Thyroid UK
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Living in a rut ☹️

Hi, I have been on levothyroxine for 15 years. I have had 3 children, but since having my youngest daughter (now 6years) I have not felt right. I have been asking my doctor for a referral and finall got one last year. My problem is, I look okay am healthy and have a good lifestyle. However, the outside is not what I feel inside.

My blood tests have been in the normal range for years, however I stopped taking ‘Solgar Kelp’ last year and my blood results have shown a significant difference.

I had a blood test before Christmas and one after, both showing my TSH to be 49.50 and T3 3.7 T4 6.5.

My specialist wants me to come in and take 750 mcg in a morning on a fasting and see how my body reacts. My current dose is 50 mcg one day and 75 mcg the next. I’m not happy to do this and would prefer a full blood count to check other levels as my last one was done in July with raised Oestradiol and tpo.

I would also like to change to NDT, but can not work out how to order this in the U.K.! My specialist will support me if I change, but can not prescribe it? She has said that many of her patients do well on it.

I feel in a rut. My legs cramp, I’m exhausted, feel very low and as if my lungs are crushing. Please help if you can.

Is there any point in contacting a private doctor? Can the year prescribe NDT without the hassle?

Thankyou in advance 😔

46 Replies
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That sounds like your doctor thinks you aren’t taking your levothyroxine. Which is arrogant of her in the extreme.

I don’t think I quite understand - have you always only been on 50-75mcg of levo or have you been on higher doses? Because without question, you need to be on a higher dose. I don’t understand why your doctor isn’t putting your daily levo dose up to say 100mcg a day. Am I missing something?

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Thankyou for your quick reply. Yes I was on 125/150 last year, but for some reason they won’t give me enough. I keep being told I’m tired as I have 3 children, run a campsite and have a hectic life, but I’m in bed now and tend to sleep when the children do 8-7am each night. I’m only 38 years old and just feel so sad that I can’t get the doctors to listen to me!

The one thing I did note, was I had a new formulation of thyroxin by a brand I hadn’t had before. Stupidly I threw the box away and didn’t think much about it and now wonder if that was the issue?

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Ah, it could have been. For all sorts of strange reasons, people do occasionally find they don’t tolerate some brands as well as others.

I can only assume that you have a doctor who’s trying to keep your TSH from being suppressed, when that doesn’t actually matter at all.

Is there not another doctor you can see in the practice? You urgently need just a simple raise in dosage.

Sadly, this is why some of us here do end up going it alone with thyroid meds - sourcing our own and doing our own private blood tests to monitor. But that’s very much a last resort (not least because it’s not a cheap option but also because it can feel hard to do something without your doctor’s support.)

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How arrogant of doctor to tell you you are tired when they have cut your Levothyroxine by 100mcg

You are now extremely under medicated (not surprised)

You probably have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies. (90% of primary hypothyroidism is due to autoimmune thyroid disease)

If so taking kelp was very likely NOT a good idea

You need to tell GP about kelp

It was possibly suppressing your TSH. So then GP reduced dose.

thyroidpharmacist.com/artic...

drknews.com/iodine-and-hash...

So how long since your dose was cut?

Levo needs increasing back up in 25mcg steps (retested 6-8 weeks later each time) until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Different brands can really upset some people. Was it Teva?

Highly likely to have very low vitamin levels as result. Ask GP to test vitamin D (especially as you have stopped taking supplements) , folate, ferritin and B12

Leg cramps can be low magnesium

Lungs crushing may be low ferritin (air hunger)

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

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Thankyou, this is all interesting. My dose was cut in July 2017. I had all my full bloods and levels checked then and all was good, however I was on the supplements. I know about magnesium and potassium to help absorb. Also realise Vit c and d are important. I just felt I needed to stop taking everything to prove there was something wrong and I was only just keeping everything in check by doing lots of reading and spending a fortune on supplements.

My tests showed I was okay absorbing in July, it is only now after 7 months of my dose changes and not taking any supplements, that everything had gone bonkers.

I’m so silly to have thrown the medication box away, I hadn’t realised about the different manufacturers of thyroxin until I started doing research. It was a 75 mcg box which I hadn’t had before. I send to have 50’s and break them in half.

Please can someone answer my question about getting NDT and help with private doctors/prescriptions, thanks

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You must correct low vitamin levels first and get TSH down

You need urgent Levo dose increase and vitamin tests

Strictly gluten free diet likely to help too

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If it was a 75mcg box it was probably TEVA, I think they might be the only manufacturer that does 75mcg dose in the UK.

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Don’t beat yourself up over the throwing out a box. I have a friend that threw out £22 k worth of her wedding jewellery by accident. Do you remember the colour of the box? Google U.K. brands and then press google image and it should be there Unless I read it wrong this was the brand you didn’t get on with? We all make mistake. And I tend to think they are only mistakes if you don’t learn from them.

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Just order NDT online I did and it made a great difference to me and how I feel.

Have your bloods tested down privately it's what many people on here do.

When you receive your copy just post the results and you will be helped to get better.

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Do you mind me asking who you order NDT through please. Is it costly to get bloods done privately? Thankyou

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Thriva, Blue Horizon and Medichecks. Thriva have 50% this week but I’ve only just heard about them. I use Blue Horizon. Medichecks usually do discounts on Thursdays. £99-£159. Thyroid 11 is the most popular I believe, but self explanatory on their websites. If you do the finger prick yourself. They have a list of hospitals that will draw blood for you at an additional price.

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Thank you this is all very useful. I’m hoping that my endo will respect my choice not to take 750 mcg in a morning on a fasting and let me up my dose instead to 75 and then 100 gradually. Once this is stable and my bloods are okay, I will move over to NDT but will order now to make sure it arrives on time.

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750mcg? I’m hoping that’s a typo.

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yes she wants me to take 450 a weeks worth in one morning. My typo, but still completely bonkers amount!

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I’m pleased you think that. Has she backed it up with any written periodicals? Or is she thinking to just mess with your health on a whim? I’d report her if she can’t after getting it in writing. It angers me that someone is so blasé about someone else’s health/ life. Has she done that to someone else? She could do that to someone else if you don’t do anything. I know it’s not fair on you but the next person may not be as strong / please report her to her manager. 💜🧡

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I’m going crazy with figures! Just Re-read the letter from my endo and it is 750 I need to take, but this is a strange amount due to my current daily amount of 50/75 on alternate days.

I get what you are saying, but as long as I put in writing why I don’t feel it is acceptable to take that amount and also the serious risks involved. If she respects that and helps me with further full bloods, steady increase and moving over to NDT with careful monitoring, then I feel that she is trying to help me.

I do know another endo in the same hospital that my sister in law sees, so I can’t ask her advice too on what I have been asked to do.

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I would, maybe as an anonymous person or ‘for a friend’ it’s confidential so unlikely to get back to current doctor. But great she’s willing to do it your way. I wish you the best.

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Most of your symptoms will be due to undertreated hypothyroidism - but it is very likely that you also have low B12, low Vit D and low ferritin levels which will also make you feel unwell.

Would be worth finding out.

The other thing that occurs is whether you do in fact have some absorption issues - possible coeliac disease for example.

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That’s all very helpful, thankyou.

I have always had an issue with gluten, but I dishve all of that checked last summer, when my levels were in range and all fine. I was taking B12, zinc, fish oils and kelp, but came off everything as I felt my doctors thought I was lying about my difficulties. I have been spraying magnesium oil onto my skin and having salt baths this week as feel so rubbish.

Unfortunately I have been referred to a specialist as my dosctor would not listen to me in my surgery. I went to see a locum and baffled her, then finally got my referral. Only waited 5 years!

My doctor at the hospital is very helpful, but I’m concerned that by taking a weeks worth of my dose is dangerous and I’m not happy about it at all.

Do you know how I can’t go about getting NDT?

I’m going to check my full blood count again before I go any further as I’m wondering if by not taking any supplements has made a big difference?

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Taking a week's worth of T4 in one go isn't dangerous, it's ineffective.Your body will see the huge dose as something to get rid of asap, and it does it through rT3, not T3 production. So the benefit of the T4 isn't spread over the week, as much of it is either peed out straightaway or converted to inactive rT3.

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Like I said before, have you bloods tested 1st. 2nd post the results on here with what you were taking at the time of the test. 3rd Wait for replies and act on them in your own best interest.

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Forgot I was taking Vit D too last year!

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I would refuse to be force fed 750mcgs of levothyroxine all at once. If you always take your levothyroxine then tell the Endo and be adamant about it and refuse to let them experiment on you. I had quite a few doctors accuse me of not taking my levothyroxine and it turned out the levothyroxine was faulty and the manufacturer had their license withdrawn but no apology to me!!

I think doctors need to be much more vigilant about problems with the manufactured hormone tablets than they are. Give your Endo a copy of the 2013 MHRA review of Levothyroxine. They don't seem to be aware of the historical problems with levo and blame the patient instead.

gov.uk/government/publicati...

gov.uk/government/uploads/s...

Apart from the tablets quality it's quite likely that low nutrient levels, absoption problems or gluten intolerance are the cause. In fact taking levothyroxine itself is the single biggest contributing factor to SIBO, small intestinal bacterial overgrowth. So the levothyroxine itself may be contributing to absorption problems.

You could give your Endo a copy of this document about SIBO and levothyroxine and discuss the possibility of poor absorption due to a range of factors.

SIBO and levothyroxine

ncbi.nlm.nih.gov/pmc/articl...

You could try taking vitamin C to aid absorption of levothyrxoine

Vitamin C improves gastrointestinal absorption of levothyroxine

ncbi.nlm.nih.gov/pubmed/246...

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As they have cut your dose by 100mcg per day (from 150mcg to 50mcg )of course the TSH has gone up.

Insist on steady 25mcg dose increases, retesting 6-8 weeks after each increase

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Sorry, I missed the whole of the thread. Well if levo dose has been cut in half then no wonder it's made you ill. Why on earth was dose cut in half?? Slowdragon is right, increase by 25mcg retest in 6 weeks then repeat etc until you are on the correct dose. DO NOT let Endo experiment on you. I rather like helvalla's idea.

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My levels were all showing as ‘with in’ range and although I was saying I didn’t feel right, my GP kept lowering due to my blood tests. I wasn’t getting hypo symptoms so just felt frustrated. I ended up taking more than I was meant to so that I could function. However since July I have stuck to the 50/75 dose and no extra supplements and it shows that the dosage is completely wrong. That’s really why I’m considering going to a private doc through thyroid U.K. to get this sorted before I’m an old lady!

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You mentioned that you have TPO antibodies, although you don't say what the lab range is for them, I presume they were higher than the lab range? If that's the case then it's likely the autoimmune disease caused a temporary reduction in TSH and the GP altered your dose based on the TSH. At least that's my guess but without seeing your consecutive blood test results I can't be sure.

Professor Toft recently released a new document describing why some hypothyroid patients need a low TSH and higher than normal FT4 to achieve a reasonable amount of T3.

Professor Toft - Counterblast to Thyroid Guidelines

rcpe.ac.uk/sites/default/fi...

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My results for TPO antibodies in July 2017 were, 26.0 with the range being 0-8

Also estrogen hormone 270 with range 73-147

My doctor didn’t flag any of this at the time and just said all my results were showing as normal. It is only now that I have asked for all of my print outs of bloods that I’m seeing issues.

As my full bloods were done such a way back, I’m requesting to have them done again to see why my TSH has gone from 0.29 in June 2017 to 49.50 range (0.34-5.6)

I kept saying they were under dosing me, but literally felt as though I was banging my head agains a brick wall!

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Bumble79,

I can't believe I just read that: My specialist wants me to come in and take 750 mcg in a morning on a fasting and see how my body reacts.

How about proposing a game. (Based on so many bawdy, raucous drinking games.) You take 50. She takes 50. Repeat.

If it is safe for a patient with thyroid issues to take 750 mcg, it would undoubtedly be even safer for a fit and healthy specialist. Surely? And if not, why not?

(Yes - I know the excuses "But my thyroid is still making thyroid hormone". Sorry, not good enough.)

I'd like to see the WRITTEN Patient Consent - with full explanation - so that it is INFORMED consent. And if you did go ahead, make sure you have your copy, signed by specialist, safely stashed before going ahead.

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Thank you. I totally agree and won’t be taking my doctors advice, however it is difficult to know what to do. I have waited so long for a referral to endocrine, but now have it and still no help.

If I self medicate for now, taking 100 which I feel is what I need, and ask for my full bloods to be done to check vits etc in 6 weeks. Only issue is I feel as if I am going down hill quite quickly and don’t want to do the wrong thing.

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Putting the dose back up in 25mcg steps is a good plan

But, You must get vitamins tested. After so long on completely inadequate dose your vitamin levels may be dire and need immediate attention.

Post with Low vitamins due to under medication and detailed advice on supplements

healthunlocked.com/thyroidu...

Low vitamins causing low TSH, high FT4 and low FT3

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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Increase in 25mcg doses or you might end up feeling unwell if you up the dose too quickly. Big changes in thyroid hormone either up or down can make us feel unwell too. Stick to a formulation of levothyroxine you know suits you until you've sorted this out. Lots of people have had problems with TEVA so for now I'd avoid it.

Too bad about Endocrinology and your experience but as many of us have discovered, to our cost, they are mostly diabetic specialists and not in the least bit interested in thyroid patients. NHS funding is all toward diabetes, smoking, heart conditions and obesity.

Thyroid conditions haven't even made it to the bottom of the NHS agenda which is a pity since 1 in 20 people in the UK suffer from a thyroid condition but no money for sorting out (mainly women's) hormonal health.

Since we're not imminently dying, the fact we stay ill for 20 years or more contributing to relationship break down, inability to care for family while debts mount up, unable to work is really of no interest to the NHS, the government, CCG's or local GP practices.

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How exactly does she expect your body to react to a massive dose of a storage hormone? Or are you going to sit there for six weeks waiting for something to happen? It might make you gag a little, but I can't imagine anything else happening. Is she quite right in the head?

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greygoose,

Accounts of hospital treatment of levothyroxine overdose support the low level of risk, but also highlight possible danger - most particularly about 48 to 72 or so hours after ingestion. The peak of T3 from taking T4 is usually at around 48 hours. Which has seen many overdose patients having been sent home apparently well and then suddenly returning with their most severe symptoms.

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The way it was said, it sounded as if the endo was expecting some sort of instant reaction. Something like Dr Jekyll and Mr Hyde, or something. But, I think the real explanation is that even the endo had no idea what she meant. She was just winging it! After all, she had to say something, and one load of rubbish is as good as any other! And, it was only a patient she was talking to, and everyone knows they're too stupid to understand anything! Pft.

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Yes totally agree. My endless is lovely, but at the end of the day a diabetes specialists! SJ does look at ‘Thyroid UK’ website for support, but obviously not that confident in what she is telling me.

Because I look healthy, that is my downfall. It always has been unfortunately as I sleep loads, eat well, drink rarely and always get up in the morning and sort myself out for the day.

Appreciate your reply, thankyou

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I think looking well is a problem for most of us. Even if we manage to convince doctors we're ill, we won't manage to convince friends and family or the people at work. It's a constant theme, on here. :(

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I totally agree. I’m all for homeopathy and natural remedies for my children and my self, so why on earth would I do that to my body. Thank goodness I didn’t just agree and take her advice without looking into it! That’s really why I feel the need to see a private specialist as I’m not getting anywhere!

I have requested the updated doctors list from Thyroid UK. I’m based in Somerset, so if anyone on here knows of a doctor that I do t have to travel to London to see, it would be appreciated. Thank you

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There aren't any 'natural remedies' for hypothyroidism, if by 'natural remedies' you mean using food and/or supplements. You need thyroid hormone replacement. Which is more or less natural, depending how you look at it. Of course, levo is synthetic. But, synthetic doesn't automatically mean bad. It is the same as the hormone your thyroid makes, just made in a lab rather than a gland.

NDT is touted to be 'natural'. The actual hormone does come from a pig, but apart from that, it's as unnatural as levo, because it's processed and formed into a pill with fillers to hold it together. But, the 'natural' hormone doesn't mean it's better than synthetic. Personally, I couldn't tolerate NDT, and do better on synthetic T3.

What people were questioning was the idea of taking so much hormone in one go, not the fact that it wasn't 'natural'. Hormones need to be treated with respect. Not too much and certainly not too little. Which is something doctors seem to have trouble getting their heads round.

There's absolutely no guarantee that a private endo would be any better than an NHS endo. For the most part, they all sing from the same hymn sheet. And, they're all equally ignorant about thyroid. Doctors that actually know what a thyroid is, are very thin on the ground. So, make very sure that you know what your 'chosen' endo is like - attitudes towards NDT, TSH and T3 - before committing yourself. Or you won't be any better off thyroid-wise, and a lot worse off pocket-wise! :)

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Be aware that even private isnt always any better !

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Justcto back track a little to your supplements. Many of us take supplements because our vitamins etc aren't up to scratch to help our thyroid do what it needs to do. So if we stop them then that doesn't happen. So you need to continue your supplements as when you stop they start decreasing again and I understand some can drop rapidly.

It may be possible though that some will be fine with a maintenance dose but I don't expect it's easy to suggest what that may be as I expect we are all different with that. Try upping your supplements again and see if that makes you feel better.

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Thank you, yes I agree, I am going to start bs k taking Vit d, Vit c, more bananas and the magnesium spray. I did take fish oils, but listened to a radio 2 phone in about how they are all rancid. This completely put me off! I was taking ‘Eskimo’ and then changed to boots high strength ones that are 3 for 2 and was advised exactly the same?

I haven’t stopped taking zinc and do avoid wheat as Muchelney as possible and clean juice.

I’m going to take 100 mcg for a month and then ask for repeat bloods.

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Thats quite a jump up from 67.5mcg to 100mcg daily. If you find it too much just cut back to 75/100 alternate days.

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yes agree, maybe 75/100 then on alternate days, but I wont take the 75 tablets, will ask for 50's that I break in half.

Also thankyou for advice on NDT. I realise it is not 'natural' but I haven't been doing well on the Levo for years, just controlling it with healthy diet and supplements.

My endo is very helpful in that she can not prescribe NDT, but will support me if I choose to and monitor carefully. She has advised me that many of her patients do well on it. So that is helpful.

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I have been taking Fish Oils for over 20 years. Keep them in the fridge.

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In answer to your question about getting NDT, it's very difficult. At one point I saw a private doctor from the ThyroidUK list, who initially told me he prescribed NDT, but when it came down to it he didn't!

I now self-medicate - buy my own NDT from overseas, and monitor my dose with mail order blood tests, pulse, temperature, and symptom notes. Many members do the same.

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