Just had a frustrating visit to gp this a.m. I have a small remnant of thyroid left as a result of partial thyroid removal due to cysts 30 yrs ago. Last year I asked to be referred back to endo because of some symptoms. He initially put me on 25mcg levo per day and then at next appt upped this to 50mcg. He also noticed I had vit d deficiency and b12. I also had iron deficiency. As you can imagine I had lots of weird and wonderful symptoms, many of which could be attributed to any of these issues.
The endo put me in the care of my gp and made an appt for 12 mths. I've now had several new symptoms and had a blood test in Novemer for Sjorgens as I was experiencing a very dry mouth and eyes. My eyes have become very bloodshot and gritty feeling. I've got fed up buying intensive tears and the drops from doc did no good. So, I paid another visit to gp this a.m. I explained the eyes, told him I'd put on a stone in weight, not sleeping properly and tired all the time. He looked at my results and said they are normal!
The endocrinologist has put me on thyroxine to try and reduce the size of the thyroid remnant which, whilst maintaining a good level of thyroxine, is getting large and causing problems for me swallowing.
My gp explained the results by giving the bandings and saying the aim is to get both readings within the bands!! They have always been within the bands and he couldn't grasp what I was saying.
Here's the figs, am I missing something? I think my TSH should be lower but am not sure what level of levothyroxine is needed to reduce my current symptoms. GP said he didn't want me becoming 'hypo'
T4 band 9.0 - 19.0
TSH band 0.35 - 4.94
Date T4 TSH
11/10 16.4 3.26
8/10 13.2 4.09
4/10 12.5 4.17
1/10 13.6 3.51
6/09 9.5 4.55
I'm going to bring forward my endo appt but find this whole business so frustrating and such a waste of time. Nothing seems to have moved forward in a 30 yr period. Surely there are enough people suffering with this disease to be able to put pressure on the medical profession?
Thanks
Irene
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Irene
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Hi Irene, I'm not an expert and there are many on this site that are far more scientific than I am but I think your T4 should be at the very top of the scale so at 19 on this scale and your TSH should be down near the 0.35 . My TSH is currently 0.69 and it's the most human I have felt in a while... I have read that Endo's dealing with Thyroid Cancer recoverers aim to keep the TSH suppressed so far down that it's into the 0.00's.. I thing your absolutely right to bring forward your appointment with your Endo to as soon as possible.. I'm currently on 125mcg's of Levo as I have Hashimoto's (HypO) after suffering with Grave ( HypEr) for a couple of years and it's taken a while to get the meds up with some very frustrating visits to the GP's . Mine is lovely but painfully text book with minute rises in Levo with 8 week's in between!!.. Your weight gain and gritty eyes with the tired all the time are all sypmomatic of not enough meds.. I take my levo at night as it seem's to work better for me. Also I take selenium for the T4 T3 conversion in the morning.. I would have thought your Endo would be best port of call to see about raising your Drug levels. So good luck and keep smiling !!!... Perks
Thank you for such a postive reply Perks.. It looks like I may have to wait to June for the endo as I have a yearly thyroid ultrasound booked in 2 wks before that date and the scan result is required for my next appt.
The gp confused me as he said it wouldn't be advisable to increase the Levothyroxine on my current scores as this could make me hypo!
I'm having the same nonsense with the B12 Pernicious anaemia. My Vit D injections are cast in stone, 3 mthly or else! With all my efforts I managed to negotiate a 2 months jab last time out because I was so symptomatic. No-one looks at the whole individual. I might be within the scales set out but when I'm telling my gp that I don't feel right I think it's reasonable to expect this to be heard!
Hi Irene -hmmm I think your GP has just shown his/her complete ignorance over hypothyroidism and ironically your blood test results!!! I say ironically as this is the 'gold standard ' we all get tired of. I agree it seems you are under medicated according to both your blood test results and your symptoms -maybe you should buy your GP a book called 'the basics on identifying hypothroidism -understanding blood tests and symptoms!!!!' Or maybe the government should make GPs pay performance related to good management of common occuring diseases.......at the moment it would seem a lot would take a huge paycut and this could really help to reduce the national debt! Sorry I couldn't resist.
If my T4 was that low, I wouldn't be functioning at all.
I find incredible the inconsistency between Docs incredible. I have been exceptionally lucky and all three of the GPs I have seen at my surgery have been brill.
The first one started me on meds, despite the path lab request that I be retested in 6 weeks before starting.
Both the 2nd and 3rd have treated my symptoms (at my request) even though my TSH has been within normal range...last one 2.76.
Even if you ask to have your symptoms treated and let them know you'll reuduce the dose if you get hyper signs, they still won't increase treatment?
Thanks for your responses. I'm in a bit of a mind fog at present. I've just read 'Your thyroid by Dr Peatfield but I couldn't explain to you what it's about. I'll have another read when my brain function returns! I don't think there's room for negotiation apart from me leaving it a couple of weeks then seeking out another gp at the practice in the hope that they think differently.
My current T4, 16.4 is up on what it was. I think my focus has been on reducing the TSH as I want to reduce the amount of activity of my thyroid remnant.
By the way I've had difficulty swallowing for a while with the enlarged thyroid but at the last scan the endo said that some of the problem related to the osphageal web that I had due to my anaemia.
Typical GPs, they are general practitioners after all!
I'd ring the Endo and ask sec / Dr for advice or drop him an email. After all he is the expert. Or ring surgery and ask receptionist which GP is most clued up on Thyroid issues. After all - some will be better than others. I would say take the Dr P book in and throw it open at the right page - yet then you'll no doubt be accused of being a hypochondriac!
Update: When I phone the hospital to bring the appt forward turned out they didn't have anything earlier than the appt I already had booked for June. They offered to put me on a cancellation list which I agreed. I didn't hold out much hope. But....they rung and I now have an appt for the end of this month.. I've now got a long list of symptoms to relay as I feel pretty crap and my stomach problems have escalated. I'll update following appt.
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