I'm having a bit of a crash at the moment and having to cancel so many social events, which is frankly quite depressing! I need a bit of help and am wondering if some kind soul might advice me. I've been doing lots of trawling and it is quite a minefield working out what we need given that the NHS seems so woefully inadequate in the way it deals with hypothyroidism.
I don't have my meds results but I do know that my last test back in September was saying my iron is low. I take 100 Levothyroxine which doctor said is adequate. Since then I tried HRT evorel conti for about a month and had terrible histamine reaction so came off it. I seem to have plummeted even more than before I was on it, but I didn't get any significant improvements in terms of energy and sleep from being on it. I still have TERRIBLE sleep, going to sleep well but then waking up at random times and staying awake. This is the bane of the my life quite frankly and is something I have suffered with for a really long time, but I am at my wits end with it, as it effects everything. I really feel my quality of life is at an all time low!
I was also diagnosed with CFS/ME about 20 odd years ago, but have had intermittent periods when I have worked and felt better, but at the moment do not work as a result of my sleep/energy issues. Intuitively I feel I have gut issues, probably need liver support and cortisol levels all over the place. I'm wondering if I need to borrow some money to see if I can see a specialist privately, as I don't have much faith in the doctors over this.
I have recently starting supplementing again with B1 (500mg) B12 complex, high, Floradix (for iron and other vitamins (B's and C), Magnesium (300) and cod liver oil, plus vitamin D3 (1000). I'm also highly focused on eating well and don't eat gluten and wondering whether to come off grains?
It feels a bit ad hoc and it is so baffling all the conflicting information out there. I know ultimately it is up to me to make a decision about what to do next, but I feel a bit out of my depth at the moment. Do I do a blood test at home and see about cortisol? Do I ask the doctor to see if I can see an endocrinologist (might take ages, not sure how much faith I have here)? Try to find a specialist for T3 or cortisol testing? Obviously, financially it all mounts up. I would love to hear what other people have done, and also if other people have had the histamine reaction to HRT too? I know there is the bio identical hormone option too (private) or NHS body identical (but fearful of histamine reaction), but obviously this will no doubt end up being a costly route.
If you have read this far I am very grateful.
Feeling very tired right now and a bit over-whelmed.
Clare
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clarityforest
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clarityforest, you've come to the right place to be able to learn to see the woods through the trees. Welcome......
It can all feel overwhelming, and please know, most of us have felt that way at one time or another. It's a learning process, and needs time to take in as much info as we can at any given time. You are amongst knowledgeable folk who have trod this path before us, and are here, and willingly give their help and advice.
My advice to you right now, is to stop, take some deep breaths, and congratulate yourself for finding this forum. Count yourself hugged, as well as welcomed. x
Thanks for the welcome and also for the reminder to stop and take deep breaths and congratulate myself for finding the forum. I needed that and the hug too! You are very kind.
You obviously know that nutrient levels are as important as thyroid hormone levels. But did you also know that when and how you take supplements is just as important as what you take:
I have recently starting supplementing again with B1 (500mg) B12 complex
So, what are you saying here? That you take a B complex with all the Bs, plus extra B1? Which B complex are you taking? Because they were not all created equal!
B vits should be taken two hours away from thyroid hormone, preferably in the morning because they can energise.
Floradix (for iron and other vitamins (B's and C)
So, are you saying that the Floradix contains iron plus B vits and vit C? If so, that is a really bad idea. The iron will block absorption of the B vits.
Iron should be taken four hours away from thyroid hormone, and two hours away from everything else, except vit C. It blocks the absorption of everything, but - weirdly enough - the vit C helps with the absorption of iron. Also goes a long way to avoiding constipation which is often a problem with iron supplements.
Magnesium (300) and cod liver oil, plus vitamin D3 (1000)
Magnesium and vit D3 should also be taken four hours away from thyroid hormones (cod liver oil two hours away) and two hours away from iron.
If you are taking vit D, you should also be taking vit K2-MK7. Taking vit D increases absorption of calcium from food, and the K2 makes sure it goes into the bones and teeth and doesn't build up in the soft tissues.
Wow Grey Goose you are super knowledgable. Again, when I am less tired I am going to come back with pen and paper and make notes of what you have written here. I didn't realise that iron blocks the B vitamins! I wonder why they make the floradix which is super popular with them in? I'm taking the Viridian B Complex and G&G B1. That is helpful knowledge indeed, about the K2 and also about taking the magnesium and D3 away from cod liver and iron.
I take my thyroxine at night time before I go to bed because I find it easier then as it won't mess up the vitamin intake. I have wondered if this impacts my sleep. Do you have any knowledge about this too?
I don't think I said anything about taking D3 away from cod liver oil. I don't think there's a problem, there. You can take them together.
I wonder why they make the floradix which is super popular with them in?
Probably because people are willing to buy it. So many people spend a lot of money on supplements, thinking they're doing the right thing for their health, without the slightest clue how to take them, or what to take. On paper, it sounds good. But, it isn't.
The Viridian B Complex isn't terribly good, either, because it contains folic acid, instead of methylfolate. A better one is Thorne Basic B.
I take my thyroxine at night time before I go to bed because I find it easier then as it won't mess up the vitamin intake. I have wondered if this impacts my sleep. Do you have any knowledge about this too?
That really depends on the individual. Some people find it helps them sleep better, some find that their sleep is worse. Have you tried taking it in the morning.
Also, it's best to take magnesium at night, because that can help with sleep. But, as it has to be at leat four hours away from thyroid hormone, that makes taking levo at night difficult.
greygoose....hello I know you have a really good list of differing magnesiums, and their effects. I'm not techie enough to copy and paste or provide the link.....would it be possible for you to do that here for Clare? Thank you if you can xx
Can you tell me which one you take? I haven't noticed any difference so far, but then I read something about it taking a long time to build up magnesium levels.
hi. I started with Magnesium Citrate from Lamberts’ MagAsorb’ 2 tablets at night = 300 mg. I found it worked well and it is my go to source if I have bad insomnia. Normally I take magnesium glycinate complex (2 capsules = 250mg dose) which includes Vit B6, pantothenic acid, and zinc. I obtain from this product from Amazon. It usually provides a peaceful nights sleep and I believe it is good for the heart.
Hi Goldie, Good to know I'm not the only perimenopausal one here! Can you tell me what B12 liquid you take at all please, also the D3 and K2 spray? I don't really like taking all these supplements so I can definitely see the appeal of the liquid and spray for of taking them. So, no iron at all then? I have read something that said that often we aren't iron deficient but copper deficient. It's terribly confusing! Thanks for your well wishes.
I have been very cautious and researched supplements. I also joined vitamin d and b12 groups. I don’t even like taking pain killers but I was literally on my knees.
My iron levels were well in range on bloods and always been fine.
I found Nature Provides B12 liquid on Amazon its 3000mcg but B12 is water soluble and you excrete what you don’t need, so i feel ok. I take vitamin d3/k2 better you oral spray. I thought i have nothing to lose by trying.
I take a regular b complex vitamin daily too.
I take magnesium only if really bad leg pain day. I had these at start but are 500, and I think that is a bit much so it worried me taking every day.
I honestly believe d &b these two vitamins have made a huge difference. I’m not as tired, my pins/needles have reduced, my brain fog has got so much better, aniexty less, stronger and i genuinely feel more positive.
Leg pain and stomach feels full still though.
Did you have Covid at all? I had at end of June beginning of July. Two weeks later I had a pain in my arm and hand for a day and went. Then i plodded on with life but increased exercise and activity. Then went down hill rapidly. I read Covid can deplete vitamin levels as well.
I will definitely let you know how progesterone goes. I suffer with allergies too.
I did have Covid back in June too, but I think it was the HRT and some family stress that has triggered this flare. I feel like I am always deficient in vitamins of some sort! Yes, I would like to hear how you get on with the progesterone too.
Forgot to say that I haven't yet ventured down the gel HRT path. I'm kind of annoyed I didn't start with this as it is easier to adjust levels. So you are taking the progesterone pill then too? I would be interested to hear how you get on with that part of the cycle as that was when my histamine reaction really ramped up, but of course, we are all different and histamine might not be a thing with you.
Hello, have you tried progesterone cream (start on day 8-10 of cycle)- additional magnesium, Taurine+ glycine (liver detox, but helps me with sleep) and what is your vit D serum level?
Hi Clare. HRT has a lot of options nowadays and patches is only one of them. I heard that Estradot is often better tolerated tha Evorel conti and then there is also gel and spray. A good place to learn more about all the options is Menopausal not Mad website or dr Louise Newson's Newson Health.
As to thyroid matters - another good source of information other than the forum is Paul Robinson's Thyroid Patient's Manual available on Amazon and if you have Hashimoto's especially, also Izabella Wentz's books.
On the CFS/ME front, have you heard about Rebecca Tolin?
Thanks a lot Samaja. I will make a note of looking at those sites. I have looked a bit at Dr Newson's site and I do know of Isabella Went. Yes, I wonder if I will have to try the gel option at some point. I think my hormones need to calm down a bit after the one month shock of the patch experience. The histamine reaction was very bothersome though, so I will have research a bit around this now too.
Hi l have hypothyroidism too fairly recently diagnosed probably had it quite a while as tired aches pains. Now on 50 levothyroxine not quite as tired. I had late menopause 58 now 60 nearly 61. I have just started BHRT oestrogen gel and progesterone tablet. Only been on it 2 weeks no change yet but can take a while to work. The bio identical hrt called BHRT is available from your GP. If you are on levothyroxine or over 60 you dont pay for your prescriptions. I get headaches aches tiredness but it's part of menopause symptoms as well as hypothyroidism which makes everything worse. Hoping BHRT will lower my cholesterol levels as read it might. Ask gp for fullblood tests. You can get a printed readout of your blood results at your surgery l always ask for one. Good wishes to you.
Hi, Thanks for reminding me about getting a full blood results test. I wonder if I need to do another one as the last one was before I took the HRT and now I'm sweating a lot, so that's a new symptom. I was perimenopausal, and wonder if I've spurred myself into menopause! I'm 51 years old. I took it because my energy was bad and the sleep but it made no difference in that short time. Interesting that bio-identical HRT is available at the GP's. I thought it was body-identical (so made with synthetics?) but that is good to know. Can you tell me which gel and tablet you take at all please? I'm trying to wade through and it is so good to get recommendations, although 2 weeks is still early days. I appreciate you responding.
2) request GP test TSH, Ft4 and Ft3 plus vitamin D, folate, ferritin and B12
Stop taking any supplements that contain biotin a week before blood test
Book early morning test, ideally around 9am and last dose levothyroxine 24 hours before test
As 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
Bloods should be retested 6-8 weeks after starting, changing or stopping HRT
Hi l think l might have got confused with body identical and bio identical Its oestrogen gel and progesterone tablet l take. Think it's made from yams.
Hi thankyou l go to the doctors quite a bit. They wont give me a blood test very often. I have a call from doctor on 15th December as started hrt l will ask for another blood test last time my TSH levels were 4 something which they said was in their range. I thought it was fairly high. I think 50micrograms may be not enough. The doctors dont seem to have the time to listen to me. I will definitely push for another blood test and hopefully cholesterol test too. Thankyou for your reply
Thankyou for advice l will ask the doctor who's ringing me on 15th December which is about 6 weeks from me being on HRT l hope she will let me have a blood test. Why do they have a normal range of TSH of up to 4.2 if it should be much lower? I wonder if that's why l feel tired and cant sleep plus aches. I dont know if it's my menopause or thyroid now.Thankyou for response
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Thankyou very much for your message. I am having a TSH blood test tomorrow morning now. I felt so ill over the weekend. They sent an ambulance out to me after l rang with my symptoms. l asked them not to though. I had a panic attack just before it arrived. I felt so awful with thyroid symptoms. Crew said ring doctor early today l did so getting tested tomorrow. My last test while on levothyroxine was 3.38 which worried me but l was told by receptionist it was in the normal range which is up to 4 something. Praying l get sorted out as feeling terrible especially during the night.
My last test while on levothyroxine was 3.38 which worried me but l was told by receptionist
Since when was receptionist a doctor?
On levothyroxine TSH should ALWAYS be below 2
Levothyroxine doesn’t “top up “ failing thyroid, so almost everyone, will end up on full replacement dose.
That’s typically…..1.6mcg levothyroxine per kilo of your weight per day
So unless very petite, likely to need at least 2 further increases in levothyroxine…..initially to 75mcg …..retest again after 6-8 weeks and likely further increase to 100mcg then …..or in another month or so
Bloods should be retested every 2-3 months until all symptoms are improved and you feel well
If still have symptoms when TSH is under 2, then dose levothyroxine is increased again by another 25mcg …..
see my replies and links to guidelines here in another reply this afternoon
Hi I'm about 12 stone and 61 years old very late menopause at 58. I take vit d and magnesium supplements. I also have a prolaspe problem which makes exercise a problem for me.
I cant understand after my late blood test why a doctor didn't say my results were too high. Print out sheet said l was in normal range as it went up to 4 something when my results were 338
The range is far too wide generally…..but specifically any one on levothyroxine (who still has hypothyroid symptoms) and TSH over 2 should have next dose increase in levothyroxine
Hi since my doctor left practice about 5 months ago. I'm on hrt gel 2 pumps and progesterone. I'm 5ft 7 in height. Feeling absolutely terrible had panic attack just over an hour ago lying on bathroom floor shaking. Feeling alot better now but headache and sickly feelings weakness. Husband calmed me down. Managed to get 2 paracetamols down. Blood test tomorrow 8.30am going to take 2 levothyroxine straight afterwards or one and cut second in half. Blood test takes days to come back!!I am lying on sofa sleeping clothes on tonight so as can go to blood test. Husband driving me there I'm weak and feel sick and cold. I know if we ring ambulance will come they only deal with emergency heart stuff as that's what happened Saturday night. Thankyou for help l intend to make sure l go to test tomorrow without taking levothyroxine now or test will show wrong results. Brand of levothyroxine is Almus.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Aiming for Ft4 at least 70% through range. Most important result is ALWAYS Ft3 ….at least 60% through range
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