I've had one of those horribly frustrating and upsetting GP appointments today where they tell you the usual thing... drum roll..... 'your thyroid is normal' but today she surpassed herself. I asked if I could be referred to an endocrinologist as I still have hypo symptoms. Her reply was 'you don't need to see an endocrinologist for hypothyroidism, we treat that here' I repeated that I still have hypo symptoms. She said 'yes we do find some patients still have hypothyroid symptoms despite the medication'......... thankfully my husband was with me on this occasion to witness this spectacle. There's a long saga before all this which I won't go into just now, but my husband has now agreed to see if we can find a private doctor. I did see one in North London last September (we live in Bedfordshire) but had to give up in the end as I felt after several months and a great deal of money on consults, urine test, saliva test, blood tests and supplements, I didn't really feel much better.
Initially I've been trying to find a doctor / specialist near to home, but now I don't mind where I go, if it means a long distance or an overnight stop somewhere, it would be worth it. I have recently bought some T3 and was going to try it, but would prefer to work with a doctor before trying it so that there is support available. If anyone has any recommendations, please PM me. Many thanks.
Thanks Clutter, I already have that list, got the previous doctor from that list, but I felt he was rather 'business' oriented. Have heard other people say similar. Have been through the list with a fairly fine tooth comb. One of the doctors on the list was in trouble for giving a small child a wrong vaccination. I did report this back to Louise.
Another one isn't accepting any more clients this year. Another one I saw very bad reviews of on here. So I just thought I'd ask if anyone had any personal experience of someone who gave them hope
Also the list given by Louise (as I understand) isn't necessarily endocrinologists, the list states that its 'private doctors and practitioners with a special interest in thyroid'
Do you know what your blood results were? You're entitled to have them - some doctors will charge a small fee for printouts but shouldn't charge for letting you copy the, down from the screen.
How much levo are you taking and how long have you been on that amount?
Hi Jazzw, yes I have all my blood results going back around 9 years and more recently on printouts. Have never paid for them, I just tell the surgery I want them for my personal records and they give them to me.
I'm currently taking 75mcg Levo and have been for some years. GP overlooked thyroid test for a year (I had been privately in between) so had a blood test about 2 months ago. TSH was 4.5 and I did push for T4 but can't remember the result just now. GP suggested trying an increase to 100mcg which I tried for around 3 weeks, but then started experiencing adverse symptoms. I thought I had a bit of anxiety which I hadn't had in years, went to one GP who said I was fine, went back 3 days later, another GP, he went overboard saying he'd like me to go for chest x ray, blood test and ECG to rule out embolisms! I asked him if symptoms could be related to increase in Levo. He said no. Went same day to hospital for all the tests. All clear. Discussion with consultant afterwards. He said symptoms directly related to increase in Levo. Suggested trying 100 / 75 alternate days.
I tried it but could feel symptoms creeping in, so stayed at 75mcg. Obviously I don't tolerate Levo that well and really I'm not sure I'm converting to T3. Had a private blood test done about a month ago through Blue Horizon which is the one which showed the antibodies. I showed the 2nd GP the blood test result and pointed out the antibody result and he just skirted over it, said that didn't matter and gave it back to me.
It may be that you don't tolerate levo well because your iron is low. Have you had your ferritin levels checked? Ferritin is needed for conversion of levothyroxine to T3.
ha ha you're right I think I glanced at folate out the corner of my eye and didn't really look properly. Somewhere I'm sure I've had ferritin checked but I've got so many results here, it may take a bit of detective work to find it, or it might be a bit old. Though I'm also post menopausal, so wouldn't have thought ferritin should be low, but that may be a daft analogy.
Thanks Jazzw, I do get all the iron results mixed up but this was the only one there, ferritin was last tested in March 15 from what I can see of all the results I have.
I've been part of a FB forum for over a year and still learning, there is so much to try and absorb to get a good understanding. But I do find if you try and talk with knowledge to the GPs they just think you're bonkers and of course you've been looking at the internet!
Despite having had a Blue Horizon test done about a month ago, I'm wondering whether I might just have another one done with full panel including Reverse T3. I missed this one last time and they won't do it on its own afterwards as they say it has to be done first.
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I've always tolerated the Levo OK and I'm aware it must be doing something because on the odd occasion I've run out without getting a new script in time, I feel drained if I leave it off for a few days. But trying to increase it to 100 from 75 caused horrid symptoms.
Thanks 'reallyfedup123' (love that name lol) could you PM me the doctor's details anyway. My last private blood test showed TP antibodies, so I believe I have Hashi's and I seem to be reading that NDT maybe doesn't work so well for those with hashi's. Mind you I've read so much in so many places including two books (STTM and Paul Robinson's Recovering with T3) I'm not sure whats right and wrong anymore.
ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells.
As you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too. Selenium can help too
Assume you know that Levo generally should be taken on empty stomach and no food or drink for at least hour after. Many take on waking, some prefer bedtime, either as more convenient or perhaps more effective. No other medications at same time, especially iron or magnesium, these must be at least 4 hours away
Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about B12, folate, ferritin and vitamin D.
Thank you slowdragon. I wouldn't dare ask the GP to check vitamin levels, its hard enough to get them to check T4 and sometimes even when they ask for T4 the lab where the tests go will test TSH and if within range, they don't do the T4.
But I did have vit and min levels checked on the recent Blue Horizon test and they were all good.
As for gluten free, thanks obviously for that, but I forgot to mention I also have Coeliac Disease, so have been on a gluten free diet over 40 years (sorry I should have put some of this in my original post, but I was so angry about the GP today I just bashed out this mornings bit).
Yes also aware to keep most supplements at least 4 hours away from Levo. I usually take Levo first thing try and wait an hour before eating. I did try switching Levo to night time couple of years ago, but found it disrupted my sleep and at the moment sleep isn't really one of my problems (unusually)
I think I've read til I'm blue in the face but still I try to read up more. Brain fog gets in the way of remembering some of it, so have to re read anyway.
I can't remember where I read it, perhaps wondering if I imagined it lol
Georgina61 do you mean the thing about taking ndt if you have high antibodies? I had a doctor tell me that once and have read it elsewhere but the fact is that a lot of folk w high ABs do take and thrive on it.
punctured bicycle: yes that was what I meant, though my antibodies aren't that high, but they are there and as I haven't been tested for ABs for some time, I don't know how long they've been there. Wish I could remember where I've read it.
After doc told me that I posted a question here re high ABs and ndt and had a lot of positive replies from people doing well on ndt despite high ABs. If yours aren't high I wouldn't worry about it, or to the point I wouldn't let it stand in the way of trying ndt if you fancy a go.
Hi Cunnicar, I haven't quite got the hang of it all on Health Unlocked yet but I've been private messaging with a couple of people and I believe if you click on their name so that you get their profile page, then at the right hand side a little way down the screen, there is a little white box which says 'message' which you click on and then you can send a private message. After you've done it, it tells you at the top 'private message between ...... & .....'
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