latest blood results : I have been trying to... - Thyroid UK

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latest blood results

jodary profile image
46 Replies

I have been trying to improve my vitamins in order to improve my poor conversion latest results from medichecks

CRP 2.31 ( >5)

Ferritin 165 (30-332)

Folate 19.6 (>7)

Vit B12 88.5 (>37.5)

Vit D 68 (50-250)

TSH 0.962 (0.27-4.2)

T3 3.9 (3.1-6.8)

T4 24.9 (12-22)

I feel unwell , am unsure if T4 that high could be the reason as my T3 has always been very low and I’ve not felt this bad. I have a GP appointment on Tuesday and am reluctant to go as if they were to see my T4 result they would want me to reduce dose for sure bc and I am due a blood test there. I know my Vit D is still rubbish but is it likely that B12 and Vit D are hindering conversion as I’ve improved my ferritin and folate with little effect. Should I leave T4 off for a few days to reduce my high T4 and see if it helps? I’ve had T4 at 22 and 20 before but not felt as bad as this. I was going to ask GP about seeing an endo but I’ve read on here so many times that they are a waste of time. Really not sure what to do , blood test was done at 8.30 am and only had water no thyroxine taken prior to test . I think this is the highest T4 result I’ve ever had !

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jodary
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46 Replies
greygoose profile image
greygoose

It's too high. Whilst it might or might not be adding to your symptoms, what it is doing is making your conversion worse and down-grading the efficacy of what little T3 you have. It's all to do with the deiodinase used to convert T4 to T3, and how it is different when the FT4 is too high, and it's a bit complicated, but the upshot is, an FT4 that high is bad news. You do need to reduce your levo.

Whether or not that will improve your conversion enough to make you well is anybody's guess. But high FT4 levels like that long term, make you vulnerable to other health problems. Try a reduced dose for six weeks and see what happens. Then, if you still feel so unwell, and feel you need to take T3, then ask to see an endo. But pick your endo wisely. Not all endos are made equal. And all are certainly not T3-friendly! TUK has a list of patient-recommended endos/private GPs, but I no-longer have to address to write to. Sorry.

jodary profile image
jodary in reply togreygoose

It has never gone this high before and I’ve been on the same dose for many many years. What reduction would you suggest ? I have 100mcg tablets ? Is it possible to take one less a week or is it a matter of cutting pills. I’m so lost , and know I can’t ask a gp. I was once reduced to 75mcg a day purely on tsh and became really unwell with a tsh of over 8 . So was put back on 100 . I don’t know what to do, have a gp appointment on Tuesday but don’t feel like going.

greygoose profile image
greygoose in reply tojodary

OK, so are you still on 100 mcg? Do you have Hashi's?

jodary profile image
jodary in reply togreygoose

I have always been on 100mcg and no I don’t have Hashi’s I’ve been on thyroxine for 40 years

greygoose profile image
greygoose in reply tojodary

ok... so it's a mystery why your ft4 has gone so high, then. I take it you always leave a gap of 24 hours between your last dose and the blood draw?

So, what to do... For a start i would stop my levo now so that it"s lower for the nhs test while you try and sort this mess out - because your doctor sure as hell isn't going to sort it. You don't want your prescription changed until you know what's going on.

After that, can you cut your pills into quarters and try 75 mcg for 6 weeks and see what happens?

jodary profile image
jodary in reply togreygoose

That worries me because I went on 75mcg once before and ended up in a real mess even had vertigo. Yes it was 24 hours since last dose for this test. The only thing I have done differently is I have been on b complex . I would be happier doing 100 and 75 alternate days if it can’t be done by dropping a couple of tablets. If Im cutting them they may not be equal . The thing with nhs test is they will only do tsh which will be fine

greygoose profile image
greygoose in reply tojodary

Well, it doesn't matter what they test, they wouldn't understand the results. But you said you were reluctant to go because if they saw your FT4 result they would want to reduce your levo. How are they going to see it if they don't test it and you don't show it to them? :)

Yes, I know you tried 75 before and it made you worse, but at that point your FT4 wasn't as high as it is now, was it? So, it won't necessarily have the same effect.

I doubt the B complex has anything to do with your high FT4.

It's really not a good idea to 'drop a couple of tablets'. Most people feel best if they take the same dose every day. Dropping a couple of tablets would mean that there's a huge difference between some days and others. And it's very unlikely that that would be enough of a drop anyway, your FT4 is very high. You want it to come down to something like 19.

It doesn't matter if the doses are uneven when cutting the pill. The differences will be tiny, and the final amount will be the same because you're going to take all the bits, just at different times. That small difference would be far more easily tolerated than 'dropping a couple of tablets' a week.

Anyway, that's what I would do in the same circumstances.

jodary profile image
jodary in reply togreygoose

Thank you for your advice, I really appreciate it. I can’t forget the experience I had last time on 75 but at least I will be in control of it this time .Last time they took my 100s off me and replaced it with 50 and 25 . Thinking about it if I test in 6 weeks then it’s not likely I will be as low as that time before if I’ve got to get down from almost 25. It all really scares me but thank you for helping me . Have been really depressed today

greygoose profile image
greygoose in reply tojodary

Were the 25 mcg tablets Teva? If so, that could have something to do with why you felt so bad. Teva upsets a lot of people. So it could have been that rather than the reduction in FT4.

jodary profile image
jodary in reply togreygoose

No they weren’t Teva but my tsh rose to over 8 and I ended up back on 100 where I’ve stayed, that was in 2018 I believe. I have just thought, I have recently lost about 10lb which might have affected my dose.

helvella profile image
helvellaAdministrator in reply tojodary

What make were they? And what makes have you been taking?

Changes can sometimes make significant differences.

jodary profile image
jodary in reply tohelvella

I have been taking the same brand for many years from Boots . Have not had any changes . My T4 has always been top of range but not over range. Some changes for me are I’ve lost a bit of weight due to being depressed . But last couple of months have had what I thought were hypothyroid symptoms and for last 2 weeks haven’t left the house. I was shocked at my blood test results as never had T4 that high and thought that improving my ferritin and folate might have helped my conversion and improved my T3 .

jodary profile image
jodary in reply tohelvella

Would it be a good idea to not take thyroxine for a couple of days to help the level to drop a bit ? I’m very aware now that it’s very high

helvella profile image
helvellaAdministrator in reply tojodary

I've never done that so have no personal experience.

However, I tend to run away from big changes. Even temporarily.

If you skipped for two days, for example, what would you then do? Go back to the same as you have been taking? If so, that doesn't really address the issue and might just leave you feeling different but not better.

A day without might help. But you need to decide on a more permanent change. Like 87.5 or 75. Effectively you need to find a dose that is just less than you need. Take that for a while, a few weeks. And re-assess.

jodary profile image
jodary in reply tohelvella

I was thinking maybe leave it off for 2 days to let it drop then resume at a lower dose Have just been trying to research whether I could do 100 and 50 on alternate days. It seems to suggest that that alternate day dosing is ok and would be easier to cut a 100 in half. I’m afraid of trying to cut into quarters as it could crumble

helvella profile image
helvellaAdministrator in reply tojodary

It is often said that alternate day dosing such as you mention is fine.

In my personal experience, it doesn't work for everyone. I was on alternating 100 and 125. Never settled on it - much preferred 112.5 every day.

But we are all different.

jodary profile image
jodary in reply tohelvella

I’m concerned about how to get the required amount. I only have 100 mcg and am worried about cutting into 4 . I will definitely try it . Feeling very worried now about how this is going to work out. Can’t forget the last time I was reduced to 75 by the gp . They had to reinstate 100 after my tsh went over 8 and I was very unwell. At least I will be in control if I leave them out of it . Thank you for helping me

helvella profile image
helvellaAdministrator in reply tojodary

I'd not be confident of accurate cutting/splitting. But it does depend on make, splitter, and skill.

Remember imperfect splitting is still likely better than alternate day dosing. Be careful not to lose crumbs.

jodary profile image
jodary in reply tohelvella

I am trialling 87.5 but have just worked out that at 612-50 instead of 700 over a week it’s less than a drop of one pill . Is that likely to make a difference ?

helvella profile image
helvellaAdministrator in reply tojodary

We are all different.

I have been through 100, 112,5 and 125. And felt different on each dose.

Others seem to be very tolerant of changes.

But it is the sort of thing that might creep up on you rather than your immediately noticing a difference.

jodary profile image
jodary in reply tohelvella

I’m a week in and am feeling worse than ever . Anxiety through the roof . Was making me wonder if it’s related to the high T4

tattybogle profile image
tattybogle in reply tojodary

When i have lowered dose slightly due to high fT4 , which i have done few times due to fT4 going over range for no apparent reason, the first few weeks have often felt undermedicated or just a bit all over the place symptom wise , even the times when i have eventually felt better on the lower dose ... if i were you i would give it more time ... stay on 87.5 and re asses how you feel around week 5/6 ish , or longer if not feeling too dreadful at that point .

jodary profile image
jodary in reply totattybogle

Omg that’s so reassuring! I was starting to think so had made a mistake. It’s so interesting to hear that your Ft4 has also gone high for no apparent reason. What was the outcome? Did you stay on the lowered dose? I will feel so much better now about sticking it out.Ive had a horrible day today was feeling like I was going to be able to cope. Thank you !

tattybogle profile image
tattybogle in reply tojodary

sorry can't string a logical sentence together just now . (some details may be in here: healthunlocked.com/thyroidu... )

. but sometimes i've stayed on lower dose and it's been an improvement , and other times i've had to put it back up a bit .... but what i have learned is this .. make a note of , but otherwise just ignore how it feels for the first 4/5 wks ..... then pay more attention to how you feel after that.

jodary profile image
jodary in reply totattybogle

Are you on Levo only ? I will try my best but today have been lying down all day and I don’t want to be doing that with Christmas coming. I’m hoping the slight reduction might help my conversion which has been much better in the past. Why T4 has gone so high I don’t know , only had a test as I was feeling so rubbish but I do feel worse now

tattybogle profile image
tattybogle in reply tojodary

levo for 20yrs... have added a little T3 this year ... slowly experimenting , tried 75mcg + 6mcg then 9mcg T3 / then 87.5 + 9mcg T3 / then ...cant remember.... anyway al of thgem felt wrong ... i'm currently on 100mcg levo with just 4mcg T3 which seems better . .... sorry for typo's i'm always broken on sundays since i had to go back to work

jodary profile image
jodary in reply totattybogle

I sometimes feel that everyone has T3 but I have no clue how to go about it . And being on other medications wouldn’t be confident doing it myself for fear of it affecting them

greygoose profile image
greygoose in reply tojodary

Losing weight might have a slight effect, but not to that extent. If I were you, I'd get my antibodies retested - TPO and TG.

jodary profile image
jodary in reply togreygoose

Thyroglobulin. 18.7. (0-115)

Thyroid peroxide. 11.2 (0-34)

From this weeks blood test

greygoose profile image
greygoose in reply tojodary

Hmmm... Well, I don't know what to suggest, then. It is possible to have Hashi's without high antibodies but You would probably have noticed before now if you had. It's a mystery.

jodary profile image
jodary in reply togreygoose

Yes, my tsh has also gone up this time from 0-138 to 0.962, so just approaching 1 . Don’t understand why if my t4 is so high. Is it because my T3 is low ?

greygoose profile image
greygoose in reply tojodary

I would say yes, low T3 is likely to keep the TSH up. It has more effect on TSH than T4.

jodary profile image
jodary in reply togreygoose

This is the proof that GP do completely inadequate testing. To just do TSH which in my case would be acceptable and then not look at my T4 and T3 which are certainly not . But we wouldn’t know unless we had paid for private testing which we have to pay for potentially every 6 weeks if changing dose .

greygoose profile image
greygoose in reply tojodary

That just about sums it up, yes. I'm afraid that's the way it is.

samaja profile image
samaja

With age your requirement and absorption of levo can change and what worked for a long time may no longer be adequate. It would be interesting to know what your RT3 is like as with FT4 this high I suspect it would be high as well and that would be an indication to possibly add T3 into the mix.

jodary profile image
jodary

Thanks for replying, I wouldn’t have any idea how to find this out . This is the problem, will see how I go with a reduction in thyroxine before I try and get any help but I fear that will mean going to the gp and I’ve tried to stay away from them as they really know nothing. If they had done my blood test it would have been tsh only and as that looks ok on the surface it would have remained at that and they would have told me I had anxiety no doubt .

greygoose profile image
greygoose in reply tojodary

Forget rT3, you don't need to know what it is. it is going to be high with such a high FT4, yes, but it's irrelevant. It is inert and only stays in the system for about two hours before being converted into T2. It doesn't cause symptoms and it certainly isn't an indication that you need T3. The indication of needing T3 is having a low T3, which you have. We can tell you are a poor converter from comparing the FT3 and FT4 results, we don't need to test rT3 - which is expensive, takes a long time and would have to be done privately. And your GP wouldn't have a clue what it is, anyway! So, forget that, it's not the problem. The problem is: why did your FT4 shoot up so high on the same dose, when you don't have Hashi's?

There is one other possibility that hasn't been discussed: lab error. Does happen. But the only way to find out is to do another test.

jodary profile image
jodary in reply togreygoose

Thank you for clarifying, I hadn’t heard of it before. My T4 in July was 22.1 (12-22) but I felt ok even though T3 was still as low. I can’t afford another medichecks for a few weeks, would you still go ahead with the reduction in dose ? If I asked gp for a test it would only be tsh do wouldn’t really help

greenfingers profile image
greenfingers in reply tojodary

My sister in law has similar readings to you, she doesn’t know why hers has changed either. Her GP sent her to the hospital for a blood test which I believe was a bit more informative. She is doing alternate doses 100 and 75, she’s re testing in about 3 weeks. I’d try alternate and get a retest. Get a good pill cutter and give it a go.

I too have Hypothyroidism so I know how you feel. Good luck.

jodary profile image
jodary in reply togreenfingers

Thank you , do you know if she was on 100 before this happened ? I’ve been on 100 for many years .

greenfingers profile image
greenfingers in reply tojodary

Yes she was.

jodary profile image
jodary in reply togreenfingers

Thank you, would you be able to let me know what happens? Sounds like she has a good gp mine would have only tested tsh which was ok , they wouldn’t have gone any further than that

greenfingers profile image
greenfingers in reply tojodary

I’ll do my best.

jodary profile image
jodary in reply togreenfingers

Thank you so much

greygoose profile image
greygoose in reply tojodary

OK, but that was still too high.

Catseyes235 profile image
Catseyes235

Your emphasis must be HOW YOU FEEL!! Being free of all hypo symptoms despite having a very low TSH for over 20 years is the MOST important thing to me. (Check out my posts for more info). Good luck

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