I am currently diagnosed with ME/CFS but like many, I am almost certain I have subclinical underachieve thyroid. For this reason, my GP will send me packing instead of trying to help me get some of my life back. My TSH seems fine but T4 is always around 10 and T3 around 2.7. I know this is not optimal and CFS patients can benefit greatly from correction. Since I cannot rely on normal doctors, I wanted to try the Thyro Gold as I see some people had amazing improvements. But I see it's very expensive to ship to the UK and then they slap you with customs charges on top. Even then they can confiscate it. Does anyone know if there is an alternative available in the UK? Alternatively, does anyone know how to persuade my doctor I should trial thyroid medication? I mean, my whole life is on the line here. I am struggling to survive and need help or I'll lose my job and my home due to being so sick.
Newbie questions and thyro gold alternatives in... - Thyroid UK
Newbie questions and thyro gold alternatives in the UK?
Nearest to thyro gold equivalent I have been told
in UK, some people have a lot of success with it I believe. I am actually a week in to using it and feel no different to using the Thai NDT I was using before for 3 3/4 years
Hi. There's a piece of this message missing where you say what it it
Yes tablet playing up, trying to do link to Metavive, trying again
the-natural-choice.co.uk/Gl...
Yippeeeeee worked 😊
will this work in the absence of any prescription thyroid meds? something to give me a little more energy..?
Have you got the ranges for those thyroid results, usually in brackets after the result. Also have you had b12, folate, ferritin and vitamin d tested? They need to be optimum not just in range.
Have a read on thyroid UK of the symptoms of underactive thyroid.
thyroiduk.org/index.html notice the related conditions include me/cfs
X
Hi, yes I've had tons of private tests but I always felt my functional medicine doc was crap and missed a lot of things. I've had my thyroid tested several times on the NHS as well since I've been sick and T4 and T3 were always near the bottom. The ranges varied on the surgery I went to at the time but I know the NHS ranges mean ef all because they may not work for the individual. I do have a lot of hypo symptoms. The puffy face was a big giveaway as until now I had no idea why I don't look like me anymore and that's been upsetting. My active B12 was very high, iron etc all fine.
It's where you fall within the ranges that matter, different ranges aren't the problem you work out the percentage in the range you're results fall. You are legally entitled to copies of your blood tests in the UK... Ring your go surgery and ask the receptionist to please print you off a copy for you to pick up next week. You could get the tests recommended on here done privately through companies via Thyroid UK
thyroiduk.org/tuk/testing/p...
The medichecks thyroid Ultravit or blue horizon equivalent cover the tests advised. Between £79-£99 depending on special offers. At least then you'd get a better picture of your thyroid health and can get informed advice on here.
It's obviously up to you and as a Fibromyalgia sufferer I know what its like to have doctors put everything down to that. My opinion only is get your tests done and put up on forum for advise BEFORE you try metavive. Vits and minerals need to be optimum not just inrange for your thyroid to function properly... Get them right first even if you feel self medicating is the only way forward for you otherwise you may even feel worse trying metavive. As I said, just my opinion.
((hugs))
Linda
I have all my tests from since I've been sick. Posted below 
Agyk
If your FT4 is bottom of range or below range, with TSH normal, low or slightly elevated this suggests central hypothyroidism which is where the problem lies with the pituitary or the hypothalamus. Not many doctors have heard of it.
I'll post some links when I can get to my main PC, if you can post results and ranges for TSH, FT4 and FT3.
Lovely thank you
Sorry for the delay, here's the information about Central Hypothyroidism but you haven't posted results and ranges for TSH, FT4 and FT3. This applies if your TSH is normal, low or slightly raised and FT4 is bottom or range/below range:
TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In Primary Hypothyroidism the TSH will be high. If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
However, with Central Hypothyroidism the signal isn't getting through for whatever reason. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).
Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed
bestpractice.bmj.com/topics...
and another article which explains it
ncbi.nlm.nih.gov/pmc/articl...
You could do some more research, print out anything that may help and show your GP.
As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before. You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email Dionne at
tukadmin@thyroiduk.org
for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.
My most recent two done were in april this year
TSH 2.02
Free T4 10.9
In 2016
TSH 1.24
Free T4 10.9 (range 12-22)
In 2017
TSH 0.98
Free T4 10.6 (range 9-19)
Free T3 2.7 (range 2.6-5.7)
Anti TPO less than 4
so T4 always a bit low
I currently also have elevated ALT measured twice in the last month and rose again the second time. I know this can be related to hypo.
I am being investigated for dyautonomia and exercise intolerance as well. Don't have money for a private functional med doc at the mo but it's something I will do at some point maybe this year.
I last saw functional med early 2018. at the time, all my vits and minerals were good.
there was one more from 2016 where my free T3 was 0.1 below the bottom bracket. i have it at home
In 2016
TSH 1.24
Free T4 10.9 (range 12-22)
Normal TSH, below range FT4 - classic results for Central. Hypothyroidism.
But the other labs have 9 as the bottom range for T4. So my current GP says T4 at 10.9 is normal. I disagree. What do you think?
Have you read the BMJ link?
Diagnostic evaluation of central hypothyroidism includes serum thyroid-stimulating hormone (TSH) and free thyroxine (T4). In central hypothyroidism, free T4 is low and TSH may be low, normal, or minimally elevated.
I'm not a fan of Wikepedia but they say
en.wikipedia.org/wiki/Hypot...
Central
If the TSH level is normal or low and serum free T4 levels are low, this is suggestive of central hypothyroidism (not enough TSH or TRH secretion by the pituitary gland or hypothalamus). There may be other features of hypopituitarism, such as menstrual cycle abnormalities and adrenal insufficiency. There might also be symptoms of a pituitary mass such as headaches and vision changes. Central hypothyroidism should be investigated further to determine the underlying cause.
So your 2016 results prove this at FT4 is below range and your 2017 FT4 of 10.6 (range 9-19) is 16% through range which, in my opinion, is low.
But GP will say my most recent results count and he’ll say I’m in range. I posted my other results below. My worry is he will refuse a referral because I’ve had so many while I try to unravel my health problem and not be palmed of with CFS-nothing we can do for you. Even last time he said no more referrals until we get something from all these other avenues I’m trying. But all these take time and it will be months or years before I know if those avenues yield anything. I desperately need to feel a bit better and soon or I won’t cope. I have to have something in the mean time while I wait months for referrals. Is it safe for me to try thyro gold or the alternative mentioned at the top?
Lenaa
But GP will say my most recent results count and he’ll say I’m in range.
My most recent two done were in april this year
TSH 2.02
Free T4 10.9
So what are the reference ranges please. I don't know if your FT4 is in range as you haven't given the range for this latest test. In 2016 you've given a range for FT4 and 12-22 and in 2017 you've given a range for FT4 of 9-19
**
Without ranges it's not possible to comment accurate on results. Can you please include them when posting results.
My ferretin is 35 (was 58 six months ago)
The range for this is usually somewhere around 13-150. This is a low result even though it is in range and with low ferritin this can suggest iron deficiency anaemia so a full blood count and iron panel would be useful to rule it in or out. As your level has dropped from 6 months ago this should have prompted your GP to wonder why.
My D3 is 244
Is this nmol/L or ng/ml?
This is toxicity territory which brings it's own symptoms.
What was your Vit D level when you started supplementing?
What dose of D3 did you take?
Did you take D3's important cofactors magnesium and Vit K2-MK7?
Have you been retesting twice a year to keep an eye on your levels which is recommended when supplementing with D3?
B12 957 done by GP recently (active measured privately nov 2017 was around 800 and I don’t even supplement).
Sorry my active B12 was 414
The range for Active B12 is usually something like 37.5-188. Are you absolutely sure the result of 414 was for Active B12?
If you don't supplement then your GP should be investigating such a high B12 level.
Folate 14.4
Erythrocyte folate in 2017 was 956
I think these are different tests so I can't comment.
The T4 range here was 9 so even tho as far as I know 10.9 is not optimal, It is within range.
D3 was nmol/L
My mum consulted a lot of naturopaths and they are adamant very high levels are needed in disease and it’s very hard to get toxic. Yes I was taking with k2mk7. I was taking around 10000 units. I stopped a few months ago so this will be much lower now. I’m not sure what it was before as I was never tested. As soon as I got sick in 2017, my mum got me D3 and k2mk7.
I’ve had full iron panel done. All fine. I started eating more liver again now so this will be up.
Yes, I always questioned my very high B12 especially as back in 2017 my methylmalonic acid was on the top end of acceptable. I did a bit of research and it is entirely possible it’s not getting in the cells and I might actually be deficient. Don’t have any way of confirming this at the moment as I’m not seeing anyone privately due to funds. The private doc back then knew eff all even when I pointed it out.
Lenaa
The T4 range here was 9 so even tho as far as I know 10.9 is not optimal, It is within range.
So in that case you present the evidence, in 2016 FT4 was below range, in 2017 it was 16% through range with FT3 at 2.7 (2.6-5.7) which was 3.2% through range, and currently your FT4 is 10.9 (9-19) and at 19% through range that is low, then this all points to Central Hypothyroidism.
My mum consulted a lot of naturopaths and they are adamant very high levels are needed in disease and it’s very hard to get toxic.
I'm not going to get into a discussion about that. I get my information about Vit D from The Vit D Council and The Vit D Society who I consider would be specialists in Vit D.
As soon as I got sick in 2017, my mum got me D3 and k2mk7.
And did she also get you magnesium? Important cofactors when supplementing with D3 as recommended by the Vit D Council -
vitamindcouncil.org/about-v...
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Articles about high B12 levels
ncbi.nlm.nih.gov/pubmed/146...
medicalnewstoday.com/articl...
* High B-12 levels may indicate liver disease, diabetes, or another condition.
* An abnormally high vitamin B-12 status can be an early sign of liver disease, diabetes, or certain types of leukemia. A doctor may use the results of a vitamin B-12 test to help form their diagnosis.
* An abnormally high vitamin B-12 status is anything over 900 ng/mL. This result may suggest liver or kidney problems, diabetes, or certain forms of leukemia.
* However, having naturally high levels of vitamin B-12 in the body may be a cause for concern, as it suggests a severe underlying condition. Doctors will aim to treat the underlying medical condition, rather than the elevated levels of vitamin B-12.
Why is your GP not looking into this, you shouldn't have to go to a private doctor for this.
So yes, as soon as I got sick I went to the functional med doc and amongst maaaaany other things, I started taking 800 mg of magnesium.
i confronted that private doc about my B12 and all she could say was "it's fine". my liver enzymes were ok at the time but I know my ALT was 70 in April this year and has gone up to 120 in May. My GP is not investigating anything. Useless. The ALT was discovered as I am being seen by exercise intolerance and dysautonomia specialists who have done huge amounts of blood work on me (I've had 13 vials of bloods taken at my first appt). I am seeing them in two weeks again to find out more (as I've just had a CPET to rule out heart or lung disease). i will mention my B12 to them as they are infinitely more competent. In fact it was an amazing feeling for them not to say "ME, nothing we can do for you" but more or less, forget ME, there is something very wrong with you and we need to find out what.
It's only normal if it is within the lab range - different labs (and machines) have different ranges and you can't use the "wrong" range to interpret results - your GP is an idiot if he thinks you can.
But I guess my point is that nhs ranges are no good for the individual. I might be in range but still sick. Esp as I have so many hypo symptoms
What exactly are your vitamin results for vitamin D, folate, ferritin and B12
What supplements do you currently take?
Do you remember to stop any supplements that contain biotin a week before any blood tests?
Strongly suggest you get FULL Thyroid and vitamin testing
You haven't had TG antibodies tested
FT4 and FT3 extremely low
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Email Dionne at Thyroid Uk for list of recommended thyroid specialists
My ferretin is 35 (was 58 six months ago)
My D3 is 244
B12 957 done by GP recently (active measured privately nov 2017 was around 800 and I don’t even supplement).
Folate 14.4
Your ferritin looks low - what's the range
Vitamin Dlooks too high. If you are supplementing you need to stop for a few weeks and retest
Have you been taking any multivitamins?
If not taken any supplements in last six months that contain any B vitamins, then high B twelve needs investigation
I'm not sure on the most recent Fe range. it doesn't have it on the sheet form the lab. I've not supplemented D for several months now. no multivitamins. certainly no B12. this is a mystery as at the time i wasn't even eating much meat!
I had the full thyroid panel done privately nov 2017 incl both antibodies and they emerge fine. But my CFS has got worse since
I don’t supplement at the moment. I used to take a lot of D3 with K2. Having a break now.
Sorry my active B12 was 414
Erythrocyte folate in 2017 was 956
As you can see I’ve had the same tests done again and again as I fight doctors to try and find out what’s wrong with me
If you have functional B12 deficiency you would very likely have high homocysteine
Suggest you get FULL B12 testing
nutris.viapath.co.uk/pages/...
amazing thank you. i've been wanting to do homocysteine but thought it was very expensive. this looks very affordable.
Suggest you test B12 more thoroughly including homocysteine and MMA
Come back with new post once you get results
Work on improving low ferritin with iron rich diet
Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption
FERRITIN
healthunlocked.com/thyroidu...
drhedberg.com/ferritin-hypo...
restartmed.com/hypothyroidi...
Then get FULL Thyroid and vitamin testing
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
20% of Hashimoto's patients never have raised antibodies
Perhaps try to persuade GP or endocrinologist to do ultrasound scan of your thyroid
healthunlocked.com/thyroidu...
For the homocysteine etc. if I ask a nurse at my GP practice, do they normally do it even if I want to send it off myself?
Highly unlikely
You can ask....a few GP practices will draw blood for you.
More likely need to get blood drawn at private clinic/hospital
Omg so I’ll have to find a private hospital to get one vial done (hard to get around with fatigue). How much should it cost?
Btw, I see the thyroid test doesn’t include reverse T3. I thought it’s very important to test it as well
No RT3 is pretty useless test
We rarely recommend it
Medichecks and Blue Horizon have list of private clinics
Nutris who do B12 May do so too
Medichecks charge £25 for blood draw
Blue Horizon a bit more
Try your nearest private clinic -ring and ask direct -might do it for £20
Guess what? Armed with a full on presentation why I feel my M.E would benefit from thyroid treatment, GP gave me levothyroxine! Even without new tests. Just based on my old low but within nhs results, my many arguments and research articles and my myriad of symptoms. I asked for NDT but she said none in this practice will prescribe that. But I think it’s a good start. I’m on 25 micrograms
Always take Levo on empty stomach and then nothing apart from water for at least an hour after.
Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
verywell.com/should-i-take-...
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
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.
Standard starter dose is 50mcg unless over 50 years old
Be aware 25mcg can make you feel worse initially
Getting bloods retested 6-8 weeks after each dose increase
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
Coffee and Levothyroxine
thyroid.org/patient-thyroid...
Could I take it say, 11am? Few hours early after eating and an hour before? Because I have severe fatigue after eating, I eat and drink coffee first thing so that I have a few hours for fatigue to pass before have to leave for work. Evening I get home 7pm, eat and go straight to bed.
Shall I stay on 25 until I feel better or increase after a week until I do feel better? She told me not to increase and re test in 8 weeks. How long should I expect to feel bad? I’m so bad I’m scared to feel worse...
Stick absolutely on 25mcg for 6-8 weeks before getting bloods tested
It takes at least 6 weeks for each dose to have effect
You could take Levothyroxine in middle of night when get up for the loo....quite a few members do this
would strongly recommend a weekly pill dispenser, especially if taking in middle of night
Night is also hard for me because I have very bad sleep anxiety. If I do any action, I will possibly be wide awake for the rest of the night. And I won’t fall asleep if I’ll be thinking that I have to take my meds in the night. Around 11 am would be ideal for me. 3-4 hrs after food and coffee and 1-2 hours before
Ok try that then - 11am
Come back with new post once you get results and ranges on Thyroid bloods after 6-8 weeks
I saw a post on thyroid madness Levo will stop working for people sooner or later because the body cannot live on conversion alone. Am I wasting my time? Btw, I don’t feel worse so far (two weeks in), so I hope that means I’m converting. Taking a bit of selenium as well.
That's rubbish
Plenty of people manage on just Levothyroxine for ever
Many manage on just Levothyroxine for decades. Often conversion gets worse after menopause
25mcg is only half the standard starter dose of Levothyroxine and frequently makes people feel worse. You need to stick on it until 6-8 weeks and get FULL Thyroid and vitamin blood tests
Make sure to get blood test as early as possible in morning and fasting and last Levothyroxine dose 24 hours before blood test.
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many people need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
Make sure to get vitamins tested too
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
Guidelines on eventual dose required is 1.6mcg Levothyroxine per kilo of weight
Ferritin needed improving. Are you eating plenty of iron rich foods
Did you get homocysteine tested?
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, so if avoiding Teva get 50mcg and 25mcg tablets
I haven’t done the other tests yet as I can’t work full time and just can’t afford it. Spending money on supplements to help my M.E.
Help with diagnosis in the UK
Chronic fatigue specialist hates Thyroid Uk and PAS
Thyroid UK to the rescue
Not sure if I should take Thyro Gold
CFS, Immunity Problems and The Thyroid??
