Have read on here to ask for a print out of my test results so will do that next time I see GP. I am fully on NHS no private healthcare. Went down from 13.5 TSH to 7 on 50mg Levo after first six weeks. Now on 75mg. Just started third week of it. Still feeling really rubbish even though “I’m really close”. If I still feel like this and GP says TSH looks good I’ll ask for other tests to be done.
In meantime I’m trying to think of other things I can do to feel better. I don’t do dairy (most of the time) as it gives me psoriasis. Thinking about trying to cut out gluten too after reading posts on here saying it helped. Although I don’t seem to have any allergic reactions to it and GP said the tests they did r.e vitamin deficiency's all looked good, and I actually have high levels of Vit D, so unlikely to have leaky gut syndrome right?
What I noticed is that before I went on holiday I was having a period of feeling good (anyone else get that? Like a couple weeks of feeling normal and a couple weeks of stuck in bed?) and then I went on a 5 mile walk (nothing to me before all this) and had a few drinks on holiday. Was on holiday two weeks and had a few drinks each day. Then Monday of second week of holiday I am flat out. Soo tired, I’m 28 but feel 88 walking around a shop clinging onto things to stop me falling down with fatigue.
Do you think alcohol and/or exercise make it worse?
I decided to try not drinking any alcohol for a day and felt much better the next day, and better again the next. But at this point I had also been resting for 5 days....
Is it like I have loads of energy really... but my body doesn’t think I do because of my thyroid sending out the wrong signals, so then if I do any exercise it thinks I’m totally depleted, even though really I’m fine, and tells my body to rest by sending out signals of fatigue and aching bones and sensitivity...
So should I avoid any exercise until my bloods come back saying my TSH levels are in range?
Should I cut out alcohol?
Should I cut out gluten?
Any insights from anyone would be greatly appreciated <3
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Flowerpot108
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I'd try and get more blood tests done, if you can. TSH of 7 means you are still really hypo - you are aiming for this to be less than 2 and probably less than 1.
But just testing TSH isn't enough - you want to see what your actual thyroid hormones are doing. That means testing free T4 and free T3, And you want to see how your thyroid antibodies register - it's if these are high that going gluten-free can help. And ideally, also your key nutrients - ferritin folate, vit D and B12.
The NHS won't often test all that you need - although I have had success by saying these are the tests recommended by Thyroid UK - or there are private options available.
Then post the results (and lab ranges in brackets afterwards as these vary from lab to lab) and the lovely people here will help you understand them.
Phew! That means there’s still a chance I will feel better once the Levo takes me to where I need to be 😄. The GP saying I was only slightly out when I was feeling so bad was a bit worrying! I’ll find out what tests they’ve done already and get a print out. Then I will pop them on here and see what else I should get done if need be, and get some more advice from the lovely clever people on here. Thank you!
I've had an under-active thyroid for nearly 20 years. I'm now on the right level of medication for me - and feel completely fine. It is possible. But I wish I'd found this forum years and years ago. Doctors get very little training in thyroid issues, and of course appointments are very brief, so for a lot of us, treatment is sub-optimal.
This forum is a godsend.
The easiest way to feel well is to take back control: get the blood tests you need, and ask people here for help in understanding them. Read other people's questions and answers and see what is relevant to you. And read through helvella 's excellent glossary [pinned on the right] to get to grips with the terminology x
Bloods should be retested 6-8 weeks after each dose increase
75mcg is only one step up from starter dose. Likely to need at least 100mcg
Which brand of levothyroxine are you currently taking
Do you always get same brand of levothyroxine
Have you had vitamin D, folate, ferritin and B12 tested yet?
Also essential to test thyroid antibodies if not been tested yet
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
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
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
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
Now on 75mg. Just started third week of it. Still feeling really rubbish even though “I’m really close”.
No, you aren't "really close". Is that what your doctor told you? With a TSH of 7 you are still very hypothyroid.
You really need to know what TSH levels healthy people with healthy thyroids have, and you can read about that here. You can see that having a TSH of 7 doesn't even make it on to the graph :
Thyroid hormones give our body energy and T3 in particular is needed in every single T3 receptor cells. The following extract is from the link below:-
"Landmark scientific reviews by Bianco and his colleagues, supported by many others’ scientific studies, argue strongly that we must never dismiss or underestimate the body’s dependency on Free T3 in blood.
It is never an excuse for neglecting Free T3 testing to say “blood levels of FT3 do not correspond to local tissue levels of T3.” Bianco acknowledges this fact, and nevertheless, he asserts that Free T3 is profoundly significant. It is because bloodstream FT3 largely arises from, and therefore represents, net tissue-level T4-T3 conversion rates across the body.
The health implications of Free T3 reductions within the reference range are immense, especially for certain organs that depend almost 100% on Free T3, such as the heart, as you shall learn in Part2 of this series.
Levothyroxine doesn’t top up your thyroid it replaces it, so it’s important to be on high enough dose
As an example....if, when perfectly healthy, your own thyroid made the equivalent of 125mcg levothyroxine....and this metabolism is controlled by pituitary sending messages - TSH (Thyroid stimulating hormone)
Then as your thyroid starts to fail (usually due to autoimmune thyroid disease) ....you might get diagnosed when your thyroid has reduced output to roughly equivalent of 75mcg levothyroxine
Pituitary has noticed there’s a drop in thyroid hormones in the blood....(that’s Ft4 and, most importantly, the active hormone Ft3) ....so to try to make more thyroid hormone ...pituitary sends out stronger message to thyroid - TSH rises up
When GP starts you on 50mcg ....initially you feel a bit better ....as you have 75mcg from your own thyroid and 50mcg levothyroxine
But (here’s the bit most GP’s don’t understand)....levothyroxine doesn’t “top up” your own thyroid output.....well it does very briefly....but the pituitary very soon “sees” the levothyroxine in the blood....and TSH starts to drop
So at the end of week 6 ....TSH has dropped a lot. Your thyroid takes a rest ....has a holiday
So at this point you are now only mainly using the 50mcg levothyroxine....which is actually a dose reduction down from managing on 75mcg from your own thyroid before you started on levothyroxine
So you start to feel worse .....and are ready for next 25mcg dose increase in levothyroxine
Modern thinking ....and New NICE guidelines suggests it might actually be better to start on higher dose .....but many medics just don’t read guidelines ....and many patients can’t tolerate starting on more than 50mcg and need to increase slowly.
Starting on 50mcg and stepping dose up in 25mcg steps, retesting 6-8 weeks after each increase. But we still very often need to increase up to full replacement dose ...
Is it like I have loads of energy really... but my body doesn’t think I do because of my thyroid sending out the wrong signals, so then if I do any exercise it thinks I’m totally depleted, even though really I’m fine, and tells my body to rest by sending out signals of fatigue and aching bones and sensitivity...
No, it isn't anything like that. You don't have loads of energy because you have low T3. And, with low T3, if you over-exercise you will be totally depeleted. No 'think' about it.
I know you haven't had your FT4 tested, but with a TSH that high, it's pretty likely to be very low. So, until it picks up a bit - quite a bit, actually - just gentle walking or swimming to stop you going rusty. Nothing more adventurous than that. A gentle stroll.
The thyroid doesn't send any signals to anywhere. It's job is to produce thyroid hormone. And yours can't do much of that anymore.
Should I cut out alcohol?
Depends how you feel when you drink it. A lot of people find they need to drink a lot less. Others aren't bothered by it.
Should I cut out gluten?
Do you have Hashi's? It's usually Hashi's people that benefit from cutting out gluten, because they tend to be gluten-sensitive. Or even have Coeliac Disease.
Do not wait till you see GP next time for copy of results, ring and ask for a copy to be left for you to pick up. I only have to ring up and can pick it up shortly afterwards. As long as the GP has seen the results, you should be able to get a copy. Best of luck.
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Alcohol intolerance
any advice about going GF with hashis?
New diagnosis
overmedicated
GP wants to do repeat coeliac screen
