Morning all, so I have finally been granted access to my medical records and can now share my results with you all, I’ll post my results from the 11th Jan however if my earlier results help I can obviously share these to, I was increased to 100 mcg levo afterwards and I’m due another test in 4 weeks. I’m extremely grateful to anyone who shares any advice on here.
You have no idea just how much your advice and support has already helped me.
Pathology Investigations
Thyroid function test
Serum TSH level 13.1 mu/L [0.35 - 5.5]
Above high reference limit
Serum free T4 level 12 pmol/L [9.0 - 23.0]
Comment: TSH>10 usually indicates primary hypothyroidism
Written by
Adam40
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So, I guess the 11 Jan result is you on 75 mcg levo? If so, no wonder you felt rough. With low fT4, your body won’t be able to make very much fT3, which is the hormone which makes you feel well. It also shows that you were severely under medicated. Most people need TSH under 1 once they are on levo, and fT4 towards the top end of the range, in order to feel vaguely normal. If it was you before medication, then it shows you desperately needed medicating! I would imagine that 100 mcg is not your optimal dose either, unless you weigh about 9st, so you will likely be needing another increase soon.
If you are able to persuade the GP to test for thyroid antibodies and vitamins, you will know whether you have the autoimmune version and whether there are vitamin issues you can address, which will improve your sense of well-being. Hashis causes low stomach acid, which in turn causes poor vitamin uptake from food... When vitamin levels are optimal, the body is better able to convert fT4 into fT3. Having fT3 at a decent level is, well, everything. If you are not able to persuade the GP, then I think it is worth paying for a postal thyroid test privately, which will check antibodies and vitamins. I resisted for years and regret it! There’s probably no point testing fT3 at this point. With an fT4 as low as yours, you very likely are under range on fT3 and this will be causing many of the symptoms you describe in your first post... Getting to the right level of levo should eventually fix this. If you get fT4 towards the top of the range and TSH under 1 and vitamin levels are good, but you still feel rough, that’s the time to test fT3.
Posting your previous results would help to see how you have progressed.
Put them in dated order & list what dose you were taking.
Your TSH is high needs to be nearer 1 & FT4 too low needs to be top third of range.
Your GP might view getting into TSH anywhere into range will be satisfactory but your aim will be to have you FT3 & FT4 top 3rd of range.
Is TSH and FT4 all that was tested? Ask GP to test key nutrients. If they refuse you may have to look at private testing. FT3 result very important to see how you are converting FT4 to FT3.
You will need further increases, are you retested after 6 weeks?
Presumably this was a test after being on Levo for a few weeks?
Your TSH was still high and your GP was correct to increase your Levo.
Your next test will hopefully show a lower TSH and higher FT4 but I expect that you will still need further increases in dose.
The aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well.
You need to ensure that you get regular tests - every 6-8 weeks - with an increase of 25mcg each time, until your levels are where you need them to be for your symptoms to abate and where you feel well.
It's important to have optimal nutrient levels for thyroid hormone to work properly, so you need to test Vit D, B12, Folate and Ferritin. Post those results, including reference ranges and units of measurment for Vit D and B12, when you have them for members to comment.
Comment: TSH>10 usually indicates primary hypothyroidism
Gone from 50 to 75 now 100mcg of Accord branded Levothyroxine, if anything I’d say I actually feel worse and with more symptoms, all of this started when I fell ill with what I’d put money on being Covid-19 despite 2 negative tests although I couldn’t actually move to get a test done for around 10 days. I’ve always been a fit healthy active person and with a positive outlook on any hurdles that life has shot in my way however this situation is really pushing me mentally and physically. It’s having a impact on my work ( self employed builder ) on my relationship with my partner mainly due to her lack of understanding and support also my extremely low libido and I mean off the charts low. I’m definitely going to do a external test now I’ve been able to share my results and can get clear guidance on my next steps ...
I’m 6.1 and around 16st 5 always carried it well until the last 10 months or so since stopping weight training and exercising so my nipples are getting closer to my armpits everyday unfortunately 😖 just started doing some light exercise, back doing light bag work,weights & rowing but it’s such hard work and literally wipes me out but I need to continue with it I’ll just listen to my body and make sure I don’t over do it.
I will definitely post my results and I’ll order one today, then hopefully get some advice on supplements. Or should speak with my GP tomorrow morning and see if they are willing to do more tests ?
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Vitamin D insufficiency was associated with AITD and HT, especially overt hypothyroidism. Low serum vitamin D levels were independently associated with high serum TSH levels.
The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
Lots of us will feel worse on starting treatment, more or less consistently until we get to our optimal dose of levo. I am not 100% confident in what I am about to write in terms of why that is, but I shall attempt it and welcome correction from other forum users on any gaffes I'm about to commit. I’ve still got a lot to learn.
Here goes. I think we feel worse because before we are diagnosed, our thyroids are probably managing to produce a bit of fT3 on their own. When we start taking levo, the thyroid stops working so hard, because the medication is doing some of its job for it, so we likely have less fT3 until we hit the magical dose. So, it is a long and slow journey to get that fT4 at a decent level so that the body can convert it to fT3 and there is often a sense of feeling worse whilst we go through the test, dose increase, test, dose increase loop, until we get to the right place.
There is no doubt in my mind (and I’m just another patient, so what I know is more or less limited to my own experience and what I’ve read here) that you will still be feeling rubbish at the moment... I don’t know if this helps with the partner at all? The fact that random strangers on the internet can look at your blood test results and say “gosh, yes, he definitely feels terrible right now”? Maybe the partner is concerned that we are a collective of hypochondriacs?! I certainly refused to countenance the idea that people on a chat board knew more about my condition than GPs and endocrinologists, initially, because it does sound a bit bonkers when you put it like that... however, it was true for me and I wish I’d been keener to listen sooner in my journey. Luckily you seem to be finding information and working on it, so I think you will get to a state of optimal thyroid health sooner than I did (actually, I’m still not there - another story!) It will likely be months, not weeks, though.
I didn’t begin to feel better until I hit my optimal levothyroxine dose, which was 100 mcg in my 9st case. I still wasn’t entirely better, though. I am a shoddy converter of fT4 into fT3. I am not sure of the exact number of poor converters (and probably nobody is, whilst the NHS isn’t actively diagnosing them) but I have seen anything from 10-20% quoted, so the odds are in your favour that you are likely to be fine on the levo once you get to your correct dosage. And if not, you’re in the right place!
Thank you, it really does help put me in more positive state of mind and hopeful of getting on the right path quicker, I’ve been a little obsessed with thinking I want to old me back but I actually don’t .... I want the new me !!
I think some people close to us struggle to understand because it’s not something you can see or not something that has clear symptoms for everyone, I feel like if I’m selfish and just think about me improving then everything else will improve to. I’m just evaluating the external tests and will purchase one today, I’m definitely wanting to see regarding vitamins as maybe something will flag up and I can take a supplement to also help improve a better balance.
That sounds good and realistic, particularly the part about “new me” not “old me”. I’m going to take that and learn from it!
Maybe people around us struggle because we go down so slowly so the people who see us every day are the last ones to notice that we are becoming unwell. You didn’t get a TSH of 50 over night, I suppose, and I was symptomatic for 2.5 years before I got diagnosed at TSH 28. Plus I think it’s not exactly uniform. I imagine you have the odd slightly better day even now? I think I did back then - somehow we can make a massive effort when we really really need to...and maybe that leaves the people around us wondering why we can’t do that all the time. Of course we can’t!
I definitely have the good days and bad days, I can completely relate to your points, I mostly feel like I can raise my game and I push myself to ensure I’m still providing and making a success of my business but that unfortunately that means I can literally be wiped out once I’m home. It’s like my brain and my body are so different these days its extremely frustrating.
That's a good description, of being able to make a massive effort when we really have to, but it being impossible to do it all the time, and yes, people do think , "well if you can do it for so and so , why can't you do it for me ?"I found my private life , and social life was the thing that suffered for a few years, while i managed to keep 'work life' and taxing the van, and feeding the children going for a lot longer.
I was single , so it was a lot easier to let the other stuff go, but if i'd still had a partner i'm sure that would have brought problems.
As it was, i felt really bad for letting friends down and leaving them thinking that i didn't like them enough to go to their birthday party in a field at the weekend....i'd have loved too , but i'd also have been unable to work till Wednesday, so not an option .
It's so hard for people to 'get it' , when they can't 'see' it, and their 'tired' bodies feel better again after a good sleep and ours often don't.
low libido with TSH still at 13 ... i'm not surprised ...... body's are smart at prioritising, at TSH 13 and with fT4 still so low in range, yours is still prioritising stuff like temperature, digesting food , walking , talking .... breathing , and other such boring stuff . I had bugger all libido left with TSH getting up to just 6.8 when i was only 3o yrs old and in pretty good shape physically... you had TSH get up to 50 before being treated .
Fear not , it did come back. All in it's own good time ... which is always 'too long' with thyroid things .
Welcome to the disease that will force you to learn patience ,and the wisdom in 'The Hare and the Tortoise', whether you wanted to or not.
It will also make you do an O Level in Endocrinology , which probably wasn't on your 'to do' list either .
Well I think the lockdown we all find ourselves in puts our symptoms and issues under the microscope even more, I’m glad I found this place and everyone here
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