I have only recently been diagnosed with hypothyroidism, late Sept 2019.
TSH 28.7 (0.27-4.20)
FT4 10.0 (0.27-4.20)
Anti TPO Antibodies 237 (0-34)
Anti Throglobulin Abs 312 (0-115)
Prescribed 50mg Levothyroxine and retested in Nov 2019.
TSH 9.06 (0.27-4.20)
FT4 15.7 (0.27-4.20)
Obvs an improvement but not there yet, so I went onto 50mg 5 days a week 75mg 2 days a week. Was retested in Jan 2020 with little change to these results, I didn't get the doctor to print them out, but I think TSH was 8.6, not sure about T4. So am currently taking 100mg and will be retested in March.
So, basically in the process of taking this medication I have increasingly felt worse. My previous symptoms were only fatigue and brain fog. Now whilst it fluctuates during the day I often feel much worse it's very frustrating. I just feel ill, dizzy, hot head (like I've got a fever), totally unable to concentrate and zero energy. I'm concerned that whilst it looks like things are going in the right direction results wise, and perhaps I just need to get to the right medication level, I'm not feeling any better and without the T3 results it's impossible to see whether things are actually improving!
I've asked my doctor to test my T3 levels but haven't had a response yet, last appt I asked about vitamin testing and this isn't something she'll do. Perhaps with a bit more insistence she would, she's a pretty great doctor.
Anyways for the time being (rather than waiting til March) I've decided to get the tests done myself as I'd like a comprehensive picture of what is going on. Which test would you recommend? I was thinking about doing the Thriva one as it seems like good value for money – £64 with discount – but I haven't seen anyone recommend it. So just wondering if anyone has any particularly strong feelings about which one to go for?
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Hi, I can only answer re the blood tests recommendation (although I totally empathise with not feeling well). I can't comment on Thriva but Medichecks have been excellent for me and they do 'Thyroid Thursdays' special offers (though you've just missed it this week). I think I paid £59 with them. Also have you also had relevant vitamins tested? (B12/D/Iron) I can't advise fully on this as still learning myself but someone else on here will be able to. I wonder what else might be going on as there's this 'reverse T4 thing' which can happen and which I totally don't understand.
No, there's no 'reverse T4 thing'. I think you're confusing T4 with T3. You can have reverse T3, but it's pretty much irrelevant.
rT3 can be caused by many, many things, only one of which has anything to do with thyroid. If your FT4 is too high, more T4 will be converted to rT3 than T3, as a mechanism to get rid of excess T4 and avoid excess T3. rT3 is inert and doesn't hurt you in any way.
Testing it is expensive and doesn't give you any useful information. It just tells you if your rT3 is high, but it doesn't tell you why. So, not much point in doing it. And, high rT3 is unlikely to be the cause of anyone's problems. The problem with the OP is that she has Hashi's and is grossly under-medicated.
If it is genuinely just that I am under medicated (currently Levithyroxine 100mg/day but only that dose for 2 weeks so far), the only option I'm left with is feeling rubbish and being patient until my levels are normal. I realise that is something I need to do anyway, it's a – literally – painfully slow process.
In the meantime, I'd like to know what is going on with everything else in case I can help speed things along. So, I've ordered the Advanced Thyroid Thriva test which also includes Folate, Ferritin, Vit D and B12. Will report back.
Good idea to get everything tested, but unlikely you'll be able to 'speed things along'. All things hormonal take time, and patience is the key. We've all been there and done that. Trying to cut corners to speed things up just takes you back to square one, I'm afraid.
So is it normal to feel worse during the process of finding the right dose? Not being facetious, this is a genuine question. You obvs know more about this than me. I've also seen you comment that you can't really tell how anything is going without a T3 test, hence my eagerness to get one.
I wouldn't exactly use the word 'normal', but it does happen, yes. It's really not as straight forward as doctors would have you believe. You don't just take a little pill every day and be as right as rain. Well, some people might, but not everybody. First of all, that pill has to suit you, and some people don't do well on some pills due to the fillers. Once you find the right pill, you have to be on the right dose. And, as levo is just T4, you have to be able to convert that T4 into T3 - which is where the FT3 test comes in. And, then, of course, if you have Hashi's, that complicates everything because levels can jump around. And, then, the nutrients all have to be optimal so that your body can use the thyroid hormone correctly. It can take a lot of trial and error to get all these factors right. And, during the periods when you get it wrong, you most certainly can feel worse than before you started. It is hellishly complicated, and doctors don't know the half of it.
Which brand of levo are you taking? Have you tried any others?
The 100mg I'm taking is Accord, the 50mg was Activis (i believe this is the same as Accord now?) and the 25mg was Wockhardt.
So inititally Activis (50mg), then a mix of Activis and Wockhardt (50mg 5 days 75mg 2 days) and now just Accord (100mg every day).
As far as I know I've not had any obvious reaction to any of the fillers tho when I initially started taking the medication it hurt my stomach, this was helped by drinking more water with it. I take it in the morning but have considered switching to the evening with, as suggested, a 3hr period of not eating before taking it. Not sure whether to do this or not tho. Also my doctor never suggested that it would be sensible to have the tests at a particular time of day, I'll make sure I do this in future. So the test results I posted are from different times of day.
OK, so you've had a comprehensive sample of the various brands, without reacting badly to any of them. That's a good start.
Now, you need to get onto the right dose. At the moment, you're under-medicated. Your TSH should come down to one or under. Once it gets there, you can find out how well you convert.
Doctors don't know about times for testing. They can't seem to get their heads around the fact that TSH is highest early morning, and drops throughout the day. And, if they did understand that, they would probably use it against us by insisting we only test in the afternoon! So, best not to tell them. Just make sure you get your test done early. If tests aren't done at the same time of day every time, we cannot compare them.
Even if you have high rT3, it's not responsible for you not being well. It's just a safety valve to stop you having too much T3 in your system. But, as I said, it can be caused by many, many things - low ferritin, high cortisol, infection, low-calories diets, long-term beta-blockers, etc. etc. etc. But, the test won't tell you what's causing it.
If you have over-range FT4, though, you can almost guarantee that you have high rT3. No need to test it.
Write it down. Have a little notebook that's always with you, in which you note anything and everything you want to remember. Just the act of writing helps it go into the memory.
I've never quite got my head around Thriva's tests or ordering them. I think I saw that someone on the forum had said that you sign up to regular tests or something, and when members post a picture of their results they have been confused by the graphic because Thriva appears to show an "optimal" range as well as the full reference range and this seems to be OTT when you know how to interpret results.
I use Medichecks and Blue Horizon and would recommend them both. If you want the full thyroid plus vitamin panel then these are the recommended tests:
Medichecks Thyroid Check ULTRAVITmedichecks.com/thyroid-func... You can use code THYROIDUK for a 10% discount on any test not on special offer
Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:
For the fingerprick test:
Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.
Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
**
If you don't want to do a fingerprick test (some people find them easy, some find them difficult) then you can arrange venous blood draw with either company at extra cost, details will be on their websites, or you can arrange your own blood draw with maybe your GP's surgery (mine wont do it), your local hospital (mine wont do it) or if you have a nurse friend.
If you want to do a fingerprick test, these are some tips that I pass on:
* Be well hydrated, drink plenty of water the day before, and before you do the test.
* Some people take a shower before hand, some run up and down the stairs to get blood flowing. Personally, as I can't run up and down the stairs, I circle my arm round, windmill style.
* Have a bowl full of hot water, dip hand in and out, swish around, hand needs to go red. If blood flow stops, you can always swish round in the hot water again.
* Stand up to do the test. Make sure your arm is straight down when collecting the blood. Either use a small step stool to raise yourself well above the work surface, or put the collection tube on a lowish shelf. One member uses an ironing board so she can get the perfect height.
* Prick finger on the side, not the tip. I find that half way between the nail bed and tip is about right, or maybe slightly nearer the nail bed rather than the tip. I use my ring finger, but middle finger is next best for me.
* Do not squeeze your finger to get the blood out, it can damage the blood and it may not be usable
I've recently done 2 tests. The first one there was very little blood coming out which was unusual for me so I used a second finger and between the two I gradually filled the tube. However, when I checked the prick site for the first finger the actual cut was very small and as I've had some of these lancets fail before I put it down to that. When I did the second test this is what I did
* Prick my finger as usual, make a very slight twist with the lancet whilst blade is still in the finger. I'm not talking 90 degrees or anything, just a very slight twist to make the cut just slightly bigger, it doesn't hurt or cause a blood bath! This made a big difference, 11 generous drops of blood filled the tube in less 2 minutes.
If you supplement with Biotin, or a B complex containing it (B7), leave it off for 7 days before doing any blood tests as it can give false results when biotin is used in the testing procedure, and most labs do use it (including Medichecks and BH).
If you fail with a fingerprick test then both companies will send you a new kit free of charge, and you could request a venous blood draw replacement kit and then arrange the phlebotomy at extra cost.
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When doing thyroid tests, we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* Remember to leave off Biotin or B complex.
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
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Anti TPO Antibodies 237 (0-34)
Anti Throglobulin Abs 312 (0-115)
Are you aware that your raised antibodies suggest that you are positive for autoimmune thyroid disease aka Hashimoto's which is where the thyroid is attacked and gradually destroyed.
Fluctuations in symptoms and test results are common with Hashi's.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems so the tests recommended above would be perfect. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.
I prefer the more user friendly ordering system of BH and Medichecks, and as the lab Thriva uses is used by BH and Medichecks I don't think there's any advantage in changing.
I don’t have any experience except of Thriva I didn’t find ordering it a big deal only getting the blood out of my unyielding digits and I still haven’t got a blood sample to send them - so far so bad! They did warn me about hot weather and not to send samples but if you had they would provide a free replacement test kit and they did when my sample proved problematic. They get back immediately if you email them so that side seems all ok to me better than expected to be honest. However, I would bow to your superior knowledge of the companies offering the tests . But you deffo don’t have to sign up for regular testing with them and they are cheaper.
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms
Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet. Northstar 25mcg is also Teva brand
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
Thanks for that wealth of information. However, even tho I'm a relatively new to it I've already spent a lot of time reading up on the condition so have discovered most of this already. I posted my antibody results because i figured it would be useful for you to see I have Hashimotos, but it's interesting to know that Selenium intake can effect antibody levels! I thought it was just useful in the T4 to T3 conversion process.
I'm also not expecting any change after 2 weeks and I realise it's too soon to test for that. I have never had a T3 test tho so I don't see what the harm would be in having that tested now, also would get the suggested vitamins and minerals tested. But I guess it might be worth waiting another 4 weeks to have an accurate read on this level of medication.
Since I was diagnosed I have started taking supplements, having read up on what might be useful - Vitamin D, Zinc, Magnesium, Selenium, ALA, Biotin and just for the heck of it 5-HTP at times as I thought it might help with sleep and mood. I should note, I don't take these until at least 4 hours after taking my Levothyroxine.
This is what Thriva test for, I don't think you have to sign up for in the long term but the do offer a regular testing service. No one seems to recommend it though so I was just wondering why, especially as it seems cheaper ...
TSH
Total T4
Free T4
Free T3
TGAB
TPO / TPEX
Vitamin D
Folate
Vitamin B12
Ferritin
I'll have a look at the two you suggested SeasideSusie and compare, thanks for those. Also, appreciate the Thyroid Thursdays tip for medichecks msmono ! Also the Blue Horizons one might be good for me as I drink quite a lot of coffee so would probs be good to check my Cortisol levels.
I've done a self pin prick test before no trouble so not worried about that, but will ensure to lay off the biotin for a week before doing the test.
Thanks for comments everyone, nice to have a place to discuss this with people in the same boat and know what they are talking about!
The problem I have had with thriva is I cannot get a decent blood sample with the spigots and it is another 50 or 60 quid to get their nurse to come and do a venous draw. they will not provide you with availability until you have paid up front which I do not like as I want it very early morning and I know higher rates can be charged for weekends etc but I don’t know if they apply them or not. I think it is cheaper For a venous draw with the other two companies on thyroiduk. I think most people can get a good sample and I am just unlucky so it will probably not be an issue but bear it in mind before you buy.
I did send off a test from a bleed from my leg (🙄 very itchy shins and I overdid the scratching for relief - I though blood is blood so why not?) they contacted me to say the sample was no good but they did send me another test for free which I appreciated. It is a good comprehensive test at a reasonable fee if all goes well with getting the blood sample.
Oh I just saw pin prick test Is fine with you. I’d go for it as it is better value than the others even with discounts. I think it is a newer service so they need to get a foot hold hence the lower pricing to try and get custom. Plus they just offer the full panel thyroid test - a one trick pony might reduce costs too. They do stuff for NHS so useful if doc starts to claim it’s private so they are not accepting it. Harder for them to use that ruse if NHS testing is just the same company.
I got my results through from the Thriva test. The only thing their doctor is flagging up is the low vitamin D... does anyone think any of the other levels - which they say are in range - look a bit low? Looks like my current dose of Levothryroxine (100mg) is definitely is improving things, the best part is that I've started feeling a lot better! I guess you were right greygoose that I needed to have a bit of patience
It would have been much better to start a new thread with these results because very few people are going to see them tacked on to an old thread. But, for what it's worth, I think you're still under-medicated - could do with an increase of 25 mcg. Your TSH is still a bit high, and your FT3 and FT4 are only about mid-range. Most hypos need them higher than that.
Your antibodies are high, meaning that you have Hashi's.
Your B12 could be higher, as could your ferritin.
Your vit D is much too low. It's below range! You should see your doctor about that, because you need loading doses of D3.
Thanks for your reply. I posted it here because I thought it was best to keep it in the context of my previous results/post and figured everyone who had commented would get a notification. Apologies if that isn't the best way to do things on this messageboard. Seemed logical to me but I can appreciate it could have been overlooked.
I was thinking there was still some room for improvement with TSH, FT4 & FT3 but am concerned my GP is gonna think they are fine. I'll need to have an NHS blood test before I go to see her again and will make sure I follow advice here of early morning test prior to medication but if I end up with similar results I hope she will still consider increasing my medication.
Will definitely talk to her about Vitamin D. I am currently taking 500iu a day which is obviously too little!
Thanks for the response on the B12 & Ferratin, can you recommend some good supplements for these? I'll start a new thread if that is better.
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