Grateful for help with blood test results please - Thyroid UK

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Grateful for help with blood test results please

Elizabean profile image
18 Replies

Dear All, 

I apologise in advance for the length of this post. I have tried to include all the info that I see others being asked when they post their results. 

I would be really grateful for any assistance with my blood test results please. I am on T3 only. 

As well as any general help with interpreting these results, I would also be really grateful to know if my blood results indicate that I should try adding some T4 to my T3? Please see the background below for explanation behind this question.

Both of these blood tests were taken at 08.45am, 12.5 hours after my last dose of T3.

April 2022 

Serum total 25-OH vit D normal 93 nmol/L (50-125 nmol/L)

Serum folate  normal 14.4 ug/L (3.9 - 20 ug/L)

Serum vit B12 normal 562 ng/L (223 - 1132 ng/L)

Serum ferritin normal 54 ug/L (14 - 186 ug/L)

TSH 2.13 mu/L (0.3 - 5.50)

TPO Antibody < 25.0 iu/mL (normal low = 0.0; normal high = 33.9)

Serum C reactive protein normal  < 5 mg/L (no ref range given)

March 2022 

TSH 1.30 mu/L (0.3 - 5.50)

FT3  5.2 pmol/L (3.1 - 7.0)

FT4 6.9 pmol/L (11.5 - 22.7)

TPO Antibody < 25.0 iu/mL (normal low = 0.0; normal high = 33.9)

In case it would be helpful to see an overall picture, I have included some older blood results too. However, all of the below blood tests were all taken at around 3pm in the afternoon approximately 7 hours after my last dose of T3 (as I had not read the guidance on this forum at that point about the optimum time to have the bloods taken) 

September 2021

TSH 1.69 mu/L (0.3 - 5.50)

FT3  5.8 pmol/L (3.1 - 7.0)

FT4 7.7 pmol/L (11.5 - 22.7)

January 2021

TSH 1.02 mu/L (0.3 - 5.50)

FT3  6.6 pmol/L (3.1 - 7.0)

FT4 4.3 pmol/L (11.5 - 22.7)

November 2020

TSH 1.55 mu/L (0.3 - 5.50)

FT3  6.5 pmol/L (3.1 - 7.0)

FT4 6.3 pmol/L (11.5 - 22.7)

Supplements/vitamins

I supplement with various vitamins daily, including a B complex and vitamins D3 and C as well as zinc and selenium. Since I got the results from April 2022 I have also added in a daily B12 supplement.

Background

My 'main' diagnosis is CFS/ME which I have had for the last 21 years, mostly at the moderate level, though for the last two years at the severely affected level. My main symptoms are severe disabling fatigue and disabling cognitive symptoms.

In addition to CFS/ME I was also diagnosed with subclinical hypothyroidism by Dr Peatfield 11 years ago. I have been taking T3 for the last 11 years. My dose for the last 8 ish years has been 25 mcg daily split into two doses.

Even though I was never officially diagnosed (hypothyroid) on the NHS I am under an NHS endocrinologist due to a referral from my CFS consultant. The endo is aware that I buy my own T3 and checks my bloods every 6-12 months but she of course follows the NHS party line when interpreting the results. Because I have felt so unwell I have not been anywhere near as proactive as I should have been in looking at my blood results myself and seeing if my medication needs tweaking. I am here to try and change this.

Lastly I should say that a few years ago my endo started to say that my blood test results indicated that I should add some T4 to the T3 and she did prescribe the T4 for me. The T4 I was given was TEVA and when I did add it in I felt no benefit at all. So after 6 months or so I stopped taking the T4. Juts to be clear though, all of the above sets of blood results in this post are when I have been on T3 only. 

As stated above, as well as any general help with interpreting these results, I would also be really grateful to know if my blood results indicate that I should try adding in some T4 again? If so, this time I would try and get a different brand (hence my other recent post on here asking about which brands of T4 have been effective for other people).

Many thanks in advance for any help. I cant express just how grateful I am for this forum and for those that help so generously. Thank you. 

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Elizabean
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18 Replies
greygoose profile image
greygoose

I would also be really grateful to know if my blood results indicate that I should try adding in some T4 again

Blood tests can tell you a lot, but they can't tell you everything. Mainly, they tell you what is present in your blood, but they can't tell you how you feel - or how you should feel.

As you are not taking any T4, your FT4 is very low - although not as low as mine, which is zero! (Burnt out thyroid - Hashi's - T3 monotherapy) But, that does not automatically mean that you should take T4. You can only tell that from the way you feel. Have you always been on T3 only? Or did you start on levo and drop it because it didn't agree with you, like I did? Some people need a reasonable level of FT4 to feel well when taking T3, and some are happier without it. And a blood test cannot tell you which of those types of people you are.

Looking at your results, I would say you're under-medicated. Most hypos need their FT3 higher than that. But, how do you feel? If you don't feel good, I would say increase your T3 before trying to add in T4, 25 mcg is not a very high dose, and an increase might be all you need. :)

Elizabean profile image
Elizabean in reply to greygoose

Thank you so much for your very helpful reply. I really appreciate it.

From memory, Dr Peatifeld tried me on a few things before putting me on to T3. It was a long time ago (and many moons in terms of the thousands of things that I have tried over the years for my health) but I seem to remember that he tried me first on Nutri thyroid and then on Armour Thyroid. I got worse on both. I seem to remember that he came to the conclusion at some point that I was a poor converter and so I then went straight onto T3. I then stayed on T3 only for maybe around 8 years.

Then my NHS endo on the basis of my blood results suggested that I should add in T4. When I tried doing so I felt worse (and that was despite the fact that I started the T4 on a micro dose - which I have to do when I introduce anything new into my system - as I am highly highly sensitive to medication and also to some supplements and can typically feel worse on a lot of medications). So I eventually stopped trying to add in the T4 and just reverted back to T3 only.

I guess my only thought was what if the T4 didn't agree with me because it was a brand that didn't suit me (I have only ever been prescribed TEVA) and perhaps there is a chance that a different brand might suit me better. But equally it may be that no T4 will ever agree with me.

I really appreciate what you (and others) say here - that it might be worth increasing my dose of T3 first. I really like the simplicity of this option and that it might indeed be the answer. My only current challenge with that is a practical one - of how I get a consistent dose if I try to increase. I currently use Cynomel by Grossman and use a pill cutter to cut the 25 mcg tablet into two halves, as I split the dose into 12.5 mcg am and pm. It will be a challenge (perhaps an impossible one) to try and accurately further cut a 12.5mcg half of a tablet into halves, so that I can try increasing my dose by a further 6.25mcg. The pills are hard little blighters and don't lend themselves well to accurate cutting.

Not to mention the additional challenge that I am now on my last bottle of Cynomel and it is not currently possible to get any more, so I will be having to switch brands in the middle of all of this. The only other brand that I have found it realistic and manageable for me to get hold of (withough it taking an amount of work that I am not well enough to do) is Tyromel and I found that I felt rubbish on that and I couldn't find a dose of it that seemed to do the trick. it seems less than ideal that I will be trying to make this change whilst also changing the brand. But hey ho, I know that sourcing the meds that we need is a problem that we all have.

Apologies for my overly long message here (cognitive difficulties make it difficult for me to be succinct in writing). Sincere thanks again for your reply

greygoose profile image
greygoose in reply to Elizabean

You're very welcome. :)

Yes, that is a problem if you can only tolerate one brand and you can't get that brand! I take it you mean Cynomel from Mexico. I used to use that one, and there were frequant problems with supply. So, now I take Tiromel and, frankly, I don't find much difference between them. But, I'm a bit of a rhinocerus where brands are concerned. I think I've tried almost all brands of T3 and been OK on all of them. On the other hand, I've tried several brands of T4 and been horrible on all of them! So, I can't really help you where brands are concerned, I'm afraid. Except to say that as you are brand-sensitive, it might be worth trying a different brand of T4 to see if it was the Teva that didn't agree with you, as it disagrees with so many people. :)

Jaydee1507 profile image
Jaydee1507Administrator

I'm not an expert here but for interest I ran the numbers on your FT3 latest test (which was a while ago).

FT3: 5.2 pmol/l (Range 3.1 - 7) 53.85%

Your TSH seems to be climbing too. I'll let someone else advise if you need T3 or T4 but you need one or the other or both for sure!

While I'm here. Have you tried any dietary changes? Cutting out gluten helps many, sometimes dairy and also soy also need to be eliminated for best results fatigue wise.

Elizabean profile image
Elizabean in reply to Jaydee1507

Thanks so much for your reply and for the figures on where my FT3 falls in the range despite taking T3. And on your dietary question, yes I already eat gluten and dairy free and also don't eat soy. Gosh, its all so complicated trying to find the answers! Thanks again.

Jazzw profile image
Jazzw

When you take thyroid hormones, they replace the output of your own thyroid. They don’t supplement it or bolster it, they replace it.

Your thyroid isn’t bothering to make any T4 because it doesn’t need to, it’s getting T3 instead. But looking at your FT3 and TSH results, I’d say you might be on too low a dosage of T3.

Have you ever tried taking slightly more?

Elizabean profile image
Elizabean in reply to Jazzw

Thank you so much for your reply. Yes, I think the best starting point is probably for me to try increasing the T3 first. I have put more details about this in my fuller reply to greygoose above, but also wanted to thank you for your reply.

SlowDragon profile image
SlowDragonAdministrator

if you’re going to increase T3 ….increase by 1/4 tablet (6.25mcg) and the wait 6-8 weeks before testing again

In past when taking levothyroxine too …..

How much were you taking

Have you ever had high TPO antibodies in the past?

Have you had TG antibodies tested at all?

Perhaps might be good idea to get cortisol tested too using Blue horizon

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

important to stop vitamin B complex a week before test as contains biotin. Instead consider taking a separate methyl folate that week

jrbarnes profile image
jrbarnes

I'm not an expert on taking T3 only but I've tried it. I see a registered nurse for my hypo and she also has hypo. She told me that for several years she took T3 only but at some point she felt the need to add Levothyroxine. She now takes a full dose of Levothyroxine and 10mcg of T3. Ask your Dr to order the Total T3 in addition to FT3. If you're only dosing T3 then they should be ordering tests which will specifically check the total and free amounts of T3 in your body. It's an overlooked but valuable test and has been helpful to me when trying to determine what I should increase.

Elizabean profile image
Elizabean in reply to jrbarnes

Thank you so much for your reply. I really appreciate it.

I am embarrassed to say that I have never heard of total T3 as a test. I wonder if my NHS endo will agree to it. I have an appointment today and will ask.

Failing that, is it a test that one can get privately?

many thanks once again.

greygoose profile image
greygoose in reply to Elizabean

Actually, TT3 is a pretty useless test. There are two types of T3: bound and unbound. The body can only use unbound. The Free T3 test only tests the unbound, so that you know how much useable T3 you have. The Total T3 tests for both bound and unbound, so doesn't give you any clue how much T3 you have available for your body to use.

jrbarnes profile image
jrbarnes in reply to Elizabean

I'll send you a private message.

waveylines profile image
waveylines

i too was diagnosed with CFs/ME about 20years ago. Eventuallysoke nright spark fimally agreed that the blood trst results imdicated hypothyroidism amd atarted me on treatment. It took a nimber of uears to fime the best amd most optimal treatment for me, Another aspect was vit D&Bqw deficimecy, amc them gluten intoelrance....... With these factors addressed finally my mdt worked really effectively and I was able to reduce the dose a tadge.

Am saying all of this as its mich about tracking down the co factors and addressing those deficencies as about the optimally dose and type of thyroid meds for you. Looking at your blood test results, albeit they are not recent Id say you are under medicated. In your shoes Id be increasing the T3 level first. optomise that.......if you still feel poorly then maybe that is the time to think of adding a little bit of levo in. Clearly Dr P thought youd be better off on T3 only.... maybe you are very poor converter.

Elizabean profile image
Elizabean in reply to waveylines

Thanks so much for your reply. I am sorry to hear you also have CFS/ME.

This is definitely a very complex thing and I understand what you say about needing to address all of the other cofactors too. If you are comfortable sharing, once you had done all of that in your case (addressed the deficiencies and gluten intolerance etc), which thyroid meds ended up working for you? many thanks in advance.

waveylines profile image
waveylines in reply to Elizabean

Everyone is different but my preference is ndt. Currently on Armour. I dont believe I have CFS/ME. I think I was incorrectly diagnosed by the NHS Consultant.....he refused to back track when I wrote to him several years later about my recovery. He claimed my hypothyroidism was a consequence. So not true!! My problems were an underactive thyroid, B12 deficiency and gluten intolerance. The source of this is that I developed Vitiligo in my mid teens. At the time the links across with Vitiligo were not made to other autoimmune conditions. They have now shown to be connected. I am miles better since this was all addressed....in the end but a long road. But I have to be honest I have had to proactively search out the causes, then search for a good doctor. The GP was of no help....except for writing referrals when requested. 🤣ME/CFS still seems to be a long way of being understood so I really hope you find those sources for you....horrible to have to keep searching when you feel soooo poorly. Big hugs xx

Elizabean profile image
Elizabean

Gosh, very interesting. Thank you for sharing. In my case I went been down the road of functional medicine practitioners and functional medicine tests with full enthusiasm for about 12 years and, to be honest, it all added up to nothing. The tests would find things that I would try to address but it never added up to actual or sustained improvement. Its wonderful to hear that you found your way out. Would you be comfortable sharing which doctor you found helpful? PM me if you would prefer to keep this private. Many thanks again.

Elizabean profile image
Elizabean

Hi All, I spoke to the endo consultant today and I got my most recent set of blood tests results, which were taken last week. Could someone please advise me where it is best to post these latest results, in relation to the above post? Should I edit my original post above and write them there? if I do that, then I assume that anyone that originally replied to me won't see them and so won't be invited to comment. Or is it best for me to write them here as a separate entry, like this message here?

I ask because I would be grateful for any advice based off including these latest results.

Many thanks in advance.

Jaydee1507 profile image
Jaydee1507Administrator

If it were me I'd start a new post and link this post into it.

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