I have a visit with the endocrinologist on Thursday so would like advice on what I should ask for. Diagnosed hypothyroidism in February and prescribed levothyroxine (accord brand) which left me with chronic joint pain. I had loads of other tests which came back normal and doctors refused to believe it was the medication that caused the pain. I’m July I stopped taking the levothyroxine and after a couple of weeks the joint pain disappeared completely. In September I had another thyroid test and was told my levels were dangerously low. They forced me back on the levothyroxine. This time I tried mercurypharma. After about a week the joint pain came back even worse. Taking levothyroxine hasn’t removed any of the symptoms I went to the doctors with in the first place so what would be my next option. I don’t have any of my results. I just rely on what my doctors say
more advice : I have a visit with the... - Thyroid UK
more advice
Hello ScriptMaz :
Well I'm afraid you can't just rely on what the doctor says - especially when your symptoms are not relieved -
So first off - ask the receptionist if s/he would kindly print off your thyroid blood test results and ranges for you, including the readings at diagnosis and we can explain what these mean for you.
Unless of course you already have online access and can find this information and happy to share same with forum members.
You may have to type some of the results and range in as I believe you can only do 1 screen shot per post.
No thyroid hormone works well until your core strength vitamins and minerals are up and maintained at optimal levels - so it would be good to idea to tryand get current values on your ferritin, folate, B12 and vitamin D.
What were you actually diagnosed with ?
I have Hashimoto’s disease. Diagnosed about 10 years ago but didn’t require treatment as my thyroid was borderline. In February I started taking levothyroxine, been on 100mg, then 125mg and now 75mg. No symptoms relieved at any dose but severe joint pain appeared too. I went from exercising twice a day before to struggling to walk and stand up. I’m looking for alternatives to levothyroxine as it leaves me in agony on whatever dose I’ve tried
I 've just been reading your first post and see you were supplementing vitamins and minerals - have these been rerun to see how effective your core strength has been built back.
Exercising when undermedicated can be a step too far as the body is using up your thyroid hormones faster than if, say, you went for a walk -
It is low T3 that causes all the symptoms and if there are not enough thyroid hormones circulating the body will dicate where they should be used first, and the lions share will go to your heart and brain.
There are treatment options -
Synthetetic T3 - Liothyronine -
and Natural Desiccated Thyroid which is derived from pig thyroids dried and ground down into tablets refered to as grains and contains all the same known hormones as that of the human gland namely trace elements of T1. T2 and calcitonin + a measure of T3 and a measure of T4 in each grain.
These two treatment options are only available through an endocrinologist so maybe this is why you have been referred ?
Possible the first course of action is to try liquid T4 - and ensure your vitamins and minerals are all optimal to help support your through this ill health.
All things Hashimoto's - thyroidpharmacist.com
Thank you. This is exactly what I’m looking for. I will take this advice to the endocrinologist. Hopefully they will be able to sort out my issue and I can get back to walking without feeling pain
This is what happened to me after starting Synthroid after thyroidectomy … Joint pains were out of this world eventually I was diagnosed with Psoriatic Arthritis…. Thyroid disease the gift that gives gifts…. Hope you find answer.
I am strongly suspecting that you have low vitamin levels causing symptoms that are only revealed once your thyroid hormone levels begin to be restored.
The other possibility is that you have an underlying intolerance to gluten and or dairy.
You said that your previous tests for ferritin, folate, B12 & D3 were all 'normal'. This is not good enough for us and we need them all to be OPTIMAL so that our thyroid hormone can work well.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
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.
I’ve had all the tests. They have retested all my vitamin levels, B12 and folate a number of times and said there are no issues. The joint pain only appears when I take the levothyroxine. The only symptom I had before was unexplained weight gain and tiredness which gets worse when taking levothyroxine. I need to know if there are alternatives to the levothyroxine as it makes me feel worse
Can you post the actual results with reference ranges (numbers in brackets after your result) of these tests that they have said there are no issues with?
A doctor will tell you all is well with any number within the range but we need them to be in the upper part of the range usually. A number several points from the bottom of the range will make you ill. Doctors have no notion of this and do not understand.
I have never been given the actual results. My doctor doesn’t give me them. They just tell me over the phone. I’m really looking for alternatives to levothyroxine as that’s what’s causing my issue. Every time I take one of the tablets I feel like I’m being poisoned
One of the things that you need to do as a thyroid patient is to get hard copies of all of your blood results.
We cannot rely on doctors telling us everything is OK. The likelyhood is that you need to supplement to raise your levels of vitamins further.
Can you contact your GP reception and ask them to print your vitamin levels off. You can then collect them and start a new post and post the results for members to comment.
I do hear what you are saying, and what you are experiencing is something that can happen to some people. What this group has found that having lower than optimal levels of certain vitamins has made them intolerant to thyroid hormone.
The way to help and fix this intolerance is to improve key vitamin levels.
You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
Please add actual vitamin results
It’s highly unlikely with Hashimoto’s that vitamin levels are high enough
For any replacement thyroid hormones to work we need GOOD vitamin levels
Vitamin D a at least over 80nmol minimum and over 100nmol often better
Serum B12 at least over 500
Active B12 at least over 70
Folate at top of range
Ferritin at least half way through range
For good conversion of levothyroxine (Ft4) to active hormone (Ft3) we need good vitamin levels
Low vitamin levels are CAUSED by being hypothyroid as it results in low stomach acid and poor nutrient absorption as direct result
Starting and stopping levothyroxine likely to make vitamin levels worse
How long have you been on 75mcg
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
What were results after 6-8 weeks on 125mcg and which brand were they
You may have needed further dose increase after 6-8 weeks on 125mcg
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
You need to take copies of all test results with you to consultation
ideally multiple results on spreadsheet with what dose at time of test etc
If not had coeliac blood test, get tested BEFORE trial on strictly gluten free diet
Rarely will NHS do full testing
You need TSH, Ft4 and Ft3 tested together after 2 months on constant unchanging dose and brand
If vitamins are at GOOD levels……and Ft3 remains low then you might need T3 prescribed alongside levothyroxine
But it’s essential to get on high enough dose levothyroxine before adding T3
I don’t have any test results. They don’t give me them. My issue is that levothyroxine causes me severe joint pain. I stopped taking it and the pain disappeared. I have tried different brands and same result. I am left in agony. The reason I posted this is to get alternatives to levothyroxine
Please understand that we are only trying to help you based on our vaste collective experience and reading.
Things we know:
- the fact that the pain goes away when you stop taking levo does not prove that it is the levo causing the pain. Levo is a thyroid hormone, T4, not a drug. Hormones do no usually cause symptoms. The fillers in the tablets may cause symptoms so it's always a good idea to try different brands so that you can find one that suits you. But, it often happens that when you start levo - or any other form of thyroid hormone replacement - new symptoms appear or old ones get worse. And, also usually happens that if you stop your levo, etc. for some reason, all symptoms disappear. No-one knows why but it happens. However, the respite is only temporary, and symptoms soon come creeping back.
- if your nutrients - vit D, B2, folate and ferritin - are not optimal, not only will this cause symptoms (especially vit D and joint pain) but it will also mean that your body cannot correctly use the hormone you are giving it.
- 125 mcg levo is not a high dose. Many people need more than that. So it could be that you've never taken enough.
- doctors know nothing about nutrients, as someone said above, they do not understand the importance of them. And they will never give you your results and ranges - just thier opinion of those results, which is very often wrong - and they probably prefer that you don't know them. That way, you can't argue. What you need to do - and this is of vital importance - is ask at reception for a print-out of your results. You need to know exactly what was tested and what the results were - we can help you interpret them - and keep your own records, on which you note doses, symptoms, and anything else of importance. It is your legal right to have these print-outs, so they can't refuse.
- the reason that you don't get on with levo is possibly because you don't convert T4 to T3 very well. Levo is T4, which is basically a storage hormone that doesn't do much until it is converted into the active hormone, T3. Not all hypos are very good at that, so need some T3 added to their levo. But, you cannot know how well you convert until you get both FT4 and FT3 tested at the same time. This usually means doing private tests in the UK, because the labs will very often not test T3 even when the doctor requests it.
- if it turns out that you do need T3 - either with levo, or on its own if you really cannot tolerate T4 (but that's rare) - your doctor cannot initiate the prescription. It has to be an NHS endo. But, not all endos are open to T3 because they do not know what it is or what it does and are scared of it. It can be difficult to find one that will prescribe it.
- and then there is NDT, as mentioned above, but that is even more difficult to get prescribed and most people that take it have to buy their own - which is getting more and more difficult. NDT, as stated above, is made from pig thyroid and therefore contains both T4 and T3 (doubtful it actually does contain any T2, T1 or calcitonin) but if you can't tolerate T4, that is probably not the best solution. NDT doesn't suit everyone.
- some people need large quantities of T3 to be well, so do better on T3 only. Or, if NDT does suite them, synthetic T3 added to their NDT. There are many variations of doses but, unfortunately, doctors do not often give us the freedom to explore all these possibilities.
- but, whatever route you chose to follow, to begin with, you won't get anywhere unless your nutrients are optimal. So, that is the place to start. 
Thanks for your advice. I’m just so frustrated by it all. I’ve always lead an active life and been very fit so to go from that to struggling to walk an d move without being in pain is killing me. I have never had any problems with my joints and the only change in my life was taking levothyroxine then you can understand why I attribute this pain to the drug. My only symptom before was weight gain and tiredness which have both got worse since starting the meds. Taking levothyroxine has made my life unbearable to the point I am now hating life. I’m hoping seeing the endocrinologist will give me some more options
No, the only change in your life is becoming hypo. That's what has caused all the problems. People do tend to blame levo for everything. But levo is just a hormone. If it were a drug then it might be the guilty party but hormones are natural things that our lives depend on. And the time between levels dropping, due to becoming hypo, for whatever reason, and gettin diagnosed/prescribed levo can cause all sorts of problems.
Becoming hypo happens slowly, not over-night. And, as thyroid hormone levels drop, the adrenals take up the slack so it can be quite a while until we notice that something is not quite right. At first, we tend to blame it on getting older, or over-working, or becoming a mum, or going into menopause. So, by the time we finally consult a doctor about it all, quite some time has gone by. Then the doctor tries to blame it all on getting old, etc. And by the time you finally get diagnosed, your body has adapted to the lower levels of thyroid hormone, to some extent. Then, you start levo and the body has to readapt. So, not really surprising if there are problems to begin with. We just have to push through until it gets better.
And we all understand that and are trying to help.
Yes many many people find symptoms get worse initially on Levo ….and many people stop levothyroxine several times before realising they need to stick on it and at high enough dose
Levothyroxine is not a medication, it’s replacement thyroid hormone
Levothyroxine is Ft4 and is storage hormone. It is converted in every single cell into Ft3 (active hormone)
It can take a few months to get dose levothyroxine fine tuned, all four vitamins at OPTIMAL levels and approximately 80% of Hashimoto’s patients find gluten free helps or is essential …..and around 50% find dairy free beneficial
Is consultation on NHS or private
NHS will only prescribe levothyroxine…..and with difficulty, if Ft3 remains low, despite good levels of Ft4, and optimal vitamin levels ……then in rare cases they will prescribe small doses T3 alongside levothyroxine. But it’s important to get levothyroxine dose correct first
private consultation
You might be offered NDT (pig thyroid). It’s extremely expensive and definitely doesn’t suit everyone. It’s also difficult to get started on NDT if not first on levothyroxine
For consultation
1) you need to get copies of all your thyroid and vitamin results and ranges at least back to 2018…..and ideally at least 5 years before that. Ring receptionist and request copies or get access to your results online
2) pain is frequently caused by
a) inadequate dose levothyroxine
b) low vitamin levels
c) wheat or gluten intolerance
I don’t have any test results. They don’t give me them.
They won’t give you results unless you request them
They are legally required to give you results when you request them
Suggest you reread your previous post
healthunlocked.com/thyroidu...
You are legally entitled to copies of all your blood test results and ranges
Most endocrinologists are diabetes experts and useless for thyroid
List of thyroid specialists and endocrinologists here
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