Just had a GP appointment yesterday about annual blood results- I have been on thyroxine since about 10 years ago, and added t3 (buying online) in the last 4 years, when I can afford it, as I previously saw endocrinologist who said my ratio of t3 was low, but he wasn't able to prescribe it on the NHS. The results of annual testing were:
TSH 0.23 (range is 0.5-2.5 I think)
T4 9.9 (range 7-17)
GP is a bit concerned that TSH is low- but says it has been 'more suppressed' in the past and then went back up so she just wants to repeat bloods in 3 months (I also have to go back for ferritin tests then as had low and have been prescribed iron so it's fine with me). She says 'maybe my body just likes to be in the low end of range for t4'- this is on the basis that in the past when my t4 was 6.8 (below range- and I felt crap tbh) the TSH was in range. I think this is a bit daft, really, because why on earth would my body like to be in a state in which I'm exhausted, achey, etc just on the basis that TSH is in range then, but obviously I don't have a medical degree (do have bioscience PhD but not specialised in endocrinology so I can't really comment).
I don't particularly want to go back to the endocrinologist as he was extremely rude and sarcastic when I saw him (I took a list of symptoms to which he said 'well you seem to be saying you have something wrong with every system in your body', and said he 'wasn't going to get into some debate with me' etc- it turned out afterwards that I also had pernicious anaemia which does in fact affect many systems in the body so was reasonable enough that I had something wrong with many of them!) I may be able to see someone privately at some point although not immediately.
I really want to know if there's anything I should be saying to the GP at this point- I don't want my t4 reduced really as I've been stable on current dose (100mcg) for quite a while and I can't deal with having symptoms again- I've already had issues at work with this, the pernicious anaemia symptoms and another unrelated health issue and will be in trouble if anything else comes up.
I hope this makes sense to someone, apologies if I've not explained anything well and feel free to ask questions to clarify!
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misfratz
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Does your GP know you are self medicating T3 ? No FT3 test result Considering you are taking a 100 mcg of T4 your result is still low in range. This could be due to absorption issues. As you have PA I am wondering if you also have Hashimotos - both auto-immune. Have your thyroid anti-bodies been tested ?
Low Iron could also mean LOW VitD - do you have a result for that ? Also was Folate tested when they discovered the PA ? - B12 and Folate work together in the body so very important to have good levels - halfway in range. If you treat the low Ferritin then taking VitC with each dose could help the absorption.
Always obtain copies of all your test results with ranges - to make posting easier and for members to work out what is going on !
Low B12 and Low Thyroid have many overlapping symptoms
Hi, yes, I do have antibodies- I think endo said it was hashimotos that I have but GP has not said this. I did ask whether the PA could cause absorbtion issues for other things (especially as I have been on and off iron deficient for the last 5 years- I found a paper on pubmed saying this can be because of the parietal cell damage with PA) but GP was skeptical. They did folate with the B12 test, and it was ok, so not too worried about that. I eat a fair amount of fruit/veg and wholemeal so that should help I think.
I've struggled to find good information on where each nutrient is absorbed, really- I think iron is in the intestine rather than stomach? B12 is mainly in stomach I believe, and the PA they diagnosed with gastrin and parietal cell antibodies so think that is the cause. I've not had vitamin D tested but my daughter was tested as deficient previously, so now we all take supplements through the winter. I also take B12 1000mg between injections, because was finding I was getting irritable and tired towards the end of the 3 month period (the nurse also tries to schedule them a bit closer together e.g. 10/11 weeks rather than 12- unfortunately they're under a lot of pressure not to do them closer as NHS trust is already in special measures and I don't want to pester them about it because I know they're already under a lot of stress- also tbh I hate needles so don't want any more if I can avoid it and the sublingual B12 seems to work ok).
I've not told GP about T3 'formally' as I'm worried it's illegal to buy? I really can't get a criminal record over it as would affect career quite badly. I get it imported- keep meaning to get a private endo appointment and get a private prescription but I need to save up for this and I'm not sure how easily you can get it on private prescription in the UK anyway- NHS endo seemed to think he couldn't order it to prescribe, at 5mcg, which was what he thought was needed. I've found it relatively easy to find via import pharmacy, so I'm not sure why it's not possible to prescribe in the UK.
Thanks so much for the advice, it's really helpful!
So the Folate was OK - was it mid range ? We are what we absorb rather than what we eat with Hashi's and immune issues - sadly ! Never trust a Doc when they say fine or worse - normal. They mean in range but is where the result is in the range that is key !
B12 is obtained in the stomach when the parietal cells can do their stuff and the binding of the B12 molecules with Intrinsic Factor enables the B12 to be transported to the Terminal Ileum safely where it is directed back to the liver. I only know as I do not have a TI due to lots of surgery for Ileo-caecal TB and then Crohns
How much VitD are you taking ? - and how about the co-factors ? Your VitD dose should depend on your level when tested. Docs so often prescribe far too little. I live in Crete and tested insufficient back in 2008 after 4 years of living in the sun ! I take 5000 IU's - sometimes 10 during the winter months and this keeps me around 60 - different measurements here ! - equivalent to 150 in the UK.
Are you swallowing the B12 tabs - or do you have the sub-lingual lozenges ? I SI inject weekly - as we are able to buy OTC for pence. Again stomach issues may prevail if swallowed.
Loads and loads of people import T3 on this Forum - it is not illegal if it is for your own use. I believe helvella has the up to date information on this matter. Not prescribed in the UK due to price hikes by greedy companies overcharging the NHS hugely so it has been severely restricted. LOADS of posts here on this Forum - you can use the Search Thyroid UK Box at the top of the page. It is still possible to obtain T3 via an Endo - so you could ask a new question and members will send you a PM.
If you have neurological symptoms with your PA the Guidelines from the Haematological Society states injections should be given every other day until symptoms subside ...
Oops yes you do have Hashimotos ! - have you tried being gluten free to help reduce anti-bodies ?
Thanks, I didn't know that- will look into it- I've had coeliac blood test when they found the B12/pernicious anaemia issue and it was negative so I didn't think to research further.
Very good, clear, and helpful advice by Marz. The one thing that I would add is to ask your GP not to reduce your dose before testing your T3 levels and all other investigations that Marz has mentioned.
Thank you, I will ask but I'm not sure what lab tests they can order (it's not the GPs fault, she's lovely, but sometimes she's ordered lab tests and the lab has refused to run them because it's not 'allowed' for GP to order or if they say there's been another test too recently). Very useful advice nontheless so thank you for that!
You can get the tests the GPs unable to do from one of our private labs who do home pin-prick tests. If you do decide it has be an early a.m. blood drawn and fasting. Also you should allow gap of 24 hours between last dose amd the test and take fterwards.
Blue Horizon and Medichecks. Medichecks have a special offer every Thursday.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, T3 twelve hours delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Thanks, that's a lot to think about! I did have a coeliac test at around the time I was diagnosed with pernicious anaemia but it was negative. I don't actually know what test it was though. I don't feel like I have big problems with gut but I suppose it's the kind of thing you might not have symptoms for. I'll have a read- thanks again for all the info.
I had absolutely no gut symptoms at all (many don't)
Confirmed by endoscopy as severely gluten intolerant. So bad I had to have follow up DNA test which eventually ruled out coeliac and "just" gluten intolerance.
But as gastroenterologist said ......that just because it's not "coeliac " doesn't mean it's any less serious.
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Considering you are taking a 100 mcg of T4 your result is still low in range. This could be due to absorption issues. As you have PA I am wondering if you also have Hashimotos - both auto-immune. Have your thyroid anti-bodies been tested ?
anyone on liquid T4 and if so, does it work for you?
High TSH AND high T4 after thyroid removal
Very confused! Low T4 Normal TSH
