I had Graves' disease just after I turned 22 and had RAI treatment nearly a year and a half after diagnosis. I have been on levothyroxine for 15-16 years before an endo consultant put me on T4/T3 trial last year March.
I managed to get a copy of my latest blood test results yesterday to bring with me when I go to my appointment at the hospital tomorrow. The head endo consultant whom I've had two previous appointments requested FBC, U&E (urea & electrolytes), LBP, random glucose (which turned out to be plasma glucose test was done), Vit D3, TSH, fT3 (which was not done), fT4, tTG, and HbA1c.
My TSH is still below range 0.05 miu/L [0.34 - 5.6] (same result from my previous blood test back in March). I mentioned this to the head endo consultant, but he said he is okay with that result.
Plasma glucose is 5.1 mmol/L [3.0 - 12.0]
Vitamin D3 - above range (which means I need to lower my D3 dose from 10,000 iu to 5,000 iu); my vitamin D3 levels since 2014 were way below range and it took about a year and a half to bring them back up.
Serum free T4 - 12.3 pmol/L [7.5 - 21.1]
HbA1c - 42 mmol/mol [26.0 - 41.0] My local GP surgery has now classed me as at risk of developing diabetes.
Serum total protein level (from liver bone profile) - 82 g/L [60.0 - 80.0]
Tissue transglutaminase IgA level is negative, but my IgA level is above range 4.23 g/L [0.3 - 3.0]
My free T3 level was above range 5.59 pmol/L [3.0 - 5.0] from this past March, but head endo consultant did not say anything about it.
Ferritin level was 45 ng/mL [10.0 - 180.0], also from March blood test.
I have requested to be tested for thyroid antibodies twice, but the head endo consultant refused both times. The first time, he told me straight out that I did not have thyroid antibodies since the RAI got rid of them (???). The second time I saw him, my proptosis seemed to have come back and when I asked to be tested for thyroid antibodies, he said that it was obvious, and I quote, "they are all over inside that's why your eyes have bulged out more," and promptly referred me to the ophthalmology consultant, who then didn't find anything wrong with my "thyroidy eyes".
I am at my wits' end because it took me 15 years before I was referred to the hospital, and my mentioning about NDT that one of the endo consultants finally placed me on combined T4/T3 treatment (which helped a lot, for a short period of time). I have had the short synacthen test twice (to measure blood cortisol) and yet I still struggle to get out of bed. My joints hurt all over, that even walking a mile or two the previous day would leave me the following day like I have been beaten up. Getting fed up of being judged by doctors. I tried to tell them what was going on, yet they turned a blind eye and one of them even called me a hypochondriac. I feel like they're just waiting for me to develop more health problems so they can keep handing out even more medication. Now things have started to get out of hand and I feel like I have nowhere or no one to turn to.
Thank you for taking the time to read this. Any advice greatly appreciated.
Written by
meowminx
To view profiles and participate in discussions please or .
Well, it certainly doesn't matter if your TSH is low, nor if your FT3 is a bit over-range - you probably need it high after having Graves - and your TSH might never rise, now, it doesn't matter.
But, your iron is low. Did they not tell you to supplement that?
You also need a B12 test, because that could be low, too. And low B12 can cause a lot of symptoms.
No, they didn't tell me to supplement for iron, but I do take Feroglobin. I used to take ferrous fumarate, but it gave me tummy trouble. I will ask for it again tomorrow.
The last time my B12 level was checked was back in December 2014, and the result was 510 ng/L [110.0 - 914.0]. I started taking methyl B-12 (methylcobalamin) 1000 mg three months ago. I will request for this as well.
No point in testing B12 if you're supplementing. You need to be off B12 for four months to get a true reading. Best to just continue with the 1000 methylcobalamin daily. But, you should be taking a B complex with it, because the Bs all work together, and need to be kept balanced.
If you can't face battle with medics to check B12 - they can do that too
You might benefit from trying gluten free diet - the book by Sysan Blum - "the immune system recovery plan" suggests that both graves and Hashimoto's (and all autoimmune patients) should at least try gluten free, to see if it helps.
Blue Horizon - Thyroid plus eleven tests all these.
This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.
Usual advice on this test, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) don't take Levo in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible.
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 importance of good levels of B12, folate, ferritin and vitamin D and gluten free diet too.
Thanks for the book recommendation and for the links. I have stopped eating any bread/pasta and have been going gf for about six months.
I am saving up to have thyroid tests done privately, but for now I have to go with what I have to request for the endo to request. I schedule for my blood tests at 8.30 am every time and I don't take my thyroid meds the day before my blood tests.
I will definitely bring a list of tests to requests as the last time I got tested for B12 and folate was back in December 2014 (serum B12 was 510 ng/L [110.0 - 914.0] and serum folate was 14.0 ug/L [3.1 - 19.9]. I am supplementing with methyl B12 and also methyl folate. Vitamin D3 is now above range, so will need to get back to taking 5000 iu instead of 10,000.
Did anyone say anything about fatty liver or too much fat in the pancreas? That's the latest 'thing'. Pancreatic fat. People on the verge of becoming type 2 diabetic have to lose that fat to avoid getting diabetes.
Did you leave 12 hours between taking your T3 and having blood taken? And 24 hours for the T4?
I had an abdominal scan done last year and it showed that I have a fatty liver. My alanine aminotransferase was above range 65 iu/L [5.0 - 45.0] for a year or so, but my latest blood test results show that it is now 33 iu/L. The GP whom I saw about this did not believe me when I said that I don't drink anything alcoholic. I then got told by someone else from another clinic that I may have non-alcoholic fatty liver disease.
I don't take my thyroid meds the day before having my blood tests. Say, I have a blood test scheduled on a Monday, I skip a dose on both T3 and T4 on the Sunday before.
It is possible that that T3 dose is a bit high then. At 24 hours it shouldn't be over range. If you read TiredThyroid's blog site you'll see that if someone is on a T3 dose that exceeds their need, they can become diabetic.
I was having the same issues when the T3 dose was 12.5 mcg and above (I was taking 3/4 of a 25 mcg pill per day for several months, so 18.75 mcg per day, and my blood glucose was all over the place. At 6.25 mcg I didn't see huge spikes but decided to go only on 150 mcg T4 because this way I can lose weight and not have glucose levels pinging around.
You didn't say what the T4/T3 dose is that you are taking, but since the fT4 is quite low in range, maybe it would be possible to increase the T4 and decrease the T3 and study the effect on your blood glucose responses.
My HbA1c (different units here in Canada) was 0.052 before T3 and went up to 0.058 while on T3. Anything past 0.060 is prediabetic and the lab flagged my results since they were increasing so rapidly. Even my 6 hour post prandial glucose was around 5.8 which is ridiculous considering prior to and now it's around 4.7.
I know everyone is different but with T3 I was gaining weight because it increased the rate at which food was absorbed. The first 6 months I didn't check my glucose at home but afterwards when I did, I was shocked. So it might be worth your while to use a glucosemeter and see what is going on.
I think the most usual cause of a fatty liver is sugar (esp fructose) - (remember that all starches become sugar when digested). Sugar raises your triglycerides (I think) and the rot sets in. One of Dr Malcolm Kendrick's blog posts goes into detail about the metabolic pathways for sugars and fats and shows how easy it is for sugar to tune into triglycerides and how hard it is fats to do so.
Not even pickles they're my favourite, too. I cook with soy sauce, too, so that will have to go as well... Fortunately I haven't drank beer since year 2000 (or anything alcoholic), so I'm safe there.
My eldest daughter has become vegan and very happy when I told her that I will have to go 100% gf.
Thank you very much for all your advice. Very much appreciated.
You can get gluten free soy sauce, and ketchup and some pickles are ok .....if made with spirit vinegar rather than malt - need to check the labels carefully. Usually barley, wheat and rye will be highlighted bold in ingredient lists.
Coeliac society have huge electronic database of foods that are ok - costs £24 a year to join. Plus you get magazine and support.
I was delighted to find my favourite Sainsbury's BBQ ribs they sell on the hot counter are GF - staff very helpful and have folder showing detailed ingredients of all their hot foods 😃
You just need to read the labels. Heinz Ketchup (at least in Canada) contains no gluten. Even with pickles (however you define the type you eat) just read the label.
Thank you all for your replies I will reply to them tomorrow as it is getting late.
I just want to mention that my appointment last Wednesday with a different endo consultant was a disaster, so much so that I ended up going to the hospital's patient advice and liaison service right after I got out of the consultant's office. My husband is planning to write a formal complaint, too.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
they're my favourite, too. I cook with soy sauce, too, so that will have to go as well... Fortunately I haven't drank beer since year 2000 (or anything alcoholic), so I'm safe there.
I will reply to them tomorrow as it is getting late. 
Being referred to an endo - what should i expect at the consultation?
Current results need help on understanding results ASAP as seeing endo in morning. 
Advice needed on blood results for when I see consultant please
Hi all I'm New here need help still feel sick 
What will the Endo say?
