Hi, I've had a horrific couple of months of non stop vomiting, weight loss, really painful muscles, heart palpitations. Been in hospital so many times due to fainting and waking up 2 days later on several occasions. I was admitted on 10th May, seriously ill but got the one Dr who understood completely s she'd been through it herself. My T4 in March was 7.8, TSH 2.28. When they ran tests again on 10th May, my T4 was 4.1, TSH 0.77!
One of the Doctors accused me of having an eating disorder as I'd lost so much weight and that my thyroid was fine apart from 'a couple of nodules' they weren't concerned about. My blood sugar is also either dangerously low, 2.2 or way too high., 8-10. I've always been told I'm not diabetic. I feel dreadful. Any advice would be gratefully appreciated. I'm Sarah, btw, and would like to introduce myself to the group
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jools_999
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I am so sorry you are having such a rough time. Can you post the ranges for your tests so those who really are good at interpreting results on this site can evaluate? Were you ever tested for antibodies?
Look forward to hearing from you and welcome to the forum!
Are you getting hyper pigmented too? All your symptoms could indicate Addison's disease (autoimmune adrenal disease). I strongly suggest you ask the doctor to investigate.
I seen this post from 3 months ago when looking at some old posts. I hope you don't mind but I just wanted to ask you a couple of questions as I have been really ill in the last 2 years and have a lot of hyperpigmentation and vitiligo on my hands and arms. I have B12 deficiency and Hashimoto's both just within the last 2 years. I feel like there is something else not right with me as I am struggling to get better. I have really weak arms and legs and just recently got a big hump at my neck like a curvature in my spine. Very fatigued and dizzy, fainted a couple of times last year. Also have a really bloated stomach and not absorbing properly. Very constipated and can't really lose weight. Lower back pain, loss of body hair, and have just lost my mojo. Last year I was taken into hospital 4 times with racing pulse and high blood pressure, which I have never had before. Also neuro problems, weakness, stumbling, unable to walk properly. High Antibodies TPO 259.
TSH 0.02
T4 10.4
T3 3.3
My PTH, just at the top of the scale 7.5, corrected calcium 2.44
I know I'm not the typical addisons, as I have not lost any weight and am very constipated but wondered if you think I could possibly have Addison's as I do have some of the symptoms like the hyperpigmentation etc... I am just trying to get to the bottom of what is going on with me.
Hi, only way to find out is to ask your GP if you can be tested. GP would probably test sodium, potassium and cortisol in the blood and depending on results should refer you to an endocrinologist for further tests such as ACTH stimulation test and for specific antibodies. Certainly a number of things you highlight could be indicative of Addison's but I'm not an endocrinologist so there might be other things going on. With Addison's, any type of stressful activity (both good and bad stress) can make you feel physically unwell quite quickly and a trauma such as a fall, fracture, having teeth pulled etc may result in vomiting, passing out, it might be worth thinking about what you were doing or experiencing before you fainted. Gastro-intestinal upset can quickly make you go down hill. In regard to your hyperpigmentation, do you see the creases/knuckles in your hands or any scars as quite dark? Are any of your toenails going brown or half brown and natural? Do you crave salty food? Your heart rate can certainly be quite high and blood pressure can also be high but blood pressure drops quickly on standing. Tiredness, lack of energy, muscle and abdominal and back pains are common in Addison's. You may feel a bit better in the mornings (cortisol is higher in morning, so if you have partially functioning adrenals that will help) but by afternoon you may feel completely wiped out and stay like that for the rest of the day. Good luck with the GP. Also check out the Addison's Disease Self Help Group website, they have really good resources, including a leaflet for GP.
Thank you for replying, I have also been visiting a naturopath and she did hair analysis and blood tests on me. She said that my salt and potassium were in my boots. She put me on adrenal cocktails, which are salt and potassium in water taken with a Thorne stress B complex and a cherry c (vit C) capsule twice daily. I have never completely passed out, or been sick. I just become exhausted for days and usually take to my bed. I actually find it hard to get up in the mornings, and have put this down to my hashi's, but once Im up I feel less tired. I do get very tired in afternoon and either want to sleep or sit for hours on the couch. I was never like this before, I used to go to keep fit, yoga, pilates, and walk daily. I will ask my G.P. to test my salt, potassium and cortisol. my pigmentation is very dark brown all up my arms and over my hands, I look like a leopard. The vitiligo is several white spots over forearm, shin and thigh area. I also look very tanned even when i haven't been in the sun. It's all so complicated when you read about the adrenals and the pituitary, there are so many conditions connected to these glands. I will let you know how I get on, just want to find out so I can minimise the damage.
Have you had any other pituitary hormones tested? Such as Follicle Stimulating Hormone, Luteinising Hormone, ACTH?
As a completely untrained person, I'd be wanting to check your pituitary function. Low, and falling, TSH against low and falling FT4 strongly suggests your pituitary is not functioning correctly.
Hello Sarah, welcome to the group. You obviously been through a terrible time but you will get some good advice on here as people are so generous with their time, knowledge and support. Others are much better informed to comment on your symptoms as a whole but l have had periods of chronic nausea, vomiting and dizziness too and am convinced it’s more than my Hashimoto, it always flares up mostly when lm under a lot of stress and don’t sleep for weeks with anxiety so l do think adrenal stress plays a part. I gave my brother a kidney 12 years and although my remain8ng kidney is working well l’ve never felt well since then. As the adrenal glands sit just on top of the kidneys lm starting wonder if some damage was done to my adrenal gland during the op. Anyway, lm sure you will get wonderful advice that relates to your symptoms and what tests you should ask for so good luck, lm sure someone will pinpoint what’s wrong so keep strong and stay positive, you’ve come to the right place, Holly
Hi Sarah, I so sympathise with you and with Holly above. I was under a very expensive and useless endocrinologist from Imperial College regarding my primary hyperparathryoidism. Then one day out of the blue my heart started racing, nausea and no sleep, weight loss and this went on for 13 weeks solid and I mean solid, I was like a walking zombie and got absolutely no advice from GP's or this useless endo. I was so desperate I took a handful of xanax and then of course was deemed as a nutjob. It was only a couple of months later when I went to see an endo surgeon in London that his sonographer picked up a lot of inflammation on my thyroid and suggested an antibodies test. My peroxidase were off the scale and the other one forgot what it's called was high too. It was Hashimotos and the 13 weeks apparently was the runner up. Endos are just interested in the TSH and if its "within the normal range" they do not bother or think to do any other tests. I also have high cortisol levels. I still suffer now from terrible anxiety which makes things seem a hundred times worse. Swallowing down xanax got me noticed but didnt do me any good as in my groggy state I tripped on the stairs and sustained a T5 compression fracture (I have severe osteoporosis) so I suffer really badly with constant pain. I'm sitting here feeling like a python is strangling me under my ribs and all the muscles seem to pull in my back causing my foot to feel weird.
Please try to calm down which I know is easy for me to say as I know from experience that anxiety is an absolute killer, metaphorically speaking of course.
It's a nightmare I know and these days impossible to find a decent GP or endo but I sincerely hope you get to the bottom of it. xx
I was also going to suggest that this might be caused by Hasimoto's.
This looks like addisons disease. there must be charity online, support specific to this who can advise. It can be serious so needs to be deablt with asap. It is disgraceful that you have not had the treatment you need.
Have you been diagnosed with a thyroid condition previously and are you taking levothyroxine or any other medication? These are not common hypothyroid symptoms so you need full and thorough investigations. Do not give up but keep insisting that doctors investigate further and rule out potential causes for symptoms. You might have several coexisting condition s that need unravelling and treating.
Notice in link 1 that there are three different types of adrenal insufficiency. Addison's Disease is primary adrenal insufficiency but there are two other types, secondary and tertiary. Doctors often test for Addison's then never do the appropriate tests for secondary or tertiary adrenal insufficiency.
If your cortisol gets close to running out you will go into Adrenal Crisis or Addisonian Crisis (same thing, different name) and that can be fatal.
Have you ever had children and during childbirth lost larger than normal amounts of blood? If so you could have Sheehan's Syndrome, see link 4 above. Problems don't always arise immediately with Sheehan's, it could take months or even years.
Obviously your problem could be something completely unrelated to adrenals. I'm not a doctor and I've had no medical training of any kind.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Thyroid nodules can produce thyroid hormones regardless of TSH.
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised due to Graves' disease or Hashimoto's
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
if taking Levothyroxine......Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Medichecks currently have an offer on until end of May - 20% off
Sarah, I hope your'e not feeling quite so desperate this morning. I was thinking about the cortisol testing and the time it might take to get your GP to even agree to referring you to an endo etc. for such a test. If you can afford the £79, would it be worth do a saliva test just to rule out any cortisol problems and that would be one less worry off your mind. Thriva do one and they are extremely quick, take a couple of days to get back to you with a doctor's comments. I have had Medichecks both blood and saliva in the past but I believe there was some controversy with the latter, I also used Regenerus who take their time. I had a Thriva one done a month or so ago thriva.co/tests/stress-cort....
I noticed on facebook yesterday they were offering £25 off for first order but this could be a con and only applies to baseline blood tests. As I recall I told my daughter about this and she didnt get anything off but I complained and they gave me a code IMMUNE15 to get £15 discount.
You could enquire by email to them (strange email I know)
Thank you. I’m actually with a private endo now as the NHS have been so rubbish for past 20 years! He’s leaving no stone unturned so will hopefully get some answers soon😊
Sounds like you need t3 as well as t4, your pituitary doesn't seem to be functioning properly, it happened to me too, I was also starting the menopause that I didn't know until last year x
Hi! Can you pls post the tests and results (with reference range) that you had done while in the hospital. Have you seen GI to investigate where the vomiting is coming from. When you vomit, you lose potassium (K), and that’s probably causing your palpitations. There are so many reasons that can cause vomiting... Do you also have any other GI symptoms, like diarrhea, abdominal pain? Could be gastroenteritis... Do you have headaches, did you had a head MRI done?
Pls post ALL the information so we have better idea what is happening with you.
Can you get your GP to do an early morning blood cortisol to see what your cortisol levels are? The symptoms that you are describing are very close to adrenal insufficiency either Addisons(primary) or secondary where the pituitary gland is affected. Do you have any dark patches on your skin, it looks like you have been in the sun. Sadly many doctors including Enod's don't understand adrenal or pituitary issues, so it is often missed. The fact that you have lost consciousness is very concerning; adrenal insufficiency is a life threatening condition & it sounds like you have been in "crisis" a few times but hasn't been picked up by the medics. Have a look at the Addison's website for more information, if you end up in A&E please tell them you might be in adrenal crisis. addisonsdisease.org.uk/
We need ranges to understand. There is a change you are severely undermedicated if ranges are 9-19 or 12-22 on ft4...your tsh is even weirder.are you on any meds?
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