Hi everyone, i am new to this forum and looking forward to having many a discussion with you all
To give you a brief background: my name is Louise, I am 22 years old and have been diagnosed yesterday by the wonderful Dr Skinner with Hypothyroidism. Since the age of 8 years old, (and most likely before this from memory)I have been struggling with low energy, oversleeping and still feeling tired, depression and anxiety, racing thoughts, visual side hallcinations, muscle and joint pain during day and night, low blood pressure and heart rate, very cold hands and feet, bouts of insomma, low concentration, anaemia,repeated urinary tract infections, urine incontience, repeated stomach upsets with diarrhoea, irregular periods extreme sensitivity to light and hair loss amongst others. However I have not gained weight as such during my childhood/adoloscence, infact I have found that my metabolism has been very good as child, but as ive got older i find i can gain a stone in a week and then lose it quickly.
During my childhood and teens, I struggled to attend school and jobs due to excessive tiredness, I found it so difficult to get up to the morning. Granted I was also bullied throughout school, but i feel this was due to my poor attendance. I moved out of home at 16, due to having a toxic relationship with my mother and moved to Shropshire, then Wales. I completed an access course at 18, but remember how much of a diffcult time it was. I was always exhasted, and remember wondering how people manage to clean, cook etc. it felt too much for me. My hair was falling out and I barely had the energy to look after myself. I spent everyday and night studying as my anxiety was high and I felt i had to study all day to even pass. Eventually it was found I had anaemia, which improved on treatment. At this time I was diagnosed with Dyselxia, dyspraxia and adhd tendencies by a educational psychologist.
I then went on to study a Nursing degree, which I struggled with through my course. My energy was always low, and I couldnt cope with shifts/uni etc. I would leave classes and be exhausted at home. I also had major depression through my course and had to take time out after my first year, as I was crying in class for no reason and not attending placements. I saw a counseller and she helped me and recommened i see my gp, which resulted in my depression diagnosis and I then went back to uni and managed a couple of months of my second year. At the time I was also experencing great stress as my mother and brother get severely ill and that meant me regularly travelling to London (where i am from orginally and where my family resides). this put another load of pressure on me and I got to breaking point. I decided to leave my degree in january this year, as i was very depressed and sucidial. I simply couldnt cope anymore. I also felt like any little stress or responsibility was too much for me to handle. in the end I decided that I needed to take time out and focus to getting better.
since leaving nursing, I have struggled to hold down a job, i have a job as a healthcare assistant which again is very stressful and physically demanding. I am on a zero hour contract so can work when I please, but even this is too much for me. I briefly worked in a bar a couple of months ago, but was let go in my trial period, as I revealed that I had depression due to feeling unwell. I then went back to my previous job, but again have struggled to work, and have not been working for the last two months. I have to rely on my fiance to support me at the moment, which I feel awful about, but I simply cannot cope with my old profession anymore.
I have had a long battle to get to the point where i saw Dr Skinner: I was diagnosed with depression and anxiety in 2011 after presenting at my doctors with low energy and feeling low. I was intially put on citalopram (an anti depressant) which i tried for 6 months but found no difference in my mood, infact my depression was gradually getting worse. I was having suicidal thoughts, extreme anxiety, bursts of energy and insomnia and enlarged pupils. So I asked my doctor if i could come off it. I was then reffered to a local mental health team, who reffered me to a psych.
The psych refused to see me personally, dispite my long history of chronic depression since 8. The psych failed to diagnose anything specific, but just suggested I take mitrazapine (30mg) to help with insomnia. Trouble is ive been on this for 4 months, (just finished my last dose last night) and its resulted in me feeling extremely tired, despite sleeping most days for 12-14 hours, and generally feeling low still and having sucidial/self harm thoughts. So I feel that anti-depressants do not help me. During taking mitrazapine, I have put on 3 stone in 4 months!! I dont know if this is the drug, or a sign my thyroid is getting hypothyroid, I have not put on this amount of weight before so quickly. Although my diet can be poor, as I find my energy gets low most days and I crave coffee/sugar to lift me.
I then came across a memoir about depression (sorry cant remember authors name) who mentioned that she was resistant to anti-depressants and had hypothyroidism. This got me thinking, I know my maternal grandmother had hypo, and my mother shows signs of it, so would there be a possiblity I could have it?
So I went to my GP, and told her about my family history of the disease, and asked for a blood test to confirm whether i have hypo. My previous GP refused at first, saying 'Your depressed! thats why you feel fatigued all the time!' after a long battle, she eventually agreed to run a full panel. I then decided to see another doctor in my surgery as I feel her attitude was rude. My new GP is a very good listener thank goodness, and by this time, I had reliased I needed more than just TSH to confirm my diagnosis, so I request that T3 and antibodies be added too. She did say thats not really needed at this stage, but I asked her to do it enough times that she gave in! however when she tried to add T3 to my test, it wasnt an available option on the system. (I live in North Wales). I was absolutely shocked! Also I asked for thryoid antibodies to be added to test for hashimoto, and my GP didnt know which ones to do, so she just did thryoid peroxide.
So when the results came back everything was ok, but I had this feeling I couldnt rely on this alone. When I asked my GP what my scores where, she just said they are normal. (my previous GP's seem to be very reluctant to tell me what the actual figures are). At this point i thought I was going mad, but i really had a hunch I had hypothyroidism.
So I decided to go private and see Dr Skinner. I have read lots of posts saying how good he is, and how he diagnoses on signs and symptoms, not just TSH. I finally got a copy of my blood results from my doctors and I will put this below:
June 2013:
TSH: 2.0
T4: 9.8 (Scale 7 -17)
Peroxide antibodies: <50 (negative)
I was worried my GP wouldnt refer me due to his GMC conditions and normal thyroid results according to their lab. However she agreed.
I saw Dr skinner on Friday 23rd August, and initally was asked to complete a symptoms checklist. I must have highlighted 3/4 of the list, which surpised me! I then went into the consultation, and was very anxious (i tend to be like this around new people). We went through my symptoms, he physically palpated my thyroid and checked my blood pressure. He said my thyroid was swollen and asked if my GP had ever physically examined my thryoid, to which i replied no. He also commented that I show clear signs of being hypothyroid, and that my tsh shows hypothyroid and my T4 is low. So he's going to start me on Levothyroxine and see me in two months.
He is a lovely man and I found his humour put me at ease
So thats my story, I still cant believe I have actually been diagnosed! I think its going to take time for it to sink in, but at least I know im not a hypochondriac!
I hope my story can help at least one young person, who feels they may have hypothyroidism
Thank you very much for taking the time for reading my post, and I apologise for any mistakes or it not making sense. I have bad brain fog at the moment and I cannot spell for england!
Lou x
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Thank you very much for your reply Tegz, it has been a long journey, its a relief though to know i'm not the only one. My TSH was taken by my GP in June and ive seen him in August, he seemed happy to look at these results, although I might have bloods done just before I see him next. I agree that my TSH is not that high, dr skinner said however it shows hypothyroidism due to the fact a healthy tsh should be 0.8 -1. Wow that's a high TSH, you must have felt so awful
I agree on the diet thing, I am now taking a vitamin b12 and iron supplement as my levels were at the lower end of the scale.
I am really pleased, thanks, its still a shock but i'm happy to finally have a diagnosis.
Disclaimer added, thank you, phew! could have had a lawsuit on my hands, and I wouldnt want that over my first post!
And i did mean to say NOT a hypochrondriac, oops! I had bad brain fog yesterday, thanks for reading through it dispite my mistakes!
No probs, Louise it's the mistakes that keep us human
My TSH wasn't that high, just under 5 -unlike some poor souls >10.0
It's been shown thet that AVERAGE TSH in healthy people is from just above 2 falling to 1 in later life. In younger people it can be as high as 5 and still be healthy but this neglects one major fact- that young people are naturally more resilient.
If you have other major issues on the physical side then a lower TSH could be important particularly in head injury cases.
This is where specialists like Dr Skinner come in to their own against the many 'rule playing numptys' we have trying NOT to diagnose thyroids correctly.
I'm so glad you have got some good advice at last.
[PS: Remember to take your Iron at least 4 hours apart from T4]
That's an interesting point you made there, it goes to show how unreliable TSH tests are at times. I will bare your advice re iron in mind thank you. How are you finding your treatment ? What meds do you take ?
I don't think the TSH test is unreliable- in fact, an improvement on previous method, but has led to medics using red-line approach to results instead of clinical judgement [in short supply today?]
I've settled on 25mcg Levo- but still much the same broadly -as it's too low to alter metabolism as is reqd.
The side effects - muzziness and neck pain have eased a lot though.
I take meds for high BP and Gout, which I hope don't clash with Levo.
I apologise if its come across that I have miss quoted you! I guess my opnion of tsh stems from what I've read on stop the thyroid madness site. Anyway i hope you improve on your meds. I've been put on a starter dose of 25mg and then increasing by 25mg each week to get to 100mg. Dr S had suggested i take 100mh eventually, however my gp thinks this is too high, but im gonna try it and see x
Well done you for taking control, questioning your GP's when you felt something wasn't right and, most improtant of all, doing something about it. Keep a good record of all your blood test results and keep questioning your GP if you are not happy with things. I have found the most important question is a simple one "why". If you dont understand something ask why, if your GP is suggesting you do something and you cant see the logic behind it ask why, in other words keep questioning and you wont go far wrong.
Has your GP done any other tests apart from the thyroid ones? Have you had the five important ones done for thyroid suffers like your B12, VitD, ferritin, iron and folates as if any of these are not at an optimal levels then your thyroid medicatin could be compromised, and I dont mean optimum levels as far as the NHS is concerned.
Well done you for having such a positive attitude and now you have found this site things can only get even better.
thanks for your quick reply to my post, I certainly felt I was going on a alone path with this, but as you rightly say, its important to ask why and question, which luckily is a part of my nature now.
I will start keeping copies of my bloods, good suggestion
I have had a full blood count which included liver, kidney, antibody levels, iron b12 etc. A few results caught my eye, my GP said my results came back normal, yet said abnormal in big letters at the top.... hmmm...
here is some of my results (I dont have them at the moment but can remember key scores)
Iron stores: 30 (20 is lowest)
B12: 142
eosinophils:0.7 (0.1-0.4)
Dr skinner has recommended I start taking a Iron and b12 supplement, which I am. However I am abit puzzled about why my eosinophils are high? Dr skinner said its not significant, but thought i would add it incase i'm missing something here?
Dont think I had vitD done, although I have read since that it is very important for hypothyroidism, so I will ask my GP for a test. Also I did have folates done, but cannot remember the figure, but it didn't stand out. Unfortunately I gave my only copy of the blood tests to Dr S, and it took an arm and a leg just to get a copy of those! The receptionists kept saying they needed to get permission from my GP to obtain a copy, which I thought was rubbish as its my medical records and I am entitled to see them. grrr!
I will get some bloods done soon, as you rightly pointed out, deficiencies could hinder my thyroid meds.
Thanks again for your support and advice, you have made me feel so welcome and positive about myself,
I've been reading your post and wasn't going to reply, because you have had some great advice already. You are very brave to have come this far on your own, I'm not sure I would have had the confidence to question my doctors at your age, I would have been more likely to just blindly agree with everything they said. It's sad to read of your doctor saying "you're tired because you're depressed", excessive tiredness is a symptom of so many real medical conditions. It's like they stumble on an easy diagnosis and stick with it, and then doggedly believe that everything you suffer from, from that point forward, is down to that one condition.
I have to admit I was thinking of B12 deficiency as I read your story, but that's what I tend to think all the time so I was trying to keep quiet, since you had a thyroid diagnosis. But then you posted your result - 142 - and I just couldn't keep quiet any longer. That is very very low and must have been below the lab range. Your doctor has been very very negligent to ignore this result, I simply can't believe it. I know you are supplementing now, is it with sublinguals? I wonder whether you have had pernicious anaemia all along, left untreated it can lead to thyroid dysfunction, and vice versa, they are very interlinked conditions. If you haven't already done so I would recommend you read the book "Could It Be B12? An Epidemic of Misdiagnoses" by Sally Pacholok & Jeffrey Stuart. And lots of advice and support are available on the following 2 websites:
I really think you should challenge your doctor as to why they are not putting you on B12 injections, and you should perhaps involve the Practice Manager. They should also be testing you properly for pernicious anaemia, the antibody tests are anti-intrinsic factor and anti-parietal cells. If your doctor wants to retest your serum B12 you need to refuse, as the sublinguals will affect the result. They should be treating you on the basis of the test that's already been done. If they do agree to the antibody tests, you need to come off the supplements for a couple of weeks beforehand to get an accurate result.
It is very important that you find out what your folate result is as well, as this is likely low and in need of supplementation. Your iron stores (I'm assuming you mean ferritin?) are also way too low. You should also be being tested for things like Coeliac Disease and H Pylori infection, and Atrophic Gastritis, given your history of stomach issues. All these things can lead to nutritional deficiencies.
The Pernicious Anaemia Society (PAS) is based in Wales, and there is a private clinic in Wales that many people attend for Methyl B12 infusions. So I would have a good read of the PAS forum (you don't have to be a member to read it) and you will see that there is still lots of things you can do to help yourself.
Hi, thank you for your advice, to be honest I am a little shocked because what you have said makes a lot of sense. I will certainly look into this (thanks for your links)
If I may, I want to elaborate more on my first post to make more clearer. First I am not 100% I've remembered my serum b12 result correctly, I know it was low, but within the NHS guidelines as it did not show as abnormal by the lab. This is not to say its not low, I mean my ferrtin was definately 30, but marginally over their guideline of 20 at the bottom.
I gave my only copy of my blood results for June 2013 to dr skinner, wish id made a copy now!
Anyway in terms of anaemia, I was offically diagnosed in 2010, but had the symptoms for years i have not been diagnosed offically before for after this with anaemia)
Also my stomach upsets where severe as a child, particuarly between 8-11 yrs. my mother presumed i had an allergy to milk. I do remember having a series of allergy patch tests done as a child, but i am not aware of the results. As i got older my stomach upsets got less frequent, but i still get them occasionally ,(there is not a consistent pattern to them). They are usually just diarrhoea i haven't been able to pinpoint the cause yet, but i did see a gp in 2010, and asked for a test for cealic disease as my symptoms peaked at this time (funny enough after my anaemia treatment). I had some form of antibody test and it was negative according to my gp at the time.
Just a thought, but i had severe peritonitis and appenditis at 8. Consequently i developed septicemia and im lucky to be here.
i am seeing my gp on thursday this week, so i will check my actual results and go from there. I'm glad you told be about b12 injections, i will.mention this to my gp.
It could be very probable that I've had pa and low b12 for a long time
. But can i ask something, is there a suggestion that i may not be hypothyroid ? To be honest I've had a hard time accepting this as as much as I trust dr skinners judgement, I do worry.. However he did say my thyroid is swollen, my t4 of 9.8 is low, and my tsh of 2.0 is him, showing signs of hypo and have many symptoms.
Or is the chase that the two may be linked ? I understand the importance of correcting my low levels asap and will make this priotry
By the way once I've seen my gp will post the results on here.
I really do appreciate your advise and would rather be told an informed opnion
Have just linked the letter which should make it easier for you to obtain your results to someone else on this post but will link it again incase you miss it.
The link between thyroid conditions and pernicious anaemia is very well documented, but as to whether or not one causes the other, I don't think anyone knows the answer to that. I think the stomach has a lot to answer for (low stomach acid is commonly found in both conditions), and genetics play a big role. I have Graves Disease (overactive thyroid), but the PA came first by 6 years and was incorrectly treated. So in my case I strongly believe my thyroid disfunction is linked to my PA. I often wonder whether or not it would have developed if I had had the right treatment in the first place.
So I wouldn't say you haven't got a thyroid condition, you probably have, but I will say that by optimising the vits and minerals mentioned on this site (B12, folate, vit D and iron) and healing any underlying gut issues, you should find that thyroid function will improve. You say you tested negative for thyroid antibodies, so it might well be that your thyroid just needs some help for the time being while you sort out the other issues, but I have no idea on this side of things since I'm not hypo.
Would you say your problems started after the appendix issues? Did you have surgery to remove your appendix? It could be significant if you had surgery with a nitrous oxide based anaesthetic, as this inactivates all the B12 in your body. This is not so much of an issue for a healthy person, as they will build their levels back up again through diet. But it can be very bad for someone with an undiagnosed B12 deficiency. Here is an article about this:
I would recommend that, as others have suggested, you get another full copy of your test results, and post them all on here and/or on the PAS forum, with ranges.
You should do some further reading on B12d/PA so you have a good understanding of this condition before you approach your doctor, as they tend to be clueless about it. And obviously to help you decide if it might be an issue for you. There are various symptom lists out there, these are the ones from PAS and B12d.org:
Thanks for your reply, you have made an interesting point here and it seems a real shame that you were not treated properly for PA. Must have been a tough time for you.
Anyway before I go onto new developments that have happened today regarding iron and b12, I know I was put under general anaesthetic as my appendix had to be removed as it was gangrenous and was causing blood posioning. I might have had a transfusion too but I'm not 100% on that fact. It's ve interesting to hear that certain types of GA inactive b12, I will look into this.
Anyway I saw my gp today, and she is on the fence about whether she agrees with Dr S diagnosis, but she had agreed to put me on Levo on a trial basis. It has been suggested that I work my way up to 100mg by dr s over 4 weeks, my gp wasn't happy with that either, but she said if I wanted to follow dr s prescription then its my choice. She feels anything above 75mg is too high. She's asked me to have a blood test in 9 weeks.
I asked for my ferritin, b12 and folate levels and this is the results:
Ferritin: 35
Serum b12: 227
Folates: 10
I am sorry that I put incorrect figures in my original post, as I know you took the time and trouble to reply to me, which I appreciate alot. But to be honest those figures are still low.
I asked my gp about whether I had PA and she said no your figures not low enough yet and I won't put you on b12 injections. In fact she said she wouldn't put someone with a level of 100 (b12) on injections either!!! Bloody hell I've got no chance, and she's the best gp in that surgery!
So like dr S, she said take b12 supplements. After taking to yourself, I am interested in knowing what you think about my b12 level. Was my gp right to say this is normal?
I also had to battle with her to get her to give me iron tablets. She said she iron doesn't need treating but it will do no harm to give you a 3 month dose of ferrous fumarate 210g.
Then I asked for more vitamin tests to be done as i want to check my vitamin D levels. She said she has no justification to do this test, therefore I will have to go private ... Splendid!!!
The main issue here is I don't think she accepts fully that I have hypothyroidism nor low iron and b12, which could be underlying PA.
She wouldn't treat at 100? Oh dear me, pity the poor patients at your surgery, that is simply criminal. Boy would I like to be in a room with this woman, I'd tell her a thing or two. Where are the guidelines that allow them to disregard test results and set their own treatment criteria? There's something very sinister about what's going on in our GP surgeries.
You have a decision to make: are you going to try and convince this GP, try another GP, or get some private tests? I still think your B12 levels are too low, and I would recommend the active B12 test if you can afford it. Doing it through St Thomas' is the cheapest way, but you need a referral letter. I'm wondering, she might refer you if you explain why you want it, she has after all agreed to the Levo and the iron (well done you by the way). Since you pay for the test I don't see why she would object...
You could do the Blue Horizon Test, but I don't think they recognise the grey zone of 25 - 50. I think you can post your blood sample to St Thomas' if you don't live near London, but I'm not 100% sure so worth phoning the number on the link and asking.
Sorry, just remembered you live in North Wales. I would be tempted to call Martyn Hooper in the PAS office - PAS is based in Wales and I think he'd be very interested to hear what your GP has said about levels! He might be able to advise you as well. Contact details here:
sorry for my late reply, ive had a tough couple of weeks energy and moodwise. anyway I am going to look into contacting Dr Skinner to ask for a b12 injections prescription to be sent to my gp. if that fails, i will contact PAS and look more into this active b12 test. x
Looking at your results you really do need iron and B12 dont you - your iron stores are your ferritin levels and for your body to be able to get your thyroid meds into the cells, not just in the blood, your ferritin levels need to be above 70 and nearer 90, so no wonder Dr.Skinner said to take iron. Iron supplements must be taken with VitC to allow the body to absorb them, if you dont take them with vitC they wont improve your levels. Some iron supplements have VitC already in them so look into this a bit more before you buy. Your B12 can be bought from Amazon fairly cheeply - I took 1,000iu Jarrow sublingual for 6 months and my levels went from low 200's to nearly 600 - you should be aiming for a level or around 700.
Next step is your VitD - get that checked and you should be good to go.
Dont let the receptionist make getting a print out of your blood results difficult. I am at home at the moment but on my work computer I have a letter that is especially for obtain information from GP's and hospitals. Once they have the letter you should have no further problems as its very legal looking and even gives the GP's a number to phone if they are unable to meet your request. I will link it to you on Tuesday when I get to work.
Glad you are now feeling positive about the whole thing and glad that you think I have helped, that's what this site is all about, helping each other and trying to give each other support, undertanding and advice when needed.
Moggie x
p.s. If you use the "reply to this" button to answer people they get an email to say you have replied to them, its stops people missing your replies to them. If I hadn't gone back into your post I would definately have missed your reply to me
I'm going to slightly disagree with you here, because the "go out and self supplement" attitude to B12 deficiency on this website disturbs me. And yes, even Dr Skinner (if he is aware of Louise's serum B12 result, apologies if not) is trivialising this serious medical condition and treating it as a side show to the thyroid. Any doctor, including Dr Skinner, should have been prescribing B12 injections at a serum B12 level of 142, and with the numerous neuro symptoms displayed by Louise these injections should be administered every other day until no further improvement (as per the BNF section 9.1.2).
You should not have to go out and pay for a lifetime of B12 sublinguals that may or may not work for you. You should also not be monitoring your progress once on B12 treatment using the serum B12 test. This is irrelevant once you are getting B12. The amount you need to put in should be correlated with symptom relief, and for many people with B12 deficiency this means keeping their serum levels in the thousands, not in the hundreds. In addition, Louise's history of anaemia will have masked any macrocytosis caused by B12 and folate deficiency, so it is entirely possible that this has been a problem all along, and that there is some underlying gastric condition as the root cause.
I'm sorry if my view is unpopular, but if we don't fight for proper diagnosis and treatment of all our medical conditions then things are never going to change.
unfortunately I dont think Dr.Skinner can't perscribe (someone correct me if I'm wrong please) and as Louise gave no range with this result I assume she is over the NHS guidlines, which is why I suggested supplementing herself - it would be either that or stay at a totally unexceptable level as far as her thyroid condition is concerned.
I am a great believer in always getting tests done before supplementing and not just throwing supplements down your throat just in case. If Louise's GP could see she was UNDER the NHS guidlines then I was assuming that he would automatically have treated her.
Please dont appologise for having an opinion, if we all agreed with one anoher nothing would be learnt would it.
Thanks Moggie, it would be good to know the range, but the lowest bottom of the range I've ever seen is 150. And we must fight against this test anyway, as it is so misleading as is often talked about on here. I was deficient at 310, so you can imagine how it makes me feel every time these low results are posted and people go out and self supplement rather than get further tests. I know this is difficult with the NHS the way it is, but that's why we have to fight for it, it's no different from fighting for thyroid treatment at normal hormone levels. I'll get back in my box now!
No you stay out of your box and keep advising, sometims advice on this site can be misleading or inacurrate and if other dont pick up on it then how can we learn and do what's best.
Hi moggie, just to clarify in dr skinners book 'diagnosis and managment of hypothyroidism' he states he is able and happy to prescribe b12 injections when required. So I am going to speak to him about this, but he has suggested in the mean time to take supplements.
As I am within NHS Wales guidelines techincally your right in pointing out that she is right in not being required to treat.
Why the NHS cant have one set of guidlines for all I dont know. It can get very confusing on this site as to whether people are or are not within the NHS guidlines and so need to supplement, which is why it is so important to always include your ranges.
I still think hampster1 had a very valid point and it is obviously something she has experienced first hand and is very passionate about.
Thanks for clearing this up though as feedback is always good.
Hi moggie, quick question, ive been looking at jarrow supplements on amazon.should I take 1000iu jarrow or 5000iu? I don't want to overdose myself but my b12 is low.
I took Jarrow 1,000iu for four months and my levels went from low 200's to high 500's so if I were you I would stick to the 1,000 as 5,000 may be a bit to much.
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Has anyone else been to see Dr Chapman?
Dr just rang me and is 'confused by my results'
HELP....... nhs Doctors are letting me down (again)
