In January I was sent for blood tests by a gynaecologist and he happened to check my thyroid as he was doing a full check. I was told by the GP that the results showed i had a ’massively’ underactive thyroid and she went through the symptoms with me- most of which I’d been suffering with but I’d put it down to feeling my age and having a 5 year old as well as working odd shifts so always exhausted.
I started on 50g Levothyroxine. A month later my bloods were redone and were still ‘not great’ but showing improvement do they kept things as they were.
In the meantime I’d done some research And found that a gluten free diet might be a good idea so I’ve not been gluten free for 6 weeks.
I’d like to understand more about the condition but I’m not sure where to start. eg. I had gained weight without changing my diet or exercise and I now i presume it’s as a result of my thyroid problems. Will it now be possible for me to lose weight? Will it happen naturally when my levels return to normal? Will my fertility be impacted? Can I do anything to improve fertility?
I’m due another blood test in May. Can I ask the gp for a full break down so I can understand the results better? Do I need a private test to get a full break down?
Everyone in here seems so knowledgeable- I guess I’m kind of hoping you all started like me with your head reeling a bit.
First, you really need full testing: the NHS will routinely test TSH, and this is something of a blunt instrument. It's useful initially but less so as you start taking levo. The NSH will also, usually, test free T4, the inactive thyroid hormone, but you also really need free T3 testing (the active thyroid hormone, needed in every cell in your body); thyroid antibodies; and key nutrients - ferritin, folate, vit D and B12, as these will make your medication most effective.
You are entitled to your results: just saying you are "in range" or "over-range" or "under-range" is not good enough. If you post your blood results, and ranges, forum members can help. The ranges are important as these vary form lab to lab.
You will find lots of useful info on the Thyroid UK site, and helvella 's excellent glossary [pinned, on the right]explains the key terms you need to understand.
Finally, it's a slow, slow journey. You will need to be patient. It will take a while to reach optimum medication, as this needs to be increased very gradually, and your bloods re-tested at 6 - 8 week intervals.
Once your meds - and key nutrients - are optimised, you will feel well, be able to lose weight, have more energy etc. Good luck x
Usually you lose some of the weight you put on but not all of it, this seems to be the experience of most patients. Your doctor seems a little cautious regarding increasing your dose. Ask for copies of your blood test results as they are useful to know.
Going gluten free will not affect your treatment or blood test results. Some patients say they do better when gluten free but it is not necessary for the large majority of patients, it's something to try once you have been fully medicated and if you fail to recover.
Private blood tests are useful but aren't essential, they become useful for patients who are fully medicated and fail to recover. You are likely to need a much higher dose of levothyroxine and it will take a few months before you start to feel normal.
Bloods should be retested 6-8 weeks after each dose increase
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Everyone in here seems so knowledgeable- I guess I’m kind of hoping you all started like me with your head reeling a bit.
Oh, goodness, yes! I didn't even know what a thyroid was when I was diagnosed. That was 20 years ago. I haven't stopped reading and learning since.
I may not have known anything about thyroid in the beginning, but it soon became abundantly clear that my endo didn't know much, either! So, I knew I had to learn to help myself. It is confusing in the beginning, and I've taken many wrong turns in my journey, and I know that even now, I still have a lot to learn. But, I now know enough to self-treat and make myself better because had I stayed with that endo, I'm pretty confident that I would be dead by now! Or a vegetable.
I’d like to understand more about the condition but I’m not sure where to start.
And once you've digested all that, there are numerous books on the subject, and people on here will be able to suggest their favourites. But, just reading the posts and replies on here is a pretty good education.
Your GP obviously doesn't know much about thyroid because she doesn't know that 50 mcg is just a starter dose, and is supposed to be increased by 25 mcg after six weeks. You levels will obviously have improved from taking the levo, but if you stay on the same small dose, they could start going backwards again. So, the most important tip anyone can give you is to always, always ask for a print-out of your results. It is your legal right to have one. People here will show you how to interpret them, and then you'll be in a better position to fight your corner with your GP. Keep your own records. And, on the back of each print-out note the dose you were taking at the time, any changes to dose and how you felt on that dose - symptoms, etc.
When you go for a retest, always make sure the blood draw is early morning - before 9 am - and fast over-night. Leave a gap of 24 hours between your last dose of levo and the blood draw. That way, you will get the most instructive levels of TSH and FT4. TSH is highest early morning, and drops throughout the day. It's possibly also drops after eating, and definitely after drinking coffee. So, just drink water that morning.
It's not too late to get copies of all the blood tests you've had so far. Just ring the receptionist and say you will pick up the print-outs at her convenience. Then you can post them on here - with the range - and learn to understand what they mean. With time, it will become second nature to you, and you'll be able to read them at a glance.
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