Hi everyone. For the last few months I've been feeling progressively worse than I usually do (normally I feel terrible too)
Ive been exceptionally thirsty but I have been going through a bag of ice a day. My hair is normally very fine but it has been thinning so much, and I have patches on my head. Ive also been experiencing extreme breathlessness and a rapid heart palpitations (very severe) im sweating a lot more than I do aswell. My appetite is virtually non existant. (Ive never had that before, I'm normally hungry all the time). I have insomnia but extreme fatigue too. My skin is unbelievably dry. I know I have an underlying illness as I keep telling my Dr and health specialists that I keep having attacks/flares of some description. As yet I don't know what it is.
I do already have a folate and B12 deficiency and this doesn't feel the same in terms of symptoms. Is anyone familiar with any of the aforementioned symptoms?
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ChristinaT
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They sound hypothyroid to me and I'll give you a list of clinical symptoms (300+ believe it or not). Also sometimes our TSH doesn't rise sufficiently to be diagnosed (in UK 10+) when some countries prescribe around 3+. You should also have a vitamin B12, Vit D, iron, ferritin and folate as deficiencies in these can also cause problems.
Breathing problems should be investigated and I'll give you a link:-
This is also from another doctor who condemned they way we are now diagnosed and for being prescribing for patients on their symptoms alone (the way he was taught as a junior doctor) he was pursued by the GMC, not by the 2,500 people who sent testimonials to his hearing. We are convinced his heart attack was brought on by the consistent appearances before the GMC. Some excerpts:-
In his capacity as a Consultant Virologist at the Queen Elizabeth Hospital in Birmingham he was referred patients who were thought to have Chronic Fatigue Syndrome, Myalgic Encephalopathy (ME) and other problems thought to be related to viral infection; he felt that a number of these people had classical signs and symptoms of hypothyroidism and treated them with thyroid replacement with encouraging results. He then started working with a number of General Practitioners to address the possibility that there may be a group of individuals who have normal thyroid chemistry but are suffering from hypothyroidism. The British Medical Journal published a letter in 1997 from Dr Skinner and a number of General Practitioners bringing this to the notice of the medical world.
Dr Skinner’s work involved a specific group of patients who have thyroid chemistry within the reference range but clinical signs and symptoms of disease; he argued that blood tests should not be pivotal in the diagnosis and treatment of hypothyroidism as they had never been validated as a marker of optimal health. Secondly, in this particular group of patients it was not known what their blood test results were when they were healthy therefore using blood tests as the only criteria for diagnosis was not sufficient.
It must be emphasised that Dr Skinner was not doing anything new nor prescribing new medication for the treatment of hypothyroidism; patients were diagnosed and treated for this disease based on clinical signs and symptoms and medical examination before blood tests were established and thyroid replacement using natural preparations was the norm prior to synthetic preparations.
The treatment Dr Skinner used was one that has been used for many years namely thyroxine which is the drug of choice for most patients with hypothyroidism and in those who did not respond to this he used the natural Armour or Erfa Thyroid which were used in the treatment of hypothyroidism before synthetic thyroxine was manufactured. His methods were scientifically sound and he always wrote to the General Practitioners and other medical carers to inform them of his reasoning behind the diagnosis and treatment of patients.
and
Throughout his work with this group of patients Dr Skinner tried very hard to engage with the rest of the medical profession and address this difference of medical opinion which results in lack of proper medical care in this particular cohort. As far back at 1999 he organised a conference and invited Endocrinologists, General Practitioners and representatives of the Royal Colleges and Department of Health and other medical bodies to engage and discuss their difference of opinion and formulate a way forward for the diagnosis and treatment of these patients. No representative from any organisation except an epidemiologist from the Department of Health attended. The same pattern followed all efforts including further conferences, meetings and letters by Dr Skinner to have a public discussion with medical colleagues to address this shortfall in the care of this particular group of patients.
The Royal Society of Medicine’s reply to Dr Skinner’s repeated request for a conference to address this problem was to organise a conference on thyroid disease and refuse Dr Skinner’s request to speak on his experience in diagnosis and treatment of hypothyroidism. The only Royal College which sent a representative to speak at the World Thyroid Forum organised by Dr Skinner in 2012 was from the Royal College of Obstetrics and Gynaecology to speak on fertility problems in hypothyroid patients.
I had severe palpitations and also nausea plus other symptoms and many investigations by various 'experts', except a blood test for a dysfunction of my thyroid gland. I was discharged by A&E Cardiac Dept as 'probably viral with high cholesterol' 7 days previously. Bedridden by now I was advised by a first aider and he was proven correct and TSH was 100. GP asked, who provided blood test form and I told her I phoned surgery and demanded one myself.
Thank you for reply 😊 Gosh I'm so sorry to hear you went through that, it must've been awful 😞. Im not surprised you were bedridden with a TSH that high! Shocking that the hospital overlooked something like that, espeically when a basic TSH blood test is normally routine (well it has been for me anyway). I do hope you're much better now than you were. I've been convinced for years Ive had a thyroid problem. I have all the classic symptoms, but I'm always told I haven't. I paid for full thyroid bloodwork myself (results are on a previous post). Ive also had urine test done which revealed I have an iodine deficiency? The palpitations are pretty severe Ive never experienced them before, I though I was having a heart attack. Ive been to A & E numerous times in the past but they never take blood tests. I'm always accused of being anxious or "there's nothing wrong with you". To date I have severe osteopenia, low B12, low folate and a few years ago my iron markers were off (ferritin was fine, but serum iron and transferrin saturation were low). Not anemic. I even think I went low in Vitamin A at one point. I had insatiable cravings for sweet potatoes and carrots. Ate them everyday for approx two months but they cravings didn't dissapear. One of my eyes was really red and itchy, took eye drops and it just aggravated it. Looked up symproms of Vitamin A deficiency and it mentioned something about keratin cysts on scalp (which I have btw) they appeared a few years ago, and doctor fobbed me off when I mentioned them. Obviously I could've been jumping to conclusions but I felt pretty sure I was either Vitamin A deficiency or running into a deficiency, so I supplemented for a few weeks. My eye problem dissapeared as it did my cravings. However I didn't supplement enough as I didn't feel confortable in taking mass doses of it without supervision.
I have no idea what the underlying cause is but unless the hospital are prepared to actually look at my thyroid I will never know. There is a family history of lupus so I know I will need that investigating properly. (I had ANA and ANCA antibodies tested and they came back negative)
Our heart struggles with too little thyroid hormone and also it is slightly different to the palps when we've too much or hormone doesn't suit us.
I went to the A&E quite a few times (sometimes by ambulance) and was always told there was nothing wrong (with my heart that is) but at times it did struggle and it was due to needing hormone replacements.
It also happened when I was on levothyroxine at a reasonable dose. I'm fine now and haven't had a ECG since I went onto T3 only and all symptoms resolved.
I hope the above links help you.
Check for anaemia and or v low ferritin. Craving ice is a classic symptom, along with hair loss and palpitations.
I have an appointment at my local hospital next weekand will be requesting some blood work then, I will ask for iron levels to be checked. All markers. Thank you so much.
ps no appetite can be a sign of zinc deficiency. You sound as though you have a global malabsorption problem.
I'm wondering whether my doctor or hospital will actually allow me a blood test for zinc? I can't supplement via oral route because I end up having "attacks" of some description. Symptoms are horrific I have no idea what causes it. I can only just tolerate vitamin injections (even though I need them) I have no idea what is wrong with me 😕 but I do feel I have a problem with absorption, or certainly something which depletes my. Nutrients. I don't have coeliac disease or any bowel diseases or disorders, I'm at a loss as to what it is causing me all these problems 😞.
You poor thing. There's no point having a blood test for zinc because it is no guide to what is happening at cellular level - this is mainstream thinking, not crazy stuff. If you mention craving ice they should give you the iron tests.
If you have autoimmune thyroid disease it is common to have absorption probs. Also autoimmune gastritis, which can progress to pernicious anaemia, also is heavily assoc with thyroid disease. They checked u for PA? Gastrin, antibodies to intrinsic factor, can't remember the third test. Anyway, those antibodies come and go, so negative results don!t tell you much. How low was yr b12? H pylori was negative, I'm assuming.
Can't supplement orally sounds rare and interesting. I wonder if you put that up as a post asking if anyone else has experienced that, whether you might hit on some clues.
No doubt you're right there regarding zinc. I had antibodies tested for thyroid and both came back negative, or rather below whatever the range threshold is for antibodies. I was checked for PA when I was first diagnosed with B12. They said I didn't have antibodies. B12 levels were 187. Yes I've been tested for H.Pylori and nothing there. Ive even had an endoscopy where they take sample and check the bacteria in the small intestine and they said everything was fine. Ive been tested for SIBO, first test was positive and then they did a second test using a different drinking solution which came back negative. (Plus any antibiotics, herbal stuff I can't take without consequences).
These "attacks/flares " or whatever they are almost kill me. Literally. I get rapid cognitive function decline, fever type sweating, very severe nothing I can compare it too. My face goes extremely puffy, my arms do too, I'm guessing it's oedema of some description, my abdomen swells and looks like ascites. My spine curves and I get a hump at the top of my back (looks like a hump, layer of fat) I get ileus of the bowel, I'm extremely constipated. Brain feels starved of oxygen, I'm beyond dizzy. I'm bed bound. I get lots of freckles on my face, my arm pits go black. I get migranes, violent vomiting, extreme lower back pain and lower abdominal pain. Extreme thirst, and hunger, salt cravings. Body temperature goes almost hypothermic. I have low blood pressure and low blood sugar, sometimes that goes the other way. Hair goes thin (normally thickens up slightly after a while) I get acute depression and anxiety and have even experienced psychosis aswell. Feel like I'm being hit from every angle. I Know it's affecting my organs to go like that, I just don't know which ones. Within a few weeks post attack my B12 will drop rapidly and my bloodwork goes funny. But nothing can be pinpointed 😕
Gosh. And Addisons has been "ruled out". I wonder whether anyone who has experienced Addisonian crisis would say it sounds the same. again you could post that description again and ask.
I looked at yr thyroid results, as you say, you don't have Hashis and you are clearly euthyroid. It's not the thyroid, but there's a strong overlap of symptoms, so it is something, or two things, strongly associated with hypo. B12 would fit, and the tests don't rule it out. An Addisons of course is notoriously not diagnosed until too late, you may be well on the way and not know. Have you posted in the PA forum? There's something seriously wrong and you are doing well to work so hard towards solving it alone.
Ask for a full iron panel when you ask for blood tests. Ferritin alone won't tell you all you need to know.
The things you need to ask for are serum ferritin, serum iron, and TIBC. Transferrin saturation can be calculated from these results. It would be a good idea to ask for CRP as well.
Hi humanbean. Yes I will definitely, I know previously it was my serum iron and transferrin saturation which went low, the other markers TIBC and ferritin were fine. My CRP is usually about 5? I Think? But yes I will ask for that now you have suggested it, thank you.
Thanks for the links, I've just looked briefly at some of the info on it, and if my iron bloodwork is anything like it was last time then it states it would be iron deficiency/chronic illness.
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