Hello all. Just wanted to say firstly how great it is to finally find somewhere where people can understand how you feel when you have hypothyroidism, and take the time to support you trying to take control of your own health.
I was finally diagnosed and started treatment for autoimmune hypothyroidism in 2011. I was originally on 100mcg of Levothyroxine until 2015 when it was cut to 75mcg after my TSH went down to 0.04. It’s steadily risen though over the last couple of years, and I’ve also been told my cholesterol is too high, as well as my blood pressure going up. I’m struggling to lose any weight (I’m 12 1/2 stone and 5 foot 2 inches), feel quite tired all the time, and have a lot of joint pain/muscle weakness, so decided to get a Blue Horizons test done. The results came back as follows:
I’ve got a GP appointment on 23/09 mainly to discuss the low B12 result, but I’d be grateful to know if there’s anything else I need to try and get sorted with them as well in light of my other results.
Many thanks for all your help/advice in advance, it is much appreciated.
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- Your TSH is too high for someone on thyroid hormone replacement (levo).
- Your FT4 is much to high - but the question is why? Is it just because you're taking too much levo or is it due to the Hashi's itself?
- Your FT3 is too low, and that is why your cholesterol is high and your blood pressure is high and you can't lose weight.
Do you know how Hashi's 'works'? And, more to the point, does your GP know?!? And does he know that with Hashi's he should not be dosing by the TSH because it is totally unreliable? And in any case, you're more than likely to be a poor converter and need some T3 added to your levo.
Is he going to test for Pernicious Anemia? As you have one autoimmune disease you could very well have PA which is also autoimmune.
Or the other hand your B12 could be low because your stomach acid is low making it difficult to digest food and absorb nutrients. Most hypos have low stomach acid but doctors refuse to believe it.
In any case, don't be fobbed off with a low, short-term dose of cyanocobalamin (B12). That won't help much. And you absolutely need your folate tested before you take anything.
And he needs to test your ferritin, and if that is equally low, he needs to do a full iron panel to find out why.
Hi greygoose, and many thanks for your welcome to the forum! It’s taken me a while to join, but I’m so glad I’ve taken the plunge!
Your input on my test results is really helpful, and I’ll definitely be making a note of them to take to my appointment on Monday.
In connection with my results, I was confused as to why my TSH and FT4 both seem quite high, but my FT3 is low. I see a lot on the forum about getting your TSH down to 1, which is where one of my previous GP’s had said I seem to function best, but that doesn’t seem like it would necessarily help at the moment if I’m not converting the FT4 to FT3 well?
With regards to how Hashi’s works, I’ve read lots about it but, as the GP I had when I was finally diagnosed in 2011 told me my thyroid had ‘packed up’, I thought it didn’t apply to me. I’m guessing that’s not right though and that’s not how Hashi’s works, and I need to get back to reading up about it very quickly! I can’t comment on whether my current GP knows how Hashi’s works as I haven’t seen the GP where I live now (I’ve moved 3 times in the last 13 years) about anything to do with my thyroid, so am willing to give them the benefit of the doubt on Monday, well, for one occasion anyway.
I will ask them to test for Pernicious Anemia, as I have seen before about the link about one autoimmune disease predisposing you for another. A lot of the symptoms I have at the moment do seem to be pointing towards this, so I will definitely be asking them to test for this further.
If it comes back that it isn’t this though, could you advise how I find out if I have low stomach acid? Either way, I won’t let them fob me off with a short term shot of B12 until I know for sure what’s causing it, and until I’ve had my folate and ferritin tested too. Unfortunately I found trying to get the blood out for the finger prick test quite hard, even after following all the advice in the leaflet that came with the test, and next time would pay extra to have a venous draw to stop these two results coming back as haemolysed.
I just also wanted to say that unfortunately I’ve been guilty of just going along with everything that the medical profession tells me up until now, as I don’t like making a fuss and am always worried about being wrong in what I’m saying but now, thanks to this forum, I’m feeling a lot more able to take some action to improve my health, rather than just thinking the way I’ve been feeling for years is as good as it’s going to get.
I was confused as to why my TSH and FT4 both seem quite high, but my FT3 is low.
Your TSH is high becaause your FT3 is low. T3 has a greater effect on TSH than T4.
Your FT4 is high because not much of it is being converted to T3. If you converted well your FT4 would be much lower on the same dose.
I see a lot on the forum about getting your TSH down to 1, which is where one of my previous GP’s had said I seem to function best, but that doesn’t seem like it would necessarily help at the moment if I’m not converting the FT4 to FT3 well?
Actually we say - well, I do, anyway - that it should come down to 1 or under. And if truth be told, most hypos need it under-range, because they need their Frees to be quite high. You can't have high Frees without low TSH. You do know that the TSH follows the thyroid hormone - the Frees - levels, don't you?
How would your GP know how well you function? It's usually the patient that tells the doctor that, not the other way around.
TSH doesn't help anything, whether you convert well of not. It doesn't cause symptoms. It doesn't make you feel anything at all. And you're not likely to get your TSH down below 1 when you're a poor converter, anyway.
TSH - Thyroid Stimulating Hormone - it's a pituitary hormone which the pituitary produces when it senses that there's not enough thyroid hormone in the blood. So, the lower the thyroid hormones, the higher the TSH. But just looking at the TSH won't tell you if you're a poor converter or if your FT3 is higher than your FT4 or anything like that. It just reacts to the total thyroid hormone level. Which is why you absolutely need the Frees tested, despite what doctors think!
as the GP I had when I was finally diagnosed in 2011 told me my thyroid had ‘packed up’, I thought it didn’t apply to me.
Well, if your thyroid was completely destroyed, it wouldn't apply to you, no. But how did your GP know your thyroid had packed up? If it wasn't producing any hormone at all, you probably would have dropped dead on your way to the surgery before you could even get a diagnosis. You can't live without thyroid hormone. I think he was probably being a bit premature there. I was told my thyroid was dead about 15 years ago, without a scan or any sort of proof. But, low and behold, five years later, for reasons I won't go into I stopped my thyroid hormone replacement for six months, and my good old thyroid swung back into action and produced what hormone it could. Which wasn't very much, but it kept me alive.
If it comes back that it isn’t this though, could you advise how I find out if I have low stomach acid?
unfortunately I’ve been guilty of just going along with everything that the medical profession tells me up until now, as I don’t like making a fuss and am always worried about being wrong in what I’m saying
Well, that's the way it should be. We should be able to trust that our doctors know what they're talking about. Unfortunately, seems to me, they very rarely do - and not just about thyroid, either! But there's no law that says you can't ask questions, check up on what they say, ask for proof, either. I'm not suggesting you tell them how to do their job - although I have been known to do that (blush blush) - but a dose of healthy scepticisum never did anyone any harm, and if something feels wrong it usually is. They know very little about thyroid - some of them will even admit that - and nothing about nutrition. And yet they will lecture and pontificate on these subjects endlessly - or else just clam up and refuse to answer questions. But you do have the right to ask those questions, and to refuse treatment if you're not satisfied with the answers.
Thanks for your reply with the highlighted points, greygoose, it’s all really helpful. I didn’t know that T3 had a greater effect on TSH than T4, but reading your explanation makes perfect sense. I can also understand now about not having high Frees without a low TSH, and that TSH doesn’t really do much apart from make the call for more thyroid hormone. It does make me wonder why they insist on only using TSH as the test result to dose you on, as I can see that there’s obviously so much more to it than that now.
That is true too about how would the GP know how well I function! I’ve never thought until you said it that actually that was a bit presumptuous on their part 😂!
As for the packed up bit, to be honest I did feel like I actually was on death’s door when they finally called me in to say ‘yes, you were right all along, there was something wrong with you’. I didn’t ask for my test results on that day as I was too emotional, but found out a few weeks later my TSH was over 85 when they got the results back. I’d had the blood test that finally diagnosed me in the afternoon too, so who knows what it would’ve been at 8:30 in the morning. They never told me what my FT4 results were, and I didn’t know enough about it all at the time to ask, but my antibodies were 142 then (143 now). It was only when I got the results from my Blue Horizons test the other week that I found out it’s the TgAb ones, not TpAb though. I’m not sure that makes any difference in the long term, but does now make sense as to why I had thyroid nodules, and why my thyroid gland still feels like it swells up a bit every now and then.
By the way, I’m glad your thyroid still had enough to keep you going after your 6 months off medication, and hope it didn’t cause you too many problems in the long term 🤞.
Thanks for the links about the burp test, although this isn’t normally something I have a problem doing!! I’ll bookmark them though for after I speak to the GP and have had the other tests and results in relation to my low B12, and do it then if I need to.
I’ve definitely taken on board your thoughts about not just accepting what the GP or other health professionals say going forward, and about being more in control of my own health when I do see the GP. I’ve made notes from the advice that yourself, tattybogle and SlowDragon have replied with, so feel much more prepared for tomorrow now.
I’ll keep you updated on what happens, but thank you again for all your help so far 🤗!
The difference between TPO and Tg antibodies? There's nothing official but I have noticed over the years I've been reading people's blood test results that those that have high Tg antibodies are more likely to have Ord's than Hashi's.
So, what's the difference between Ord's and Hashi's? They're both autoimmune and both act in the same way. But those with Hashi's have a goitre, whereas those with Ord's have a thyroid that gets smaller and smaller until it's like a shrivelled-up pea. But the results is the same: hypothyroidism.
Stopping the thyroid hormone replacement for six months didn't have any long-term effects that I've noticed. But the reason for stopping it did! You can read about that on my profile.
Hello SlowDragon, and thank you for welcoming me to the forum.
Just to confirm, I did my test at 8:20am, and followed all of the advice as outlined.
I’m currently taking 25mcg of Wockhardt and 50mcg of Teva, although I don’t always get the same make of 50mcg from the pharmacy I get my prescription from.
Yes, I was supplementing with a Vitamin D3 tablet up until about 3 weeks ago, and was taking 1000iu from Holland & Barrett. I’m not sure how long this remains in your system though, and whether it would be worth getting this re-tested at some stage?
I will definitely request politely that the GP test for Pernicious Anaemia, as I do feel that a lot of the symptoms I have at the moment are pointing towards this. I’ll also include a polite request for folate and ferritin too. I’ve never been tested for coeliac, but will mention this as well.
Thank you also for the information regarding high cholesterol being directly linked to low FT3. I never knew about this until I read about it on this forum, and it was one of the original reasons I finally did a private blood test, as I wanted to know if I was having problems converting FT4 to FT3, and if this was contributing to my high cholesterol. It looks like that it’s now flagging up another problem with my B12 levels though, so thank you for all the advice you’ve given to others, which has certainly been very helpful to me as well.
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
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
But for some people (usually if lactose intolerant), Teva is by far the best option
Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg and 50mcg tablets became available Sept 2024
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
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).
keep these up your sleeve , they may come in useful for discussion with doctors : healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range
"If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid".
probably better not to mention you've been on a thyroid 'forum', or GP may spend most of the apt. telling you not to believe everything you read on the internet...... (while sitting there looking up B12 symptoms on google themselves lol)
this may come in handy at some point too : healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-*-over-2.5-3-ish (although in your case it's the T3 that's too low for you , not the T4, but the principle still applies)
my TSH used to be lower when my ft3 was higher ..... recently me fT3 gradually fell and TSH has gradually gone up , despite fT4 remaining top end of range throughout. you can see how the results changed over time here : healthunlocked.com/thyroidu...
Thanks for your post, tattybogle, and for all the linked articles. I will keep them ‘up my sleeve’ for future reference, if required.
Even though the GP made a big deal about my high cholesterol at the time it was tested, and referred me to a health coach who gave me all the usual advice, it’s never been raised with me again. I have no intention of going on statins anyway, so it’s probably just as well!
As you say, I won’t mention about this forum to them, although it seems a shame when there’s so many people on here like yourself with knowledge that could assist them. I shall let the doctor consult doctor Google instead!
Really like the shoe size analogy, by the way-that’s an excellent way of putting that information across, so will keep that one in my arsenal too.
As for your last link, well, that rings more than a few bells with me. Unfortunately I’ve only got my TSH results to fall back on, as the full thyroid panel test I did the other week is the only one I’ve ever done, but I can see some similarities already, so thank you for including it. I hope you’re still managing to evade any interference, by the way!
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Many, many thanks for all this information, SlowDragon, it’s absolutely fantastic.
It’s going to take me some time to read through all the links you’ve provided, but just wanted to quickly reply to the question you asked, and a couple of the other points you raised.
Are you taking vitamin k2 and magnesium as well?
No. The only other supplements I’ve been taking up until recently, apart from D3, are Turmeric with black pepper to help with my osteoarthritis (although read the packet and found it also has D3 in it too!) and vegan Omega 3. I stopped taking all my supplements 3 weeks ago before I did the blood test though, as wasn’t sure if it would skew the results.
Levothyroxine brands
I never knew there were so many! I moved from down south to the Wirral in 2022 and, up until then, the pharmacy I used to get my levothyroxine from always used to give me the same brand, which was the AccordMercury Pharma one. I’ve only been getting various brands prescribed since I’ve been on the Wirral, so will ask in future that they give me the same brand each time. Hopefully they can do the Accord/Mercury Pharma one as never had any issues with that.
Celiac/Gluten Free
I’ll ask for the celiac test too when see the GP tomorrow, although would have no problem with paying for the test myself if they seem reluctant. It’s really interesting about gluten free, dairy free etc., as I I don’t think I have any issues, but it seems like anything can be going on with your innards and you wouldn’t necessarily know. I’ll follow your advice and see where it takes me with that, as I really want to feel so much better than I have the last few years, so it’s all worth a try, even the gluten free beer 🍻!!
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