I need some help please. I was taking 150mcg of Levothyroxine, my blood test in Feb 2015 showed TSH 0.33 and I was told that I was over-medicated and it was reduced by 50mcg in Sept 2015. My blood test in Aug 2015 showed TSH <0.1 and Levo was increased to 125. My blood test in Oct 2015 showed TSH 0.59, June 2016 8.4 and Levo increased to 125, Aug 2016 0.68. It says on my results print-out that my levels should be between 0.3 and 5.5 so why was I told In Feb that I was over medicated. Also another question, since about June my ears have been weeping and are really itchy, could this have something to do with my thyroid.
Thank you for any help.
Carol
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Redrow
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Obviously because the doctor you saw on that occassion knew nothing about thyroid. Actually, your TSH should be between 0 and 1. 5.5 is much, much too high. Besides, they shouldn't be dosing by the TSH, it is unreliable. They should at least be doing an FT4.
Sorry, don't know about the ears, but it doesn't sound like a thyroid problem, sounds more like an infection. Better see your doctor about that.
Redrow The way I am understanding your post confuses me. Correct me please if I've got it wrong. I've copied and pasted, and bolded, from your above post so I don't get anything wrong. My replies are in italics. Underlining is my emphasis.
I was taking 150mcg of Levothyroxine, my blood test in Feb 2015 showed TSH 0.33 and I was told that I was over-medicated and it was reduced by 50mcg in Sept 2015. Why, when the test was done in February, was the reduction in meds not done until September? And 50mcg is a hefty decrease, it's usually done in 25mcg increments, same as increases.
My blood test in Aug 2015 showed TSH <0.1 and Levo was increased to 125.This doesn't make sense with your previous sentence. You said your meds were reduced in September before, now you're saying that Levo was increased to 125 in August. Also, when TSH is suppressed, as <0.1 shows, Levo is usually reduced not increased.
My blood test in Oct 2015 showed TSH 0.59,
June 2016 8.4 and Levo increased to 125,You said you were increased to 125mcg in August 2015 so weren't you already on that dose?
Aug 2016 0.68
I've read through it a few times and it still doesn't make sense to me.
Can you check through your dates/doses again.
I agree with Greygoose, the ears sound more like an infection.
I see from your older thread that you also have type 2 diabetes. I have no knowledge of how diabetes and medication for it can affect thyroid so I can't specifically answer with that in mind, so my reply is more 'general' but may still apply.
Also, I am assuming that 0.3-5.5 is the reference range used for your TSH test (ranges vary from lab to lab).
As Greygoose says, dosing should not be by TSH but by FT4 (which is frequently done) and more importantly FT3 (which is rarely done).
In february 2015 you were in range with your TSH at 0.33 and you were kept on 150mcg Levo.
By August your TSH showed suppressed at <0.1 and really FT4 and FT3 should have been checked and only if they were over range should Levo have been reduced, but your dose was dropped to 100mcg in two increments of 25mcg.
By June 2016 your TSH had increased to 8.4 and Levo was increased to 125mcg.
And now in August 2016 your TSH has reduced again to 0.68, presumably you are still on 125mcg Levo.
How do you feel, thyroid wise? Do you have any symptoms? Did the change in Levo dose make you feel any different?
I think you need to ask for your thyroid antibodies to be tested. This fluctuation in your TSH may very well be due to autoimmune thyroiditis aka Hashimoto's disease. Hashi's is where the antibodies attack and eventually destroy the thyroid. Whilst these attacks happen your symptoms and test results fluctuate.
There are two types of antibodies - Thyroid Peroxidase (TPO) and Thyroglobulin (TG). I believe the NHS only does TPO. You could have negative TPO antibodies and still have Hashi's because you could be positive for TG antibodies.
So you could ask your GP to test your antibodies, also ask for FT4 and FT3 to be tested. And while you're at it ask for Vit D, B12, ferritin and folate to be tested. All are important for our thyroid health and for thyroid hormone to work property, all have to be at optimal levels and not just in range.
If your GP isn't willing, you can get all these tests done privately with an at home fingerprick test from Blue Horizon. Thyroid Plus Eleven is the best one to cover everything bluehorizonmedicals.co.uk/T...
If you can get some of the tests through your GP then you could go for one of Blue Horizon's cheaper bundles with fewer tests.
Once you have these test results we will have a clearer picture so make a new thread, give results and reference ranges, and members can make suggestions. Give as much information as possible about other conditions and medications also.
Got my results back today, sorry that are a bit long.
Please find attached your results in PDF format, and our Doctor's comments directly below.
This is a hyperthyroid result (overactive thyroid gland). The high free thyroxine level suggests that there is some issue with your thyroid function though it has yet to affect your TSH levels. You may have symptoms already - including weight loss, rapid heart rate, sweating and anxiety, amongst others. If you are already taking thyroxine, your dose may be too high - if not, this result suggests that hyperthyroidism is a possibility. I advise you to contact your usual doctor to discuss this finding in due course. The finding of a positive thyroid antibody result in addition increases the possibility of your having autoimmune thyroid disease, such as Hashimoto's thyroiditis or Grave's disease.
The Folate (sometimes known as Vitamin B9) level is elevated. As with high doses of Vitamin B12, this situation is not likely to represent a significant overdose – as a water soluble vitamin, it is usually well tolerated by humans even in high concentrations. Supplementation or following a diet rich in the vitamin (for example fresh green vegetables) is the usual reason behind a high level of folate in the blood. Excess folate in the presence of low Vitamin B12 levels can lead to problems however – the B12 deficiency can be masked by the action of folate which will apparently resolve the megaloblastic anaemia caused by deficiency of either vitamin, but will not resolve the effects of B12 lack. It is important therefore to ensure that the Vitamin B12 level is acceptable if a high Folate level is detected.
Indeed, in this set of results - the vitamin B12 level is borderline low, and although technically in range some experts believe levels of 400-500 are desirable and that levels below this may lead to symptoms. Low Vitamin B12 levels can lead to Pernicious Anaemia (PA), a state of deficiency of the red blood cells in which there is reduced quality and number. Characteristically, the red blood cells are enlarged in this state (if the deficiency is severe and longstanding). Vitamin B12 is commonly found in many foods, particularly meats. Deficiency can develop if intake of the vitamin is reduced or if absorption from the gut is impaired. Poor absorption owing to a deficiency of Intrinsic Factor (IF) is the underlying reason for PA. Vitamin B12 deficiency in the longer run can lead to nervous system disorders – with sensation changes, loss of power or co-ordination, gut disorders and (rarely) dementia or mental illness. Lower level deficiency has been associated with a range of symptoms such as fatigue, memory impairment, irritability, depression and personality changes.
I advise you to speak to your doctor about the lower B12 level.
We always recommend (although the choice is yours) that you share these results with your usual G.P. who will have access to not only your medical history, but also your physical self and will therefore be in a better position than ourselves to make a full assessment of any symptoms you are experiencing.
OK, I copied and pasted the URL and saw it on your photobucket. Both of your URLs gave the same picture.
Vits and mins first.
Ferritin 140.2 (20-150) Wow! OK, in range but you can't go any higher really. Are you supplementing? Did you have an iron injection?
Vit D - 65. Really could do with being 100+. You can supplement with D3, I think probably 5,000iu daily for a month might be enough then a maintenance dose of 2,000iu daily. I seem to do very well with supplementing D3, it got mine up very quickly and 3 x 5000iu weekly is too much for me now so I am dropping it down to 2 x 5,000 weekly. It's advised to retest a couple of times a year (I do mine with City Assays fingerprick bloodspot test £28). When taking D3 we also need K2-MK7. Vit D aids absorption of calcium from food and K2 directs the calcium to bones and teeth rather than soft tissues and arteries.
B12 at 195 is too low. Take note of what BH's notes say. Discuss with your doctor, you may need B12 injections. Anything under 500 and there's a risk of neurological problems. The Pernicious Anaemia Society recommends 1000. If your GP wont do anything you can supplement with Solgar or Jarrows sublingual methylcobalamin lozenges which you dissolve under the tongue for absorption directly into the bloodstream thereby bypassing the digestive system. Start with 5000mcg daily. Health Unlocked have a Pernicious Anaemia forum if you want to check that out for more information and guidance from their members.
Folate 45.4 (10.4-42.4) Are you supplementing with folate or a B Complex?
When taking B12 we should take a B complex to balance the B Vits. Be sure to get one with methylfolate rather than folic acid. Folic acid is synthetic and needs to be converted by your body to folate. However, you don't need to increase your folate as it is already over range so find one with a small amount of folate. Thorne Basic B and Jarrows B Right are generally recommended here, but do take a look at the folate level. I think you should be able to find one with a smaller amount of folate. I'll have a look later and try to find one for you.
Thyroid results then.
TSH: 0.43 (0.25-4.2)
FT4: 28.06 (12.-22)
FT3: 3.84 (3.2-6.8)
You have a conversion problem rather than being hyperthyroid as mentioned in BH's notes. You need the addition of T3. You can either discuss this with your GP who should hopefully refer you to an endo and hopefully the endo will be T3 sympathetic and ask your GP to prescribe it. Your GP's surgery will have to pay, it is very expensive for them and chances are he wont agree. Or you can self medicate by sourcing T3 from the recommended reliable suppliers members use. You would need to lower your Levo and add in T3 gradually.
I can't quite read the antibody results but can see they're both high - TPO getting on for 200 I think, TG getting on for 600 I think??? It's very faint.
So, you have autoimmune thyroid disease aka Hashimoto's which I thought you might as in your previous posts we saw fluctuations in your results. You need to do all you can to reduce the antibody attacks, and that means going completely gluten free, some people also need to be dairy free. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. It has to be 100%, no cheating, no matter how much you love bread etc. The least bit of gluten will start an attack and the effects can last a long time. Also keeping the TSH low helps, as does supplementing with selenium (selenium also helps with conversion of T4 to T3).
I'm off out with the dog. Any questions just shout. I'll try to remember to look for a B Complex with low folate and get back to you. Shout me if I don't
Redrow I've found a very nice B Complex with 250mcg folate instead of the 400mcg in the Thorne and Jarrows. It's a very good brand, with good bioavailability
The only supplements I take are cod liver oil capsules, bitter melon capsules and cinnamon capsules, last two for diabetes management. I haven't had an iron injection.
Thank you for the link to B complex, will have a good look tomorrow.
Regarding the gluten I am doing the lchf regime so I do not have any bread, potatoes, rice or pasta,anything with far too many carbohydrates, lost over 3 stone and blood glucose is 2 points from remission.
You are very knowledgeable about the thyroid, are you in medical practice?
No Carol, not medically trained or anything, just a long time hypo patient (40+ years) who's had to take charge of my own health because they only have donkeys at my surgery. I've learned a lot from this site, reading and research, and am quite passionate about decent supplements and get really cross about the cheap rubbish peddled as vitamins and minerals by some companies (I have a little soapbox ).
My thyroid test results were similar to yours although I had a suppressed TSH. I self sourced T3, lowered my Levo, added a bit of T3 and urine thyroid tests show my T4/T3 balance is much better. I've yet to do a repeat blood test.
Very well done on the weight loss, you must be very pleased . I have a friend who is diabetic and discovered cinnamon capsules. Her blood glucose reduced to less than 5 - I don't fully understand the numbers but she tells me that is excellent
The blood test on 19.8.15 has Serum free T4 level 29 pmol/L which says "above high reference limit". That was the only time it was mentioned.
I do not feel I am performing at my best, my 'get up and go' has left and I have to push myself to do anything. My diabetes is well controlled, two points from being in remission and I have lost over 3 stones.
Redrow Again, it's difficult to comment without a reference range so it's not possible to know how much above the range your FT was. But with a suppressed TSH and over range FT4 then for all intents and purposes your GP did the right thing. However, I have had those sort of results in the past, always TSH suppressed and always top end of range for FT4, occasionally over, and once as high as yours. However, when I did further testing - and this is where FT3 is important - I was not converting T4 into T3 very well. I'm not saying that's the case for you, just pointing out that both FT4 and FT3 are important.
Because you say "I do not feel I am performing at my best, my 'get up and go' has left and I have to push myself to do anything", it does sound as though you are not optimally treated.
Please ask for the tests I mentioned, or get them done privately through Blue Horizon. I think your answer will lie in the results and members will be able to help.
Just a little tip , if you want the person you are replying to to be notified of your response, you need to click the green Reply button directly under their message, within the message box. That way an alert is sent to them so they know you have replied. Also an alert is sent if you mention them by putting @ in front of their user name (no space between @ and the name). Either way you'll know they will have received notification of your reply, otherwise they wont know about it and these threads soon disappear off the main page.
Redrow They send everything you need, two or three lancets to prick your finger, a microtainer and little funnel to enable the blood to drip down into it. I think it might be about 3-5 ml of blood (it's been a while since I did mine). Full instructions come with it including full packaging to send it back. You can always ask on the forum for tips on best way to do it if you're uncertain. The results are emailed to you within a couple of days. It's an excellent service
Saw Doctor this morning and again she thought I was there to discuss diabetes, it really annoys me and numerous other people with diabetes that all they want to discuss.
I know she hadn't even looked at the results that I gave to the surgery because when she looked at the sheet I gave her she asked why I had a private blood test done and was told that different labs use different chemicals so the these results might be different had I had them done by the surgery. She said my Vit D was OK, there's nothing that can be done about the anti-bodies, my TSH is fine.
Then she went on to discuss my diabetes, she said it wasn't controlled as it was too high in 2014. I argued and said it's OK now and she then agreed. That's the trouble with having diabetes everything revolves around that. She said that my tiredness could be my diabetes (I am 2 points off being in remission)
She has agreed to a blood test to check B12, Vit D and Folate appointment on Wednesday and to test TSH in 6 months.
".......that different labs use different chemicals so the these results might be different had I had them done by the surgery."
Oh....... big sigh....... what a load of baloney!
Blue Horizon is (or uses) an accredited lab, same as the NHS. The ranges might be different but I doubt whether they use different chemicals to do the tests. The only difference would be the ranges and your result appertaining to that range, you would probably still be the same percentage through the range whatever it was. They do talk such rot at times, it makes you wonder where the do keep their brains! Or perhaps they just like to think they're baffling us with science and because we're just 'patients' we wont understand.
She said my Vit D was OK Yes, well she's saying that because you're not in the 'severely deficient' range. But you're not in the replete range either which is usually 75-200, and you're certainly not optimal. Your Vit D test that she is doing will come back with a similar result so you wont get any help from her with that. Just do as I suggested in my post further up, get your own D3 and K2-MK7, also magnesium is another co-factor so you should get some of that as well. Take the D3 and K2 with dietary fat as they're both fat soluble, the fattiest meal of the day is fine. Take magnesium at night as it is calming.
....there's nothing that can be done about the anti-bodies Not from their point of view as Hashi's isn't treated, it's the resulting hypothyroidism that's treated. But you can help yourself as mentioned, 100% gluten free, also supplementing with Selenium.
.....my TSH is fine Yes, your TSH is in a good place, it's the FT4 and FT3 that's the problem. The T4 isn't converting to T3. I can understand retesting TSH in 6 months but I would also push for FT4 and FT3 to be tested, they are vital as can be seen from your Blue Horizon results. You could go back and ask about those two tests now rather than wait lsix months. Your GP may not know anything about conversion but a good endo should and may suggest adding some T3. So you could push for that, either now or after your next test. Or you could decide to take control and self-source T3 and add some to your Levo and see how it goes.
What about your B12 result? I can see that your GP is testing that for you but has she not taken any notice of that? It is very low, I don't know if it the GP's test will come back low enough for injections or further investigations. I would pop over to the Pernicious Anaemia Society's forum here on Health Unlocked and take advice from them. It could be that supplementing as suggested is enough, but it may need looking into further. They will give you much better advice on that than I can.
I know how you feel about feeling like you're wasting your time. I've had it, I get it, I don't bother with them any more regarding my thyroid. My GP knows zilch about it, and I refuse to see another endopig after my original experience.
Redrow, in future, when posting, give all your results, with the ranges. Otherwise people will just be guessing when they try to help you. All details are important.
TSH is NOT a thyroid hormone and as such if you are not suffering the symptoms of Hypothyroid then it can be ignored. Tell your GP that you are happy on your current dose and repeat it as often as necessary as some doctors won't accept it. I personally use the broken record method with my endo who wants to reduce my meds this consists of repeating over and over that I am fine on my current levels. Demand a thorough examination rather than just blood tests.
My ears itch like crazy in allergic response to the chemicals in certain products. Processed pork products such as ham, bacon and gammon are the main culprits - and I usually get a sore throat with these as well - but there are many products that cause this problem for me. However, they rarely weep, so I would think there is likely to be a bit of an infection there.
Had another blood test and saw a different doctor today, Latest blood test:-
TSH - 0.27
T4 - 24.2
T3 - 4.0
He has reduced Levo to 100mcg from 125mcg and to see him in 4 weeks time with another blood test. He told me that my Vit D and B12 are in range so I don't need supplements. I will get my own. Will see what happens in a month.
I am assuming those are your NHS test results. I've looked back up the thread and can only see a range for the TSH - 0.3-5.5 - is that right? So your TSH at 0.27 is slightly under range.
What are the ranges for FT4 and FT3, they won't be the same as Blue Horizon's I expect. It would help if you could always put the range when giving test results, saves any confusion or searching back in other posts
I'm guessing your FT4 is a bit over the range, or at the very top. But your FT3, I guess, is again low in range. We're back to the problem of your conversion being poor and the need for some T3 to be added.
I can't see that it's been mentioned in this thread so this information may be helpful for you to take and discuss with your GP.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, wrote this in a Pulse Online magazine article:
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
If you email louise.roberts@thyroiduk.org.uk she will let you have a copy of the article which you can print out and show your GP.
So hopefully that may stop your GP playing yo-yo with your dose of Levo. But that doesn't help your conversion. Until you get a decent level of T3 hormone and a FT3 result in the upper quarter of it's range then you won't be optimally medicated. T3 is the active hormone needed by every cell in our body.
I know you are already gluten free, but what about supplementing with selenium? That helps reduce antibody attacks and it also helps conversion of T4 to T3. 200mcg of L-Selenomethionine form of selenium is about right.
I think your GP is being a bit negligent about your B12, the low level in your BH test, along with their comments, should have rung alarm bells. What was the result of your GP's B12 test? Did you pop over to the Pernicious Anaemia forum here on HU for further advice? You could very well need injections and you can actually buy them yourself, you'd get better advice on the PA forum.
It's best to wait 6 weeks for the next blood test, 4 weeks is too soon. There will still be some of your current dose of Levo remaining, not much but it does take 6 weeks for any change to have full effect.
T4 24.2 pmol/L (10.0- 19.8) Above high reference limit
T3 4.0 pmol/L (3.5- 6.7)
Levo reduced to 100 mcg from 125 mcg and he said he might lower it further after blood test in 4 weeks time.
Doctor said my Vit D and B12 were in range so he will not prescribe.
I have purchased some Ultra vitamin D D3 1000IU (25ug) so will start taking them tomorrow morning. I am going on holiday next Tuesday and on my return will order some BioCare Methyl B Complex - 60 Vegicaps.
I am going to start taking the Levo last thing at night, I was never told what time to take them so have taken them with the rest of the medication just before breakfast.
Regarding selenium, I am already eating foods high in selenium, so perhaps I am having enough.
So your latest thyroid test results from your surgery do show what I thought.
Your FT3 is far too low for you to feel well.
It doesn't matter what your TSH is, once you are taking thyroid hormone your pituitary doesn't have to send signals any more to stimulate your thyroid to produce the hormone as you're providing it synthetically so we can disregard TSH (don't expect your doctor to agree with that).
Your FT4 is over range by quite a bit so there is plenty of T4 sloshing about but it's not getting converted into the active hormone T3 which is why your FT3 is so low. It's a bit like my results were (but my FT3 was a bit higher in it's range than yours). I lowered my Levo and added in a bit of T3 and that's what I think is needed for you. You would need an enlightened endo to do that, your GP wont. This is where the Dr Toft article can be your friend - email Louise for it, print it off and take it to your GP. If he wont do anything ask for a referral to an endo and you can show the article to the endo.
You really do have to take this into your own hands now if you want to be well, you have to stand up for yourself because your GP is doing you no favours and keeping you ill. If he reduces your Levo it will probably increase your TSH a bit (which is what he will want to see), it will decrease your FT4 (which is what he wants to see) and he will keep reducing your dose until he sees a TSH he likes and FT4 within the range. He will totally disregard the FT3, even if it goes to the bottom of the range. When I was being seen by an NHS endo, he kept reducing my dose to get TSH and FT4 in range, my FT3 was 2.8 in a range of 2.8-7.1. I was a walking zombie, did he care - not one jot, my TSH and FT4 were in range so everything was perfect! My enlightened GP disagreed with him and raised my Levo to get my FT3 back up and was happy to accept a suppressed TSH and top of range FT4. Unfortunately she retired and I now have a GP who thinks like the endo hence taking things into my own hands.
FT3 is THE most important result. T3 is the active hormone, needed by every cell in our body, it needs to be in the upper quarter of the range so that's about 5.9. This is what Dr Toft's article is saying - the TSH can be suppressed, the FT4 can be over range but FT3 must be in range. You need to get this through to your GP. If he wont go along with it then insist on a referral to an endo but it must be a thyroid friendly endo not a diabetes specialist. Louise has a list of thyroid friendly endos so again, email her for the list, choose one or two you might be able to get to, ask on the forum (in a new question) for any feedback from members about the chosen ones, then ask your GP for a referral to that one.
If you can't get any help with T3 from your GP or an endo then you'll have to consider self sourcing T3 and self treating by adding it to your Levo. Members can help with that.
What selenium rich foods are you taking? If it's brazil nuts then they have to be grown in selenium rich soil. If the packaging doesn't mention this there is no guarantee that there is much selenium in the nuts. The most accurate way is to supplement.
Is this the Vit D you are taking vitabiotics.com/ultra/vitam... ? If so, you're not taking enough at the moment. I suggested in a post further up
Vit D - 65. Really could do with being 100+. You can supplement with D3, I think probably 5,000iu daily for a month might be enough then a maintenance dose of 2,000iu daily.......... When taking D3 we also need K2-MK7. Vit D aids absorption of calcium from food and K2 directs the calcium to bones and teeth rather than soft tissues and arteries.
You should be aiming for 100-125. Do you take your D3 with dietary fat? I prefer D3 softgels as they tend to come with purely D3 and extra virgin olive oil, nothing else (your tablets are full of fillers), and the olive oil helps with the fat needed for D3 to be absorbed. This is the one I used bodykind.com/product/2463-b... And are you taking K2-MK7, it is essential for directing the calcium away from soft tissues and arteries. Magnesium is another co-factor when taking D3 so that's important too.
The Biocare B Complex is a good one, I know someone else who takes that. The Folate in that will be fine for your folate result.
Your B12 needs some serious supplementation. Here are a couple of articles about B12 deficiency
As I said, the Pernicious Anaemia forum on HU is your best bet for advice, you may need injections, if not then you must get some sublingual methylcobalamin lozenges - Solgar or Jarrows 5000mcg and supplement with those for a few months then reduce to 1000mcg for a maintenance dose.
It's fine to take your Levo at night, I take mine in the early hours of the morning when I need the loo as it keeps it well away from all supplements.
Do you really mean to get two types of Vit D3? With your Vit D level at 61 then you need 5000iu daily for a few weeks then either 5000iu alternate days or 2000iu daily. If you are thinking of starting off on the 5000iu Doctors Best then don't bother buying the Viridian 2000iu also, it's just wasting your money, use the Doctors Best on alternate days instead.
The other supplements are fine.
What about B12?
Take B vits in the morning, no later than lunchtime as they can be stimulating. Take D3 and K2 with dietary fat. Even though the Doctors Best D3 has olive oil, I still take it with a full fat yogurt or cracker and butter or a meal containing fat. If taking K2 at the same time as D3 they both require fat for absorption.
Selenium is probably best in the evening.
I can't see that I have mentioned it but magnesium is another co-factor when taking D3 and that is best taken in the evening as it is calming. Best and worst forms here naturalnews.com/046401_magn... see which would suit you best.
SeasideSusie Sorry I haven't got back to you for a while, it's taking a while to get my head around this subject. Had another meeting with GP on 12th October and he knows sweet FA about thyroid. I know more about it than he does. He has suggested that I see an Endo at Queens Medical Centre, Nottingham, I pointed out that if they adhere to the NICE guidelines I will be wasting my time but he said try it 'with a wink' me thinks he has been discussing this with someone else, He is giving them my blood test results from Blue Horizon. He couldn't refer me to one of the Endos on the list that Louise sent me as they do not have a contract with them, the nearest one being Birmingham. I am going to phone the department next week to see how long I am going to wait. If I go private do you have any idea how much it is going to cost?
I have decided that I am not going to take anything to aid my thyroid function in case it impacts the results. Am I right?
I am going to order this lot, have I done it right this time?
Vitamin D-3, 4000iu x 30 Tabs
BioCare Methyl B Complex - 60 Vegicaps
Doctors Best MK-7 featuring MenaQ7 - Vitamin K2 - 60 x 100mcg Vegicaps
Doctors Best High Absorption Magnesium Chelated - 240 x 100mg Tablets
Jarrow Formulas Vitamin B-12, MethylCobalamin, 5000mcg x 60Loz
I did post on the PA forum but they didn't seem to give me any help.
Thank you so much for all your help, I am very grateful.
Do you mean going private to see that endo to reduce the wait time? That could be a good idea as then you'd get to see 'the man' rather than taking pot luck and maybe seeing one of 'the team'. But you'd want to know that there's a good possibility of treatment to suit you rather than being fobbed off with 'the TSH is all we go by' line otherwise you'll be wasting your money.
Charges vary. In the last couple of years my son has seen a neurologist privately (due to the 9 month wait and a possibility of a brain tumour) and it was around £200-£250, not sure how long the appointment was. I saw a breast specialist and the charge was £160 for a 20 minute appointment, and more recently a lung consultant and the charge was £260 and I was with him for close to an hour. They all have their own set charges, you can ask when you call if he does private appointments and maybe get his secretary's number so you can check where you could see him and what the charge would be. It's normal to get an appointment very quickly, within a couple of weeks I would think. After my lung appointment I just asked if I could now be transferred to his NHS list and he was fine with that.
Your supplements look fine and yes, maybe hold off starting them if you're seeing the endo privately.
Just a thought, your endo will probably want up to date blood tests. It would be best if you could persuade your GP to let you have them done at the surgery a few days before your appointment, that way you can get them done at their earliest appointment (don't forget fasting, water only, from previous evening and no Levo for 24 hours), get a print out and take them with you when you see the endo. Much better than risking an afternoon appointment and blood being taken then which would give a very different result.
Sorry you didn't find the PA forum helpful. I don't use it but it seems the most logical place to ask about low B12.
SeasideSusie The Endo that the GP referred me to was a waste of time because he wouldn't see me as he had to go on NHS guidelines. So I paid privately and questioned his secretary beforehand so check that he would prescribe T3 and was assured that he would. Again, in my opinion, he was a waste of time and money £225.00. He felt my neck and said that I probably had no thyroid left (good that a diagnosis is so easy!) He wanted to know why I had stopped Statins as my .cholesterol was now high (didn't give me any confidence at that point), I told him that it raised my blood glucose levels. He then went on to talk about diabetes and I moved him on from that as my diabetes is well managed. He didn't believe my weight loss (nearly 4 stones lost) and told me that I must have been very obese (I was size 16 clothes). He did weight me. He told me my Vit D and B12 were fine and didn't need supplementing. Back to the thyroid, his suggestion is that I stay on my current dose 100mcg for three months and then go back to see him (another £225), he will write to my doctor to tell him that. Be interesting to see what my TSH (as that's all they measure) is at my next blood test in December. All I got out of that was a 'free' cup of coffee and a depleted bank account.
Redrow Hi Carol. I'm sorry this appointment didn't go well for you, what a waste of money especially after you got the impression from your GP's 'wink' that you might get somewhere
Your cholesterol will be high because you're not optimally medicated thyroid-wise. Once that's sorted my guess is that your cholesterol will come down. It's not the first time I've heard about a doctor saying they don't believe the patient, your weight loss was a big achievement, why would you lie about it? And again he shows the medical profession's ignorance regarding vitamins minerals and their importance where thyroid health is concerned. They really have no idea. It really was an expensive cup of coffee.
What are you going to do now? Will you go back and see him? Are you willing to take your thyroid health into your own hands?
Because I've done it this is easy for me to say. Do a new blood test with Blue Horizon to see what your thyroid levels are like now. If you want to confirm your conversion problem then do a Genova 24 hour urine T3/T4 test to see what is actually getting into the cells. Depending the results, if poor conversion is confirmed then self source T3 and start gradually adding it.
You can keep an eye on your levels by just doing the basic thyroid test (TSH, FT4 and FT3) which is cheaper than the whole bundle, and be guided by that. I've also done a couple of follow up urine tests to make sure things are going in the right direction and I don't think I need to do any more, I just need to keep an eye on FT3 now to keep it in range.
It's a big step, a scary thought, so only you can decide. But I honestly think that your GP and this endo will keep you ill.
SeasideSusie Thanks for your reply. I will leave it three months and see what happens, then decide whether to go back to him. I have looked at self-sourcing T3 but they all seem to require a prescription from GP, any ideas where I could get this?
My diabetes results are 'normal' as in not at diabetic levels and I now weight 8st 10lb. I have stopped taking Bendroflumethiazide for BP as the leaflet said - DECREASED CARBOHYDRATE TOLERANCE and as a diabetic that is the last thing I need. Consequently my BP was measured at 134/70 which the GP is not happy with, still taking Losartan 25mg for BP. I told him that having an untreated thyroid would raise my BP and cholesterol, he told me that I was very knowledgeable, more than he is I suspect. I asked why I couldn't get treated for the thyroid but they are willing to give me medication for BP and cholesterol, fix the original problem and the others will go way. I have an appointment with him on 8th March but I know I'm not going to get anywhere with him.
How strange that they tested for FT3 and didn't do FT4. Anyway, your TSH is in a good place but your FT3 isn't. It's a good thing they've tested FT3 really because, as mentioned before, that is the most important one and again it's barely in range. Looking at your previous result when you were on 125mcg Levo your FT3 was 4.0, so reducing your dose to 100mcg has, as expected, reduced your FT3 and increased your TSH.
I can only repeat what has been said before about Dr Toft's article (mentioned in one of my posts above, did you ever email Louise for a copy?), where he says TSH can be suppressed and FT4 over range as long as FT3 stays within range. You are going to have to work on that. Show him the article. If he doesn't agree then you have a choice, stick with what they are doing or start looking after yourself. Maybe you could mention that if they not going to help you then they leave you with no alternative but to self medicate as you can't live the rest of your life in such a state of unhealth.
SeasideSusie Sorry for not replying earlier, been a bit busy tonight. I have the e-mail from Louise and have printed it out. Will write everything down and give it to the GP with the print-out. Easier than trying to remember everything.
SeasideSusie You must be fed up with me by now, if so I am sorry . I have decided to bite the bullet and order myself some T3, do I buy the 25mcg or the 100mcg? How much should I take and when? I am not due to see the GP until 8th March but he won't know anyway so I am asking someone who knows - you.
Redrow T3 needs to be started at a very small dose, usually 5mcg or 6.25mcg depending on whether T3 is prescribed (20cmg tablets) or self-sourced (25mcg tablets). I don't know where you've seen 100mcg tablets of T3 but the couple of recommended, reliable suppliers used by members only sell the 25mcg ones.
It's not possible to say how much T3 to add (other than to start with a quarter of a tablet) or how to tweak your Levo until you've got a current blood test that shows both FT4 and FT3 done at the same time.
SeasideSusie It's me again. Got my T3 yesterday and the insert is all Greek to me, literally. Do I take just one quarter of a tablet a day? In the morning with the Levo? How long should I wait before I have a blood test?
Redrow Start with one quarter of a tablet, 6.25mcg. You can take it with your Levo, same advice applies - on an empty stomach, one hour before or two hours after food and away from supplements.
See how you feel and increase to 12.5mcg in two weeks - some people take 6.25mcg in the morning and 6.25mcg in the afternoon or evening or at bedtime, you might have to experiment. I took mine in divided doses but found it hard to fit everything in so decided to try it all in one dose and I didn't find any difference. We're all different.
Hold at 12.5mcg for 6 weeks then re-test to see how things are going. Make sure your next test includes FT4 and FT3.
SeasideSusie Thanks very much. I have a GP appointment on 20th March and I will inform him that I have started to help myself. I am prepared for him to say that they won't test me so I will pay for it myself.
The thyroid stimulating hormone (TSH) level is low. If you are already taking thyroxine, dose adjustment may be necessary - you should discuss this with your usual doctor. If you are not taking thyroxine, it would be wise to keep an eye on this level - either by reference to previous results if known or by checking TSH again in 6 months time or so. There is a possibility that hyperthyroidism (overactive thyroid gland) will develop if the TSH fails to rise (a low TSH implies excessive thyroxine production from the thyroid gland). Although the total thyroxine level is high, the most useful levels to know for checking thyroid function are TSH and free thyroxine (FT4) levels.
The positive thyroid antibody result, increases the possibility of your having autoimmune thyroid disease, such as Hashimoto's thyroiditis or Grave's disease.
It would seem to me that taking T3 has made things worse if I have to increase the dose of Levo (taking 100mcg at present).
You haven't mentioned the most important thing - how do you feel?
First of all, I wouldn't take much notice of BH's comments regarding thyroid tests, they are standard, generic comments and not targeted at the individual's specific circumstances which, of course, they don't know.
Where does it say that you should increase your Levo? I can't see that anywhere. Even with their generic comments, with a low TSH they wouldn't be recommending an increase in Levo, they would be recommending a reduction which is what they mean when they said:
"The thyroid stimulating hormone (TSH) level is low. If you are already taking thyroxine, dose adjustment may be necessary"
TSH: 0.22 (0.27 - 4.20)
T4 Total:125.1 (64.5 - 142.0)
Free T4: 21.34 (12 - 22)
Free T3: 4.59 (3.1 - 6.8)
Your total T4 is fairly high in range, giving a top of the range FT4 and even though you are taking T3 your FT3 is still quite low in range.
If you feel well then you don't need to change anything. You already know that low TSH isn't important, it's FT3 that is the important result. Your FT4 is in range and your FT3 is 40% through it's range. If you are still symptomatic then it's FT3 that needs increasing and you do that by adding more T3
If those were my results and if I was symptomatic (and this is not medical advice because I am not trained, this is merely my suggestion based on what I would do in your situation) I would tweak your doses. I would add another 6.25mcg T3 to get your FT3 up and I would reduce Levo by 12.5mcg if you can cut your tablets up. I wouldn't suggest reducing Levo by 25mcg all at once because I've recently done that and it made a massive difference to me, my FT4 plummeted to bottom of range and I have suffered debilitating fatigue and brain fog, from which I am trying to recover after increasing my Levo back to where it was.
I would hold at that for another 6-8 weeks and retest, see where your levels are then.
Are you addressing the Hashi's by being strictly gluten free and supplementing with selenium as previously mentioned?
Your antibodies don't really need testing again, so your next test could just be BH Thyroid Plus Three - TSH/FT4/FT3 unless you want to check on vitamins and mineral levels at the moment.
SeasideSusie I am sorry to keep bothering you. Had telephone appointment with GP but he wouldn't accept my Blue Horizon result and I am having blood taken tomorrow morning.
I am having trouble taking my Levo & T3 an hour before food or 2 hours after as I am rather busy looking after my young grandson and husband. Would it be OK if I take them when I go to bed as my stomach is empty then?
Redrow Many members find that taking their Levo at night works better for them than taking it in the morning. I take mine in the middle of the night when I need the loo so that can be any time between 2.30am ish to around 6am ish. I take my T3 before I get up and it's usually a good hour or more before I eat or drink anything other than water what with washing/showering, feeding the dog/cat, etc. I can't take my Levo at bedtime as I am an evening snacker!
As you are having blood taken at your surgery tomorrow, don't take any Levo tonight, you want 24 hours between last Levo dose and 12 hours between last T3 dose and blood draw. Fast overnight but you can have water. Hopefully you have a very early appointment.
Hopefully you will also get FT3 tested. Don't let your GP reduce your dose on TSH alone, as long as your FT3 is in range and you feel OK then you won't be over medicated.
I went with your last suggestion and with the agreement of my GP reduced my Levo to 100 & 75 on alternative days which was his suggestion. I am now taking 1 x T3 per day.
These are results from blood test taken on 26/7/17:-
Thank you for your reply. I felt fine until my 21month old Grandson gave me his virus, he spread it around, his Dad, his other grandparents and me. My OH didn't get it neither did my DIL.
Surgery phoned this morning and said that a GP, not one I've met before, wants to discuss my medication, bet it's thyroid meds.
I can't understand why, if I have an under-active thyroid, taking less Levo is beneficial surely that should reduce my T4.
It all depends where we each feel best as an individual, we have to find that level ourselves. If we're self medicating we have that freedom but if our meds are prescribed it can be a battle with our doctors.
I am prescribed Levo and self medicate T3. I have been dodging surgery requested thyroid tests for three years and do my own. I request my Levo prescription as normal, but don't actually take as much as is on my records.
Recently I was taking 100mcg Levo plus some T3, my FT4 was similar to yours, about 19 and FT3 in the upper part of the range. Because I'm trying to lower high rT3 I reduced Levo to 75mcg, T3 stayed the same, thinking I might soon increase the T3 to help reduce the rT3. Within a couple of weeks I started to feel unwell, ended up feeling absolutely dreadful and when I retested after 6 weeks my FT4 had plummeted to 12.8, FT3 had also dropped a fair bit. So I discovered that regardless of taking T3 I still needed a reasonable dose of Levo, and there is some conversion going on, and needed FT4 in the upper third of range. It's not where everyone would feel best, but it seems to be right for me. I increased my Levo back to 100mcg and never did increase the T3.
So you need to find what's right for you. In my opinion, you don't need to reduce Levo but I would reduce T3 slightly and see how that feels.
If your GP only sees your NHS results, then with your FT4 at 17.5 pmol/L [10 - 19.8] if he wants to reduce your Levo then you can always show him the Pulse article by Dr Toft which I assume you emailed Louise for a while ago as was suggested further back up the thread. So you can argue to keep your Levo at the same dose and reduce the T3 you are self medicating with (presumably without your GP's knowledge??)
Thanks, another GP knows that I am taking T3 and was completely on board with it. I will reduce my T3 to 3/4 but leave the Levo as it is. It's my body so I will do what I like. By the way, I'm not crowing but back in Feb 2015 I weighed 13st 1lbs, at the surgery on Wednesday my weight was.......................7 st 12 lbs and my T2 diabetes is in remission. I'm not cheering either.
SeasideSusie Hello, long time since we last corresponded. I am asking an unusual question.
My weight seems to be rising, I was 8s 2lbs in February and I'm now 8s 9lbs. I definitely haven't changed my diet so it isn't anything to do with my eating regime. Can my TSH level being too low have anything to do with this weight gain. I have another blood test for 7th June, the earliest appointment I could get. Had telephone appointment with Dr this morning and he said weight gain has nothing to do with the thyroid??
My last blood test on 28 Feb 2018 reads:- Serum free triiodothyronine level 6.4 pmol/L [3.5 - 6.5] Serum TSH level 0.2 miu/L [0.5 - 4.4]
Below low reference limit
Please note new reference range for TSH, FT3 and
FT4 as of 05/12/17. Serum free T4 level 16.8 pmol/L [10 - 20]
What doses of Levo and T3 are you currently taking?
When did you take your last doses before the blood draw?
Your FT3 has reduced quite a lot.
Your TSH will be low/suppressed because you're taking T3. Mine has been suppressed for as long as I've been recording my results, over 20 years. To get my TSH into range I have to reduce Levo down to a level where my FT4 is barely in range and I can't function so I wont reduce my meds just to satisfy a number. Personally I'm not worried about it but the doctors don't like it.
Sorry I knew I'd forget something. I am taking 75mg of Levo and 3/4 tablet of 25mcg of Tiromel. I have noticed recently that I am losing more hair and my fingernails are very brittle and ridged bottom to top.
Did you leave 12 hours between your last dose of T3 and the blood draw - or more?
If you left 12 hours then if you haven't changed your dose of T3 since the previous result of 6.4 then why has it lowered so much? There is little difference in your TSH and FT4.
I would say with your current FT3 level then you could afford to try an increase in T3, say a full 25mcg, and see how that goes.
Are your nutrient levels optimal?
Are you gluten free and supplementing with selenium for the Hashi's?
Yes, I fasted. Am gluten free and supplementing with selenium and magnesium. Still eating low carb/healthy fat. Diabetes now 'in remission' Weight 8st 8lbs. Still don't understand why my weight has increased. Will increase T3 to one tablet. Should have another test at the end of July.
When did you take your last dose of Levo and T3 before the blood draw - at the recommended times - Levo 24 hours and T3 12 hours before blood draw?
You do apppear to be taking too much T3.
As your FT4 is less than half way through range, I wonder if you are like me and may be better with it higher in the range. In which case you could reduce your T3 to 3/4 of a tablet and slightly increase your Levo which would raise your FT4.
25 OH Vitamin D 87 nmol/L 50 - 200
Are you supplementing Vit D? It needs to be between 100-150nmol/L.
Are you supplementing B12, if so drop it down a bit.
Folate and Ferritin look OK.
I wouldn't waste your money on testing reverse T3 in the future. You''d normally see that high when FT4 is very high and FT3 low, and you're taking T3 so rT3 is unlikely to be a problem.
400iu isn't a maintenance dose, 800iu is barely a maintenance dose when level is optimal. Personally I would use 2000iu for a couple of months and retest, then when at the recommended level 1000iu may be enough to maintain it.
I have recently retested Vit D as I have been getting some bone pain in my lower leg, something new for me. I've been taking 5000iu 3 times a week, my level has decreased to 104, I'm increasing mine to 5000iu 5 times a week as I want my level back up to 150nmol.
Are you taking magnesium and Vit K2-MK7 as cofactors of D3?
Do you take a B Complex? You might find that if that contains something like 400mcg methylcobalamin then you may not need a B12 now, or just a couple of times a week. My B12 got up to 1500. I just take 1000mcg twice a week, then a B Complex 5 days a week.
I am taking 75mg Thyroxine and 3/4 tablet of T3. Doctor wants to see me, next appointment 15th October. Any ideas what she could want to see me about, is there too much wrong with these figures. If I drop T3 to half a tablet will that leave me too low?
She probably wants to see you because your TSH is below range and your FT3 above range.
Does your GP know you're taking T3? If so then she should know that taking T3 can lower, even suppress, TSH.
YOur FT4 is just over half way through range so there's no problem with than. You might want to reduce your T3 slightly to bring that within range, that's all that would need to be done.
BUT when did you take your last doses of Levo and T3 before this test?
Didn't take any the day before. With the T3 I could have 3/4 tablet and alternate day have 1/2 but then my T3 numbers could drop too low. I hate this under-active thyroid it causes me more problems than having diabetes (which I have controlled and have non-diabetic numbers, which doctors don't seem to understand)
You leave off Levo for 24 hours and T3 for 8-12 hours before testing. That way you get a result for the normal circulating hormone in the blood. Any longer and you get a false low, too close to the blood draw and you get a false high. So as you didn't take any the day before - how many hours is that? Certainly more than the recommended 8-12 hours for T3 so you have a false low FT3, your actual FT3 result for normal circulating hormone is higher than 6.9 which can suggest you're taking too much T3.
You can't alternate the amount of T3 you take, it has to be the same every day, it's not a long acting hormone like Levo (which is more of a storage hormone, some of which converts to T3 the active hormone), T3 is a much faster acting hormone.
If your GP suggests altering your doses, I think you should say that you messed up, left off your Levo and T3 for XX before the blood test, and would like to repeat them to get an accurate result. Then make sure that for your next test you leave the recommended times between last doses and blood draw.
I realise what I have done with Vit D. I have been taking OH vitamin, I must be run out of 1000iu. I will now order some Vit d 1000iu. We have a whole shelf in one kitchen cupboard full of medications. OH has Parkinsons so there is a lot of bottle and packages.
I take:-
Selenium 200mcg once a day
Chelated Magnesium 133mg 3 times a day
Vit K2 MK-7 100mcg once a day
Vit B12 every other day ( will reduce this to once every three days)
When new order comes Vit D 1000iu once a day.
I've now realised that I have run out of Methyl B Complex so will order that as well.
I also take Bitter Melon & EasyBetic containing GTF Chromium, Magnesium & Ceylon cinnamon (for diabetes)
I am still having problems. My GP has reduced my Levo from 75mcg to 50mcg because:-
26/7/18 TSH 0.03 (0.5-4.4) Taking 75 mcg Levo
T4 16.3 (10-20)
T3 8.6 (3.5-6.5) (taking 3/4 tablet)
20/9/18 TSH 0.04
T4 15.5
T3 6.9
5/12/18 TSH 0.17
T4 19.4
T3 5.5
6/3/19 TSH 6.6 Taking 50mcg Levo
T4 13.0
Didn't measure T3 for some reason.
What the hell is happening with my body?
When I queried these last results with the surgery I was told that the results are OK, no further action. Doctor is telephoning me on 8th April as I am not accepting 'no further action'.
Presumably your Levo was reduced after these results due to low TSH and over range T3?
Does your GP know that you are taking T3, so that he understands how to interpret the results?
6/3/19 TSH 6.6 Taking 50mcg Levo
T4 13.0
Didn't measure T3 for some reason.
If your GP knows you take T3 then it's essential that FT3 is tested.
Why no further action if TSH is over range? Your GP should know that TSH needs to at least be in range, even if he doesn't know it should be in the lower part of the range.
I take my meds about 11.30pm and didn't take them before my blood test.
Does this mean that you normally take both Levo and T3 at 11.30pm?
What time did you do the blood test?
Did you leave them off the night before your test and and had an early morning test, so the gap between Levo/T3 and blood draw was possibly about 33 hours?
Did you eat or drink anything other than water before your blood test?
Do you take a B Complex containing Biotin (B7) or take a Biotin supplement? If so did you leave it off for 7 days before the blood test?
Another thing to take into account is that you have Hashi's, that messes with test results.
That was too long for T3 and Levo. It's been mentioned 3 or 4 times in replies earlier in this thread:
"You leave off Levo for 24 hours and T3 for 8-12 hours before testing. That way you get a result for the normal circulating hormone in the blood. Any longer and you get a false low, too close to the blood draw and you get a false high."
It is important to get the timing right.
With your latest result you have a false low FT4 at 13 (10-20)
I did have a cup of coffee, don't eat breakfast
Coffee affects TSH, always advised here is water only before the blood draw.
My B complex doesn't say it has biotin
Do you still use BioCare Methyl B Complex? If not does your B Complex mention B7? Which one is it?
Doctor does know that I take T3, can't understand why it wasn't done
He should put on the blood form that you take T3 and that FT3 test must be done. Lab shouldn't refuse, but if they do then the only thing you can do is keep an eye on your FT3 level yourself by getting a Thyroid Monitoring test with Medichecks or Thyroid Check Plus 3 with Blue Horizon and test TSH, FT4 and FT3 all at the same time.
I am still unsure whether I should be taking 75mcg or 50mcg.
With false results for TSH and FT4, then it's not possible to comment I'm afraid.
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).
hence taking things into my own hands.
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