Hi group,
This is my first post. My girlfriend was recently diagnosed with clinical hypothyroidism and prescribed levo under the NHS. She complains every morning and feels like nothing is getting better.
Are there other private/alternative medications anyone has tried/can recommend?
I would be happy to hear any recommendations anyone has that might work!
I am sorry your girlfriend has hypothyroidism. Many on this forum cannot improve on levothyroxine (I am one).
Levothyroxine (known also as T4) is an inactive hormone and is supposed to convert to T3 (liothyroinine). T3 is the 'active thyroid hormone needed in our millions of T3 receptor cells, brain and heart have the most.
In the past we also had the option of NDTs (natural dessicated thyroid hormones that saved lives from 1892 onwards) but for some unknown reason the 'experts'! removed this from being prescribed - without notiice and caused immense worry to those who had recovered their health.
Other members will respond when they read your post and I am glad that you are able to enquire for your girlfriend because when we're unwell we cannot think properly due to the symptoms or maybe the replacement hormones.
If you contact Thyroiduk who are behind this forum they have a list of private doctors.
Thanks Shaws, I have heard a lot about Thyroid UK and am very interested to find out who is the best person to speak to! Are there any active community events or engagements to learn more? I have always been one to dive into the detail and try learn everything about the issue to get better fast!
Welcome to the forum
How much levothyroxine has your girlfriend started on
Standard STARTER dose of levothyroxine is 50mcg, but sometimes people are started on higher dose
Dose levothyroxine is usually increased slowly upwards in 25mcg steps over several months. It’s not a quick fix.
Each dose increase takes 6-8 weeks to get use to before bloods are retested
Which brand of levothyroxine has she started on
Many people find different brands are not interchangeable
Teva brand upsets many people but others find it the best
Does she have any recent thyroid and vitamin results from when diagnosed that you can add
Thyroid levels should be retested 6-8 weeks after each dose increase
Very important to always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Also very important to test vitamin D, folate, ferritin and B12 at least once a year
If not been tested yet, request testing at next GP test
Very common to have low levels and need to supplement
Far too frequently GP only tests TSH and this is completely inadequate
Also very important to know if cause of her hypothyroidism is autoimmune thyroid disease, by testing thyroid antibodies
About 90% of all primary hypothyroidism in Uk is due to autoimmune thyroid disease .
GP should have tested thyroid antibodies at diagnosis, but often don’t bother
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
plus both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
Thanks for these slow dragon. Is there any place to track and manage your blood results or is it best to get a book to write down and keep track of?
Ring binder. You end up needing filing tabs for different test results and notes etc.
Ive just made a line chart with the software on Word entering all the values as the % of range rather than the absolute values. Not sure yet if that will be useful because some factors want to be high in range (F3) and some low in range (TSH) but it at least means everything is visible on one doc.
When the body starts to run short of thyroid hormones it makes certain "adjustments" to cope with it. Just as an example, one of those adjustments is to raise cortisol. If cortisol has been raised for a long time it can also take a long time to lower cortisol again once thyroid hormones are given.
Partly as a result of this, it is standard practice to start patients on a low dose of thyroid hormone (usually Levothyroxine), and to retest levels of hormone every 6 - 8 weeks. If more thyroid hormone is needed then dose would be raised, and more hormone tests would be done another 6 - 8 weeks later. (It might be a bit quicker than 6 - 8 weeks in the early days.) Then keep adjusting dose, and retesting levels after 6 - 8 weeks, until levels are right for the patient and they feel well.
Doctors have a habit of starting patients on too low a dose, and don't make arrangements to re-test after a reasonable length of time to see how they are doing - or they make the patient wait 3 months which is far too long.
One thing to be aware of is that doctors usually raise and lower doses by 25mcg amounts, which is fine in the early days when doses are too low, but is far too much when the patient's perfect dose is (for example) 137.5mcg and their current dose is 125mcg. The body may want a dose increase or decrease of just 12.5 mcg.
Another problem with hypothyroidism is that it affects the production of stomach acid. We get indigestion, acid reflux, and other gut problems. As a result of the low stomach acid food isn't broken down into its component parts very well and we end up with low nutrient levels. Supplementing to improve low levels of vitamins is essential because the symptoms of hypothyroidism have an awful lot in common with symptoms of low nutrients.
The usual treatment for being hypo is Levothyroxine. Some people do brilliantly on it once their dose is right. But others struggle. Unfortunately, many doctors view hypothyroidism as a simple disease suffered mainly by women, and all the patient needs is little white tablets , and then they should go away, so getting taken seriously is very difficult.
There is no natural alternative to thyroid hormones. There are only three possible treatments - Levothyroxine (also known as T4), Liothyronine (also known as T3), and NDT (Natural Dessicated Thyroid - also known by some doctors as DTE - Dessicated Thyroid Extract).
Everyone starts on T4. In the UK getting T3 or NDT is very, very difficult, and in many cases almost impossible.
Thank you Human Bean. Are there any brands of medication you have heard best? We are now starting to look at going private and would be great to know which brands to suggest/ask for!
Sadly no. What suits me might not suit your girlfriend and vice versa. For example I had a very bad reaction to Teva Levothyroxine and ended up raising a yellow card against the brand (a sort of official complaint). Other people love it.
Beware going private. There are few private doctors who know what they are doing either. The best thing to do at first is to get a full set of bloods done privately and then come back here with the results. You want TSH, FT3, FT4, 2 types of antibodies, Vitamin D, Vitamin B12, Iron, Folate and Ferritin. Armed with all those results the people here will be able to help you more than a standard GP or Endo.
Blue Horizon do these full thyroid tests. Have a look on the Thyroid UK web site, they have a section on tests and discount codes for you to use. Recovery from thyroid issues takes a lot of time, patience and learning. You can't cut any of those out, especially the learning. If your GP won't play ball you can buy Levothyroxine relatively cheaply and do it yourself, but that's a last resort.
You are not at the stage to look towards T3 or NDT at the moment. You must optimise your vitamins and minerals and Levothyroxine first because if you can make it work, it's the easiest treatment available. The others are more fussy and demanding.
Which brands of thyroid hormones suit individuals is all a matter of trial and error. What works for person A might be terrible for person B.
It is a very good idea to keep a full record of info on brand of thyroid hormones taken, type, and dose. Also, keep lists of symptoms, and score how bad they are each week or month or a few weeks after prescription or or or brand or dose change.
For example, suppose one symptom is headaches. It might be scored from 0 to 10 i.e. 0 = non-existent but a change in brand might make them return and score 4 out of 10.
List of hypothyroid symptoms, and please note - nobody gets them all :
"Short" list : thyroiduk.org/if-you-are-un...
Very long list : hypothyroidmom.com/300-hypo...
The reason thyroid disease symptom lists are so long is because every cell in the human body needs thyroid hormone to work correctly throughout the life span of the cell. Some cells are more sensitive to shortages or excess levels than others.
...
I would advise against going private, at least for 9 - 12 months. Thyroid information from the medical profession, either NHS or private is often dreadful, and doctor training is very, very poor. I would suggest getting help from this forum as much as possible and if things are still bad after taking on board the advice from here then you could spend money on a private doctor, if you still wanted to.
...
Some success stories...
healthunlocked.com/thyroidu......
healthunlocked.com/thyroidu...
...
For info on companies that get a mention on this forum a lot. You'll also find discount codes :
thyroiduk.org/help-and-supp...
The two most popular thorough tests are
medichecks.com/products/adv...
bluehorizonbloodtests.co.uk...
Thriva is another company that some people use, but I have no experience of them myself.
They allow people to personalise their test packages but be aware that they set up a subscription on the assumption that you want to do the same package every three months. You can cancel the subscription as soon as you've done your first test (I think). :
app.thriva.co/blood-test-su...
Other things to take into account :
The companies that offer doctor comments usually just offer the same type of advice you would get from a GP. So, for example, they suggest a low TSH suggests over-medication or hyperthyroidism even when Free T4 and Free T3 are really low in range. Usually you can refuse doctor comments if you wish.
Depending on the test, they can be done with finger-prick testing, which some people manage easily, but some people can't get anything out at all, or you might have to pay for phlebotomy (what doctors and nurses do to get a blood sample out of your elbow).
To get the most consistent results there are certain rules regarding time of day, fasting, whether (or when) to stop taking supplements, when to stop taking thyroid hormones, and other things...
If you choose to go ahead and do any testing of the type described above, please decide what you want to do and check with us before spending any money.
If your girlfriend is still only on starter dose levothyroxine it’s far too early to consider other options until she has tried higher dose levothyroxine and got all four vitamins tested and optimal
Thank you slow dragon for both posts, very informative and helpful. Are there any good resources to read about which vitamins she should be taking and other levels to be tracking beyond TSH, T4, T3 and TPO? Also is there any place to understand where the optimal range for my girlfriends age and background is? I have been many different versions of where the range should be.
HiWelcome i would follow what SlowDragon has suggested and if you can go private do so. I was out in the wind until I found this forum got helpful advice.
Good luck
Jude
Thank you Jude. We have been very interested to go the private route especially given the lack of support and real guidance with the NHS. I will go through the links and see if we can find her a specialist to get her back to good health
No worries.
Hi. If your girlfriend was only recently diagnosed it will take some time for her to feel better, depending on how symptomatic she was when diagnosed. Levothyroxine is a hormone that your body needs to adjust to, and she will need regular blood tests to see how she's doing. It's not like other medication that you might take for an ailment and hope to see an improvement quite soon, hypothyroidism is a failure of the body to make enough thyroid hormone. That now needs addressed, along with (hopefully) an improvement in the damage the failing thyroid has caused. She needs to be patient, eat good food and not overtire herself and hopefully she'll feel better in due course.
Lulu thank you for the message. My girlfriend is very active on the health front (i'm now eating healthier than ever) but she was told that perhaps the brand of levothyroxine 'Almus'. She was also told about some key vitamins to be taking. I will make sure she rests and will update when the drugs start working!
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