10yr History

[NWA6]

Just spent the last few hours trawling through my medical history (it’s all on line). I’m just trying to piece together my history, get it straight in my head before I see a private Endo. Historically my TSH has either gone out of range and therefore my doc has prescribed an increase or I have insisted on an increase due to symptoms despite my TSH being in range. Summer last year seems to be the start of trouble for me. Feeling Hyper so I stopped all meds for 10days in June or July 2018 blood test in Aug said 0.09. So changed dose to 175mcg one day and 150mcg the next. Nov 2018 blood test still said 0.09 (doc accused me of not changing my med schedule, basically said I was lying and that I was still taking too much) I then changed meds to 150 x6 days and 175 x1 day.

10days ago I just increased dose back up to 150 x5 and 175 x2

I haven’t had many FT3 tests but it does look like it doesn’t matter how much T4 I introduce my T3 is still low. This prompted me to get a DI02 test and it shows a faulty gene from 1 parent. Probably my mum as she’s also passed down a coeliac variant, CF. Mum, nanny both Hypo, sister Hyper (now Hypo)

I do have a Thriva test at home ready to test those essential Vitamins but I messed up the first one and damaged my blood cells so I’ve just been putting it off, I’m just in a funk 😒

I don’t have ranges but NHS endo said

Vitamin D - 36

Folate 7.2

Ad calcium - 2.36

I have been taking Vit D + K2 spray 3000 IU for 2wks

It seems like my mood swings from day to day, hour to hour. Some days I know I’m really unwell and I’m mostly on the sofa, then I think I feel better (apart from the surreality) and so I chastise myself for being lazy and try to get on with housework or drive to pick kids up, then I feel so slow and lethargic and huff and puff till I sit back down again.

Weight hasn’t really been a thing for me, I’m tall at 5ft 8 and if I exercise(which I love to do, energy willing) then I’m size 10. If I don’t exercise I’m a size 12. Now I’m creeping up to a size 16 and my weight gain started when I felt Hyper (and TSH was 0.09)

I don’t want to mess up my first appointment with a private Endo. Should I wait and let him do vitamin blood tests? Or should I just stop being a mare and do my thriva test ( otherwise I thinking of keeping it so I can do a test when I feel good)

I’m waffling. I don’t know what replies I’m expecting 🤷‍♀️ Maybe I’m just writing down my experiences/results as a record.

[SlowDragon Administrator]

You mention coeliac variant

Are you on strictly gluten free diet?

[NWA6 in reply to SlowDragon]

Yes 🙂

[Hidden]

Any of your tablets Teva? Teva absolutely ruined me.

[NWA6 in reply to Hidden]

The 75mcg tablet is Teva?? My usual is Activis (sp?)

[Hidden in reply to NWA6]

I have had issues with 25s in Teva in the past. Recently had a batch with 50s and have never felt so ill in my whole time being hypo. I took them all (6months worth) before realising the brand and putting 2 and 2 together. Bloods didn’t really show a huge change but my health felt pretty rock bottom. Within 5-7 days of being off Teva felt much better.

[NWA6 in reply to Hidden]

Does anyone know why some people don’t get on with Teva? I won’t get 75’s after March as I’m opting for 50’s and 25’s so I can manage my own dosing better.

[SeasideSusie Remembering in reply to NWA6]

Teva is a lactose free tablet. Other Levo tablets contain lactose, and Teva contains Mannitol instead. It's very likely that people are having a reaction to the Mannitol.

It seems that the recent problem in France when Merck reformulated their Levo was due to Mannitol being used instead of lactose, see

thyroiduk.org.uk/tuk/treatm...

Some people do well on Teva, but hundreds, if not thousands, have experienced problems.

[SlowDragon Administrator]

Posts about Teva

It's a Marmite brand in that many, many patients can't tolerate it. But a few low it

healthunlocked.com/search/p...

[NWA6 in reply to SlowDragon]

I wouldn’t know if I was having problems with Teva because I’ve only just started educating myself about my condition. So for the last 10yrs I wasn’t even aware that there were different brands of Levothyroxine because it has always come in the same box and I haven’t looked at the packets. But this last 3mths has been an eye opener and so now I know what brand I’m on (in the last 3mths)

Atm I’m concentrating on the fact that I have low vitamin levels and looking back at my medical history it seems that I always have (in range but barely in some cases) and I haven’t had many/any blood tests for most vitamins. Also with the result of faulty gene from DI02 test I’m hoping that T3 will stop my escalating need for T4.

[SlowDragon Administrator in reply to NWA6]

I suspect the gluten intolerance is also linked to being DIO2 positive

Being gluten intolerant makes need for the addition of small dose of T3 more likely

Are you soya free? Ideally including soya lecithin

Always collect paper prescription from surgery. That way you have more options on trying many different pharmacies to always get same brand

Small independent pharmacies are often much more helpful

Research article about Levothyroxine brands not being interchangeable

academic.oup.com/jcem/artic...

"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)."

[NWA6 in reply to SlowDragon]

Thanks. I had coeliac testing in my 20’s when I felt lethargic but no other ‘symptoms’ My Aunt has Coeliacs and in the 80’s they only just became switched on about what it was, she looked awful and IBS and skinny as a skeleton with flaky face. So ofcourse that’s what I thought having coeliacs would look like. Anyway I changed nothing because the Dr said I don’t have Coeliacs. Then for the last 4yrs I haven’t eaten things that obviously contain gluten in my everyday diet but I would on a Saturday have a Naan bread or a spaghetti bolgnaise as this is my cheat night. Also ofcourse I wouldn’t look for gluten in ingredients or worry about hidden gluten. So I haven’t been ‘gluten free’ for the last 4yrs up until I got a 23andme genetic test last Oct just for fun. It was through this test that it said I had a variant for Coeliacs which may mean that I may develop an intolerance to gluten but my risk was low. So my interest was peaked and I began to read about gluten sensitivities and how there is no definitive test. So that’s when I started to adjust my diet. Slowly at first up to a point where I haven’t eaten gluten for about 3wks now. It wasnt that hard, I don’t eat gluten as a rule but now I look for the hidden gluten ie crisps or gravy ect.

[SlowDragon Administrator in reply to NWA6]

Yes I had negative coeliac test twice, twenty years apart. Both negative. Absolutely no gut symptoms, only low vitamins (and inability to walk)

Yet endoscopy showed damage as if coeliac. Subsequent NHS DNA test said unlikely to be coeliac

Strictly gluten free, does need to be absolutely strictly gluten

NHS nutritionist told me off, for only having a designated "gluten free slot" in family toaster for my gluten free toast. Was told that was not good enough. Has to be separate GF toaster, make sure your not sharing butter, jam, cutting boards etc etc

You (and the rest of the family) soon get use to it.

Each time we eat any gluten it takes several weeks/months to recover

chriskresser.com/the-gluten...

M&S are good on gluten free ready meals

[NWA6 in reply to SlowDragon]

Meant to say, I’ve never eaten soya. I’m a meat and veg girl. Everything cooked from scratch, except Sat Night cheat nights. I do miss them 😩

[SlowDragon Administrator in reply to NWA6]

Soya hidden in most chocolate, and many puddings, ice cream etc too

[NWA6 in reply to SlowDragon]

Not a pudding or ice cream girl. But have loved Galaxy and dairy milk in the past? Do they contain Soya?)I haven’t eaten a bar of chocolate for months. I’m just not hungry anymore. I sometimes force myself to eat at 2pmish (yesterday it was 2 bits of salmon, today it was homemade squash soup) and then an evening meal with the fam at around 6pm.

[london81]

have you had antibodies tested? are you diagnosed hashimotos?

may be some underlying deficiencies too as you say testing should really be done soon so can cover that before endo,

found this helpful page on STTM which covers lots of ifs, buts and maybes of symptoms and enduring issues despite blood test results:stopthethyroidmadness.com/l...

[NWA6 in reply to london81]

Hi London81. Yes I have Hashimotos, so does my mum and NaN and my sister Graves. I also have a faulty gene as I had the DI02 test a month ago. I’ll look at your link 😀

[london81 in reply to NWA6]

that explains your fluctuations. so it could be a conversion issue, or low vitamins or minerals, or pooling t3 due to iron or cortisol, yes have a look at the link as far as i can see it’s extremely comprehensive at covering where issues could lie when still not feeling well and in your case when t3 isn’t rising despite treatment.

I suspect we have that gene issue and intend to help my father get tested soon as he’s really suffering.

good luck

[NWA6 in reply to london81]

Yes I think it’s a mixture of both. I’m very lucky that i am converting but need to optimise my natural conversion because I think it’s always best if we can do it ourselves instead of synthetics but I think my history shows that I have a natural limit. My TSH has always gone down after increasing my T4 but my T3 has never ever even stretched.

My mum has always had a bad time with Hypo symptoms but has never questioned her doc when he says her TSH is normal. N.Ireland don’t do FT3 testing ever unless under an endo. When I’m welll I’m going to help her get well. She’s only 66 and having a terrible time coping with my Dad and his Alzheimer’s (although he’s somewhat of a fluke as he was diagnosed 10yrs ago but only now starting to show serious signs, ie repetition, I’ve been here before ect, he’s an anomaly)

[london81 in reply to NWA6]

on the issue of prescribing t3 specifically have a look at my latest post and replies as there is some useful info to take to endo to explain how and why they can prescribe t3. and an explanation of the political and legal issues that are moving along to try and challenge the companies over charging nhs which in my opinion is at the root of the problem, meaning nhs don’t want to prescribe or admit people need t3, because frankly they can’t afford to treat the thousands of people who need it. as an example the cost of t3 for nhs was 15£ it’s risen by hundreds of pounds for one month supply, so in my opinion we need to support the nhs to get cheaper t3 then we can all get it when we need it!

[NWA6 in reply to london81]

Thank you I will read through it. I was questioning this sort of thing in another post of mine where I was asking on anyone had ‘challenged’ their Endo/GP/MP formally. By that I meant writing letters ect. Trying to get a voice out there from all of us. It would be great to have one of those types of letters that people use when they’re complaining or wanting to get a POV across without the emotion. Like a standardised letter that we can all use with facts and figure ect. We all know how heartless the feckless are. They don’t want to hear our sob stories of how this is affecting our lives. They just want facts and figures 😩