Blood tests are back! - Total confusion!!! - Thyroid UK

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Blood tests are back! - Total confusion!!!

OudMood profile image

Some test results are back! - But I’m not sure if any are interesting at all!

Before I start.. I am NOT on any Thyroid medication.

Reference:

⬆️ = Has gone up since previous test

⬇️ = Has gone down since previous test

❗️ = outside of range

Vit D 71 (30-200) ⬆️- taking 4,000iu a day

Serum B12 681 (191 - 663) ⬆️❗️

Folate 8.7 (3.9 - 26.8) ⬆️ supplementing

Ferritin 66.7 (30 - 400) ⬆️❗️

Total Cholesterol 4.8 (1.5 - 5.2) ⬇️

Triglycerides 1.26 (0 - 2.26) ⬇️

HDL 0.97 (1.15-1.68) ⬇️❗️

LDL 3.3 (0 - 3) ⬆️❗️

Non-HDL 3.8 (none) ⬇️

Alkaline phosphate 63 (30 - 130) ⬇️

Inorganic phosphate 1.89 (0.8 - 1.5) ⬆️❗️

ALT 10 (0 - 33) ⬆️

Differential White cell count ⬆️ (overall all values have increased Monocytes and promyelocyte last number or top range)

Hba1c 45 (0-41) ⬇️⬇️⬇️✅

Platelet 416 (150 - 400) ⬆️❗️

Plasma ACTH “No Result”

NT-proBNP 17 (0 - 400)

Cortisol CGH 166 (171 - 536) ❗️

TSH 4.94 (0.27 - 4.2) ⬇️❗️

FT4 15.8 (12 - 22) ⬆️

FT3 - waiting ?

TPO - waiting

TG - waiting

I’ll be updating the post as new results come in..

But these are throwing me off.. it’s like everything is not where I expected it to be??

My TSH has decreased and FT4 increased ??🤦🏼‍♀️

I’m starting to feel like I’m imagining things I swear.

I also feel like the GP will think I’m lying 😥😥😥

(The only thing I could think of that may have helped to lower TSH is… I do cupping and in the past 6 weeks I’ve done treatment on myself twice and i just realised the points I did are for the thyroid.. and that explains why they were extremely dark purple 🙊 - I kinda wish I hadn’t.. so the GP could have seen the bad blood test results 😂)

The cholesterol thing is a bit weird.. I know it’s possibly a hypo symptom.. but the overall level has gone down (good) but the HDL has worsened and it’s weird because I eat a lot of good fat and not so much rubbish as I’m doing Keto. (I eat lots of avocados, coconut oil, peanut/almond butter, salmon, mackerel, eggs etc)

I’m also confused as to why my B12 is elevated (it was historically 781, 815, 556 and now 681 - Same ref ranges).

Also elevated platelets and white cells may indicate autoimmune response..

Do the above tell you anything? 🤔

27 Replies

Really need those Ft3 & Ft4 results.... Hypothyroidism is called the great mimicker. When the thyroid hormones are out if whack it can cause problems all over the shop. Some of these are common ones as per on thyroid uk website and others unique to you. Commonly it can raise cholesterol, blood pressure and lower iron. Other vits maybe out like vit b12 and vit D. These will need supplementing. Once you are optimally treated you may well find these will settle but some of us need to keep supplementing (myself included). Defo start reading up as much as possible as GPs knowledge is extremely low.

OudMood profile image
OudMood in reply to waveylines

Thank you.

Where would you recommend to read up?

Any website in particular?

I’m discovering this whole new world all of a sudden 😅😅

The FT4 is 15.8 (12-22)

FT3 is not back yet… (I’m praying the lab will do it as it’s been requested!).

Also P.S. I’m not on medication for the Thyroid.

waveylines profile image
waveylines in reply to OudMood

If you look on Thyroid Uk that have a book list.....Your Ft4 is not particularly low. A GP would not treat with that level. The problem with ranges (figures in bracket) is that it is wide. Everyone has their own preferred level.....trouble is no one tests thyroid when you are well & feeling fine.

Subject to your Ft3 (and if its ur the GP who has sent blood tests off be prepared any request is turned down by the lab if other results look fine) it might be best to look at your vits & minerals and support so optimal. This will give your thyroid the best chance of optimal performance.

Cholesterol levels have little to do with what you eat - and certainly nothing to do with your fat intake! Fat and cholesterol are two entirely different substances.

Cholesterol is made in the liver, because your body needs it. The liver tries to keep the level constant by making more when you ingest less, and less when you ingest more. However, when T3 is low, the body cannot process cholesterol correctly, and it tends to build up in the blood. That is not anything to worry about, however. High cholesterol is a symptom, not a disease.

You are under-medicated, and your TSH is too high, and your FT4 too low. Guessing that your FT3 will also be low.

Unlikely that the drop in TSH has anything to do with cupping. It follows the levels of the thyroid hormones. :)

OudMood profile image
OudMood in reply to greygoose

Thanks!

Well well… I had honestly no clue how cholesterol is made.. just been always told is related to what fat I eat and how much of it.

It’s weird that when you start researching nothing is how you’ve been told.

Just FYI I’m not medicated at all.

Docs haven’t prescribed anything to me…yet!😵‍💫

greygoose profile image
greygoose in reply to OudMood

lol As a general rule, doctors know nothing about nutrition! They just don't do it in med school. I'm sure they believe that fat somehow turns into cholesterol during digestion, or something. But, it doesn't. Fat isn't the enemy, either. The body needs fat. Going on a totally fat-free diet - as a lot of doctors recommend - will actually kill you! They'll also tell you that cholesterol can't be too low - doctors have actually said that to me because I have naturally low cholesterol, and taking T3 makes it even lower - it was practically zero at one point! And they said that despite the lab having put a warning note on my results to say I was in danger of a heart attack - yes, folks, high cholesterol won't give you a heart attack but low cholesterol will! The body really, really needs cholesterol to make cells walls and brains and things. But, doctors don't know that.

My comment about your FT4 was made under the misapprehension that you were taking levo. It would be too low for someone on levo, but for someone not on levo it is euthyroid.

Your TSH, on the other hand, it much too high - not euthyroid at all. A euthyroid TSH is around 1, never more than 2, and at 3 you are hypo. But, doctors don't know that either, and have been 'instructed' not to diagnose until the TSH is over ten! So, I'm guessing that your FT3 is probably quite low to have a TSH that high, and your thyroid is really struggling to make the adequate amount of T4. You are hypo, but the sad thing is, the NHS won't recognise the fact.

OudMood profile image
OudMood in reply to greygoose

Yes, docs deffo have no clue of nutrition…

And to be honest I never thought of how cholesterol appears… and if I had to explain it.. don’t know 🤣 probably would have said some abomination! 😂

My GP (which I haven’t seen since the pandemic 😞) is actually quite good.. she recommended Low carb and Keto to me, and that’s unusual! (And her low carb is actual low carb!)

So see my Thyroid is really confusing me..

If you see one of my first posts I have gone through the symptoms that I’ve been having and my TSH was 5.63 in March, so I had assumed it has gone up now…

No FT3 or FT4 was tested.

The GP that I spoke to for the tests, did already agree I’m Subclinical. So I guess there’s that.

I’ll probably retest privately in a month or two just to see…

I had some TPOab before, although they weren’t above the limit, and with my T1 diabetes it indicates that It’s Hashimoto..

I’m awaiting the TPO and TG results hoping the lab didn’t refuse to do them like.. the FT3??

On my advantage I have a Endo that I’ll see in October, so if GP refuses treatment I have a further recourse on my hands. 🤞

But yeah.. I’m so confused why I literally have every symptom in the book but FT4 is still low?! 😭😵‍💫

I’m wondering if this could by cyclical? As I’ve heard that Hashimoto has flare ups, so possibly my TSH increases during flare ups and then calms down a bit and it restarts? Is this possible? 🤔

I was taking Biotin but I DID stop 7-8 days before the test, but maybe it was still in my system somehow? 😭

I’ll add the previous results for comparison too..

greygoose profile image
greygoose in reply to OudMood

(And her low carb is actual low carb!)

You don't want to go too low carb or it will negatively affect your conversion of T4 to T3 - bet she didn't know that!

I had some TPOab before, although they weren’t above the limit, and with my T1 diabetes it indicates that It’s Hashimoto..

TPOab only indicates Hashi's if it is over-range. Everybody has some antibodies.

Trouble is, antibodies fluctuate all the time, so one negative test isn't conclusive. Plus, the NHS only tests for TPOab, but there are also TgAB that can indicate Hashi's if very high. And they can be very high when TPOab is negative. My TPOab were only just over-range, but my TgAB were in the thousands.

Also, not every Hashi's sufferer even has over-range antibodies - 20% don't, and are diagnosed by ultrasound when the damage is so bad it becomes visable. So, it is perfectly possible that you do have Hashi's.

But yeah.. I’m so confused why I literally have every symptom in the book but FT4 is still low?!

I'm confused about that sentence! lol Do you mean 'but FT4 still isn't low'? But, it's not T4 that causes symptoms. As I said, your FT3 is probably low and it's low T3 that causes symptoms.

I’m wondering if this could by cyclical? As I’ve heard that Hashimoto has flare ups, so possibly my TSH increases during flare ups and then calms down a bit and it restarts? Is this possible?

No, Hashi's doesn't have 'flare ups', Hashi's has flares. Quite stupid calling it that, actually, because it confuses people. I prefer to call them 'Hashi's 'hyper' swings' because during a 'flare', the FT4 and FT3 will suddenly rise sharply, and the TSH therefore drop very low.

But, levels can jump about all the time with Hashi's, that's quite usual.

I was taking Biotin but I DID stop 7-8 days before the test, but maybe it was still in my system somehow?

I doubt you take a high enough dose for it to still be in your system after 8 days, so don't worry about that.

OudMood profile image
OudMood in reply to greygoose

Thank you!

I need to know how you guys manage to put stuff in bold! It doesn’t allow me on my phone! 😂

Low carb: Soooooo see we have a problem. 😂 if I don’t do low carb I CANNOT manage my blood sugars. It is literally impossible (even with low carb it’s really really hard, I’m severely insulin resistant and it’s a mess). I’m on an insulin pump and have had it since 2005.. so really know my stuff (kinda) and treat it myself.. so I think the conversion will have to suffer 😂🙊

I always said it, what is good for my diabetes is bad for my PCOS. What is good for my PCOS is not so great for my diabetes. Now when we add the thyroid into the mix I should be eating air and water! 😂😂😂

Antibodies:

I didn’t realise that everyone had SOME antibodies..

GP requested TPO and TG.. do you think the lab would ignore it like the FT3? 🤔

Never tested TG so it could very well be the case.. that it’s high.

FT4: yes! 😂

I’m getting confused myself as I keep reading about medicated people haha.

Yes I meant instead of going out of range it’s gone up! From 14 to 15! 🤦🏼‍♀️🤦🏼‍♀️

Hashi Flare:

Ok, I got this completely wrong. Thanks.

Purely speculative.. this *could* make some sense if FT4 has increased a bit and TSH has fallen..

But I doubt my small difference is what is defined by “sharply”.

Obviously I’m not mad that I want to be unwell. I’m just tired of feeling unwell and I want to put a label on it and get better.

Once diagnosed, it’s easier to go from there. Definitely don’t want to be labelled an hypochondriac.

The one thing I should have mentioned that I was thinking of that I know can also lower TSH for Hashi is gluten.

As mentioned about 6-7 weeks ago I have restarted my Keto diet and I do not eat gluten almost at all.

There may be the occasional food but the main which comes from grains and wheat.. has been cut off.

Sugar has also been cut off by about 95%.

(I need glucose at times if blood sugar is dropping).

And I have noticed a huge change in how I feel since cutting carbs.. excruciating pain in my legs has disappeared for example (I couldn’t walk more than 5 mins and even when stopping the pain would linger. It got to the point that if I had to push through the pain to walk to work from my car, the tibialis muscles and others would go completely numb for hours!) the other day I walked for 1 hour, about 3miles and after a while I realised… I have no pain!!!

Lol side story.

Ps I’m only 28!!! 😢

If I request a scan of my Thyroid, do you think the GP would object?

Is there a way to make them more prone to accept?

I’m thinking to really explain that I still suspect Hashi despite everything and maybe to check if any damage to the Thyroid can be seen… also is that X-rays? Ct scan? MRI? 🤔

helvella profile image
helvellaAdministrator in reply to OudMood

Yes it does!

helvella profile image
helvellaAdministrator in reply to helvella

If you are doing a reply, select the text and click on the B along the bottom of the text box.

😀

OudMood profile image
OudMood in reply to helvella

What do you refer to? 😅

My post is too long..

Or are you just teasing me that I can’t put stuff in bold? 😂

helvella profile image
helvellaAdministrator in reply to OudMood

Allow you to use bold text from a phone.

OudMood profile image
OudMood in reply to helvella

Haha 😂!

Not sure how to with my iPhone! 😵‍💫

helvella profile image
helvellaAdministrator in reply to OudMood

Here is what Apple say:

support.apple.com/en-gb/gui...

greygoose profile image
greygoose in reply to OudMood

GP requested TPO and TG.. do you think the lab would ignore it like the FT3?

If the TPOab is in-range, they probably will ignore it, yes.

Purely speculative.. this *could* make some sense if FT4 has increased a bit and TSH has fallen..

But I doubt my small difference is what is defined by “sharply”.

I don't think so, no. :)

Obviously I’m not mad that I want to be unwell. I’m just tired of feeling unwell and I want to put a label on it and get better.

Of course you don't want to be unwell. You are unwell and want to know why, that's a totally different thing. And, it's such a relief to be able to put a name to it.

The one thing I should have mentioned that I was thinking of that I know can also lower TSH for Hashi is gluten.

Really? Are you sure about that? Don't think it ever had that effect on me, and I eat a lot of gluten!

If I request a scan of my Thyroid, do you think the GP would object?

Is there a way to make them more prone to accept?

I have no idea. It depends on your doctor, perhaps. I live in France, and here it's routine to scan the thyroid when diagnosing. It's not routine with the NHS.

But, it's the same type of scan you have when pregnant, so see how the baby is developing. :)

OudMood profile image
OudMood in reply to greygoose

Thank you!

Yes! Putting a name to something that makes you unwell it’s so relieving and helpful!

Well it seems like I’ll have to invest in the the private tests which I was really hoping to avoid to be honest 😢

I already self funding a lot of stuff and money is on the tighter end right now…

It’s kind of annoying that a Lab can just override what a doctor requests!

He even wrote about the Hypothyroidism 🤦🏼‍♀️ which some users said it helped to test those values..

I’ve read that not for everyone but for many with Hashimoto, removing gluten from the diet (even without suffering from coeliac disorder) can result in lower levels of antibodies and I believe TSH!

Yes, that sounds like ultrasound scan! Will see if they would consider it.

Does anyone know if doing test in an hospital lab would lead to less “Lab” decisions to ignore testing? 🤔

Over GP labs…?

greygoose profile image
greygoose in reply to OudMood

Well it seems like I’ll have to invest in the the private tests which I was really hoping to avoid to be honest 😢

So many people in the UK have to end up doing private labs. It's a really bad situtation.

It’s kind of annoying that a Lab can just override what a doctor requests!

It certainly is! Wouldn't happen in France. Doctors are not averse to going on strike, here, and taking to the streets to protest. They did it about 15 years ago when the Powers That Be wanted to base the health system on the NHS. The doctors weren't having any of that, thank you very much!

I’ve read that not for everyone but for many with Hashimoto, removing gluten from the diet (even without suffering from coeliac disorder) can result in lower levels of antibodies and I believe TSH!

A lot of Hashi's people are gluten-sensitive so removing it from the diet helps with a lot of symptoms. Whether or not it reduces antibodies is debatable. And, even if it did, you'd still have Hashi's. And, I'm not convinced that lowering antibodies is even a desirable thing to do. They have their job to do.

Lowering TSH is certainly not desirable unless it also raises FT4/3. Most people are under-medicated, anyway, and if the TSH was lowered independantly of the Frees, it would be even harder to get enough thyroid hormone prescribed, because doctors tend to only look at the TSH.

Does anyone know if doing test in an hospital lab would lead to less “Lab” decisions to ignore testing?

Possibly not.

OudMood profile image
OudMood in reply to greygoose

Whether or not it reduces antibodies is debatable. And, even if it did, you'd still have Hashi's. And, I'm not convinced that lowering antibodies is even a desirable thing to do.I'm only seeing this from a diagnosis prospective.. as I haven't had a diagnosis yet really..

So I cut the gluten and carbs out because of my diabetes...

Lowering TSH is certainly not desirable unless it also raises FT4/3. Most people are under-medicated, anyway, and if the TSH was lowered independantly of the Frees, it would be even harder to get enough thyroid hormone prescribed, because doctors tend to only look at the TSH.

Exactly why I am annoyed at myself! 😅

As with previous value they probably would have been more likely to prescribe something!

I just need to cross my fingers and maybe beg for a 3 month test of 25g (I know 50g is the starting dose and based on my weight should probably really be 200g, but I'd take anything at this stage! 😅)

Let's see tomorrow if more tests come back and what my GP says.

As I said, still have recourse to my NHS Endo if everything else fails.

He's young and very very good, so might not be so set in the "old ways" as it's very open to VERY experimental diabetes methods... so 🤞

greygoose profile image
greygoose in reply to OudMood

I really don't think that going gluten-free reduces TSH. I've never heard that before. But if you do have Hashi's, it's not surprising if your TSH fluctuates.

Having said that, were both tests done at the same time of day and fasting?

I just need to cross my fingers and maybe beg for a 3 month test of 25g (I know 50g is the starting dose and based on my weight should probably really be 200g, but I'd take anything at this stage!

That might not be a wise move. Starting on too low a dose could make things worse, rather than better because it would possibly stop your thyroid making what little hormone it can, but wouldn't be enough to replace it. So, you would be even more hypo than before and you symptoms could get worse.

As for starting on 200 mcg (NOT g!) that would be really unwise. Basing starting dose is a stupid idea and is probably just more muddle-headedness on the part of doctors who don't really understand what it's all about! Starting on that sort of dose is for people that have just had their thyroid removed, not people with primary hypo.

He's young and very very good, so might not be so set in the "old ways" as it's very open to VERY experimental diabetes methods... so 🤞

That's as maybe, but how much does he know about thyroid?

OudMood profile image
OudMood in reply to greygoose

Having said that, were both tests done at the same time of day and fasting?

The previous tests were done mid-morning and not fasting I don't think..

I've had at least a coffee.

The most recent result I took advice on here and went at 8ish (test 8.20am), fasting mostly (I had low blood sugar and took some glucose tablets, fasting otherwise).

That might not be a wise move. Starting on too low a dose could make things worse

What would be a good starting dose? 50,75,100?

That's as maybe, but how much does he know about thyroid?

Good question! haha

I asked this same question to a diabetic educator who is also Hypo and diabetic and referred me to him.

She says he manages her thyroid and she's happy and feeling good Her hypo was caused post-partum not sure if that makes a difference...

But I guess I'll find out about his expertise at my next appt next month..

Is there a list of good NHS endos that specialise in thyroid? Or is there a way to find out?

greygoose profile image
greygoose in reply to OudMood

What would be a good starting dose? 50,75,100?

50 is the normal starting dose. If you were a big, muscular man you might get away with 100 mcg, but I wouldn't recommend it for you. Even 75 mcg might be pushing your luck a bit.

She says he manages her thyroid and she's happy and feeling good Her hypo was caused post-partum not sure if that makes a difference...

Hypo is hypo, and the only treatment is thyroid hormone replacement of some kind, whatever the cause.

Is there a list of good NHS endos that specialise in thyroid? Or is there a way to find out?

The question is: are there any endos that specialise in thyroid? Not a lot, and even if they say they are, there's still a good chance they know practically nothing about it.

TUK has a list of doctors that members have found helpful, for whatever reason. But helpful to one man is b-useless to another, I'm afraid.

However, you can get that list by emailing:

tukadmin@thyroiduk.org

Pick one that is convenient for where you live and then post on here and ask for feed-back on that doctor by PM - we can't discuss named doctors on the open forum. That's about the best we can do, I'm afraid.

OudMood profile image
OudMood in reply to greygoose

If you were a big, muscular man you might get away with 100 mcg, but I wouldn't recommend it for you.Not a man...but I am a big, not so muscular woman 😂

I am... ehm..... 126Kg so not really a small frail body 😂

Hypo is hypo

Sorry, still stuck in diabetes mentality, where small differences may make difference in treatment or "considerations".

I thought treatment may be more "complicated" for some :)

TUK has a list of doctors that members have found helpful

Will email and see!

Thank you so much GreyGoose!

BTW I have read your story a few days ago... and My Oh My!

I admire your tenacity! It definitely makes me feel that if people like you managed... anyone can!

Although I'm sorry it took you a lifetime to get to this point!😢

greygoose profile image
greygoose in reply to OudMood

I thought treatment may be more "complicated" for some

Oh, it can be. But, not to begin with, and rarely with a GP. Most 'complicated' people have to self-treat if they want to survive.

:)

waveylines profile image
waveylines in reply to OudMood

Worth getting the list but then check them out very carefully - its a motley crew and these days we have little choice......personally I travelled hundreds of miles for mine just to get the box ticked for ndt (was already on it but self funding) - if the nhs endo supports you then its worth it......many dont so be careful! So frankly for me it was worth it so I could get it paid for by the NHS. Having said that the pandemic enable someone I know to not travel at all......her endo did it all by phone! You know what its like in the diabectic world so am afraid the world of thyroid illness is even worse, in my opinion, of getting it diagmosed and optimally managed. As you know with diabetes knowledge is power so the more you know the more you can argue your case and ensure better health.....in the thyroid world be prepared for battle and the long haul. Sorry to be negative but the truth is this site is sooooo busy for a very good reason......sadly.

On the plus there are some amazing people on here who have fantastic knowledge and can really help (they have helped me).......you are not on your own. So post away.....

As for gluten free......I didnt bother.........but ten years down the line with a worsening b12 level and mutiple b12 deficiency symptoms that were worsening despite my efforts of self injecting b12 I took the jump and went properly gluten free. That meant cutting it completely out....there are alternatives on the supermarket shelves these days but cost more. There are some odd foods with gluten in too such as fancy coffees, icecream and tomator ketchup but mostly you can check on the ingredients on the back......its becomes a habit and am guessing with diabetes you have to already check? The result for me has been amazing but in my case I think gluten is an additional issue Aside to my hypothyroidiem as was already on a full replacement dose happily for a long time before this kicked in.

As for diagnosis of my gluten problem......well the GP referred me last March to the gluten ataxia clinic but apart from a letter acknowldeging the referral have heard no more.......good job I didnt wait for them!! Lol....

SeasideSusie profile image
SeasideSusieAdministrator

OudMood

Instead of putting your up and down arrows, I really think it might be more helpful to put the previous results so that members can see how much improvement (or not) has been made and whether, where appropriate, what you are supplementing is the right dose.

OudMood profile image
OudMood in reply to SeasideSusie

Thanks.

I haven’t seen anyone doing that so thought it may be too much! 😅

I’ll do that…

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