*sigh* another pointless appointment: CFS?

I went in to see my gp today because I'm folate deficient and he hadn't prescribed 5mg folic acid when I saw him a few weeks ago. I quoted patient.co.uk's page on folate deficiency and he smiled and nodded when I said I couldn't buy higher than 800mcg and there is me thinking why didn't he prescribe it in the first place but anyway...I''ve come out with the 5mg I went for.

He tells me that my levels aren't that low. Really? I think they look pretty low

Folate 3.83 ug/L (greater than 5.38)

Ferritin 7.8 ug/L (10 - 291)

25Oh vitamin D 38.1 nmol/L

Vitamin B12 488 ng/L (211-911)

He doesn't think I have PA because my haemoglobin is fine. I tried to convince him to test intrinsic factor and parietal cell antibodies but he said that the PAab won't be done by the lab if my b12 is in range. But he will test IF along with repeat ferritin,d,folate, thyroid function tests and tpo ab. I asked him why we haven't tested the other thyroid antibodies and again said the lab wouldn't do it with my tsh and ft4 in range. This makes no sense because my tft were in range when I had the first tpo ab test done.

September 2013

TSH 1.40 mu/L ( 0.35-5.5)

FT4 16.4 pmol/L (10.0-19.8)

Thyroid peroxidase antibody 92 iu/mL (0.0-100.0)

January 2014:

TSH 3.40 mu/L ( 0.35-5.5)

FT4 13.3 pmol/L (10.0-19.8)

Thyroid peroxidase antibody 247 iu/mL (0.0-100.0)

He asked me about my symptoms again. I said about the fatigue,cold hands, tingling in my extremities, poor appetite but weight gain,intermittent joint and muscle pain, difficulty sleeping,brain fog. I told him that these symptoms come and go in waves. I will feel awful for a while then get a bit better then back to feeling bad. Then he looked at my results again and he said that nothing is out of the ordinary that goes with my symptoms but maybe I have chronic fatigue syndrome or fibromyalgia. My symptoms apparently don't suggest thyroid disease. He is going to refer me to a special clinic that deals with both. He has to fill out a huge form for it and we will have to run lots of tests before I can go there. I kind of stared at him in disbelief but said ok because the thought of lots of tests sounds appealing and maybe something will come up?

Did I do the right thing? My hubby thinks that there isn't much difference from what my previous doctor did. First doctor went with "you're only depressed" and this one is going with "chronic fatigue".

33 Replies

oldestnewest
  • I wonder what GP's did years ago before they had a very convenient CFS pot to throw you into! The truth is he didn't have a clue how to help you, but at least he could tick a box for CFS and get you out of his office. Sorry, if I sound like a grumpy old skeptic but that's how I feel after hearing that same old story for over 20 years.

    Your folates are low (Metagenics Actifolate is the best for that), and so is your ferritin. Hopefully after topping up on them you will see some improvement. Your intracellular magnesium may also be low, but doctors rarely test for it even though it is crucially important for heart and hormone balance.

    If you see no improvement then I would suggest you have some private tests done and see a doctor privately. I assume your adrenal levels haven't been tested?? Your symptoms all suggest hypothyroidism and all of your endocrine levels need to be optimised for you to feel well.

    Check these things first and these links, and then if necessary we can move on to check other things. Jane x

    thyroiduk.org.uk/tuk/diagno...

    thyroiduk.org.uk/tuk/diagno...

  • I know Jane. I don't want to dismiss people that suffer with CFS but I feel this isn't the right diagnosis for me. I might be wrong because I really don't know about CFS. He said we will have test lots of things before I can go the clinic because the clinic requires all these tests. I have no idea what these tests are and he couldn't give me a list of them. Do you know what these are?

    My adrenals haven't been tested despite me saying it several times to both doctors. I'm hoping this is one of the things tested for the CFS clinic? My sex hormones also haven't been tested and I think they should be checked.

    I'm on 5000 of vitamin D, 3 doses of Floradix x day (suffer with bad constipation and Floradix doesn't make it worse) and now 5mg of folic acid. Also planning on taking vitamin c next time I am in town.

    I have blood tests booked for the end of March and I asked him to confirm what we are testing and he said: ferratin,folate,vit D, IF, TFT and tpo ab. He will aso add any of the tests that I haven't had done yet that are required to see the CFS clinic.

    If I get no joy from those I will most definitely spend some money to have some private blood tests because I'm not convinced that my thyroid is ok. How can it be with tpo ab climbling?

  • I don't have any medical training, but to me it looks like you are probably hypothyroid. Both your TSH and TPO have risen while your fT4 has gone down. I think it is appalling that the NHS can't see it.

    After being ill for many years I was finally diagnosed with Hashimoto's and got treatment ( privately) when my TPO and thyroglobulin abs were positive. The NHS GP still attributed my symptoms to depression.

    I wish you good luck.

  • I pointed that out and was just given the usual..your levels won't always be the same but they are "normal" so nothing to worry about. But if they are "normal" why do I have tpo ab? When apparently it is know that thyroid autoimmune will often give you "normal"tft results. So frustrating!!! I really wish I could scream. Whilst he was talking to me I had a 5 second daydream of actually effing and blinding at him and telling him to go back to doctor school as I obviously seem to know more about it than he does!!!

  • It beggers belief doesn't it?

    Body literally screaming hypothyroid - and still the idiots don't see it!

    What are we paying them for? To keep us sick thats what for!

    Unbelievable...

  • I'm afraid I have no idea about CFS. My daughter was told the only options for her were antidepressants (soooooo not needed), CBT or measured exercise, and regular visits to the MS clinic which were a complete waste of time. No tests were offered. I'd be interested to know what they test. A test of the methylation cycle and nagalase test would give an indication of the level of your illness. I wonder if these would be what they offer. I hope so.

    At the moment, however, I would suggest that you might definitely need some magnesium to help with your constipation -

    This is what Dr. Neil Nathan says about magnesium " When our bodies are deficient in it we see fatigue, depression, malaise, muscle cramps and pain, and difficulties with focus, memory and concentration........ Some of the major symptoms of magnesium deficiency are: fatigue; exhaustion; tiredness; muscle cramps; spasm; pain; muscle weakness; manual treatments like chiropractic, physio etc. do not hold more than a few hours; depression; cardiac arrhythmias; cognitive impairment; insomnia. Most doctors don't know how to measure it accurately. Magnesium is usually found inside the blood cells, not in the blood stream....... The body thinks that magnesium is so important that it will do everything in its power to keep blood levels normal. Thus you could have a perfectly normal blood test result and still have low magnesium levels inside your cells.......Our bodies have a limited capacity to absorb magnesium from the intestines.

    When that capacity is exceeded we get the one symptom that too much magnesium produces - diarrhea.

    All magnesium formulas are not created equal. Most magnesium you buy over the counter is entirely or mostly composed of magnesium oxide because it is inexpensive to manufacture......this form of magnesium is not well absorbed by the body. Only 10% of this form of magnesium is actually absorbed"

    Patrick Holford also suggests that magnesium deficiency can cause constipation.

    You might also find Dr. Nathan's book "Healing is Possible" useful. We bought it because it has a chapter on thyroid problems in it, but it has so much more also.

    Jane x

  • Thanks Jane. I'll keep you posted on what I get tested for. CBT for CFS just sounds so weird. I've had CBT in the past and it helped a lot but I can't see what it would do for this condition.

    I'll look into magnesium,would be nice not to be so constipated!

  • Vit C helps with the constipation too x

  • These are a couple of links which may be helpful seeing your TSH has risen now to 3.40:-

    thyroiduk.org.uk/tuk/testin...

    thyroiduk.org.uk/tuk/testin...

  • There you go...why doesn't my gp go by that? He goes by 5.5 and anything under means normal and healthy. How do you convince a doctor that that 5.5 is way too high and that anything over 2 could mean hypothyroid?

  • In the UK they have been given guidelines that treatment should not begin till 10. USA treats people with a TSH of 3.

  • So in the US I would be treated now,because I live in the UK I have to wait till it goes over 10? So why have ranges going up to 4.5 or 5.5 if they don't treat till it reaches 10?

  • Cos they is stoopid!! :-(

  • I think the idea is that your tsh might occasionally fluctuate outside 'normal' ranges so they want to make sure your ht is properly outside the range before they treat you. Seems to cause a lot of unnecessary suffering though, esp since it seems like antibodies should tell them if treatment is needed.

  • It does depend on the doctor. If you have symptoms they should treat if you are over the top limit (4.5 or 5.5), but usually they make you wait until they have done 2 tests, 3 months apart, that are both over the limit, and you can convince them that your symptoms are bad enough. I got treated with TSH of 7, and I have a friend who was treated at TSH of 6.

  • So it's luck of the draw...depends on results and doctors. Thanks for the info eeng :)

  • On the morning of your blood test have the first available appointment as the TSH is higher then. It varies throughout the day. Some GPs do medicate when they take the clinical symptoms into consideration and TSH is climbing.

  • Just get all the tests you can and do your own research and interpretation.

    What irritates me the most is do they not realise how stupid they sound? "The lab won't test this because that's in range" comes up a couple of times, doesn't it? Since when did an automated process in a lab take precedent over clinical judgement. The face of modern medicine. Oh but hang on, I can call it CFS without needing to prove anything so lets go with that...

    Not to mention "he doesn't think I have PA because my haemoglobin is fine." A slap from me for his ignorance. You should post him that BMA best practice link I gave you the other day. And since that B12 test was done 1 month after the loading dose it's not very impressive at all, is it.

    Like janeb I'm sick of the same old story.

  • Ignorance. Absolutely. I feel that is what it is. We are surrounded by ignorant doctors that will not listen to our symptoms and will base all of their decisions on blood test results or as you say will use CFS that doesn't have specific tests to send you away.

    It really does feel that you can't always trust your doctor to do what is needed to make you feel better. My mother in law was surprised when I told her I had to go back to point out I'm folate deficient and that I need high dose of folic acid. I've been going on at her for ages that she needs to get her blood tests results. She's hypo and on meds for it but still feelsrubbish. She finally got the results that her doctor said are all fine and normal and her ferritin is at 38 and her b12 is 350ish. Told her she needs to get her ferritin higher for her levo to work. Told her b12 is pretty low but most doctors will consider normal...advised her to take sublinguals.

    Good idea about the BMA link but I have feeling it will fall on deaf ears...he was again going on about my b12 levels being good.

  • Hi I was referred to a chronic fatigue clinic and these are the tests that are done:

    All people who are referred to the service must have a set of screening tests done within the last 3 months. If you do not include copies of the results of these tests, including their values and the date taken, we will not be able to accept the referral.

    • Full blood count and film

    • ESR/CRP

    • Urea and electrolytes

    • Creatinine kinase

    • Serum Calcium and

    • Liver function tests

    • Thyroid function tests

    • Urinalysis for protein blood and sugar

    • Serum glucose

    • Coeliac serology

    They will accept you as a patient if these tests are ' normal '. I have also been told I have cfs / ME.....although I am sure I have thyroid problems,

    but blood tests say no!! I don't think I have chronic fatigue.

    I have also been told I am depressed....I refused anti depressants!

    It's a long, hard battle but I am continuing to fight with help from people on here.

    I can pm you if you want more details of the clinic I attend. X

  • Hi Mini

    thanks so much for the list of tests...that is very helpful. I don't think I see anything on there to test adrenals so might have to look at doing that privately. Yes please do pm me with more details, would like to know what to expect from the whole process. Thank you again x

  • Hi, I will pm you tomorrow with the details .x

  • You have anti-bodies - and therefore you have Hashimotos. It is auto-immune - a condition that may well start in the gut with Leaky Gut Syndrome or Gut Disbiosis .

    I was diagnosed with Fibromyalgia in the UK 14 years ago - CFS/ME in the UK until recently when Fibro crept in more and more. Dr Peatfield explains in his book that the three are one and the same !

    Eight years ago I was diagnosed here in Crete with Hahshimotos - and all TFT's were in range. A scan confirmed nodes of varying sizes. Scans are rarely done it seems in the UK - cost ?? If you have nodes and anti-bodies then you would be advised to receive treatment....

    There are some home-tests on stopthethyroidmadness.com for Adrenals which may just give you an idea if it's worth moving forward on that one.

    I had Crohns diagnosed over 40 years ago after ileo-caecal TB - hence my non-medical knowledge about guts and their influence on the body.

    Think it is time to tell your GP that the B12 test you had is not a good indicator of what is happening at a cellular level where B12 is needed - only about 20% in the blood remains available for the cells - food for thought Dear Doctor....

    It must be hard to keep battling - but you know you will arrive at your destination - the Glory is in the marching :-)

  • Fibromyalgia, Chronic Fatigue and ME were only named about ten years after the thyroid gland blood tests came in. Before that people were medicated according to clinical symptoms. These 'new diseases' were thought to be the result of diagnosing only due to the TSH results. That's how Doctor Skinner (RIP), Virologist, became involved in treating patients. They were sent to him by various Consultants as they couldn't figure out what was wrong (was it a virus). Dr S, like Dr P, diagnosed many people without the need for blood tests and gave them back their life due to recognising clinical symptoms and listening to the patients.

    Also that's how they were taught as student doctors. It would appear this skill has definitely been lost. 'Progress' ?

  • I didn't know that but it doesn't surprise me at all. You ask "progress?" I think you will get a resounding no from everyone on this board. The fact that he sat there and told me that the symptoms I described aren't thyroid related makes me really think doctors have lost touch with diagnosis based on symptoms. They use these blood tests far too much. In which case I just wish my body did me a favour and "produced" a tsh over the magic number so that I could be taken seriously. How sad and pathetic is that? To wish for a bad result, to wish for a deterioration? Oh dear maybe I am losing it :(

  • You & me both chihiro! That's exactly what I found myself thinking too

  • Scary thought isn't it? I don't want to feel ill. I want to be full of life and energy. Instead I just feel like my life is passing me by and I'm just a spectator instead of the lead. Glad that I'm not the only one that had this insane thought.

  • It is,horribly scary. I sat in my GPs surgery this morning in tears saying 'I want to be able to go to work!'. & when i think of all the times I have wished I had more annual leave that's just ridiculous!

  • Thank you Marz. I shall keep battling, trust me I'm not giving up on my health!

    He did tell me at my appointment last month that my tpo ab might be raised because of stress. I guess it will interesting to see what they are like in a few weeks time. I suspect I have hashi but can't be sure especially when the two doctors I have seen haven't acknowledged this as a possibility.

    I have the Peatfield book but haven't read much of it yet. Find concentrating on books so hard these days. I find myself reading the same sentence over and over.

    re: b12 he's a lost cause there. A friend of mine had levels of 170 last summer,was given loading doses by another doctor, went back to recheck in the autumn and it had only gone up to 250, had one more injection, next test it was 360 and the current doctor that I seeing said that she doesn't need b12 anymore because she is in range and that his levels are only 90 something and he is fine blah blah(so same speech he gave me). I have told her to watch her symptoms all come back in full force. He has no clue what he is talking about when it comes to B12...then again I am not sure he has any clue about much. I'm sticking with him for now to see what the next results bring but I'm considering moving to the practice in the next village.

  • .....Page 160 in Dr Peatfields book - Chapter 13 - Chronic Fatigue and the Thyroid Factor....no need to read the whole thing.... :-)

    Yes - stress can be caused when the thyroid is struggling to perform and keep you going ....do you have any gut issues ?

  • Thanks for giving me the page :) Stuck a bookmark in it so I can read it later.

    You say stress can be caused when thyroid is struggling...what my gp was saying was the ab were raised because I was stressed, so I need to destress and all will be fine. Still trying to find out if it is true that antibodies can be raised because of stress...

    Gut issues. Moggie has suggested that I might have some malabsorption issues and that I should be referred to a gastro. I want to give these supplements a good go but if I still find they are low then i will ask for a referral. I did actually ask him today "why are my levels so low if I have a good balanced healthy diet?" he couldn't answer and then told me that my levels aren't that low. Only gut issue that I have though is constipation which comes and goes in its severety. I have been on low gluten/wheat for a while and it didn't make a difference if anything it seemed to have the opposite effect (made me more constipated)which puzzled me.

  • Does your Doc know what causes you stress ? Perhaps he is just plucking at straws again - as with the B12 :-) Anti-bodies are created in the blood when they come across something they see as alien to them. It could be a gluten molecule or some other sort of enemy. I have read that gluten can damage the gut wall and molecules seep into the blood stream where they are deemed as enemies and anti-bodies are created. There are of course other known irritants that can cause this problem.

    I don't think stress causes the anti-bodies to rise. If you have some inflammation in your body for example - then the BODY is stressed - not you - and that can cause the levels to go up.

    There are some good books and I would suggest - Hashimotos - The Root Cause by Izabella Wentz. She has a website - which you will find if you google her name. She is a Pharmacist and has Hashimotos - her explanations about anti-bodies and everything will help you - I am sure....

    Moggie could be right - I don't have a terminal ileum where the B12 is mostly absorbed - so quite understand about absorption issues. I use the B12 patches from Amazon.....and bypass the stomach and gut....

  • Yep those were my thoughts on the stress causes antibodies to rise. I have read that moderately elevated antibodies could be caused by other things like PA, lupus amongst them. Maybe ruling out PA would be a good thing.

    Someone had suggested that book before,looks good and the info on the website is useful. Thanks again Marz.

You may also like...