Thyroid Bloods Advice?: Hi, I wonder if anyone... - Thyroid UK

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Thyroid Bloods Advice?

saffy1ruby profile image
13 Replies

Hi, I wonder if anyone has any advice re : thyroid bloods.

I got some great advice a couple of years ago. I was trying NDT as my GP refused to prescribe levothyroxine despite symptoms and family history. To cut a long story short I visited a private doctor at the beginning of 2020 for HRT advice and she took thyroid bloods alongside hormones which were:

14/02/2020

TSH. 3.41. (0.27-4.2)

Free T3. 4.95. (3.1-6.8)

Free T4. 12.5. (12-22)

She immediately started me on 50mg levothyroxine and wrote to my GP advising I should be given an NHS prescription for this. My GP refused, so the private dr carried on prescribing.

I began to feel a lot better quite quickly but after a couple of months symptoms came back my dose was increased to 50mg and 75mg on alternate days.

My next bloods were

16/09/2020

TSH 3.41

Free T3. 5.3. (3.1-6.8)

Free T4. 13. (12-22)

Dosage was upped to 75mg and next bloods

02/02/2021

TSH. 2.45. (12-22)

Free T3. 3.97. (3.1-6.8)

Free T4. 12.3. (12-22)

Dosage was upped to 75mg and 100mg on alternate days.

While my health has improved I still have many symptoms.

In March 2021 we got a new GP in the practise who looked at all my blood results and letters from private dr and immediately issued a prescription for levothyroxine (I had been paying for it privately all this time) and was very helpful and understanding. However she rang me to say that my previous GP had discussed my high dose of levothyroxine and requested thyroid bloods repeated.

24th May 2021

TSH 2.95.

Ferritin. 90.9. (30-400.0)

Folate. 12.9. (3.3-99999.0)

B12. 649. (190-910)

T3 and T4 and vit D were not requested. I am worried that they will decrease my dose and also because on T4 I have never felt completely well and my T3 and T4 levels never lift out of the lowest range. I really do not know what to do next, and would appreciate any advice

Kind Regards

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humanbean profile image
humanbean

Dosage was upped to 75mg and 100mg on alternate days.

However she rang me to say that my previous GP had discussed my high dose of levothyroxine

Your dose of Levo cannot be described as high by anyone who knows anything about the thyroid.

02/02/2021

TSH. 2.45. (12-22)

Free T3. 3.97. (3.1-6.8) --- 23.5% of the way through the range

Free T4. 12.3. (12-22) --- 3% of the way through the range

The reference range for TSH above is wrong. 12 - 22 is one of the standard ranges for Free T4, not TSH.

I know your dose has been increased since you got the above results. But your latest TSH has actually risen, suggesting there is no justification whatsoever for reducing your dose.

24th May 2021

TSH 2.95.

I actually wonder if you have central hypothyroidism. This is a condition in which the thyroid may be perfectly healthy, but the pituitary isn't producing enough TSH. You would expect your TSH to be higher than it is with such low levels of Free T3 and Free T4.

TSH prods the thyroid into making and releasing Free T4 and some Free T3., but if TSH is too low then your thyroid hormone levels will be too low as well.

Your doctors are being extraordinarily slow and cautious in treating and dosing your thyroid, and this just comes across to me as them being sadistic.

Read this link - it might be helpful to you :

healthunlocked.com/thyroidu...

Ferritin. 90.9. (30-400.0) --- 16% of the way through the range

Folate. 12.9. (3.3-99999.0)

B12. 649. (190-910)

Your ferritin (iron stores) is quite low in range. Many people on the forum feel best when ferritin is mid-range or a bit over, which would be approx 215 - 260 with the range you've supplied. It might be helpful to have an iron panel done. This will tell you if your serum iron is below range, low in range, mid-range, high in range or over the range. If your serum iron is quite high then taking iron supplements may just raise your serum iron even further without improving your ferritin at all.

Your folate is also a bit too low. I hate those ranges which have no "top". Having a folate level of 999999 is almost certainly NOT healthy! I try to aim for a level of high teens, say 15 - 20, but some people go higher. In some cases the top of range is around 60 - 70, in which case I would want a result from that test of around 35.

Your B12 is not too bad. Some of us feel better with a result around top of range, up to about 1000. But this would have to be your choice.

See this link on folate :

chriskresser.com/folate-vs-...

Since neither of your folate or B12 are desperately low, I would suggest that a good choice to raise levels is to take a good quality B Complex. Two of the favourite B Complex supplements on this forum are :

1) Thorne Research Basic B - full dose is one tablet per day.

2) Igennus Super B - full dose is two tablets per day. After results for B12 and folate are a bit better you could try reducing dose to one tablet per day.

JAmanda profile image
JAmanda in reply tohumanbean

I was thinking the same - that it's central hypothyroidism. I would be asking my Doc to look at what might be causing that. It's curious to me that the Levo barely affects your t4 and tsh levels. How do you feel? I'd be insisting on a good dose increase of t4 as what you're taking is barely making any difference. Are you fatigued?

saffy1ruby profile image
saffy1ruby in reply toJAmanda

Thanks for the reply and am going to bring this up with my GP, you are right the levo has not really made much difference with my TSH levels although I definitely feel better with it, although still have fatigue and other symptoms. Thanks again

SlowDragon profile image
SlowDragonAdministrator

75mcg/100mcg levothyroxine alternate days is not a high dose

Do you always get same brand of levothyroxine at each prescription

Which brand

Looking at ferritin range ...are you male or female

TSH is still too high for someone on levothyroxine

You need dose increase to 100mcg everyday and bloods retested 6-8 weeks later

Obviously you need to get vitamin D tested

What vitamin supplements are you currently taking

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Guidelines are just that ....guidelines.

Some people need more .....some less

healthunlocked.com/thyroidu...

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Suggest you get vitamin D tested now

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Plus Push for dose increase in levothyroxine to 100mcg everyday

You also need thyroid antibodies tested at next test (included if testing privately)

saffy1ruby profile image
saffy1ruby in reply toSlowDragon

Hi, thanks so much for all the information, it has been so helpful. I am a 58 year old female, with a family history of hypothyroidism. I am taking vit D oral spray with K2, iron oral spray, B12 oral spray and a B complex oral tablet, but have a history of low ferritin levels. I have had antibodies tested several years ago, i did test positive for these but will need to find results, when my GP tested these a year later, she said they were fine. I will find results to post. My levothyroxine brand has always been the same. Thanks again

SlowDragon profile image
SlowDragonAdministrator in reply tosaffy1ruby

Autoimmune thyroid disease is confirmed if antibodies were high at any test.....even if antibodies subsequently drop into range you still have autoimmune thyroid disease

Important to stop taking vitamin B complex, or any supplements that contain biotin, a week before ALL BLOOD TESTS as biotin can falsely affect many blood tests

saffy1ruby profile image
saffy1ruby in reply toSlowDragon

Thanks, I do take biotin, forgot to say, but remembered to stop it a week before. So because I have had previous high antibodies does this mean, its autoimmune? My previous GP says that is not the case , but i don’t really listen to her anymore. I have been gluten free for over 4 years now. It would be great to have a GP that advises as well as this site. Thanks again

tattybogle profile image
tattybogle

" my previous GP had discussed my high dose of levothyroxine "

But 75/100 (87.5mcg) is a lower dose than most people on Levo take.

You could reasonably describe 150mcg/175 mcg as a 'relatively' high dose .

You could certainly describe anything over 200mcg as a 'high dose'.

From reading 1000's of posts on here , and from my own experience, the majority of people take somewhere between 75 and 150mcg.

I used to take 150mcg for many years . after menopause it became 125 then 100 (which proved not enough), so now take 112.5 mcg.

saffy1ruby profile image
saffy1ruby in reply totattybogle

Thanks so much for your reply, my GP thinks this is a high dose but I am menopausal, does this make a difference? Thanks again

tattybogle profile image
tattybogle in reply tosaffy1ruby

does menopause make a difference .. yes and no :) it makes no difference to the dose prescribed, it makes no difference to what is considered 'high' or not.... however some people do find that the dose they were settled on before menopause may need adjusting very slightly after menopause.... (this could possibly be to do with oestrogen which does have a relationship to thyroid hormone transport around the body ... sort of :) or could be something else ? .. it doesn't happen to everyone, plenty of people on here did not find dose needed to be changed after menopause )

However..... this is NOT an reason for not giving someone a big enough dose in the first place.

My usual dose was 150mcg for many years .. then about 3yrs after i had last period it became a bit too much and needed reducing a little to 125mcg.

I now take 112.5,... 100mcg is definitely too little .. 125 may, or may not have been too much.... am observing results of 112.5 for a while longer before making my mind up .

tattybogle profile image
tattybogle in reply totattybogle

a VERY rough guestimate of final dose can be done on body weight... using 1.6mcg /Kg This is what the NICE(NHS) guidelines suggest ... so if your doctor thinks 87.5mcg is a high dose she must treat an awful lot of REALLY tiny people :)

saffy1ruby profile image
saffy1ruby

Thank you, I had symptoms for many years but GP kept saying TSH was in range. Menopause was when symptoms really became life changing and unbearable, I saw a private Dr about menopause symptoms and when she tested my TSH was 6 so she prescribed me levothyroxine for the first time. My mam and her sister went through the same and although I knew there was a link my GP refused to treat me. It was only when we got a new GP that she looked at all my information and prescribed me levo on NHS. My life before levo was so awful but I feel more positive now. Thank you

tattybogle profile image
tattybogle in reply tosaffy1ruby

:)

xx

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