Am I optimising Levothyroxine by it taking at the right time?

Hi I'm on 100mcg Levo for Hashimoto's. I have been taking it for about 12 years now at varying amounts and currently have a lot of aches, pains and stiffness and fatigue. But I also have RA and chronic autoimmune Uticaria and my inflammation levels are always high at present. I am therefore on a lot of meds and have shuffled my Levo about trying to keep it away from times when I eat or take my other tablets.

Recently I have opted for 7.30am (or earlier if I wake up) for Levo and Ranitidine/ Omaprazole because I was told by a pharmacist that this is a good time to have them both because the body and stomach produce thyroid hormones as the body wakes. I don't eat for at least 30 minutes, usually an hour after or more, but I am on Hydroxichloraquine which has to be taken twice a day with food and I take my AdCal D3 and Amitriptyline at night along with an antihistamine and any pain meds I'm needing - so it's a bit of a juggling act.

My fT3 and fT3 are both at the lower end of normal range but, because my GP refuses to give me a higher dose of Levo again (says it makes me veer towards becoming hyper and it's all about balance between TSH - which is 0.06 now and fT4) I want to optimise my 100mcg Levo and not risk losing the value of it to food intake or other tablets or supplements. So can anyone tell me does this sound like I'm taking it at the right time bearing all the other meds and sleep issues in mind? After 4 months of insomnia the most important thing to me is that I sleep so I'm not keen to going back to taking it at night as I need the other meds too much.

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  • My feeling is that if you are under medicated by the ridiculous restrictions of the TSH test, you will be feeling far worse in terms of aches and stiffness, plus many other symptoms probably being attributed to other illnesses. If you had proper levels of T3, which is what your body needs to function, you could perhaps give up some of the other meds you are taking. Perhaps that is a simplistic view but keeping your T3 low is never going to help you. Could it be that interaction with other meds is causing your TSH to be low, since if your T4/3 are low end of normal, it is odd for your TSH to be low. Could you get copies of these thyroid results and post them here, together with reference ranges, so that people can advise you properly?

    As for taking the Levo at an optimum time, I have recently started taking mine in the early hours of the morning, since I wake then to go to the loo. It seems to be helping with absorption, as there is nothing in my stomach to conflict with it and I go back go sleep easily. Do hope you can sort things out soon. xx

  • Just had another thought. Did you take your Levo on the day of your blood test, before or after the test? It can definitely affect the result and drop your TSH, if you take it before.

  • Thanks for this Hennerton. I have thought of this too but my GPs are both adamant that I'm taking the right amount of Levo and I don't live in a place where there is any choice but to accept this. They refused to check my T3 so I got it tested privately along with my antibodies and the whole gamut of thyroid measures and my Vitamin D. The woman GP from the private clinic phoned me to say that my Vitamin D was too low so I did end up confronting my GP on this. He reluctantly prescribed me AdCal D3 - admitting that my calcium levels weren't too high either. I asked the private doc if she thought my fT3 and fT4 were too low but she said no they were okay so this is now three GPs and my rheumy who seem to think that all my problems lie with the connective tissue problems not with my thyroid. I've never been referred to an endo or a neuro or a dermo.

    I will come back with my actual levels but my husband is sleeping off a night shift in the office where my blood results are.

    I am more interested in my thyroid just now because I note that the facial hives I'm suffering from all the time now (2 years since they started one spot at a time and only on my face) are strongly connected to autoimmune thyroid disorders. But they are also connected with RA and other autoimmunities so I'm not going to get far reminding my GPs this of course! I did come off all my RA meds and take the bare minimum but I got generally ill and my feet became very swollen with inflammation that the podiatrist (also self referred privately but now NHS!) explained could only be RA inflammation. I don't think thyroid problems cause inflammation markers (ESR - between 44 and 60 currently - ref 0-10) to be high as mine are - a point that my GP was very keen to make when I asked her if all my problems might be thyroid related rather than RA.

    It is very hard because I read on here of so many symptoms - circulation, parasthesia, flu like aches and pains - that are the same as mine but they also go with inflammatory autoimmune diseases such as RA and Lupus so it's impossible to know. Also if a person only suffers with thyroid issues then they are probably going to have a lower toleration of pain - so my pain threshold might be a lot higher from having RA?

    And when I has been on the higher dose of 125mcg Levo, and prior to this 150mcg - my GP phoned and told me I was taking too much and was near to being Hyper so he was concerned. This was a few years ago now but I still had the RA joint pain and stiffness even at that level of Levo so I don't think my problems can be all about being Hypo. I'm only on one disease modifying drug currently and only taken it for five days so it wouldn't influence my TSH yet but when my full thyroid was checked privately I was taking no drugs at all apart from the occasional Amitriptyline and Zopiclone (for sleep).

    I had the private thyroid tests done early in the morning after fasting and I didn't take my Levo that morning. The results are the same as the NHS ones I had taken when I did take it.

    Sorry to waffle but I'm in bed once more with total fatigue - meant to be working and walking the dogs while the weather permits!

  • I was told not to take Ad Cal because all it does is make the bones hard (brittle) after all it does make sense as the calcium is just ground 'rock' isn't it. its so difficult because you get all these confilicting reports and its so confusing. Anyway I take a coral/algea based natural calcium but unfortunately you have to buy it yourself.

  • Oh dear with every step forward we make a step back too! I have been on high dose steroids several times so my GP thought calcium was important too as mine has been low. On steroids the risk of osteoporosis doubles. I think it depends if you are taking AdCal because you have low vitamin D and are at high risk of osteoporosis - if not and you are just taking it to supplement just in case then it's a very different matter I guess?

  • Hi, I have to take other prescription drugs too so I understand the juggling.

    Ranitidine will make your stomach acid low which has an effect on the absorption of levo. This in itself will make you need a higher dose. Ranitidine will also have a detrimental effect on your absorption ofVit B12. I would advise to get your vit B12 levels tested and in the meantime if you are not doing this take at least 1,000 MCG sublingually.

    My routine is take thyroid meds on waking, wait at least on hour before breakfast, only drink water before this time. 3 hours later I take B complex, vit B12 Selenium. In the afternoon I take vit c and iron. I take my prescription drugs together around 8 pm. I've put all 3 doses into one, but you'd have to talk to your doc. The jist of this is to keep prescription meds at least 4 hours away from thyroid meds.

  • Hi Helcaster and thanks. This just isn't possible for me to keep prescription meds away from thyroid meds for four hours - even one hour is straining things but I will take what you are saying on board re Ranitidine and drop my morning tablet of this. I had stopped taking it for a while but then my stomach has been hurting at night so GP put me back on it now as the antihistamine and chronic hives might be the cause. So fed up just now - I am thinking of dropping all the drugs again and seeing what happens - maybe if I collapsed completely they would actually do something! I had my B12 tested twice and then tested the other way i.e homostycine (sp?) and MMA (I think that's what it was called at least) and all levels good - same for Feratin, Foliate and Coeliacs. The only one out of whack was Vitamin D which was 28 (normal range 50-200) and calcium slightly low also hence now on AdCal D3. But I will do as you do and take the Levo as early as possible. Tempted to break the tablets in half and take extra just to see what happens. Do people do this sometimes?

  • Just something for you to think about...

    Many people with thyroid issues actually have too little stomach acid instead of too much. And it is also true that stomach acid production reduces for everyone as they get older even if they have no health issues. Unfortunately the symptoms of too little and too much acid feel very similar to the patient. I have taken ranitidine, omeprazole and lanzoprazole in the past, but eventually discovered that I had too little acid. I managed to wean myself off acid-reducing drugs and instead I take Betaine Hydrochloride (Betaine HCl) with my meals. Betaine HCl is an acid which works like stomach acid. I think it is made from plants. It can be bought without prescription.

    Staying on acid-reducing medicines long-term has the potential to cause unwanted side effects. If it is possible for you to get off them then it would very good for your long-term health.

    en.wikipedia.org/wiki/Ranit...

    en.wikipedia.org/wiki/Omepr...

  • If you have one autoimmune disease it is more than likely you will get others.

    Many GP diagnose their patients with thyroid gland problems by their TSH result and adjust doses of meds up/down accordingly. This is a poor way to treat the patient as it can cause more hypo symptoms. It would be preferable if they took more account of clinical symptoms . I understand with RA that this is can be a problem.

    Dr Toft of the British Thyroid Association says it is o.k. to have a low or suppressed TSH and the addition of T3 to a reduced T4.You can get a copy of the Pulse Online article to show your GP if you email louise.warvill@thyroiduk.org.

    You can take your T4 at bedtime, not having eaten 2 hours beforehand. If having a blood test next day, miss it and take after blood test.

  • Thanks very much for this Shaws. I have told my GP about Dr Toft's book already but he just shrugged and said I had to trust him on this matter. He knows I got myself tested privately for T3 and Vit D and it didn't set us back too badly but if I continue to ignore his professional advice then I think both GPs will end up giving me short shrift. He is the main route to my rheumy consultant so I can't afford to fall out with him as I live in a small community in a far away place.

    If my doctors continue to not get to the bottom of my hives and not do anything about my tiredness then I will make an appointment to see Dr Toft next year down in Edinburgh and tell them why. But I need to sort out whether the hives are so bad because they are an allergic response or whether they are a new part of my general autoimmune profile.

    I used to take my Levo at night but now I have to take antihistamine and Amitriptyline last thing so don't want to add Levo in again too. Unless I can get dose of Levo increased and then my insomnia and hives take a hike? But for now I think I'll just carry on taking it in the early hours and drop the ranitidine.

    X

  • Here's my Endocrinology profile from 2 months ago

    Total Thyroxine (T4) =111 (59-154)

    TSH = 0.74 (0.27-4.2)

    Free Thyroxine =15.9 (12.0-22.0)

    Free T3 = 3.6 (3.1-6.8)

    Thyroid Peroxidase Antibodies 54.0 (0 - 34) Not quite sure what this means apart from that it's over the normal range!

    RArebird

  • I think your hives are probably from the thyroxine. that happened to me, and when i changed the brand, I was fine and they stopped. PLus you tsh is NOT low, it is normal. Aches and pains, stiffness and sick feeling, is also a side effect to levothyroxine and alot of people seem to forget this, and so do doctors. they go about treating us for other things, when all the time, it is a side effect, and we ususally get that side effect, if we are taking too much. If you cut it down a little, you will find most of the pain eases.

  • Thanks. I know my TSH is normal - it was my FT4 and FT3 I was a bit concerned about. I've been on Levo (same brand) for about 12 years now and the hives only started with the RA and the drugs, which are in a league of their own (no one would ever complain about Levo side effects again if they were taking take these!). Levo is fine for me and the only issue I've ever had with it is when in the day to take it. Other than this my GP tests me once or twice a year (about four times this year) and phones me if he wants me to raise or lower the dose.

    If you look up chronic hives (as opposed to acute allergic ones like you are describing) you would see that they can be autoimmune and I believe mine are. I was worrying that it was because I was Hypo but I think, from what you and others are saying, that it's more likely to be connected with the RA than my hypothyroidism which probably is stable currently. I certainly wouldn't want to take any less without doctor's advice.

  • Thanks HumanBean, my husband read a book over the summer which explained this about anti-acid drugs. I take them as and when needed at the moment rather than everyday as prescribed. I will look into the alternative you suggest but the job of the Omaprazole/ Ranitidine for me is to protect my stomach from the steroid or immunosuppressant medications I take for rheumatoid arthritis. My stomach is very delicate though and I don't like taking any drug unless it is required for my overall health. I don't always take it daily but it does seen to calm my stomach right down when I have problems.

    I will tell a friend who takes the max dose of Omaprazole daily for an unspecified stomach problem that is thought to be acid reflux. He has been on it for years so perhaps it is causing rather than solving his stomach issues?

    I know that I had to come off Omaprazole when I was ijecting methotrexate because it increased the toxicity of the DMARD and made me really very ill. This whole business of drugs is so not where I ever wanted to be?!

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