Hi there. I've been borderline hypo for many years now with all the symptoms but GPs have never pursued Hypo with me. A few mths ago my TPO antibodies were tested and they came back as 500 (normal range 0-50). I have been referred to see a Dr B Issa at Wythenshawe Hospital in South Manchester next month.
I'm just wondering:
A) has anyone had experience with Dr Issa? I know from reading on here that Endos vary considerably.
B) am I likely to get any meds (my usual thyroid are within range although borderline)
C) what is the best way to play it with the Endo? I have all tend hypo symptoms and would love to try meds to see if it makes a diff.
Cheers
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Ivyfoy
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I'd be interested in this too as this is me although my antibodies are a little lower.
I am also interested in this. Sounds like me too. I'm suffering badly with swollen feet legs and ankles and feel fluey most of the time. Waiting on appt too.
I've only seen an Endo once and not the one you mention so can't comment on them. I was very symptomatic but borderline when I saw the Endo. I made a list of all my symptoms and any other details of medical history that indicated hypothyroid. I was lucky, she read the list during the appointment, she then organised lots of bloods and a scanthen test. It was only then that my TPO results came back in the 300's, so well above range.
She then prescribed Levo.
A list could help you also, even if the Endo will not read it, it could be a good prompt for you. Also working through a good list of signs and symptoms will help you realise which others you have, they creep up so gradually!
My treatment is still not working, I changed over to NDT myself, it's a bit better but still I'm not well. But I believe I've been unwell since a child so it will take longer to get better.
Hi Ivyfoy and mauledtodeath! I too have Hashimoto's but fortunately had a diagnosis just over 18 months ago. Have just checked and my antibodies were only 139 when I was diagnosed. I would be really interested to know your other TFT results - TSH, T4 and if you have had it done T3 - because they will also presumably be part of the conversation that you have with the Endo.
I'm afraid, Ivyfoy, that although I am not that far North of Manchester, I haven't heard anything about a Dr Issa. One thing that does strike me though is that, certainly as far as GPS go, there seems to be such a MASSIVE variance in practice with regard not only to diagnosis but also treatment. I wonder if it is like this for other conditions. (Anyone else care to comment on this?)
If you are suffering symptoms then push it. I wouldn't be afraid to say these problems are significantly impacting on your quality of life. I think I was undiagnosed for a while and it has knock-on effects. Your body is not supposed to function with low thyroxine levels. Peatfield mentions in his book that it is a lot easier to treat if you catch it early. The other thing is, that all that you read your doctor should not go by blood tests alone. (eg. Toft in "Understanding Thyroid Disorders" says "Thyroid blood tests should not be interpreted in isolation and correct medical care will also depend on careful assessment of symptoms and clinical examination"). You will read on this site a lot about how blood tests, for a whole host of reasons, MAY not be a true reflection of what exactly is going on.
Sorry, possibly what I am saying is not that helpful .....it feels a bit generalist. Do you have any other TFT results?
If you are offered anything it will probably be levo in the first instance. I am on levo and I am seeing an improvement now I am finally on the right dose. I am still not 100%, however, and so researching what else I can do to help myself.
I have Hashimoto with 520 antibodies since 2007 ...and Tsh ..45...i am taking Levothyroxine 118 mg but i never get normal tsh...the most normal i got is 15..i dont know what to do...
Goodness, how dreadful. I'm presuming that you feel very ill? Have you tried anything other than levo? That would seem to suggest to me that levo/your dose of levo isn't right for you. I hope that you are getting the help you need.
It's a bit hard to tell with all your dots whether your TSH levels are 45 or 0.45. Also you don't give the lab range e.g. (0.5 to 4.5) If your TSH levels are above the top of the range and you have hypothyroid symptoms then you should probably be given more medication, either more T4 (levothyroxine) or T3 (Liothyronine, which many doctors will not prescribe). Some people with Antibodies find a gluten free diet helps a lot. Many people on this forum find that although they are taking lots of Levothyroxine their body is unable to use it for some reason so their TSH stays high. This can be either because they are not absorbing the Levothyroxine (you need to take it on an empty stomach away from anything that inhibits absorption), or because they are low in vitamins or iron. Have you ever had your Vitamin B12, Vitamin D, Iron and Ferritin levels tested? These seem to be very important in helping your body use the Thyroid medication effectively. If you have any other blood test results (eg FT4, FT3) post them here (with the lab ranges) and someone will comment. Hope this helps.
You have raised a really important point here Eeng, that Levothyroxine may not be working for you because you are not absorbing it. Apparently if you have very little gastric acid that may be the case. I think that then liquid levo may be worth trying?
Remember whenever you have a blood test for Thyroid to have it done first thing in the morning, as the TSH levels are highest then so you are more likely to show up as hypothyroid and less likely to be just borderline (although 'borderline' is broader for some doctors than others). Best of Luck.
I was in that position last year, and although I think my Gp wanted to help, I believe her hands were tied by the guidelines she was working by, and wrote to the local Endo. She was as surprised as I was when I was given an appointment. I compiled a list of symptoms and felt that this was perhaps my only chance of being allowed to try medication so was determined, after advice from this forum, to give it my best shot. Like you I had been borderline for years, although only recently discovered I had antibodies also. I have to say that the Endo was of the opinion that the antibodies were irrelevant, and even when I explained that my daughter has congenital hypothyroidism and my Mother also was hypo, she wasn't convinced that medication was the way forward. I agree with MacG that you should emphasise the impact that the symptoms have on your life. I practically had a meltdown before her and she agreed to a trial of levothyroxine at a low dose. At the follow up appointment - about six months later, she conceded that it had definitely made a difference and asked if I would be happy to be discharged to the care of my GP. As I had pretty much got what I wanted, I agreed. However, I feel that after ten months, and as predicted on this forum, my dose needs to be increased. My TSH has crept up, along with the return of symptoms, and I returned to my GP, again with determination to be allowed a repeat blood test, and without hesitation, she agreed to thyroid function, ferritin, folate, and vitamin D. I stressed to the Endo on my first appointment that I just wanted to feel well and my quality of life was very poor. One of the biggest improvements I found upon medication was the lift in mood. I would never have said I was depressed, but on reflection, I believe I was. I know from reading posts on here, we are in for the long haul, but it's definitely a good start if you can at least get a trial of meds. Good luck.
I have Hashimoto's (I have no idea what my antibodies level was), my GP started me on medication before I saw my endocrinologist. It took me a while to figure out that you really do have to be on-the-ball with this disease, as I dutifully trotted along to my appointments and accepted whatever I was told, even though I presented with a list of symptoms each time (and not really addressed by the endo).
I now always take a list of my symptoms with me (with date on it), which are put into my file. I also now take along a family member with me, so that I cannot be fobbed off so easily as I was before. I always forget something to say, so they can remind me. I am more than capable of talking rationally about how I feel, but it has really helped having that support with me.
Learning about this disease has been a slow process for me, and one which I am still trying to get sorted out. The information I have gained on this site has been a life-saver, but I have only really addressed one thing at a time as I learned about it.
Thanks so much to everyone for your comments and support. your advice is so valuable and I'm grateful that you share your experiences.
I'll make sure I am fully armed with documented list of symptoms when I see the Endo. I just hope he is sympathetic. Thanks again and very best wishes to all who are suffering xx
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