I have not been well on levothyroxine since I was diagnosed as hypo in 2007. Various life events have meant that I have had to ignore and push through fatigue until this year. (Thyroidism runs through the wider family.) I am so tired I cannot be bothered to get up and function (even exercise)!!
For 7 years I was on 25mcg levo and I insisted on getting it put up to 50mcg in 2014. Only this year (very recently) have my doctors increased my daily levothyroxine dosage to 75mcg at my request and I secretly alternate between 100mcg and 75mcg daily.
I have been reading this forum for about two months and have seen all your wonderful advice about supplementing with vitamins plus more.
I have just done some private blood tests (Medichecks - three types done a couple of days ago - assume Medichecks if not specified) and NHS blood tests - dates given for these, so here goes:
TSH 0.612 (0.27 - 4.2)
FT3 3.84 (3.1 -6.8)
FT4 18.6 (12-22)
Thyroglobulin antibodies 476 [<115]
Thyroid Peroxidase antibodies 160 [<34]
Serum ferritin 59 (12 - 250) NHS 29/11/19
Ferritin 97.5 ug/L (13 - 150)
Vitamin D 82 (>50) NHS 29/11/19
Folate 13.11 (> 3.89)
Vit B12 Active 93.8 (>37.5) pmol/L
Serum vit B12 420 ng/L NHS 19/6/19
HbA1c 34 mmol/mol NHS 19/6/19
Total cholesterol 6.26 mmol/L ( 0-5)
Have also done Regenerus saliva test for DIO2 gene but still awaiting results.
I feel constantly fatigued and depressed. To be honest I have felt most of my life like this (am in early 50s) but thought it was due to other factors. I did take HRT through patches for about 8 months but stopped this three weeks ago and feel much better. (I felt like a zombie on HRT patches.) It still takes me at least half the day to get going. I need as much energy as I can get as am main bread winner!!
My last doctor was sympathetic but did not do much. I have moved to another doctor in the practice who is listening more. He seems to be saying and doing the right things. (I will be seeing this doc very soon so want to be prepared. We will be looking at blood test results and all of them say 'normal'.)
I have also heard that the endocrinologists in my health area are not open to prescribing NDT or T3. What is the best way to go? Do you think I try to get more levothyroxine prescribed (if so, in what steps/over what period of time?) or try to self source NDT or T3? (Again it is hard and expensive to get private prescription for these in my area. I have tried a bit tentatively to no avail.)
Sorry for such a long intro & lots of questions but am at my wits' end. As a family we do not have many financial resources so I need to try to sort this out by myself. Any help and advice is much appreciated. I think this forum is fantastic!!
Many thanks again from,
A very tired, brain fogged, lacking in exercise and putting on weight, depressed person.
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Moore-23
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Are you aware that your raised antibodies suggest autoimmune thyroid disease (Hashimoto's) which is where the immune system attacks the thyroid and gradually destroys it, this can cause fluctuations in symptoms and test results.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed, although some members prefer to test selenium level before supplementing.
TSH 0.612 (0.27 - 4.2)
FT3 3.84 (3.1 -6.8)
FT4 18.6 (12-22)
The aim of a hypo patient generally, when on Levo, is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well.
Your TSH is good, your FT4 is 66% through it's range so that's pretty good, but your FT3 is only 20% through it's range and that is what's causing your symptoms.
Good conversion needs optimal nutrient levels, yours aren't too bad. However, as Hashi's can cause low levels or deficiencies, I would test yours once or twice a year to ensure they stay at good levels.
Serum ferritin 59 (12 - 250) NHS 29/11/19
Ferritin 97.5 ug/L (13 - 150)
I always get conflicting results like this with NHS v Medichecks ferritin test, the NHS result is always lower and has a wider range than the Medichecks test. I can't explain it
but your Medichecks result is good so I would just eat liver every week or two to maintain this (or liver pate, black pudding and other iron rich foods).
Vitamin D 82 (>50) NHS 29/11/19
This could be better. The Vit D Council/Vit D Society recommend a level of 100-150nmol/L so if that was my result I'd be supplementing with 3000-4000iu D3 daily throughout the winter when we can't make Vit D naturally from the sun. Retest in March.
Once you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, 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 an NHS lab which offers this test to the general public:
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 such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray.
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.
Magnesium 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 if taking tablets/capsules, no necessity if using topical forms of magnesium.
Check out the other cofactors too (some of which can be obtained from food).
Vit B12 Active 93.8 (>37.5) pmol/L
Serum vit B12 420 ng/L NHS 19/6/19
The NHS test is a Total B12 test which tests the total of both bound and unbound (active) B12. The Active B12 test is the better test and yours is surprisingly good compared to your Total B12 test. I like my Active B12 over 100 and you are pretty close to that.
Folate 13.11 (> 3.89)
I like my folate level to be in double figures and yours is pretty good.
As your nutrient levels aren't too bad I doubt they're contributing to poor conversion so it might be worth considering adding T3 to your Levo, although that is extremely difficult to get on the NHS. With your current results even if your GP referred you to an endo it would most likely be rejected because your levels are within range.
HbA1c 34 mmol/mol NHS 19/6/19
This is a diabetes check and your result is good. I think 41/42 is pre-diabetic so you have nothing to worry about.
Total cholesterol 6.26 mmol/L ( 0-5)
This is likely to be high because you are technically hypothyroid with such a low FT3.
Very many thanks SeasideSusie. I really appreciate you taking the time to read through all of this and advise me.
I only found out that I had Hashimoto's in the summer when I did a blood check with Medichecks then. Luckily a few months ago another thyroid sufferer told me about this forum and that is when i have started reading everything here.
As per your advice to others I went gluten free about a month or so ago. It seems to be helping a bit but I realise that I have got to give it more time. Probably need to eat less carbs too (mainly gluten free bread).
Have just started to eat black pudding with my breakfast and that is also helping.
Have just started supplementing with Igennus Vegepa fish oils, igennus super B complex arrived on Saturday (started taking those), iron - started supplementing about two months ago on advice of doctor, using B12 Vitspritz oral spray (but think I will switch to betteryou) and BetterYou VitDK2 oral spray. Taking VitC supplement and drinking orange juice but will add selenium, magnesium, zinc and D3 as you suggest.
Is it possible to take too many things as regards supplements? How do I check?
I really appreciate your advice - will pay careful attention to it!
Funnily enough another close-ish relative in her twenties was diagnosed as hypo on NHS a few years ago and currently gets T3 on NHS but they are threatening to take it off her on the basis of cost. She does much better in life due to the
Where could we find a reliable source of T3? Is it better to PM you?
Is it possible to take too many things as regards supplements? How do I check?
It's best to keep an eye on the core nutrients - Vit D, B12, Folate, Ferritin - and supplement where necessary. I test mine once a year with a Blue Horizon Thyroid PLUS ELEVEN (Medichecks Thyroid ULTRAVIT is a comparable test). I test Vit D twice a year as is advised when supplementing with D3.
Vit C is a good all round supplement, helps the adrenals, good for the immune system.
If Vit D is taken then K2 and magnesium should be taken, most of us are low in magnesium anyway and testing is unreliable.
Selenium and zinc can be helpful with conversion of T4 to T3 but some people prefer to test these first.
Don't introduce new supplements altogether, stagger them at least a week apart and then if you have any adverse reaction you'll know what caused it.
Funnily enough another close-ish relative in her twenties was diagnosed as hypo on NHS a few years ago and currently gets T3 on NHS but they are threatening to take it off her on the basis of cost. She does much better in life due to the
They can't just take it off her. She will have to be referred to a endo for a review and the endo will make the decision. She will have to make a good case for why she should stay on it, get her to start organising that now, gather test results and make notes of how she felt on whatever dose she was on for each test, how she felt before T3 was added, the improvement when adding T3. If she can prove she is better on it and has a need for it she has a much better chance of keeping her prescription.
Where could we find a reliable source of T3? Is it better to PM you?
The Admin team do not keep a list of suppliers. You can make a new post asking for recommendations for a supplier by private message. The post will be closed to replies because we can't name suppliers on the forum, but it will still be visible and anyone who can help will send you a PM. You can then PM myself or another member of the Admin team to see if we have any feedback on any recommendations that you are given, we do know of some unscrupulous suppliers so it's always best to check before ordering and parting with your money.
Welcome to our forum and you will get support from members.
My goodness! You have certainly been through the mill i.e. SEVEN years on 25mcg levo. I'm speechless.
It would be good if both could become members of Thyroiduk.org.uk (who only have three people to do all the 'behind the scenes work' who have met the Lords with other thyroid help forums to change the attitude of the 'specialists' who are supposed to be able to diagnose/treat those who have hypothyroidism to an optimum dose but we have found (many of us as those who've relieved all their symptoms wont be searching the internet).doctors and endocrinologists lacking in expertise and we are prevented from recovering our health
I will join up for sure. I also got the ThyroidUK info pack which was definitely value for money and helped to set me on the right path. I will talk to my relative and persuade her too. You all do marvellous work and have my huge admiration.
Thanks Lora7again. It just feels so good that you are all listening and responding. I think it must be a generational thing but even in the family we are trained not to talk about health issues. Fraid it is like the Monty Python sketch where we outdo each other 'stuff upper lip style' in terms of you have to be nearly dead before anybody recognises anything is wrong with you. Luckily I married a man who is in touch with being a person, feelings and health. He has encouraged me to get all of this sorted out.
I think too many people train to be a doctor and they just do not have the people skills. The good ones have waiting lists miles long.
You are right about 'experts'. We have had problems in other fields and I have learned the hard way...that you have to do mountains of research to find out what is really going on.
That is why I find this forum to be super helpful. Hope you feel better soon too!
Thank you I am in my second Graves' remission so feel very well just not sleeping as much as I would like.
Any help you need please ask and you can always send me a private message if you don't want it on the boards. I am very trustworthy and everything I put on here is the truth. Just my name I use is not my real one because I don't want my family to spot me on here.
Thank you. I really appreciate that. I can understand about not using your real name. A 'nom de plume' can be really helpful sometimes! Hope you get things sorted and I am sure I will be in touch very soon.
True - except there seems to be no 'experts' with regard to hypothyroidism except to get the TSH into a range and once at the top of it, they wont increase dose and neither do they test the FT4 and FT3 to see if patient is taking a sufficient dose (ie. TSH of 1 or lower and both frees towards the top of the ranges),
Thyroid Uk are responsible for this forum too and it has many knowledgeable people on it too. Hopefully if you take notes on improvement then you may not need to add in T3 of at least may well need a lesser amount. Lots present with medication too low or not taking it correctly so keep asking questions as that’s the best way to learn. Have a look at the Thyroid Uk site as well as lots of info on there.
Many thanks silverfox7. I do like to do tons of research (it's just my way!!) I have learned more here in a few months than I have in years. Books help a lot and so does the internet (I will have a look at the ThyroidUK site too for sure - thank you for that) but what is really amazing is everyone talking about their experiences with what they are taking or not - that is pure gold! It cheers me up immensely and is so helpful. Thanks again!
If you test positive for this common gene variation, it's good scientific proof that you have clinical need for the addition of small dose of T3 alongside your Levothyroxine
Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists who will prescribe T3
Assuming in England....Depends which CCG area you are in
Some, like Brighton, currently refuse to fund T3 regardless. Others are increasingly following guidelines...if an NHS endocrinologist says you have clinical need for T3..then you should be prescribed
OK. I will have a look into this. I have heard on the grapevine that my local area endos are not too fantastic about prescribing T3 on NHS. Nevertheless I will give anything a try particularly as I do not have too much pasta in the bank so to speak.
I am trying to keep an open mind. The more I look into this - the whole thing is quite shocking.
How much more productive this country would be (hopefully in a good way) if thyroid problems were treated properly! Truly shocking. (You know all of this - of course.)
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M-23.
New test results
Hi Need Advice Admin Team Please !!
Help please to make sense of my Medichecks results
First test results since starting NDT
