This is my first post as I have felt too unwell to go into it all until now. I'm afraid it is quite a saga but here goes...
In November last year I started feeling really unwell and getting fevers all the time. The fevers have now gone. I now get a stinging pain going through my back, abdomen and groin. I feel dizzy a lot of the time or lightheaded at other times. I have IBS type symptoms. I had doarrhoea for 6 months. I can't cope with stress or drama including on the tv. I get very cold and shivery or get really hot. My body often feels like its in trauma trembles if I try to do the slightest thing (even cleaning my teeth or throwing bread out to the birds). I have lost over a third of my body weight. I've reacted to a lot of foods, antibiotics, ct dye etc. and often itchy. My hair is coming out in handfuls. I had cystitis like symptoms for 8 months but no bacteria and still really sore in that area.
My CT scan in January showed adrenal nodules. Finally got to see an endo in June. He thought the nodule s were benign but did some blood tests and asked me to do a dexamethasone test. I said I felt to ill to take 2 steroids at the time and he said I could do it when feeling better. The blood tests showed subclinical hyperthyroidism and he told my GP to monitor it but otherwise wouldn't see me again. TSH 0.05: T4 11.6 didn't test T3. At this time was feeling hyper. 2 weeks later my TSH was 0.12: T4 15 and T3 5.2. In July my T4 was 10.7 and TSH 0.16.
In desparation I went to see a private general medical consultant and he arranged for me to have an endoscopy and colonoscopy which mostly came out okay. He then looked at the possibility of Addison's and wrote to my endo. My endo then asked my GP to do a cortisol test which came out at 267. My private consultant arranged form me to have a synacthen test 1 week later, the results being 380 baseline and 670 after the ACTH serum. This proves that I can make cortisol when given ACTH but doesn't rule out problems with my pituitary gland. My endos response to this was to do the dexamethosone test. When I questioned this given that I had low cortisol he discharged me from the clinic.
My WBCs, folate and B12 have been going down. My ferritin going up. Since June 24th I have been taking 1200 B12, 400 folate, 3000 D3 and multivitamins and my folate and B12 have gone up. I have now been given folate 5mg supplement and hoping that isn't too much now that my folate is going up???
I'm sorry this is such a saga but I am desperate for help of any kind. Apart from medical appointments I have been to ill to leave the house for the last 10 months. I am really angry with my endo as I feel he has let me down badly and was only intetested in proving my nodules were benign and not intetested in my illness. Please can anyone help? Thanks.
P.S. so far nobody has given me any medication apart from pain killers and folate.
Written by
Deljo
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My first response is: have you had your antibodies tested? It sounds like Hashi's - or autoimmune thyroiditis, as UK doctors insist on calling it!
Secondly, I'm afraid all those results that you've so carefully typed out, are meaningless without the ranges. But, if you just add the ranges in there, it's going to become unreadable. It's best laid out like this:
January
folate 5.9 (range)
B12 192 (range)
ferritin 274 (range)
WBCs 8.4 (range)
That would be nice and clear and help people help you!
Thirdly, multivits really are a waste of money. You're not going to absorb anything from them. There are far more practical ways of increasing your levels than just taking a bunch of stuff all at the same time, half of which will cancel out the other half. Plus, 9 times out of 10 the use the cheapest ingredients - even in the most expensive multis - that you won't be able to absorb, anyway.
If you give the ranges, someone will be able to tell you exactly what you should be taking - type of supplement, quantity, cofactors, etc.
It sounds like low cortisol so possibly Addisons, you need to ask to be referred to another Endo who is used to Pituitary problems. Its your right under the 2102 Social & health care act
Thank you PaulineS. I think my cortisol is low too, and feel that they are not exploring whether I can make enough of it without being given the synthetic ACTH. I have asked for a second opnion and also looked at possibly seeing one privately.
The NHS doesn't believe in adrenal fatigue. You either have Addison's or there's nothing wrong with you. But, Addison's is very cortisol, so it doesn't look like you have that.
Thank you for your response. I haven't had my antibodies checked by my GP nor my endo but I did see an immunologist who did a whole range of tests but didn't give me the results. She just said my IgA was high, my IgM was low and that I didn't have any immunity to pneumonia. Otherwise all fairly common in someome of my age?? My endo doesn't want to know. I have asked my GP to refer me for a second opinion and also looked at going to see one privately.
Apologies about the ranges. I was trying to keep it short.
January
WBCs 8.4 (3.7 - 11)
Ferritin 275 (10 - 291)
Folate 5.9 (>5.4)
B12 192 (160 - 820)
May
T4 11.6 (10 - 22)
TSH 0.05 (0.1 - 4)
June
WBCs 4.5 (3.7 - 11)
Ferritin 333 (10-291)
Folate 4.7 (>5.4)
B12 238 (160 - 820)
T4 15 (10-22)
TSH 0.12 (0.1 - 4)
T3 5.2 (no range given)
HbA1c 27 (<42)
July
WBCs 3.6 (3.7 - 11)
Folate 4.8 (>5.4)
B12 304 (160 -820)
T4 10.7 (10-22)
TSH 0.16 (0.1 - 4)
Sept
WBCs 5.2 (3.7 - 11)
Ferritin 291 (10-291)
Iron 17.9 (11 - 29)
Folate 12.5 (>5.4)
HbA1c 32 (<42)
When my cortisol was 267 I was told normal would be =>450. When I had it done a week later privately and it was 380 it said on the test results that normal was =>410.
Thank you for the advice re the vitamins but I was in a situation where I could tolerate only a very limited diet this has changed now and I am eating normally. 😊
I will have a look at the Addison's website. The private endo I'm looking to see is supposed to be an expert in pituitary glands and he also does NHS but I imagine he is very popular and so may be difficult to get an appointment.
So, your cortisol is not that low. Don't worry about the different ranges. Every lab has its own ranges and you have to interpret the result according to the lab where the test was done.
Were all your thyroid tests done at the same time of day and fasting? If not, you can't compare them, because TSH decreases throughout the day.
Your TSH is low and so is your FT4, but your FT3 wouldn't be low on most ranges. Which is strange, but having high antibodies can account for a lot of strangeness. But, if you don't have Hashi's, then you should be researching Central Hypo, where the problem is with the pituitary or the hypothalamus. GPs know nothing about that, so you would have to ask an endo.
In May my thyroid tests were done at 10.30am, in June at 1pm and July 9am all without fasting.
It says on the NHS website that problems with the pituitary and I think not making enough ACTH, can have very similar symptoms to Addison's and I do seem to have and had a lot of the Addison's symptoms. I am now waiting for a second opinion as my endo, who has only seen me once and didn"t recognise any of my symptoms, has discharged me from his clinic. If the NHS don't come up trumps I am also looking at a private one who seems to be an expert in pituitaries. Not that I"ve got lots of money to throw away but I'm just desperate to be well again. My life stopped in November and I have been in severe pain and discomfort for 10 months.
Thank you again for your help. It's reassuring to talk to people who understand your symptoms. 😊
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