Just got Hashimotos diagnosis from private endo - Thyroid UK

Thyroid UK
102,763 members118,626 posts

Just got Hashimotos diagnosis from private endo

msmono
msmono
13 Replies

Hi, (also posting in here as green-rose as somehow ended up with two log-ins because if my poor memory!) The private endo was great and I’m not surprised at the diagnosis. It felt good to have my symptoms acknowledged (as opposed to feeling written off by my GP as some middle-aged hypochondriac) and I wanted to have a diagnosis in case I need my GP to prescribe in future. The endo wants to try me on 50 of levo BUT, due to the excellent info I’ve had on here, I’m weighing up whether to try super-healthy eating and vitamins and try to improve my symptoms that way. Im beginning to think I’m wheat or gluten intolerant - (coeliac test was negative) the endo disregarded my ‘diarrhoea every morning for years’ but surely this cant be good? (Vit b12 low/ferritin low/ d just in range/ folic 20/TSH 4.1/ FT4 13.7/FT3 4.3./tp abs 67.9/thyroglobulin 616.)

My question is, is there anything to lose by just trying the levo to see if it helps my awful symptoms?

Thank you so much for all the advice so far i literally would be desperate without it.

13 Replies
oldestnewest
HiddenThis reply has been deleted
msmono
msmono
in reply to Hidden

Thank you for your advice.

Reply
Hidden
Hidden

Treatment for hypo can take a while to sort out. If I had your results I would be keen to take some levo, it works very well for the vast majority of people. We dont tend to hear much about that on this forum as people come to us when their treatment is not working. I would also suggest you work hard to get your vitamins and minerals up as thyroid hormones need ferretin, folate, B12 and Vitmain d at good levels for your body to make good use. Diarreah for years does sound like some kind of intolerance and becoming gluten free would be the first port of call to see if it resolves and also helps reduce your antibodies. Can I suggest that you have a look at the vitamin D council website for guidance re treating your low levels and D Chandys B12 support for help with B12. You can buy some ferretin from local chemists and I would also suggest lots of vitamin C to help absorption of nutrician and improve gut health ( it can make you a bit loose if you have too much ). It is going to take a while for you to get better so keep coming back to us.

1 like
Reply
msmono
msmono
in reply to Hidden

Thank you so much for your lovely, positive post. I totally see what you mean about people coming here more when things don’t work. I’ve been coming round slowly to the G.F. idea for the past couple of weeks, I love wholemeal bread and pasta so much! But what price a healthier, better life? I had it in mind to try healthy-living alone but i feel so awful today that i may try the levo as well. Going to think it over today. Thanks again (and for the nutrition advice too). 🙂

Reply
765nottyash
765nottyash
in reply to msmono

Levo, never worked for me but Nature Thyroid has been a god send.

1 like
Reply
msmono
msmono
in reply to 765nottyash

Its really helpful to know about others experiences - at least I wont feel stupid and desperate (as i have done in the past) if it doesn't go smoothly. Thank you

Reply
765nottyash
765nottyash
in reply to msmono

I have found diet to be the most helpful for me.

1 like
Reply
Hidden
Hidden
in reply to msmono

The levo might not work straight away, it takes time to get it to the right level in your body or sometimes people find they take it and feel better for a week or two then go downhill again which usually indicates that it suits them and they will need an increase at the end of the initial six weeks. I have tried gluton free even though I dont have autoimmune and found it difficault. I think it s better to go for different foods altogether rather than bread subsitutes but others who have been able to stick to it will be better placed to advise.

2 likes
Reply
msmono
msmono
in reply to Hidden

Yes i think gluten free bread is pretty dreadful. Ive cut out sugar for 5 weeks now (because i get bad hypos), bread next but i cant give up my tea! Thank you for the heads up regarding dosage-i feel so bad so many days that anything will be an improvement!

Reply
Craig914

How do you go about seeing a private consultant and costs? Struggling myself and I have symptoms, in range thyroid function (posted results in earlier post) and raised TPO suggesting Hashimoto’s. GP’s won’t entertain anything and treating my symptoms separately if at all.

Reply
msmono
msmono
in reply to Craig914

Hi, first of all i got a list of endocrinologists from someone at tuk admin. I will track down the email address and dm you. Then i googled the nearest ones. I paid £200 for a half hour consultation but this varies. I took blood test results with me (full thyroid panel done privately with medichecks) and this probably speeded up the process. Its a lot of money but he's said I can email for follow up and if all is well i won't need another appointment because my gp should prescribe. Even if the levo doesn't work out, I'm glad i have a diagnosis and from being on here i feel positive about what to try next if i need to.

1 like
Reply
SilverAvocado

I think my advice would be to try the Levo. You dont really have anything to lose, because you can always just stop if you change your mind.

I agree with others in the thread that Levo works for the majority of people. Another large group will do well on prescribed Levo plus a tiny bit of self bought T3. The only way to find out if you're one of them is to suck it and see! Anything you find out in your journey will be useful information that gets you one step closer to feeling better.

You might even be one of the really lucky ones, and feel tons better almost immediately! Although it can easily take 6 month to get settled on Levo, so be prepared to stick with it, tune your dose to your personal needs, and be aware you may feel worse for some of the time before it gets better.

Reply
msmono

Thank you, my resolve to think it over lasted about two hours this morning as i felt so rough! Took my first dose and dint feel worse so thats good!

1 like
Reply

You may also like...