Help interpretation of results

[tudors]

I feel really poorly and getting no where these are my results

Serum tsh level 91.56 miu/L

Serum free t4 level 3.9 pmol/L

[Lalatoot]

So what have you been advised to do?

[tudors in reply to Lalatoot]

Been told now for the last 2 weeks a endocrine consultant will be in touch

[Lalatoot in reply to tudors]

A consultants appointment can take months so you perhaps should get back to the gp as you are so low in thyroid hormones. Your it d levels is bad too.

[pennyannie]

Hello Tudors

It's very difficult to say anything from such little information.

Looking back you have been asking the same question over these past years.

We need a full thyroid blood test to include your T3 and T4 blood tests as well as a TSH :

Do you have these please ?

You are clearly wanting help and we are wanting to help you but haven't enough information.

Have you been referred to an endocrinologist - a specialist in thyroid health issues :

Your dose of Levothyroxine is relatively high, though you appear not to be getting any benefits and clearly still hypothyroid.

[SlowDragon Administrator]

Assuming not already gluten free......You need testing for coeliac disease

Vitamin D, folate, ferritin and B12 need testing too

Likely malabsorption and/or low vitamin levels

[tudors in reply to SlowDragon]

Vitamin D is 36 nmol/L

Vitamin B12 is 424ng/L

Ferritin is 298 if/L

[SlowDragon Administrator in reply to tudors]

Low vitamin D obviously needs improving and GP should prescribe 1600iu everyday for 6 months....but likely better to self supplement using vitamin D mouth spray

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need

40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[SlowDragon Administrator in reply to tudors]

No folate result?

B12 and folate work together

supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will improve B12 levels

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

[SlowDragon Administrator in reply to tudors]

Ferritin

Do you have the range in ferritin result...varies for man and women

[tudors in reply to SlowDragon]

No

[SlowDragon Administrator in reply to tudors]

So are you male or female?

Which brand of levothyroxine are you currently taking?

You need URGENT appointment with endocrinologist

[tudors in reply to SlowDragon]

Female and on eltoron

[SlowDragon Administrator in reply to tudors]

What’s eltoron?

An antidepressant?

[tudors in reply to SlowDragon]

No a make of levothyroxine

[helvella Administrator Thyroid UK in reply to tudors]

Is it right that you actually meant Eltroxin?

[tudors in reply to helvella]

Yes

[shaws Administrator]

This is absolutely scandalous, to not be given the very basic i.e. levothyroxine. I had a TSH of 100 so know full well how you are feeling.

I would ring your GP (obviously has no knowledge about those who have hypothyroidism so is saving face I think). Ask him to prescribe 50mcg of levothyroxine.

You need levothyroxine to be prescribed and 50mcg is the starting dose (except if you are very frail with a heart disease) and a blood test every six weeks (make it well in advance) and it should be the earliest possible time, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards. We usually take levo when we get up with one full glass of water and wait an hour before eating. Food could interfere with the uptake.

Tell GP if he hasn't a clue of how to treat you that he should phone the local hospital to speak to an Endocrinologist.

Or you should go to the local A&E and ask for the Endocrinology Dept.

[tudors in reply to shaws]

I’m on 250 levothyroxine daily I take with water on an empty stomach in the morning

[shaws Administrator in reply to tudors]

So I am now assuming your result of TSH of 91 was before you were prescribed levothyroxine?

If you've been taking a daily dose your TSH should have been coming down.

The following is about those who have Thyroid Hormone Resistance which means they can only recover on T3 (liothyronine) alone - not T4 (levothyroxine) - and they must have their dose slowly increased until they are symptom-free. It is by Dr John Lowe who was an Adviser to Thyroiduk before his accidental death.

Few doctors or endocrinologists seem to be aware of Thyroid Hormone Resistance. This is an excerpt from the following link:

"The simple reason for my taking on the endocrine community is that my mission in life is to relieve as much human suffering as I can. We have long had ample research evidence that T4 replacement simply doesn’t work for and is harmful for too many patients. Consider a large community study 2 of T4 replacement conducted in 2002 in England. Hundreds of patients from numerous clinics taking T4 replacement were matched with other patients who were not hypothyroid and not taking thyroid hormone products. The noteworthy results of this study were 3-fold: a hair short of 50% of the hypothyroid patients on T4 replacement still suffered from hypothyroid symptoms, they had a significantly higher incidence of 5 potentially fatal diseases associated with underregulation with thyroid hormone, and patients on T4 replacement had to take more drugs than did the matched controls to lower hypothyroid symptoms and better control other diseases that afflicted only the hypothyroid patients.

We have many such studies that bring into question the safety and effectiveness of T4 replacement for many hypothyroid patients. Whenever such studies are published, endocrinologists often resort to warped thinking to encourage hypothyroid patients to continuing T4 replacement as the only preferable approach. To me, it’s obvious that something other than the scientific findings drive these endocrinologists to advocate the use of only T4 replacement, despite its lack of safety and confirmed harm.

ndnr.com/anxietydepressionm...

This is the procedure to follow when getting a blood test for thyroid hormones:-

1. The earliest appointment possible - even if you make it weeks ahead.

2. It should be a fasting test (you can drink water).

3. Allow a gap of 24 hours between last dose and test and take it afterwards.

Always get a print-out of your results, with the ranges. Ranges are important as labs differ and ranges make it easier for members to comment.

[tudors in reply to shaws]

I am struggling waking up each day and doing anything I’m scared of going into a com

[NWA6 in reply to tudors]

If you feel likely to be on the brink of myxoedema coma I’d get someone to take you to A&E. that might be one way to get an Endos attention? With your FT4 levels so low I wonder what your FT3 levels are 😞

[SlowDragon Administrator in reply to tudors]

Print out your thyroid results and go to A & E in morning

[shaws Administrator in reply to tudors]

I hope I didn't make you feel worse but the majority of doctors seem to have no knowledge at all. If you don't feel well I'd still make a visit to the A&E - there's nothing to lose especially if your TSH is still very high.

I am sure the A&E will have someone who will listen to a patient whose TSH was so high.

The remedy is to have sufficient hormones to bring it down but increases have to be gradual. You might get a doctor who understands about hypo and it might be worth your while to visit A&E. The professionals are supposed to prescribe when TSH goes to 10 but in other countries they prescribe when it is 3+. So you and I have had very high TSH and I am well now and it is thanks to Thyroiduk before this forum began. So it's good we can get answers more or less immediately. Members are knowledgeable and helpful.

[shaws Administrator in reply to tudors]

I doubt you will go into a coma as you are taking Eltroxin which is T4 only and is inactive but should convert to T3. So, even if you feel very tired, this could be due to you not yet being on a suitable dose of T4 to convert to T3 (which is the Active Thyroid Hormone needed in our T3 receptor cells) but some of us don't do so effectively. You will improve.

You take Eltroxin on an empty stomach when you get up preferably, with one full glass of water as stomach is empty and hormones wont be affected. Then wait an hour before you have breakfast.

Is the 91 TSH the latest result or was it the number you were diagnosed with?

It is a big learning curve and if you're like me, I had never heard of hypothyroidism but neither did my GP as I had to diagnose myself and that was with thanks to Thyroiduk.org.uk.

I know how very unwell we can be but we will improve with the help of the members. It isn't a quick fix but steady increases of levo until we feel well again with a TSH of around 1 or lower.

Follow the procedure above and make your appointment well ahead so that you get the earliest appointment and follow advice above, i.e. fasting etc.

Always get a print-out from the GP and ensure that the results are followed by the 'ranges'. Ranges are important for members to respond to your queries.

You can improve although it doesn't feel as if levo is making any difference but that's because it has to be slowly increased.

[SlowDragon Administrator]

How do you take your levothyroxine?

Do you always get same brand of levothyroxine?

Important to always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after

Avoid calcium rich food within four hours of levothyroxine

Don’t take vitamin D, calcium, HRT or any PPI like omeprazole within 4 hours of levothyroxine

What other medication, if any are you taking?