It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Anemia Message Board

Anemia Board Index
Board Index > Anemia | 0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

Mar 16, 2009
hi everyone...
ive been feeling ill for years now and have been visiting all sorts of doctors and specialists over the last year and still havnt found an answer.

severe digestive problems - very noisey/gurgly stomach/ bloating/ mucus in stool /always hungry /food cravings

always exhausted... no energy, feel like im going to fall asleep (worst; in the afteroon normally) cant walk up a flight of stairs without getting out of breath. cant get up in the mornings, sleep for hours and still wake up tired

anxiety/panic attacks and depression (caused by all of the health problems)
easliy embarrassed, difficulty talking to people/social anxiety

dizzyness/ my balance isnt so good/ feeling 'out of it' all the time... strange vision; like the contrast of light is turned up.

chronic post nasal drip

cold hands & feet... i get hot or cold very easliy, if its a little bit cold or a little bit hot. i sweat a lot and when i get a bit cold my hands and feet go white/purple like theyre draingin of blood.

used to have very heavy painful periods, which was solved by going on the pill a couple of years ago, but for the last 6 months ive been spotting in between periods... doctor wants to do an internal exam.

now... ive been diagnosed with 'functional bowel disorder' to explain my digestive problems... im doing a series of food eliminations and then there are several tablets i have to try to see if i can get rid of it... but i dont think its as simple of that.

my question really is what is casuing all the other symtoms.. in particular the fatigue. im just so tired all the time, it isnt right.

ive had sinus xrays, digestive ultrasound, stool tests, urine tests
full blood count, ferretin, b12, glucose, h pylori, ceoliacs, basic thyroid, liver function, and a blood test for something to do with muscle inflamtion.
they all came back normal.

the only one im concerned about is b12 as it was 272 (this was 6 months ago) which i think is too low from everything ive read. but seeing as its in the normal range that doctors give, my doctor is dismissing it and disagrees with eveything i say about it. she says that because my FBC was normal and i my red blood cells are the right size i cant have b12 deficiency. but my symptoms do fit it, and id like to have more b12 related tests.

id also like to get my hormone levels tested becasue of the period problems and becasue i have other symptoms pf hormon imbalance like excess hair and spots. but my doctor says my hormones will be balanced becasue im on the pill.

ive seen 2 doctors now and they just seem to think its all down to the depression and just give me more anti-depressants and treat it like a therapy sessions, rather than talking about more tests or my physical symptoms.

i dont know what to do now... could it be b12? should i push for more tests? is there anything else i should try and get tested?

i'm desperate fro some input, thanks.
Re: B12?
May 22, 2009
Hi help wanted - wow, i truly feel for you, but i'm another who went through years (9yrs in fact) before i got help for an existing thyroid condition which i was told repeatedly did not exist, and by an Endo of all people!! I wish i knew way back then that there were Healthboards on the net!!

As your doctor feels giving you a further B12 test was like cutting her right arm off, i'm a bit worried she will refuse you other tests. For your Thyroid it would be helpful to get: TSH, FT4, FT3 and Thyroid Antobies to rule out Auto Immune thyroid disorders like Graves and Hashimoto's. I have Hashimoto's myself and we believe it runs on my dad's side of the family.

Common with thyroid issues are digestive disorders, but just having a digestive disroder does not mean you do have a thyroid problem. The thing is, there are thyroid receptors in our stomach, ovaries, liver and one other place (i think it's at the adrenals?) The problem is, you could be affected by health issues from one or all of these receptor sites.

I myself had digestive issues. I would bloat, was constantly hungry and could eat more than any of the men at work and not put on weight, i'd be tired after eating, had no energy and about 15 mins after eating lunch i was thinking of food again. After lunch at about 3pm i'd be craving something sweet or more food, then when i finished work at 5pm i could eat a horse. People at work were astonished how i only thought of food and ate so much.

Last year i had a stool analysis test, which also checks for various digestive disorders and it was found that although i digested fats and carbs well, i wasn't digesting protein foods well at all due to lack of pancreatic enzymes. When you don't digest certain foods well they will ferment and particles will float around which can cause inflammation at various locations of the body eg: thyroid and can also contribute/cause allergies, arthritis among other things. Once i began taking digestive enzymes (by prescription) i began eating what would be considered 'normal' meals. I was no longer hungry all the time. My bloating and stomach issues disappeared.

You might want to also check for a gluten intolerance test. This can lead to malabsorption of nutrients and some people will get symptoms while others wont.

Have you tried going off dairy incase you have a lactose problem? Lactose intolerance is linked to problems digesting carbs.

My doctor also did a liver detox test and my phase 2 liver detox is not the best. This isn't good, in particular when it comes to excess estrogen, as the liver can't get rid of it and the last thing you want is excess estrogen as it will mess with your monthly cycles and can results in growth of fibroids.

My periods were also a mess for a number of years and doctor simply told me to go on birth control. If you have a hormone imbalance, particularly estrogen excess, birth control can cause even bigger problems down the track as they are a synthetic hormone and often the hormones in these pills are numerous times more than what our body needs. If you already have excess estrogen, then birth control which is often high in estrogen or estrogen only is adding to your excess. Estrogen excess is linked to breast, head and neck cancers in women and prostate cancer in men.

Being low in ferritin, B12 and Vit D can cause symptoms of their own and can make other health conditions even worse. Ferritin, B12 and Vit D ought to be in the upper ranges of your lab report and they also help a great many things, including your thyroid.

In your case, you are likely low in one or more things and you could be suffering from a thyroid condition in conjunction with a hormone imbalance. Until someone does the relevant tests it wont be easy to help you with sufficient information.

With the B12, you can buy supplements in the healthfood store. I wouldn't be looking from approval from your doctor. Can you change doctors as i truly don't feel she is going to genuinly be caring or helpful enough to get you back on track and feel good again. I've changed a number of doctors until i found a good one who looks at symptoms and lab results. There is no point in staying with someone and feeling ill.

Take care and i hope you feel better soon :)
Re: B12?
Jun 9, 2009
hi guys..
sorry its taken me so long to reply but i actuallly ended up in hospital last week having my appendix out after an extreme bout of stomach pain which my GP tried to tell me on tues was too much stomach acid. and sure enough, later that night i had to take myself to the hopsital as the pain got so bad... i was diagnosed with grumbling/rumbling appendix on thursday and had it our friday - it was very nasty and pusy- really needed to come out. Now im at home recovering.

anyway, i was told when i went to see my gp on that tuesday that my latest bloods taken the previous friday were all normal. When i got to hospital on tues, my bloods were all over the place... high WBC, Inflammation markers etc

but here are my results from my blood tests done by the doctor the week before last

Heamoglobin estimation 14.9
RBC 5.01
MCH 29.7
MCHC 33.8
Heamocrit 0.44
MCV 88
white cell count 8
platelets 342
neutrophil 4.2
lymphocyte 3.3
monocyte 0.35
serum folate 6
b12 280
serum ferretin 20

immunoglobulins were tested - one of which was high, but im assuming this was to do with the appendix starting to kick off.

now i was orignally worried about the b12 level but its actually gone up (272 to 280) since my last test almost a year ago.. but i still think its too low.
looking at the results of this new test im more worried that my ferretin has dropped from 67 to 20 in under a year... is this too low? could it be the casue of my fatigue etc?

i was told my thyroid was being tested but none of those results mean anything to me thyroid wise - i was looking for TS4 etc?

any input would be GRATEFULLY received!! ill keep checking for your responses

many thanks
Re: B12?
Jun 10, 2009
Hi helpwanted - yes, your B12 and ferritin are both low. Are you taking any B12 supplements? Sublingual B12 which you dissolve in the mouth are great. I put my dad on these and his B12 went nice and high, up in the high 500's. You would likely notice feeling better with a higher level of B12.

Most definitely a ferritin of 20 could be making you tired. Remember we are all individuals and we'll all feel different at a level of 20. It might be within range, but it's still quite low. You would benefit greatly by lifting it higher.

For thyroid you are looking for TSH, T4, T3 and 'if' they check for Thyroid Antibodies, just incase you had an autoimmune thyroid disease.

Good to hear they got your appendix out in time. I'm sure you will feel so much better. Hoping you have a quick recovery :)
Re: B12?
Jun 10, 2009
thanks guys, im not happy about either if these levels so ill *try* to talk to my doctor about them, and also try and get a more comprehensive thyroid test.

Flowergirl, what you are saying about the b12/ferretin makes sense, although im wondering if my i saw no improvement in my symptoms when my ferretin was higher becasue my b12 was still low, and i need both to be raised at the same time to see any improvement. Im hoping that the appedicitis has something to do with my stomach problems but im not holding my breath.. im not sure why i would have low b12/ferretin, im thinking maybe absorption problems related to my stomach symptoms... but then surely id be low in everything else too?
Re: B12?
Jun 11, 2009
so i went to the doc today..
she wouldnt dmit tht my ferretin ws low.. she said it ws nothing to worry about because im not aneamic and becasue the level fluctuates anyway. but she did agreee that it had dropped quite a lot since last year, so shes given me some b12 tablets and ferrous fumate to try for a few months, and agreeed to retest my levels. she also didnt retest my thyroid as she sid she would on the last blood test becsue it was normal last years and she said it rarely changes. but she has greed to test it again when i have my b12/ferretin rechecked, and i will be sure to get a copy of the results this time.
i asked her about absorption issues and she said my inflamed intestine could have affected the absorption of iron a bit, but said its normally due to periods, and mine have been getting heavier again lately but i dont know why.

so basically all i can do is take the pills for a few months to see if my levels go up and if theres any improvement in symptoms... if this doesnt work ill recheck my thyroid, but if thats normal then i really dont know whats causing my illness. Fingers crossed that this works. im also going to have to keep an eye on my periods... they used to be very heavy before i went on the pill, but they were a lot lighter and less painful for the past few years... in the past 6 months ive had spotting and theyve started to get heavier again... im still on the pill so the doc says my hormones should all be balanced so i dont know whats casuing the period problems... shes suggested an internal exam in the past...
Re: B12?
Jun 20, 2009
Hi helpwanted - the 'transvaginal US' is an internal and external ultrasound, which i'd advise everyone who has period issues to get.

As for malabsorption issues, depends what issues you have. I have low pancreatic digestive enyzmes to digest all protein foods so i'm taking something for that. Some people have low stomach acid so need help from digestive enzymes to help digest food. Some people have gluten intolerance and the gluten causes damage so that malabsorption of nutrients occurs.

I've got a long standing ferriting problem and my Vit D is taking forever to move upwards, yet my B12 and folate are fantastic. You need adequate B12 to help absorb folate, just like you need adquate Vit D to help with calcium abosrption.

Vitamins are funny old things, it appears that for everyone one vitamin we need it in turn assits absorption of another key vitamin/mineral. Kind of like Noah's Ark, two by two.

The doctor who told you that thyroid results couldn't change from one year to the other is very wrong. My dad doesn't have a clear cut thyroid issue and he doesn't need to be on meds, but his thyroid TSH, T4 and T3 all changed in the space of 3 weeks, especially his TSH. It went from being hyperthyroid to a bit higher than desired all within 3 weeks. His T4 was also in the hyper area. The weird thing was that once i got him onto sublingual B12 and Vit D and some more ferritin his thyroid figures on the following blood test all came back to much better figures.

The fact is that so many things we are actually low in can affect how other areas of our body functions. Sadly a lot of doctors dont see this!!
Re: B12?
Jun 27, 2009
thanks guys.
im still on the b12 and iron pills and will be getting the levels retested in a few months. i will also be getting my thyroid retested but i dont know how much of an indepth test that will be.

im going to book for an internal exam next week as im still having the period problems.
Audrey its interesting that you mention the pancreas, as my pancriatic function was a little low on my last blood test, but this was when i was in hopsital with appendicitis so it may have something to do with that.
The only other abnormal result ive had is antibodies in the gut but i hsave to wait to see the gastro doctor about this as the doctor didnt know if it meant anything.

so my plan of action at the moment is to get the internal exam to rule out anything there... if they dont find anything im guessing it has to be hormones casuing my period problems so ill push to get them tested even tho my doc is adament they will be normal becasue im on the pill.

i will see what my b12 and feretin levels are and discuss the folate level although im sure shell say its fine as it must be within range.

i need to see the gastro doctor about the abormal blood result. at least when i was in hospital i had xrays and a ct scan and ive also had an ultrsound, so i know now that there is nothing physically wrong with my digestive system.

untill then its struggling through each day as it comes.

if i cant get any answers from this i really am out of suggestions as to whats caused me to be ill all these years and i may well have to give up on life
Re: B12?
Jun 30, 2009
No problem FLFLOWERGIRL :) I'm not charging for proof reading quite yet :D

Helpwanted - Just a cautionary word, being on the pill does not mean you can't have hormone issues. In fact the pill can make a hormone issue worse in some cases. A lot of the modern day birth control pills are high estrogen and some new versions are even totally estrogen. If you already have excess estrogen, being on the pill is adding even more estrogen. This can lead to a lot of problems.

The thing is that your estrogen to progesterone ratio needs to be correct and balanced. If the estrogen just gets a higher than the progesterone then it will lead to estrogen dominance symptoms, one of which can often be irregular, heavy, painful periods.

Actually in my research i've found low thyroid and adrenal issues to be listed as moderate estrogen dominance side effects.
Re: B12?
Jun 30, 2009
help wanted:(-- Hi there! :wave: I have a friend that was diagnosed with low B-12 and iron without a cause found. She also has very heavy periods but this doesn't effect the B-12. Her GYN told her to go on birth control until her ablation and she bleed like crazy from the pill and had to go off it. It also took her a while to have a some what normal cycle. Her ablation was not successful either. They want her to repeat it. That is usually the first step. In your case you are waaayy too young for this procedure which makes it even more difficult for you. Perhaps your thyroid will reveal something. This same friend was told that she didn't have a thyroid problem because her numbers were normal and I sent her to another doc for a trial dose of synthroid as a chance because her symptoms were the same as mine and she ended up having a goiter that her original doc missed. So you have to really know your symptoms and labs. First, you really need to get your B-12 up and see how you are feeling. Take care and do keep us posted. We are thinking of you! FLFG :)
Re: B12?
Oct 1, 2009
Hi guys, me again!

time for an update as im still getting nowhere and am really sick of it now.

ok so my ferretin went from 67 last year to 20 this May. Doctor wasnt bothered as it was within the normal range. but i pursuaded her to prescribe me iron tablets which i took for a few months... and my latest test result (18th Sept) my ferretin had gone up to 37, still not great. as for the b12, it started off at 272, then 280 and has gone up to 301 (18th Sept) after a few months of b12 tablets . Someone mentioned earlier in the thread about my folate level... that was 6 in may and is now 4.3 ( range 2-20)

Ive also talked about the possiblity of thyroid problems with some of you. i dont know what my last test results were as i was just told they were normal, but i asked for a full thyroid panel at my last blood test, and all thats in the results is serum TSH which is 2.3 (range 0.10 - 5). So this is normal aswell.

I dont really know what to do now..
my b12 and ferretin levels still arnt at a high enough level for me to know if they are casuing my fatigue.
I dont know whats causing the levels to be low. The last time i went to the doc she said that everything was normal and asked me 'what else i thought it mite be'.. basically trying to convinve me theres nothing wrong.
Im still having period problems.. havnt been for an exam yet, but she doesnt seem very interested in investigating that.
Only benefit i got from the apendix removal is not having the odd day of diabling stomach pain that i used to get. but still get all the other digestive problems, fatigue, temperature sensitivity, vision disturbances etc. Ive been on anti depressents for several months now which help control my anxiety a bit, but im getting more and more depressed each month of not getting better.

HELP! what should i do now?
thanks guys x
Re: B12?
Oct 1, 2009
What you need to do is keep at it with the iron supplements. It's taken me over 3 years to get from 8 to 89 with quite a lot of set backs along the way. I can't afford to go a day without my iron supplements.

Secondly, are you on sublingual B12? That is the surest way to get your numbers up and i think FLFLOWERGIRL made that suggestion to you ages ago.

Thirdly, no, TSH is not a thyroid panel test and TSH is useless in most cases. My TSH was normal for 9 years and i had Hashimoto's the whole time.

For thyroid you must request this: TSH, Free T3, Free T4 and Thyroid Antibodies. You actually need to say that you want these specific test to your doctor. Dont just walk in and say you want a thyroid panel test or a thyroid test as all they ever do then is a TSH test and nothing else.

With your ferritin being up to 37 you should be feeling much better, but if there are other things which are low, such as your B12, or thyroid issues, that can be causing your recurring symptoms. B12 tablets or multi B tablets wont do the trick. You need sublingual B12 to get anywhere fast.

Have you checked your vitamin D levels? they are likely low too.

Have you had a gluten intolerance test as a lot of people appear to be intolerant to gluten and that also causes havoc with ferritin and other things.
Re: B12?
Oct 5, 2009
Hi Audrey,
The trouble is i dont know if its the ferreting, b12, both or something else. i agree i need to take the iron to get my levels up but i cant keep getting tested so i wont know if its gone up. i feel no different now than i did when my ferretin was 20, or in the 60s. i think my b12 and ferretin both need to come up for me to feel a difference. and even then i dont know if theres something else contributing to it. i need to know whats casuing my levels to be low in the first place, i dont know how to find that out anymore.

Yeh i know sublingual b12 is better but it doesnt seem to be that big here in the UK. i was just given b12 pills.. i dont know if i can get sublingual.
Yeh its so annoying... i asked for a full thyroid test becasue they just did the tsh last time, and theyve just done that again, i wanted a more in depth test of my thyroid.

I havnt had my vitamin D tested, ill ask about that. And no, im not gluten intolarant.
Re: B12?
Apr 16, 2010
Hi everyone...
Sorry but im going to have to drag this thread up again as things have still not improved for me, infact, they are worse. My anxiety and depression is worse than ever becasue i cannot get answers for why i feel so ill. I am really on my last legs, if i dont get well soon, well... theres no point me being here.

Ive had all the basic tests - everything is always normal.
The only thing that shows up to me is that ferretin and b12 are always low normal. I took iron and b12 tablets and they levels went up a bit but i felt no different. My b12 seems to flutuate between mid 200s to low 300s wether im taking pills or not.

Tried every IBS med theyve thrown at me and nothing has worked. Had all sorts of xrays, ultrasounds, nothing was found.

My doctor keeps implying its in my head and basically just asks me what i think it is when i go in... wont even suggest any new avenues to try. she also tries to say i have health anxiety.

I have been on anti depressants for around 18 months now, and apart from taking the edge off the panic attacks, they havnt done anything. Surely if that doesnt prove my problems arnt DUE TO the anxiety or all in my mind then what will? There has to be something else casuing it. Doc has only done fairly basic tests and becasue these were 'normal' i apparently feel like hell for no reason? Whatever she says... i know this isnt right.

Im 22 years old i should be out having fun living life.. instead i spend everyday on this constant foogy dream depressed anxious state feeling so tired i could die.

Things im still considering from all my research...
- Thyroid - she still has only tested TSH (which is always normal) and says becasue this is fine my thyroid is fine... i know i need T3, T4 etc tested!!

- Auto immine diseases

- Dysautonomia

- CANDIDA (she refuses to ackowledge this exists)

- mitochondrial diease

- CFS - this seems to be what theyre leaning towards but when i saw the specialist she was wary of diagnosing it bcasue she thought it could be more of a digestive problem. im going back to see her soon.
- also need to consider viruses that could cause CFS such as epstein bar, hhv6 etc (as they dont really know what casues CFS yet or how it works) - it ould just be the symptoms of something else.

- Adrenal fatigue,lyme disease have been suggested to me.

- hormone imbalances (she wont test this as im on the pill so she says they should be balanced..rubbish!!)

- some other digestive problem they havnt found... maybe something to do with absorption.
...and i dont know how much the b12/ferretin is conributing to my problems.
Does anyone have any thoughts on that?
My latest b12 was 335 which is better (havnt taken pills for ages) and ferretin was 23 which still isnt great.

I have ruled out..
ceoliacs, whaeat and dairy intolerance, chrons, blood count, calcium, blood glucose and liver and kidney function is fine. Rheumatoid factor was normal.

Would love some support and suggestions from you guys.. i've got nowhere else to go.
Re: B12?
Apr 21, 2010
help wanted - why do you persist with a doctor who isn't interested or doesn't have the knowledge and has tunnel vision?? If i had stuck with my same old doctor i would never have gotten the help which i ended up getting, mind you it took 9 years. I regret wasting 9 years, but at the time i didn't have the help from people on healthboards and so simply kept taking my doctor's word for everything.

In the end i found a great doctor who discovered that i did have adrenal problems and did have a thyroid autoimmune disease. Absolutely all my range of symptoms stemmed from these issues eg: my tiredness, low/difficult to raise ferritin, hormone problems, menstrual problems, digestive problems, low vitamin D.

I would encourage you to keep searching for the right doctor for you. There are good doctors out there, i know they are far and few between, but they are out there. So take the knowledge you have gained and you will know when you have found the righ doctor. Good luck :)

All times are GMT -7. The time now is 03:33 PM.

© 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!