Hi everyone,had my endo appointment on wednesday.Nice doctor,not rude or offensive,went through my symtoms,some new(painful and sore right eyeball,swelling at right side of nose and under eye,muggy throbbing at back of eyes and nose,headaches now too,carpal tunnel in both arms)some old ones have returned(palpitations and sweats,joint pain ,breathlessness)I also mentioned that my neice has the prolactonema version and that I have a cousin who has addison's(shrug)then he said to me I had had an ifg-1 test when I had the dexa scan and the result was 'negligble' and that in his opinion I do not have acromegaly,sat there in front of him I look too healthy,if I had had it for the last five years I would look dreadful.I replied that not everyone presents with the enlarged extremities and he said every one with acromegaly does actually!He then said he wanted me on insulin and I said not until you can give me a cause for my high blood sugar and he just shrugged again.I then asked for an mri and he said no point as you do not have acromegaly.I managed to get another blood test for igf-1 ,that was as much as I was going to get from him.Thanks to mcrose kindly sharing her dad's story (hope he is recovering)I am am finally determined to get to the bottom of this and am off to see my gp next week and see if she will refer me for an mri instead and if she can't then a second opinion,I'm not hanging around until I look like jaws the bond villain to be taken seriously !!
acromegaly update-the great fob off c... - Pernicious Anaemi...
acromegaly update-the great fob off continues
Oh dear. I agree you need more investigations. Hope your Gp. Will help you . Sorry everything we struggle
thank you nackapan,I have been following your story and know how you have struggled too,like many here,sharing our experiences helps enormously x
I've just found yours. There were confusions with hyper and hypos ! Did you manage to stay off insulin?
Are your b12 injections still working for you?
A long time not to be diagnosed
not tried insulin,wanted to find out cause first,no-one can give me answers,I am self injecting b12 every other day at moment,I find its helping(started last year at once a week)and yes ,still get symptoms of low blood sugar(why I am worried about insulin)
Glad the b12 is helping you.
I di not understand giving insulin that lowers blood sugar if yourso is low?? Long chain carbs help stop the swings
Keep testing it though .and push for more investigations. Also get your bloods done for the average over a few months. It's so important to get them stable.
My huaband is insulin dependent . He started insulin as his blood sugar was 30!! So we have learnt a lot.
My blood sugars can drop quite quickly ....always have. Have been tested many times for diabetes. Never passed out just get very irritable vision goes and shake. Then food and okay again. On long shifts ar work was known for my snacking. Thats what i thought was happening right at the start when I did collapse and got virtigo.
I learn to manage it by eating little and often and the right mix of carbs. So you don't see saw .
B12 injections give me the need for more food. I'm convinced for me speeded uo my metabolism I'm still lighter after a year than at start despite being bedridden /housebound ect and eating alot.
Hope you get more answers soon.
my last hb1ac was 13.9 in august,not as high as your hubbys!my low sugar symptoms are like yours though i've not had any of the usual symptoms of diabetes like weight loss,going to toilet a lot etc,its really weird,no sugar in my urine either,I've been trying to tell nurses at my surgery for the last 18 months that its not normal diabetes but they don't want to know!never mind,we will keep going,good luck to you too x
Yes keep going. As hb2ac of 13.9 whaever the reason will be adding to your symptoms.
A specialist should help you address this. You are obviously Having hypos and hypers to have that reading. As it's the pancreas job surly you should get a 24 hr monitor to see what your blood sugars are doing and writes everything down you eat and the times. A blood sugar before eating. One after. (Which will be high) Then 2 hours after. Thars when your blood sugar should be in normal range. A blood sugar of 13-15 makes my husband feel sluggish, headachy /grubuy and ' not in' generally unwell. And csnt get moving . Can cause thrush infections and affect your organs.
Your reading as far as the nurses are concerned is a diagnosis of diabetes.
Have you had help with monitoring and diet?
It is also more common to have a b12 defiency if you have diabetes
I really hope you see the right specialist to get to the bottom of it .
T C
all nurses and docs want to do is stuff me full of medication,no interest in cause, had to get my own glucose meter,tried metformin,no effect,tried diet,no effect,I also used to get regular thrush from aged 14 to 50(had many swabs over the years-always came back negative!)I came across natural progesterone aged 50 and have not had it since(thank goodness)My lovely gp who I am seeing next week will listen to me at least,thank you for your support nackapan x
Late to the game here, did you ever get to the bottom of this, I do hope so. I have just done a post on Acromegaly,
Hi Polo22,I tested negative for acromegaly and to date still haven't an answer for my extra large bones,I intend to keep asking though and if I ever get an answer I will update🙄
You have my sympathies flosslechops. Trying to get a diagnosis can sometimes be very difficult if you are not presenting with 'classic' symptoms for anything but parts of several conditions. This happened to me from 56 to 62. My main problem was running out of breath after a couple of words. Asthma inhalers helped so I must be asthmatic, ignoring that I could blow the needle to the end of the tube of the lung volume test device. TNT sublingual sprays helped and I didn't get headaches after using them so I must have a cardiac problem; I ran the treadmill for 9 minutes. On bad days I could do nothing, on good ones I could walk for miles.
I had a voice problem, so let's try an ENT consultant. He said he could see I had a problem but couldn't see a cause , he had no idea what was wrong and couldn't be bother to try to find out.
Eventually after being given a personal voice coach to try to solve my problem she knew there was nothing she could do but knew someone who would relish finding out. She referred me to a man who is probably the finest gastroenterologist in the world. He gave me a thorough examination, ordered all manner of tests, then involved a close colleague chest specialist and MRI. The chest man used the scan results to show me what was happening and to tell the professor what was needed.
Just after my 65th birthday I has a Fundoplication which made the sphincter at the bottom of my esophagous seal properly and stop stomach gasses escaping up and trying to suffocate me.
I liken doctors to railway lines, they always think along them. Tunnel vision. Railway lines radiate out of a city so if you need to go round the city the railway is no use, you have to use your own two legs to do that. I was on the voice problem line, the voice therapist recognised the gastroenterologist line had something to do with it and the thin controller of that line knew he needed the chest line man to find a solution. Then it needed the laporascopic surgeon with his skills to repair the faulty part.
Persevere, there will be a solution for you and it will not be where you think it is. In the meantime go and ask Doctor Google as the more you know about what is going on the better you can argue with these blinkered railway drivers.
Best wishes for your search, there will be someone who will say 'I know what is causing your problem' and that really is a great day. You have be the driver though.
thanks kcbrecks ,that's a great way of putting it,I'm not the only one going through it I know and it helps so much to hear other people's experiences and your'e right,i've been so dopey over the years and not pushed for answers but b12 has lifted the brain fog and I finally am able to get in that driving seat!
Is your thyroid up to speed and behaving well ?
my serum tsh level last year was 1.3(range 0.40-5.50mu/L)so I think so,I have just started taking tyrosine and b3 and its helping with joint pain and I'm not sweating as much,I have read it can help thyroid too ,but then other comments say not ,so I don't know!but its working for now
The thyroid is a complex issue and as you have only had the TSH tested it is difficult to know the full story. Thyroid Stimulating Hormone is a Pituitary hormone and tells you very little about how the thyroid is performing. You also need the FT4 & FT3 testing along with Thyroid anti-bodies TPO & Tg to rule out Hashimotos. I have Hashi's and was not diagnosed until I was 59 - now 73. I have a B12 issue due to surgery ...
I have wondered from time to time over the years if my symptoms have been thyroid,never tested positive for any antibodies though hubby has been diagnosed with hashi's this year(we're both 55)my b12 issue is non-absorption.I will ask my gp about a full thyroid test though next week ,thank you for the information,I didn't know thyroid was from pituitary,thought they were separate!and tsh stood for thyroid serum hormone(I'm a bit dim sometimes!!)
The NHS rarely do all the tests I mentioned above so the diagnosis is often missed !
The link I posted for you above is the website for Thyroid UK - which is another Forum here on HU. Everything you need to know about Thyroid and will explain how the Thyroid works.
TSH - Thyroid Stimulating Hormone - is secreted by the Pituitary Gland and tells the Thyroid to produce T4 which is a storage hormone. T4 needs to convert into the ACTIVE thyroid hormone T3 - needed in every cell of the body - brain cells - gut cells - heart cells and so on. Low T3 can be the cause of so many symptoms.
If your B12 is due to absorption issues then have Folate - Ferritin and VitD been tested ?
If your GP does not do all the tests then Private Testing is available on the link I posted. Click onto About Testing ... Home Testing Kits - results by e-mail. Used by 100's on Thyroid UK.
My hubby has Hashimotos too !
thank you marz,it was low folate that led me to b12d,I took a high dose supplement with folate for 3 months ,then another blood test ,b12 had hardly risen while folate was ok,vitd was>250 nmol/L last year,I was taking it to try to get rid of joint pains.ferritin was 76 ugl.Can't believe your hubby has hashi's too,I will look at thyroiduk,i'm sure it will be of help to him as well and your'e right,the nhs won't do the tests but it all turns out to be false economy as people end up needing more treatment than they would have in the first place!
So true ..
Follow up re husbands B12 level 229
Little Update
Progress at last
Very high B12 folate 
