Any advice please? : Hi everyone, I posted a few... - Thyroid UK

Thyroid UK

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Any advice please?

Diane17884
Diane17884

Hi everyone,

I posted a few days ago but never got a reply :( so I'm trying again as I would really appreciate some opinions on my blood tests. I'm new to all this and feeling a bit overwelmed and overloaded with information.

I finally got a print out of all my recent test results. My doctor says all my vitamins/minerals are within range however I feel a few may be on the lower range of normal.

Im currently taking 250mcg of vitamin b12 oral spray and eating foods high in B12. I've been severely unwell through all this and lost almost 3 stone in weight (now 7st 12 :( and hardly eating due to low appetite and anxiety so could be part diet that I'm low. I also suffer with gut problems/food intolerances. However since starting levo my appetite is better and I'm eating better. I may increase this dose as I realise its probably unlikely to help however I'm cautious as I read b12 and b complex can cause anxiety which I already suffer with.

I had to test privately for my vitamin D results as doctor won't test. Hoping I will get my results next week.

I started levo on 18th May 25mg and was increased to 50mg after my second lots of blood tests which I started 19th June.

9th May (diagnosed with hypothyroid)

Serum TSH - 54.6mU/L (0.2-4.5)

Serum free T4 - 10 pmol/L (9-21)

Serum magnesium level 1.01 (0.70-1.00)

6th June (Diagnosed with hashimotos)

Serum TSH - 23.5 (0.2-4.5)

Serum free T4 - 12 pmol/L (9-21)

Serum ferratin - 45 ug/L (15-200)

Serum vitamin B12 - 287ng/L (180-2000)

Serum folate - 6.7 ug/L (2.8-20)

Coeliac disease screen 1.4U/ml (0.1-5.0)

Thyroid peroxidase antibody >1000 WHO Units (0-100)

I also have a full blood count if needed.

Im 5 weeks gluten, dairy, soya and egg free.

Thank you in advance for your help. This site has been a wealth of knowledge since I've been diagnosed and having somewhere to turn for advice is very much appreciated. I'm so desperate to get well but feel I'm on my own. Doctor seems happy to give me levo and leave me to it x

19 Replies

You will need to get blood tested again 6weeks after your increase to 50mcg levo. You will probably need a few increases at until your tsh is nearer 1 or you feel well.

Post your results and ranges after each blood test and people will comment and help you.

I'm afraid it's a marathon not a sprint to get well again. Anxiety can be a hypo symptom when undermedicated. Hopefully this will improve as your levels get better.

Thank you wightmouse. Yes it does seem to be a long process. Which is really difficult for us all. I was very sick for over a year whilst being fobbed off many times and told its just anxiety when I knew it was something more. I'm sure I'm not the first and I won't be the last judging by the many posts about gps who don't seem to have a clue. I have seen some slight improvements which give me hope :)

NickP1
NickP1 in reply to Diane17884

I'm not going to comment on your blood results, the only knowledge I have is from my own experiences, but I will say do whatever you can to get any stress you have in your life gone, its the prime source of auto immune diseases...

Diane17884
Diane17884 in reply to NickP1

Hi nick. Thank you for your reply :) Yes I'm trying hard to cut stress and relax more etc but to be honest the only main source of my stress at the moment is caused by my health. Catch 22! Lol. Now that I know what is wrong tho I've found that I am less stressed and anxious as everything makes sense now, where as before I was worried sick thinking all sorts.

NickP1
NickP1 in reply to Diane17884

The mind is our greatest friend and attribute and also sometimes our biggest enemy. ultimately its always there for our safety, sometimes it over reacts. Its screwed me up more times than I care to remember.

At least you have the strength to go gluten, dairy, soya and egg free, I am unable too, tried and lasted about 5 minutes..

Diane17884
Diane17884 in reply to NickP1

Agree 100%, very powerful thing and yes it's screwed me too lol.

Thank you. I'm pretty desperate at this point and willing to try anything that may help. I've found it a lot easier than I imagined so don't give up. You can only try again :) I've deffo noticed some improvements in regards to my gut and that's spurring me on to keep going. Maybe it would do the same for you

NickP1
NickP1 in reply to Diane17884

May be worth trying kefir first thing in the morning, obviously well away from the levothyroxine.

I understand a lot of problems can be caused by leaky gut syndrome, kefir helps to protect the gut. You can get it from most Polish shops..

Diane17884
Diane17884 in reply to NickP1

I have an intolerance to dairy but I had a google and they do a coconut based kefir so I will look into it thank you

Your posts and replies can be found here :

healthunlocked.com/user/dia...

You have 19 replies to your last post. :)

Diane17884
Diane17884 in reply to greygoose

I deleted my last post and reposted hoping that it was maybe justi missed as no one replied. I've never been able to post all my results before now and was hoping for some opinions :)

greygoose
greygoose in reply to Diane17884

OK, well, you're still very hypo, still a long way to go. And, your doctor is not helping, because he started you on too low a dose - unless you're very old, very young or have a heart condition. So, it's going to take you that much longer to get to the right dose. But, do make sure you go back for a test six weeks after starting the 50 mcg levo.

When you go for you next test, make sure you go early in the morning - at least before 9 am - and fast over-night. Leave 24 hours between your last dose of levo and the blood draw.

Your ferritin, B12 and folate are all too low. With that low B12, your doctor should be testing you for Pernicious Anemia. I don't know much about that, so you might want to post a question just asking about that.

And, of course, you have Hashi's. How much do you know about Hashi's?

Diane17884
Diane17884 in reply to greygoose

Thank you very much greygoose. My doctor seems to be testing every 4 weeks at the moment will that be enough time to see whether a dose is efficient? I'm due my next test in 3 weeks. It seems the 25mcg more than halved my TSH and upped my Ft4 by 2. My gp was quite happy with this. Does that mean I am responding well to treatment and is it a good sign for the future? Thank you for the advice. I take my levo at night usually around 11.30pm would that be okay for test the next day or should I skip it?

I was a little concerned too with the levels you mentioned. Wonder if it's worth posting in the PA section? Like yourself I don't know much about it either.

And I didn't know anything about hypo or hashi until my diagnosis. In fact I was relieved almost happy to have a diagnosis after so long feeling sick. Thinking oh that's fine I'll take a tablet a day and be fine. Not quite the case is it! Lol. I've been researching lots and feel I have a good grasp of it now (even with my brain fog) altho I'm sure I have much more to learn. This site has been amazing. I've learnt more here than anywhere.

greygoose
greygoose in reply to Diane17884

He's probably testing every 4 weeks at the moment because your TSH is still too high. As long as he's giving the appropriate increases in dose, don't worry about it for now. But, as the TSH gets lower, the tests should be more like 6 to 8 weeks apart. Anyway, testing every four weeks is better than those doctors that only test every three months!

The fact that 25 mcg reduced your levo by half is pretty meaningless, there's no correlation to how well levo is working and what will happen in the future. It's not the TSH the most important number, it's the FT3 - especially when the TSH gets below 1.

It would be better if you could take your levo earlier in the day, the day before the test, just for once. It won't change the way you feel.

The PA forum know a lot about B12, it's true. But, they know - for the most part - very little about thyroid and how low nutrient levels affect hypos. I'm not saying don't ask them, but I am saying, be aware of that.

Once you get on the right dose of the right thyroid hormone replacement for you, it can be as simple as taking a pill every day. It is for an awful lot of people. But, what they don't tell you is just how long it can take to get to that point. :)

Diane17884
Diane17884 in reply to greygoose

Oh, well that's good then. She's doing something right. Ahh I thought maybe that was a good sign. I haven't had my FT3 tested. Should I? And will they test or do I need to do it privately? Thank you I'll take it earlier in the day :)

Im hoping that maybe my levels are low through poor diet (I was hardly eating) and my gut issues rather than having something else wrong with me. Maybe I'll suggest PA to the doc and ask if it's possible to test. Although she's quite adamant that my levels are in range so I'm not sure. Plus I'm sure she thinks I'm just over anxious. I'd prob still be undiagnosed if I hadn't pushed so hard. It's easy to feel like a hypochondriac with so many symptoms isn't it.

Should I maybe try supplenting with iron, a higher dose b12 and b complex? I'm pretty confused by all the vitamins and minerals to be honest. I'm awaiting vit d tests. So depending on results I'm going to supplement, I know I also need k2 and magnesium alongside and going to start vit C too. I want to take it slow though as I feel that if I take too many at once I may not know what's causing any adverse reactions.

Thank you so much for taking the time to reply and your advice x

greygoose
greygoose in reply to Diane17884

You don't really need to do your FT3 until the TSH gets down to 1. It's obviously going to be low until then.

'In-range' is not always the same as 'optimal', and low B12 can have serious consequences. But, I don't think it's the symptoms that make you feel like a hypochondriac, it's the doctor's attitude towards them!

You mustn't start more than one supplement at a time, so you have time to wait for your vit d results. You say 'a higher dose of B12'? So, you're already taking B12? Those results will be skewed then. No point in doing the test if you're taking B12. You would have to stop them for 5 months to get a true result. But, you should be taking a B complex - preferably one with at least 400 mcg methylfolate, and that will bring your folate up.

You're right about the K2 and magnesium with vit D3, but even if you don't need D3, it's still a good idea to take some magnesium. We're all low on it. Vit C should be taken with the iron, to protect the stomach. :)

Diane17884
Diane17884 in reply to greygoose

Oh so I don't need to worry about that at the moment then.

I started b12 a week ago which was after my results. I'm only taking a small maintenence dose of 250mcg via oral spray and trying to eat foods higher in b12 too.

I used to take magnesium citrate to help me relax before bed but I stopped to see if it improved my diarrhea (which it didn't) but I'm going to get glycinate this time as I know it's gentler. But yes I will take some anyways as I found it helped.

I will have a scour and get a b complex too with your recommendations. I'll be rattling soon lol But yes I agree one supplemt at a time.

Thank you again greygoose I really appreciate your help. Hopefully I'll get there.....Just need to be more patient I guess :)

greygoose
greygoose in reply to Diane17884

Oh, I thought you meant you'd been taking B12 prior to the tests. So, yes, in that case, you do need to worry about it. And you need a lot more than 250 mcg. You need more like 5000 mcg for a while, and then a maintenance dose of 1000 mcg.

Get your supplements on Amazon, it's far easier. Plenty of choice and good prices.

And, yes, you will get there, but, yes, you do need to be patient. :)

Diane17884
Diane17884 in reply to greygoose

Thank you again you've been really helpful. I really do appreciate it. Yes I'm shopping through amazon. Just need to wait until payday now lol

greygoose
greygoose in reply to Diane17884

You're welcome. Good luck! :)

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