I have secondary hypothyroidism and have had total thyroidectomy two years ago. Have only been prescribed T4 currently on 125 T4.. My GP has written twice to the Endo and he has refused to see me on both occasions as my T4 and TSH are considered normal.
My blood test results
T4 21.24 pmol/L (12-22)
TSH 0.19mU/L (0.27-4.2)
T3 5.23 (3.1-6.8)
B12 - 776 ng/L 197-1999
Ferritin 69 ug/L 13-150
Electrolytes 139 mmol/L 133-146
Vitamin D 115 > 50
Potassium 4.7 mmol/L 3.50-5.3
Liver function
Serum bilirubin level 3 umol/L <21
Plasma 60iu/L 1-35
Serum albumin 37 g/l 34-48
Total protein 72 g/L 60-80
Serum alkaline phosphate 76 u/L 30-130
My symptoms are
Headaches not migraines
Anxiety
Pain in joints and right shoulder
Chest pains
Sometimes confusion of thoughts and slow thoughts
Swelling of eyelids
Fatigue
Lightheaded and dizziness
Any thoughts of why I’m still feeling unwell? Is the problem with my liver? Or is it being on T4 only?
Thanks
Written by
Bettle7
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Some don't feel an improvement on levothyroxine - no matter what the endocrinologists may imagine. It is not one size that fits all with regard to thyroid hormones.
It is o.k. for people to sit behind a desk and look at a blood test who has never seen the patient and pronounce you're well because your blood tests are 'in range'.
If you've been on the same levothyroxine, I'd ask pharmacist to provide from another manufacturer as sometimes it's the fillers/binders within which affect us.
However, the fact that your results look o.k. they have not looked beyond to your clinical symptoms which doctors used to do long before blood tests were introduced. Levothyroxine which is T4 alone has to convert to T3 and you are converting well but if you feel awful you have to look at the fillers/binders in it which might be the cause.
As you have no thyroid gland at all, it would be kind if you could have some T3 (liothyronine) prescribed for you to be added to a reduced T4 as several research departments have found that a combination of T3/T4 has improved patient's wellbeing.
They have no clue about the struggle when no thyroid hormones are produced by our bodies. So, like the thousands on this forum who are forced to source their own in order to recover their health and it is a slow procedure but it is possible. If the 'professionals' aren't interested in relieving clinical symptoms we have no option.
If you wish - you can see a private endocrinologist and if you email Dionne at Thyroiduk she has a list. Email below.
tukadmin@thyroiduk.org
Some hints:-
Always get the very earliest appointment, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards.
Take thyroid hormones, usually when we get up with one full glass of water and wait an hour before eating. Food can interfere with the uptake.
Other members will respond re your other blood tests.
Its awful when you don't feel well and doctors don't understand.
Thanks so much for your response. I have tried Teva, Mercury Pharma and Wockhardt and I have problems with all so currently on Almus but I can just tolerate that.
I have also had dosage adjustments from 75, 100 and now 125 in 50 x 2 dosages of Almus and 25 Mercury Pharma. As I was told there are less dyes in 50 dosages.
I will try doing a private message regarding T3. My GP tried to prescribe it themselves but couldn’t as it said an alert that only Endos can prescribe.
It’s so frustrating as it’s hard trying to deal with the symptoms without knowing how to help yourself fir the best.
I think you've tried the majority. I have also read that if you take one anti-histamine tablet one hour before thyroid hormones and if it relieves your symptoms you have to change to another. If your GP can give you a private prescription, you may be able to purchase T3 yourself but in the UK I believe it is beyond the cost of many. I don't know the cost.
Just as a point of reference a fully functioning, working thyroid would be supporting you daily with approximately 100 T4 + 10 T3.
I think it is only fair and sensible that if there has been a medical intervention and the thyroid surgically removed or ablated with RAI that both these vital hormones are on the prescription.
Some people can get by on T4 alone, some people at some point in time simply stop converting the T4 to T3 and some people simply need both these essential hormones dosed and monitored independently to bring them into balance and to a level of well being acceptable to the patient.
I did get to see an endocrinologist but was denied a trial of T3, due to having a suppressed TSH. I was too stressed and unwell to continue fighting with the NHS.
I am now self medicating with NDT and feeling a lot better.
The thyroid is a major gland responsible for whole body synchronisation, regulating your physical, mental, emotional, psychological and spiritual well being.
If you haven't read it yet Dr Barry Durrant Peatfields book - Your Thyroid and How to Keep it Healthy. This doctor is hypothyroid and has the insight that makes this book an excellent goto for all things thyroid.
We may now not have our thyroids but we do need to know what we have lost
Thanks so much Pennyannie, I will get this from Amazon as it has lots of great reviews.. how long have you been skef medicating and how long did it take you to feel well?
I'm with Graves Disease and been living with the consequences of thyroid ablation with Radioactive iodine. It's all on my first post should you be interested.
I have been on monotherapy with Levothyroxine since 2005 and became very unwell about 5 years ago.
I started self medication last year after Nhs refusal for a trial of T3 and no help or acknowledgment with the additional symptoms I was suffering from RAI.
I tried T3, it worked, but wasn't able to sustain the source of my supply.
I tried a different brand but this didn't suit me.
I then tried Natural Desiccated Thyroid last November, which I actually prefer to T3 and am doing ok.
I'm still a work in progress, as we all are, but am going in the right direction
It's a massive learning curve, but am so grateful for the help and knowledge I've found on this amazing site.
It is a learning curve so I’m so surprised that most of us have been left to figure things out for ourselves considering it’s so complex and affect us emotionally and physically.
I’m happy you are feeling better but it seems that the road was long before this happened.
Thanks for all your help. It’s been two years for me and I find it so hard when doing a full time job and still trying to cope. This site is so amazing I agree with that.
If he is willing to give you a Private Prescription it means paying it yourself. If you put up a fresh post if you get a prescription asking members the best source and you will be sent a private message and your post will be closed so that answers aren't put on the forum.
Doctors don't seem to be aware of how helpful T3 can be but if you're in the UK, doctors have been banned from prescribing and only an Endocrinologist can (if he thinks you need it!).
I've never had side effects with T3 - others may have. In fact it calmed everything in by body and I immediately felt so much better and slowly improved . I took to it like a duck to water as oxygen seemed to flood into me and that my skin could breathe (sounds strange but cannot explain it better). Of course, not everyone has the same affect.
T4 is levothyroxine. Levothyroxine is an inactive hormone and its job is to convert to T3 (liothyronine). T3 is the Active thyroid hormone and we have millions of T3 receptor cells in our body from head to toe and T3 is required in all of them. Many do convert levothyroxine into liothyronine but some of us do not effectively.
Research has also shown that T4/T3 suits quite a number but if in the UK, they will no longer prescribe the 'active thyroid hormone' due to the suppliers' exorbitant cost - which has gone up by 6,000%. Many members try to source their own. There is also a product called NDT (natural dessicated thyroid hormones) which is the original replacement before levothyroxine was introduced as 'perfect replacement'. I don't understand why as NDT T3, T2, T1,and calcitonin and is made from pigs' thyroid glands. I think (and am not medically qualified) it is because it is from animals that our bodies adapt to it better.
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Help with results please
Blood test results. Help please.
HELP WITH BLOOD TEST RESULTS
Blood Test Results
Help with results please. always tired and feel like s**t feel depressed and getting worst
