228

shaws has already tagged a couple of people who are very good on nutrients, so you should get a response from them. From what I can recall, that amount of D3 is very inadequate.

Angel_of_the_North profile image
Angel_of_the_North in reply toRach2228

Not nearly enough and not adhering to guidelines for treatment. Should be 3 201 ferrrous fumarate a day or even an iron infusion to get levels up. Loading dose of vit D is accordance with local area guidelines for severe deficiency and I suspect B12 injections weekly or even daily until levels are decent.

Silver_Fairy profile image
Silver_Fairy

You need to make an appointment with your GP and ask how he is going to manage your deficiencies. He must or he would be negligent as they are all below range.

Dont supplement B12 until you have been tested for PA (you could post in the Pernicious Anaemia forum for advise)

Your TSH is above range so he should be raising your Levo dose by 25mg then testing after 6-8 weeks.

greygoose profile image
greygoose

I'm afraid you have another GP that doesn't understand Hashi's. I do understand why he said what he said, but he was wrong. Let me explain...

Hashi's is what is called an 'autoimmune disease', which means that your immune system is attacking a part of its own body. In the case of Hashi's, it attacks the thyroid gland, and slowly destroys it.

After an immune attack on the thyroid, the antibodies are high, because they come in to clean up the debris and dispose of it. And, as the damaged cells of the thyroid die off, they release all their stock of hormone into the blood, causing levels to rise temporarily. So, doctors who know nothing about thyroid will say 'oh, you've gone hyper'! You haven't gone hyper, because it is a physical impossibility, and the extra hormone will soon be used up or excreted, and you will become hypo again.

But, all this has nothing to do with your dose of levo. It's not because you are on a higher dose that there will be another immune attack raising levels beyond range. In fact, it's quite the opposite, because the lower your TSH - which stimulates the thyroid - the less attacks there will be. Ideally, you need your TSH suppressed - because the less stimulation of the thyroid there is, the less stimulation of the immune system there is. And, in order to suppress your TSH, you need to increase your dose.

Without going into too much detail, that's how it works. So, can you see why your doctor is wrong not to increase your dose? :)

SlowDragon profile image
SlowDragonAdministrator

Your GP is useless and extremely negligent.

TPO antibodies are so high BECAUSE you are under medicated. Getting TSH down, by increasing dose of Levothyroxine with LOWER antibodies

Is there another GP you can see?

How much Levothyroxine are you taking?

You need immediate 25mcg dose increase and bloods retested in 6-8 weeks after each dose increase. 25mcg dose increases until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Your vitamin levels are some of the worst, your B12 especially

Can you post these on PAS healthunlocked

healthunlocked.com/pasoc

I think you need considerabley more frequent B12 injections to start with.

They are the B12 experts

Vitamin D - 800iu in NOT HIGH ENOUGH DOSE

You need loading dose

Look up your local CCG guidelines

Eg Oxfordshire

oxfordshireccg.nhs.uk/profe...

Your ferritin is dire

At very MINIMUM you need ferrous fumerate 3 times daily. Really an iron infusion would give more immediate improvement

See these detailed supplements advice from SeasideSusie on Low vitamins due to under medication

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Ask different GP to test for blood test for coeliac disease too

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"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)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org.uk

Rach2228 profile image
Rach2228 in reply toSlowDragon

100mcg thankyou

SlowDragon profile image
SlowDragonAdministrator in reply toRach2228

Get vitamin supplements sorted urgently

Plus 25mcg dose increase in Levo

You may need further increases

Test for coeliac before changing to strictly gluten free diet

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