Very confused by blood test results - grateful for help please

[Elizabean]

Hi All,

Further to my previous posts, I continue to be very unwell, with my main symptoms being severe fatigue and disabling cognitive symptoms.

As I have mentioned in previous posts, I do also have a diagnosis of CFS/ME (for what that is worth) which has fluctuated in severity for the last 22 years between moderate and severe. I have been mostly housebound for the last 22 years.

I am on T3 only and following advice from others in response to a previous post with previous blood tests, I gradually increased my T3 from 25mcg per day (split into two doses) to 37.5 mcg per day. Actually, at one point I increased higher than that - to 43.75mcg per day, but I felt very unwell on that, so I reduced back down to 37.5 mcg per day some time ago. I still split my T3 into two doses per day.

I am incredibly confused by my more recent blood test results. I had my bloods tested in June 2023 and the results were so different to the pattern of my previous results that I actually thought that they (my local NHS hospital) must have mixed up my results with someone else's. Both my TSH and my FT4 were higher than previously - significantly higher in the case of my TSH - and I couldn't understand why. I was also confused by my FT4 being higher than it has ever been in previous results, especially given I don't take any T4.

Given my doubts as to whether the June 2023 results were correct, I paid to have my thyroid profile tested at Monitor My Health last week. I have included those results below. They clearly show that my results in June 2023 weren't a mistake or someone else's and according to MMH's reference range my TSH is now out of range. But I just cant understand why both my TSH and FT4 have raised, given the change that I have made is a gradual increase in my T3 monotherapy?

I am wondering whether one possible cause/contributor might be that the batch of T3 that I have been taking for the last little while is 'off' in some way. I am taking Uni-Pharma T3 bought privately.

I have set out all blood tests below.

I am on a gluten, dairy and soy free diet.

In response to a question below I have set out in detail below which supplements I take daily.

I do not take any other medication.

I have my first ever consultation with the prescriber at Roseway Labs tomorrow. I am having this consultation for two reasons. Firstly, just in case the batch of Uni-Pharma T3 that I am using is the culprit, I am going to try a different brand (Thybon Henning) and see if that might make a difference. Also I wanted to establish a connection with Roseway Labs as a reliable source of T3, as I am fed up with the insecurity of buying T3 online and worrying if and when the source might dry up!

I would be very grateful indeed for any advice please on what I should do from here in trying to feel better and improve. I really am feeling unwell.

Thank you so much in advance to you amazing people on here for your help.

26 July 2023

TSH high 4.55 mu/L (0.27 - 4.2)

FT3 4 pmol/L (3.1 - 6.8)

FT4 13.6 pmol/L (12 - 22)

10 July 2023

Serum total 25-OH vit D normal 120 nmol/L (50-125 nmol/L)

Serum folate high >20.0 ug/L (3.9 - 20 ug/L)

Serum vit B12 normal 870 ng/L (223 - 1132 ng/L)

Serum ferritin normal 32 ug/L (14 - 186 ug/L)

Serum Iron level 21 umol/L (11.0 - 30.0 umol/L)

Serum TIBC 61 umol/L (45.0 - 72.0 umol/L)

Percentage iron saturation 34% (no ref range)

14 June 2023

TSH 4.51 mu/L (0.3 - 5.50)

FT3 4.3 pmol/L (3.1 - 7.0)

FT4 14.4 pmol/L (11.5 - 22.7)

March 2023 (only TSH was tested)

TSH 1.16 mu/L (0.3 - 5.50)

September 2022

TSH 1.98 mu/L (0.3 - 5.50)

FT3 5.1 pmol/L (3.1 - 7.0)

FT4 5.5 pmol/L (11.5 - 22.7)

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)

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)

[SlowDragon Administrator]

Why are you only on T3

Which brands of levothyroxine have you tried

Thybon Henning T3 is lactose free so may suit you better

Being On just T3 is the last resort

Do you split your T3 as 2 or 3 doses

Many people do well on mainly levothyroxine plus small doses of T3

If ONLY taking T3 then many people would find they need more than 40mcg per day

[MrPeaPaw in reply to SlowDragon]

Why do you keep saying T3 is "a last resort"? I will counter by saying it should be the FIRST resort.

I take T3 only, at 35 mcg per day all at once. I do not split doses. 40 mcg was too much as I found out when trying to increase to the "recommended" amount.

[FancyPants54 in reply to MrPeaPaw]

Because T3 is difficult to get right when taking just T3. Obviously it was just what you needed. But many can't get it right. The highs and lows come fast with synthetic T3 and so getting the right time and the right dose is hard. I have tried going T3 only twice and I felt terrible. People who have been ill for a long time and are very depleted because of it, often think T3 will be their holy grail and so they are determined to take only T3 without perhaps trying other things like combo or increasing doses etc.

And it's a last resort because it's very hard to get on the NHS and therefore involves messing about and money.

[MrPeaPaw in reply to FancyPants54]

Very much agree that being ill for a long time (like I was)requires a slow and patient titration up just like any other choice. I often wonder if I gave levo or Armour a fair shake, as my treatment was poorly handled for about two years. That's the fault of the doctor, not me. That was before I read this forum.

I pay for liothyronine myself and it's about $120 for a ninety day supply. I take it in one dose right before bed.

[Elizabean in reply to SlowDragon]

Hi Slow Dragon, thanks again for your reply.

I am on T3 only as I have not had a good experience with either adding in any T4 nor when I took any products containing T4 such as Armour. It was Dr Peatfield that originally diagnosed me and in time he came to the conclusion that I was a poor converter, and he put me on T3 only.

I split my T3 into two doses.

The only brand of Levo that I have tried is Teva, which I know many don't do well on.

[SlowDragon Administrator in reply to Elizabean]

only change one thing at a time

So first change to Thybon Henning T3

Waiting 6-8 weeks to retest

Then if not going to increase T3 look at trying a small dose levothyroxine

Presumably you keep all supplements well away from taking T3

Have you added or changed any supplements recently

I would suggest trying Aristo (Vencamil ) levothyroxine

They only currently have 100mcg in U.K.

you could cut into 1/4 to try adding 25mcg

Vencamil is lactose and mannitol free

[Elizabean in reply to SlowDragon]

Hi Slow Dragon, thanks for your advice to only change one thing at a time. I was prescribed the Thybon Henning today by Roseway prescriber and so I can start with that change soon (i.e change of brand of my T3).

You provided such helpful info below about raising ferritin levels. Just wondering if you think it is ok to work on this change at the same time as the change of brand of T3? My strategy for trying to raise my ferritin is going to be liver (varying between lambs and chicken liver) approx three times a week. Having read one of the links you included below, I was also thinking of adding in the Berserker Dessicated Beef Liver capsules that one member mentioned having success with.

Lastly, you asked if I keep all supplements away from taking T3. I must confess that I don't. I thought that was only relevant if taking T4? I'm guessing that this is wrong and that some supplements interact with T3?

Thank you

[SlowDragon Administrator in reply to Elizabean]

All supplements at least 2 hours away

Iron, magnesium, vitamin D tablets 4 hours away

Suggest you look at increasing iron rich foods….red meat daily …..and liver advice is generally once a week as it’s high in vitamin A

[Elizabean in reply to SlowDragon]

Ah, I have never eaten red meat (other than organ meats) in my life to be honest. That would be quite a change for me. Time to try and psych myself up to a big change!

[waveylines in reply to Elizabean]

Hello Dr Peatfield is a renowned thyroid specialist so it sounds like you came to T3 because nothing else worked and you are a very poor converter. Have you tried contacting Paul Robinson (Facebook)? He set up a T3 only group and am wondering if you might find that helpful.I do know that in the end Paul added a small amount of levo but found he could tolerate very little.

Also for someone onT3, only your ft4 result is surprising.

I don't know if Shaws can add further advice. She is on T3 only.

I don't have any experience of taking T3 only I'm afraid. Armour did work for me. I too was diagnosed with CFS/ME many years ago but suspect it was really missed Hypothyroidism.... as that diagnosis followed two years later and I recovered once appropriately addressed.... Dr Skinner was the one who addressed the thyroid meds as GP was basically incompetent. ME Consultant wouldn't drop the CFS/ME diagnosis though despite my recovery on thyroid meds.

[Elizabean in reply to waveylines]

Thanks for your reply. I haven't had contact with Paul Robinson and that option might be one to explore, so thank you.

Yes, as you say, my FT4 level is a surprise, given I am on T3 monotherapy. Also given that all previous results prior to June 2023 had a low FT4, which I would expect.

It is great to hear that you have recovered and made it out of a misdiagnosis from the CFS/ME black hole! Cheering news indeed!

[SlowDragon Administrator]

What other medications are you taking

What vitamin supplements

[Elizabean in reply to SlowDragon]

Hi SlowDragon,

Thank you so much for your reply.

I am not taking any other medications. I was previously taking Cerazette (the progesterone only contraceptive pill) for endometriosis. but I stopped taking that recently. For approximately six ish weeks recently I was also taking ibuprifen daily for the severe pain of my endometriosis, but, again, I am no longer taking that (as I am now using natural anti-inflammatories such as high dose turmeric).

Supplement wise I take the following daily:

1000mg high quality liposomal vitamin C called Altrient C,

liposomal vitamin d3/K2 by Biotics Research,

vitamin B Complex,

a separate vit B12 complex called Super B12 Complex 1000 mcg by Igennus

zinc complex 25mg by Igennus

Triple Magnesium Complex by Igennus

Selenium 200 mcg by Moss Nutrition

2000mg Pharmepa Restore (pure EPA Omega 3)

last week I have added in Boswellia AKBA by Pure Encapsulations (Boswellia serrata as an anti imflammatory for my endometriosis)

[SlowDragon Administrator in reply to Elizabean]

the progesterone only contraceptive pill) for endometriosis. but I stopped taking that recently.

I wonder if this has affected thyroid levels

[Elizabean in reply to SlowDragon]

I wonder too.

The other alternative as to what might have caused my thyroid levels to differ so much form their previous pattern might possibly be due to the ibuprufen. I started to take 400 to 800g per day every day for around 6 or 8 weeks around that time and i have been looking into this today and apparently ibuprufen lowers ferritin. This, in turn, might possibly have then had a knock on effect on my thyroid and caused the change in pattern of my thyroid levels. Just a guess.

[SlowDragon Administrator in reply to Elizabean]

Sounds highly plausible

[MrPeaPaw]

My TSH level went from below 1 to around 5 the last time I checked. I don't think blood tests are very relevant when on T3 only and I pay attention to how I feel and clinical signs like BP, RHR, O2 sats, body temperature.

[Elizabean in reply to MrPeaPaw]

Hi MrPeaPaw,

Thanks so much for your reply. That is really helpful to know, thank you.

Yes ultimately there is no question that the only thing I am concerned with is how I feel. But the problem is that I have felt unwell for 22 years! I have never found anything that has helped significantly and I remain mostly housebound and unable to work for the last 20 years. I do also have CFS/ME, which is the main culprit in the severity of my health, but I have been hoping that optimising my 'thyroid situation' (in terms of getting the right medication or combo of medication and at the right dose) might improve things. However, so far, tweaking my thyroid medication never has resulted in an improvement (or even a change, other than one for the worse) in how I feel. It is only for that reason that I even consider the blood test results - as my own body is never giving me the feedback of an improvement! And whilst the blood test results in themselves are useless in comparison to how one feels, I am still confused why such a change in my TSH and an increase in my T4 for the first time in a decade. But what you say about your TSH results showing a large increase for no reason is reassuring to know, so thank you very much.

[JAmanda in reply to Elizabean]

They really are strange results aren’t they - almost like your thyroid is actually trying to do some work here - maybe you need to help it with some t4 along with your t3? I also agree though it could be that your online bought meds aren’t working.

I tried t3 only but found a mix of t4 and t3 way easier to manage - but it’s all trial and error.

[Elizabean in reply to JAmanda]

Hi JAmanda, thanks so much for your reply. Yes, I'm glad you said that as it is a possible alternative way of looking at things - that my thyroid is trying to work!

I will definitely consider adding in some T4 once I have tried some other tweaks first if those don't prove fruitful.

Very interesting that you say that a combo of T3 and T4 is easier to manage. I would be a BIG fan of anything easier at this point! I feel like you have to have a brain the size of a planet to negotiate all that is involved in getting the thyroid meds right!

[JAmanda in reply to Elizabean]

I think if I were you with those results I’d be adding in some Levo.

[Elizabean in reply to JAmanda]

Thank you.

[tattybogle in reply to Elizabean]

The increase in T4 seems quite logical to me Elizabean (unless i'm missing something that's obvious to everyone else and not me ...which is entirely possible)

So , no idea why the fT3 went down .. could be bad lot of T3 or some other interaction with something else going on, but .....

i'm thinking that as a result of the lower fT3 levels, your TSH went up significantly .....

and as TSH stimulates the thyroid to try to make more T4

then (assuming you have a thyroid, and it is capable of working even a little bit) ,,, then if the thyroid gets enough TSH.... it will make some more T4.

usually when people are on adequate dose of T3, it will take the TSH low enough that the thyroid is not even being asked to try to make any T4 ..... but, for whatever reason, your TSH is high enough that your thyroid is currently being asked to try make some T4 and so it is doing it's best to oblige ..... obviously it's not doing wonderfully very well at it , as your T4 level is still 'relatively pants' ... but that's not a surprise .. if your thyroid was capable of making 'enough' T4 you wouldn't have ended up needing to take thyroid hormone replacement.

[Elizabean in reply to tattybogle]

Thank you so much Tattybogle. That makes so much sense! Out of interest, what would you be inclined to think the solution is please?

[MrPeaPaw]

Elizabeth, did T3 help with CFS/ME symptoms?

I can certainly sympathize with your difficulties having been unwell for years myself (I'm well now). Wish I could help more.

[Elizabean in reply to MrPeaPaw]

Hi MrPeaPaw,

Thanks for your message. I can't honestly say that the T3 has helped. My main CFS/ME symptoms have always been debilitating fatigue and very bad cognitive symptoms and nothing has really helped, other than pacing and keeping my activity level absurdly low. I don't know if there is something that some people can have which stops their body being able to benefit from the T3?

[MrPeaPaw in reply to Elizabean]

Your last sentence gave me a thought: some people here take supra-physiological doses of T3 to overcome hormone resistance. If that was you, you're not alone.

[Elizabean in reply to MrPeaPaw]

Hi MrPeaPaw,

Thanks for your message. I'm not sure what supra-physiological doses means or what that would involve in practice. Is that something that you have come across on this forum that you might be able to point me in the direction of please? Thank you.

[MrPeaPaw in reply to Elizabean]

Some people need atypically large amounts of T3 to get sufficient T3 to the cells where it's needed. This is because of some cellular resistance to T3 and the large amounts of T3 is needed to "flood' the receptors on the cells that take in the T3. There's a person here who posts about this. My knowledge is limited.

[Elizabean in reply to MrPeaPaw]

Thanks MrPeaPaw. I’ll look into it.

[SlowDragon Administrator]

Serum ferritin normal 32 ug/L (14 - 186 ug/L)

Ferritin is deficient which also suggests you’re currently not on high enough dose T3

Look at increasing iron rich foods

Aiming for ferritin at least over 70

Despite negative TPO antibodies, you presumably have autoimmune thyroid disease, especially as you have endometriosis

[Elizabean in reply to SlowDragon]

Hi Slow Dragon,

Thanks again for your reply.

Ah yes, ferritin, that old nuisance! I once spent about three years almost exclusively focusing on trying to raise my ferritin (which always used to be in the teens). I think the highest I have aver managed to get it is in the 40s. I don't know why. Perhaps because I was brought up vegetarian from birth (I am absolutely not vegetarian any longer, but admittedly havent really eaten red meat)

In any case I have recently started to add in three ish servings of liver per week. So hopefully that might help?

[SlowDragon Administrator in reply to Elizabean]

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Medichecks iron panel test

medichecks.com/products/iro...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Posts discussing Three Arrows as very effective supplement

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Iron patches

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

Ferritin range on Medichecks

healthunlocked.com/thyroidu...

Inflammation affecting ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

[Elizabean in reply to SlowDragon]

Wow SlowDragon, thank you so much for this. It is so incredibly helpful.

[Litatamon in reply to Elizabean]

There is a staple in Costa Rica called the Carao plant. It is a blood builder that raises levels. I know someone who was always so low in iron that she had pica as a child. She tried everything to raise it. Nothing worked, this did. I am sure the cost is astronomical for shipping to the UK. But here is a link to one company who manufactures it, just in case -

tropicalhealthfoods.com/store/

They have a separate website for testimonials, due to not making health claims.

Note some feel it smells and tastes awful. I do not.

All the best.

[Elizabean in reply to Litatamon]

Hi Litatamon, thank you so much for this. I will look into it!

[SlowDragon Administrator]

We have a number of members who have been on T3 only and then found after a while/several years they can/need addition of Levothyroxine added back in

Liquid levothyroxine is another option, though expensive and currently difficult to get

[Elizabean in reply to SlowDragon]

I am definitely open to trying again to add in some form of T4. Like you said, I need to just make one change at a time, but if those other changes don't bear fruit then T4 experimentation it is!

[Fefe09]

I don’t know the answers I just want to let you know you’re not alone. I’ve been on thyroid med for over 30 years. I have been so sick I can’t even leave the house. I pray some days for God to please take me. I love life but I’m in bed for about 20 hours a day. I also have chronic fatigue i tested postive for the Epstein Barr virus as a teen Ager. I have other problems such as nausea and severe dizziness and chronic pain. The doctors think I’m crazy cause I’ve seen every kind of doctor and they write in my report oh she has anxiety blah blah blah. Anyway I just wanted to let you know you’re not alone. I pray you find the help you need. Wish I could.