With my sister in Ireland after labs came back ... - Thyroid UK

Thyroid UK

137,926 members161,756 posts

With my sister in Ireland after labs came back - please help with advice…

Butterflycake1 profile image
14 Replies

Hello everyone, I posted previously - briefly, my sister has had cognitive decline for about two years and was diagnosed with hypothyroidism about four years ago. Her Levo has just been increased on 50 to 75 mcg. She is not on T3 or NDT. (I didn’t know about NDT until I came on this portal). She only takes cod liver oil as a supplement.

She had some blood tests done this week but was not tested for FT3 and FT4 as I requested (or reverse T3). I was told she was in range for her TSH (see below).

Her TSH was 35.7g/dl and in Ireland, you are in range when you are (0.27 to 4.20). I pleaded with the doctor to have the FT3 and FT4 tests carried out which he agreed to and the results will be back next Thursday.

She did a memory test with her doctor and he confirmed there is some cognitive decline. (He agreed that hypothyroidism can cause cognitive decline in some people). He made a referral for a CT scan. He is also referring her to a consultant physician; not an Endo. Her MRI that was done in Perth last year is being sent over to him. My sister said there was nothing that showed up on the MRI scan last year, but we still need to check it!

The wait for a CT scan in our town is approximately two months; that is if you do not go private. He told me her lab results were ‘normal.’ I said to him that I would like to have a copy of her results and go through them myself.

Her MHCH is 35.7g/dl (range 30.0-35.0)

TSH 3.76

Anti-Thyroperoxidase Ab 305.89 IU/mL - it should be less than 5.61 It is flagged as “High”

(This is very high, so I don’t know why he said her results were normal).

Cholesterol 8.0 nmol/L High range less than 5.2

LDL 5.72 nmol/L High 0.0-2.59

Abs Lymph 0.95 10 9/L Low (range 1.0-3.0)

Any any analysis of the results would be gratefully appreciated. FT3 and FT4 I’ll post next week.

Thank you for your help.

Written by
Butterflycake1 profile image
Butterflycake1
To view profiles and participate in discussions please or .
Read more about...
14 Replies
Butterflycake1 profile image
Butterflycake1

TSH is 3.76 (range in Ireland is 0.27-4.20)

Her MCHC is 35.7g/dl High range (30.0-35.0)

humanbean profile image
humanbean

For future reference, you can edit your posts.

Click on 'More' below the post you want to edit, click on 'Edit', make your changes, and don't forget to save your post.

The collection of results you've given are a very strange mixture. Have you left out all results that are in range? MCHC is just one part of a Full Blood Count. I would normally expect to see a lot more results for it.

labtestsonline.org.uk/tests...

Memory problems could be caused by low nutrients - iron, ferritin (iron stores), Vitamin B12, folate.

A lot of people have cognitive issues with low Free T3. With a TSH as high as your sister's, I would expect her Free T4 and/or her Free T3 to be low in range or possibly even under range.

Anti-Thyroperoxidase Ab 305.89 IU/mL

This result means your sister has Hashimoto's Thyroiditis or Ord's Thyroiditis. Another possible name is autoimmune thyroid disease. The end result in both cases is a destroyed thyroid - although it may take many years. It is the immune system that does the damage. It treats the thyroid as a foreign body.

en.wikipedia.org/wiki/Hashi...

In Hashi's the thyroid swells and this shows up as a goitre.

en.wikipedia.org/wiki/Ord%2...

In Ord's the thyroid shrivels up.

In both cases the condition eventually causes hypothyroidism.

My cholesterol is as high as your sister's. My Total, HDL, and LDL cholesterol have been over the range or high in range. I have chosen to ignore mine. I will not take statins.

I do worry about my triglycerides though - they were very good for years, but in recent years they have zoomed up. High intake of sugar and poor quality carbs e.g. pizza, biscuits, cakes, chocolate, ice cream are the culprit.

Cholesterol and triglycerides info
Butterflycake1 profile image
Butterflycake1 in reply to humanbean

Thank you, humanbean. (Great name!). What would you suggest my sister do? I’m still leaning towards NDT for her, although it doesn’t seem to be prescribed in Ireland. We will get a private MRI scan next week. If nothing shows up on the scan then it has to be thyroid related/hormonal.

humanbean profile image
humanbean in reply to Butterflycake1

I would get TSH, Free T4 and Free T3 all tested from the same blood sample first. The blood should be drawn at around 8am - 9am, having fasted since finishing her evening meal the previous evening. It is also essential to have avoided liquids apart from water (which should be drunk freely) since after the evening meal.

I would also suggest getting Vitamin D, Vitamin B12, folate, and ferritin tested as well, under the same conditions as the thyroid testing. If nutrient levels are very low then tolerating thyroid hormones is very difficult.

You might find this thread of interest :

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

TSH 3.76

Anti-Thyroperoxidase Ab 305.89 IU/mL -

it should be less than 5.61 It is flagged as “High”

high thyroid antibodies confirms autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Presumably this test was BEFORE dose increase in levothyroxine to 75mcg?

You can’t rush thyroid hormones, especially if been hypothyroid a long time (and elderly?)

At moment she needs to SLOWLY increase dose levothyroxine over coming months

Approx how much does she weigh in kilo?

Retest thyroid levels 6-8 weeks after dose increase

If not ready for next dose increase…..retest again in another 6-8 weeks

ALWAYS Test thyroid levels early morning and last dose levothyroxine 24 hours before test

Meanwhile essential To get vitamin D, folate, B12 and ferritin tested

What vitamin supplements is she currently taking?

With autoimmune thyroid disease low vitamin levels are extremely common

Also low vitamin levels more common as we get older

Butterflycake1 profile image
Butterflycake1 in reply to SlowDragon

Thank you so much for your response. My sister weighs 66.68 kilos - about 10.5 stone. 5ft 7”. She’s 59; exercises and eats well. High Cholesterol (even before the diagnosis because she was eating chocolate at night to offset work stress - her words!). She’s always been between 9.5-10.5 stone as an adult.

She’s on Eltroxin 75mcg daily. She has been prescribed the same brand on a 75mg dose; 50mcg and 25mcg (one of each) first thing in the morning. (Increased from 50mcg to 75mcg last week). (Was taking 50mcg of Eutroxsig in Australia before April 22). (I was researching the ingredients of Eltrixon and I noticed that there’s almost 50% of lactose in it. I wonder why so much?). She dislikes lactose, doesn’t drink milk, but she’s not allergic to it. Her hair is not falling out; sleeps well, low anxiety, but has body temperature issues - she’s either too warm or too cold. When I have warm feet, hers are cold!

Folate and Vitamin B12 levels are normal and mid range (Vit B12 and Folate analysed using Roche Cobas 800 series assay). Calcium 2.50 mil/L (range 2.15.2.50). Liver and renal results were all mid range.

NO Vit D tested yet or iodine. No urine test. Pending, TSH, FT3 and FT4 results next week. No RT3 given but I asked for it.

Will book in an MRI (no radiation) privately rather than a CT scan which is what the doctor suggested. MRI taken last summer is on way from Perth. The more I research the more I’m convinced that her cognitive decline is not because of any brain damage suffered, but because of undermedication of T4 with no T3 medication of the active hormone. I realise every person responds differently to medication but I tend to favour NDT for her because of it’s successes.

A very big thanks again for all your help and everyone else who has taken the time to respond to me.

SlowDragon profile image
SlowDragonAdministrator in reply to Butterflycake1

High cholesterol is hypothyroid symptom….not diet related and will improve as dose levothyroxine is increased

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

How long since dose went up to 75mcg?

Bloods should be retested 6-8 weeks after each dose increase

If not ready for next increase then, retest again in another 6-8 weeks

She is highly likely to need to increase dose to 100mcg everyday in a few months time

How soon difficult to tell

No point testing iodine levels unless she’s vegan

Levothyroxine contains all the iodine she needs

Vitamin D does need testing

vitamindtest.org.uk/

Or Let’s get checked probably do one

Folate and Vitamin B12 levels are normal and mid range

Please add actual results and ranges

Optimal serum B12 at least over 500

Active B12 at least over 70

Folate at least half way through range

I would not recommend changing from levothyroxine at this stage …..only consider adding T3 or NDT if levels don’t improve on full replacement dose levothyroxine

NDT is extremely expensive, impossible to get other than privately or self sourcing and worry of supply an ongoing issue

SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine was 50mcg tablets

Which brand of levothyroxine is 75mcg

Or has she got 50mcg and 25mcg tablets….are they same brand

Litatamon profile image
Litatamon

Does she have a recent b12 level - a deficiency there can cause serious cognitive decline.

All the best to you both.

how old is she? Cognitive decline can come with the hormone issues in peri menopause. Has she had her estrogen levels tested?

Nellies47 profile image
Nellies47

Hi.I I'm from Ireland. I have hypothyroidism since 14yrs old. I'm now late 40's. In April I had bloods in private hospital pre op and t3 was part of the thyroid bloods there. T3 is not tested routinely in HSE hospitals. Anyway it was very low.

My gp reluctantly referred me to endocrinologist who emailed her to say no treatment necessary. I posted here and then on Facebook Ireland thyroid page. Thank you to here I learned that my 100mcg eltroxin was inadequate, not converting to t3 and got very helpful advice.

Now I should say that for yrs I have been saying to my gp that I have symptoms, extreme fatigue, brain fog, poor concentration, severe restless legs, worsening constipation, numbness and pins and needles in hands and feet, freezing limbs, low mood on antidepressants and more.....

Anyway irish thyroid Facebook page were also very helpful....endos in ireland not helpful but there are a few gps with special interest in thyroid that arrange appropriate bloods and treat with NDT etc. I'm on thybon since mid September and I have got some energy back, I am able to think clearly and my restless legs is improving and I need less meds for constipation. I have 2 other autoimmune diseases so I know my symptoms overlap so it's hard to know if I'll get much better, but I definitely feel improved. I'm not sure I can name the Dr. I see for my thyroid on this page.

Butterflycake1 profile image
Butterflycake1 in reply to Nellies47

Hi Nellie, thanks for your response. You can message me privately and I will respond.

lovelab profile image
lovelab

One of the worst symptoms for me was cognitive decline ... I actually thought I might have early onset if Alzheimer and it was a frightening experience. . I was infact Hypothyroid and presume had been so for a few years without knowing it. As soon as I was put on levothyroxine and my TSH was under 1, I saw great improvement. Still not 100 per cent because am a bad converter from T4 to T3. As soon as my memory declines, my bloods usually tell me my TSH is too high. It also affects my eyesight and hearing. And doctor increases my dose.My mother has bad congnitive decline and I recognised similar symptoms to me. But her TSH was around 1. NHS refused to test her FT4 & FT3 so I got bloods done privately for her and it showed below range FT4. So probable Central hypothyroidism when the brain is not sending correct info to thyroid. They wanted to cast her off because of her age and just give her Alzheimer drugs. We are now fighting for her to just get a GP appointment due to doctor shortages to increase her Levothyroxine from 25 mcg up to next dose. That is another issue. Hope these experiences help your sister ... you need to advocate for your sister because she may not have capacity to do so herself. Take care.

Charlie-Farley profile image
Charlie-Farley

Hi Butterflycake1

Good advice above- vitamins are extremely important to allow the body to effectively utilise Levothyroxine.

High cholesterol is also a symptom of under medication.

Has your sister even got into a full therapeutic dose yet? If not may be too soon to consider jumping ship to NDT.

NHS guidelines provide a dosing ratio of 1.6 µg per kilogram body weight. This is only a guide but it worked for me.

I have a low/suppressed, though just about detectable TSH (last time I looked) and fought for a full replacement dose whilst TSH under range and FT3 and FT4 “in range” - one where I was symptom free.

TSH is the least reliable measure and the reason 10’s thousands of people are living half lives, accepting the GPs word for it.

So much new research out there debunking TSH and flagging that the risks associated with under medication are as great (if not greater). The reality is GPs do not have the time to read all this stuff and some may be resistant to even accepting new knowledge.

I did not find this to be the case with my surgery as a whole although I did have some pushback from a little ignoramus who I put in her place.

Definitely submitting hardcopy report with references and interpretation of my own private blood tests was beneficial. The forum are always happy to give feedback on blood tests and I have learnt so much from being on here.

You may also like...

Advice on labs needed please

previously. TSH 0.1 mIU/L (0.3 - 4.5) -4.8% Free T4 (fT4) 1.3 ng/dl (0.8 - 1.8) 50.0% Free T3...

Advice on my sister's blood results please?

blood test and her results have come back with T4 13 and TSH 4.39. Doctor said this was fine as TSH...

Need Help understanding the newest lab work, please!

willing to test. As she stated again, that she only cares about the TSH. Thus, That's all I get...

Help please for my sister with an underactive thyroid

over the last three years we’ve noticed a decline in her cognitive abilities. I recently read from...

Help with hyperthyroid diagnosis for my sister

was worried about my sister so I made her take a BH blood test and it appears she is overactive so...