Hi everyone. I read last week that liquid levothyroxin had recently been given an extra licence in the UK. As of 2020 it can now be prescribed for people who have a malabsorption problem with tablets. Sorry, I can't find the article. I was away last week and didn't make a note of it.
I was very surprised that the endo I've been seeing has been treating me with Oestrogen for this and never mentioned liquid levo. I contacted him and he has replied that he is not allowed to prescribe liquid levo on the NHS any more. Thyroid Uk is still showing several different varieties of liquid levo as being available here in the UK.
Does anyone know if it is still available on the NHS here? What is the actual situation with it? It seems odd that it was only added for malabsorprion last year and now it's been withdrawn completely.
Does any one self medicate with it? If so can you PM me with where to get it and the cost.
Is it possible to get it on a private prescription? If so what are the costs of doing so and how do I go about getting it?
Also has any one had experience of switching from levo tablets to liquid? Did it help? I was hoping to get liquid rather than capsules as these are vege friendly.
I have been suffering with lots of hypo symptoms for the past six years due to malabsorption. I'm really desperate for a solution. My endo is convinced my low oestrogen levels affect my absorption of levo. He has just agreed for me to increase vagifem from twice a week to four times a week. Even so, it is such a minimal amount of oestrogen, I fear it'll take years for me to get better - even assuming that's the answer.
Any help or advise is greatly appreciated.
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dizzy864
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Having read your post and an earlier one with some ranges I wanted to ask why you think you have absorption issues? As the written word is often misunderstood I would stress that I’m not doubting your feelings and obvious symptoms I am just interested as your last posted results seem high. Always trying to learn how to feel better so thought I’d see what your thoughts were. Hope that’s ok?
My T3 is now over range and my T4 is near the top. I'm currently taking 125 levo and 55 of lio - it used to be 60 of lio but oddly I suddenly became hyper after many years on those doses.I have been told repeatedly over the past few years that I am over medicated because of my results. Every time I've been ordered to reduce - some times by enormous amounts! Even a tiny reduction to T4 makes me very unwell. If I increase T4 or T3 by even a tiny amount I go hyper. Inspite of the high bloods, I have many symptoms of hypo. I've had absolutely no hair under my arms for over 6 years. I have "splits" in my eyebrows too. I have lots of muscle aches. I can't control my temperature - sometimes too hot but more often too cold. Constipation and tummy pains. Bladder problems. And ofcourse tiredness and weight gain. I'm a stone and a half heavier than I always used to be. I'm always hungry and too tired to exercise.
Nine months ago I started seeing an endo privately. He told me that my body is unable to absorb levo properly due to having virtually no oestrogen following the menopause over ten years ago. He said the fact that I finished the menopause ten years ago means that lack of oestrogen is causing my hypo symptoms. He's told me to take numerous forms of plant oestrogen and then HRT. I can't tolerate them and become very unwell - severe head aches and/ or severe stomach problems. He told me that is due to lack of oestrogen too. I can't absorb vitamins either. I keep taking more and more and B12 and vitamin D keep falling. Ferritin and folate I am managing to hold at very low levels but I can't tolerate a higher dose of iron tablets.
Eight weeks ago I started on vagifem twice a week. I can tolerate it, which is progress but it is such a tiny amount of oestrogen. I've read it will probably take two years for it to build up enough in my system to be of any use. Incidentally, I had absolutely no problems with the menopause.
I've been really bad since late April when I had my second covid jab. The vaccine went straight into my muscles in my upper arms, shoulders and neck. I already had muscle aches from the hypo but the pain has been terrible. I've had to take strong pain killers to get any sleep. The last day or two it has been better. I've also been diagnosed with long covid. I had a very minor bout of covid at the end of February last year. It's made all of my hypo symptoms much worse. I'm really desperate for answers and not getting them.
My gp passed me onto the covid rehabilliatation scheme. They don't understand what long covid is like. They are all about setting goals and meeting them. Long covid for most people, me included means we can do some exercise but are hit two or three days later with extreme tiredness and muscle aches etc which take days to get better. No other problems work in that way!! How can you set goals for that?
I'm sure they are also incredibly overworked but I was told to ask for help but when I did so all I got was an acknowledgement and a note that it had been passed to someone else!!
I really felt I'd found an answer when I read about liquid levo being licenced for malabsorption problems. Now I find it's not any longer.
Oh dizzy864 you really have had are still having a really tough time! I am so sorry for you. The hypo symptoms I can definitely relate to but combined with those covid symptoms, that’s just ultra tough.
Thinking about your hypo though (I can only wish that the long covid lifts very soon 🤞🏻) it would seem to me that somethings blocking it (maybe the oestrogen?) as opposed to not absorbing it? Would that seem a better way of describing it? And maybe it’s not hormone resistance as in the medical definition but somethings obviously stopping them getting into your receptors? I realise you struggle with vitamins etc as well.
I wonder have you tried ndt? You may well have although I didn’t notice that on your previous posts. As I understand it others do better on that than the synthetic. Just a thought which you’ve probably had too. I am now going to some Googling to see if there’s anything out there 🤞🏻🤞🏻
Ahh yes. I had that thought too so I do understand that.
I have seen that some people do better on t3 only. They feel that t4 blocks the t3 somehow. There are some members here that do. Is this something you have considered?
if a patient is persistently symptomatic after switching levothyroxine products, whether they are biochemically euthyroid or have evidence of abnormal thyroid function, consider consistently prescribing a specific levothyroxine product known to be well tolerated by the patient
if symptoms or poor control of thyroid function persist despite adhering to a specific product, consider prescribing levothyroxine in an oral solution formulation
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
When were vitamin D, folate, ferritin and B12 last tested
When you do your thyroid test do you always get tested as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Last 1/3rd of daily T3 dose roughly 8-12 hours before test
Hi,Thanks for that. I thought he might be wrong. Unfortunately, I 've seen several endos that have been far worse than him. Although after nine months and two consultations I am worse than when I first saw him!! But he does at least accept that I'm not overmedicated!!
I do always stick to the blood draw recommended on here.
I did go completely gluten and dairy free for four months a couple of years ago. I was no better. I reintroduced dairy and then gluten and noticed absolutely no difference. I never have problems with actually eating dairy either. I did have a couple of tests for gluten problems and they came back as fine.
My vitamins and thyroid are being tested every four months at the moment as the endo is insisting on them. I'm just unable to increase the levels as I would like - the endo again blames my lack of oestregen. They're due to be tested middle of next month.
I currently take 25mg gentle iron. I've just gone up from 20mg.I take 4000iu vit D plus K2.
70mg zinc gluconate and High strength Vit B complex which includes 250ug Vit B12. I used to take a higher dose one but I can't buy it here so used to get it in the states. I have magnesium in my bath. I've been taking vit C but I've just runout as I forgot to restock
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Hi, Thanks for that. It was very interesting.In Noveember last year, my B12 had fallen to 463 ( 197 - 771 ). ( In May 19 it was 747. ) This is the lowest it has been for many year. I was deficient 25 years ago and have been supplimenting ever since. Six months ago, I ran out of my usual B complex tablets. I'd been buying them in the states. They have a much higher B12 content than any tablets I've found in the UK. I think they were 500ug instead of the 250 that are in my current ones. As my levels are falling, I'll take your advice and suppliment with B12 tablets as well. What do you think would be a good strength to take?
I currently take Health span High strength B complex tablets. They contain B1, B2,B3 and B5 - all 20mg. Vitamin B6 - 10mg. B12 250 - ug, Biotin - 50 ug. Folic Acid - 400ug. Choline - 200ug. Inositol - 20mg. PABA - 20mg
I have no idea what this all actually means. I just look for a tablet with the highest B12 content because I've had a past problem with it. Ofcourse, I also have to have a vege friendly tablet. Should I be looking for something else in a B complex tablet?
Hi, I emailed the endo again. I asked him to take another look. This morning, I've received an email from my gp surgery. It includes a copy of an email from the endo sent to them and copied to me. He states, " I am not aware that thyroxine can be prescribed in a liquid form via a general practitioner." I am also disappointed but not altogether surprised that he also stated that my increase of vagifem from twice a week to four times a week is only for a maximum of four weeks. I was not told this before.
I can't see this as being much help.
I have looked on the NHS web site. There is no reference to liquid levo. It only talks about tablets. I will contact my gp tomorrow morning and ask her about it. If she's not heard of it either, I'm not sure what to do next.
Hi SlowDragon,I sent endo three emails. The last one including a link to the relevant MHRA document. He replied that I should ask my gp and that I should tell her that he has no objection to me taking it. I did so. I got a telephone call a little later from a lady at the surgery who did not introduce herself but told me that my request had been given to her to "research". I was surprised because I'd asked for a call back from my gp. We started by talking about who diagnosed me - endo 9 months ago! She asked me why he thought I had a malabsorption issue - I told her that he thought it was due to lack of oestrogen.
I got another call from her in the afternoon. She told me that liquid levo is very expensive. it is ONLY available if patient has a "gastro intestinal" problem which I don't. I told her that she was wrong. the MHRA doc says, "including" and not, "only". I also told her that I have a history of gastro intestinal problems and was diagnosed three years ago with IBS and bladdder problems. I said only I was never told it could be down to levo tablets and I had no idea at that time that there was an alternative. She then told me that the request should come from an endo and not from me - I agreed! She said she would email my endo. I also emailed my private endo. I told him again why I needed liquid levo. This time, I asked her name. On looking her up at the surgery, she 's a clinical pharmacist. This I had never heard of! Why is a pharmacist making decisions about suitable medications for me? I assume she does not have access to my medical notes - I certainly never gave consent. I've never spoken to her before, she has no idea of my medical history.
Yesterday evening the surgery sent me an email with three attachments. The first was my latest email to my endo. The second was the email that the surgery sent to my endo. It states that "it seeems that it only applies to patients with gastro intestinal malabsorption issues., whereas the patient's understanding is that she isn't utilising the levothyroxine due to low oestrogen. "- This is not what I believe but what the endo has told me! She then says, "I am very reluctant to prescribe levothyroxine liquid instead of tablets due to the fact that this is unlikely to have a positive impact on her condition especially as the cost of levothyroxine liquid far exceeds the cost of tablets. ( liquid _ approx £250 per month treatment versus £2 per month for tablets." Is liquid really 125 times more expensive than tablets? Even if it is, should it matter? This is signed, Clinical pharmacist.
The third email was my endo's response. "The best way to resolve this medical dilema is for you to refer (patient) to the local NHS thyroid clinic who have experience in the use of liquid levothyroxine." Adding they will be able to assess eligibility and funding for this treatment. We do not use it at our clinic.
I'm paying this guy £170 every four months for this!!!!
I had a referral to my local thyroid endo in January last year. I waited almost 7 months for the appointment only to be told - my problems are outside his field of expertise.
I'm left speechless. I really thought this was going to be easy - a straight swap liquid for tablets.
I just don't know what to do. I've been suffering with ever worsening hypo symptoms for the past six years. I've been really ill with shingles, had Covid, suffering with long covid and my second covid jab, eight weeks ago has left me in a lot of pain all the time. I have no fight left in me!!
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