Hi guys this is a follow up from my post about a week ago
original post:
Ok to the point: I have not been tested in years and my GP used to say to me " Good thyroid you have" is this totally wrong what he said as I have just examined my blood tests below
I have had weight gain and many other symptoms the last few year, no energy, constant daily headaches even after taking painkillers, and mental health decline, the last year has been bad
Too high for a normal healthy person. You would have a diagnosis of hypothyroidism when TSH is over 3 in another country.
FREE THYROXINE 13.9 pmol/L 12.00 - 22.00
Very low in range, but no surprise considering:
TOTAL THYROXINE(T4) 76.0 nmol/L 59.00 - 154.00
Very low in range, you are not making very much natural thyroid hormone and this is why your FT4 is showing low.
FREE T3 4.85 pmol/L 3.10 - 6.80
Your body is doing a pretty good job of converting T4 to T3 at the moment, it needs to as T3 is the active hormone every cell in our bodies need. Eventually this will probably fall the more your thyroid struggles.
Antibodies nice and low, no sign of autoimmune thyroid disease with those results.
Would this suggest I have Hypothyroidism as my T3 is toward the bottom of the scale
No, your FT3 would need to be below range, but they wont take any notice of that either. If TSH was above range and FT4 below range you'd have more chance of getting a diagnosis.
**
Serum total 25-OH vit D level53 nmol/L *Abnormal result* 75 - 200nmol/L
This is too low. The Vit D Council recommends a level of 100-150nmol/L so you really need to supplement. My suggestion would be for 5000iu D3 daily for 3 months then retest. When you've reached the recommended level then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
There are important cofactors needed when taking D3
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
This is OK. A extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
I keep mine at about 1000 as I am in the older age group.
Serum folate03 Apr 2018
You don't appear to have given the result for the folate.
I don't use NDT but have read that starting NDT should be 1/2 grain for the first week and increase to 1 grain if no adverse effects, then dose increases should be done fairly gradually and the advice I've read is to stay on 1 grain for 3 weeks, then add half a grain, stay on the new dose for 3 weeks then add another half a grain and stay on that dose for 3 weeks. So by that time you would be on 2 grains. If you need to increase further then make increases of 1/4 grain and stay on the dose for 3 weeks before further increasing by 1/4 grain, etc. This way you wont miss the dose where you feel best. Just don't rush it.
Well, timing of blood tests is important, and it's always advised to be 6 weeks after a dose change (personally I need 8 weeks for my levels to stabilise). As you are raising your dose, if you raise gradually to 2 grains, personally I would leave it at that for 6 weeks and test. Obviously if you still feel very unwell after 3 weeks on 2 grains, maybe raise by 1/4 grain and see how that goes. With NDT it's more about how you feel, and of course be aware that results when taking NDT aren't the same as when taking Levo. Taking NDT generally lowers or even suppresses TSH and lowers FT4, but as long as FT3 stays in range that is fine.
It's good that you are feeling the benefit. I tried NDT and it didn't work for me, I now use a Levo/T3 combination and that allows me to tweak the amount of T3 in relation to the T4.
NDT is not licensed in the UK so there's very few doctors who will prescribe it. If they prescribe an unlicensed medication they have to take personal responsibility and there's not many who will do that. There may be some doctors who agree to monitor a patient who self sources NDT, but I doubt there's many that even understand dosing and test results when on NDT.
early days yet of course, as you know these sort of treatments are never stabilized quickly, at least the blood results will show how i am responding with the numbers at least and 1 grain is quite a low dose isnt it?
Yes i read about 1 guy was on a staggering 380mcg of T4 and now he takes NDT 5 tabs a day feeling much better obviously he wasnt converting the T4 or similar would you agree
I suspect the same in my friend who is on 225mcg and feels crappy still
They will trial NDT themselves soon also, so I advised starting on 1 grain (stopping the levo) and moving up slowly maybe 1 or half grain at least every 2-3 weeks
Vit D wont really improve your thyroid levels but it will optimise your Vit D level and eradicate any symptoms associated with low Vit D. All vitamins and minerals need to be optimal, as I said I can't see your folate result. And there is no ferritin result either. Ferritin must be at least 70 for thyroid hormone to work, and that is our own as well as replacement hormone.
Subclinical hypothyroidism is where TSH is mildly elevated and FT4/FT3 are within range.
Have you got a recent NHS test where TSH is over 4? (I can see some of your older ones have). If you have a recent one with a level between 4 and 10 then NICE Clinical Knowledge Summary will apply:
If TSH is between 4 and 10 mU/L and FT4 is within the normal range
◾In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4 and assess response to treatment 3–4 months after TSH stabilises within the reference range — see the section on Prescribing information for further information on initiation and titration of LT4. If there is no improvement in symptoms, stop LT4.
◾In older people (especially those aged over 80 years), follow a 'watch and wait' strategy, generally avoiding hormonal treatment. If a decision is made to treat, prescribe LT4 and recheck TSH two months after starting and adjust the dose accordingly.
◾In asymptomatic people, observe and repeat thyroid function tests (TFTs) in 6 months.
Follow up of people with SCH who are started on LT4
◾Reassess symptoms on treatment. If symptoms have improved, lifelong treatment may be considered. If symptoms have not improved or if adverse effects are reported, stop LT4 after a 3–6 month trial.
◾Once TSH has normalized, TFTs should be measured at least annually thereafter.
I was looking on self treating and testing myself on T3, I know T4 (abundant) and T3 is available to purchase but I dont know a reliable source of T3 is in stock to purchased
Also my friend is long term hypothyroid and i was explaining she may benefit with T3 supplementation as she may not convert T4 well (she takes 225mcg T4) Her doctor is clueless
Why would you want to start self medicating on T3? First step would be Levo.
To illustrate this, my D-I-L was having symptoms, multiple miscarriages, etc. I knew it was hypothyroidism but GP wouldn't do anything. She went to see a private doctor who agreed it was hypothyroidism and prescribed Levo. GP of course would have nothing to do with it. Eventually had a successful pregnancy, thyroid tests done in hospital before she left, notes stated "Thyroid results satisfactory for someone on Thyroid replacement". Bingo! She had it in black and white, GP then said "I suppose I will now have to accept your diagnosis" so it was put on her records and Levo prescribed on the NHS.
It's possible that if you self medicated with Levo that it may suit you very well (many people do well on Levo), your conversion may be good enough to stay on Levo alone, and eventually something may happen like my D-I-L and you will eventually get your diagnosis recognised and on record
The actual ranges don't matter really, it's where you lie within that range. Ranges change from time to time, something to do with testing the local population for that area or something. But you can always compare your results whatever the range you just work out what percentage through the range you are each time (as long as conditions were the same each time eg early morning blood draw, overnight fast).
My local NHS lab's range for FT4 used to be 11.8 - 24.6 and it's now 7-17. I recently had NHS and Medichecks tested a couple of weeks apart. NHS result was 11.9 (7-17) and Medichecks was 16.9 (12-22) yet both were 49% through the range.
My ranges (medichecks and Nhs) were all done the same morning like 11-12pm. I only had black coffee that morning and ate probably 9pm the previous night
I think its worth speaking to the doctor and simply asking if i can trial the T4 and get retested after a given time to get the levels correct
Failing that I can start myself. What would you suggest a starting dose of T4? Ie: what would the doctor suggest
Any chance you can get a new NHS test? Whenever you do a thyroid test, always have the blood draw as early as possible, no later than 9am, and fast overnight, drink water only. That way you get the highest possible TSH. TSH is highest early morning and lowers throughout the day. It also lowers after eating. So because you need the highest possible TSH for diagnosis then follow those suggestions, you may just manage to push your TSH over 4 then you can use the NICE summary for subclinical hypothyroidism to push for a trial of Levo.
If your GP started you on Levo it ought to be 50mcg as 25mcg is usually for children, the elderly or those with heart problems.
I couldn't get the test that early and black coffee is usually considered fasting (well on my ketogenic eating it was and I always stayed in ketosis on 10-20 grams of sugars or less)
However I fully understand TSH would possibly be better on water only
Thats a 25% increase (possibly) I highly doubt my GP/s would offer me a new test for that reason. They probably dont even know about the fastest state for testing!
Oh no, we don't discuss fasting or timing of test with GPs or phlebotomists, it's a patient to patient tip. They will say it makes no difference, we know better!
And really, testing no later than 9am will make a difference to the result so it's worth the effort to make it happen.
You won't get any help from the NHS with those results.
Longer term your thyroid is probably slowing down as it does with most people. It happens to all of us to some extent, but lots of people only start getting these effects when they are say 60 and over. For you it looks like 40, for me it was early 20's (now mid 40's).
I had a TSH of 3.7 at its maximum and my FT4 was 12. I was so ill. That was aged 37. I got my results from when i was 21 and my TSH was 2.4 and Ft4 14. I was just as ill aged 21 as i was 37.
Anyway i wasn't getting any help from the NHS even though i thought i had realised it was a thyroid issue. So i just went ahead and bought my own thyroid meds and got a lot better.
I then stopped the meds and became ill after about 2 months. I was still confused what i had and so it wasn't until another 4 months later that i started on thyroid again and got much better. This time i went to see the endo and explained my ad hoc experimentation. He agreed i needed the meds because i got much better on them. Been treated ever since by the NHS. However, getting fully better has taken a lot of perseverance because i was untreated for approx 17 years and so my system took a hammering really. Hopefully you haven't been ill for so long.
So i would get some T4 and start on 25mcg and see how you react. You may not need a full replacement dose, but instead react well to a top up dose. This could be 25-75mcg T4, i don't know, but you need to try and find out.
Always start on T4 first because many patients do well on it, but you maybe someone who does need some T3 adding and this would be the second step after you try get a rough T4 dose sorted out.
Don't know whether this will help you but when I've tried to get bloods done at the surgery then I struggle to find an early appointment. May be they save them for patients going to work after but after explaining my predicament I was told the doctors could print out a form for the hospital to so them and I can go whenever I like! May be worth asking if you can do the same.
I always ask for a form and go to the local community hospital who are open from 8 😊. I can never get an early test at the docs unless its also checking cholesterol or blood sugars and then it will still br around 9!
Yep, I saw your earlier posts and I concur with other posters that you're probably not going to get much, if any help on the NHS, however, getting tested very early in the morning can show a much higher TSH which may get your doctor on board. Every doctor is different, but we see time and time again that they won't start treating until they see a much higher TSH, some doctors won't agree there's a problem until it goes above 10!
I am sure the reasons are many and varied, but one of the biggest has to be that a patient gets free prescriptions for everything for life as soon as they are diagnosed with a thyroid issue.
If you don't have recent results for your TSH, FT4 and FT3 from early in the morning, prior to eating and prior to taking any meds, and it's a struggle to get your local blood services to book you an early appointment, it sometimes helps to get a fasting test included and push for the earliest appointment indicating that you struggle when you haven't eaten for a long period of time.
Alternatively, do a finger prick test just for TSH, FT3 and FT4 because they do not need a venous blood sample and you can do it as early in the morning as you like.
TSH is subject to circadian variation and is usually highest at about 6am and I did see a study which indicated that the mean variance can be as much as 140 percent! If you can do an early morning finger prick test, you may be in the range at which you would be able to get your Doctor to listen.
I personally think your T3 level is low and I certainly don't function well unless mine is right up near the top of the range. I have not been formally diagnosed either but I know I don't convert properly, have very low tissue levels of T3 and so I am taking NDT.
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