Hi, I’m not sure if I’m in the right forum but I have a 4cm mass on my adrenal gland. My endocrinologist isn’t doing anything about it and I have no idea what it means. I also have diabetes type 2, coronary artery disease (stent & angioplasty) and I have non alcoholic fatty liver disease. Then I have fibromyalgia too. I feel awful all the time, tired, sore and I am worried sick about it all. GP just makes referrals she can’t answer any questions. The endocrinologist did pee samples over 2 days and I had a tablet to take, I had some bloods done but after that I was told nothing except they’ll see me at some point months away . Dr Google isn’t helpful either Some websites say it’s all connected but I can’t make head nor tail of it all x anyone any ideas on what to do or what to say to find out what’s going on? Thanks in advance x
Adrenal gland mass and a whole lot of other stu... - Thyroid UK
Adrenal gland mass and a whole lot of other stuff (falling to bits)
Fibromyalgia is frequently undiagnosed thyroid
Adrenals and thyroid often linked
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally before 9am
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
If paying for private testing as you have suspected adrenal issue …..worth paying extra for
Blue Horizon Thyroid Premium Gold as includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
I have some endocrine results but not much else. I take vitamin D daily, bisoprolol, metformin, empaglaflozin, I’ve had my atorvastin doubled to 80mgs, cocodamol and tramadol . I’ll try to upload my bloods if I can find them.
Thyroid is diagnosed almost exclusively by high TSH
Hypothyroidism is usually diagnosed by high TSH
Metaformin lowers TSH
cureus.com/articles/50564-e...
Metformin has the effect of significantly lowering TSH levels in hypothyroid individuals. However, no such effect was observed in euthyroid patients.
Therefore ESSENTIAL to test TSH, Ft4, Ft3 and thyroid antibodies
High cholesterol is strongly linked to being hypothyroid
nhs.uk/conditions/statins/c...
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
How much vitamin D are you currently taking
When was vitamin D last tested
High HBa1c often improves when hypothyroidism is treated
thyroid.org/patient-thyroid...
This study suggests that hypothyroidism may be falsely increasing the levels of the HBA1C test. While thyroid hormone therapy decreases the HBA1C test results, suggesting an improvement of blood sugar control, actual measurements of fasting blood sugars and overall glucose tolerance were unchanged on thyroid hormone therapy. This may lead to errors in diagnosing pre diabetes and diabetes in patients with hypothyroidism. This is important for both physicians and patients to know.
Hi again SlowDragon, Is thyroid connected to the adrenal gland. I’ll do a test if you think it would help. I found a letter from endocrine saying my cortisol hadn’t suppressed as much as it should and they’d follow it up, they did and it was the same result but it looks like they’re just going to wait till something happens. I keep getting kidney pain and my liver presses on my tummy. 2 nights ago the pain was so bad my daughter phoned and ambulance as she thought I was having a heart attack. I was sick twice after having my gtn spray and thought I was a goner. I was released from hospital 8 hours later and although my bp was raised they don’t know what was going on.
Yes……..Being hypothyroid puts a lot of stress on adrenal glands. Adrenals try to compensate for lack of thyroid hormones
Can initially cause raised cortisol, and can over time lead to adrenal exhaustion/insufficiency
Just been reading that tramadol can affect adrenals too
How long have you been on tramadol
hindawi.com/journals/jt/201...
Finally, it is concluded that chronic use of tramadol can cause many hazardous effects on different body organs. And, from this current study, it is approved that chronic use of tramadol caused adrenal insufficiency both histologically and biochemically and stoppage of tramadol use leads to a decrease in its hazardous effects not only on adrenal glands but also on different body organs.
I’ve been on trazadone for about 6 months I’m on 1 x 100mg per night. Tramadol is only occasional if my back goes (sorry I get those 2 mixed up) I don’t know if my doc knows about the tramadol but I’ll tell her and I won’t take it again . I’ll order a thyroid test x hopefully it’ll give me some more info on what’s going on with me x
Make sure to test early Monday or Tuesday morning
Tips on how to do DIY finger prick test
healthunlocked.com/thyroidu...
Ok will do, I’ll get on and order the test and let you know x thanks
Adrenal masses (adenomas) are usually benign but they can produce hormones, especially cortisol and aldosterone, so you need various tests do discover this.
Non suppressed cortisol could be Cushing's syndrome, but you need more tests do reach a diagnosis. It is a long process. Cushing's can cause very serious health issues affecting various organs, but wait for a formal diagnosis before worrying about it. Your test results must haven't be bad enough to require urgent further investigations, but if the endocrinologist doesn't contact you in the next 2-3 weeks, you should contact them. If you don't have the contact number you can often find the medical secretaries contact details on the hospital website.
If the hospital you are using is a small local hospital, perhaps you should consider asking to be referred to a larger hospital. Adrenal conditions aren't very common and regular endocrinologists do not have that much experience treating them. Did you have any tests when your adrenal problem was discovered in 2017? They should have done the tests right then, not waiting 5 years. Especially with your complex medical history.
The link between high cortisol and thyroid is not what you are see normally around. High cortisol can cause secondary hypothyroidism, which is unrelated to and has different characteristics than the much more common primary hypothyroidism.
Extremely clear advice - I will save this in case I ever have / need to know about adrenal problems
Hiya, I’ve looked up some stuff about Cushing etc. I have vitiligo but mostly it’s my pigment disappearing but I don’t have most of the other things like buffalo hump, purple lines although my flamin face seems to be getting hairier. I’ll be pushing the doc for the correct bloods x thanks for replying x
Vitiligo is autoimmune…this suggests your thyroid disease is also likely to be autoimmune
Increased facial hair and high cortisol suggests PCOS
nhs.uk/conditions/polycysti...
nih.gov/news-events/some-wo...
theforkclinic.com/post/pcos...
PCoS and Hashimoto’s (autoimmune thyroid disease) often linked
endocrineweb.com/news/thyro...
verywellhealth.com/things-w...
What do I say to my GP? I had a terrible time every month with period, sometimes floored with pain feeling like I was giving birth again with abdominal & back pain, doc’s did nothing. Last major period incident with gliding was 2014, last trickle 2017 but 2017 was when I got the ct scan that picked up the adrenal mass measuring 3.5cm, they didn’t tell me. Then I had an appointment for a gastric consult for pain and he felt the NAFL and looked at my notes questioning why endo hadn’t seen me and that’s how I found out what about the mass. It’s now 4cm, my cortisol had suppressed but not enough and certainly not enough for them to do anything. Cardio is happier with me, I’m stable since they put my statin up from 40mg to 80mg.
Ask GP to test full iron panel test for anaemia, folate, ferritin and B12
If GP unhelpful
Alternatively retest using Medichecks
Print out the info that Metaformin lowers TSH
Give to GP
Show them how low your Ft4 result is
Ask for “6 months trial” on levothyroxine
On levothyroxine
You should see cholesterol levels drop
HBa1c levels drop
Symptoms improve
Ok, I’ll do that x I’ll call the gp for a face to face appointment tomorrow x I think cardio was going to ask the gp to write to cardio again so between that and being generally unwell anyway I should get an appointment x thanks x
GP unlikely to be aware that metaformin lowers TSH
If GP wants to know where you got info from….never say an Internet forum ….red rag to a bull!
This forum is run by Thyroid U.K., the thyroid patient support group recommended by NHS
See right at bottom of page
nhs.uk/medicines/levothyrox...
I’ll need to wait till next month to get more private bloods done, that Superdrug test was £79
Yes….pity
I gave you links for Medichecks and Blue horizon tests in your previous post
Well I’ve learned my lesson, I just thought going to my nearest Superdrug would be ok and someone would be able to take bloods for me. I wanted to ask, should I stop taking my diabetic meds before the next test?
Test early Monday or Tuesday morning, ideally before 9am. Ideally…..Only drink water between waking and blood test …but being diabetic important not to get low blood sugar
Definitely don’t stop diabetic medications
It takes several weeks/months to change TSH
Sandybbfan,
Welcome to our forum,
Presumably you’ve had an adrenal scan to confirm the mass, and lots of labs, ie sugar, electrolytes, albumin, kidneys, BP, liver, etc .. but have you had thyroid hormone levels tested also?
The main adrenal issue on this forum is insufficiency that sometimes boarders Addisons but at the other extreme Cushings, which can also cause mass in the pituitary. Also hyper-aldosteronism when too much aldosterone is made whilst many of us hypos have too little.
SD has already given reams of details regarding the testing of thyroid function. Remember to give ranges (numbers in brackets) for members to offer comments.
Hiya Radd, the mass was detected in 2017, it was documented but nothing was said about it and at the time it was 3.5 cm, I was sent to see a specialist as my doc suspected a problem with my liver in 2019 and that consultant mentioned the adrenal gland mass and sent me to endocrine, that all took forever as covid hit so I didn’t get to see anyone till 2020 I had an mri and they saw the mass had grown, they said about the NAFL and that I had further calcification of the heart. Endocrine have done 2 overnight suppressions both not suppressing enough but they’re not going to do anything about it. Cardiology put up my statin from 40 to 80mg a day and the bisoprolol to 3.75 per day.
“Presumably you’ve had an adrenal scan to confirm the mass, and lots of labs, ie sugar, electrolytes, albumin, kidneys, BP, liver, etc .. but have you had thyroid hormone levels tested also?”
I have only had the scan and get my diabetes checked and the last check I was 6.4 so I think that’s under control
Sandybbfan,
It would be helpful for you to see your test results. You will most likely have had some thyroid function testing with an adrenal mass. Do you have on-line access?
If not you can ask your surgery to organise this for you to view on your mobile phone/lap top, or ask the receptionist to print them out. People with adrenals tumours usually have very high levels of certain hormones and depending upon which hormones are high will dictate symptoms.
Most are benign but a tumour over 4cm should be monitored. Diabetes can be a result of an adrenal tumour.
What check was 6.4 ?
The diabetic finger prick test
Oh, ok. I thought that might have been your TSH 🤪
lol, I’m reading all the replies and can’t make head nor tail of any of the blood results etc, I’ll need to start learning as for all I know just now we could be talking shoe sizes 😂
That’s the first thing you need to learn, that way your GP can’t fob you off. In the end you’ll know more than him/her 😀
Hi Sandybbfan, Your problem is probably not this but there are not many doctors that know much about it.
Very, very rare but pheochromocytoma - ausually a benign tumour ( hope that's spelt correctly) are a condition that can affect the Adrenal glands but the the urine test you had should have found this if you had one.
There is also a lying down blood test that is done which can also pinpoint this.
The condition would usually cause severe symptoms.
These can be sporadic or part of a condition called MEN2a check out the AMEND support website for more information.
Wishing you all the best
Hi. I have nothing medical I can help with as I'm learning myself, but just to wish you every success and the people on this forum are very knowledgeable and helpful.
Do get a full suite of tests if you can afford it. TSH, ft3, ft4 is the absolute minimum.
Thanks Decant x with everyone’s help on here I’m learning things and I now know what to ask for x
I would change your doctor is'nt there another dr who could help sounds like you need help & fast.I have Congenital Hypothyroidism ,type 2 diabetes.my Endocrinologist was fantastic.I did'nt need to see him very often as I got older .my dr dealt with my blood tests.but he was there when I needed to see him.I hope you get the help you urgently need.good luck Julie Harman.
I’ll talk to the gp, she’s actually ok just not expert on anything. I’ll ask for bloods to be done using the info I’ve been given here x
What you are describing sounds eerily the same as my journey that went undiagnosed for 7 years. In 2015, I got jaundiced. Hepatic Steatosis non alcohol liver disease. My labs pointed to the issue, but nothing was said or done about it. I was having bad kidney pains at the time, like every month. My cholesterol was very high, felt like death. I went doctor hopping, had more tests ran. 1 thing kept popping up, but was over looked. My TSH labs. I found a doctor this year that noticed my past blood work and ordered a thyroid blood test again and he confirmed my issue or at least the main issue. Overt Hypothyroidism. My serum cortisol level was at the highest range of normal. My kidney function was severely impacted. I was placed on blood pressure meds and statins in 2015 that didn't help. I stopped taking them against my doctors wishes. My new doctor recently started me on Levothyroxine for my hypothyroidism. I am seeing progress in my symptoms, slowly, but still. If I were you, I would demand a TSH, T4, T3, Serum Cortisol test.
Hiya, wow, you’ve been through the mill x I hope your feeling better now you know what’s going on. I’m going to ask the doc for the tests before going private, my gp is actually quite good at doing stuff for me like DWP and housing letters, I can talk to her. Sometimes it just seems like she’s not clued up on things and I suppose she can’t be an expert on everything. I’ll call the surgery on Monday and ask for a phone appointment. Hopefully she will order the tests or at least be able to give me the proper results of anything I’ve had done. By Monday she will also know about my trip to a&e too x
Yes, it has been one long battle. I am curious if you will be diagnosed with thyroidism and finding out that ALL of your issues are thyroid related that could've been prevented or slowed way down.
I think it’s all connected, I was fine right up till 2014 then everything started to happen, started feeling awful in July and by October I had the heart attack etc… I just keep getting more stuff wrong with me. I don’t know if I’ll ever get to the bottom of it all or if they’ll find a solution but I’m better informed now everyone’s helped on here x il let you all know how the call to the doc goes x take care of yourself x
I'm in the U.S. One would think we have the best medical professionals, but that is wrong. I have gained more helpful info from this site than I have from my ignorant doctors. Ironically, I started searching for an old doctor with a lot of experience. I found an 80 year old with 50+ years of experience. I had demanded specific tests over the years, but my doctors blew me off. I had screenshot some of what these folks have said and read these to my new doctor who agreed 100%. I handed him my printed out labs through the years and he said well yeah, I can clearly see the issue. This site has been a Godsend for me and I hope you too will get the answers and proper diagnosis. I've had a ton of symptoms over the last 7 years, but those doctors wanted to treat each symptom instead of looking for the actual cause. I had very high blood pressure, very low blood pressure, rapid drops in my kidney function, tachycardia, brachycardia, night sweats, rapid weight loss, loss of vision, extreme fatigue to the point that I had to quit my job. I am seeing some improvements after 8 weeks of being on Levo. Urine flow is strong again. Urine color is much better. Blood pressure is better, but not in its prime yet. I was hitting 200+ sys over 150+ diag prior to Levo. Now it never goes over 140/85. Hang in there and doctor hop if needed.
I’ve just booked an advanced thyroid blood test at Superdrug near me for £79, I’ve to go on 11th July and they’ll take bloods and then hopefully I’ll find out what’s going on. I’m still not feeling 100% since my trip to hospital so I hope this test gives me a better idea of what’s going on with me
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