Hi all, I posted my thyroid blood tests back in January, but have been trying to get my vitamins tested via the surgery with no success, so I've just forked out for a Blue Horizon test and the results and ranges are as you can see above with the 'normal' protocols of no Levo for 24 hours, no biotin for 4 days and test done before 9 am.
I have been on 125mg, but think I maybe should go back to 137.5mg that I was on last year. Quick recap I had thyroidectomy 18 months following cancer (though no symptoms).
One thing I've noticed is the NHS test I had in January gave my FT3 at 85% (4.05 on range 3.1-6.8 pmo/L) through range, whereas this latest test from 2 weeks ago shows me at 25.7% !! Any ideas for the big difference. I do supplement with Vit D @ 3000 IUs, Thorne Basic B capsules, 100mg Magnesium citrate plus my angina meds, blood thinners.
I've certainly not got my energy levels right and have various aches etc in the shoulder/armpit.
Any suggestions please.
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Devonlad
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Just had a quick peak at your bio (thank you for doing it) and keep tweaking as you go. It's easier to give peer to peer advice when us hypos share information😊👍
I noticed the Post 7 months ago your conversion of T4 to T3 was flagged as being low and things haven't got any better. You may need some T3 as suggested before. You have given monotherapy a good go and this may need to be considered.
Hopefully someone a bit more knowledgeable on vitamins will be along later, but the only one that looks low to me is folate. One thing I would ask is were issues regarding taking statins when you are hypothyroid discussed with you? This may cause problems and if adequately treated with thyroid hormones often the cholesterol levels drop. In fact high cholesterol is one of the markers for hypothyroidism, along with slow heart rate.
If you Google hypothyroidism and statins loads comes up, but it is also mentioned in;
Please click on the link and read if you have not seen this before - 5 minute read. It is important and don't presume your doctor knows this - if you read my bio you will see I take no knowledge as a given.
When a fellow sufferer diagnosed me she told me to check my pulse - it was 52 after working and drinking coffee!😱 I believe super fit endurance sports people can achieve these figures as resting rates through training, but it would be a bit of a stretch to compare myself to that. Yes I was hypo.😬
Hi Charlie-Farley,Many thanks for your reply and thanks for the link - very interesting.
I had no idea about Statins, no ones ever mentioned it in relation to my thyroid condition and neither the gp or nuclear medicine consultant have tested my cholesterol levels. When I was first put on statins 4 years ago- Atorvastatin, after about 6 months I felt awful and following a blood test one of my liver functions was way off so was changed to Rosuvastatin and have been on this for 3 years. Maybe a rethink on this is needed. I'll investigate further. Thanks again, really appreciate it.
Very interesting regarding statins. I am due a GP call just coming up with 7.1 cholesterol test and still looking to increase my levo. My question is do you know how much getting your thyroid to optimal is likely to bring it down - obviously very ballpark.
I have never had my cholesterol tested and even if it were on the high side, for me the risk of tissue damage is too big.
Have a read of the link I posted further up.
All I know is a friend whose husband took statins has pretty much lost the use of one of his legs. A doctor who visited their vets practice, in conversation about this issue said are you on statins? Friend’s hubby said yes doctor said stop! It was affecting both legs at the time but only one leg recovered. This is not the only instance that has come to my ears, and I suspect it is under reported because many people will not even realise it is the statins causing it.
Many people simply do not question anything and those are the ones that really need advocacy. People on here have the ‘smarts’ to question and not take everything at face value.
From being on this site, one thing, I have realised is people very often end up on statins (and antidepressants) long before they are ever diagnosed as having hypothyroidism, even if that is picked up.
The Dr Myhill YouTube video that has been posted here recently clearly lays out the issues regarding not being diagnosed. Some people never are and it’s a travesty.
Those that are diagnosed are frequently, not given the right doses of medication, and there seems to be a habitual undermedicating. The purpose of treatment is to get rid of symptoms, not get blood tests anywhere in range, or as they say ‘NORMAL’. With regards to blood tests, this word should not be used - It is a non-word.
If you are on treatment and your symptoms have been alleviated that would be considered optimal treatment.
I had a high cholesterol test result a couple of years ago and I argued with the GP that my levothyroxine should be raised from 75 to 100mcg instead of taking statins. She agreed to give this a try. After 6 weeks or so my cholesterol was tested again and the nurse who rang with the results said it was the most dramatic reduction in levels she'd ever seen. I don't know the actual figures but it was a significant change. Good luck.
Many thanks for your replies. Firstly I apologise I made a mistake copying the range of the FT3 results from my NHS January test results.
It should have read 4.6 on a range of 2.9-4.9 pmol/L which is 85% conversion
I've done a bar graph of all the FT3% results to date, see above - I hope it shows. There does seem to be some variability, no idea why.
I don't always get the same Levo, I looked at the post you mentioned which is interesting. It might be difficult to arrange as the pharmacy in the village is only small with presumably limited supplies, but I'll give it a go, I have copied the body of the post to show to the pharmacist. I'm not sure which brand to go for as I've had a variety over the months.
Following Charlie-Farley's reply I'll investigate statins further, but am inclined to stop taking them to see if this helps the muscle pains I get in my right shoulder/upper chest. I did get a couple of cholesterol results from a failed vitamin test at MMH in January and these are Total Cholesterol 6.9 mmol/L, HDL 1.8mmol/L, Non HDL 5.02 mmol/L and Triglycerides 1.46 mmol/L. I will contact my gp to arrange one through him as he should have this before. I hope he gets to see this.
Finally, as it might take some time to see an endo or badger my current consultant for a low dose trial (2.5mg or 5mg?)is it feasible to buy say a months supply privately of FT3 (Liothyonine) and try it out or would this not be recommended?
If so could you pm me with where I can get it from a reliable source.
I really can't thank you good people on here enough, without you I'd be completely swimming in the dark, well done and keep up the great work.
The end of the paragraph relating to Statins I meant it to read that I hope Charlie-Farley gets to read this reply, not my gp (he won't be reading this).
Hi SlowDragon,Many thanks for your reply. To answer your question, the NHS test was done before 0900, with no levo for 24hours and no biotin for 4 days.
I do live in Devon, which is a bit of a desert for endos I gather, I do have the TUK list of endos.
I did manage to speak to my gp last week to ask why I was under Nuclear Medicine and not an Endo, the answer, it was due to my cancer surgery, that was end of that discussion.
I'll certainly see if I can persuade my current consultant if he can prescribe T3.
jimh111 has links re why from a cancer point of view it may be best to have slightly lower Ft4 and addition of T3 prescribed
Meanwhile work out which brand levothyroxine suits you best and get GP to specify brand on prescription
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
beware 25mcg Northstar is Teva
Northstar levothyroxine phased out Feb 2023
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.
Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Netherlands (and Germany?) guidelines are for thyroid patients to always get same brand levothyroxine at each prescription
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test
Increasing number of members find it smoother/more tolerable to split levothyroxine as two smaller doses, half dose waking, half dose at bedtime.
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Thanks for the information. As it happens all my 100mg is Accord and most of the 25mg is Mercury Pharma, except at the moment the 25mg I'm taking is Teva. So I'll do a switch now and speak to the pharmacist this week to see if I can stick to Accord and Mercury.
So I think I started replying to you around 8 months go and in that reply i had worked out that your conversion ratio while on T4 monotherapy was coming in at around 5.90 :
These results above are pretty consistent and coming in at 5.98 - which is more like 6 - so if anything, your T4 to T3 further compromised.
Your vitamins and minerals are pretty much optimal and there's little else you can do and just need to now maintain these core strength vitamins and minerals.
It seems obvious to me that you would benefit from the addition of a little T3 - Liothyronine - likely just enough to replace that, that your thyroid once supported you with.
There's little point to discuss Devon CCG again - hopefully your new endo might be more amenable and able - f not the next option is to look at going private and or sourcing the other treatment options that are available - and were available on the NHS some 20 years ago and readily prescribed by your doctor if your recovery on T4 monotherapy wasn't restored post surgery.
Hi pennyannie,Thanks for your reply, interesting about the conversion ratio, I'll work out how to calculate it. What is the 'ideal' level for conversion?
Any pointers on other treatment options will be, as ever, much appreciated.
I think I've written all this out to you in a previous post - do you know how to find your previous posts -
just press on the icon top right saying More and go you your profile page -
and to read anybody else's profile page simply press the icon alongside their named reply to you .
Sorry - my eyes aren't very good today - but let my know if you can't find my previous replies and I'll try and retype everything later today or tomorrow.
Ok - no worries - let me know - I think I went into ' my ramble " on your first post some 8 months ago - always worth reading through things again especially if living with the brain fog as sometimes the ' pennies ' don't drop until you reread the rereads !
Here are my latest test results taken a couple of weeks ago carried out per recommended protocols on here, this was in preparation for a telephone consultation with my Nuc Med doctor on Thursday this week.
As a result of Charlie-Farley's kind input about statins (I'm extremely grateful for that), I stopped taking my Rosuvastatin and within a couple of days the aching/discomfort under my right arm almost disappeared. I still have the odd twinge, but that's probably residual muscle damage from the statins. As the NHS advisory said it's necessary to sort the Hypothyroid out first, I believe I am effectively hypo (I have no thyroid) as my FT3 is consistently low. My GP wants me to go back on half dose statins and see if the pain comes back! I did manage to get him to agree a Cholesterol blood test, which I've had. Cholesterol/HDL ratio 5.3, HDL 1.6, Non HDL Chol LDL 6.7, Trygyceride 1.0. Hopefully if I can get my thyroid levels right the LDL will come down.
When I talk to the consultant on Thursday, unless anyone thinks otherwise, I'm going to push for a trial of low dose T3 and see where that gets me. I'm generally feeling OK, but it's like I only have half a tank of energy. I do a 2 mile walk which besides getting hot I'm OK with then I do a bit round the garden and rapidly run out of steam and have to stop.
Any thoughts/recommendations, as always, will be greatly appreciated
So I'm guessing you worked out how to find your previous posts and the replies given ?
Yes it's obvious looking at the new blood test results that your conversion of T4 into T3 is too low and whilst I commend you for these long walks maybe ease off a bit until your T3 level is better placed as then you'll have more energy throughout the day - rather than konk out half way through the day as described.
No thyroid hormone works well until your core strength is up and maintained at optimal - did you get ferritin, folate, B12 and vitamin D run ?
I hope you are successful with your request for T3 as a new patient for T3 - Liothyronine .
I believe Devon limits prescriptions to 10mcg daily and just hope these stupid restrictions have been removed and now in line with the NICE guidelines.
I'm hope you manage to liaise with the support group in Devon and have been briefed by JaneChapple as to how to try and handle the forth coming appointment.
Thanks for your reply. Yes I managed to find my previous post, do you and others pick up on these added posts - I'm thinking of JaneChapple - I have registered for the Devon group, but haven't contacted her directly do I need to contact her separately or will she pick this up?
My GP doesn't seem to want to do Vitamin testing (he just ignores my request), and the consultant said to me he doesn't know about vitamins!!! So I went to Blue Horizon and the results of the latest one is at the very top of the post - 20th Feb. Since then I have increased my Vit D to 4000 IUs (there's a very interesting meta analysis just published on how Vit D can help reduce Alzheimer's by up to 40% ).I'm also taking Vit K2 with the Vit D.
No- it's always best to start a new post with a new question as everybody sees new posts and chips in with replies as and when they see fir and we try and answer every post as completely as possible when first posted as the volume of posts dictates we don't really have time to look back at ' old ' replies unless you as the person posing the question highlights a name - like I just did for Jane Chapple as if shown in blue she gets notification that her name has been mentioned and prompted to look back.
Hope that makes sense.
Yes Elaine Moore has written extensively about Alzheimer's.
At least your GP and consultant are honest in that they don't know and have no interest in vitamins and minerals - probably because they are not taught about them as you can't patent vitamins and minerals so Big Pharma are not interested and therefore these are not part of the medical school training programme.
Now I'm up at optimal through supplementing I just do a yearly full thyroid panel to keep an eye on everything. and include my thyroid readings but not too fussed nowadays as I feel ok.
Those look pretty good at first glance and see you have had replies but your metabolism is too low. you are not fully metabolising so it's hard to say anything sensible a few months later.
I'm not sure how the support group works - I'm not in it as down in Cornwall - but if around, Jane should be alerted to this conversation.
I thought she had popped up last time - maybe me - getting confused - being dyslexic I tend to remember too much of things and why I picked up when I saw your name again adding onto this post.
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