After 11 months I finally saw an endocrinology registrar to go over my blood test results and symptoms. I am on 150mcg thyroxine and 40mcg of liothyronine, after 7 years on NDT which I came off in January 2021 to return to the 'NHS way' of T4-only therapy (the price of NDT was becoming prohibitive plus my GP refused to sign my medical exemption certificate as I was not following approved treatment).
In April 2021, 3 months into T4-only under my GP, I was very ill indeed on thyroxine of 125mcg with FT4 below range and FT3 right at the bottom, although TSH just scraped into range (at the bottom). Thankfully the endo that I was referred to by the GP said I needed combination therapy and over the past 2 years my meds have increased from thyroxine 125mcg/liothyronine 10mcg up to the current 150mcg/40mcg.
Here are my most recent results from April, taken first thing in the morning, no dose since the previous day:
I feel very symptomatic at these levels, the full range of low energy, cold hands and feet, brain fog etc etc. I feel I am crawling along. On NDT my FT3 levels in particular were much higher, always at top quartile of range, and my symptoms improved (albeit never went away). I am post-menopause and recently started HRT, which has at least pulled me up off the ground and allows me a little more of a life.
I saw the registrar and asked what they can do to improve my symptoms. They reviewed my file and said this is above their level so would ask a consultant. The registrar phoned me back to say they cannot increase my dose any further as my TSH is too low and there is too much of a risk to my health. She said my symptoms are due to something else outside of the thyroid and suggested it's social, psychological and emotional factors. I asked what further testing they would do of eg HPA axis, vitamin levels or whatever else their expertise suggests and was told there is nothing further to be done. I am just so frustrated to be told it's all in my head. I truly do understand the concerns around TSH below 0.04, but it's hard to have experienced an improvement on dessicated thyroid that I can't get on combined synthetic therapy.
Rant over!
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Doctors know nothing about symptoms because they don't learn about them in med school. They do not understand that T3 is needed by every single cell you your body to function correctly. So, if there's not enough T3 in your blood, symptoms can occurr anywhere and every where. Which, of course, means that they are non-specific because they are more or less different for everyone - we all have our personal symptom list. But, the possibilities are endless!
Here are my most recent results from April, taken first thing in the morning, no dose since the previous day:
Your TSH is low because you're taking quite a large dose of T3 - same for the FT4. But, your FT3 is pretty low (and that's what's causing your symptoms) considering the size of your dose. So, how long exactly was the gap between your last dose of T3 and T4, and the blood draw?
Of course, another possible cause of symptoms is sub-optimal nutrients. Have you had your vit D, vit B12, folate and ferritin tested? Do you take any supplements?
They have tested my vitamin D level which apparently is in range but no others; I have asked for the full testing to no avail so will need to do this privately. My last T3 dose was 7pm. The problem I have is that, when I have 8-9am testing, I feel very, very poorly without my dose of T3. I have to be driven by my husband as I am full-on shaky, cold, brain can't function etc. It then takes me around 6 hours to return to normal once I take my dose after the blood draw. This has happened on repeated occasions and is the thing that really worries me.
Oh, I do so understand about feeling bad without your morning dose of T3. But surely it's worth it to get accurate blood test results, no? And, it's only about once every six weeks, if that.
Being told that your vit D is 'in range' is just not good enough. You need the actual numbers - results and ranges - because the range is so wide that just being 'in range' is not the same as being optimal.
Yes, it would be a good idea to test the other things privately. Optimal nutrient levels are so important. Not just because low nutrients levels cause symptoms, but also because your body cannot use thyroid hormone efficiently with low nutrients.
Some Endo's are awful. I'm sorry you were spoken to in this way.
Firstly we need to know the time gap between Levo, T3 and this blood test as leaving over 24hrs for levo & over 8-12hrs for T3 gives a false low result.
Next, and actually most importantly what are you supplementing with?
What were your latest results for ferritin, folate, B12 & d3?
Getting these levels OPTIMAL is essential for our thyroid hormone to work well.
You can ask GP or Endo to run these tests or see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. Check to see if there is a blood test companies near you. onedaytests.com/products/ul...
Do you always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Thank you for the recommendations for private vitamin testing; I have asked repeatedly for this but with no success, so I'll do it myself. It was 13 hours after my last T3 dose. As I explained above to GreyGoose, what upsets me is how very ill I feel without my T3 dose, I can't drive, can't think, can't function. I take my T3 dose as soon as the blood draw is done but it takes around 6 hours to return to normal for some reason. I can't totally make sense of it.
EDIT: sorry, I forgot to reply about supplements. I try to supplement with good quality D, B12, C, Magnesium, B3 following recommendations on this website. I tend to forget a lot of the time and in the week before blood tests don't take any.
The reason this forum is as busy as it is is due to the NHS being generally useless at getting us well. You do need to take responsibility yourself and bare some small costs if you want to be well. Sad but true.
Totally agree. I think this is why I felt so insulted as I really do try to have a healthy lifestyle, good diet, exercise etc and am held back by poor health. Thank you as always for your help and suggestions.
Serum D3 74nmol, range 50-174; the endo yesterday said that was fine... I take the Incite 4000 iu but must admit I'm irregular with my vitamins. Must commit!
”There is nothing more to be done”. I wish they could understand and show a speck of understanding about how such a comment is received. Really I think they are dimwits. Do they really think this is the end of any kind of treatment and if they do, don’t they wonder why? It’s outrageous. I was gutted when told similar. Mine was “You can’t take T3 and it’s unlikely more levo will help you”. She was ‘sorry’. Honestly any sign of trouble and they want nothing to do with ‘one’! At the moment I am going with wiser heads in the forum and still hoping for better. No doubt money is short at the moment in the NHS but it will be spent on anything but properly considered hypothyroid treatment! It’s nuts. The NHS is on its knees and this is what doctors are doing? Something to do with statistics probably.
Isn't it strange how 'sorry' they feel. This one kept saying 'I know how frustrating this is' when I said 'so do I just have to live with these symptoms'? I just feel so sad for all of us in this position!
That is definitely going to happen. I saw a private endo (whom I've named to you in chat) and taken on the pain of paying for Armour as a one-off based on his prescription. I so didn't want it to be this way but just want to feel well again and NDT seems to offer a better outcome.
Ok then - just ensure that your core strength vitamins and minerals, those of ferritin, folate, B12 an vitamin D re up and maintained at optimal levels so to give yourself the best shot at switching over and reclaiming back your health and well being.
Thank you, it gives me much more resolve hearing from people like you that I have to get these optimal too; as you say, if I'm paying out, I need to give it my best shot, including those key vitamins. I hope you are well and thank you again.
Do you have problems with your gut at all? E.g. is there a possibility you have coeliac disease, or are gluten-intolerant, or SIBO, or any other issue like that?
If this is a possibility then your poor results could be because of low absorption of your Levo and T3.
What many people on the forum have found is that going 100% (absolutely no cheating) gluten-free for three months can make them feel a lot better, and it might improve absorption of thyroid hormones and nutrients.
If you get no benefit from going gluten-free then you could start eating it again. If your health then declines you would have to come off gluten again, this time permanently.
After trialling going gluten-free you could then try going milk-free (i.e. avoiding milk from mammals).
There are several parts of milk that can cause problems :
milk sugar (lactose)
milk fat (butterfat)
milk protein (casein)
Some people might do well with supplemental lactase (the enzyme that digests lactose), but others may have to give up animal milk altogether.
Personal opinion : Lots of people are far too ready to give up huge chunks of their diet without knowing whether it actually benefits them because they don't do their experimenting in a sensible way. Only give up one thing at a time, starting with gluten. If too many things are removed from the diet then nutrient deficiencies will become a problem and make people feel ten times worse than they did before.
I have had endless stomach problems, h-pylori last year and around 7 years ago. The GP did the 'exclusion' load of tests of stool, bloods etc before saying it's IBS. I have been doing Mediterranean diet of late and have found that seems to improve thing. I must admit I am very wary of cutting out food groups, as you mention, so am teetering on trying gluten-free. Overall I'm quite low dairy and low gluten, but not free. Hmmmm....
I was very reluctant to give up gluten. I got my first benefits from doing so within five days. I felt so much more cheerful, and it also improved my temper enormously.
I've never tried giving up milk products, and I probably never will.
It took a while, but giving up gluten also improved my balance. Although I've never been diagnosed with it officially I think I have a condition called "gluten ataxia".
Five days is a do-able time period that I just might convince myself to try, although of course, it may take considerably longer than that. I think it's just getting into the habit of GF eating; we actually have a fair bit of that sort of stuff anyway. Will try to commit. And thank you for the encouragement
Your dose - 150mcg thyroxine and 40mcg of liothyronine- is already fairly high but clearly still not at a therapeutic level.
What an urrerly disgraceful comment....from a so called expert but one with limited thyroid knowledge.
Medics are supposed to consider symptoms along with labs
The most important reading is FT3 followed by FT4
TSH falls naturally when T3 is added!
I'm high dose T3-only ( currently 125mcg) my TSH and FT4 are on the floor and my FT3 in orbit , a fairly recent heart scan showed a healthy heart and my bones are strong.
You are unlikely to be overmedicated so long as FT3 remains in range and yours is quite low at 47.03 % through the range.
Both Frees need to be approaching 75% for good health....with the caveat that we are all different so this may vary a little.
To suggest the cause is social, psychological and emotional factors is nothing short of a cop out!
We can't tell from these labs if your T4 to T3 conversion is poor since T3 has been added
Do you know if your conversion is poor ( diagnostic test shows high FT4 with low FT3)
Important! Have you optimised vit D, vit B12, folate and ferritin to support thyroid function?
Your serum T3 is too low for your body's needs
Every cell in the body must be flooded by T3 which needs to be available in a constant and adequate supply
And/Or...Inadequate T3 may be reaching the T3 receptors in the nuclei of the cells where it becomes active....an increased dose will likely provide the added "push" to get more T3 to that point and so provide the cellular level required for good health
Low cellular T3 ( cellular hypothyroidism) = poor health/ symptoms.
Try explaining that to most endos and they'll probably react as if you arrived on a broomstick ( been there!!!)
I absolutely love your posts and your bio, always check out what you are posting and I really appreciate everything you have commented. I find I need to be high 5s or low 6s (if you know what I mean) for FT3 to get any sense of wellness. I do have quite a variable FT4 for whatever reason, however, I'm not a bad converter. When I was on thyroxine only, with FT4 of 11.1 (and feeling AWFUL), I still had FT3 of 3.66, which I thought was a good effort by my body. I read an article once saying that the body will work very hard, if in deficit, to maintain FT3 levels. On combined synthetics, I've had FT4 ranging from 15.5 to 10.2 on fairly similar doses. On NDT, FT3 is much higher and FT4 can range considerably but rarely below 15. I'm working on vitamins, haven't had them tested in years but do have the whole selection in my drawer as recommended by the excellent experts on this site. I now need to start taking them again. And yes, this morning really made me see red... and feel let down... and tearful... and then just SO tired! Thank you again for the support and keep up the good fight
My thyroid gland is now 'ragged' in the words of the ultrasound person, with nodules and very small in size, so as you say, pushing out T3 under pressure for 2 decades takes a considerable toll.
Yes, the TPO and Tg have been tested regularly. Most recent ones are :
Thyroid peroxidase antibodies 4.3 (range 0-5)
Antithyroglobulin antibodies 5.27 (range 0-40)
And yes, I'm restarting on Armour today. Unfortunately the private consultant sent a letter detailing everything to my GP after I expressly asked him not to. That's a fire I'll have to put out if they start raising 'issues' again about my unauthorised treatment programme.
Thank you DippyDame. Yes, I've been wondering if that number at the top of 'normal' indicates Hashis. How lovely to have a GP that accepts patient autonomy, mine are extremely deterministic (and determinedly so).
I loved reading that article. Before my imaginary hypo symptoms forced me to give up my career, I spent 20 years as an ethics lecturer, having gained a PhD on professional trust.... ahem... yep, that's my specialism! My findings were that professional trust arises from 1. 'functional' competence - do you possess the technical knowledge, expertise and experience to do your job well, 2. 'interpersonal' competence - do you possess the appropriate 'person' skills to engage with your 'client' or 'colleague' in a way that your functional competence can be fully enabled, how do you deal with people on a person-to-person basis? With friendship and support, or something else? and 3. 'local' competence - do you have sufficient or excellent knowledge of the local environment in which you work, in terms of institutional factors, managerial factors, everyday people and organisations etc. Another commonly recognised factor in trust development is whether you can move outside of your given role to think and help more widely, ie beyond the boundaries, in a self-chosen way, ie this suggests a virtuous person. Simple stuff like timeliness, responding to emails etc also feed into this. When we deal with strangers where there is likely a knowledge imbalance, we want to know about them as people in order to trust them. I should say that professional capture and institutional capture are well-understood to subvert the delivery of trustworthy 'service' or care. That's just a summary
How lovely to have a GP that accepts patient autonomy,
Nothing lovely about it....that is their job and unlike some practitioners they understand that.
Autonomy is the first pillar of medical ethics and is the right of competent adults to make informed decisions about their own medical care. The principle underlies the requirement for medical practitioners to seek the informed consent of their patient before any investigation or treatment takes place.
Started Armour yesterday. It's equivalent to two-thirds of my current T4 dose and one-half of my current T3 dose that the endo has prescribed, so feeling rough today. As you say, I need to give it time.
Sorry to derail. I just wondered if you self-source your T3 meds, or have you found an amazing endo who is happy to prescribe that amount?
I've just managed to persuade my endo on a phone call today to up my T3 prescription to 60mcg per day (like you, I just take T3), and he was actually very supportive on the phone (which surprised me). Obviously I'll wait until the letter has made it's way to my GP and I have the prescription in hand before I consider it a done deal!
Asking me if I want anti-depressants, or telling me that is what I need, is a standard method of doctors telling me to get lost, and I think that is true for all or most women with invisible or chronic health conditions.
I've been insulted, laughed at, humiliated, had eyes rolled at me, been scowled at, been shouted at,...
I think that the NHS was designed by men, for men.
Thanks and yes, I've had the whole lot thrown at me too; it's the gaslighting that I find particularly toxic and undermining. As you suggest, if I had been a male patient having that conversation with the endo, would the word 'emotional' have been used? I am the main carer for my 23 year-old autistic son and the moment that information comes out, you can almost hear the 'ah, carer burnout' assumptions clanking around. I decided to be polite in response, but husband says he would have been screaming down the street (I was out walking at the time.... for context) if someone had said that to him!
Funnily enough the NHS was allegedly brought about for child bearing women. Too many were dying in childbirth and the new generation were poorly (post war) and also dying. Men were killed and many came home badly injured from the war and women were bringing up families with no breadwinner so therefore in poor health and poverty. Prior to the war men got the (private) healthcare because they were the breadwinners and needed to keep working to feed their families. The women were dying of things like infected haemorrhoids. However I would like to point out that it looks like women were just breeding machines. The NHS was designed like the forces. Kind of reinforces that male stereotype within the NHS organisation. When you work in the NHS it’s there for all to see. Nothing much has changed, or at least not enough. With this as the background (rampant misogyny) it’s hardly surprising we are still treated as second class citizens - especially in diseases which are mainly suffered by women. We have always been more easily written off - for the greater good. Past child bearing? We are barely tolerated in NHS terms.
I don't know in which country this happened, but years ago I read an anecdote from a woman who was being encouraged by a male doctor to get a hysterectomy. She was told not to worry about the after effects because she would still have her "playpen" after the surgery i.e. her vagina.
I think it is probably the most demeaning, belittling, insulting, and misogynistic comment I have ever read.
By the 1960s women were being refused hysterectomies (and offered all sorts of ‘Mothers little helpers’) and ‘private’ doctors were doing good trade moving in there because of this. A nice little earner for doctors. However it’s my belief that many women did not want more children and contraception was still ‘spotty’ then’. Again not being listened to. It’s a potentially terrible price to have to pay later on in life (lack of hormones) but it shows just how desperate women are to feel better. Even at the end of the last century I was amazed at how many women were prepared to do this so they could get a rest. Maybe we should have single sex hospitals, like single sex schools. Women who attend single sex schools allegedly do better than mixed sex. It might release female doctors from the dreadful misogynistic systems continuing today in the NHS. I would be happy if men suffering from hypothyroidism joined us.
I don't know. The way the requirements are written initially appear clear - just needing thyroid hormone medication. But you have to go through all the wording of the legislation to get anywhere near a definitive answer. Even then, there could be legal precedents.
Thank you Helvella, may I take the chance to thank you for all the help and advice you provide on this forum, I always check your posts. On that note, the one you mention below seems to have escaped my attention, so I'll get onto that immediately
I don't know the legal details but the NHS Business Services Authority refer to "myxoedema (that is, hypothyroidism which needs thyroid hormone replacement)" with no mention of doctors having descretion or a need to take a particular form of thyroid hormone.
When did this NHS Business Services Authority quango come about? No wonder there's no money for clinical care. Not asking for a reply, just having a moan.
Oh my goodness, I've only read that abstract and I'm already shaking with anger. It's the worst type of ignorance and passing the buck. I'm not surprised that particular sub-group seems to be the worst 'offenders' in SSD tendencies - they are the most vulnerable to poor treatment in many respects. And yet this got through the peer-review process?! I wonder who the peer reviewers are? What corrections, I wonder, did the authors have to make prior to publication? Hmmmm.... angry face and shaking fist!
And another thing! In line with the comments on that piece, there are so many ethical issues with academic paywalls. I'm an academic myself, 25 years' experience including on the research ethics committee, left my job last year as the thyroid problems - apparently in my head - mounted up. A great deal of academic research is funded by public money and it is a well-known argument that research funded by public money should be made publicly available. And as for the argument about patients giving up their time freely to receive no access to the paper... well... all they will have got are platitudes that the ethics committee signed off the research and, if they're lucky, an Amazon voucher (I'm sure they didn't). Of course respondents should have access to the final paper. But what absolutely, definitely happened in this is case is they were MISSOLD the purpose of the research. And that is out and out unethical. Rant over...
It is interesting reading about health care in other countries. I am in the United States and fortunately under a health insurance plan through my employer. Although far from perfect, it seems I do have a few more options than those under the NHS.
We definitely has the same problem with gaslighting, especially of women. A man and a woman can present with the same symptoms and the woman will be offered antidepressants and the man will get further testing to find the cause of the symptoms. I don't even think doctors, both male and female, are aware they do this. I was told I was depressed because I had gotten fat! I wasn't even depressed; just hupothyroid.
However, the advantage of the insurance system is if you find a good doctor who is really trying to figure out why you have symptoms, they can push the envelope, so to speak much further. There is no issue with prescribing NDT or T3 if that is what is needed. If a doctor has tried different, say medications, and a more expensive one is the one that works, the most the doctor needs to do it get it authorized by the insurance company.
Unfortunately, we have more and more people pushing for more government control over our health care. The more the government has control the fewer choices and freedom the patients and doctors will have. An example is in our school systems. Although the politicians and teacher's union will dispute this, in most cases, our students who come from private school are generally better prepared for college, career, etc than those in public schools.
We also have an issue with pharmaceutical companies giving millions to our medical schools....hmm, no conflict of interest there. Our doctors don't need to think anymore, they just need to perscribe the right drug.
How insightful , I am in US also and go to a functional medicine doctor to get care. It is very good care..
I get discounted labs , thru insurance but pay for everything out of pocket since my care doesn't fit the insurance companies script! It's frustrating to pay so much for insurance and have little say in where I can go for care unless it fits their criteria... Things here have gone screwy with medical care , it's all big Pharma and corporate medicine....
Anyways , on we go to try to get care we need .. wish you well...
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Reduced Levothyroxine - Hairloss started...
Quick NHS Blood Test Query
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Has anyone experienced a major improvement by taking NDT as opposed to Levo and/or Lio?
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