Recently diagnosed, confused and being treated like a fraud.

To anyone that can help or offer support/advice.

I am a 26 year old female. A few weeks ago felt like I was falling apart. I am constantly tired, was getting easily confused, being forgetful/foggy and upset easily (all of which is very out of character for me!). Although I am always tired, I struggle to sleep. My joints are sore and was getting very frequent migraines.

After visiting my doctor he sent me for blood tests. I found out later that week by receptionist that doctor had written me prescriptions to collect. Turns out I was deficient in iron and vitamin B12, started supplements for both. Also advised that the doctor wanted to speak with me. I then found out over a week later I have an under active thyroid. Started on Levothyroxinen 50mcg. Will be back for bloods in 5weeks.

Ive been reading that I shouldn't be taking these tablets at the same time (I have been taking the iron, vitamin b12 and Levothroxinen together in the morning). Ive been on the vitamin supplements for 2 weeks and the Levothroxinen for 6 days. Feeling a bit better in the morning but in the afternoon I feel like I could fall asleep at my desk, I cannot concentrate and become forgetful. As I had 3weeks off then went back to work.

My manager seems to think I'm pulling her leg with the way I feel.(She thinks it depression as i had 2months off at start of year to care for my mother-in-law who was terminally ill - I know I am not suffering from depression) As I asked for a phased return to work which was dismissed with a comment that she knows several people with an under active thyroid that are fine.

Is this all in my head?

How long should I leave between taking Levothroxinen and the supplements?

Any help would be greatly appreciated.

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No, it's not all in your head. But, I'm afraid, people just don't understand. I wish I had a pound for every time I've heard that! I know someone with hypothyroidism and she saw this wonderful doctor and she's fine. Would you like his address? And they can't understand when I say no, thank you, I wouldn't! There isn't just one hypothyroidism. It depends what causes it, how long you've had it before diagnosis, how well your treated, what other deficiencies you have, and so many other things. Plus, we're all so different, and react differently to treatment. But what would she know about all that? She hasn't got it, has she.

Iron should be taken on it's own, 2 hours away from food and four hours away from levo. Otherwise, you won't benefit from either of them. The only thing you can take with it is vit c, which helps absorption.

Levo should be taken four hours away from iron, calcium, magnesium and vit D. One hour before food, or two hours after. Two hours away from other supplements.

is the B12 sublingual methylcobalamin? If it's prescribed by your doctor, I rather doubt it, so be careful. Did he tell you to take a B complex with it, to balance your BS?

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Thank you! After the meeting with my manager today i walked out feeling awful. You've made me feel better so thank you.

Im still learning what all the things mean BS, T4 etc. As I only found out last Thursday.

So i apologise if i seem like a dunce.

My doctor is great he has been really supportive and has kept things simple when explaining it to me, think he could see i was dumfounded at what he was saying. I really wasn't expecting to be told at the age of 26 that I'll be on medication for the rest of my life.

He believes that I have had an under active thyroid for at least a year. Just hadn't been picked up. Thinks that the deficient levels of iron and B12 have brought things to light. I have been on Ferrous Fumarate 210mg (1 tablet 3 times a day) for iron and Cyanocobalamin 50mcg (1 a day)

But now I know thank to you I shouldn't be taken them together, I wasn't told otherwise. So will start as of tomorrow to spread them out.

What is BS??

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Sorry! That shouldn't have been a capital S! Bs! But my keyboard gets stuck someitmes.

B vitamins. There are a lot of them, and they all work together, so need to be kept balanced.

I regret to tell you this, but 50 mcg cyanocobalamin is going to do nothing - absolutely nothing - for your B12 deficiency. It should be sublingual methylcobalamin. How much would depend on your test result. But a lot more than 50 mcg! These doctors really have no idea! The always prescribe the cheapest they can. Even if it leaves the patient sick. So, it really is much better to buy your own. You can find all you need on Amazon.

But, you need to know what your result was, first. Did you get a copy of your results? If not, ask for one - with the ranges. It is your legal right to have on under the 1998 Data Protection Act. Just ask the receptionist. :)

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I didn't get a copy but I have a phone consultation with my doctor tomorrow so will ask him then. I am asking him for an in-depth medical report for my work. I am also going to try and get a phased return to work, as in the afternoon Im done in. As i work for a bank dealing with financial difficulties so being able to concentrate on what I'm doing is vital.

As far as I am aware my bloods were checked for b vitamins, C and D vitamins. Iron and magnesium. Liver and kidney and thyroid were all checked. It was only B12 that was sitting at 114?? (thats what the receptionist said as it was on the notes) Iron levels i don't know tbh.

Is 210mg of ferrous fumarate (1 three times a day) a normal amount to be taken for a deficiency?

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With a B12 that low, you should be checked for Pernicious Anemia. That is way, way too low. But, if your doctor won't do that, get 5000 mcg sublingual methylcobalamin nuggets on Amazon.

Really not much point in testing for vit C, just take some. You can't over-dose because it's water-soluble. There's absolutely not point in testing for magnesium because it will always be in-range, due to the way the body handles magnesium - the way these doctors waste tax payers money, and then refuse to test the FT3! Where's the logic in that?!?

Anyway, as I was saying, magnesium will always be in range, but that doesn't mean you aren't deficient. Just take some - but not magnesium oxide, because you can't absorb that.

I'm afraid I don't know much about iron, but you could post a new question asking just about that, and our iron experts will reply. :)

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Thanks for the advice. I will start Vitamin C tomorrow. When I was speaking to my pharmacist she had hinted about the possibility of me being anaemic, just based on the medication I was being given. Seems odd that she has thought that but no other mention of it from the doctors.

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Well, just being low in iron and B12 doesn't automatically make you anaemic. There are other tests to be done to know that, I believe. But it's a pharmacist's job to know that sort of thing! lol

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Thank you greygoose for taking your time to reply to me. I am feeling better about this now. Thanks to all the replys and this forum I am now starting to understand there are things i can do to improve my situation. SIGH of relief - for the first time in a long time :)

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You're welcome. :)

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Is 210mg of ferrous fumarate (1 three times a day) a normal amount to be taken for a deficiency?

Yes, your iron prescription is fine. :) Be aware though that doctors will often stop prescribing far too early. Once your iron is in range they will often stop prescribing. But to get the best results from your thyroid hormones you need your ferritin (iron stores) levels to be optimal, not just in range.

If your doctor does stop prescribing early, then don't panic - you can actually get ferrous fumarate 210mg from some pharmacies without a prescription (but not all, so try a different one if you are refused - I use Tesco Pharmacy and Lloyds Pharmacy for my ferrous fumarate).

If you do have to start providing your own iron pills be aware that regular testing is essential because iron is toxic if levels get too high. But you can get private blood tests done without requiring the permission of your doctor. You only need money... You can get a ferritin test for £39 at current prices. Ask if and/or when the subject arises.

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Cyanocobalamin is the cheapest and least efective form of B12. If you can afford it, buy sublingual methylcobalamin (you can get Jarrow formulas on Amazon and earn some money for TUK by using their easy fundraising link). If your B12 is low enough for a GP to notice, you need 5000iu a day.

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Yes Levo should always be taken on empty stomach and no food or drink for at least hour after. (Pity Dr's don't give this advice out)

Many of us take on waking, some prefer bedtime, either as more convenient or perhaps more effective. (Trial and error what suits each of us)

No other medications at same time, especially iron or magnesium, these must be at least 4 hours away

Usual advice on repeat thyroid blood test, is to get it done early in morning, ideally before 9am. No food or drink beforehand (other than water) don't take Levo in 24 hours before (take straight after).

This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, is the standard advice keep TSH result as high as possible.

Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.

It would be a good idea to also check your folate level (often low if B12 is low) and also vitamin D - also common to be low with thyroid problems.

You also ideally need to know if you have high thyroid antibodies. There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's, this is the most common cause of being hypo.

NHS rarely checks TPO and almost never checks TG. NHS seems to believe it is impossible to have negative TPO and raised TG. It's rarer, but not impossible.

It is not unusual to feel really ill, so no you are not imagining it! We all know examples of people who apparently sail through without too much trouble. Sadly doesn't apply to us all. Obviously on a forum you tend to get higher percentage of difficult cases! But not everyone is that bad either.....hopefully you will be in the middle ground and pick up as you get settled. But starting on three medications at once...no wonder you are feeling rough.

You do have to be patient, and let your body recover at its own pace. Don't try to do too much. Rest if you need to.

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Thanks foe the advice i am now going to organise my medication accordingly. Nice to know I'm not imagining it. After meeting my manger today felt like I was going nuts! Was slightly insulted being compared to her friends. (no offence but they are double my age) so think she was jumping to conclusions. As she couldn't understand that my confusion, fogginess, and forgetfulness could have anything to do with my thyroid. I demanded a medical report from my doctor to be requested just to prove I'm not making this up.

I also think that you are right that maybe i was expecting too much too soon. I was hoping Id be feeling like the old me after 6 days. Wishful thinking lol. I haven't seen the report of my bloods but I have a phone consultation tomorrow with my doctor so will ask him then for a copy.

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Also the people your boss knows have probably been on medication for years, so bound to be better health wise.

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50 mcg is a starting dose, your doctor should retest you in six weeks to see if it needs increasing. As others have said, don't take any levo 24 hours before the blood test, and have the test as early in the morning as you can. As you are newly diagnosed I am sure all this information may seem a bit overwhelming, but this is a very helpful forum, so ask if you don't understand anything. One of the main causes of hypothyroidism is an autoimmune condition called Hashimoto's, and this can be tested for. Many people with Hashimoto's, including myself, have chosen to avoid gluten as there is evidence that gluten fuels the antibody attacks.

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Just seen in the time it took me to type that reply others have said the same, with lots more detail, I am really slow at typing!

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I am not the quickest my self. But everyones input is greatly appreciated so thank you for taking your time to reply to me. I was wondering is there a rough time scale as to when I should feel any better than what i do now?

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It will take a few weeks I would think, it depends how long you have been undiagnosed. Also being low on b12 can make you feel tired too, so you must be feeling really bad with both problems. Regarding the typing. I find it is not do much the typing that is slow, but the time it takes no to undo all the crazy auto correcting that this iPod does!

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I know what you mean! I had to edit my original post like 4 times so it would make any sense. I laughed during my appointment as the look on my doctors face was that of surprise. When he told me about the deficiency of B12, iron and that I had an under active thyroid all at the one. He said he found it remarkable I could get out of bed (Which has been a struggle!) I even slept through my alarm a few times this year and have tarnished my perfect time keeping record at work.

As I may have had this for a few years, do will it take a while for my body to readjust?

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I think it will take a while to feel your old self again, but you will feel a bit better soon, now you are on medication. It will probably be a gradual road to regaining your health, but at least you now know why you feel so tired, and that you will feel better, that should help.

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Thank you so much for taking your time to reply to me. I mean this to everyone that has. I feel better about this now. Think that once I have a better understanding of the condition then I will be able to move forward a bit more confident.

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Some symptoms may go quick but I was 12 months before I felt alot better and at my age Inam concious of time running out!

I have read that one vitamin you can take with levo is Vit C as it helps absorption but for now perhaps best to take with the iron.

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You should see if you GP can help with writing sick and fit notes for work.

Don't know what industry and organisation you work in but some are kinder to you if you get a note from your GP if you need sick leave.

As the fact you are iron deficient, B12 deficient AND hypothyroid means you will be feeling very tired as one condition alone knackers people, and that's ignoring the pain.

If you are tired all the time plus have pain you do get down, which idiots like your manager interpret as depression.

Unfortunately there is no way of knowing when you feel 100% better.

You will feel slightly better if you can sort out your B12 deficiency. B12 tends to be the quickest to fix if there are NOT absorption issues. Unfortunately neither you or anyone else including the doctor will know this until it happens.

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After my meeting today, I booked a phone consultation with my doctor for tomorrow. As i felt awful. The pain and sore joints i can cope with. (supposedly i have a high tolerance to pain) its the tiredness that is the worst as i lose concentration easily and become forgetful. Hopefully over time with the right meds in place I will get there. Light at the end of the tunnel sounds good. My doctor has been good as he'd advised me to get in touch with him if I had any questions or issues.

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In reality you actually don't need a phased return to work.

You either need a shorter week until you feel less tired, or some sick leave again until you feel less tired.

Unfortunately with the last option you will put your job at risk if you do have vitamin and mineral absorption issues as it can take months to sort it out, and this is ignoring the hypothyroidism issues.

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The shorter week is what my work classes as a phased return. They truly are backwards. Unfortunately i cannot afford to take any more time off work. I was hoping to work until 3 at a push for a week or 2 until i can begin to adjust to the medication. My work is not happy with that even although my GP wrote my return to work as phased, recommendation of to do what i feel capable of. i.e. shorter days or lighter duties in the afternoon. My manager dismissed me, as though I am making things up. But hey ho. Ive now contacted the union but thats another story which i will not bore you with.

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You are welcome to come here anytime and vent on how badly you are being treated.

People don't realise they aren't the only one until they speak up.

Did you tell your union you think you have a disability? If not say to the union "I think I am covered under the Equality Act 2010 as having a disability."

Diabetes, all types, are recognised by unions and the law as being disabilities due to the side effects they cause if medication and/or a strict diet isn't adhered to. So on that note hypothyroidism is as if you didn't take medication you could have a crisis and end up dead. Also the nutrient deficiencies you have are due to the hypothyroidism. (I suggest you read up on hypothyroidism so you can explain simply to a union rep why it's a disability.)

Your union then has to support you as a worker with disabilities and your employer has to be careful as they don't want to be accused of discrimination.

However it will likely be up to you to suggest the adjustments you need, and the employer can refuse them though they will send you to occupation health first.

Be aware occupational health can write reports the employer wants to hear e.g. dismissing the impact of your condition. This does tend to depend on your employer.

So make sure you request a copy of every report work gets from your GP or any doctor work sends you to as it is your right under the Data Protection Act 1998.

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There are a small number of illnessess recognised as disability e.g. cancer.

Hypothyroidism is not a disability as such in the Act.

What matters are the normal day to day activities ( not employment) that you are unable to carry out because of your illness e.g carrying shopping, household duties. Examples are given in the law and guidance.

Best to avoid quoting the law yourself and use the Union .

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Unfortunately not all union reps are knowledgeable about the law, and even the ones who are expect you to say if you "think" you are covered.

Even if you are wrong as long as you say "I think I am " NOT "I am" the employer is not allowed to take repercussions against you.

I am speaking from personal experience here as it's only because people like myself where able to take cases to tribunal the law regarding what medical conditions can be considered disabilities has changed.

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I agree re reps ,but some are good. The law is extremely complex and since fees were introduced cases have fallen dramatically. I was age retired from sitting on Employment Tribunals as a lay member over a year ago.

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The ones you saw at tribunals should be good as they are the ones sufficiently trained up. Over the years I've talked to different union reps, after using one who was fully trained up, and not all have had sufficient legal training to help people with legal matters. One who was helping an acquaintance of mine was completely new to the role and found it stressful finding out how to best help her in meetings with her employer.

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The full time officials are better in general but most unions have been weakened.

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Just to add that over the last decade or so hardly any union reps appeared.They mainly use solicitors these days and are much more selective by sifting out weak cases.

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If you want to read more about it go to the ThyroidUK website which is a goldmine of information

thyroiduk.org.uk/tuk/index....

That will help you to understand what your doctor is telling you.

Good that your doctor is so supportive. Lucky you.

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Thanks for the link. As Im struggling to get to sleep, think this will be tonights reading sorted.

Thank You :)

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Two things spring to mind. Have you had your vitamin D levels tested? If you have, ask for the results. Sore muscles and joints is a common effect of low vitamin D.

The other thing... Has your doctor told you that being hypothyroid you are entitled to free prescriptions for life whatever the prescription is for?

nhsbsa.nhs.uk/1126.aspx

It has to be renewed every so often (every 5 years I think). If you don't renew it and still claim free prescriptions the NHS has been known to get people charged with fraud, so remembering to renew is essential.

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Twiggyboy,

It's definitely NOT all in your head (I sometimes have to be reminded it's not all in mine!).

You may be able to refer yourself to Occupational Health Department, instead of waiting for your manager to refer you. My experiences with Occ Health have been positive, so far. You can request to have your copy of Occ Health report emailed to you prior to it being released to your manager and you can request amendments to the report. Hypothyroidism isn't officially considered a disability but my Occ Health doctor stated in his report that the disability discrimination act applied in my case.

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Thank you for your reply. I will definitely look into this .

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