Help please for my sister with an underactive t... - Thyroid UK

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Help please for my sister with an underactive thyroid

Butterflycake1 profile image
17 Replies

My sister is 59 and has an underactive thyroid, - diagnosed for about eight years now. (No history of this in our famiky). She’s been on Levo thyroxine for all this time and over the last three years we’ve noticed a decline in her cognitive abilities. I recently read from an expert endocrinologist in Los Angeles that Levo thyroxine only treats T4, whereas T3 is the real driver or regulator of the thyroid levels. Also, he said that Levothyroxine can actually reduce existing T3 levels. I’ve also read that memory loss is symptom of Levothyroxine.

All her TSH reports are normal. Exercise, sleep and diet and pretty good. She’s not taking any vitamins or other prescription meds.

She just went to a young doctor this morning who wanted to increase her level of thyroxine - which, as I now understand, only supports T4. She lives in Ireland but is willing to come over to the UK for treatment (I live in the Home Counties area). She lives in Eire.

Before we look at any Alzheimer’s issues, and she does tick a number of the boxes for this condition, (although there is no genetic history of dementia in our family), I would like to get some help from a holistic endochronologist to have her hormone (oestrogen as well) levels and vitamin levels (especially Vit D) checked. Thank you for any advice or information as to where we could get help.

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RedApple profile image
RedAppleAdministrator

Welcome to the forum Butterflycake1.

Before any useful advise can be offered by members, we do need to see full details of the most recently tested thyroid blood levels. Ideally this would be TSH, FT4 and FT3, plus thyroid antibodies. Your sister should be able to obtain these from her doctor.

Also, problems with mental health (cognitive decline, alzheimer like symtoms etc) can often be improved by a change of levothyroxine dose (either more or less). What dose is your sister currently being prescribed?

greygoose profile image
greygoose

Levo doesn't 'support' anything at all. Levo IS T4. Synthetic T4. And, T4 converts to T3. So, I really don't understand what you've been reading. Can you provide a link to the article?

I recently read from an expert endocrinologist in Los Angeles that Levo thyroxine only treats T4, whereas T3 is the real driver or regulator of the thyroid levels. Also, he said that Levothyroxine can actually reduce existing T3 levels. I’ve also read that memory loss is symptom of Levothyroxine.

That sounds like a lot of mumbo-jumbo. This endocrinologist might be 'an expert' but expert in what? Most endos are diabetes specialist with some very peculiar ideas about thyroid.

As I said, levo is T4. T4 converts to T3. Yes, T3 is the active thyroid hormone, needed by every single cell in the body. But, I cannot imagine what he means by 'driving or regulation thyroid levels'. What thyroid levels? We're only interested in T4 and T3.

As for levo 'reducing existing T3 levels'... Where would that T3 be coming from? T3 levels don't exist as a constant. With a healthy thyroid, a certain amount of T3 is produced every day - when you're hypo, less so. When you're hypo and taking levo as thyroid hormone replacement, your T3 comes from conversion of T4 to T3. So, none of that makes any sense.

Do you mean that memory loss is a side-effect of levo? Because you get sympoms of diseases and side-effects from 'medication'. Memory loss is a symptom of hypothyroidism. I've never heard of it being a side-effect of levo. But, people to tend to blame all their hypo symptoms on the treatment, so it's possible that someone, somewhere said that. But, I really don't think it's true. Levo isn't a drug, it's a hormone.

All her TSH reports are normal.

Just testing TSH is totally inadequate. For one thing, when a doctor says 'normal', all he means is 'somewhere within the range. But the ranges are too wide, so just being 'in-range' is not the same thing as 'optimal'. The aim of thyroid hormone replacement is to get the TSH down to 1 or under. But, once the TSH gets below 1, it is a very bad indicator of thyroid status. So, the TSH may look good to an uneducated doctor, but the patient can still be very hypo. She needs her FT4 and FT3 tested urgently. But, just out of curiosity, what was her latest TSH?

She’s not taking any vitamins or other prescription meds.

Maybe she should be taking some vitamins. Has she had her nutrients tested: vit D, vit B12, folate and ferritin? They all need to be optimal for thyroid hormone to be used efficiently by the body.

She just went to a young doctor this morning who wanted to increase her level of thyroxine

If a doctor wants to increase her levo then she really does need it! Doctors tend to be very conservative with their increases. And, you really shouldn't be afraid of levo on the basis of the strange things you've been reading. It's only a hormone - but a very necessary hormone.

You are very wise to be checking out her thyroid before considering Alzheimer’s. It's my belief that belief that many people have been diagnosed with this condition when the real problem was under-medication for hypothyroidism, and/or B12 deficiency. So, the first thing that should happen is complete testing for thyroid:

TSH

FT4

FT3

TPO antibodies

Tg antibodies,

vit D

vit B12

folate

ferritin

and, possibly, zinc and copper.

Then, and only then, will you have a clear idea of her thyroid status. But, please don't believe all you read on the internet. :)

Butterflycake1 profile image
Butterflycake1 in reply to greygoose

Thank you for this very useful information. I’m still learning.

greygoose profile image
greygoose in reply to Butterflycake1

I'm afraid there's a lot to learn! And it doesn't help that there's a lot of misinformation floating around out there. :)

Butterflycake1 profile image
Butterflycake1 in reply to greygoose

Hi Greygoose

I was reading today thyroidpatients.ca (endocrinologists) who said “ We do NOT convert all our T4 into T3. Some of us make excess Reverse T3 (RT3) which leads to T3 depletion. Under the para “Our personal T4 tipping point” it mentions cognitive decline which is definitely what my sister is experiencing. I’m interested to hear what you think about what they said. My sister will ask to have her TSH (previous TSH levels all in the normal range) and individual T3 and T4 levels tested. I’ve heard that she may have to go private for T3). I’m still trying to understand it all.

greygoose profile image
greygoose in reply to Butterflycake1

Sorry I didn't answer this before, I didn't see it, for some reason.

Oh dear! The dreaded rT3 raises its ugly head again. And that head is in the shape of a red herring! I'll try to explain...

It's true, we don't convert all our T4 for T3, we never do that. About one third is converted to T3 - if we convert correctly - and one third to rT3 (which is then converted to T2). And the rest is stored/excreted.

The 'problem' arises when we are poor converters, for whatever reason - and there are many reasons - so the FT4 rises high in range - or even over the top of the range, but the FT3 remains low. And at a certain point - “Our personal T4 tipping point”, which is different for everyone - the T4 starts converting to more rT3 than T3. This is a natural safety measure to stop people having too much T3 in their system.

So, all that is fact, but then " it mentions cognitive decline". OK, but does it explain that the cognitive decline is due to the low T3, it's a hypo symptom, and has nothing to do with the rT3 itself. rT3 is inert, and therefore doesn't cause symptoms. And, in any case, it only stays in the body for a couple of hours before being converted to T2. So, rT3, whatever its level, is not the problem, it's the result of the problem. And the problem is poor conversion to T3, meaning that FT3 is too low.

Hope that explanation is understandable, but if you have any questions, don't hesitate to ask. :)

My sister’s TSH came out at 3.48 from a blood test done last week; cholesterol high - she’s not overweight and eats well.

That TSH is much too high. It should come down to 1 or under. Over 3 means she's still hypo.

Doesn't matter how well she eats nor how much she weighs, that has nothing to do with cholesterol. High cholesterol is a hypo symptom, due to low T3. Raise the FT3 and all her symptoms, including cognitive decline and high cholesterol, should go away. So, whatever her FT3 level - and doctors are happy if it's just scrapping in at the bottom of the range because they have no idea what it is! - whatever her FT3 level turns out to be, her TSH and high cholesterol are saying it's too low for good health, both physical and mental.

Butterflycake1 profile image
Butterflycake1 in reply to greygoose

Thank you very much, yet again!

Have you read Dr Sarfaz Zaidi’s book, “Hypothyroidism and Hashimoto’s Disease?” He’s an endo in CA. It looks like an informative read.

greygoose profile image
greygoose in reply to Butterflycake1

No, I'm afraid I haven't. I'll google him. :)

Butterflycake1 profile image
Butterflycake1 in reply to Butterflycake1

Dr Zaidi said that he’s had positive results with his patients when he treats for both T3 and T4. I guess like everything, it depends on the patient and how they respond to treatment.

greygoose profile image
greygoose in reply to Butterflycake1

It also depends on the doctor and the depth of his knowledge. Not all doctors are in favour of treating with T3. Which is rediculous because T3 is the active hormone, but that's just a reflection of their level of education - almost zero in some cases.

The first line of treatment is usually levo, which is T4 only. Some people convert that well to T3, so as long as they get enough levo, there's not too much of a problem. But, not everybody converts well. And, to make matters worse, most doctors refuse to even test T3 so one has no idea how well one converts, or if one needs to take T3. In an ideal world, FT3 testing and T3 therapy would be available to everyone. But I'm afraid this world is far from ideal.

Butterflycake1 profile image
Butterflycake1 in reply to greygoose

My sister’s TSH came out at 3.48 from a blood test done last week; cholesterol high - she’s not overweight and eats well. That’s all the doctor told her - it doesn’t look like it was a full blood count with so little information. We have asked for a full blood count and analysis on the key indicators for thyroid function and I will be there with her in Ireland to get the results on the 10 November (she’ll get her bloods done in the 3rd). (I live in England). She’s currently on 75mg of Levo. I don’t know much about the thyroid, but I know a lot more since I’ve been on this portal. The goal is to find out what is causing her cognitive issues. Thanks.

PurpleNails profile image
PurpleNailsAdministrator

Welcome to forum.

Was only TSH tested?

The Thyroid Stimulating Hormone is a pituitary hormone which signal thyroid to increase or decrease.  Doctors assume low mean thyroid hormones too high, high TSH means thyroid levels are low but TSH isn’t reliable.What are the free - FT4 (Thyroxine) & FT3 (triiodothyronine) levels? 

First find out if the FT4 is adequate - most feel well with FT4 in top 3rd of range.  

Once FT4 is good you can then establish if the body is able to convert sufficiently to FT3.    

FT3 should be at least half way through range.  As T3 is converted from T4, T4 must be good.  Taking LT4 can cause the TSH to lower which reduces the output of thyroid & so this can make both T4 & T3 to lower in contrast to TSH.   T4 doesn’t directly cause the T3 to drop.

Good nutrients help levo to be absorb and convert well.

Testing Folate, ferritin, vitamin D & B12 will help know if low nutrients contributing to causing poor conversion. 

Low nutrients are common with hypothyroid & mimic / compound symptoms.  Most can manage well on synthetic levo (LT4) but a small number have a persistent conversion issue despite good FT4 levels & nutrients.

Some private doctors can offer ‘naturally desiccated thyroid’ (from animal thyroid)  so contains T4 & T3 - this was the original treatment but has now been entirely replaced but LT4 in mainstream treatment.  Synthetic Liothyronine T3 is in theory available “if clinically needed” but the criteria is such that it’s virtually prohibited.  

Before considering a private doctors arrange a full test.  

Let’s get checked is a private blood testing company in Ireland (I believe). 

If she visits you in UK - there are many options & you can assist in ordering test and taking sample as can be tricky alone, particularly if she’s unwell. 

Here’s a list of companies offering different options, some packages include thyroid function, key nutrients and thyroid Antibodies.  (Eg Medichecks advanced) Others a basic function only.  Some also have discount codes available.

thyroiduk.org/help-and-supp...

You order test online the kits arrives via post sample taken by finger prick (extra fee for private venous draw). Post back and results available online quite quickly.

Testing should be as close to 09.00 after fasting overnight (lots of water) delay dose until after draw.  Avoid supplements containing biotin 3 days before as biotin can affect test.  Longer if on high biotin dose.  This shows highest TSH lowest FT4.  If her previous test have been taken differently it might show a result with lower TSH ie in range when if taken earlier it would be above range.

Butterflycake1 profile image
Butterflycake1 in reply to PurpleNails

Thank you for your reply. Much appreciated.

Butterflycake1 profile image
Butterflycake1 in reply to PurpleNails

hi PurpleNails, I spoke to my sister the other day and she said that from her recent blood test her TSH was 3.48 and her cholesterol high; (no measurement given to her by doctor). She is not overweight and exercises every day. (I wonder could it be the Levo that’s causing the high cholesterol?). She’s on 75 mg of Levo. She is having her bloods retested on the 3rd of November, as we requested a full blood count. I will fly to Ireland to be with her on the 10th November when she gets the results. I don’t know a lot about the thyroid but I know a lot more than when I first joined this portal a week ago! Do you know if TSH 3.48 is high? The goal is to try to get to the bottom of her cognitive issues and whether the Levo is at the right level and to check T3 and vitamin levels. Thanks for your help.

PurpleNails profile image
PurpleNailsAdministrator in reply to Butterflycake1

A TSH of 3.48 is in range but most feel well if it’s lower eg 1.

This usually means that the FT4 & FT3 are higher in their ranges - so my guess would be the FT4 & FT3 are too low.

Low FT3 causes cholesterol to rise.  & the guidance is that thyroid issues should be addressed before considering statins.  Doctors tend to suggest statins early on. 

Ask for 25mcg daily increase - as there’s lots of room for the TSH to drop before it get below range & if she’s having hypo symptoms doctors should agree.

nellie237 profile image
nellie237

Hi Butterflycake,

A couple of years ago both my daughter an I were getting concerned that I was showing signs of dementia (I'm 63yrs). Aside from the short term memory loss, I had difficulties with all sorts of things like: I couldn't remember a route to an office I'd worked in for 7yrs.........that one made us look at each other like "OK, maybe I need to see somebody about this". My handwriting looked like I was very, very old too.

It transpired that I am coeliac, and my nutrients were all low/deficient. I think Vit D deficiency was the culprit for me with regard to the dementia symptoms. So, yes I would also strongly recommend that your sister gets nutrients checked first. Fingers firmly crossed fr you.

Butterflycake1 profile image
Butterflycake1 in reply to nellie237

Thank you so much nellie237. All this information on this portal is invaluable.

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