Hi everyone, this is my 1st post for which I will apologise for in advance….it’s going to be a long one.
Everything started for me in December with severe pain in my right side and under my right rib cage. After several visits to A&E the pain was being looked at as gallbladder issues, however after numerous tests, CT scan, EUS etc nothing has ever been found to explain my right flank pain.
Since December my pain has gone into my right shoulder blade or in the middle of my back and pain killers don’t really take the pain away completely. My hips and pelvis ache constantly and my knees and ankles make a crunching sound when I climb stairs or squat.
I’ve began having severe anxiety, heart palpitations and a constant feeling of dizziness like I’m going to pass out. I feel completely exhausted and have difficulty falling asleep and staying asleep and wake up every night in the early hours with my heart pounding in my chest with a feeling of utter panic. I feel really tired and worn out all the time and feel like I’ve no energy, generally feeling rubbish.
I’ve lost 2.5 stone since December but my tummy feels massive and bloated and it seems to be getting bigger. I’ve had a massive increase in facial hair and would grow a full beard if I allowed it to grow, extra hair below belly button, base of back and thighs, the hair is dark, thick and wiry and not merely fluff. My hair on my head has become very thin and the hairbrush is full every time I brush and it literally comes out if I touch my hair. I’m constantly freezing cold with hands and feet and tip of nose like ice and find it impossible to feel warm.
I’ve pestered my GP for blood tests and have had to push them for answers which has been a real struggle and to be honest I feel completely fobbed off most of the time. My GP seems to think I’m entering the peri menopause stage as I am 45 now and it is to be expected. Here are some bloods I have had done since May:
TSH 1.9 mu/l (09/3), 0.94 mu/l (11/8) range 0.35-4.7. GP would only test TSH, he said that was all was needed. I wish I knew then that this was rubbish.
FT4 12 pmol/l (11/8) range 7.8-21. (This was only tested by endo in August).
My vitamin d, folate and vitamin b12 are all at the bottom of the range but GP obviously said that they are all fine but I am self treating with supplements following protocols and I am due for retesting to see if the levels are increasing. My ferritin was raised and I don’t eat a lot of iron rich foods but I know that it is an inflammatory marker.
My GP referred me to an endocrinologist who requested me to do a 24 hour cortisol urine test which I did, but it got lost😡 he requested I repeat the test which I did and I got the results today: Urine free cortisol level 163 nmol/d , range 0-165.
I had to chase my results and spoke with the ‘lead’ GP at my surgery who said my test was completely normal as it was within range, she would not entertain any further testing of cortisol nor thyroid as she said this was for the endo to do when I saw him again. She said that the lab would refuse testing FT4 and FT3 and would only do TSH, I feel totally lost. I have been given HRT patches and antidepressants to treat my peri menopause/ anxiety which I have not taken as I believe this is not the case…. After extensive research I keep coming back to pituitary/ adrenal issues (hypopituitarism) central hypothyroidism (pituitary) and Cushing’s. My hormones all seem to be very low in the ‘normal’ range and my cortisol is at the high end of ‘normal’ range. It took me 18 years to conceive my daughter at age 35 and I was not able to breastfeed as I produced zero milk, so I am wondering if I also have low prolactin too. I’m really worried that I’m being left to make the connections as nobody else seems to be, my quality of life has become miserable so where do I go from here? I’m not able to fund private healthcare and am at the mercy of the NHS, a rubbish GP and an endo who I have no idea when I will see again. I’m thankful for any care I receive but it is so frustrating as I am kept completely in the dark regarding results etc, I had to send for my medical records to see for myself what is being classed as ‘normal’. Any advice would be greatly appreciated….again I apologise for the lengthy post.
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Reemy
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As you rightly say ….just testing TSH is completely inadequate
Recommend getting FULL Thyroid and vitamin testing done
My vitamin d, folate and vitamin b12 are all at the bottom of the range
Exactly how low …please add results and ranges
What vitamin supplements are you currently taking
How long have you been supplementing
Suggest you give vitamins 8 weeks to start (hopefully) improving thyroid before testing
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water
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
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too
Had 1st injection done at private clinic to make sure I didn’t have a bad reaction then x 6 eod loading doses hydroxocobalamin injections self administered, now gone to weekly.
Ferritin: 111ug/l ,no reference range stated. Inflammation marker?
Folate: 5.1 ug/l, no reference range stated.
Taking 400mcg folic acid daily along with vitamin b complex with low b6 as I know b6 can be overdosed on.
Testosterone: 1.7 nmol/l (0-1.9)
Endocrinologist only checked estradiol, LH, FSH, TSH, FT4. Never had FT3 or antibodies checked ever.
That’s an extremely high dose vitamin D ….possibly/probably too much
NHS guidelines is 1600iu vitamin D daily for 6 months
Similarly B12 wasn’t very low
Unless you have Pernicious Anaemia, sublingual B12 supplements likely adequate, rather than injections
Unlikely to need folic acid and vitamin B complex
Just Vitamin B complex is usually sufficient
Suggest you get testing now
Stop vitamin B complex a week before test as contains biotin and biotin can falsely affect test results
ALWAYS test thyroid levels as early as possible in morning before eating or drinking anything other than water
Come back with new post once you get results
You may be on the right track in thinking that it could be a pituitary/adrenal issues, PCOS comes to mind, it's unusual to lose weight with Cushing's syndrome as you usually have increased weight gain but worth following up with. Have you had an early morning blood cortisol test done? It needs to be done between 8-9am, make sure you get copies of your results as GP's often don't understand them as they rarely see it in their practice. Your urine results are only just under the reference range so it should be repeated in a couple of months time. Sadly not all Endo's are conversant with pituitary/adrenal issues either, where did you see this Endo? Have a look on the Pituitary Foundation website for information on Cushing's. If you are on Facebook then there is a group called Cushing's UK NOT for horses, where we can help you. It might be worth getting some private testing done to check cortisol levels so if they come back high you can show your GP & Endo.
Hi Pauline, thanks for your reply. I have spoken to you recently on Facebook group…. I’m still on my journey to find out what’s wrong with me, still waiting for a follow up with endocrinologist, it’s been over 3 months now. My GP refused any further testing whatsoever, she said that is the reason for me being referred as it is for a specialist to sort out, she wouldn’t even agree to thyroid being retested as she said the lab would refuse everything but TSH , which I know is rubbish, she wouldn’t budge. I thought about changing GP’s but the other ones in my area are even worse it seems. I’m so lost I’ve no idea what to do and do not have extra income to throw at private testing.
PCOS keeps cropping up but after a bit of research it seems that my FSH, LH would be increased and my periods would be messed up or missing entirely? My cycle comes around on average every 24-26 days instead of 28 days in the past but still regular as clockwork so I’m at a loss😞
If you know the lab tests fT4 and fT3 then write to the Practice Manager and point out the error of what your GP is saying. She obviously doesn’t know the lab is willing to do the tests. Possibly she has thought it’s like many other labs in the UK who do not do it.The lab here absolutely refuses to test anything beyond TSH if it’s in range, if it’s not then fT4 will be done. Only if both fT4 and TSH are out of range will fT3 be tested. Very often it’s only done if following out of range TSH a fT4 result is seriously out of range will the fT3 be done.
My GP made all sorts of arrangements to get my fT4 and fT3 done including a written agreement with the Senior Biochemist that it would be done if she noted on the test packaging this was agreed. To make sure there were no hiccups she did the blood draw, completed the paperwork and checked it went to the lab herself. The result was TSH only because the duty biochemist said so!
As for suggesting the endo should arrange blood tests whilst you are under endo care that is standard. In your position I’d contact the endo’s secretary and asking if they will arrange the tests you feel necessary. Hopefully that will help and the GP will be told what action seems needed.
However you still need to put it in writing that your GP has given out the wrong info out the lab procedures. Good luck.
Hi have you ever been investigated for PCOS, raised androgen and testosterone can lead to facial hair growth, acne, thinning head hair, but it often involves weight gain not loss. The other thing is did you lose blood during your pregnancy or during delivery, ie more than normal.
There is a condition called Sheehan's syndrome, heavy blood loss before or during birth can cause some of the pituitary gland to die off, called necrosis. This in turn can lead to issues with breastfeeding, ie no milk at all.
It can also lead to other endocrine or hormonal issues like adrenals, low prolactin, thyroid issues. It's rare but can happen. I have a suspicion it might be responsible for my thyroid issues as mine isn't autoimmune and I had a very difficult delivery and had a massive haemhorrage after my son was born.
The other possibility is a pituitary tumour, these are benign tumours that can affect the pituitary and interfere with its function.
Hi, I do have a high/normal amount of testosterone and free androgens actually but my LH, FSH are low and I thought PCOS would cause them to be high?My testosterone is: 1.7 nmol/l (0-1.9)
My free androgen index is: 3.1 (0-4.0)
I did have a difficult time giving birth to my daughter nearly 10 years ago now, 42 hours of labour and delivery with forceps. I had some blood loss but I’m not sure if it was extreme? It looks like a pituitary issue to me but it’s proving difficult as my levels are just within what is classed as ‘normal’ range, my cortisol urine is the newest which is just within the top of the range.
Hi It might be worth seeing if this forum has a board for Addisons or Cushings disease. You would get much more advice from people in the know. We're mostly thyroid here so it's probably outside our area of knowledge.
Have they done liver enzyme tests? And Creatinine, Creatine Kinase? How about globulins?Those are antibodies which can be specific to other than infections.
Also sometimes what feels like gall bladder can be the urinary bladder believe it or not.
For some reason pain can be referred. Bacteria or blood in the urine? Crystals?
Hi, thank you for your response.Yes, I’ve had a liver profile done each time I’ve been to A&E:- this is the last one done in August, alkaline phosphatase 79 iu/l (30-125), alanine aminotransferase 40 iu/l (5-45), total proteins 77g/l (65-82), albumin 40g/l (36-48), all within what is classed as ‘normal’. I’ve never had Kinase or globulin done though. I’ve had my urine checked several times too but nothing is flagging up, my waterworks are running fine with no pain etc. My eosinophils and bicarbonate always come in as low (below range) and my glucose is always high (above range) but nobody is ever bothered about this and dismiss it.
My diet is quite boring really, I eat veggies, cereals and proteins which are mainly fish and chicken, I don’t really eat red meats, seafood or any time of offal. I’ve cut bread out completely and try and limit sugar which is a bit hit and Miss.
I’ve just recently had a HIDA scan done and am waiting for an appointment with GI specialist to go over results, hopefully something will show up.
Low eosinophils and highish cortisol might indicate a mild cushingoid situation especially with weight loss and rounded belly. Have you ever done one of those cortisol saliva tests? Anxiety and etc. can indicate excess cortisol production.Your adrenal gland on imaging studies looks normal? The right side one.
They should take a second look at your previous imaging studies. I find that
radiologists sort of flick through the images without really focusing on everything.
There was a huge study done where images were sent to several hundred radiologists.
Half of them missed pathology and half of them decided there was pathology where there wasn't. That does not make me feel all that confident.
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